People hear the word "Autism" and their mind automatically envisions someone who is unable to talk, is good at math, and unable to function. At least that seems to be the common thought around here. People think they "know" what Autism looks like.
You might be surprised to hear just how "normal" Jenna is. Seriously. She loves her baby sister. She shares. She loves to play outside and swimming is probably her favorite thing to do. She is adorable inside and out! She loves to blow bubbles and fly kites. She loves her swing set, especially when Daddy is the one who's pushing! She rides her bike like a little daredevil, but takes it slow when Mommy is out with her :) She is very smart, she loves writing words and challenging herself. She really loves her Grandparents. She enjoys playing games on the computer. She loves cotton candy yogurt and prefers the "go-gurt" variety. Her favorite game is CandyLand, and she wins almost every time she plays. She cheats everytime she plays Chutes and Ladders. She always buckles herself in the car and even buckles in her little sister. She is a huge helper...she feeds her baby sister Emily while I cook dinner, and she helps her Daddy change the oil in our cars. She desperately wants to take swim classes this spring and she loves school. She smiles a lot and is genuinely a great little girl. She is beautiful.
When someone hears "Autism", the above things are NOT typically things that come to mind. There is a misrepresentation of Autism. Some people would think that if a child is like what I described above, they obviously dont have Autism. There is an idea that Autism must be "Rainman". That someone with Autism must live a sad life and should be pitied.
Rethink and reform your ideas about Autism. Make sure that people are aware that Autism can indeed be intertwined with "normal". At the root, Jenna's processing and understanding may be very different from what is considered "normal", but that doesnt mean that she is damaged. It doesn't mean that every person in the world will look at her and see her Autism over shining every other quality she possesses. Although I find it challenging at times to address issues that are new to us and those around us, I find an overwhelming amount of joy in being able to call Jenna our daughter. Not because I pity her, but because she is truly an amazing little girl. I dont "put up" with her; I enjoy her.
Autism is not something to be ashamed of. Having Autism does not equate to possessing only Autistic characteristics. I'm sure most people would be surprised how "normal" high functioning Autism can appear. Educate the world. Spread the word.
Thursday, March 8, 2012
Literal Thinker
Jenna's 3 year old little sister has a mean streak. That may be an understatement, but lets just call it that. She likes to hit when angry and being that her and Jenna are always together, Jenna is usually the target. Jenna does not defend herself. She sits there and takes hits to the face without moving a way. The poor girl just sits there crying. A few weeks ago, we decided to tell her that if someone hits her, she should hit them back. I know what some of you might be thinking. How dare we tell our child it is okay to hit. But Jenna knows and follows rules. Our logic is that we would rather her get in trouble for defending herself than be a pinata for bullies when a teacher isnt looking. We initially thought telling her to tell an adult would be the best route, but we have to be careful with things like that. We dont want to set her up to be a "tattle-tale". We stand firm with this decision.
The first time we told Jenna she should hit back, she was beyond hesitant. She immediately stated that she couldnt because she would go to time out. Bless her little heart. I tried explaining that it is wrong to hit someone, but if someone is hitting you, you should defend yourself and hit them back. She really didnt understand what I was saying. I tried to atleast get her to understand that she should move or block an incoming attack. That was also lost on her.
A few weeks ago, Lexi stomped angrily towards Jenna from across the room with her arm out...she was on a mission to hit Jenna. I was nursing our youngest and all I could do was shout to Lexi to not hit her sister. To my surprise (SARCASM), she ignored me. Jenna did not turn her head or move even though it was very clear by Lexi's actions and words what was about to happen. Jenna just stood there and waited. She took a hit right in the face. What happened next surprised me. She got up and yelled , "Lexi, now I'm going to hit your back!". She then whacked Lexi on the back. Inside I was happy to see her do something, but I didnt let them know that. I broke it up and explained that we dont hit.
Over the next few days, Jenna would hit Lexi back...on her back. Lexi realized that Jenna was only going to hit her on her back, so she thought of a way to get around this. I didnt catch Lexi hitting Jenna, but I heard Jenna yell that she was going to hit her back. I looked to see what was going on...Lexi had decided to get on the ground and lay on her back. This frustrated Jenna beyond belief! "Lexi, get up so I can hit your back!!" She tried to pull Lex up, but Lex wasn't going to let that happen. Lexi laid there smirking, she had outsmarted the system, her clever idea had worked.
So now, every time Lexi gets a cheap shot in, she instantly drops to the floor and lays on her back. I hope she realizes that that defense will not do her any good if she decides to hit one of her little friends. I also hope that Jenna will eventually understand that hitting someone back does not mean literally hitting their back :/
The first time we told Jenna she should hit back, she was beyond hesitant. She immediately stated that she couldnt because she would go to time out. Bless her little heart. I tried explaining that it is wrong to hit someone, but if someone is hitting you, you should defend yourself and hit them back. She really didnt understand what I was saying. I tried to atleast get her to understand that she should move or block an incoming attack. That was also lost on her.
A few weeks ago, Lexi stomped angrily towards Jenna from across the room with her arm out...she was on a mission to hit Jenna. I was nursing our youngest and all I could do was shout to Lexi to not hit her sister. To my surprise (SARCASM), she ignored me. Jenna did not turn her head or move even though it was very clear by Lexi's actions and words what was about to happen. Jenna just stood there and waited. She took a hit right in the face. What happened next surprised me. She got up and yelled , "Lexi, now I'm going to hit your back!". She then whacked Lexi on the back. Inside I was happy to see her do something, but I didnt let them know that. I broke it up and explained that we dont hit.
Over the next few days, Jenna would hit Lexi back...on her back. Lexi realized that Jenna was only going to hit her on her back, so she thought of a way to get around this. I didnt catch Lexi hitting Jenna, but I heard Jenna yell that she was going to hit her back. I looked to see what was going on...Lexi had decided to get on the ground and lay on her back. This frustrated Jenna beyond belief! "Lexi, get up so I can hit your back!!" She tried to pull Lex up, but Lex wasn't going to let that happen. Lexi laid there smirking, she had outsmarted the system, her clever idea had worked.
So now, every time Lexi gets a cheap shot in, she instantly drops to the floor and lays on her back. I hope she realizes that that defense will not do her any good if she decides to hit one of her little friends. I also hope that Jenna will eventually understand that hitting someone back does not mean literally hitting their back :/
Tuesday, March 6, 2012
Adult Friends
Girls on the spectrum can be very difficult to decode! I was explaining to my mother in law the other day about how Jenna can typically do very well with adults. Its amazing how she can quickly make friends with someone 20 years older than her but cannot manage to appropriately interact with her peers.
I often think about why this is. In watching these interactions, Ive come to see that interactions and conversations with adults are far less complicated than with other children. Adults like to lead the conversation and are quick to redirect it if there are confusing moments. Adults have compassion. Adults also enjoy teaching and explaining things; they like to give instructions. To a child who doesn't know what to do, being directed or instructed is comforting. They know whats expected of them and their social mistakes are quickly forgiven or even forgotten. This provides a safe environment for them to be themselves. Adults are great friends, they see the child and the greatness within.
Children are mean. They are brutally honest and make no excuses for anyone. Children will call you on your mistakes. They also expect other children to bring original ideas to the table , so to speak. They typically don't want to lead another child through a conversation or event...they want to simply "be" and talk freely. They are quick to call an imitator a "copycat" and find that behavior annoying rather than cute. They will not guide another child by responding to him/her by answering according to what they assume the other child was trying to say; they will instead question and expect a clear answer. If the other child is incapable of appropriately interacting, the child will usually walk away or resort to teasing or name calling. Young children lack the ability to see inner beauty.
Being a child and interacting with other children is scary! Especially for a child with HFA. All of the stress involved in simply talking to another child is intimidating considering the instant consequences that are always just below the surface of any interaction. I get it. I totally get it.
If Jenna finds herself in a new situation that she doesnt have previous experience with, she tends to get lost. Children her age are constantly diving into new topics. Their short attention spans take them all over the map in just a few minutes! This unpredictable nature makes talking to them very difficult. Often, its hard for Jenna to pick up on key words when talking to children verse when she talks to adults. Adults are pretty consistent and easy to follow. This makes an adult feel like a safe person to her and it also allows the adult to see her in a different light than what her peers see her in. We all want to feel accepted and to have our strengths acknowledged...this is what a friendship with an adult provides. An adult will overlook an odd statement such as, "That train is making my throat hurt". A child will demand to know what exactly that means.
It makes me sad to see Jenna struggle with her peers. I see the look in their eyes when she fails to respond or responds in inappropriate ways. It kills me. I am happy for the adults that she interacts with and is close to, but that is hard in its own way. Sometimes it seems like she is putting on too much of a "show" soaking up that positive energy and not being herself. Like she gets so caught up in the structure of those conversations that she goes off on an autistic high, seemingly hiding her autism. But like all highs, there will always be lows to follow. So while she can put her best face forward with other adults, it always ends in Addison and I reaping the consequences of horrid meltdowns when the act is over. That is the trade off. We are happy for the loving relationships she experiences with the adults in her life because we know they are important, but there is a little jealousy that we dont get that part of her. Maybe not even that, I think maybe it comes from them not also experiencing the difficult moments that seem to be laced through a typical day with us. I think that this one hits me particularly hard because these relationships Jenna forms are with adult females. In the presence of other adult females, Jenna takes to them as if they are her new mother and quickly ignores me. It hurts, I hate it. Its beyond just enjoying the company of new people; I feel a very real disconnect from her when in these situations. Its brutal. Its especially difficult because I think its a huge misrepresentation of our relationship...or more accurately, the type of mother I am. I am not perfect, but I know that I am good at what I do. My family is my world. When Jenna attaches to other females, I automatically assume that those women are judging me...like they think Jenna must be a poor neglected child if she is quick to cling to others and discard her own mother. That assumption may or may not be true, but I cant help but believe that that's what other people think.
At the heart of it all though, I think that I need to get over myself. Jenna is truly an amazing little girl. She's smart, sweet and interesting. She has intelligent observations and she is always thinking. We are lucky to have her as a daughter. If other kids are slow to see how great she is, I am thankful that other adults can see it. Sure, there are jealous moments, but they are insignificant in the grand scheme of things. The important part is that Jenna is gaining confidence. Who knows, maybe the practice with adults will eventually bleed into her interactions with her peers. And, if by chance that doesn't happen, I am thankful that Jenna has a sister so close in age (full of abundant confidence and attitude)who will probably beat the crap out of anyone who is mean to her big sister ;)
I often think about why this is. In watching these interactions, Ive come to see that interactions and conversations with adults are far less complicated than with other children. Adults like to lead the conversation and are quick to redirect it if there are confusing moments. Adults have compassion. Adults also enjoy teaching and explaining things; they like to give instructions. To a child who doesn't know what to do, being directed or instructed is comforting. They know whats expected of them and their social mistakes are quickly forgiven or even forgotten. This provides a safe environment for them to be themselves. Adults are great friends, they see the child and the greatness within.
Children are mean. They are brutally honest and make no excuses for anyone. Children will call you on your mistakes. They also expect other children to bring original ideas to the table , so to speak. They typically don't want to lead another child through a conversation or event...they want to simply "be" and talk freely. They are quick to call an imitator a "copycat" and find that behavior annoying rather than cute. They will not guide another child by responding to him/her by answering according to what they assume the other child was trying to say; they will instead question and expect a clear answer. If the other child is incapable of appropriately interacting, the child will usually walk away or resort to teasing or name calling. Young children lack the ability to see inner beauty.
Being a child and interacting with other children is scary! Especially for a child with HFA. All of the stress involved in simply talking to another child is intimidating considering the instant consequences that are always just below the surface of any interaction. I get it. I totally get it.
If Jenna finds herself in a new situation that she doesnt have previous experience with, she tends to get lost. Children her age are constantly diving into new topics. Their short attention spans take them all over the map in just a few minutes! This unpredictable nature makes talking to them very difficult. Often, its hard for Jenna to pick up on key words when talking to children verse when she talks to adults. Adults are pretty consistent and easy to follow. This makes an adult feel like a safe person to her and it also allows the adult to see her in a different light than what her peers see her in. We all want to feel accepted and to have our strengths acknowledged...this is what a friendship with an adult provides. An adult will overlook an odd statement such as, "That train is making my throat hurt". A child will demand to know what exactly that means.
It makes me sad to see Jenna struggle with her peers. I see the look in their eyes when she fails to respond or responds in inappropriate ways. It kills me. I am happy for the adults that she interacts with and is close to, but that is hard in its own way. Sometimes it seems like she is putting on too much of a "show" soaking up that positive energy and not being herself. Like she gets so caught up in the structure of those conversations that she goes off on an autistic high, seemingly hiding her autism. But like all highs, there will always be lows to follow. So while she can put her best face forward with other adults, it always ends in Addison and I reaping the consequences of horrid meltdowns when the act is over. That is the trade off. We are happy for the loving relationships she experiences with the adults in her life because we know they are important, but there is a little jealousy that we dont get that part of her. Maybe not even that, I think maybe it comes from them not also experiencing the difficult moments that seem to be laced through a typical day with us. I think that this one hits me particularly hard because these relationships Jenna forms are with adult females. In the presence of other adult females, Jenna takes to them as if they are her new mother and quickly ignores me. It hurts, I hate it. Its beyond just enjoying the company of new people; I feel a very real disconnect from her when in these situations. Its brutal. Its especially difficult because I think its a huge misrepresentation of our relationship...or more accurately, the type of mother I am. I am not perfect, but I know that I am good at what I do. My family is my world. When Jenna attaches to other females, I automatically assume that those women are judging me...like they think Jenna must be a poor neglected child if she is quick to cling to others and discard her own mother. That assumption may or may not be true, but I cant help but believe that that's what other people think.
At the heart of it all though, I think that I need to get over myself. Jenna is truly an amazing little girl. She's smart, sweet and interesting. She has intelligent observations and she is always thinking. We are lucky to have her as a daughter. If other kids are slow to see how great she is, I am thankful that other adults can see it. Sure, there are jealous moments, but they are insignificant in the grand scheme of things. The important part is that Jenna is gaining confidence. Who knows, maybe the practice with adults will eventually bleed into her interactions with her peers. And, if by chance that doesn't happen, I am thankful that Jenna has a sister so close in age (full of abundant confidence and attitude)who will probably beat the crap out of anyone who is mean to her big sister ;)
Wednesday, February 22, 2012
The New DSM-V
The new revisions in the Diagnostic and Statistical Manual of Mental Disorders that will be enforced in 2013, has stirred up a lot of controversy. For one, the Aspergers diagnosis will "go away", instead, it will be merged with the current Autism diagnosis and those with the diagnosis will now be considered to have high functioning autism.
The revision will also include making the diagnosis more difficult for a person to receive. I think this is an irresponsible way of trying to artificially manufacture data to show autism rates are "dropping". Then, just like that, the rapid increase in Autism today will be swept under the rug and forgotten.
Except for the fact that all the children being denied a diagnosis will still have Autism.
They wont receive the extra help they need to develop. Their parents will not get the support that is needed to be patient, nurturing, understanding teachers. They will not receive the tools needed to advance...they will be forgotten by the world while their parents suffer in silence, not having an answer as to why their child is behaving the way they are. Without a diagnosis, many children will be denied the opportunity to live a great life and appreciate their differences.
Currently, to receive an Autism diagnosis, a person must meet *some* of the criteria. The new standards will require that person to meet all of the criteria. This does not concern me about Jenna's diagnosis. When she was diagnosed, she met all of the criteria. But it does concern me about the future of other kids who may not qualify in all areas. Just as NT people are not all 100% the same, neither are people on the spectrum. To assume that every person with Autism will present the exact same way is bizarre and in my opinion, unprofessional.
My heart breaks for the future. Imagining children being denied access to much needed services and knowledge is beyond sad. If Jenna had not been diagnosed, she would not be as advanced as she is today. The diagnosis was the key that unlocked a world of answers. We became immersed in a world of professionals and parents of children on the spectrum. We were able to go against our natural parental instincts and be the parents that she needed us to be. Her progress is a clear indicator of the work have all put in. She would not be where she is if we didn't have access to the information that a diagnosis brought; without it, we'd probably have gotten caught in the "all kids do that, she'll catch up one day" routine only to have a severely delayed 4 year old, simply from us being unaware of how to teach her.
What does this mean for the future? To me, it means an unfair start to a confusing life. Perhaps we will again see a revision in the DSM-V at some point. Years after many children slip through the cracks and someone finally takes note that something is "wrong" with our youth. Hopefully, it wont be too late to help, but i fear for many that it will be.
The revision will also include making the diagnosis more difficult for a person to receive. I think this is an irresponsible way of trying to artificially manufacture data to show autism rates are "dropping". Then, just like that, the rapid increase in Autism today will be swept under the rug and forgotten.
Except for the fact that all the children being denied a diagnosis will still have Autism.
They wont receive the extra help they need to develop. Their parents will not get the support that is needed to be patient, nurturing, understanding teachers. They will not receive the tools needed to advance...they will be forgotten by the world while their parents suffer in silence, not having an answer as to why their child is behaving the way they are. Without a diagnosis, many children will be denied the opportunity to live a great life and appreciate their differences.
Currently, to receive an Autism diagnosis, a person must meet *some* of the criteria. The new standards will require that person to meet all of the criteria. This does not concern me about Jenna's diagnosis. When she was diagnosed, she met all of the criteria. But it does concern me about the future of other kids who may not qualify in all areas. Just as NT people are not all 100% the same, neither are people on the spectrum. To assume that every person with Autism will present the exact same way is bizarre and in my opinion, unprofessional.
My heart breaks for the future. Imagining children being denied access to much needed services and knowledge is beyond sad. If Jenna had not been diagnosed, she would not be as advanced as she is today. The diagnosis was the key that unlocked a world of answers. We became immersed in a world of professionals and parents of children on the spectrum. We were able to go against our natural parental instincts and be the parents that she needed us to be. Her progress is a clear indicator of the work have all put in. She would not be where she is if we didn't have access to the information that a diagnosis brought; without it, we'd probably have gotten caught in the "all kids do that, she'll catch up one day" routine only to have a severely delayed 4 year old, simply from us being unaware of how to teach her.
What does this mean for the future? To me, it means an unfair start to a confusing life. Perhaps we will again see a revision in the DSM-V at some point. Years after many children slip through the cracks and someone finally takes note that something is "wrong" with our youth. Hopefully, it wont be too late to help, but i fear for many that it will be.
Tuesday, January 24, 2012
The Haircut
I recently did something I said I'd never do. I cut Jenna's hair and I gave her (gasp) BANGS! This is something I swore I'd never do. I look back at pictures from when I was younger and I cringe! Because of this, I have always been anti-bangs. No daughter of MINE will ever have bangs! Never.
Jenna's hair has always fallen staight into her eyes. She would never naturally sweep her hair to the side and out of her eyes. Sometimes, she would actually do the opposite and brush it straight over her eyes. I always thought she would eventually start doing what Lexi has always done and move it. I thought that it was something that might happen with age, so I wanted to wait it out until she was old enough to do it on her own before I went the dreaded bangs route. Most of the time, I kept a barret or ponytail in. But it was a losing battle. She would rip them out at some point and break/rip her hair out. I've known for awhile what the answer to this problem was, but I tried very hard to avoid it.
I was looking at her tangled mess and decided that she needed a haircut. I did a great job! But two minutes after I gave her this adorable short hair cut, you guessed it, she was brushing it straight down and into her eyes. I knew what I had to do, but I really didnt want to do it! I asked her if she wanted me to cut the front of her hair...she said yes. I held the scissors to a spot just above her eyes and held my breath. I contemplated for many minutes if I was doing the right thing. She kept saying "Just Do it Mommy!!! Do it!" So, I did.
I looked at her and instantly thought I had made a huge mistake. I really truly did not like it. I never cut bangs before. They were too blunt and too short. Her hair suddenly looked darker, and she looked like a different kid. Even she thought so...she stimmed in front of the mirror for 15 mintues after, shaking her head back and forth and calling herself the "new Jenna". When I tried to brush them slightly to the side, she would freak out and glue them straight down on her forhead, making her look completly ridiculous. I wanted to cry. But I didnt let her know that. I kept commenting how cute she looked...I was secretly trying to convince myself that it was true.
Its been about a week and a half. The blunt cut has softened and it really does look cute now. Its nice seeing her beautiful eyes without having to put a pony tail in. However, I do hope that the obbsession with having hair in her eyes will diminish one day and that she wont forever have bangs. Oh the things I said I'd never do! I will never say never again, but I hope to God that I never have to give another daughter bangs :)
Jenna's hair has always fallen staight into her eyes. She would never naturally sweep her hair to the side and out of her eyes. Sometimes, she would actually do the opposite and brush it straight over her eyes. I always thought she would eventually start doing what Lexi has always done and move it. I thought that it was something that might happen with age, so I wanted to wait it out until she was old enough to do it on her own before I went the dreaded bangs route. Most of the time, I kept a barret or ponytail in. But it was a losing battle. She would rip them out at some point and break/rip her hair out. I've known for awhile what the answer to this problem was, but I tried very hard to avoid it.
I was looking at her tangled mess and decided that she needed a haircut. I did a great job! But two minutes after I gave her this adorable short hair cut, you guessed it, she was brushing it straight down and into her eyes. I knew what I had to do, but I really didnt want to do it! I asked her if she wanted me to cut the front of her hair...she said yes. I held the scissors to a spot just above her eyes and held my breath. I contemplated for many minutes if I was doing the right thing. She kept saying "Just Do it Mommy!!! Do it!" So, I did.
I looked at her and instantly thought I had made a huge mistake. I really truly did not like it. I never cut bangs before. They were too blunt and too short. Her hair suddenly looked darker, and she looked like a different kid. Even she thought so...she stimmed in front of the mirror for 15 mintues after, shaking her head back and forth and calling herself the "new Jenna". When I tried to brush them slightly to the side, she would freak out and glue them straight down on her forhead, making her look completly ridiculous. I wanted to cry. But I didnt let her know that. I kept commenting how cute she looked...I was secretly trying to convince myself that it was true.
Its been about a week and a half. The blunt cut has softened and it really does look cute now. Its nice seeing her beautiful eyes without having to put a pony tail in. However, I do hope that the obbsession with having hair in her eyes will diminish one day and that she wont forever have bangs. Oh the things I said I'd never do! I will never say never again, but I hope to God that I never have to give another daughter bangs :)
Friday, January 6, 2012
Wednesday, January 4, 2012
Where Does it End?
I'm coming across a lot of information lately that I totally disagree with. There is a whole community of people who think that it is best for the child to not be able to stim in public due to what other people might think. This drives me a little crazy.
A stim is a response to sensory overload or stress. Its a self soothing action that someone on the spectrum engages in to deal with that stress. Everyone, NT and all, stims to a certain degree...pen clicking, finger tapping, pacing, or even foot tapping.
There are a lot of people who think that you shouldn't allow your child to engage in their stims unless in the privacy of their own room. That the child shouldn't engage in these behaviors because, gasp, people might think they have autism. Well, guess what? Your child DOES have autism. Get over it. Those behaviors you are trying to change are the behaviors that allow your child to deal with and process their environments. I don't know about you, but I would rather be allowed to rid myself of that stress immediately than be forced to bottle it all up and have to spend my personal time in a stressful, overwhelming, anxiety filled state of repetitive stimming.
Although I disagree with eliminating the stim, I do however agree with helping the child discover more socially acceptable stims. For instance, Jenna will chew on her hands and shirts. Obviously, sticking her hands in her mouth introduces many germs and flashing people when lifting her shirt to chew on it is unacceptable. So we bought her a special necklace designed to chew. Also, the clip is somewhat of a fidget toy that will give her something to play with while out. It allows her to stim in a socially acceptable way.
Most people who believe in eliminating the stim instantly refer to spinning in circles and hand flapping. I think that those particular stims minimize with age anyways, especially in those with high functioning autism. Yet still, its what I commonly hear people who insist on eliminating stims refer to when the subject arises.
I think that what upsets me the most is the idea that a child on the spectrum must be made as NT as possible. That is asking A LOT of a child. I cant imagine the constant criticism being good for anyone. Although we all want the lives of our children to be as easy as possible and for them to be accepted, I don't think that it should come at the cost of their self esteem. I want Jenna to posses the skills needed to be a part of society, but I think there needs to be room for her to still be who she is as well...and for her to know that who she is is an amazing, incredible person who should never feel inferior to anyone. How could that be instilled when telling her constantly that her natural instincts are "wrong"?
It cannot.
A stim is a response to sensory overload or stress. Its a self soothing action that someone on the spectrum engages in to deal with that stress. Everyone, NT and all, stims to a certain degree...pen clicking, finger tapping, pacing, or even foot tapping.
There are a lot of people who think that you shouldn't allow your child to engage in their stims unless in the privacy of their own room. That the child shouldn't engage in these behaviors because, gasp, people might think they have autism. Well, guess what? Your child DOES have autism. Get over it. Those behaviors you are trying to change are the behaviors that allow your child to deal with and process their environments. I don't know about you, but I would rather be allowed to rid myself of that stress immediately than be forced to bottle it all up and have to spend my personal time in a stressful, overwhelming, anxiety filled state of repetitive stimming.
Although I disagree with eliminating the stim, I do however agree with helping the child discover more socially acceptable stims. For instance, Jenna will chew on her hands and shirts. Obviously, sticking her hands in her mouth introduces many germs and flashing people when lifting her shirt to chew on it is unacceptable. So we bought her a special necklace designed to chew. Also, the clip is somewhat of a fidget toy that will give her something to play with while out. It allows her to stim in a socially acceptable way.
Most people who believe in eliminating the stim instantly refer to spinning in circles and hand flapping. I think that those particular stims minimize with age anyways, especially in those with high functioning autism. Yet still, its what I commonly hear people who insist on eliminating stims refer to when the subject arises.
I think that what upsets me the most is the idea that a child on the spectrum must be made as NT as possible. That is asking A LOT of a child. I cant imagine the constant criticism being good for anyone. Although we all want the lives of our children to be as easy as possible and for them to be accepted, I don't think that it should come at the cost of their self esteem. I want Jenna to posses the skills needed to be a part of society, but I think there needs to be room for her to still be who she is as well...and for her to know that who she is is an amazing, incredible person who should never feel inferior to anyone. How could that be instilled when telling her constantly that her natural instincts are "wrong"?
It cannot.
Catching up
Its been awhile! Having 3 kids has definitely given new meaning to the word "busy"! As chaotic as it can be at times, I am loving life right now as I am fully aware of how fast time passes. I am sure that one day I will look back on these days and wish that I could have them back. Because of that, I am really just trying to embrace it all.
Jenna has really taken on the big-sister-to-a-new-baby role very well. She really loves her sisters, that's for sure. Some people assume that a child with autism is incapable of showing emotion; those people are wrong. The most difficulty that I am having with Jenna and Emily is that Jenna is not very aware of her surroundings. In a day, she flops, bounces, and runs into just about everything. There is not a day that she doesn't walk square into a door knob :/ The girl has constant bruises, and so do all of us from the millions of times we are bumped! Its a big concern when you have a baby around. Lexi is 2 and can usually get out of the way; Emily is 6 months, so obviously we have issues. Jenna and Lexi were both walking at 9 months...I am certain that Emily will be much later in her milestones as she isn't exposed to much floor time!
Jenna turned 4 this past November. She is talking more and more each day. She is capable of describing things, asking and answering questions, and even just interacting verbally in general. We still find that she is easily confused and will often go into non sense, especially while in her natural environment. I still find myself having to repeat things again and again. Usually, I cant just say " can you go get your shoes? they are over by the door". Its almost like information overload and she just responds "huh?" "what?". Sometimes it takes multiple repeating for her to understand. I think that's our biggest hurdle of the moment, definitely the cause of most of my frustration. Its hard not being able to just talk, but having to think of ways to explain things so that she will understand. It just doesn't feel natural, always having to word things in the "right" way so that she will understand. Its tough because with Lexi only being 2, we can have natural flowing conversations. With Jenna, it feels very choppy, and even though I understand why, it still can make things difficult. But I know that she is working hard. I will occasionally look back and feel guilty for my lack of patience. Truth is though, knowing how difficult it is for her, I truly appreciate how far she has come.
All in all, Jenna is doing well. People will often ask me , "is her autism getting better?" Obviously, there is a lack of understanding. Jenna will always have autism. There is no "better" or "worse". As she grows, her struggles and weakness' morph into different things. Some of her struggles may not be as obvious to those less experienced with Autism, but they are struggles none the less. The misunderstanding of Autism can be frustrating, but I do realize that it is coming from a good place. It is difficult for there to be understanding when living in a world where "Rain Man" is what most people associate Autism with. Because of this, anything "less severe" gets considered "better" ; in reality, comparing the two is like comparing apples to oranges. But that is another blog in itself :)
I will be making the time to write more. I am currently a Group Leader on an Autism site and have been dedicating a lot of free time to that. I am in the process of stepping down from that role though, so keep checking in!
Jenna has really taken on the big-sister-to-a-new-baby role very well. She really loves her sisters, that's for sure. Some people assume that a child with autism is incapable of showing emotion; those people are wrong. The most difficulty that I am having with Jenna and Emily is that Jenna is not very aware of her surroundings. In a day, she flops, bounces, and runs into just about everything. There is not a day that she doesn't walk square into a door knob :/ The girl has constant bruises, and so do all of us from the millions of times we are bumped! Its a big concern when you have a baby around. Lexi is 2 and can usually get out of the way; Emily is 6 months, so obviously we have issues. Jenna and Lexi were both walking at 9 months...I am certain that Emily will be much later in her milestones as she isn't exposed to much floor time!
Jenna turned 4 this past November. She is talking more and more each day. She is capable of describing things, asking and answering questions, and even just interacting verbally in general. We still find that she is easily confused and will often go into non sense, especially while in her natural environment. I still find myself having to repeat things again and again. Usually, I cant just say " can you go get your shoes? they are over by the door". Its almost like information overload and she just responds "huh?" "what?". Sometimes it takes multiple repeating for her to understand. I think that's our biggest hurdle of the moment, definitely the cause of most of my frustration. Its hard not being able to just talk, but having to think of ways to explain things so that she will understand. It just doesn't feel natural, always having to word things in the "right" way so that she will understand. Its tough because with Lexi only being 2, we can have natural flowing conversations. With Jenna, it feels very choppy, and even though I understand why, it still can make things difficult. But I know that she is working hard. I will occasionally look back and feel guilty for my lack of patience. Truth is though, knowing how difficult it is for her, I truly appreciate how far she has come.
All in all, Jenna is doing well. People will often ask me , "is her autism getting better?" Obviously, there is a lack of understanding. Jenna will always have autism. There is no "better" or "worse". As she grows, her struggles and weakness' morph into different things. Some of her struggles may not be as obvious to those less experienced with Autism, but they are struggles none the less. The misunderstanding of Autism can be frustrating, but I do realize that it is coming from a good place. It is difficult for there to be understanding when living in a world where "Rain Man" is what most people associate Autism with. Because of this, anything "less severe" gets considered "better" ; in reality, comparing the two is like comparing apples to oranges. But that is another blog in itself :)
I will be making the time to write more. I am currently a Group Leader on an Autism site and have been dedicating a lot of free time to that. I am in the process of stepping down from that role though, so keep checking in!
Thursday, October 20, 2011
Following the Blog
I've been noticing that this blog has been getting a lot of views...if you are checking this out, please join to follow the blog! I would love to hear from anyone out there experiencing similiar situations. Thoughts? Opinions? Vents? Contact me, I'd love to hear from you :)
Wednesday, October 19, 2011
A Few Weeks In...
So preschool has begun! We all are on cold #3 to prove it ;) Adjusting to being at school has been a little difficult for Jenna. She seems to do fine in school, but its the getting home that has been a tough transition for her. The first day, I may have pushed her too much. I was just so excited to see her and I wanted to hear all about her day. I know that she has a hard time answering questions, yet still, I pried. I just really wanted to know about her day. The more I asked, the angrier and more closed off she became. I backed off. When we got home, she didn't want to get out of the car. When I finally got her out, she didn't want to go in the house. She had a full out meltdown on our porch. This was a moment of transition, and starting school then coming home was the biggest transition she had encountered at the time.
I am happy to say that each day this gets better. I have started a routine of having milk and cookies ready for her when she gets home and that has helped tremendously. That first week, she didnt know what she was supposed to do next. Now, she has something to help her transition into being home. Once she's in the house, after the hurdle of getting in, she slowly becomes herself again.
So, how do we feel about her being in school?
Truthfully, I am a little disappointed with the way the school system works. I feel like we are very disconnected from everything. Jenna really struggles with telling us what she has done during the day. Its very hard for her to put her thoughts into words when recalling things from memory. I hate not knowing. We have no idea what the teachers have observed or what they are focusing on. I asked if they could just write a small note of something Jenna might have done that day so that I could have something to build conversation from. Something simple, like "ate sandwich, sat next to Mandy". But apparently, that is asking too much. They did it ONE day.
Jenna does not have a speech or language delay. But she does have SPLD. She can answer questions and follow commands. I am worried that the school might be overlooking her language disorder because to them, everything sounds original and fine. On paper, she is advanced. But having a real conversation with her is very rare at this point. Real life conversations are so difficult for her, but you might not see that if you are simply giving her directions and not trying to talk to her casually. This is more than obvious outside of a structured enviroment where casual conversation is more abundant than following directions.
I have emailed the teacher but haven't heard anything back yet. We are planning to schedule a meeting with the IEP team to ensure that everyone is on the same page. If she is going to a special preschool, we want to be sure that her issues are indeed being addressed and not brushed off to the side simply because she is a sweet, smart, compliant child.
We know all too well that Jenna is a great actress. That is probably why we are especially eager to hear from them. Is she putting on an act all day? We seriously doubt that she could pull off a whole day acting, but you never know. Does she stim by running around from spot to spot screaming while there? Does she sit by the female teacher and play with her hair the same way she does to ALL women, even strangers? Does she speak in her own language the way she does most of the time while at home?
We want to know these things. If they aren't observing these things, she should probably be there more often so that they can. If they are observing these behaviors, we want to know what exactly they plan on doing to address them.
Who knows, we all may very well be on the same page, but its impossible to know because of how difficult it is to get a response. There is a definite flaw in their system. Maybe they aren't used to parents being actively involved in their child's development.
This week is fall break at the school, so we probably wont hear from them until next week. Even so, I am anxiously checking my email "just in case".....
I am happy to say that each day this gets better. I have started a routine of having milk and cookies ready for her when she gets home and that has helped tremendously. That first week, she didnt know what she was supposed to do next. Now, she has something to help her transition into being home. Once she's in the house, after the hurdle of getting in, she slowly becomes herself again.
So, how do we feel about her being in school?
Truthfully, I am a little disappointed with the way the school system works. I feel like we are very disconnected from everything. Jenna really struggles with telling us what she has done during the day. Its very hard for her to put her thoughts into words when recalling things from memory. I hate not knowing. We have no idea what the teachers have observed or what they are focusing on. I asked if they could just write a small note of something Jenna might have done that day so that I could have something to build conversation from. Something simple, like "ate sandwich, sat next to Mandy". But apparently, that is asking too much. They did it ONE day.
Jenna does not have a speech or language delay. But she does have SPLD. She can answer questions and follow commands. I am worried that the school might be overlooking her language disorder because to them, everything sounds original and fine. On paper, she is advanced. But having a real conversation with her is very rare at this point. Real life conversations are so difficult for her, but you might not see that if you are simply giving her directions and not trying to talk to her casually. This is more than obvious outside of a structured enviroment where casual conversation is more abundant than following directions.
I have emailed the teacher but haven't heard anything back yet. We are planning to schedule a meeting with the IEP team to ensure that everyone is on the same page. If she is going to a special preschool, we want to be sure that her issues are indeed being addressed and not brushed off to the side simply because she is a sweet, smart, compliant child.
We know all too well that Jenna is a great actress. That is probably why we are especially eager to hear from them. Is she putting on an act all day? We seriously doubt that she could pull off a whole day acting, but you never know. Does she stim by running around from spot to spot screaming while there? Does she sit by the female teacher and play with her hair the same way she does to ALL women, even strangers? Does she speak in her own language the way she does most of the time while at home?
We want to know these things. If they aren't observing these things, she should probably be there more often so that they can. If they are observing these behaviors, we want to know what exactly they plan on doing to address them.
Who knows, we all may very well be on the same page, but its impossible to know because of how difficult it is to get a response. There is a definite flaw in their system. Maybe they aren't used to parents being actively involved in their child's development.
This week is fall break at the school, so we probably wont hear from them until next week. Even so, I am anxiously checking my email "just in case".....
Sunday, September 18, 2011
Preschool!!
We found out Thursday that Jenna has been accepted to the special education preschool through the school district! The whole process seemed to take forever, I am so thankful that it is over with and that we can move forward.
The whole experience has been emotionally exhausting. Its been weeks of anxiety and at times, frustration. I think that sometimes schools probably forget that even though they do this kind of thing all the time, for many of us parents, its all very new. I am sure that they have been annoyed with our constant calls and questions. But the truth is, they just dont provide enough information up front regarding what to expect. That leads to the anxiety I mentioned.
One bit of advice that I have been given is to document EVERYTHING. I instantly put together a 3 ring binder and everything from emails, meetings and ideas are copied and instantly put into the binder. If you havent done this, do it now so that life will be easier later on.
Jenna was evaluated by a team on two different days. We always get really anxious during any evals. Its stressful because we all have people in our lives who dispute or minimize the diagnosis because they just dont "see" what we do. So going into an eval, there is always that part of you there that wonders, "will they not "see" it as well?". That thought has always made us sick to our stomaches with worry because so much is riding on their professional opinion. The help she recieves is dependant upon what they observe. I walked out of there both days thinking to myself that she was behaving and talking better than ever and I was sure that they had been fooled by her scripted and rehearsed sentances.
Another part of their eval was seeing Jenna in her natural enviroment. They accepted video clips. This was an awesome oppurtunity to help them truly comprehend our concerns. I can say all day long that Jenna mostly talks in her own language at home, but unless you hear it with your own ears, one might think that I am exaggerating. I can talk about how she has vocal stims and throws toys, but again, it just doesnt have the same effect as seeing it with your own eyes. It wasnt hard to record a couple clips...this was just a typical day in the life of Jenna.
A few weeks later, we finally had a meeting to discuss whether or not Jenna had been accepted to the program. We went in there ready to battle. We had spent weeks thinking that her intellegence masked her deficiencies and that she wouldnt be accepted. When they said that she had been accepted, I think we both felt an instant relief and calmness.
Jenna scored very well in many areas. It felt good to hear them compliment us for all the hard work they could see we had put in with her. They could tell that her responses were practiced and although appropriate, they seemed unnatural. We were told that we have done great in helping her learn these responses , and that now at school, they could help her apply what she has been taught. They also all agreed that she is a very intelligent child, but we already knew that :) It was a good feeling to be respected by the people who are going to be such a huge part of our daughters life.
The areas she was the weakest in were social and emotional abilities. So that is going to be our main focus for her. Afterall, that is the base of everything else. If she cannot work with and interact with her peers appropriatly, she will not do well in school. She needs to be taught how to interact with her peers, and this program will be the perfect enviroment to do so. I am very thankful that she will have 2 years of this before she enters kindergarten.
An aide will be with Jenna in class. This person will guide her continuously to appropriate behaviors and interactions. If she has any issues what so ever, this person will be there just for her. I feel good about this. Seeing Jenna try to interact with her peers is tough to watch. Knowing that she will have someone to be at her side , who will make this easier on her, makes me feel at ease.
Jenna will be starting at the school two days a week. The team said that this is typical protocol for children on the spectrum. They will do this for a few months and then keep adding days. It gives the child time to adjust to the classroom and it leaves room for improvements.
She starts TOMORROW!!! All these days I have said how she really needs to be in school, and here I am feeling a tinge of saddness that she will be going! I am going to miss her so much! But I know that this is what is best for her, and even more than that, I know that she is going to LOVE it. I cant wait to hear how she does. I am sure she will be fine, but Lexi on the otherhand is already dreading Jenna leaving :( Poor girl SOBS when we talk about Jenna going to school without her! Its going to be an adjustment for everyone!
The whole experience has been emotionally exhausting. Its been weeks of anxiety and at times, frustration. I think that sometimes schools probably forget that even though they do this kind of thing all the time, for many of us parents, its all very new. I am sure that they have been annoyed with our constant calls and questions. But the truth is, they just dont provide enough information up front regarding what to expect. That leads to the anxiety I mentioned.
One bit of advice that I have been given is to document EVERYTHING. I instantly put together a 3 ring binder and everything from emails, meetings and ideas are copied and instantly put into the binder. If you havent done this, do it now so that life will be easier later on.
Jenna was evaluated by a team on two different days. We always get really anxious during any evals. Its stressful because we all have people in our lives who dispute or minimize the diagnosis because they just dont "see" what we do. So going into an eval, there is always that part of you there that wonders, "will they not "see" it as well?". That thought has always made us sick to our stomaches with worry because so much is riding on their professional opinion. The help she recieves is dependant upon what they observe. I walked out of there both days thinking to myself that she was behaving and talking better than ever and I was sure that they had been fooled by her scripted and rehearsed sentances.
Another part of their eval was seeing Jenna in her natural enviroment. They accepted video clips. This was an awesome oppurtunity to help them truly comprehend our concerns. I can say all day long that Jenna mostly talks in her own language at home, but unless you hear it with your own ears, one might think that I am exaggerating. I can talk about how she has vocal stims and throws toys, but again, it just doesnt have the same effect as seeing it with your own eyes. It wasnt hard to record a couple clips...this was just a typical day in the life of Jenna.
A few weeks later, we finally had a meeting to discuss whether or not Jenna had been accepted to the program. We went in there ready to battle. We had spent weeks thinking that her intellegence masked her deficiencies and that she wouldnt be accepted. When they said that she had been accepted, I think we both felt an instant relief and calmness.
Jenna scored very well in many areas. It felt good to hear them compliment us for all the hard work they could see we had put in with her. They could tell that her responses were practiced and although appropriate, they seemed unnatural. We were told that we have done great in helping her learn these responses , and that now at school, they could help her apply what she has been taught. They also all agreed that she is a very intelligent child, but we already knew that :) It was a good feeling to be respected by the people who are going to be such a huge part of our daughters life.
The areas she was the weakest in were social and emotional abilities. So that is going to be our main focus for her. Afterall, that is the base of everything else. If she cannot work with and interact with her peers appropriatly, she will not do well in school. She needs to be taught how to interact with her peers, and this program will be the perfect enviroment to do so. I am very thankful that she will have 2 years of this before she enters kindergarten.
An aide will be with Jenna in class. This person will guide her continuously to appropriate behaviors and interactions. If she has any issues what so ever, this person will be there just for her. I feel good about this. Seeing Jenna try to interact with her peers is tough to watch. Knowing that she will have someone to be at her side , who will make this easier on her, makes me feel at ease.
Jenna will be starting at the school two days a week. The team said that this is typical protocol for children on the spectrum. They will do this for a few months and then keep adding days. It gives the child time to adjust to the classroom and it leaves room for improvements.
She starts TOMORROW!!! All these days I have said how she really needs to be in school, and here I am feeling a tinge of saddness that she will be going! I am going to miss her so much! But I know that this is what is best for her, and even more than that, I know that she is going to LOVE it. I cant wait to hear how she does. I am sure she will be fine, but Lexi on the otherhand is already dreading Jenna leaving :( Poor girl SOBS when we talk about Jenna going to school without her! Its going to be an adjustment for everyone!
Tuesday, September 13, 2011
Carnival
This weekend, we took all 3 kids to a carnival. Truthfully, I was a little nervous about going that day. Jenna and Lexi were both working our nerves from the time they woke up. When we loaded the kids in the car and set up the navigation, we learned that it was an hour drive! Not what we had expected or planned...Emily just doesnt tolerate car rides very well. But it was too late to change our minds, we already had gotten the girls excited about going, so off we went!
Emily did okay for the drive. When we got there, Addison wore her in our carrier and i walked with the girls. After the first ride, we discovered that Lexi was not quite the dare devil she pretends to be! We convinced her to go on one more ride, but after that, she was over it. So she and Daddy went to check out the barn full of animals while Jenna and I went on rides!
Jenna went to her first carnival before she turned 2, and she LOVED it then! The lines were difficult for her, but she LOVED the rides! Today, she still loves them. The crowds and noises only made her slightly nervous, but she did great. She was even big enough to ride some of the bigger rides! Jenna has sensory issues, and all the spinning and pressure from the rides gave her the ultimate sensory experience!
The girl shows pure happiness when on those rides. The biggest smiles and laughs she has ever had were on them! I was happy to be a part of it. On one of the rides, I told her that I was scared and she laughed at me and told me that she wasnt scared! HA! Hilarious.
The day turned out being a great one, and I am so thankful that we decided to go even though the day started off rough. Honestly, I kind of wish that we had babysitters so that we could leave Em and Lexi with a sitter and both of us could take Jenna to another one! It was so much fun doing something that we both loved together!
Emily did okay for the drive. When we got there, Addison wore her in our carrier and i walked with the girls. After the first ride, we discovered that Lexi was not quite the dare devil she pretends to be! We convinced her to go on one more ride, but after that, she was over it. So she and Daddy went to check out the barn full of animals while Jenna and I went on rides!
Jenna went to her first carnival before she turned 2, and she LOVED it then! The lines were difficult for her, but she LOVED the rides! Today, she still loves them. The crowds and noises only made her slightly nervous, but she did great. She was even big enough to ride some of the bigger rides! Jenna has sensory issues, and all the spinning and pressure from the rides gave her the ultimate sensory experience!
The girl shows pure happiness when on those rides. The biggest smiles and laughs she has ever had were on them! I was happy to be a part of it. On one of the rides, I told her that I was scared and she laughed at me and told me that she wasnt scared! HA! Hilarious.
The day turned out being a great one, and I am so thankful that we decided to go even though the day started off rough. Honestly, I kind of wish that we had babysitters so that we could leave Em and Lexi with a sitter and both of us could take Jenna to another one! It was so much fun doing something that we both loved together!
Tuesday, September 6, 2011
NT Siblings
We always said that regardless of a diagnosis, we would always treat our children the exact same way. Up until this point, I really thought we were doing great in this department. People have even commented on how they thought it was great that we don't treat our girls any different from the other. It was a couple weeks ago though, that I realized we were actually doing a terrible job.
It was easy to not see, I mean , all of the obvious issues were indeed treated the same. Lexi began having terrible tantrums recently. She was just becoming down right mean. I had no idea why. I thought at first maybe it was her adjusting to the new baby. Then it hit me, not only was she adjusting to a new baby, but she was also getting pushed to the side in many situations and expected to go with the flow while Jenna ran the show. Who wouldn't be upset with that? She started showing her frustration through the only way a 2 1/2 year old can; anger. I think adding a new baby into our family was just the icing on the cake.
It was hard to see this at the time, but looking back, its very obvious that while Jenna got her way, Lexi was expected to just accept what ever situation was thrown her way. Jenna wants to ride her bike...so a bike ride it is. Jenna wants to swim..swimming it is. Lexi wants to play horses but Jenna is screaming uncontrollably because she really wants to color...so coloring it is. Lexi would comply, so of course we would go the route that entailed the least amount of drama.
It's not fair, and I never thought that we would do something like this. Jenna was to be treated no better or worse, but somehow, we strayed from that plan. It obviously was never intentional, but it happened, and it happened more than I'd like to admit.
So often, we are correcting and redirecting Jenna. She needs a lot of attention. Bottom line. If behaviors are ignored, she falls into her own world and becomes extremely difficult. So in a day, a very large amount of energy is put into parenting her. Its exhausting, and because of it, a lot of times its hard to give the necessary attention to Lexi who seemingly needs so much less.
There isn't much information out there on how Autism affects siblings. We all focus on our child with Autism. We try to do everything we can to nurture their growth and help them adapt. Then, subconsciously, we sometimes let our other children lose out on the attention that they very much deserve and need. We don't do this because we are awful parents. We do this because no one has ever told us how to be parents to both Autistic and NT kids at the same time. We can get so enthralled in the world of Autism that we can sometimes think that our other children will naturally be okay because they are, after all, NT.
I was shocked to see that I, albeit unintentionally, treated our Lexi unfairly. It truly broke my heart when I realized how she was being treated. She has put up with a lot. The poor girl wants so badly to just play horses with her sister, but instead has to resort to running around screaming non sense because that's the only way her sister will play with her. On top of having her play dominated by Jenna, she had seemingly no control over anything that was going on in her life. No wonder she was frustrated!!! Jenna was controlling almost everything in her little life.
After coming to this realization, Addison and I have made many changes to how we do things. There is true fairness in our household now. Jenna does not like it too much, but its important for her to know that life isn't about getting her way all the time. It has resulted in many meltdowns and headaches, but I really do think that we are doing them both good with these changes.
We are also enforcing alone time with each of them. This is again great for both of them. I think that Lexi is benefiting more from it though. She needs the chance to interact and play the way her mind is built to do. She needs to be free from "Jenna's world" so that she can develop the way that she is supposed to. Most importantly, she needs to feel that she is important. I don't want her to grow up thinking life was all about Jenna and she was just along for the ride.
So far, I am happy to announce that Lexi is suddenly doing much better than she had been. A good sign that we are on the right track.
If you have other children who are NOT on the spectrum, take the time to examine the dynamics of your family. Its easy to think that you are not guilty of treating your children differently until you really take the time to think about it. If you, like the two of us, are shocked to see that you are guilty of this as well, get over it quickly and DO SOMETHING ABOUT IT! Its never too late to change things! Our children on the spectrum require a lot of attention and care. Its not hard to expel all your energy on them and have little much left for anyone else. But its important to dig down deep and find that extra energy and give that same attention to our other children.
Time to break out that old Super Mom (or Dad) cape yet again ;)
It was easy to not see, I mean , all of the obvious issues were indeed treated the same. Lexi began having terrible tantrums recently. She was just becoming down right mean. I had no idea why. I thought at first maybe it was her adjusting to the new baby. Then it hit me, not only was she adjusting to a new baby, but she was also getting pushed to the side in many situations and expected to go with the flow while Jenna ran the show. Who wouldn't be upset with that? She started showing her frustration through the only way a 2 1/2 year old can; anger. I think adding a new baby into our family was just the icing on the cake.
It was hard to see this at the time, but looking back, its very obvious that while Jenna got her way, Lexi was expected to just accept what ever situation was thrown her way. Jenna wants to ride her bike...so a bike ride it is. Jenna wants to swim..swimming it is. Lexi wants to play horses but Jenna is screaming uncontrollably because she really wants to color...so coloring it is. Lexi would comply, so of course we would go the route that entailed the least amount of drama.
It's not fair, and I never thought that we would do something like this. Jenna was to be treated no better or worse, but somehow, we strayed from that plan. It obviously was never intentional, but it happened, and it happened more than I'd like to admit.
So often, we are correcting and redirecting Jenna. She needs a lot of attention. Bottom line. If behaviors are ignored, she falls into her own world and becomes extremely difficult. So in a day, a very large amount of energy is put into parenting her. Its exhausting, and because of it, a lot of times its hard to give the necessary attention to Lexi who seemingly needs so much less.
There isn't much information out there on how Autism affects siblings. We all focus on our child with Autism. We try to do everything we can to nurture their growth and help them adapt. Then, subconsciously, we sometimes let our other children lose out on the attention that they very much deserve and need. We don't do this because we are awful parents. We do this because no one has ever told us how to be parents to both Autistic and NT kids at the same time. We can get so enthralled in the world of Autism that we can sometimes think that our other children will naturally be okay because they are, after all, NT.
I was shocked to see that I, albeit unintentionally, treated our Lexi unfairly. It truly broke my heart when I realized how she was being treated. She has put up with a lot. The poor girl wants so badly to just play horses with her sister, but instead has to resort to running around screaming non sense because that's the only way her sister will play with her. On top of having her play dominated by Jenna, she had seemingly no control over anything that was going on in her life. No wonder she was frustrated!!! Jenna was controlling almost everything in her little life.
After coming to this realization, Addison and I have made many changes to how we do things. There is true fairness in our household now. Jenna does not like it too much, but its important for her to know that life isn't about getting her way all the time. It has resulted in many meltdowns and headaches, but I really do think that we are doing them both good with these changes.
We are also enforcing alone time with each of them. This is again great for both of them. I think that Lexi is benefiting more from it though. She needs the chance to interact and play the way her mind is built to do. She needs to be free from "Jenna's world" so that she can develop the way that she is supposed to. Most importantly, she needs to feel that she is important. I don't want her to grow up thinking life was all about Jenna and she was just along for the ride.
So far, I am happy to announce that Lexi is suddenly doing much better than she had been. A good sign that we are on the right track.
If you have other children who are NOT on the spectrum, take the time to examine the dynamics of your family. Its easy to think that you are not guilty of treating your children differently until you really take the time to think about it. If you, like the two of us, are shocked to see that you are guilty of this as well, get over it quickly and DO SOMETHING ABOUT IT! Its never too late to change things! Our children on the spectrum require a lot of attention and care. Its not hard to expel all your energy on them and have little much left for anyone else. But its important to dig down deep and find that extra energy and give that same attention to our other children.
Time to break out that old Super Mom (or Dad) cape yet again ;)
Thursday, August 11, 2011
Benifits to Being Sick
Its ironic that I just posted about communication and here I am today writing about what an amazing day it was for Jenna. Yesterday we noticed her talking better than usual. Today, her speech exploded and she was not using rehearsed or scripted sentences. Whats changed? Jenna is sick, she has a very bad cold.
This is a crazy phenomenon that always occurs when she is sick. Suddenly, she stims less and talks like you would expect a child her age to talk. The only exception here is when she has strep throat. With strep throat, she suddenly becomes seemingly much lower functioning than she is. I don't know exactly why this is. I have read about PANDAS and I think there might be something to it. This is only due to what I have witnessed with my own eyes.
This afternoon, I was in awe of Jenna's behavior and the conversations we had. Incredible. It felt like whatever it is that usually makes our connection fuzzy was gone. She understood me clearly and was able to express herself in new ways. There is usually a disconnect present, today, there was not.
I have had conversations with other parents who have witnessed the same thing in their children. A quick google search took me to an ABC report about fever possibly being connected to this amazing change (http://abcnews.go.com/Health/story?id=3938965&page=1) .
I cant begin to pretend that I know why this happens, truthfully, I have no idea. There seems to be so many possible reasons. But, I am happy that it is being researched and that one day, there might be answers. It seems like if we could duplicate the effect of sickness without making the child actually sick, we could eliminate or suppress some of their struggles. Seeing Jenna out of the fog she usually seems imprisoned by is a nice change. She is noticeably less frustrated when she is able to communicate and focus. She seems content and relaxed. Where she would normally blow up because I don't understand her, she was instead continuing the conversation in a way that she is normally incapable of doing. Instead of continuously jumping on the couch screaming in her own world, she was hanging out with me. Just talking and playing.
If you've never experienced this, you cant possibly understand the overwhelming joy of today. Days like today are indeed gifts, I just wish that she didn't have to be so sick to enjoy expressing herself so easily.
This is a crazy phenomenon that always occurs when she is sick. Suddenly, she stims less and talks like you would expect a child her age to talk. The only exception here is when she has strep throat. With strep throat, she suddenly becomes seemingly much lower functioning than she is. I don't know exactly why this is. I have read about PANDAS and I think there might be something to it. This is only due to what I have witnessed with my own eyes.
This afternoon, I was in awe of Jenna's behavior and the conversations we had. Incredible. It felt like whatever it is that usually makes our connection fuzzy was gone. She understood me clearly and was able to express herself in new ways. There is usually a disconnect present, today, there was not.
I have had conversations with other parents who have witnessed the same thing in their children. A quick google search took me to an ABC report about fever possibly being connected to this amazing change (http://abcnews.go.com/Health/story?id=3938965&page=1) .
I cant begin to pretend that I know why this happens, truthfully, I have no idea. There seems to be so many possible reasons. But, I am happy that it is being researched and that one day, there might be answers. It seems like if we could duplicate the effect of sickness without making the child actually sick, we could eliminate or suppress some of their struggles. Seeing Jenna out of the fog she usually seems imprisoned by is a nice change. She is noticeably less frustrated when she is able to communicate and focus. She seems content and relaxed. Where she would normally blow up because I don't understand her, she was instead continuing the conversation in a way that she is normally incapable of doing. Instead of continuously jumping on the couch screaming in her own world, she was hanging out with me. Just talking and playing.
If you've never experienced this, you cant possibly understand the overwhelming joy of today. Days like today are indeed gifts, I just wish that she didn't have to be so sick to enjoy expressing herself so easily.
Tuesday, August 9, 2011
Communication
I think the hardest thing about Autism for me is that I cannot have a conversation with my almost 4 year old. She is capable of talking. But it ALL comes from somewhere else. Being a stay at home mom, I am able to see exactly where each statement comes from. A movie, her sister, her dad...I can recall where just about everything came from.
Sometimes, its just the same conversation over and over again. I cannot tell you how many times I have been told that her sister got kicked out of gymnastics or about tornado warnings. Sometimes, she even tries to demand that I say certain sentances in response to her.
Its especiallly hard when she takes these same things and talks to other people. To those new people, it feels like they are actually having a real, unrehearsed conversation with her. Must be nice. Not being able to atleast feel like something she says is new, is very difficult. It is one thing that I am looking forward to with her being in school. I will no longer know exactly where she got sentances and it will start to feel like I am no longer stuck in groundhog day.
If asked the "right" question, Jenna can respond perfectly. The other day I asked her what her favorite word was. A question she has never been asked before. Her response was , "My favorite word is gymnastics and making dinner." Since she has never been "taught" the appropriate answer, she picked up a key word and responded accordingly. Being asked what's her favorite thing to do was a question that has been introduced by us a few weeks before.
Sometimes, the answer to a question just doesnt make sense. I asked her why she hit the dog. Her response..."Grasshoppers were lost and kittens run". Why questions are very hard for her. Usually, they are answered with "I. Dont. Know." A line from the movie Toy Story. I am pretty sure she doesnt even know what "I dont know" means. Rather, she thinks its a universal response to any "why" question.
Other people do not see the effort that is put in on everyones part, to make her conversations appear typical. NT kids do not have to be taught how to answer questions. Children on the spectrum often do. Jenna does. Social stories, rehearsing what will be said and done in different scenarios, is also very important.
I am very proud of her to be able to learn these responses. I think it shows determination and strength. I cant lie though, it sometimes feels like a catch 22. We work hard to help her be able to appear NT, and then in return have people assume that what they see is what life is like all the time. They see scripted responses and hours of rehearsed sentances. They dont realize that the time we spend with her is practicing her scripted responses and not having actual fluid conversations of our own. We dont get that side of Jenna. We get to be her "practice audience". This is not by choice. Jenna will rarely share real feelings and new thoughts with us, or anyone. She is a mimic, and a good one. But being a good mimic requires practice, hence the reason that at home we continuously hear the same conversations again and again. When we are not hearing the same things, we are hearing nonsense...no real words, only noises.
The interesting twist here, is that on the rare occasions Jenna does say new things, people think that what they are hearing is her problem. When Jenna is speaking from her heart, and not saying rehearsed sentances, she stutters. Addison and I pay very close attention when she does this. She works through it and will say something that is totall 100 % her own. Other people , however, blow this off and think she's being silly. They will tell her to slow down and in turn, it makes her insecure, and she clams up. She then goes back to what she is comfortable with and what people seem to like...scripted sentances.
I am very proud of Jenna and I adore the person she is. But not being able to talk to your child is difficult. Not having a major form of communication makes life hard. No way around that. The fact that it is more complex than what people think adds to the frustrations. Some people will never comprehend the behind the scenes, day to day, real life we live. I cant help but think it would be easier if she didnt have the ability to mimic everything. Atleast that way, people could recognize our hardships and not be so judgemental. But that is a selfish, horrible thought on my part. Truthfully, I would never want to take that gift away from Jenna. That is a strength that will help her through this life, and I would never really wish for something that would ultimatly hinder her ability to function in this world. But it is very hard on our parts to be so isolated from so many people simply because of their inability to see into our real lives. But more than anything, it is extremly depressing to not be able to have an honest to God conversation with your child.
People who do not have a child on the spectrum might read that and think that we must be miserable and hate life. We're not, and we dont ;) Its so important to have friends, either on line or in real life, who have similiar lives so that you have that understanding between you when you share personal struggles. Its so much easier to be able to vent without having to add a disclaimer (kind of what i am writing right now!) to make sure it is still understood that regardless of your current struggle, Your child is still amazing in your eyes!
Sometimes, its just the same conversation over and over again. I cannot tell you how many times I have been told that her sister got kicked out of gymnastics or about tornado warnings. Sometimes, she even tries to demand that I say certain sentances in response to her.
Its especiallly hard when she takes these same things and talks to other people. To those new people, it feels like they are actually having a real, unrehearsed conversation with her. Must be nice. Not being able to atleast feel like something she says is new, is very difficult. It is one thing that I am looking forward to with her being in school. I will no longer know exactly where she got sentances and it will start to feel like I am no longer stuck in groundhog day.
If asked the "right" question, Jenna can respond perfectly. The other day I asked her what her favorite word was. A question she has never been asked before. Her response was , "My favorite word is gymnastics and making dinner." Since she has never been "taught" the appropriate answer, she picked up a key word and responded accordingly. Being asked what's her favorite thing to do was a question that has been introduced by us a few weeks before.
Sometimes, the answer to a question just doesnt make sense. I asked her why she hit the dog. Her response..."Grasshoppers were lost and kittens run". Why questions are very hard for her. Usually, they are answered with "I. Dont. Know." A line from the movie Toy Story. I am pretty sure she doesnt even know what "I dont know" means. Rather, she thinks its a universal response to any "why" question.
Other people do not see the effort that is put in on everyones part, to make her conversations appear typical. NT kids do not have to be taught how to answer questions. Children on the spectrum often do. Jenna does. Social stories, rehearsing what will be said and done in different scenarios, is also very important.
I am very proud of her to be able to learn these responses. I think it shows determination and strength. I cant lie though, it sometimes feels like a catch 22. We work hard to help her be able to appear NT, and then in return have people assume that what they see is what life is like all the time. They see scripted responses and hours of rehearsed sentances. They dont realize that the time we spend with her is practicing her scripted responses and not having actual fluid conversations of our own. We dont get that side of Jenna. We get to be her "practice audience". This is not by choice. Jenna will rarely share real feelings and new thoughts with us, or anyone. She is a mimic, and a good one. But being a good mimic requires practice, hence the reason that at home we continuously hear the same conversations again and again. When we are not hearing the same things, we are hearing nonsense...no real words, only noises.
The interesting twist here, is that on the rare occasions Jenna does say new things, people think that what they are hearing is her problem. When Jenna is speaking from her heart, and not saying rehearsed sentances, she stutters. Addison and I pay very close attention when she does this. She works through it and will say something that is totall 100 % her own. Other people , however, blow this off and think she's being silly. They will tell her to slow down and in turn, it makes her insecure, and she clams up. She then goes back to what she is comfortable with and what people seem to like...scripted sentances.
I am very proud of Jenna and I adore the person she is. But not being able to talk to your child is difficult. Not having a major form of communication makes life hard. No way around that. The fact that it is more complex than what people think adds to the frustrations. Some people will never comprehend the behind the scenes, day to day, real life we live. I cant help but think it would be easier if she didnt have the ability to mimic everything. Atleast that way, people could recognize our hardships and not be so judgemental. But that is a selfish, horrible thought on my part. Truthfully, I would never want to take that gift away from Jenna. That is a strength that will help her through this life, and I would never really wish for something that would ultimatly hinder her ability to function in this world. But it is very hard on our parts to be so isolated from so many people simply because of their inability to see into our real lives. But more than anything, it is extremly depressing to not be able to have an honest to God conversation with your child.
People who do not have a child on the spectrum might read that and think that we must be miserable and hate life. We're not, and we dont ;) Its so important to have friends, either on line or in real life, who have similiar lives so that you have that understanding between you when you share personal struggles. Its so much easier to be able to vent without having to add a disclaimer (kind of what i am writing right now!) to make sure it is still understood that regardless of your current struggle, Your child is still amazing in your eyes!
Thursday, June 2, 2011
Gymnastics Rocks :)
Tonight was Jenna's first day of gymnastics. She did AWESOME!!! We knew she would :) She will follow the directions of people she is not familiar with with no questions asked. She did perfect! She did so good that they want to move her up to the 5 and 6 year old class! Although we are very impressed, we think that its a better idea to keep her with her peers for social developement. She is 3, afterall, and although she appears much more mature, its important that she learn to interact with her peers.
Jenna is always doing flips and jumps here at home, so we knew gymnastics would be a good fit. We are so PROUD of her. Watching her confidently do jumps and walk over the balance beam unassisted was very cool. She was proud of herself too, and THAT was awesome to see! I hope that she loves it enough to stick with it, because she clearly is a natural. Focusing all of that energy towards something like this is perfect for her.
Jennas grandma is coming to stay with us this next month as I am on bedrest for the rest of my pregnancy...I am so excited that someone else in the family will be able to see her in class :)
Jenna is always doing flips and jumps here at home, so we knew gymnastics would be a good fit. We are so PROUD of her. Watching her confidently do jumps and walk over the balance beam unassisted was very cool. She was proud of herself too, and THAT was awesome to see! I hope that she loves it enough to stick with it, because she clearly is a natural. Focusing all of that energy towards something like this is perfect for her.
Jennas grandma is coming to stay with us this next month as I am on bedrest for the rest of my pregnancy...I am so excited that someone else in the family will be able to see her in class :)
Wednesday, May 18, 2011
Difficult Times
My husband pointed out last night that I hadn't written in quite awhile. I think that I have been avoiding it due to the fact that for the past month, things have been difficult. The whole point of this blog was to show the world the positives of Autism. I wanted to be inspiring and motivating to those who are experiencing the tough times.
Its not like I haven't tried to write this past month. Really , I have. But each time, I would read what I had written and delete it. It started to sound more like complaining than inspiring. It isn't fair that I write of our hardships and frustrations while Jenna is feeling the same emotions, but not able to tell her side. When I would write of specific things that she was going through, I was telling it from the pregnant, stressed out mom side...and in turn, I thought that people would draw their own conclusions of who Jenna is. I hated telling the truth of our struggles and having Jenna painted as difficult, even though this past month it has been the case. At the same time, I didn't feel comfortable writing of the random good things, because I thought it would be an inaccurate description of the way things have been. Therefore, I felt it best to say nothing.
Addison really helped me see that it's not only okay to write of the difficult times, it is crucial. We are not the only ones who experience the constant ups and downs. If I leave out the hard times, or try to censor myself, it is doing a disservice to other parents who are no doubt dealing with the same emotions.
With that being said, I believe that this has been the hardest month we have dealt with in a very long time. We are struggling with being proud of Lexi because it seems that noticing her sudden advancement in language and comprehension is at the same time pointing out Jennas deficiencies. Talking to Lexi is so carefree and easy. She tells us what she wants, and she means what she says. When talking to Jenna, it most often ends in a meltdown. She gets confused and says scripted answers...then when we respond to what she says, she realizes that that wasn't what she meant, but she doesn't know how to express what she really wants. She gets angry at us for not knowing what she is saying and begins crying/screaming. And there is nothing we can do to help. We cant do anything right in her eyes when this happens.
Its frustrating beyond belief. Here is a child 3 1/2 years old who has the ability to speak. But she is confused and everyday real life conversations are so difficult for her. If you talk to her about a movie, or things that she has seen or done, she can tell you. If I ask her if she wants more milk, she breaks down. I cant help but get angry because life cannot be centered around 15 minute explanations for everything I say. Sometimes we need to just say something and have it be understood.
This makes me feel like a terrible person, but I have to keep reminding myself that I am still human. It is okay for me to feel frustration, anyone would. Lately, she comes to me and starts whining and speaking non sense expecting me to know what to do. I try to pick her up-she screams. I try to ignore it-she screams. I try talking to her, and-you guessed it, she screams. Everything I do is the wrong thing. It is difficult trying to help her while also entertaining her sister, and also trying to do everyday things like clean or cook. I feel at my end.
I used to think that I could help her and that she didn't need a special education preschool. Now I know that she needs more than I can give. I feel like a failure and like I am giving up on her. This is a very real battle within myself that I face everyday.
We go through tough phases, and this is one of them. It has lasted longer than other times, but I am confident that it will pass, it always does. Until then, I am taking it one day at a time. I asked God for patience, and I am guessing times like this are the building blocks for just that.
Its not like I haven't tried to write this past month. Really , I have. But each time, I would read what I had written and delete it. It started to sound more like complaining than inspiring. It isn't fair that I write of our hardships and frustrations while Jenna is feeling the same emotions, but not able to tell her side. When I would write of specific things that she was going through, I was telling it from the pregnant, stressed out mom side...and in turn, I thought that people would draw their own conclusions of who Jenna is. I hated telling the truth of our struggles and having Jenna painted as difficult, even though this past month it has been the case. At the same time, I didn't feel comfortable writing of the random good things, because I thought it would be an inaccurate description of the way things have been. Therefore, I felt it best to say nothing.
Addison really helped me see that it's not only okay to write of the difficult times, it is crucial. We are not the only ones who experience the constant ups and downs. If I leave out the hard times, or try to censor myself, it is doing a disservice to other parents who are no doubt dealing with the same emotions.
With that being said, I believe that this has been the hardest month we have dealt with in a very long time. We are struggling with being proud of Lexi because it seems that noticing her sudden advancement in language and comprehension is at the same time pointing out Jennas deficiencies. Talking to Lexi is so carefree and easy. She tells us what she wants, and she means what she says. When talking to Jenna, it most often ends in a meltdown. She gets confused and says scripted answers...then when we respond to what she says, she realizes that that wasn't what she meant, but she doesn't know how to express what she really wants. She gets angry at us for not knowing what she is saying and begins crying/screaming. And there is nothing we can do to help. We cant do anything right in her eyes when this happens.
Its frustrating beyond belief. Here is a child 3 1/2 years old who has the ability to speak. But she is confused and everyday real life conversations are so difficult for her. If you talk to her about a movie, or things that she has seen or done, she can tell you. If I ask her if she wants more milk, she breaks down. I cant help but get angry because life cannot be centered around 15 minute explanations for everything I say. Sometimes we need to just say something and have it be understood.
This makes me feel like a terrible person, but I have to keep reminding myself that I am still human. It is okay for me to feel frustration, anyone would. Lately, she comes to me and starts whining and speaking non sense expecting me to know what to do. I try to pick her up-she screams. I try to ignore it-she screams. I try talking to her, and-you guessed it, she screams. Everything I do is the wrong thing. It is difficult trying to help her while also entertaining her sister, and also trying to do everyday things like clean or cook. I feel at my end.
I used to think that I could help her and that she didn't need a special education preschool. Now I know that she needs more than I can give. I feel like a failure and like I am giving up on her. This is a very real battle within myself that I face everyday.
We go through tough phases, and this is one of them. It has lasted longer than other times, but I am confident that it will pass, it always does. Until then, I am taking it one day at a time. I asked God for patience, and I am guessing times like this are the building blocks for just that.
Sunday, April 24, 2011
Easter Fun!
Today was such an awesome day! Addison and I took the girls to a local Easter Egg Hunt…there were big inflatable slides and houses that the girls could play in. When we first showed up, I was unsure of how it would all play out. Instantly, Jenna put her hands in her mouth and became overwhelmed. I think that there were just too many people when we walked up. We had to really push her to go on a slide. We started to get nervous at first because all of the kids who were behind her climbing up a slide began sliding down, and she was no where in sight. It took awhile, but she finally emerged. I think that she got scared and didn’t know how to react, so the kids pushed past her. Sometimes she gets so caught up in watching other people that she loses sight of what she should be doing. Its hard to watch, because it is clear that she is too busy studying others rather than just enjoying what she is experiencing. Even though her sister Lexi needs to probably be less assertive, I found myself silently wishing that Jenna could somehow mimic that strong assertive pushy attitude her little sister used to hold her own against the other kids. I can see Lexi helping Jenna in the future, and it is definitely a confidence booster thinking that she will be there to look out for Jenna when we cannot.
Once we were there for awhile and the crowd died down, Jenna was able to really enjoy herself. Jenna and Lexi both loved jumping in the bounce houses and going down the slides J They decorated cookies and chased balloons. We stayed until the very end and there wasn’t even a fight about leaving! The day went so smooth, it was a day that I didn’t want to end. Watching the girls have fun and truly enjoy themselves is the key to happiness in my eyes.
The day ended with the girls swimming in their little pool and coloring Easter eggs. After the long string of bad days we have had, today was much needed and I think that we all felt that way. I’m still glowing from the day, the good days totally outweigh the bad ones! I think the bad days help us to truly appreciate the good ones, and the bad days are worth it when we get to have a day like today J
Once we were there for awhile and the crowd died down, Jenna was able to really enjoy herself. Jenna and Lexi both loved jumping in the bounce houses and going down the slides J They decorated cookies and chased balloons. We stayed until the very end and there wasn’t even a fight about leaving! The day went so smooth, it was a day that I didn’t want to end. Watching the girls have fun and truly enjoy themselves is the key to happiness in my eyes.
The day ended with the girls swimming in their little pool and coloring Easter eggs. After the long string of bad days we have had, today was much needed and I think that we all felt that way. I’m still glowing from the day, the good days totally outweigh the bad ones! I think the bad days help us to truly appreciate the good ones, and the bad days are worth it when we get to have a day like today J
Monday, April 18, 2011
The New Normal
Today, Addison took Jenna for a bike ride and while they were out, they met some new people. A woman and her college age daughter. Apparently, Jenna kept running to the daughter to give her hugs. The girl was taken back and even said "Oh, wow, this is different! You’re so sweet!" Addison said that you could tell she was a little uncomfortable. Jenna wasn’t talking to her, just running to her to hug her, like she will do with strangers.
It became obvious to Addison that they were very aware that this was unusual and didn’t know how to respond to it. They weren’t being rude in anyway, they were just noticing. This is what we have feared. Jenna is now 3 ½, she doesn’t look like a baby anymore, in fact, she appears to be much older than she is. The behaviors thought to be "cute" when she was a baby are starting to stand out as "different".
After a year of trying to convince people that her struggles are real, strangers are now noticing a difference. You would think that I would be prepared. I am not. When people notice on their own, it’s like a shot to my gut. I automatically want to go into defense mode and explode on them. I can’t help it, and I don’t understand it. I just want to scream that there’s nothing "wrong" with my baby, and how dare anybody think that there might be.
I know it probably doesn’t make sense that I feel this way. It seems foolish that I could be so unprepared for this…I mean, come on, I’ve noticed and have accepted her differences for quite a while now. I don’t understand why it hurts so badly when other people notice. They aren’t even being rude; they are simply reacting to an unexpected behavior. Yet still, that moment that they react feels similar to how I would imagine a giant knife twisting into my chest. Right now, she is too young to notice the awkward moment; she’s so innocent and sweet. But I know one day she will, and it breaks my heart.
I know that Jenna has differences, but those differences are now "normal" to me; Jenna is just Jenna. I’m coming face to face with the reality that not everyone will be as unconditionally accepting and understanding as her parents. It’s one thing to think about it, but its another thing to actually experience it.
Logically, I knew that that is what the future held, but I guess I just didn’t fully understand the affect it would have on me. Even crazier is this insanity of also being upset when someone states that they don’t "see" differences. It’s as if no one can do right when it comes to talking about Jenna. I am smart enough to recognize the twisted nature of that, but I am too emotionally raw for it to be any different. Hopefully this will change with time, if not, I may forever be an overprotective mother bear on the verge of putting her daughter in a giant bubble to protect her from unintentional heartbreaks.
It became obvious to Addison that they were very aware that this was unusual and didn’t know how to respond to it. They weren’t being rude in anyway, they were just noticing. This is what we have feared. Jenna is now 3 ½, she doesn’t look like a baby anymore, in fact, she appears to be much older than she is. The behaviors thought to be "cute" when she was a baby are starting to stand out as "different".
After a year of trying to convince people that her struggles are real, strangers are now noticing a difference. You would think that I would be prepared. I am not. When people notice on their own, it’s like a shot to my gut. I automatically want to go into defense mode and explode on them. I can’t help it, and I don’t understand it. I just want to scream that there’s nothing "wrong" with my baby, and how dare anybody think that there might be.
I know it probably doesn’t make sense that I feel this way. It seems foolish that I could be so unprepared for this…I mean, come on, I’ve noticed and have accepted her differences for quite a while now. I don’t understand why it hurts so badly when other people notice. They aren’t even being rude; they are simply reacting to an unexpected behavior. Yet still, that moment that they react feels similar to how I would imagine a giant knife twisting into my chest. Right now, she is too young to notice the awkward moment; she’s so innocent and sweet. But I know one day she will, and it breaks my heart.
I know that Jenna has differences, but those differences are now "normal" to me; Jenna is just Jenna. I’m coming face to face with the reality that not everyone will be as unconditionally accepting and understanding as her parents. It’s one thing to think about it, but its another thing to actually experience it.
Logically, I knew that that is what the future held, but I guess I just didn’t fully understand the affect it would have on me. Even crazier is this insanity of also being upset when someone states that they don’t "see" differences. It’s as if no one can do right when it comes to talking about Jenna. I am smart enough to recognize the twisted nature of that, but I am too emotionally raw for it to be any different. Hopefully this will change with time, if not, I may forever be an overprotective mother bear on the verge of putting her daughter in a giant bubble to protect her from unintentional heartbreaks.
Tuesday, April 12, 2011
Changes
Today was the first day that I had to explain to someone that Jenna has Autism based on the way she was behaving. Normally, she puts on a good act for strangers, but this week has been a bad one for her.
Lately, she is struggeling with communication, meltdowns, and rituals. She normally will only have trouble with communicating while at home--in public she resorts to her scripted sentances and is able to come off NT. At home, she will often make up her own words and has a hard time understanding what we are talking about. Her meltdowns up until now have always had specific triggers that I could point out. Over the past week, I cannot figure out what is causing them. When I ask her whats wrong, she speaks gibberish, flaps her hands, and burries her face into my belly. She is also extremly attatched to me very suddenly. Her newest ritual is holding my hand when she goes up stairs...if she forgets and remembers at the top of the stairs, she freaks out and insists we re-do it.
Today, we went to our new neighbors house to give them a plate of cookies to welcome them to the neighborhood. Jenna was doing a lot of high pitched screaming and not talking. She wouldnt respond to anything they said. Again, this is not typical for her. Usually, she puts on quite the act for strangers. I casually mentioned when Jenna was out of an ear shot that she has Autism. I felt I had to because they kept asking her "what does that mean? I dont understand screaming." Her response would be yet another scream.
I'm a little concerned over what this means; a little afraid that things are permanently changing. I hate these ups and downs. It seems like we can have a streak of everything going so well that we fool ourselves into believing that she is higher functioning than she actually is. Then times like this occur and we are forced to re-evaluate everything. I just dont understand the yoyo effect we experience. I just wish that everything stayed level so that we could plan everything accordingly; these highs and lows are emotionally draining on all of us. I hate the constant changes.
Lately, she is struggeling with communication, meltdowns, and rituals. She normally will only have trouble with communicating while at home--in public she resorts to her scripted sentances and is able to come off NT. At home, she will often make up her own words and has a hard time understanding what we are talking about. Her meltdowns up until now have always had specific triggers that I could point out. Over the past week, I cannot figure out what is causing them. When I ask her whats wrong, she speaks gibberish, flaps her hands, and burries her face into my belly. She is also extremly attatched to me very suddenly. Her newest ritual is holding my hand when she goes up stairs...if she forgets and remembers at the top of the stairs, she freaks out and insists we re-do it.
Today, we went to our new neighbors house to give them a plate of cookies to welcome them to the neighborhood. Jenna was doing a lot of high pitched screaming and not talking. She wouldnt respond to anything they said. Again, this is not typical for her. Usually, she puts on quite the act for strangers. I casually mentioned when Jenna was out of an ear shot that she has Autism. I felt I had to because they kept asking her "what does that mean? I dont understand screaming." Her response would be yet another scream.
I'm a little concerned over what this means; a little afraid that things are permanently changing. I hate these ups and downs. It seems like we can have a streak of everything going so well that we fool ourselves into believing that she is higher functioning than she actually is. Then times like this occur and we are forced to re-evaluate everything. I just dont understand the yoyo effect we experience. I just wish that everything stayed level so that we could plan everything accordingly; these highs and lows are emotionally draining on all of us. I hate the constant changes.
School
We found out today that kindergarten in our school district is FULL DAY. Oh. No.
One of the things that we have found that helps Jenna is her "quiet time". It’s a time that replaced naptime and gives Jenna the alone time that she needs. If Jenna does not get this time to do her own thing, she tends to stim more throughout the day and also has more meltdowns.
Our original plan was to wait until next year to begin preschool…3 half days. Now, we are thinking that we should enroll her this fall and begin half days so that next year, we can ease her into 3 full days before having to go to 5 full day kindergarten class.
I am really nervous about how this will work out. When Jenna was 2 ½, we started her in an early preschool program. It was only 3 half days a week. What we noticed was that from the time I would pick her up, she would stim more than normal. It was as if she was holding it all in only to release it times 10 when she got home. This extreme change in her behavior was one of the reasons we stopped going.
I am very nervous about her being somewhere for a full day. Although I know that she is capable of holding herself together for a half day, I am certain she will be overwhelmed if she doesn’t have her personal down time. It scares me to think that she might be the "problem child" during what the class calls "quiet time". Their quiet time consists of kids quietly going through books…Jenna’s quiet time consists of jumping and having vocal stims.
We have also noticed that Jenna has a large memory bank of stored sentences. Most of the time, she can properly communicate with others in a way that they are completely unaware that she is using scripted sentences. This is good for school. But we notice that at home, she tends to resort to making up her own language and not seeming to understand what is being said to her. We also know that she can maintain "normalcy" in front of others behavior wise, but again, in the home, seems to resort to behaviors more like those of a child much lower functioning than what others see. We think that this is because she spends most of her time with us, and therefore she is unable to "act" for such long periods of time. We are very concerned about her suddenly spending the bulk of her week in a classroom. We don’t think that she will be able to "act" for that much time of her day.
Because of this new information about kindergarten being full day, we have decided to make an appointment with the head of special services at the school. We originally thought that we would keep the diagnosis to ourselves until problems were brought to our attention. Now we are thinking that it would probably be a smarter choice to inform the school and work out something ahead of time.
We want her to be "mainstreamed", but we also want help available if she is having difficulties. We know that quiet time will be a struggle for her. Maybe they can take her out of class at that time so that she doesn’t disturb the other children., or bring negative attention to herself. Ideally, I would want them to start her out the same as all of the other children, and if they notice struggles, devise another plan.
But I have no idea how the school works in situations like ours. I am really looking forward to sitting down with the head of the department to find out what their protocol is. The thought of Jenna in a classroom all day long has me feeling a little nauseous though. Hopefully over the next couple years, we will have a plan in place that will ensure the best possible experience for her.
From what I have been told by other mothers with daughters on the spectrum, school usually isn’t too much of an issue until around 6th grade…the time where, for girls, social interaction becomes the center of school rather than class itself. That’s typically where girls on the spectrum struggle with things like social isolation and bullying. For that, we are already assuming that we will homeschool. But now I am just getting way ahead of myself J One worry at a time…
One of the things that we have found that helps Jenna is her "quiet time". It’s a time that replaced naptime and gives Jenna the alone time that she needs. If Jenna does not get this time to do her own thing, she tends to stim more throughout the day and also has more meltdowns.
Our original plan was to wait until next year to begin preschool…3 half days. Now, we are thinking that we should enroll her this fall and begin half days so that next year, we can ease her into 3 full days before having to go to 5 full day kindergarten class.
I am really nervous about how this will work out. When Jenna was 2 ½, we started her in an early preschool program. It was only 3 half days a week. What we noticed was that from the time I would pick her up, she would stim more than normal. It was as if she was holding it all in only to release it times 10 when she got home. This extreme change in her behavior was one of the reasons we stopped going.
I am very nervous about her being somewhere for a full day. Although I know that she is capable of holding herself together for a half day, I am certain she will be overwhelmed if she doesn’t have her personal down time. It scares me to think that she might be the "problem child" during what the class calls "quiet time". Their quiet time consists of kids quietly going through books…Jenna’s quiet time consists of jumping and having vocal stims.
We have also noticed that Jenna has a large memory bank of stored sentences. Most of the time, she can properly communicate with others in a way that they are completely unaware that she is using scripted sentences. This is good for school. But we notice that at home, she tends to resort to making up her own language and not seeming to understand what is being said to her. We also know that she can maintain "normalcy" in front of others behavior wise, but again, in the home, seems to resort to behaviors more like those of a child much lower functioning than what others see. We think that this is because she spends most of her time with us, and therefore she is unable to "act" for such long periods of time. We are very concerned about her suddenly spending the bulk of her week in a classroom. We don’t think that she will be able to "act" for that much time of her day.
Because of this new information about kindergarten being full day, we have decided to make an appointment with the head of special services at the school. We originally thought that we would keep the diagnosis to ourselves until problems were brought to our attention. Now we are thinking that it would probably be a smarter choice to inform the school and work out something ahead of time.
We want her to be "mainstreamed", but we also want help available if she is having difficulties. We know that quiet time will be a struggle for her. Maybe they can take her out of class at that time so that she doesn’t disturb the other children., or bring negative attention to herself. Ideally, I would want them to start her out the same as all of the other children, and if they notice struggles, devise another plan.
But I have no idea how the school works in situations like ours. I am really looking forward to sitting down with the head of the department to find out what their protocol is. The thought of Jenna in a classroom all day long has me feeling a little nauseous though. Hopefully over the next couple years, we will have a plan in place that will ensure the best possible experience for her.
From what I have been told by other mothers with daughters on the spectrum, school usually isn’t too much of an issue until around 6th grade…the time where, for girls, social interaction becomes the center of school rather than class itself. That’s typically where girls on the spectrum struggle with things like social isolation and bullying. For that, we are already assuming that we will homeschool. But now I am just getting way ahead of myself J One worry at a time…
Friday, April 1, 2011
Ignorance
On my husbands latest work trip, he got into a conversation with the woman sitting next to him on the plane. She had asked him if he had ever flown with his kids. He began to explain that his 3 year old has Autism—before he could mention her sensory issues, particularly with loud noises, the woman interrupted him and stated "You know, Autism is so over diagnosed these days." Hmmm.
The ignorance of her statement infuriates me. What are you trying to say lady? That my daughter, who you’ve never met, was most likely inaccurately diagnosed? Nice. Autism is not a diagnosis to me, but more of a description of the way the mind can be wired to think. To me, it’s a description… the same as describing the color of someone’s hair. If someone told me that their child had black hair, the last thing I would do is question that description. Why a complete stranger would feel it appropriate to question a description of my child is beyond me. Even more so when its regarding such a meaningful matter.
I do not believe that Autism is over diagnosed today. In fact, I strongly believe that we are finally truly capable of understanding it, and are able to spot it more accurately. Even as little as 10 years ago, many children in need of help were brushed off as being "weird", "strange" "awkward" or even "bad". They were misunderstood and most went through life being bullied. They were lacking self-understanding and therefore lived with low self-esteem. Life was challenging because their difficulties were not acknowledged. They struggled socially and lacked the ability to know why. It’s no wonder that later, diagnosed as adults, they commonly struggle with issues like depression and anxiety.
Today, these kids have understanding. They receive help in the areas they struggle with and are able to go through life confidently without struggling with identity issues. THIS IS A GREAT THING!!!
I wish that the world could see High Functioning Autism the way we do. Perhaps a new name would ignite more understanding. People hear the word "Autism" and instantly associate it with "Rain Man". They see how "normal" these kids are and instantly want to ignore their very real struggles. Because these kids are capable of functioning in an NT world, people want to just throw them to the sharks, turn a blind eye, and let them figure out life on their own. They don’t want to acknowledge real issues, they want to normalize all the struggles these children endure rather than assist them in overcoming hardships. THIS IS HORRIBLY WRONG. Autism is a SPECTRUM...people on the high functioning end need help as well.
Regardless of the disrespect and ignorance we receive from others who do not understand Autism, we will continue to do what we know in our hearts is right. We will continue to nurture Jenna’s strengths and assist her in overcoming her weaknesses, even if others constantly question our intelligence. Our ability to acknowledge her struggles is a blessing; it should be seen as such. Ignoring who she is, is the wrong way of thinking and she would in no way benefit from it.
My one hope is that the world will educate themselves on not only HFA, but also on females on the spectrum. *Especially those who want to have an opinion on the matter. Nothing gets under my skin more than uneducated statements regarding Autism from extremely opinionated people. Obviously, I am still learning to ignore ignorance from well meaning individuals. Always a work in progress J
The ignorance of her statement infuriates me. What are you trying to say lady? That my daughter, who you’ve never met, was most likely inaccurately diagnosed? Nice. Autism is not a diagnosis to me, but more of a description of the way the mind can be wired to think. To me, it’s a description… the same as describing the color of someone’s hair. If someone told me that their child had black hair, the last thing I would do is question that description. Why a complete stranger would feel it appropriate to question a description of my child is beyond me. Even more so when its regarding such a meaningful matter.
I do not believe that Autism is over diagnosed today. In fact, I strongly believe that we are finally truly capable of understanding it, and are able to spot it more accurately. Even as little as 10 years ago, many children in need of help were brushed off as being "weird", "strange" "awkward" or even "bad". They were misunderstood and most went through life being bullied. They were lacking self-understanding and therefore lived with low self-esteem. Life was challenging because their difficulties were not acknowledged. They struggled socially and lacked the ability to know why. It’s no wonder that later, diagnosed as adults, they commonly struggle with issues like depression and anxiety.
Today, these kids have understanding. They receive help in the areas they struggle with and are able to go through life confidently without struggling with identity issues. THIS IS A GREAT THING!!!
I wish that the world could see High Functioning Autism the way we do. Perhaps a new name would ignite more understanding. People hear the word "Autism" and instantly associate it with "Rain Man". They see how "normal" these kids are and instantly want to ignore their very real struggles. Because these kids are capable of functioning in an NT world, people want to just throw them to the sharks, turn a blind eye, and let them figure out life on their own. They don’t want to acknowledge real issues, they want to normalize all the struggles these children endure rather than assist them in overcoming hardships. THIS IS HORRIBLY WRONG. Autism is a SPECTRUM...people on the high functioning end need help as well.
Regardless of the disrespect and ignorance we receive from others who do not understand Autism, we will continue to do what we know in our hearts is right. We will continue to nurture Jenna’s strengths and assist her in overcoming her weaknesses, even if others constantly question our intelligence. Our ability to acknowledge her struggles is a blessing; it should be seen as such. Ignoring who she is, is the wrong way of thinking and she would in no way benefit from it.
My one hope is that the world will educate themselves on not only HFA, but also on females on the spectrum. *Especially those who want to have an opinion on the matter. Nothing gets under my skin more than uneducated statements regarding Autism from extremely opinionated people. Obviously, I am still learning to ignore ignorance from well meaning individuals. Always a work in progress J
Saturday, March 19, 2011
I Adore This Video
Found this video yesterday and was happy to see someone with our same perspective. Beautiful.
Friday, March 18, 2011
Language
I always mention that Jenna needs to be taught what comes natural to other children. Today, I was reminded of a great example of just that. Our youngest daughter Lexi, just turned 2 a couple weeks ago. Today she asked me "What’s your name?" I answered and then asked her what her name was. I was taken back when she responded "My name is Lexi!" This might seem like nothing, but to me, it was breathtaking.
Jenna could not answer that question until right before she turned 3. It took MONTHS of practicing before she understood that after that question was asked, she should reply with her name. She would respond to the question by simply repeating it back to us. This was very difficult for her to overcome, and a lot of confusion and frustration would prevail. After months of daily practice, she finally answered it, and because of the overwhelming praise she received, has answered it ever since.
This is only one example, but in general, all of the basic "question and answer" parts of our language have had to be taught to her. With effort on everyones part. Its amazing watching our youngest, who is just 15 months younger than Jenna, naturally pick up language skills the way she does. It is so easy for her. Knowing how hard it has been for Jenna to master those same skills makes me very aware of the distinct differences between the two of them. It also makes me very impressed with Jenna’s dedication to learning these things regardless of the degree of difficulty. It shows that within her lies the drive to do anything, and that quality is priceless.
Jenna could not answer that question until right before she turned 3. It took MONTHS of practicing before she understood that after that question was asked, she should reply with her name. She would respond to the question by simply repeating it back to us. This was very difficult for her to overcome, and a lot of confusion and frustration would prevail. After months of daily practice, she finally answered it, and because of the overwhelming praise she received, has answered it ever since.
This is only one example, but in general, all of the basic "question and answer" parts of our language have had to be taught to her. With effort on everyones part. Its amazing watching our youngest, who is just 15 months younger than Jenna, naturally pick up language skills the way she does. It is so easy for her. Knowing how hard it has been for Jenna to master those same skills makes me very aware of the distinct differences between the two of them. It also makes me very impressed with Jenna’s dedication to learning these things regardless of the degree of difficulty. It shows that within her lies the drive to do anything, and that quality is priceless.
Thursday, March 17, 2011
Wednesday, March 16, 2011
Autism Is Not a Curse
I don’t like the way Autism is portrayed in our society. I think that most of what we see for "Autism Awareness" makes it look like a scary problem that needs to be fixed. A curse. *Most of the children today being diagnosed with Autism are on the high functioning end. Yet, society paints this picture of an Autism diagnosis meaning low functioning and unable to function in this world. Its negative association leads to severe misunderstanding.
Just You Tube videos from Autism Speaks and see how it is made to look like a disease that is plaguing our children. When we first got the diagnosis, we were sadly misled by similar messages. This is the reason the diagnosis was initially so devastating.
When speaking of NT children, we do not address the negetive things to describe them. The negetive behaviors they have and the trouble they get into do not define who they are. The same should be applied when speaking of someone with Autism.
I have written of struggles that we face with Jenna having Autism…but that is so that other parents of Autistic children can see that they are not alone, and what they experience is normal in its own right. I am not writing any of it for pity. Do not pity Jenna or our family. The struggles we face as a family are real, but they are not "worse" than the issues that arise parenting a Neurotypical child; They are just different.
If I wanted to, I could write a book on the struggles of raising an NT child. I could write of the terrible 2’s, stubbornness, and defiance…but everyone already knows of these issues. Most parents of NT children experience all of that and then some. Having a Neurotypical child, you can vent to anyone and hear his or her experiences to help you navigate through parenting your NTchild. There aren’t many resources for the parents of children with Autism to air similar frustrations to likeminded people. Know that when I vent about Jenna not talking for a day, I could equally complain about my NT child doing the "normal" frustrating things that are difficult to deal with in their own way. The main difference is that the issues that arise with Jenna are not issues we are naturally prepared to face as parents. They are new to us and to everyone we know. We have to learn how to address them rather than rely on our parental instincts. That is what makes them worth mentioning.
I don’t want to paint a false picture of our family. Jenna is not our "problem" child who is mostly a source of frustration. We don’t wish that she were different. I can honestly say, that in a day, our sweet NT Lexi stirs up more trouble and frustrations than our Jenna does. But again, the reason it’s important to speak of Jenna’s issues is to raise awareness and to help others who are new to these experiences. It is equally important for those of you without a child with Autism in your life to know that Autism is not a horrible thing to feel sorry for. I think the different way of thinking is pretty amazing, and I also think that it should be recognized as such. Are there struggles? DEFINETLY! But again, having an NT child isn’t always the most pleasant experience either. Also, I think its extremely important to recognize the struggles a child with Autism endures…if you cant recognize the hurdles they overcome, you will never be able to recognize the true greatness they possess.
I don’t want to be part of the propaganda that tells you how terrible Autism is and that we should be searching for a cure. If you take away the things that make Jenna Autistic, you would be taking away who she is. Who she is, is a brilliant little girl who we love deeply. I think it is impossible to remove the Autism without changing the individual. The biggest concern we have for her is other kids not accepting her unique way of thinking. But when stated like that, it seems more to me that it’s the NT kids who are in need of a change.
I do think that we should focus on helping our kid’s maneuver through this NT world, giving them the tools to succeed, but I don’t think the goal should ever be to change them. I think our main goal should be to make people aware of the good things Autism brings, and to strive for having a Neuro-Diverse society, not a Neurotypical one. We can’t do that by feeling sorry for those with HFA or their families. But we can do it by teaching our NT children that being the same as everyone else is not necessary, and also by teaching them the great gift of acceptance and understanding—the two things that those with Autism and their families want from the world.
Just You Tube videos from Autism Speaks and see how it is made to look like a disease that is plaguing our children. When we first got the diagnosis, we were sadly misled by similar messages. This is the reason the diagnosis was initially so devastating.
When speaking of NT children, we do not address the negetive things to describe them. The negetive behaviors they have and the trouble they get into do not define who they are. The same should be applied when speaking of someone with Autism.
I have written of struggles that we face with Jenna having Autism…but that is so that other parents of Autistic children can see that they are not alone, and what they experience is normal in its own right. I am not writing any of it for pity. Do not pity Jenna or our family. The struggles we face as a family are real, but they are not "worse" than the issues that arise parenting a Neurotypical child; They are just different.
If I wanted to, I could write a book on the struggles of raising an NT child. I could write of the terrible 2’s, stubbornness, and defiance…but everyone already knows of these issues. Most parents of NT children experience all of that and then some. Having a Neurotypical child, you can vent to anyone and hear his or her experiences to help you navigate through parenting your NTchild. There aren’t many resources for the parents of children with Autism to air similar frustrations to likeminded people. Know that when I vent about Jenna not talking for a day, I could equally complain about my NT child doing the "normal" frustrating things that are difficult to deal with in their own way. The main difference is that the issues that arise with Jenna are not issues we are naturally prepared to face as parents. They are new to us and to everyone we know. We have to learn how to address them rather than rely on our parental instincts. That is what makes them worth mentioning.
I don’t want to paint a false picture of our family. Jenna is not our "problem" child who is mostly a source of frustration. We don’t wish that she were different. I can honestly say, that in a day, our sweet NT Lexi stirs up more trouble and frustrations than our Jenna does. But again, the reason it’s important to speak of Jenna’s issues is to raise awareness and to help others who are new to these experiences. It is equally important for those of you without a child with Autism in your life to know that Autism is not a horrible thing to feel sorry for. I think the different way of thinking is pretty amazing, and I also think that it should be recognized as such. Are there struggles? DEFINETLY! But again, having an NT child isn’t always the most pleasant experience either. Also, I think its extremely important to recognize the struggles a child with Autism endures…if you cant recognize the hurdles they overcome, you will never be able to recognize the true greatness they possess.
I don’t want to be part of the propaganda that tells you how terrible Autism is and that we should be searching for a cure. If you take away the things that make Jenna Autistic, you would be taking away who she is. Who she is, is a brilliant little girl who we love deeply. I think it is impossible to remove the Autism without changing the individual. The biggest concern we have for her is other kids not accepting her unique way of thinking. But when stated like that, it seems more to me that it’s the NT kids who are in need of a change.
I do think that we should focus on helping our kid’s maneuver through this NT world, giving them the tools to succeed, but I don’t think the goal should ever be to change them. I think our main goal should be to make people aware of the good things Autism brings, and to strive for having a Neuro-Diverse society, not a Neurotypical one. We can’t do that by feeling sorry for those with HFA or their families. But we can do it by teaching our NT children that being the same as everyone else is not necessary, and also by teaching them the great gift of acceptance and understanding—the two things that those with Autism and their families want from the world.
And the Oscar Goes To...
Why is it that our children who are on the spectrum can sometimes put on such a great act of neurotypical behavior for other adults with only small glimpses of Autism, then immediately upon being home without visitors, can resort to such extreme "autistic" behavior?
This was recently brought up on one of my Autism forums. The overwhelming consensus is that our children feel safe to be themselves when they are surrounded by the comfort of their home and family. We all can relate to the feeling of being made to feel crazy because the behavior we speak of isn’t demonstrated the way we experience it daily.
On one hand, this is a great ability. It is promising that our children can go out into the world and act "typical" with few differences. It is one of their strengths, a method of surviving.
On the other hand, it can be extremely frustrating. You want your child to be able to go out into the world; yet sometimes it feels that everyone else in the world gets to see a part of your child that is foreign to you. The part of them that you strive so hard to help them become is also the part of them you rarely experience yourself, at least not regularly. Some of us, including Addison and I, are fortunate enough to see this side of their child throughout each day, with flurries of frustration and difficult behaviors and situations sporadically throughout the day. Others parents, like many I have talked to, never or rarely, get to see their child in this light.
Regardless of how regular this behavior is, it’s difficult to ignore the hurt that it ignites. You are the one who loves your child unconditionally and who puts in the effort to help them advance. But you are often not the person who gets to experience the greatness of all the effort. Instead, you get to witness them, from afar, act as if they have no hardships or struggles.
I can’t lie—it’s heartbreaking. I don’t like that I can experience long days of no real language or communication. I don’t like that I watch my daughter scream nonsense and jump around seemingly without purpose, then to hear that she was able to hold it together perfectly for someone she hardly knows. It makes everything we endure in our household seem non-existent to those who do not live it, therefore minimizing the real struggles we families endure.
It is a hard place to be in. I guess that if I had to choose though, I’d rather her be able to hold it together while out in this world verse being excellent in the home and not being able to manage herself in the "real world". Yet still, it is a difficult concept to accept.
This is a very real issue that many of us parents face. I can say that we should all feel special and confident in the fact that our children can be themselves around us. I can tell you that it is a good thing that they are able to "act". But I also know that you already tell yourself the same thing; and it doesn’t make it hurt any less.
I can’t say that this will ever go away. Many of the moms I have spoken to experience this with their autistic children who are now adults, and it never changed. This is just another hurdle we must face in parenting a child with Autism. We could have self pity and wish it were different. But its not and it may never be. We have to learn to not take this personally and accept the reality. I believe that once we do fully take that step of accepting this reality, we will find ourselves in the position of having a deeper relationship with our child than we ever dreamed.
Our children do love us; we are their rocks, their stability. And yes, it is because of the trust and love they feel for us that they allow us to experience the raw, unedited version of their reality. We probably should feel special that we know them and not the person they can pretend to be. Its not the way any of us imagined it, but if we let go of the way we think it "should be" and accept the way it is, therein lies the key to having and maintaining a beautiful relationship with our amazingly beautiful children J
This was recently brought up on one of my Autism forums. The overwhelming consensus is that our children feel safe to be themselves when they are surrounded by the comfort of their home and family. We all can relate to the feeling of being made to feel crazy because the behavior we speak of isn’t demonstrated the way we experience it daily.
On one hand, this is a great ability. It is promising that our children can go out into the world and act "typical" with few differences. It is one of their strengths, a method of surviving.
On the other hand, it can be extremely frustrating. You want your child to be able to go out into the world; yet sometimes it feels that everyone else in the world gets to see a part of your child that is foreign to you. The part of them that you strive so hard to help them become is also the part of them you rarely experience yourself, at least not regularly. Some of us, including Addison and I, are fortunate enough to see this side of their child throughout each day, with flurries of frustration and difficult behaviors and situations sporadically throughout the day. Others parents, like many I have talked to, never or rarely, get to see their child in this light.
Regardless of how regular this behavior is, it’s difficult to ignore the hurt that it ignites. You are the one who loves your child unconditionally and who puts in the effort to help them advance. But you are often not the person who gets to experience the greatness of all the effort. Instead, you get to witness them, from afar, act as if they have no hardships or struggles.
I can’t lie—it’s heartbreaking. I don’t like that I can experience long days of no real language or communication. I don’t like that I watch my daughter scream nonsense and jump around seemingly without purpose, then to hear that she was able to hold it together perfectly for someone she hardly knows. It makes everything we endure in our household seem non-existent to those who do not live it, therefore minimizing the real struggles we families endure.
It is a hard place to be in. I guess that if I had to choose though, I’d rather her be able to hold it together while out in this world verse being excellent in the home and not being able to manage herself in the "real world". Yet still, it is a difficult concept to accept.
This is a very real issue that many of us parents face. I can say that we should all feel special and confident in the fact that our children can be themselves around us. I can tell you that it is a good thing that they are able to "act". But I also know that you already tell yourself the same thing; and it doesn’t make it hurt any less.
I can’t say that this will ever go away. Many of the moms I have spoken to experience this with their autistic children who are now adults, and it never changed. This is just another hurdle we must face in parenting a child with Autism. We could have self pity and wish it were different. But its not and it may never be. We have to learn to not take this personally and accept the reality. I believe that once we do fully take that step of accepting this reality, we will find ourselves in the position of having a deeper relationship with our child than we ever dreamed.
Our children do love us; we are their rocks, their stability. And yes, it is because of the trust and love they feel for us that they allow us to experience the raw, unedited version of their reality. We probably should feel special that we know them and not the person they can pretend to be. Its not the way any of us imagined it, but if we let go of the way we think it "should be" and accept the way it is, therein lies the key to having and maintaining a beautiful relationship with our amazingly beautiful children J
Monday, March 14, 2011
The Beauty of Autism
"You laugh at me because I’m different…I laugh at you because you’re all the same!" I don’t know where that quote comes from, but have heard it said by people on the spectrum. I think its AWESOME J I hope that Jenna will take that attitude and embrace her differences as gifts. Although she may be "different", who’s to say that different isn’t "better"? Her ability to view things differently may very well be the same thing that takes her further in life than her NT counterparts. While they are stuck viewing problems and trying to solve them in the same way as the person next to them, her unique perspective may very well give her the advantage of actually solving those same problems. This is a gift. This is what I want her to know about herself. That is the confidence we will forever strive to instill in her. This is the beauty of Autism.
Sunday, March 13, 2011
Pink Bubble Wrap....
can provide hours of entertainment !
On sale at Walmart for $1, i think we'll stock up :)
On sale at Walmart for $1, i think we'll stock up :)
Not Seeing and Not Recognizing are NOT the Same
"Your child doesn’t have real Autism." "He/she looks normal to me." "They try to put a label on everything these days." "A little discipline and he/she wouldn’t behave that way." "All kids are like that." "He’ll/she’ll grow out of it."
If you have a child who has high functioning Autism, you have more than likely received one or more of these comments at some point after getting a diagnosis. It's almost an unwritten rule of initiation into the world of HFA. Often it can come from loving family, close friends, or even complete strangers. Try to remain calm J
"Children with high functioning autism or Asperger's Syndrome may interact very well with adults, but struggle with appropriately initiating peer interaction or maintaining interest. Sometimes, children with autism do not notice if a peer or playmate loses interest, or even wanders away. The unwritten social rules seem to be confusing, and interpreting social comments, facial expressions, tone of voice, or body language can be similar to trying to interpret a foreign language. A general lack of fear or fearlessness may be evident, and children with autism may talk openly with strangers, hug strangers, invade people's personal space, bump into peers in lines, touch or climb people inappropriately, or have excessive or a complete lack of separation anxiety from parents or caregivers" (Mayes, 2008). Mayes, S.D. (2008). Checklist for autism in young children. Retrieved March 12, 2011
Read more: http://www.disabled-world.com/artman/publish/article_2255.shtml#ixzz1GRpjscL8
I find the above to be extremely interesting and can see all of this in Jenna. Perhaps that is why when an autism diagnosis is given to a child on the high functioning end of the spectrum, many adults in our lives tend to dismiss the diagnosis. This is such an important fact that I couldn’t go without mentioning. That doubt and disregard is something that nearly every parent with a child diagnosed with HFA has dealt with at some point or another after their child received the diagnosis. The issues that we know to be problematic are not always evident to the other adults who interact with them because the child typically can interact well with adults. Some people will never "see" what you know to be true.
Dealing with skepticism and disbelief of a diagnosis can be one of the more challenging things we parents experience. It is easy to get angry with every person in the world who does not see what we see, or who question our reality. I think an important thing to remember is something that I often hear, "There is a difference between not seeing it, and not recognizing it". I urge you to keep that quote in your head for the times you will be told that someone doesn’t "see" any of the issues your child struggles with. I truly do not believe that any of the people who say such things are aware of the deep impact their words have, or how difficult it is for parents to have their very real struggles disregarded.
Give those people the benefit of the doubt, especially if they are people who are close to you. They may never truly understand, but at the end of the day, does it really matter? Save your energy for the work you put in daily helping your child advance. This is something that I struggle with, definitely a work in progress, but I challenge all of my fellow parents of HFA kids to do the same. You can’t control the opinion of others, but you can control the affect that you let it have on you. It is an extremely difficult task, but unless you want to bury your head in the sand and cut off all contact with the outside world, you will eventually have to come to terms with the fact that some people may never see your child’s struggles. Know in your heart that even if it hurts and angers you, it isn’t necessary that they understand; even more importantly, they are more than likely not intentionally trying to hurt or anger you.
If you have a child who has high functioning Autism, you have more than likely received one or more of these comments at some point after getting a diagnosis. It's almost an unwritten rule of initiation into the world of HFA. Often it can come from loving family, close friends, or even complete strangers. Try to remain calm J
"Children with high functioning autism or Asperger's Syndrome may interact very well with adults, but struggle with appropriately initiating peer interaction or maintaining interest. Sometimes, children with autism do not notice if a peer or playmate loses interest, or even wanders away. The unwritten social rules seem to be confusing, and interpreting social comments, facial expressions, tone of voice, or body language can be similar to trying to interpret a foreign language. A general lack of fear or fearlessness may be evident, and children with autism may talk openly with strangers, hug strangers, invade people's personal space, bump into peers in lines, touch or climb people inappropriately, or have excessive or a complete lack of separation anxiety from parents or caregivers" (Mayes, 2008). Mayes, S.D. (2008). Checklist for autism in young children. Retrieved March 12, 2011
Read more: http://www.disabled-world.com/artman/publish/article_2255.shtml#ixzz1GRpjscL8
I find the above to be extremely interesting and can see all of this in Jenna. Perhaps that is why when an autism diagnosis is given to a child on the high functioning end of the spectrum, many adults in our lives tend to dismiss the diagnosis. This is such an important fact that I couldn’t go without mentioning. That doubt and disregard is something that nearly every parent with a child diagnosed with HFA has dealt with at some point or another after their child received the diagnosis. The issues that we know to be problematic are not always evident to the other adults who interact with them because the child typically can interact well with adults. Some people will never "see" what you know to be true.
Dealing with skepticism and disbelief of a diagnosis can be one of the more challenging things we parents experience. It is easy to get angry with every person in the world who does not see what we see, or who question our reality. I think an important thing to remember is something that I often hear, "There is a difference between not seeing it, and not recognizing it". I urge you to keep that quote in your head for the times you will be told that someone doesn’t "see" any of the issues your child struggles with. I truly do not believe that any of the people who say such things are aware of the deep impact their words have, or how difficult it is for parents to have their very real struggles disregarded.
Give those people the benefit of the doubt, especially if they are people who are close to you. They may never truly understand, but at the end of the day, does it really matter? Save your energy for the work you put in daily helping your child advance. This is something that I struggle with, definitely a work in progress, but I challenge all of my fellow parents of HFA kids to do the same. You can’t control the opinion of others, but you can control the affect that you let it have on you. It is an extremely difficult task, but unless you want to bury your head in the sand and cut off all contact with the outside world, you will eventually have to come to terms with the fact that some people may never see your child’s struggles. Know in your heart that even if it hurts and angers you, it isn’t necessary that they understand; even more importantly, they are more than likely not intentionally trying to hurt or anger you.
Friday, March 11, 2011
The Way it Sadly Is...
"The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low- functioning means your assets are ignored."
Laura Tisoncik (from Circle of Moms blog)
Laura Tisoncik (from Circle of Moms blog)
A Built in Best Friend
I am very thankful that Jenna has Lexi. The two of them teach each other important lesson’s everyday. I think about how crazy we were to want our kids so close in age…we decided to get pregnant again when Jenna was only 6 months old! I strongly believe that that urge was put in our hearts because God knew it was going to be something great.
Last night, we checked on the girls before bed…Jenna had climbed into Lexi’s bed, and they were sleeping together! The love they have for one another is beautiful.Jenna just doesnt relate to other children in any way close to this, it is special.
Lexi teaches Jenna things that we alone could not. Jenna is forced into life lessons that she wouldn’t otherwise be able to get at home. Both of them are, really. If it weren’t for Lexi though, I don’t think that Jenna would be where she is with play skills or other age appropriate skills. As I have said before, Jenna is a great imitator. Lexi will pretend and do original things all day long. Nothing is predictable about her. Because Jenna sees Lexi play this way, Jenna will imitate these things. Although it is clear that she is copying her sister, eventually, it morphs into her doing these things on her own. Being surrounded by this all day every day is so great for her.
Lexi also challenges Jenna. She challenges her to answer questions and respond to her. Her very presence is a nuisance to Jenna’s structure; but because of that, Jenna is learning to deal with change and unpredictable situations. Although Jenna will often want to wander into her own world, Lexi prevents her from being able to zone out for too long. Jenna is intrigued by her, and will often turn her focus onto whatever silly thing Lexi is doing.
They both get important lessons on sharing and taking turns. We all know how difficult those two things can be for children on the spectrum, or even preschoolers in general! They are a great balance to one another. Lexi is social and playful; Jenna is intellectual and has an amazing memory. Lexi admires her big sister and learns things like colors and letters from her (things she would otherwise care less about), and how to have a unique view on how to do things.
I hope that the two of them continue to learn from eachother throughout their lives and forever be great friends. The things they can teach eachother will be great advantages later in life! They are very lucky to have one another J
Last night, we checked on the girls before bed…Jenna had climbed into Lexi’s bed, and they were sleeping together! The love they have for one another is beautiful.Jenna just doesnt relate to other children in any way close to this, it is special.
Lexi teaches Jenna things that we alone could not. Jenna is forced into life lessons that she wouldn’t otherwise be able to get at home. Both of them are, really. If it weren’t for Lexi though, I don’t think that Jenna would be where she is with play skills or other age appropriate skills. As I have said before, Jenna is a great imitator. Lexi will pretend and do original things all day long. Nothing is predictable about her. Because Jenna sees Lexi play this way, Jenna will imitate these things. Although it is clear that she is copying her sister, eventually, it morphs into her doing these things on her own. Being surrounded by this all day every day is so great for her.
Lexi also challenges Jenna. She challenges her to answer questions and respond to her. Her very presence is a nuisance to Jenna’s structure; but because of that, Jenna is learning to deal with change and unpredictable situations. Although Jenna will often want to wander into her own world, Lexi prevents her from being able to zone out for too long. Jenna is intrigued by her, and will often turn her focus onto whatever silly thing Lexi is doing.
They both get important lessons on sharing and taking turns. We all know how difficult those two things can be for children on the spectrum, or even preschoolers in general! They are a great balance to one another. Lexi is social and playful; Jenna is intellectual and has an amazing memory. Lexi admires her big sister and learns things like colors and letters from her (things she would otherwise care less about), and how to have a unique view on how to do things.
I hope that the two of them continue to learn from eachother throughout their lives and forever be great friends. The things they can teach eachother will be great advantages later in life! They are very lucky to have one another J
Thursday, March 10, 2011
Self Taught Genius :)
Jenna has now mastered writing (and spelling on her own) the words "MOM" "DAD" "PAPA" "JENNA" and "ON" ! she keeps asking me to spell new words for her so that she can write them...she is amazing :) This is only a couple days after her first written word...if she keeps this up, she will be reading by 3 1/2!
"Even the most well-meaning individuals may dispute a diagnosis of AS...
in an effort to simplify or normalize the situation."
Rudy Simone, Author of Aspergirls from a Foreword for Aspergers in Pink
"Ironically, one of the biggest challenges in being high functioning lies in convincing others we have challenges."
Rudy Simone, Author of Aspergirls from a Foreword for Aspergers in Pink
"Ironically, one of the biggest challenges in being high functioning lies in convincing others we have challenges."
Tuesday, March 8, 2011
Therapies and Other Programs
When I write of our experience and opinions on behavioral therapies, I am not speaking for every child on the spectrum. Although it may sound as if I am against them, I do see the extreme benefits these therapies have had on other children, and I believe that each parent should do whatever it is that helps their child advance.
When we first started out on this journey, we thought biomedicine was the answer. It all made sense. But through experiences of trial and error, we no longer believe this theory as we once did. Maybe there are benefits, however, we weren’t able to discover them for ourselves. I think that we wanted to believe they were working, so every advancement we attributed to biomedicine. One thing that we did find to work well was the GFCF diet. This is because Jenna had intolerances to gluten and dairy though. Had she not been intolerant of those things, we would not have seen the results that we saw. Atleast, that is what we believe.
ABA was the next big step we were expected to take. It was expensive, $1800 a month. We had to make an informed decision before committing to that huge financial responsibility. I started researching and watching ABA sessions online. It didn’t sit well with me. We just didn’t feel that that was what Jenna needed. The school talked about teaching Jenna things like colors and shapes, but these were all things that she already knew. Children on the spectrum do not learn the same as neurotypical children. I felt that all of Jennas life, we already discovered unique ways of teaching her things. This was not something we needed help with. The school insisted that if they discovered Jenna did already know these things, they would move on to the next "lesson". We thought that was simply wasting time. Ultimately, we felt like it wasn’t going to help in the areas Jenna did need help in. Also, we felt that it wasn’t the way we wanted Jenna to spend her early years…in a room with someone doing one on one therapy. It wasn’t for us.
It was at that time that we found a preschool that mixed in children on the spectrum with NT children. The whole school was based on DTT techniques and it would give Jenna the opportunity to interact with other children 3 half days a week. We enrolled her very quickly. She did very well in this atmosphere. Jenna is the queen of imitation. Being around NT kids her age had a great affect on her. There was a "shadow" in class with her to monitor her and redirect her if she needed it. She was doing great.
One thing that I began to notice is that after I picked Jenna up from school, she would have severe episodes of stimming. She would bounce off the walls when we walked in the door…screaming, flapping her hands and walking on her toes. It was unusual for her to be so extreme. We think that it was because she was bottling it all up during her 3 hours at school, so she needed to release it as soon as she got home. It felt like we were making life worse, even though she was on her best behavior at school.
We were still struggling with issues like taking Jenna to the grocery store. She would scream and freak out for reasons we couldn’t figure out…the noises, possibly the lights. The school could not help us with those things, only report how well she was doing in class intellectually. Also, even though she was giving scripted responses at school, at home she would just speak gibberish. We had to make the difficult decision of pulling her out of that school and began to focus on the areas she was having trouble in.
I also felt that the program leaders of this school weren’t really listening to us. You would think that as a program dedicated to autistic children, they wouldn’t be so taken back by Jennas intellect. They would be surprised at things she would say, but they didn’t get the fact that she said those same things all day every day. I got the feeling that the school wasn’t used to working with children with high functioning autism…and had very little experience with females on the spectrum period.
So off to speech therapy we went. This was actually the best encounter with a professional that we had. She herself had a child on the spectrum who reminded her very much of Jenna when he was younger. This woman was good. She wasn’t fooled by Jenna’s scripted responses and was able to point out her many deficiencies with semantics and pragmatics. A lot of what they did in their sessions was very similar to what we did on a daily basis at home. We also are big fans of the Teach 2 Talk series, which are identical with what she was doing in speech therapy. Insurance later declined covering her speech therapy. We made the decision to stop it all together because of the fact that it wasn’t anything new to what we were already doing.
Now, had we stuck with any of the aforementioned programs, I am sure we would be singing praise to whichever we had chosen. When we first got the diagnosis, we didn’t know how Jenna would progress. All of the programs promised great results…what we found was that by working with her in the home by ourselves, she has met those same goals each program hoped to meet. None of it happened "naturally", we had to put in the effort.
Jenna now qualifies for special education preschool through our school system. We are choosing to not enroll her. As I mentioned before, Jenna is a great imitator. We feel that it would be detrimental to her progression if she were to be surrounded by children dealing with their own issues. We have witnessed this with our own eyes; she copies everything. This is not the case for every child on the spectrum, but it is Jenna’s survival mechanism. This is why it is so important for us to enroll her in a regular preschool program next year. Intellectually, she surpasses her peers. But she needs to develop socially, and we believe that she can only do that by interacting and imitating her NT peers.
Are we doing the "right" thing? No one really knows for sure if they are choosing the right "therapy" for their child. You just do what you feel in your heart is right, and hope to God that you chose the right path. But I guess that’s just being a parent in general. I am very happy that what we are doing seems to be working so well. Jenna is developing beautifully and I am so glad that we are a part of that process.
When we first started out on this journey, we thought biomedicine was the answer. It all made sense. But through experiences of trial and error, we no longer believe this theory as we once did. Maybe there are benefits, however, we weren’t able to discover them for ourselves. I think that we wanted to believe they were working, so every advancement we attributed to biomedicine. One thing that we did find to work well was the GFCF diet. This is because Jenna had intolerances to gluten and dairy though. Had she not been intolerant of those things, we would not have seen the results that we saw. Atleast, that is what we believe.
ABA was the next big step we were expected to take. It was expensive, $1800 a month. We had to make an informed decision before committing to that huge financial responsibility. I started researching and watching ABA sessions online. It didn’t sit well with me. We just didn’t feel that that was what Jenna needed. The school talked about teaching Jenna things like colors and shapes, but these were all things that she already knew. Children on the spectrum do not learn the same as neurotypical children. I felt that all of Jennas life, we already discovered unique ways of teaching her things. This was not something we needed help with. The school insisted that if they discovered Jenna did already know these things, they would move on to the next "lesson". We thought that was simply wasting time. Ultimately, we felt like it wasn’t going to help in the areas Jenna did need help in. Also, we felt that it wasn’t the way we wanted Jenna to spend her early years…in a room with someone doing one on one therapy. It wasn’t for us.
It was at that time that we found a preschool that mixed in children on the spectrum with NT children. The whole school was based on DTT techniques and it would give Jenna the opportunity to interact with other children 3 half days a week. We enrolled her very quickly. She did very well in this atmosphere. Jenna is the queen of imitation. Being around NT kids her age had a great affect on her. There was a "shadow" in class with her to monitor her and redirect her if she needed it. She was doing great.
One thing that I began to notice is that after I picked Jenna up from school, she would have severe episodes of stimming. She would bounce off the walls when we walked in the door…screaming, flapping her hands and walking on her toes. It was unusual for her to be so extreme. We think that it was because she was bottling it all up during her 3 hours at school, so she needed to release it as soon as she got home. It felt like we were making life worse, even though she was on her best behavior at school.
We were still struggling with issues like taking Jenna to the grocery store. She would scream and freak out for reasons we couldn’t figure out…the noises, possibly the lights. The school could not help us with those things, only report how well she was doing in class intellectually. Also, even though she was giving scripted responses at school, at home she would just speak gibberish. We had to make the difficult decision of pulling her out of that school and began to focus on the areas she was having trouble in.
I also felt that the program leaders of this school weren’t really listening to us. You would think that as a program dedicated to autistic children, they wouldn’t be so taken back by Jennas intellect. They would be surprised at things she would say, but they didn’t get the fact that she said those same things all day every day. I got the feeling that the school wasn’t used to working with children with high functioning autism…and had very little experience with females on the spectrum period.
So off to speech therapy we went. This was actually the best encounter with a professional that we had. She herself had a child on the spectrum who reminded her very much of Jenna when he was younger. This woman was good. She wasn’t fooled by Jenna’s scripted responses and was able to point out her many deficiencies with semantics and pragmatics. A lot of what they did in their sessions was very similar to what we did on a daily basis at home. We also are big fans of the Teach 2 Talk series, which are identical with what she was doing in speech therapy. Insurance later declined covering her speech therapy. We made the decision to stop it all together because of the fact that it wasn’t anything new to what we were already doing.
Now, had we stuck with any of the aforementioned programs, I am sure we would be singing praise to whichever we had chosen. When we first got the diagnosis, we didn’t know how Jenna would progress. All of the programs promised great results…what we found was that by working with her in the home by ourselves, she has met those same goals each program hoped to meet. None of it happened "naturally", we had to put in the effort.
Jenna now qualifies for special education preschool through our school system. We are choosing to not enroll her. As I mentioned before, Jenna is a great imitator. We feel that it would be detrimental to her progression if she were to be surrounded by children dealing with their own issues. We have witnessed this with our own eyes; she copies everything. This is not the case for every child on the spectrum, but it is Jenna’s survival mechanism. This is why it is so important for us to enroll her in a regular preschool program next year. Intellectually, she surpasses her peers. But she needs to develop socially, and we believe that she can only do that by interacting and imitating her NT peers.
Are we doing the "right" thing? No one really knows for sure if they are choosing the right "therapy" for their child. You just do what you feel in your heart is right, and hope to God that you chose the right path. But I guess that’s just being a parent in general. I am very happy that what we are doing seems to be working so well. Jenna is developing beautifully and I am so glad that we are a part of that process.
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