I recently posted regarding the "benefits " of autism. Here is the other side of the coin. After having a great day with Robbie at Chuck E Cheese, when asked what his favorite game was, he could not answer. The entire ride to and from consisted of Robbie scripting Monsters, Inc. and Monsters University. This means running the movie lines through his head and repeating what he could. If there is a part he can not speak the actual words, he will make up a phrase and continue until he knows the language. When we came home Robbie could not describe his experience in any way to the rest of his family. When Lexi came home that day from going to the movies with Dad she gave me the complete run down of the entire movie. I spoke to his home therapist and her response was " recall is tough for these kids. After the event is over recalling specifics tends not to happen because- the event is over. He may not be able to recall events until he is a teenager."
Additionally while at Chuck E Cheese there was a bit of stimming behavior. Rob became obsessed with a Jurassic Park game. "Dinosaur game, Dinosaur game, Dinosaur game" and then the jumping up and down, mild flapping and "EEEEEEE." There were other kids playing the dinosaur game at the time and one little girl- slightly younger than Robbie just stared at him. I don't think he noticed, but it made me sad for things to come.
Another challenge is never knowing what his behavior will like. If I expect he'll be fine in a situation, many times he is not and vice versa. A friend of ours was having a large party a few months ago. I expressed concern over the amount of people, not knowing most of them and the lack of escape routes. ( The party was over an hour away.) He'll be fine , was her response. I know that was meant to put me at ease- but the reality is he may not have been fine...............or he could have been. Again I know many parents experience the same struggles with neuro-typical kids- however I believe the melt downs and "bad" behavior for those on the spectrum is more severe. I also know we as a family need to be more brave and challenge ourselves to be in these situations. However sometimes we just don't have the energy and want to stay home.
Behavior modification is also different. Robbie's teacher is out for the week and had put a behavior plan in his clip board. His home therapist brought it to my attention by asking if Robbie had displayed bad behaviors at school? While there have a few bad days , for the most part he has come home with good reports. Good was circled. That means he was good, right? I began to wonder if the standard of behavior is slightly different for those with Autism. My kindergartner gets a blue star for "good" behavior and the stars change color as bad behavior escalates. However for her, bad behavior is talking while the teacher is talking. (I am not making light of that, you should NOT talk over your teacher.) For Robbie, bad behavior was defined as" rude, nasty or aggressive." Telling the teacher to leave, or repeating what they are saying. The standards seem a little different- because they have to be. Teachers and aids in Robbie's classroom (kindergarten through grade 4) are regularly taught how to contain a child. I doubt that strategy is used very often in Lexi's kindergarten class.
I guess my point is this, things are just different. I hope that is not used as an excuse for bad behavior however I hope it is used for understanding in certain situations. So if you see a child jumping up and down, flapping, saying "EEEEEEE", don't be alarmed. Smile. Smile at that child and please smile at that child's parents. They really do appreciate it.:)
Tuesday, November 26, 2013
Monday, November 25, 2013
The Benefits of Autism
I hope those who know me- know the title- "The benefits of Autism" is tongue in cheek-and meant to be taken lightly. Last night Rob and I were talking about the weekend and referred to it as a triple win.
1) Robbie got a haircut with minimal resistance! Everything takes time for Robbie. This has been an on going battle for us. Dad is still the only one who can cut his hair(-usually with a moderate amount of screaming, crying, running away, etc.) The only exception being a special needs hair dresser that goes into Robbie's classroom, occasionally. (Nice job Dad!!)
2) Robbie wore a long sleeve t-shirt (again- nice job Dad!!) and a short sleeve t-shirt that was not white!! This has also been a battle. I can count on one hand the amount of times he has worn long sleeves this season so far. Today not being one of them. Clothes in general are a difficult subject with Robbie- like many other kids. He will not wear jeans or any pants with snaps or buttons at the waist. This could be a sensory issue or could have began with stomach problems he has always had. He wears t-shirts, period. Preferably white t-shirts- Nothing with a collar, or generally speaking, sleeves. It is actually something we are beginning to work on at home with his home based ABA therapist.
3) Robbie went to Chuck E Cheese and was fantastic! I assume most parents, like myself dread places like Chuck E Cheese, The FunPlex. etc. These places are especially difficult when you have a child on the spectrum. They are loud, bright, crowded- all things that many of these kids struggle with. Robbie was fantastic. He was well behaved. The anxiety that he struggles with made him stick close to me. He listened and followed directions. When it was time to go home- there was no debate or worse- meltdown. He had a great time - and I had a great time watching the smile on the face.
A little later at home Robbie took his shoes off and immediately put them in the closet (where we keep shoes.) If this were Lexi, I would ask multiple times for her to put the shoes away. Robbie knows everything has a place, and follows suit. This small task made me smile and comment- "a benefit of Autism." Even more than that is the joy over the "small" victories. With any special needs child- the victories are even more special. Not to take away from our kindergartener who finally made it through a full week of school without tears. This was a great accomplishment for my very sensitive and emotional little girl ( who loves school by the way.) Or our 4 month old who slept 7 hours straight last night! Yeah Timmy!! But there is something so rewarding in watching your son who has struggled, and continues to, with some of the simplest tasks, overcome. Even if it is only for the weekend :)
1) Robbie got a haircut with minimal resistance! Everything takes time for Robbie. This has been an on going battle for us. Dad is still the only one who can cut his hair(-usually with a moderate amount of screaming, crying, running away, etc.) The only exception being a special needs hair dresser that goes into Robbie's classroom, occasionally. (Nice job Dad!!)
2) Robbie wore a long sleeve t-shirt (again- nice job Dad!!) and a short sleeve t-shirt that was not white!! This has also been a battle. I can count on one hand the amount of times he has worn long sleeves this season so far. Today not being one of them. Clothes in general are a difficult subject with Robbie- like many other kids. He will not wear jeans or any pants with snaps or buttons at the waist. This could be a sensory issue or could have began with stomach problems he has always had. He wears t-shirts, period. Preferably white t-shirts- Nothing with a collar, or generally speaking, sleeves. It is actually something we are beginning to work on at home with his home based ABA therapist.
3) Robbie went to Chuck E Cheese and was fantastic! I assume most parents, like myself dread places like Chuck E Cheese, The FunPlex. etc. These places are especially difficult when you have a child on the spectrum. They are loud, bright, crowded- all things that many of these kids struggle with. Robbie was fantastic. He was well behaved. The anxiety that he struggles with made him stick close to me. He listened and followed directions. When it was time to go home- there was no debate or worse- meltdown. He had a great time - and I had a great time watching the smile on the face.
A little later at home Robbie took his shoes off and immediately put them in the closet (where we keep shoes.) If this were Lexi, I would ask multiple times for her to put the shoes away. Robbie knows everything has a place, and follows suit. This small task made me smile and comment- "a benefit of Autism." Even more than that is the joy over the "small" victories. With any special needs child- the victories are even more special. Not to take away from our kindergartener who finally made it through a full week of school without tears. This was a great accomplishment for my very sensitive and emotional little girl ( who loves school by the way.) Or our 4 month old who slept 7 hours straight last night! Yeah Timmy!! But there is something so rewarding in watching your son who has struggled, and continues to, with some of the simplest tasks, overcome. Even if it is only for the weekend :)
Wednesday, November 6, 2013
Learning about Autism
Just as the title of this blog says- we are living and learning about autism spectrum disorder every day. I read the book "Why I Jump " recently which was written by an autistic teenager and found it really interesting. One of the topics discussed was the concept of time. Many with autism have a hard time with this concept. Robbie seems to have a lot of anxiety when it comes to time. For example I can't really prepare him for something that will happen next week or even tomorrow because that does not make sense to him. If I mention we will be going to Grandmom's next weekend, he thinks we're going today and does not stop asking- when are we going?????? It's different than his 5 year old sister who uses yesterday for almost all measures of time when speaking but fully understands the difference between last week ( a long time ago) last month ( a really long time ago) and tomorrow (in the future).
Another interesting thing I have discovered about Robbie is how he learns. Robbie loves movies. He has always obsessed over a few movies at a time- watching them many times over, as kids do. (I can remember my sister watching The Sound of Music and Eddie and The Cruisers- a zillion times as a kid.) The difference for Robbie is he has always mimicked the language or scripted the movie lines. This is very common for those on the spectrum as well. For Robbie however he has begun to take movie lines and use them in appropriate situations. Rob watched Paranorman with his Special Education class around Halloween. He asked if Robbie had seen it because so many of the phrases he has heard Robbie use. Robbie is such a visual learner- it only makes sense that he learns the appropriate use of language by watching it. He seems to try out phrases while we're in the car driving Lexi to school. He says them a few times- to perfect them. Later on he'll use them in the appropriate situation. I find this so interesting- and of course it makes me feel a little better about the amount of movies he does watch.
He almost never eats vegetables, however as begun to eat broccoli. The reason- it is eaten in two of his favorite movies, (Mars Needs Moms and Ice Age Dawn of the Dinosaurs). He started reciting the movie lines while eating the broccoli- now he just eats the broccoli.
Our newest challenge- finding movies where a larger variety of vegetables are eaten!!!!Who knew?
Another interesting thing I have discovered about Robbie is how he learns. Robbie loves movies. He has always obsessed over a few movies at a time- watching them many times over, as kids do. (I can remember my sister watching The Sound of Music and Eddie and The Cruisers- a zillion times as a kid.) The difference for Robbie is he has always mimicked the language or scripted the movie lines. This is very common for those on the spectrum as well. For Robbie however he has begun to take movie lines and use them in appropriate situations. Rob watched Paranorman with his Special Education class around Halloween. He asked if Robbie had seen it because so many of the phrases he has heard Robbie use. Robbie is such a visual learner- it only makes sense that he learns the appropriate use of language by watching it. He seems to try out phrases while we're in the car driving Lexi to school. He says them a few times- to perfect them. Later on he'll use them in the appropriate situation. I find this so interesting- and of course it makes me feel a little better about the amount of movies he does watch.
He almost never eats vegetables, however as begun to eat broccoli. The reason- it is eaten in two of his favorite movies, (Mars Needs Moms and Ice Age Dawn of the Dinosaurs). He started reciting the movie lines while eating the broccoli- now he just eats the broccoli.
Our newest challenge- finding movies where a larger variety of vegetables are eaten!!!!Who knew?
Monday, November 4, 2013
Independence- the positives and negatives
The weekend before Halloween Robbie went for almost 48 hours without sleep- a new record. The main reason for the lack of sleep was his tooth pain and massive amounts of candy. As I mentioned before Robbie requires dental surgery to fix some problems with his teeth-namely a large cavity. He will not sit in the dentist office. After months of fighting with my insurance company regarding their coverage of the anesthesia and hospital portion- it was finally approved. There is a mandate in the state of NJ that allows for those with special needs to get these services covered. It's funny that they finally mentioned this after I threatened legal action.
Finally Robbie had his dental work done. My husband and mother in law went with him and he was extraordinary. He did everything that was asked of him and the anesthesiologist actually said "He's really high functioning." This made Dad very happy.
The moral of the story with Robbie is- you just never know. In situations where I am sure he'll be well behaved - he can be a nightmare and in situations where I'm positive he'll be a nightmare- an angel.
Yesterday morning our doorbell rang at 9am. Rob went to answer it and found our next door neighbor informing us he had retrieved our dog and put her in our fenced in backyard (which he does often) and by the way, Robbie was running down the street barefoot in pajamas. Rob and I looked at each other for a second. Rob had been helping Lexi get dressed so she could play outside and I was putting Timmy down for a nap. Rob ran out the door and the phone rang. Our friends two doors down letting me know Robbie was with them. He had knocked on the door and when they let him in he was very talkative and mildly agitated. This was the same place he ran off to the last time this happened over the summer. Rob brought him home and sent him to his room. Then he went to the next door neighbors to thank them. I spoke to Robbie who was crying. I said "you scared us. We didn't know where you were. We love you and you scared us." His response" I scared you? Sorry." A few more tears and many hugs.
This is a pretty normal situation- I think. He's 7 and a half. He wanted to go to our friends house- a place we frequent and he enjoys. We were busy- so he went. Impulse control is of course an issue and the lack of communicating to us where he was going- but as far as the situation itself- I get it. I think he gets it too- that we were scared. Still, we will once again be double and triple locking the doors.
Our neighbor asked what we're going to do. Especially as he gets older. My thought was - why didn't you stop the child and leave the dog? The answer - I think- is one of the main reasons I write this blog. He probably was uncomfortable with Robbie- my Autistic son. I can't be upset by this- it happens. We all have seen special needs adults or children and may have felt a little uneasy. Not really understanding what their needs, issues, challenges are. Today every single one of us- will be touched by Autism, if you are not already. A sister, cousin, daughter, friend or coworker will have a child on the spectrum.
So- what are going to do as Robbie gets older? He is asserting independence. I don't think that is such an awful thing. He has left the house without telling us twice in the last 6 months. Both times going to a familiar place. A place that is safe. Honestly- it could be so much worse. Maybe we will let him walk down on his own- watching of course.
Finally Robbie had his dental work done. My husband and mother in law went with him and he was extraordinary. He did everything that was asked of him and the anesthesiologist actually said "He's really high functioning." This made Dad very happy.
The moral of the story with Robbie is- you just never know. In situations where I am sure he'll be well behaved - he can be a nightmare and in situations where I'm positive he'll be a nightmare- an angel.
Yesterday morning our doorbell rang at 9am. Rob went to answer it and found our next door neighbor informing us he had retrieved our dog and put her in our fenced in backyard (which he does often) and by the way, Robbie was running down the street barefoot in pajamas. Rob and I looked at each other for a second. Rob had been helping Lexi get dressed so she could play outside and I was putting Timmy down for a nap. Rob ran out the door and the phone rang. Our friends two doors down letting me know Robbie was with them. He had knocked on the door and when they let him in he was very talkative and mildly agitated. This was the same place he ran off to the last time this happened over the summer. Rob brought him home and sent him to his room. Then he went to the next door neighbors to thank them. I spoke to Robbie who was crying. I said "you scared us. We didn't know where you were. We love you and you scared us." His response" I scared you? Sorry." A few more tears and many hugs.
This is a pretty normal situation- I think. He's 7 and a half. He wanted to go to our friends house- a place we frequent and he enjoys. We were busy- so he went. Impulse control is of course an issue and the lack of communicating to us where he was going- but as far as the situation itself- I get it. I think he gets it too- that we were scared. Still, we will once again be double and triple locking the doors.
Our neighbor asked what we're going to do. Especially as he gets older. My thought was - why didn't you stop the child and leave the dog? The answer - I think- is one of the main reasons I write this blog. He probably was uncomfortable with Robbie- my Autistic son. I can't be upset by this- it happens. We all have seen special needs adults or children and may have felt a little uneasy. Not really understanding what their needs, issues, challenges are. Today every single one of us- will be touched by Autism, if you are not already. A sister, cousin, daughter, friend or coworker will have a child on the spectrum.
So- what are going to do as Robbie gets older? He is asserting independence. I don't think that is such an awful thing. He has left the house without telling us twice in the last 6 months. Both times going to a familiar place. A place that is safe. Honestly- it could be so much worse. Maybe we will let him walk down on his own- watching of course.
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