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lady_katie
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22 Mar 2017, 4:40 pm

Hello, I have a 5 year old with autism. He was diagnosed at age 2 as being level 2, but was moved up to a level 1 at age 4. To be honest, I'm not sure that I would agree that he is a level one. He requires quite a lot of support. He did not do well in a class of 9 students with a special ed teacher and 4 aides (2 or 3 of the students were typically developing, the rest had a variety of disabilities.) This was last year, and this year I have been homeschooling him. Homeschooling has been an improvement, but I am super burnt out trying to understand and guide him all alone. He has quite a lot of behaviors that are just exhausting for me to keep up with. For example - he's not fully potty trained yet, he has very loud outbursts on a regular basis (I'm also autistic so this just grates on my nerves so badly), he's constantly breaking things, making messes that he will not clean up no matter what I do, tormenting his littler brother, etc. etc. I need some kind of help, but I do not know where to turn. He is being re-evaluated by our local school district next week, but the only school services they are offering are to place him into an inclusion class of 23 students with very little support. I can bring him up to the school for therapy while homeschooling if I choose to (OT/PT/Speech), and I may do that, but when he was in therapy last year he was refusing to participate, so I'm kind of doubting that this is going to benefit him if we try it again. It may make his behaviors worse if he ends up hating it. I've been trying to get a respite provider in here but finding one that is both understanding and reliable/available has been impossible so far. I just honestly don't know what to do. I am considering moving to Ohio because they have an autism scholarship program and I would have some options as far as in home ABA programs, center based programming, charter schools, and possibly other things, I'm not really sure yet. It would be extremely difficult to make this move though, and I don't even know if it would do anything to improve our situation. It sounds like I would at least have some sort of support in creating a custom program for him, whether that be in a center or based out of our home, or some kind of combination of the two.

Also, the other problem that I am running into with homeschooling is that even though we have a lot of activities for homeschoolers in our area, it has been difficult to find things that he is able to participate in, and even when we do figure out something that sort of works for him, he's still hardly interacting with anyone. I don't feel the need to have him interacting with kids constantly, but it has literally only been a few minutes a week, and I just feel like this cannot possibly be healthy. Even when I manage to line up aide support, they are struggling to make it work in such a way that he really benefits from the activities. When I find something that is of interest to him, he either ends up having inappropriately impulsive behaviors the whole time (because he's excited?) or just becoming so engrossed in it that he's not interacting with anyone anyway. Like in swimming class - this is his favorite activity, but he spends the entire time sticking his head under the water. He doesn't care that there's anyone else in the pool with him, he's not paying attention to the lesson, and his aide is spending the entire time struggling to get him to stop sticking his head under the water while he's trying to talk to him. Then afterwards he refuses to leave the pool, so we have to deal with that.

I just don't know what to do. What would you do? Should we try moving to Ohio and experimenting with some of their services? I need to make some changes before I completely burn out. For what it's worth, I really enjoy homeschooling him, and I would love to continue to do so if I can get some sort of help with it. It has been of great benefit to him to have 1:1 instruction and to have a lot of flexibility with his curriculum. Academics are his strength, and I would hate to see that go down the tubes if he ends up being placed in a educational environment in the future where he cannot think straight.

Thank you for your thoughts!



BiPAutMom84
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22 Mar 2017, 5:10 pm

I am a mother of a 14 year old boy with autism. I can only tell you from my experience the things I have done for my son and the things that helped me tremendously. First thing, get a referral from your pediatrician to see a Gastroenterologist. 4 out of 5 kids with ASD have GI issues, the worse they are, the worse their behavior is. In the case with my son he was addicted to only a few foods. And that was all he would eat. When all the testings came back it showed that he was allergic to milk... which is strange because he had been ingesting milk his whole life and never had any adverse reactions.... so I thought.... until mostly ALL of his "annoying" behaviors vanished. Things he did made more sense. He was able to conversate better and pay attention and learn in school. He used to bite on his shirt all the time and make these loud tic noises that drove me nuts. That vanished after a few weeks of removing milk. Also, every child on the spectrum is eligible for ABA therapy, even if they have Medicaid. Also they are eligible for many other services in every state. Below is a link that will help you and let you know about the services in each state. You don't have to have Medicaid to be entitled to these services. I really hope this helps you!! !
https://www.medicaid.gov/medicaid/ltss/ ... report.pdf



lady_katie
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22 Mar 2017, 6:23 pm

BiPAutMom84 wrote:
I am a mother of a 14 year old boy with autism. I can only tell you from my experience the things I have done for my son and the things that helped me tremendously. First thing, get a referral from your pediatrician to see a Gastroenterologist. 4 out of 5 kids with ASD have GI issues, the worse they are, the worse their behavior is. In the case with my son he was addicted to only a few foods. And that was all he would eat. When all the testings came back it showed that he was allergic to milk... which is strange because he had been ingesting milk his whole life and never had any adverse reactions.... so I thought.... until mostly ALL of his "annoying" behaviors vanished. Things he did made more sense. He was able to conversate better and pay attention and learn in school. He used to bite on his shirt all the time and make these loud tic noises that drove me nuts. That vanished after a few weeks of removing milk. Also, every child on the spectrum is eligible for ABA therapy, even if they have Medicaid. Also they are eligible for many other services in every state. Below is a link that will help you and let you know about the services in each state. You don't have to have Medicaid to be entitled to these services. I really hope this helps you!! !
https://www.medicaid.gov/medicaid/ltss/ ... report.pdf


Thank you! I suppose we could try a gastroenterologist, but to be honest it sounds like a lot of added stress with little promise of improvement. My son didn't have dairy for the first 3 years of his life and once we introduced it, it didn't make any difference at all. We have also tried a gluten free diet with no observable differences.

ABA therapy is not available in our region and I have never heard of a child receiving it here. Our services are limited to whatever the school district is willing to provide, and a very limited amount of community activities (camp/social skills class, etc.) Our insurance only covers 80% of one hour of one kind of therapy (speech/OT/PT) per week, which I can just get up at the elementary school for free if I choose to try that avenue again. We would have to relocate in order to access any kind of specialized programming, which we are seriously considering doing if we decide there's a good enough chance of it improving our lives.

Thanks again!



ScottieKarate
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23 Mar 2017, 1:21 am

Have you joined myautismteam yet? It's a great forum for parents of children on the spectrum to support each other and share ideas. Many homeschool there too. Sorry mods if sharing this is frowned upon.
ABA is mandated in 38 of the states. Private insurers do not have to offer coverage. Medicaid does in those states. What state are you in? What insurance do you have?
Autism Speaks is frowned upon for many things, but they have a handy list of advocates. Get one. By law, your son is entitled to a free proper education in the least restrictive environment. This means, if the school district cannot properly support him, they need to pay for other methods. An advocate will help you with this. They can also help you fight for more services through the district. The district will always default to spending as little money on your son as possible. It is up to you to challenge their methods.
Kudos for trying the homeschooling. I can't figure out how to teach my son anything.
Personally, and I know each situation is different, and it might not be possible, but for me, if I couldn't get daily ABA, I would move.