Autism Support Group

Okay, I am bipolar, my oldest child has high-functioning autism, bipolar, ADD and ODD, my younger daughter is bipolar. I don't see Erik's Ranch type places targeting Bipolar kids. I don't see "CURE BIPOLAR DISORDER NOW! groups running around trying to fleece the masses. Bipolar is common. Lots of kids have it? Why is it so insanely expensive to be autistic??? I am living right above the poverty line. The kids and I have received help from social services, mental health, the public school system, and recently the juvenile justice system. My autistic kid is higher functioning. She has made good improvements and continues to grow and develop without all the high-end out of reach therapies and gimmicky cures. I thought she would have a horrible life and prognosis because I wasn't rich enough to buy the things these helpful groups were pushing. She is doing good without all that. Still, I can't help but feel like I am suppose to be a lotto winner or a CEO to be blessed with an autistic child in the first place. Anyone else feel that an expectation of a high income is expected by certain groups or people?

No.

i know how u feel Rita. im assumming since Autism has been in highlighted more recently than previous years back and its DX of more and more children gaining more attn, SOMEONE's out to make money. I don't mean to be negative, and i am a teacher, but i feel as if society pushes and pushes for some rushed cure or early intervention therapies that make a killing off parents. i also believe with the right support and care and love from parents, children with autism will develop to their best potential...whatever that may be....and that a multitude of ABA, therapies, classes extra schooling will NOT cause some "breakthrough" growth. When alex was first dx, i fell for it all...was worried shitless, didnt know what to think or do....especially me having BPD as well. But as time went on, i know my son and he is beautiful...He has many gifts and wonderful qualities to offer if only the ignorant society would make the effort to see that. Alex was attending seperate one on one therapy sessions at a local autism center for about a year. i stopped sending him when i came to my senses and realized that this same center (as i mentioned in another post) was going to start charging cash for their great summer camp. The camp was to be from 9am -1pm and i somehow thought it would help alex adjust to seperation from home for hourse at a time to prepare for school this fall in a special ed unit. when i found out young undergrad personnel were going to run the camp, with no certification, i was appalled at the nerve of them to charge $1500 for the camp. insane. screw that crap.

I took the summer off to spend more quality time with my son and we have grown so closer.

The public school system here has many autistic kids from surrounding counties bused to a psycho ed center for special classes. For awhile they also did a summer camp class that lasted for a month and they just did fun things and took them all out to McDonalds and let them play and things like that. It was supposed to help ease them threw the summer and their changing routine. Right now there have been budget cuts in the school system and programs like that are suffering and getting put on hold. Gabby was higher functioning and had serious behavior issues. The regular people that worked with autistic kids daily were not use to Gabby because she was placed in behavior classes during the year. Gabby talks, but she tells it all and to total strangers. Secrets and strangers??? What are those??? Autistic kids can be so unique, each one is a learning experience. Gabby bemoans the fact there are so few autistic girls and so few girls are in behavior classes. She has one bipolar girl in her class, all the other kids are boys. A good friend and relative had a doctorate in special ed. She was a tremendous help to me. She told me that me staying home with Gabby and putting time in to do all the things I did was as good or better than sending off to those classes. I got to thinking about all the things I tried and how many hours we did abc's and phonics to help her oral motor, singing, engaging her and keeping her attention and drawing her out. I couldn't buy that kind of care for my child!

I agree with a lot of what is being said, but I also have a few disagreements. Yes, I believe that therapies are much too expensive and most parents can't even begin to afford them. Especially those whose health insurance won't cover any services for children with autism. I am one of those parents. We also live right above the poverty line. I have even considered quitting my job in order to get my income low enough to get state benefits for my son. But then we would be in complete poverty, so what good would that be for the rest of our family?

That said, just because I personally can't afford the services does not mean I am against them. In my opinion early intervention IS THE KEY to helping autistic children learn to be independent. From what I understand, studies have proven this time and time again. (I don't have a bunch of study references to give you about this, it's just what I personally believe and have seen with my son.) Our public schools are good but the teachers don't have the proper training for children with autism.

I am extremely blessed in that my parents had resources that they were able to help put my son in a one on one ABA therapy center for children with autism. The cost was 4000.00 (which I agree is ridiculous) and there is no way I could swing that. Brian is almost five and up to this summer has been basically non-verbal. If my parents had not sent him, I would not know what this therapy could do for my son. It has done tremendous things for my child. We have been trying to potty train him for over 2 years and after only 3 weeks they were able to do so and he began to tell us the need to go. He is now verbalizing about fifteen words and his social skills are improving greatly... all within two months of starting ABA. I will find a way to keep him going to this center after school in the Fall.

On the flip side, I believe that dedicated parents who can not afford or choose not to use outside therapy can learn the correct skills to use with their children and accomplish tremendous things at home. This needs to be the case of not only stay at home parents, but I think all parents need to apply their time to their children, even those whose children are at schools or centers during the day receiving therapies. Parents are a huge key to their childrens success, but only if they are completely committed. The center my son attends has weekend seminars to teach the parents the procedures they use and we attend them faithfully. That way if we can not afford the therapy he can still receive it at home. Not to mention that we are the ones who live with him and work with him daily, including weekends when he is not at the center. I would do anything necessary to help my son, as would most parents.

I can see where everyone who has commented is coming from on this issue. But overall, I think my main problem is not with the centers that are offering the therapy, although I think they could lower their costs. My main problem is with the insurance companies who refuse to pay for whatever therapies these children need. Good luck to all of you who are doing this strictly at home. I admire you greatly.

In fact, I had tried to hide Gabby's condition from the rest of the family so they would treat her like a normal child. I had my cousin evaluate her before I let anyone else test her. She could see Gabby was very autistic from her tests. She hated to break it to me, the first thing she said was, "Well, she's very well socialized."

I personally have never hidden the fact that Brian has autism from anyone. He is exactly who he is and I am so proud of him for the things he can do despite his autism. I don't go around announcing it to everyone I meet, but if people give him a funny stare or he does something that is not typical of a child his age, I will smile and explain that he is autistic and has his own way of doing things. Most people do not treat him differently if they know. It just helps them to understand why he behaves differently from their own child. Rita, what a great blessing that Abby is very socialized. So is Brian, and I know what a wonderful thing that is. It just shows that you as a mom have spent a lot of time working with her and bringing her out into her enviroment. Awesome!

I agree 100% with what briansmom says in her earlier post: "On the flip side, I believe that dedicated parents who can not afford or choose not to use outside therapy can learn the correct skills to use with their children and accomplish tremendous things at home. This needs to be the case of not only stay at home parents, but I think all parents need to apply their time to their children, even those whose children are at schools or centers during the day receiving therapies."

I'm more of a believer that early intervention begins at home. I don't believe a child needs to be in every program in the world that is offered. We are not at the poverty line, but we are not rich by any means. We have private health insurance, which does not pay for autism therapies. My child receives speech, ot, and pt at his school. It's a regular school. My son was able to go to an Autism camp for 2 summers in a row (1 week in length) because his godmother covered the cost for him to go. He did come back with some new skills the first year, but that was because they had a phenominal staff that year. The second year, the staff was different and they didn't relate to the kids the same. Most summer camps are college-aged kids that are working for the summer. Yes, they really do have to put the effort in to work with special needs kids, but knowing exactly how to work with special needs kids is not something that there is extensive training in. We, as parents and caregivers, have much more expertise and know our child much better than they ever could.

I agree, the time parents put in makes the most difference that can be made. When Gabby was three, I suspected autism. I always thought I was undiagnosed Aspergers because I had read about in some my Grandfather's medical books before they were diagnosing it in this country. My family treated me like the village idiot because I was not gifted and they considered me "fragile" mentally. I was also untreated bipolar. My family was in denial and every one of my problems was me being manipulative or lazy or something else that was totally in my power to control. I heard voices and I told no one. Hearing tests were done because as a child refused to answer people unless I saw their lips moving for awhile while I learned to hide the problems they didn't want to know about. While I am sure there are all kinds of wonderful families, I knew the kind Gabby had been born into. I was not going to have her treated like I was treated. No way. I stand by my decision. My grandmother was floored when she was diagnosed. "But she hugs me! She smiles and has feelings, she can't be autistic!" I made a good choice, they knew and loved Gabby and never treated her like an idiot or talked down to her. She was surrounded by educated people using big words and building her vocabulary and teaching her things they wouldn't have otherwise. Also my husband was in the dark enough to let me have the second child I wanted. Would he have taken that risk if he knew there was a risk? I don't think I'd have my Cassy if he knew. He knows what I did now, and he's glad we have Cassy too. It was unethical to keep it to myself and just search the web for information on every kind of therapy and work with her all day while he was working long hours. But by the time she was diagnosed, she wasn't an ill child, she was GABBY to everybody! They knew her, loved her, respected her for who she was, and they didn't morn the child she wasn't.

On a side note, you can only hide bipolar and autism from people who do not wish to see it in the first place.