New to Wrong Planet can anyone help

Post Reply New Topic

Hello

My son was diagnosed with Asperger's at the beginning of this school year, and was diagnosed with ADHD when he was 4years old. He just turned 9 years old. He has been taking ADHD medication since he was 4. He also has to take medication to help him sleep.He has social problems. He does not like loud noises and get distracted and frustrated really easily. He has problems with his writing. When he is writing he will get stuck on writing a letter and keep tracing it over and over, sometime he will eventually tear through the paper. He can't keeping his writing in between the lines on his paper. He will have his letters three lines high. He doesn't know the difference between a second a minute,or an hour. He doesn't know the difference between a day, a week, or a month. My son does not sleep well at night, every since he was a baby he didn't sleep much. He will go to bed sometimes a 11 or 12 and wake up at 3 or 4 and not go to sleep until the next night. That is with him on the medication. Without the medication he would go to bed between 1am an 3am.The school that he goes to will not put him on an IEP, they did put him on a 504 plan. The school has handled his writing by having someone else write for him if it is more than a one word answer.
I recently went to a Autism Expo and Conference an I learned a lot from it. I learned that there is help and hope out there.You just have to find the right doctors. I just don't know what direction that I need to go. My son's pediatrician will not listen to me when I talk to her. She acts as though these things that I am saying on here is not a problem and has no concern. She just hands over the meds and says take these. At the conference that I went to I learned about all the different types of therapy that I could put my son in. The only thing is, is you have to have doctors referrals to get in these therapies. I know I need to find him a new doctor but I don't know where to go. I was told about a doctor in Tipp City, Ohio but is not covered by insurance. And the doctor visits are $200 and some dollars a visit. The people at the conference call these doctors DAN doctors. I don't make a whole lot of money. I know that there are grants or scholarships out there for families with ASDs but the requirements say that the child has to be on an IEP for a year.
But as I said before the school won't put him on an IEP. Does anyone know of any other DAN doctors in Ohio? Or any other suggestion on what I should do?
Thanks for your time.

I'm actually a little wary of the DAN doctors, because while some have done a fantastic job, others have been known to quickly promote questionable protocols simply because they can ... and they make money from it. There is a whole industry that seems to exist on parental frustration and worry, guilting parents into trying everything, no matter the cost, least they not do "everything they can." THAT worries me.

Many of the successful things you can do can be done without professional assistance. Therapies like floor-time are based off of what some incredibly instinctive parents were doing with their kids, and that had great results.

One thing from the DAN protocol that does seem to have stuck and gained ground is the idea of dealing with diet. However, on this forum we've come to see that as a lot more nuanced and complicated than the GFCF you may have heard about, which can actually be counterproductive with the wrong child. We have a ton of threads on diet issues, so please read them. While medical testing may be needed, it is also possible that you'll find the culprit - IF there is one - by keeping a careful food log and going through elminations. That you can do at home without spending a small fortune.

Popular therapies at your son's age are occupational therapy and speech therapy. These you would get through the school if you could get your son an IEP. I didn't have to battle the school system to get my son those services, but other parents here have, and hopefully they can help you get a better handle on your rights and how to assert them. Otherwise, these are services you should be able to contract for privately without having to have a doctor's referral, it's just easier if you do.

Have you read tracker's book yet? asdstuff.com You'll find some answers in there, as well.

Overall, a lot of what we, here, on this forum have found that works with our kids is controlling their environment, and being more responsive to their unique needs. Read around; it WORKS. Some families have wonderful sensory rooms that are very self-calming for their AS kids. You don't need to pay a professional to get one; you just have to change your idea of what your home will look like.

While I'm not going to tell any parent who has the funds to not try everything they can to make life better for their child, I have to admit that I'm not seeing better results with the children who have undergone umpteen expensive experimental therapies, than we've seen here with ours, by taking a more environmentally oriented approach. I have friend who went thousands of dollars down the hole with things like bio-feedback only to get the best results simply from finally getting the right school placement. It isn't about what you try nearly as much as that you pay attention to the child, and invest time in figuring out his unique needs. The shame is that so many people exist to make money off of that. ALL the kids do well when mommy devotes huge chunks of herself to the unique needs of her child, and your budget, hopefully, won't hold you back there.

Don't be afraid to change schools, and don't get so caught up in the cold realities of life - to the extent you can avoid it - that you can't spend time one on one with your son trying to help him with his issues yourself. My son is finally in a space where I don't have to do that, but for years and years his needs drove my world. I was involved at the school because it helped me see what was going on. I had all his playdates at our home so I could watch and maybe negotiate. I sat with him one on one through every piece of homework. I did silly songs as a reward for his getting a math problem done. I picked him up at school so I could talk to the teacher, and know what situations I should break down with my son to help him understand them. And so on. It was part of the investment, not financial but personal, and it's been amazing to see it pay off.

So ... not an answer to your specific question about a doctor, but hopefully you'll this suitable for your question about "anything else."

First, I just want to say.. I've been going through a lot of the same issues you have. I totally know how frustrating it is.

Do you know other people in your town that have ASD kids? First and foremost, network.. Find a good pediatrician, find a good counselor. I found our counselor by chance. Talking with a friend of a friend who had a child with issues. He has made all the difference in the world. Also, find a non-profit advocacy organization. They will help you every step of the way..

Have you checked this out?

http://www.ocali.org/
Ohio Center for Autism and Low Incidence

Maybe they can help you find local help.

I have met a few people that have children with ASD. I am a custodian a elementary school. and the principle's son was diagnosed over this past summer. I haven't really talked to her that much about it feeling that I maybe crossing some surt of line since she is my boss. My sister and I are going to participate in the Autism Society Dayton Chapter Walk/Run for Autism, and I sent an email out to the whole school district because we are collecting donations for the walk/run and another co worker at one of the other elementary schools emailed me back and told me that she has a son that is 15 on the spectrum with behavior problems. Also the conference that I went to was at a Church and they recently started a support group I wouldn't mind going to but I can't because I work second shift. Hopefully I will be able to over the summer when I work day shift.

Yes I have been to Ohio Center for Autism and Low Incidence web site. I have been searching the internet and have been reading as many books as I can even though they seem to keep repeating the same information.
Thanks for your help and input

How does your insurance work? We found the best treatment center for our son thus far by checking our insurance's database online. I think I first researched "autism" and then might have searched "Developmental Behavioral Pediatrics" The advantage to doing things this way was that, not only were we assured we'd be covered - but also we got a clinical group who specialized in autism who took a more conservative approach; insurance companies typically endorse practitioners only if they have reason to believe they are successful.

I think conservative is a good place to start; prior to this, we'd done talk therapy (useless for early autism intervention) and RDI (cost too much and isn't really that different from more traditional approaches - we weren't able to afford to stick with it long enough to see if it works.)

DS has really been improving, we've had parenting classes, he's had social skills classes and has one-on-one therapy sessions - and these things seem to help. After the social skills class is over, we plan to try either occupational therapy or speech therapy.

I have had some friends who have had incredible results from DAN doctors....as controversial as they are in various circles. The fact is that they can be super expensive.

I'd suggest this program which helped my son a lot and can be done online: www.brainhighways.com. I also suggest melatonin for sleep issues and 5htp, along with valerian root for calming. I really like natural stuff, as you can tell.

With the writing issues, it sounds like your son may have dysgraphia. My son has a history of writing difficulties but his aren't just a fine motor issue....he has a very hard time organizing his thoughts and gets overwhelmed by the entire process, which actually is quite complex when you think about it.