“Asperger’s syndrome has probably been an important and valuable characteristic of our species throughout evolution.”

- Tony Attwood

There is federal money in public schools to help your child, whether he/she is enrolled or not. It’s called Child Find or Proportionate Share. The schools have to spend this money each year to get more the following year. Not sure who makes sure that happens or if it actually does happen. The schools get to decide how the money is spent, so they might put it all toward speech therapy, whether your child needs that or not. And the schools are obligated to seek out privately and home schooled children with disabilities. In DISD this apparently means putting a poster on Child Find on a bulletin board inside the elementary school lobby – because that’s where privately and home schooled children’s parents hang out. Call your local school to ask about this money and how to access these services for your child. Rules or not, they won’t be calling you. In Dallas ISD the number is 972-502-6031.

MHMR* stands for Mental Health and Mental Retardation. I am not sure if this is the same name in all states. In Texas, MHMR is supposed to provide services for all people with disabilities. Asperger’s is excluded for some reason, so careful with the lingo there. Each county has a MHMR provider called an MRA. You will need to figure out who the provider is for your particular county and call them to schedule an appointment. In many counties, the population has risen and the figures haven’t been updated or something – I don’t exactly understand the reason. In Dallas County, there is money in the general revenue fund for services. The Dallas provider is called Metrocare, and their number is 214-333-7000. In other counties, particularly counties that have seen a lot of growth over the past 20 years, there are long waiting lists. You still need to call your county’s provider, because HCS is also handled through the county. We are on the HCS list, but I’m not sure my son will qualify. If I understand it correctly, HCS will make you your child’s legal foster parent when he/she turns 18 if he/she isn’t prepared for independent life.

* MHMR has been the only program that has helped us so far. It’s tricky and top-heavy and frustrating, but we have been able to get weekly visits to a very helpful neuroscientist for our son, and we have money for respite, as well. Respite is my only opportunity to get a break, because my son does his schoolwork at home with me as the learning coach, and my husband works 2 jobs. It is not easy to find and keep a respite provider, because they are not paid well, and gas is very expensive right now. If respite workers were paid mileage, it would make my life a little better. Right now I have money for respite, but I do not have a person who can stay with my son and take that respite money.

CLASS is a Medicaid waiver. In Texas there are huge waiting lists, and I mean 7-9 years. In Texas calls 1-877-438-5658 to sign up for CLASS, and make sure the person you talk to also puts you on the MDCP, or Medically Dependent Children’s Program, waiting list. Your child may not qualify for all of these programs when his/her number comes up, but get on them anyway just in case.

If you think you may qualify now for Medicaid, go for it. The number is 877-236-6500. You will need a certified copy of the birth certificate, name/phone number/address of diagnosing doctor, list of prescriptions and 2 most recent paycheck stubs for this application.

Some people are able to get Social Security money to help with their children’s care. That number is 800-772-1213. If you’re denied the first time, re-apply. For this interview you will need gross pay information, # of children in house, mailing address, parents’ ss#s, other kids’ ss#s, length of time in the home, bank accounts, life insurance policies, any stock information. If your child qualifies, you will need birth certificate and cash surrender values of all life insurance policies for every family member.

Texas has something special called the Autism Supplement. The autism supplement provides in-home training and family training. Contact your local public school district to ask about these trainings. See if they’ll pay to send you to the legal trainings the schools attend. If they agree to do so, please come back here and let me know!

Easter Seals helped us a lot with speech and OT before our son was diagnosed. Their Dallas number is 1-800-580-4718.

If you need to sue your school district and cannot afford to fund their attorneys through your tax dollars and pay for one of your own, Advocacy Inc takes some of your federal tax dollars and is there to help. Ha ha ha. Good luck with them, but here’s the number anyway: 1-800-880-2884.

As far as things you can do on your own to possibly help your child, here are some things you may want to look into: ABA therapy, DAN doctors, low-yeast diets/yeast overgrowth, gluten-free/casein-free diet (GFCF), low-oxalate diet. There are many more, but this is a good start.

We saw huge improvements from the low-oxalate diet, by the way. If you are interested in learning more about this one, there is a Yahoo Group run by Susan Owen called Trying_Low_Oxalates. It’s heavy on the science, but read the files, get the food lists and give it a try. You’ll see results immediately if you’re onto something. We noticed huge differences after only 4 days of removing 3 or 4 foods.

Here’s one more I found, but I’m not sure what it is. It might be worth calling just to find out if it can help your family. It’s called Community Based Alternatives Program: 512/438-3693

I’m no expert on this, but I know it took another parent’s help for me to learn about these lists. This information should be given out by all schools, doctors and politicians, because those are the places we go. If I have missed some, please post the information in comments.

To recap: We used Google to figure out what was wrong with our kid after spending a small fortune trying to figure it out with regular doctors. It was verified by a developmental psychologist at Children’s Hospital and re-verified by MHMR. We use Yahoo Groups to learn about therapies that work. And I talk to other autism parents through Yahoo Groups to learn about lists our child should be on and possible sources for help. Bass ackwards, isn’t it?