The Truth about Resources and Autism

In an ideal world, there would be more than enough money for families with autistic children to get ALL the therapy and services they feel is necessary. Unfortunately, we don’t live in an ideal world, the furthest thing from it. So, what does it feel like to be a parent who has two children with autism and live in a state that has a system that eliminates you from being able to help your children? It’s frustrating, heartbreaking, and worst of all you feel completely helpless. As a parent, I want nothing more than to provide my children with the help that they need, so they can reach their full potential. I moved, without really thinking about the difference in the ways one state manages resources for disabled children as opposed to another state. I’ve said it before and I’ll say it again, in Autismland, NOT ALL STATES ARE CREATED EQUALLY! Perhaps it’s my fault, and I should have done more research, but now that I’m here in this position; what am I to do?

The truth about getting help for a child with autism is that therapies are expensive. Even if you have insurance that is required to pay for services, you’re still required to pay specialists co-pays for therapists. Let’s say that the specialist co-pay is $30.00 and your child needs speech therapy, occupational therapy, developmental therapy and ABA therapy. Which is not covered by most insurance companies, or coverage is minimal with caps of $10,000 for life, which may seem like a lot of money, but not when it comes to ABA therapy. That’s about three to six months of therapy. The money runs out fast, but say you are desperate to help your child, so you at least get them into speech and occupational therapy, that’s $60.00 per week in co-pays and averages $260.00 per month (double that if you have two children on the spectrum). That’s about as little therapy as you can get away with. It’s sad and pathetic that it only addresses two issues that confront autistic children. It’s just not enough, but it still costs too much. Can you see how a parent could be frustrated? The truth is that if you are the parent of a child with autism, you are going to make a lifetime full of sacrifices for your child. Not just monetary sacrifices, but emotional sacrifices, physical sacrifices and you don’t even think about it. You just do it…if you can.

If you have a child with autism, you would be wise to research which states provide the best resources for disabled children. You would also be wise in your research to find out if the state bases eligibility for resources on household income scales. In most cases, only the poorest children in those states will be getting benefits. There are five + year waiting lists for some services, so it’s a complete waste of time even applying. The TRUTH is, that the middle class parents who make a decent living (but it’s not as if every dime they make is free to go toward therapy) are left to fend for themselves and are left to the mercy of the school system which is severely lacking in most cases. The truth is, that you can’t just live anywhere you want to. You have to go where the resources are, where you will get the support you need. A life with two autistic children is challenging. So what do you do?  

I have a child in the school system that is getting only a certain number of allotted minutes of speech therapy per week. The equivalent of a half an hour. That’s next to NOTHING! They eliminated his occupational therapy because he’s now capable of holding a pencil on his own. They don’t consider that he needs the occupational therapy for sensory problems. Yet they still insist that he needs to be put into a self-contained classroom. My other child is two and a half. He was diagnosed just after his second birthday, He doesn’t speak, he may have apraxia, and we can’t find a speech therapist within 50 miles on our insurance that works with autism and apraxia. That’s just speech therapy. He needs so much more than that, we simply can’t give it to him and it breaks my heart every day. You may hear me say that a lot in my blog posts, because there is always something that stabs you right in the heart every single day. Some days are better than others, but the reality is, that you will experience regular heartbreak as the parent of an autistic child (that’s where the emotional sacrifice comes in). Perhaps in my case I get a double dose of it, but that doesn’t stop me. I just keep going, the pain becomes a normal part of life but it certainly doesn’t mean my life is normal.

For the past six months, the frustration of not being able to help our children has been weighing very heavily on us. We’ve discussed the pros and cons of moving to another state where the resources are better. We’ve even had several conversations with our developmental pediatrician about it. First, we consider the economy and what jobs might be available to at least put a roof over our heads, and food on our table. Moving could mean major pay cuts, and more sacrifices (physical ones), but if the state provides substantial amounts of therapy, isn’t that worth it?

The truth about resources and autism is that it’s all about making sacrifices so your children can reach their full potential and it’s easier in some states than others so, make your life choices very carefully.