Back in the early 90’s when Cody was diagnosed with autism there weren’t nearly as many known treatments and therapies as there are now. I’m kind of glad about that in a way because it can truly be overwhelming to weed through all of them and try to decide which may or may not work for your child and for your family, and for your wallet. There are many autism treatments that are super expensive so I often get a little upset when I hear about certain celebrities and all of the wonderful options they’ve been able to afford for their child with autism and will often share and endorse when some of us have to get way more creative about what may or may not work within our modest incomes. Nowadays there’s still such a huge gap between what insurance will cover and what parents might need a second mortgage in order to afford their child the best opportunity possible. I’m not kidding when I tell you I’ve heard stories of parents going broke to provide their child with the best early intervention at a young age.
When Cody was diagnosed he received speech therapy and occupational therapy, two very standard and necessary therapies when treating children with autism. Beyond that, I was at a loss and didn’t really know what I could ask for through out local child development services because in all honesty we couldn’t afford anything if our insurance wouldn’t cover the expense. I had to consider our finances before ever reading too much about a certain treatment. We did try the GFCF diet (gluten-free, casein-free) with a little success. I will tell you that a restricted diet of any kind is not only expensive, but also very, very challenging, especially if you don’t have full support from those around you like friends and family. There are parents who will tell you this diet lifted the fog that their child appeared to be lost in or those that will tell you their child started to speak their first words with implementation of this diet. This was not the case with us. We saw some results in the area of Cody’s stereotypical behaviors, but even those were minimal.
Through a local parent group I finally found some great support. It was a place to talk with other parents of kids with autism and share our hopes and fears and what was working and not working for our kids and our families. This is where I began to hear about applied behavior analysis, or ABA as it’s often called. I read a lot about it and the success that many families had experienced from this therapy method for the child with autism. The only problem was that I had no way idea at the time how I could begin the therapy for Cody. It was an intensive in-home therapy for anywhere from 4, 6, or even 8 hours a day. One of the Moms in our group was working with a consultant from Rutgers University and told me she would see if she could get her to meet with our family and see what she might be willing to offer for services for Cody on her next visit to Maine. I visited her home and watched her son during one of his sessions and I knew immediately that this was something that could work for Cody. I crossed my fingers and hoped she’d be willing to take us on as a client. She met with us and assessed Cody a bit and she agreed to work with us.
This would become the single most effective and life-changing therapy for Cody.
I’m right on board with you. We tried GFCF for 5 years.. there was no fog lifted for us. If anything, it caused more problems because he was now being denied the foods that he had become accustomed to eating. ABA is, in my opinion, what helped us with our son. He’s still quite behavioral but for him to learn the academics necessary, it was what helped us. For the past year we’ve been phasing out the ABA and doing more cognitive behavior therapy with him. CBT is a wonderful transition from ABA/AVB.
Thank you for the comment Rhonda. I think every child is so unique which makes it so challenging to know what to try and not to try, especially with the expense involved. I hope that your son does well with whatever treatment/therapies you try.
I can only imagine what you are going through. I have different health problems (although on an orthomolecular level possibly related: Chronic Fatigue Syndrome) and am not seeing much in the way of results with the diet and vitamins based on my genetic mutations…but I’ve only been on it a month. We’ll see.
I just wanted to say that I SOOO get it when you talk about the frustration of seeing people with lots of money being able to afford treatments for their children while those of us in the middle class make do. It is hugely frustrating to me to watch the politics of our tax system and health care reform take money from the poor and give it to the rich. That’s just bass ackwards.
I wish you the BEST of luck!!
Thanks for the comment Kathy. This is definitely such a huge issue for anyone battling with any kind of health struggle. It upsets me so much to see that certain treatments are only available to those who are richer than the rest of us. I hate the thought of so many many deprived of wonderful care or opportunitites based on income. Good health to you!