PDD-NOS, What comes next?

Getting Normy’s diagnosis of PDD-NOS was a bit like feeling “Yes! I knew it! I’m not crazy!” Quickly followed by utter dejection and denial. “He’s fine, he’s great! He’s just a late bloomer.” I think Smoochy might have handled it a little differently. He was very indifferent to the diagnosis, and just kept repeating. “I know my son. This doesn’t change anything.”  As true as that may have been on some level, for me it was a big game-changer. For one, it really ignited in me the desire to DO something. Now we know what the problem is, we have to DO something to fix it!

Of course, a quick Internet search of “autism” will reveal to you that there is no way to “fix it.” Autism is a condition for which there is no recognized cure and there is no known cause… or at least so says the powers that be. The best that the authorities have to offer is behavioral therapy.  OK, I thought let’s look there.

All throughout Normy’s evaluation process I kept repeating, “I don’t really care about the diagnosis, I just want someone to point me in the direction of some tips and tricks that can help me teach him.” I kept saying “I want some tools that I can use to help him reach his full potential.” I thought that if he just got a diagnosis doctors and therapists would spring to action and line-up to take him on as a patient. I thought doors would magically open and we would find tons of parent groups and online resources and suddenly we would KNOW WHAT TO DO.  Boy was I disappointed.

Along with his diagnosis I got a packet of basic info on the “disease”. There was a list of contacts that provide ABA (applied behavioral analysis) and other autism services. And we were given the very strong impression that we should stay away from “any therapy that is too out-there” (like crazy diets and the biomedical approach). But, the more I called around and clicked through the list of Internet links the less and less confident I became. I felt completely overwhelmed. The media was full of reports of the proven benefits of ABA therapy and miracle recoveries of children who were diagnosed at around two years-old then spent three years in intensive 40+ hour a week ABA programs.  Could we get Normy in a program like that? Was it too late for my five (almost six) year-old? I had an incredible feeling of frantic despair. The clock was ticking!!!

There were therapists at the facility where we had Normy tested that were willing to talk about options with us. We got an indication from them who was the most reputable ABA provider in town and we contacted her to come to our home to talk about what she had to offer. My hubby and I were hopeful and interested… but nervous that the couple thousand dollars we put it flex spending earmarked specifically for Normy wouldn’t cover ABA.  Turns out we had good reason to doubt.

Through out the therapist’s presentation we were thrilled at the quality of program she had to offer. She would coordinate all of his therapists and the course his therapy would progress along. She would arrange weekly or biweekly meetings with herself, the therapists, and us.  Therapy would be in our home for about three hours a day (like most of her clients receive). That’s 15 hours a week, well below the 40 hours clinically recognized to produce results. So why are all these parents only providing 15 hours to their kids?

Well, because that’s all they can afford. In the state where we live, insurance companies are not mandated to provide insurance coverage for autism. So they don’t. AT ALL.  We have one of the best insurance plans in the state and they have a complete exclusion for all autism services. They absolutely will not cover ABA therapy. And at the start of this year a bill to mandate autism coverage got struck down by the Health and Human Service Committee. It didn’t even get passed on to the floor for a general vote.

What was the sticker shock for the gold-plated in-home ABA therapy we were exploring? $30,000 a year. We cried about it, we fought about it. We debated and crunched numbers and we stressed and fretted about it. Then I got a job.

It didn’t make sense to us for me to go to work during the day when we’d have to spend money on childcare. We are a home schooling family, and that time for us is sacrosanct. So, I went back to my roots and got a job waiting tables at a little neighborhood restaurant right down the street from our house. Smoochy and I were both willing to give it a shot. We decided to wait two months from the start of my employment to see if we could make it work before beginning therapy. That would also give us time to explore other therapy options and decide if we were on the right track.

So, I strapped on my apron and got to work. Not just while I was at the restaurant, but while I was home too. I had to be more diligent about meal planning and house cleaning to get it all done BEFORE my five to ten o’clock shift began. I was burning the candle at both ends and Smoochy was picking up the slack. He was coming home from work just in time to kiss me good-bye as I dashed out the door and left him with the kids, and dinner, bath-time, bedtime, and the kitchen to clean. To say this was a stressful time for us was an understatement. It was great to feel like such a team with my husband, but during the day I was tied and crabby. I started yelling at the kids, and I never felt like I was “doing it” right. The kids stared watching more movies and playing more Ipad games. Whereas before I sometimes had time for one-on-one interaction with each of the kids, now I had none. It only took a month to realize this wasn’t going to work. Not only was I not making enough money to cover therapy, but also our family was coming a part at the seams.

It was about this time I was put in contact with an awesome woman whose son was given the diagnosis of autism at the age of two. At the time, she was told it was likely that he would never walk or talk. Today he is attending elementary school in a normal classroom without an aid. How did she accomplish such a feat? With hard work; employing the services of a neurologist; and by learning a variety of behavioral therapies herself she was able to help her son achieve goals that couldn’t have been imagined when he was a toddler.  Talking to her made me trust myself, and realize that all was not lost if in-home ABA therapy was out of our price range. There are other paths that lead to success for these kiddos.

So, after two months of employment, I hung up my waitressing apron, put on my big-girl panties and my work boots, and set off in a new direction…

To be continued…