It’s been a stressful month for me. First, finding out that my kids likely have Asperger’s Syndrome (AS) sent me off on a journey that seemed to have no clear destination and no directions. I felt lost and alone. It wasn’t the AS that was the problem – that brought understanding and relief. It was figuring out what to do with this information and how to proceed that really got me distressed. I knew I needed to figure out which path was right for us. Until I did, I was anxious, frustrated, and confused.
To add to my stress I learned about the gluten-free casein-free diet and how it could possibly really help my kids (and our family). At first I buried my head in the sand; I didn’t want to even consider it. My kids are already so limited in what they eat, refuse to try anything new (except candy, of course), and mealtimes are already difficult enough without me having to throw in a whole new way of cooking and eating and shopping, and then trying to explain to my kids why I wasn’t buying their usual staple foods anymore. I worried about constant conflict; I worried that my kids would be angry and vent their feelings at me at the expense of the trusting relationship we have built up over the years.
I’m happy to report that things are starting to flow, my anxiety is diminishing daily, and I’m feeling very positive about these issues now. The GFCF diet has turned out to be easier than I thought. And each day I’m finding more and more great websites and recipes devoted to GFCF cooking and baking. A few nights ago I made homemade sausage patties into which I added small amounts of pureed vegetables, including green beans. Son ate all the sausage patties, which just may count as the first green vegetable he’s eaten since he was 2. I am so excited that I have finally found a way to get greens into him (I will slowly increase the amount of puree over time).
But the biggest relief was finding a direction to follow with respect to the AS issue. I spent some time on a couple online forums where people don’t “do” diagnoses and don’t believe in labels. They treat each child as an individual and deal with their unique issues as specific considerations rather than symptoms of an overall “syndrome”. I really respect this approach, and I can understand why someone would want to go this route. It was definitely a possibility for us, but I still felt drawn to getting a diagnosis because I felt it would open up doors for us that would otherwise be closed. However, I also wanted to make sure that a diagnosis would not stand out as a defining characteristic of my kids and our family. I felt that somewhere I needed to find the “happy medium” where I didn’t feel alone, but where my kids weren’t going to be asked to fit into someone else’s idea of who they should be.
Last week I had a long chat with a representative from our homeschooling program‘s Special Ed department. They are supportive of getting a diagnosis because it makes resources and funding available to us (and in this program, unlike most schools here, we will get to decide how we want to spend that funding rather than being limited to certain treatment options). But the woman I spoke to emphasized that each child is treated as an individual and that they don’t focus on labels. Without going into long details about our conversation let me just say that I was so relieved, excited, and happy at the end of it. Their approach is exactly the happy medium I was looking for. I really felt like somebody stepped out and pointed me in the right direction. I feel confident now about the path we are taking, I feel like this isn’t going to define us or create any changes in my kids’ opportunities or their autonomy as learners. I feel like I have support and community. It’s such a relief to feel like I know where I’m going now!