I've been reading a lot recently, to try and put Bobby's special difficulties into perspective and to get some methods we can use at home. When he is sweet, he is sweeter than pie... When it is a bad day, well hang on. It's a rough ride. There's throwing of trains (my head has been a casualty of Gordon and Thomas at times), slapping, yelling, crying... It can be absolutely insane. To be clear, Bobby is a sweetheart and, 80% of the time, life is good. It's that 20% of the time that is hard to handle. It's that 20% of the time, combined with his preschool difficulties, that led us to agree to the IU's request for a psychological evaluation (more on that later).
Because of my background, I turn to books and published research when I'm in need of advice or information. I've focused my reading to autism and PDD-NOS related titles, because even without a diagnosis, these are the things that seem to fit him when it comes both to behaviorial attitudes when upset as well as techniques that help. Among the books I've finished and recommend are:
- Children with High Functioning Autism: a parent's guide by Claire Hughes-Lynch. This book was a good primer on the types of services available, how to advocate for your special child, and the different types of therapies that this family found helpful. Claire is a college professor who teaches about special needs and gifted needs, so it is written in a clear, easy to understand format with good references.
- Louder Than Words: a mother's journey in healing autism by Jenny McCarthy. In a very laid back, expressive way, Jenny shares the story of her own journey from her son's diagnosis to what she feels is his recovery. I read this when I was struggling to make sense of having a special needs child and, although our sons are very different, I found a lot of hope in her writing. There is a fair amount of potty mouthing, but the book is honest and emotional.
- Not My Boy!: a father, a son, and one family's journey with autism by Rodney Peet. As in the above title, this is a book from a parent's point of view, in this case NFL football quarterback Rodney Peet. In this extremely moving and honest story, he talks about the difference in how moms and dads attack problems with their children, giving some light to how the fathers are feeling in situations like this, as well as offering advice on how to cope. This is not a treatise on curing autism or how you should do this or that, rather it is a straightforward walk through the Peet family's journey from diagnosis in infancy through teenagehood.
- Look at My Eyes: Autism Spectrum Disorders: Autism and PDD-NOS by Melanie Fowler. This was the first book I read because it was short and seemed like it would get to the point. Boy did it. It wasn't until I read this book that I saw the PDD-NOS behaviors that Bobby was showing for what they were. One or two could just have been issues, but several together brought me closer to helping Bobby. Although it is short, the book is a good place to jump in and get your feet wet when you are first discovering what is going on with your child and how you can help them.
- Unraveling the Mystery of Autism and Pervasive Developmental Disorder: a mother's story of research and recovery by Karyn Seroussi. By far, this is the book that is helping me the most at present. Written in a clear and easy way to understand, Karyn backs up what she is saying with personal experience, the experiences of those families she is close to, and with scientific evidence. While the medicine and science isn't 'main stream', it appears solid. Although I dont believe that diet alone can 'cure' anything, I think that dietary changes in combination with other things can. Also, her point is that some children (a third or so) may be having hallucinogenic responses to food (versus allergic ones) and that removing the offending foods can help a child make huge leaps with their therapies is one that, when you find your child being represented in case studies, makes you take a step back.
The last book had so many case studies, which was helpful in trying to determine whether or not something could possibly help our family. One little boy, in particular, resonated with me and my hands were shaking as I handed Peter the book, asking him to read it over. The little boy LOVED bananas... He only wanted to eat bananas. He didnt appear to have an allergies but man, when he ate bananas he was on cloud 9- literally.
That's so much like Bobby it was scary. The first food he requested was bananas and he could easily eat an entire bunch in a day if you would let him. I use bananas in so many alternative baking recipes because I always have them on hand and because I know he'd try the food, knowing there were bananas in it. Crazy, right?
On October 14th, we nixed the bananas. After reading it, I just couldn't give them to him, the entire what if running through my head. After reading through some of the research with Peter, we decided to not just cut the bananas, but dairy and wheat/gluten too. Would it work, especially since we neither know nor believe an allergy or the like is the underlying issue? We had initially asked our pediatrician to order some non-invasive testing, to see if the idea of possible opiates/opiate derivities or yeasts being released in Bobby's excrement would come out positive; the belief was that a possitive response would be a 100% yes that we need to move toward this avenue of change, to see if some of these changes will help him with his behavior. Our pediatrician, God love her, went through and read up on every test we asked for; she ultimately felt that they weren't worthwhile to run due to the risk of false positives/negatives. With her support, we decided to do the GF/DF/phenalic free diet changes without the testing. Her suggestion was to wait until the new year then start reintroducing foods to look for a change. She was amazing; one of the things we loved about the practice was the feeling that different views were explored and researched, and that honest conversations were conducted with parents. LOVE our practice. LOVE LOVE LOVE.
So, it's been a few weeks. Right away, Bobby's teacher and my mother-in-law noticed some changes, as have we. He's gotten more verbal. The first day, the verbal increases came as he asked- begged- for foods that were off the menu. He refused the replacements and ate the least I've seen him. All this time in, he's still eating considerably less. But here's the kicker: he's still gaining weight, he's sleeping like a champ, and his bathroom habits are normal (better, even). We're still battling some inappropriate behaviors and his language is nowhere near age-appropriate; the worst part is not knowing if it is diet, preschool, or therapy with an SLP (or a combination of) that is most beneficial.
At this point, it's a lot of GF/DF cooking, an increased food bill, and a lot of extra work- all worth it if it helps. We'll find out in two months if food has made such a huge difference. January will see the reintroduction of bananas (which I'm really hoping is NOT the problem because my monkey boy LOVES bananas). Then it will be a dairy reintroduction (which wont be that tough, since we dont do a lot of dairy anyway, but it will be nice since it seems like SO MUCH has freaking casein or whey in it!), followed by the reintroduction of gluten. If there are negative side effects, then that food is gone for good (or at least for a good long while!); it there arent, then we'll keep adding things back in. Part of me really hopes the food changes are coincidental and we can stop looking at every little thing (if we're going to do it, it has to be done right) and paying twice and three times as much for things. But, if it is the issue, then such it is and we go on from here at least knowing for ourselves that this was the right choice.