Monday, March 10, 2008

My first installement

Well, here is yet another attempt at a blog concerning our son Casey. He's nine years old, handsome, tall, funny, and Autistic. My previous blog about him centered around our attempts at trying the gluten free casein free diet on him (gf/cf is what I'll refer to it from now on for those who don't know the acronym). I went back to it a few days ago and read my various installments and had a feeling of sadness at my perceived failure of it all, relief that we weren't doing it anymore, and curiosity at what if I had done it longer, would it have made a difference?

Then, I discovered something else by reading it, I'm not a bad writer. A dear friend of mine recently gave me the opportunity to write a column in a publication she works on concerning Early Intervention, and our experience with it. It was sorta, for a lack of a cornier word, exhilarating. I was able to write about something that happened to me, and it seemed readable, and oddly enough, informative. Perhaps, it will help others who read it, that would be awesome! But selfishly, I have to admit, it's quite exciting to be in print, and to be able to have others read my work. I even got paid! But best of all, and this is going to sound realllly selfish, they feature 3 of my favorite pictures of Casey in it, and I am just so proud to be able to share his shining smiling face in an article about Autism.

This thought brings me to why I am starting this blog. Recently, I have found myself starting to free my being from what almost seems like a cult of Autism curers, for lack of a better title. A little background, I began attending various biomedical conferences back when Casey was probably around 4 or 5. In these conferences, I began learning about all the "horrors' Autism reeks on the bodies of "these" children, the digestive issues, that lead to the brain issues and behaviours, that lead to the self injurious behaviours and odd behaviours. I was scared out of my mind! I immediately started taking small steps at "curing" our son-epsom salt baths, that was a good and easy start! Supplements!!! YES, supplements, those will make all the difference, I must teach him to swallow pills! And, he did, and he took them, and, he's still Autistic. WE MUST TAKE HIM TO A DAN PRACTITIONER!!!!!!!!!!!!!! We did, and we started all the supplements he suggested (and by the way, awesome guy, I'm not belittling him or any other good DAN doc). But something in me never did the follow up. Fear of taking him to get blood drawn (an absolute nightmare)? Fear of what I would find out. Fear of what I would find out are things that I couldn't help anyway? Was he going to have me chelate him? I don't want to chelate him! I just don't!

I have spent hours online, reading the biomed boards, struggling with the "diets" which I am not even going to get into (see my other blog, the gf/cf chronicles). And I am still struggling to this day. I am not so much trying to find that silver bullet anymore, because there isn't one. I don't go out and buy every new supplement I read about anymore, heck I forgot to give him the basics that I give him now.

I have found myself suddenly leaning to a more freeing, if you will, movement. For all intents and purposes, once could call it the "Autism Acceptance" movement. I think I began looking at this movement when the whole Jenny McCarthy shit started playing out! For some reason, it bothered me that this person who used to pose nude, do really stupid sickening comedies, and seemed like a box of rocks, was suddenly the spokesperson for those of us trying to help our children. I hated it from the get go, but found so many others praising her name, putting her on a pedestal, buying her stupid book in droves. What the hell? I think what I found so offensive was the way she was on soooo many talk shows all at once, as if she were on a press junket for a new movie (well, she was I guess on a press junket for her new book). What a hero, getting on every show possible, pontificating about she "cured" her son! "Cured" her son of this horrible Autism! What a saint......Take a deep breath Bon!

She's not the only, although most notable, one. I started getting on a message board that pertained to parents doing the gf/cf diet, and some of the members claimed their children were "cured". I don't know why, and I still don't, but I found that so offensive. It's not like, and I'm only speaking about my son, he has leprosy, or cancer. And know that I am coming from a place of having a child with Autism, who at this point does not have horrid behaviours, does not have gut issues (as far as we know), who is verbal, who can read, and whose biggest issue at school is attention and focus. What was I trying to cure? His funny gate when he walks, his perseverations(although irritating, make up his personality in some ways), his nasty sleep habits (more my fault than the Autism)? What was I trying to cure, or really, change?......

So, having said all that, I have decided, in honor of the Autism Acceptance Movement that I have now embraced after reading numerous blogs and watched several wonderful videos pertaining to, I am going to share stories about my son, on a daily basis, in the hopes of helping others accept their child with Autism. I am going to share strategies and ideas that I have learned and will learn on dealing with issues. I have a saint in my life who is an OT, and my sister. I get thousands of dollars in free advice, and I am going to share that. I want people to stop trying to "cure" their child, but embrace them, enjoy them, better them. And most importantly, accept them. I was thrilled to be able to have a brief back and forth with the Autism Diva, and her words still ring true to me. They pertained to my questioning her on biomed. I am not quoting, but summing up that she feels that if a child has valid health issues due to Autism, by all means, they should be helped, and I agree 100%. But don't think there's a magic bullet out there, because there isn't. If ya find one. let me know!

Oh, and I am also starting this blog to continue the fulfillment I feel as a novice writer. I may not get paid, but just putting my thoughts down is reward enough. And what could be better than writing about my son?