Hello All,
Well, this is my first attempt at blogging. Many of you call and ask for updates on us and the girls, mostly Madeline, so I thought this would be a great way to keep everyone posted.
I'll give you all a brief history and then I'll try and keep it up to date with the latest ongoings.
As you all know, Madeline has autism. Wow, so crazy that I just typed that. I was in denial for so long, I wouldn't even say that word let alone put Madeline's name in front of it. Granted we knew something was up when she was about 16-18 months old. That was the time where she stopped looking when her name was called. She also became obsessed with things, like hand clapping. Of course, I just thought she was adorable and liked to clap. She also stopped speaking to us and started constantly reciting cartoons. I chalked it up to me being a bad parent and letting her watch too much Dora. When Madeline turned two we took her to her pediatrician for her check up. I told her all of my concerns and was told that she was just being two and that's how children learn to speak, by repeating what they hear. Again, since I was in denial, I took her word for it. After Christmas that year we began looking into it a little further. The county had an early childhood program and they would come to your house and observe your child. Of course, Madeline was an excellent test taker, since she's smart as a whip, and passed most of the skills tests with no problem. We had to break it down differently to the observer. We told her of the running in circles and constant reciting. We were sent to Vancouver Children's Therapy Center for another observation/screening. They cannot give you a diagnosis, they can just recommend treatment for delays. Madeline showed significant delays in social play and cognitive skills. She then started the preschool for the 2yr old program. She hated it. I had to stay for the first 5 weeks because she just screamed the whole time. During this time we took gluten and casein out of her diet. It's something that a lot of people try, some with more success than others. Madeline didn't seem to have any real significant improvements with it. Finally she got used to preschool, just in time for her to turn 3 and be moved to the Vancouver School District's 3-5 program.
Around the same time Madeline was seeing Dr's for gastrointestinal issues. I'd been reading about the gut/autism relation and decided to investigate further. I took her to a gastroenterologist, who basically looked at me like I was nuts. So, skipped him and when to a Naturopathic physician that was recommended on one of my mom groups. It took him approx 5 weeks to get her gut in check. He ran an ELISA test on her which basically shows intolerance's to foods. Madeline's list was very lengthy: wheat, dairy, soy, nuts, sugar, blueberries, beans, peas..... Obviously, we then made a lot of diet changes. He also started her on a probiotic for abdominal issues which she still takes and seems to work wonders on her belly.
We are also trying some biomedical treatments. Removing yeast, viruses and other toxins from her system. I haven't seen great improvement with any of these either. She just started vitamin b12. I'm reading a lot about it online and I'm hopeful that it will help with her awareness and eye contact.
The one aspect of Madeline's treatment that we do see great strides is with her ABA treatment. Here is a link that will describe ABA.
http://www.polyxo.com/aba/Mary Ellen found us an amazing ABA consultant,Audra, around this time last year and she has been working very hard with Madeline. She also hires additional tutors to work with Madeline at our house. Madeline has her good days and her bad days with them but overall she's doing really well. She's always asking to go to Audra's house. Probably because she has all the cool toys!
In December, Audra and I took Madeline to OHSU to get her official diagnosis. It was 5 hours of playing games and taking "tests". I sat in a room with a developmental pediatrician and answered a hundred or so questions on Madeline's abilities. When I told him she'd already been doing ABA for 6 months he was shocked. He said "so you're acting like you already know what her diagnosis will be". I agreed, by this point I knew she had autism, I just needed him to tell me so I could get some help from our insurance company. So basically, that's what he said and he handed me a pamphlet on autism and sent me on my way. It was a complete waste of time.
She is currently going to preschool at Vancouver School District's Early Childhood Center. It's a really touchy subject for me since they are really not equipped to handle children with Autism. They have no training or specific classrooms for children on the spectrum. They are overcrowded and understaffed and it's a wonder why I haven't moved her out of there already. Mostly because there really isn't another option in our area. You would think that since 1 in 88 kids in Oregon have autism that we would have amazing schools around to help these kids. It's just not the case. I'm currently researching other districts and schools in our area. We may just have to move to get her the quality of education she deserves.
So here it is a year after all of this began and Madeline is doing very well. The main improvement that comes to mind is the eye contact. It's not great, but it's so much better. She also asks for what she needs all the time. Granted, Madeline has always had a ton of language but it's never really been functional. She has hundreds of words in her vocabulary but she uses them for reciting and not for functional converstation.
A question I get asked a lot, I think all mom's get asked a lot is "why". "What do you think causes it?" Well, here's my opinion. It's an opininion I'm borrowing from Jenny McCarthy. I think all kids are born with a bucket. All of the buckets are full to different levels. Additions to the bucket included genetics, environmental toxins, allergies, stomach issues, etc. Then I think at some point, maybe when children are given 36 vaccines, their bucket overflows and their brain is shocked somehow, thus throwing them into the world of autism. In other words, I don't believe one thing causes it. I believe it's many things all added together to form a toxic situation.
Abby is 1 now, she's been carted off to Madeline's therapies since she was a week old. She's just used to it. She does get jealous when people come in and out of the house all the time to play with her sister. :) I have to make sure they all stop to say hello to her too.
Jon and I are well, just a little stressed out! :) We are very lucky to have parents that are very interested in helping us in any way they can. I also accredit most of my sanity to Missy who listens to me whenever I need her and never thinks I'm crazy. Well, at least she pretends not to.
:) Kim
Here are some of my favorite links for those interested.
http://www.talkaboutcuringautism.org/index.htmhttp://www.autismspeaks.org/
