Friday, March 20, 2009

Autism Soap Box

We started Boston in a new therapy program this week and I couldn't be more excited about it. His therapists Katie and Julianna are creative, energetic and not afraid to be "child-like." Boston warmed up to both of them very quickly which is rare for him. They gave me great ideas for home and they both saw huge potential in him. I think it will be an amazing journey.

But for some reason it made me think about all the Autism "treatments" out there and I guess I feel some need to get on my soap box and voice my opinion because it is definately the minority opinion.

I DON'T think a vaccine caused my son's PDD-NOS. I don't plan on removing heavy metals from his body, putting him an a hyperbaric oxygen chamber, contacting a DAN doctor or eliminating wheat and casin from his diet. I don't think he has a "leaky gut" and this is bold of me to say, but I don't think other autistic kids have leaky guts either. I don't think Autism Spectrum Disorders are gut disorders; I think they are brain disorders that are there from birth. I don't believe they are environmental, I think they are genetic. I know I will be repremanded for sharing this opinion, but if all the "Mother Warriors" (as Jenny McCarthy) would say can express their opinions then I suppose I can also.

It's interesting to me that Mother's all over the world and even of our faith are calling Jenny McCarthy their hero. Ten years ago these same women would have ridiculed this woman for posing in Playboy and prancing around scantily dressed on MTV's Singled Out. Today, most mother's of Autistic children place her on a pedestal. It's interesting. I looked up to her more 10 years ago than I do now. I thought she was pretty and funny. Now I consider her one of Autism's False Prophets. She preaches biomedical interventions that have not been scientifically proven.

I hear Mother's who say there Autistic child is brain damaged by mercury or that they feel like someone walked in and snatched their child's sole. I'm sorry they feel that way but I certainly don't think that about my little boy. I think Boston is happy, full of life, and a joy to be around. I don't think Boston ever changed. He wasn't a very cuddly little baby. He has always had a strong attachment to me, but had a hard time relating to others. He had gross motor delays. He was running away from the playground and the other children and playing in the rocks from the time he was one. (Months before his MMR vaccine.)

I think Boston was born with a brain that is amazing at memorization and he can focus on something with great intent. He does tend to obsess about things and has a hard time socializing but that doesn't mean anything is necessarily wrong; just different. I strongly believe that we need the autistic mind. Some of our greatest inventions have come from people who would now be considered autistic. The diagnostic criteria has been broadened. I think 20 years ago they would have told me "nothings wrong with him; he's just a little slow to talk and shy." Today they say he has PDD-NOS or High Functioning Autism.

It's good they have broadened they criteria. I don't think he would have gotten the services he needs 20 years ago. He would have had to face challenges in life that he doesn't have to today but overcoming some of those challenges requires great work.

In my mind it's easier (not easy, but easier) to go the biomedical route and just change his diet or even easier, give him some supplements. It's hard to sit on the floor and get in his face and play with him for hours a day. I go through jeans like it's nobody's business from being on the floor with him doing therapy. It's hard but it's been worth it and I am so grateful to be able to look fondly on the time we spend together. I do things with him as a Mother that I wouldn't have normally done. Jenny wouldn't call me a "Mother Warrior" because I don't have him on a diet, but I'm ok with that.

This is not to say that the Mother's doing biomed are wrong. I think they are wonderful, loving Mother's who are trying to find the best for their child. Jenny, included. It's simply just not the route that I have chosen and I don't want to be shamed for it.

Jocelyn is receiving all of her vaccines on schedule and if I ever found out she had a form of Autism I still wouldn't blame vaccines. I see components of it in our genes. I don't think there is an Autism Epidemic; I just think it's more recognized. They didn't have ADHD in our parents days but that doesn't mean it didn't exist.

I am so grateful for Boston. I am so grateful he thinks differently. I feel bad when he struggles and I vow to help him in any way I can. That's why we have him in the best and most expensive program in the state. There is a picture frame in his room that says "Even the Smallest Person Can Change the World." and I think he certainly will.

I know we might have to go private because I may get threats after this post; but we are all entitled to our opinion, right? Wheewww.. I had to get that out. I feel much better now!

12 comments:

Jeremy and Molly Horn said...

I am grateful to have Boston in our lives too. He has the most wonderful spirit. He makes me laugh and smile and I hate going to long without hearing what Boston has done. We sure do love him. He has opened my eyes to a whole new look on life. Thank you for letting him be apart of our life.

Heather said...

Carly, you are such a wonderful Mother! I hope you know that! What an inspiration to everyone out there! Thank you for sharing!!! You have shown me how to have faith in your child instead of having fear of differences.

Kimberly said...

Good for you, Carly!!! Standing ovation!! If you go private, please include me, if you would like to! Your family is an inspirtation to me and I'd hate to miss out on your progress and love of life!!

Shawn, Hayley and Jack said...

Hey I am glad that you have Boston in this new therapy, I have tried to call you this week to see how it was going but you don't answer my calls, RUDE! Call me if you get a sec. I know you are busy!

Katie Cash Davis said...

I love your view--it's full of hope and I think that is right. Boston and Jocelyn are lucky kids to have you for their mommy!

JaNece said...

Wow, you are one strong momma! And I love that you are sticking by your feelings and opinions. As they say, "Mom knows best" and I feel like we as moms do have that sense to know what our child needs. Boston is awesome and we need him to come over for a play date!!!

Misty said...

I honestley loved reading this post - it was enlightening. Even though I do not have a child with autism, I have been so close to it and it's great to hear your thoughts about it.

From a nephew with Asperger's and a best friends son that has both Downs & Autism, and then Boston. Through all of it, I see the struggles that these kids go through. But, one thing remains the same and that is that the mothers of all affected by Autism & Asperger's that I know, are three of the greatest and most devoted and caring mom's I know.

Seriously, these children were sent to the right homes, even though it is the hardest thing to watch children have so many struggles. I love that you have such a strong opinion about what you are doing and going to do for Boston. I think that any mother/father faced with a challenge, definitely needs to have a plan.

I enjoyed your thoughts and sometimes, getting your thoughts out is the best medicine!

Jamie said...

Good for you for stating your opinion!! I couldn't agree more!! Every pair of worn out jeans you own is a testament to the amazing mother you are!! I am so thankful Boston has a mother like you!!

Marla Valdez said...

Carly,

I was one of the moms that was supposed to meet last Friday at McDonalds, but I couldn't make it. I saw your blog through the Autism Coalition and checked it out! I read this blog and it was such an inspiration that I am not the only mom that doesn't think biomedical and the GFCF diet is the way to go!

Jenny makes me so mad, and I do agree that she she is held to be an "Autism Prophet". I was in the hospital giving birth to my second child when she was doing the TV show circuit, and I thought that I should follow what she said.

I bought the books, fed into the expensive diet (that didn't work) and thought for a second that maybe we could "Go Green" on vaccines! I was just hoping anything would help!

Your blog and son is so cute! I love his name! My son is 3 1/2 and his name is Cassius (pronounced cashes) and I am a fan of unique names! I hope that Michelle plans another moms group and we can meet!!


Take Care,
Marla

davenportreport said...

Carly, I know I'm a little late in responding to this post, but good for you is what I have to say! Good for you for going with what your instincts as a mother tell you. Boston will be blessed because of your diligence, love and dedication to him. Keep on going!

Amanda said...

Wow, what a post Carly. What an amazing blog. Thanks for sharing and we will do our best to come to the walk in May. Love, Amanda (and Shane and the boys).

Anonymous said...

I hope you don't mind me commenting. I found your blog from your sister's who used to be in our ward. I've been wondering about our own little girl if she may have some type of autism. we haven't yet talked to her pediatrician yet about it. She's very obsessive, doesn't make eye contact and walks on her toes and spins. But, I am with what you wrote 100% whether she is considered autistic or not. She is the brightest 2 year old I know and can do things I probably couldn't do. I don't even know your baby boy but he sounds like a joy. Keep up the good work mom!