Sunday, October 14, 2007

In light of recent events

I began this blog under siege.

The world of special education, the world of autism parents, the world of therapy offices is a strange, labyrinthine place. There is ashes and dust and pits pits pits. But there is also eleanor and ents and elves. I still sometimes feel I am fighting the Long Defeat.

As a parent of a newly diagnosed autistic child, trying desperately to find the best ways to support him, I was stunned by the quagmire of information, misinformation, bullying, exploitation, abuse, and manipulation. I've been trained to research, to think critically, to sift through fact and fancy and analyze the findings. Yet I found myself with snippets of information, impassioned beliefs, and little I could assign as "fact."

I was in a sea of ABA Fascists who insisted that every autistic child receive 40 hours of ABA therapy. I was surrounded by parents subjecting their children to shots, diets, creams, medicines, herbals, and therapies for which I could find no substance or reason. I was judged a bad mom for protecting my children against diseases that not only kill, but had killed children in our very own neighborhood, one not a year before Joey was born. I was publicly judged a bad mom for not subjecting my child to hours and hours of repetitive, unindividualized and static methods of teaching by poorly trained college kids. I was judged a bad mom for taking my kids out in public, teaching them hands-on like any other kids. Other parents stopped speaking to me because I wasn't approaching Joey and autism the way they did, using the methods they employed for their own children, advocating for the services they wanted for their own kids. I was given a book by the doctor that proclaimed 70% of children with autism are mentally retarded. Joey would never be independent. He would never understand other people as anything but objects. He would never be able to read emotions. He may never speak, or communicate at all. He would never form relationships.

I can only speak for the truths I have discovered about my own children. I am still discovering; but there are some facts I can present without doubt or hesitation. My children are not metal-poisoned. Not lead, not mercury, not aluminum, not cadmium, not arsenic, I could go on. My children have "theory of mind." Joey knows Andy likes dinosaurs, for example. When he was picking out a treat for himself today, he insisted on picking out a dinosaur for Andy, because he knew- and communicated to us- that Andy would like it. My children are not mentally retarded. My children have friends, and are very attached to them. Joey and Andy both not only communicate, but want to communicate and relate to other people. ABA has helped Joey. He does not need 40 hours of discrete trial training per week. My children are is not allergic to gluten, casein, or chocolate. Joey was already autistic when he was born. Joey is a beautiful, wonderful, joyful, intelligent, squishable little boy. I love Joey. Andy is not autistic. He is a handsome, loving, fantastic, smoochable little boy. I love Andy, too.

There I stand.

I started this blog in hopes of communicating with other parents who may feel lost in the quagmire. In a community that desperately needs parents who are united, networked, and supportive of the diversity of approaches and coping strategies, we are instead often isolated by other parents who think they have the one and only answer. I wanted fewer parents to feel desperate, alone, and forever separated from the gifts God has given them- their children. As they are. Start from here. I wanted to dispel a little of the fear, the uncertainly, the isolation, the dark.

What I found was that I am not alone. There is nothing to fear. And you'll separate me from my children when you pry them from my cold, dead fingers, thank you very much.

Thank you, Kev.

11 comments:

JoeyAndyDad said...

Splitter!

Joeymom said...

It's only a model.

Niksmom said...

I loved this! Im so upset about the LB/RB situation. I've been emailing Kev about it.

Club 166 said...

I just found out about this. I am sad that this has happened, and angry at those who would treat Kev in such a fashion as they did.

And yes, I am forever thankful to Kev for being an island of sanity and reason. He has served as a beacon of truth, and I will miss his presence desperately.

Joe

Steve D said...

Hi Joeysmom and other commenters-
Lets just keep doing what we're doing. Keep blogging with positive messages such as this one. That's what we need to do for our kids.

Sharon said...

Hi Joeymom and thanks for this post. It explains your position very well. What has taken place is terrible. I am so angry at the lack of humanity shown, for anyone to think it's OK to treat a little girl like that.

mumkeepingsane said...

Fantastic post. Sounds like we took a similar journey.

So upset about what happened to Kev. Wishing him a wonderful life with his beautiful family.

gettingthere said...

Great post, joeymom. I too am very upset about LB/RB and angry with the person who drove Kev to it. I'll be forever thankful to him for his beautifully articulated posts.

Kev said out loud what I was hesitant to say to "kind" people who offered me tips for my particular aspie child. He was born autistic and absolutely loves pasta, all dairy products and chocolate. This particular child wasn't poisoned by anything or allergic to anything except pollen and ill-will.

Best wishes to you and your beautiful children.

Amanda said...

excellent post...i think that sums up what many parents, my husband and I included feel...
going to miss LB/RB

mcewen said...

Looks like we're all in the same little life boat.

Capn. Kev sure kept us all afloat in the right direction.

Ahoy mateys

Heidi said...

late to catch up after a holiday -
what a great post. I, too, am gutted about LB/RB. I started my life as an autism mum on 'the other side', but it was Kev's blog that first scared me shitless and then educated me and kept me on the right path. I wish him and his family well.