Saturday, February 4, 2012

My Defense of Neuro-Diversity

I was running late as usual. I rushed into the meeting room, slightly out of breath, and found the closest chair. I sat back and observed the faces around the hastily pushed together tables. Mostly women with a few men scattered in the mix. Many faces were tired, shoulders heavy from having the weight of the worlds they carried on them. These are my fellow sojourners, I thought. These are me only a few short years ago. How I understand the load these precious few carry. How I understand that blessing often comes wrapped in the swaddling cloth of burden. My moment of observation ended as I was introduced. I smiled and added a few details about my life. Then the questions started, questions I love to answer, answers I hope help to unwrap blessing from the clothing of burden and rewrap it in the swaddling cloth of hope. Yes, these are my fellow sojourners and I have an amazing story to tell them. The story of my journey as the mother of children with special needs.
I was honored to be invited to attend a parent meeting put on through our local SEPAC (Special Education Parent Advisory Committee) board. I was blessed to sit on the board before I removed our children from the public school. I know firsthand what a fantastic group of people this is . They have amazing hearts for the special needs community within our town. They would never expect it but I send them huge kudos for the work they do within our community.
I get asked all sorts of questions about our journey. "What doctor do you use?", "Did this or that diet work for your family?", "What is an IEP or an ARD (as they are known in TX)?", "How can I effectively advocate for my child?" The questions are as varied as the spectrum itself.
The truth of the matter is that autism is spectral and every child is completely unique and individual; so what works for me may or may not work for anyone else. However, there are some basics that go across the spectrum. I say it often and frequently: my attitude was the first thing that changed before ANYTHING else did. I had to change my whole view. You see originally autism was something that had happened to us. It was a future robbing, energy sucking, and sanity stealing tragedy. I had to learn to embrace autism. Now many people think this makes me a Pollyanna. I don't know how often I've heard "You wouldn't feel that way if your child was more severe." or "You are not living in reality! Autism is something to fight, to cure. You might as well say that cancer is to be embraced."
Let me clarify. First and foremost embracing autism does not mean that I do not believe in therapy. I believe firmly in getting my children the most help I can to help them succeed in the world. Every child must be given tools to make his or her way out in the world. For a spectrum child, their tool belt must have many adaptive tools. In embracing autism, I accept that autism is lifelong, it does not go away. It is the way my children were made and we will work within the frame work we were given rather than fight against it. Secondly when I first embraced autism my son Jamie was severe. He screamed for at least 10 hours a day. He beat his head bloody if I didn't restrain him fast enough. He did not talk. He was not toilet trained. He broke my heart every, single day because I could not reach him. In this time is when I learned to embrace autism. You see the doctors gave me little hope for Jamie. They wanted me to medicate him to control the melt downs. I said to myself and God "God you did not give me this child without a plan. You knit him together in my very womb. I don't know what that plan is but I do know that Jamie is fearfully and wonderfully made. I know that he is not broken. I love the son that you gave me and I promise to do the very best we can for him. I accept that he has autism. Now please show me how to be the best possible mother to the son you gave me." Let me tell you that is a hard place to come to. To come accept the people in your life the way God gave them to you opposed to the way you want them to be. It was at this point that I was able to truly get Jamie help. You see before I didn't want my son to be labeled. I feared what others would think. However, Jamie being "labeled" was the absolute best thing for him. I was able to get him therapies that helped him to build the bridges of communication he needed. In Jamie's case he slowly became fully verbal. This does not happen for every child, some children remain non-verbal. This however does not reflect upon their intelligence or the plan God has for their lives. If you need proof watch the documentary "A Mother's Courage: Talking Back to Autism” It is AMAZING the huge strides being made within the nonverbal community.
Neurodiversity Rock is the mantra you will hear often in our house. I want my boys to understand and accept that God does not make mistakes. That he created each and every one of us as individuals with a purpose in this life. I have learned more from the least of these than I have ever learned from the learned and great. My life has been revolutionized by this. My family’s lives have been changed and the world in which we live our lives is being changed. God does not make mistakes, my children are not broken and neurodiversity truly does rock.

1 comment:

Dee said...

OH. MY. GOODNESS. I needed your words tonight. I don't have any children with special needs, but your words were still life to me tonight.
...God DOES NOT make mistakes!...To come accept the people in your life the way God gave them to you opposed to the way you want them to be.
I needed to hear those 2 things tonight. Thank you.

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