Monday, March 24, 2014

Evaluating the Evaluation

Long rambling blog post about the insufferable evaluation we put Sofie through will be posted in the coming days.

Tuesday, March 18, 2014

Sofie's Journey: Countdown to Lighting it Up Blue For Autism Awareness Month

Time for Mommy to Let It Go

Today I have been OUT for the count. Sinus infection, enough said. My sweet husband took over today. He did an awesome job. He is a wonderful Daddy. And I was amazed at HOW much of a creature of habit I am in my parenting style. Sofie is our first so it is impossible to tell if my style is because she is our first or because she has Autism (or a little of both). But regardless, I caught myself a few times about to say "Oh we usually do this.." or "She doesn't like it when I I do..." Just realized this evening that full-time preschool will be a big adjustment for Mommy-and a necessary one. ASD or no ASD it's time to shake things up for my sweet little control freak (apple doesn't fall far from the neurotic tree).

Sunday, March 9, 2014

A Mommy's Manifesto: Breaking our kids out of the box we put them in

What a time we are having on this journey with Sofie. It is becoming oddly laughable how much we push our children to be "normal." As a simple fact, it is something I have always known but life with Sofie has given it shape and texture. I can really SEE the absurdity and I feel like a fool. Sofie is waking me up to my own absurd role in the predictable dance. Growing up I was an oddball kid with a secret wish "be pretty, accepted, have the body of what I saw in the magazines (so on and so on)." It's an embarrassing admission and yet I know it's an obvious one. I fell into the trap and I sadly I did what was expected of me. What pushed me? My parents celebrated my quirkiness and let "me be me." Where's the push? I think my brain betrayed me. Of course, there is the more abstract concept of "personality" to consider but I will push that to the side for now. Right now I am stuck on this idea of "improvisation versus imitation." Years ago I saw a nature documentary on the intelligence of apes. In the documentary a scientist did an incredibly simple experiment to illustrate Ape's neurological edge over humans and sadly its biggest hurdle. The scientist travelled to remote villages and presented children with a black box. She would demonstrate a series of steps the children would need to perform in order to open the box and receive the prize. The children watched intently and performed the tasks perfectly. She did the same experiment with apes. They too passed with flying colors. The next level of her experiment is brilliant in my opinion. She gave the children a clear box. The clear box revealed the inner workings of the puzzle they needed to solve for the treat. She began to demonstrate the series of steps and it was obvious that the first few steps were unnecessary to perform the task. But time and time again the children imitated the scientist's actions (always including the unnecessary steps). The scientist tried the same clear box experiment with her apes. And time and time again, they proved to be smarter than the children. They saw that those first few steps were unnecessary and it was only the last step that was necessary. So consequently they omitted the scientist's first few steps and happily retrieved their treat. The scientist concluded that while the ape clearly has an edge over the child its the ape's impulse to observe and improvise instead of meticulously imitating holds it back from learning more complex tasks. Now my child is not an ape and I am not suggesting any child on the Spectrum think I am comparing them to a monkey. But I am stuck on this pull between improvisation and imitation. What if our Spectrum Kids hold the possibility of having the best of both worlds? I understand Sofie needs to learn to imitate more consistently but I know she can imitate. As she would say it's "poppable (possible)," She does imitate when she feels like it. And she spends the rest of her energy running, exploring and questioning the semantics of my cliche' parenting lines. "Sofie, you can't do that",,,"Buh I did dat." We just had Sofie evaluated for school. The evaluation team are good people called to a vocation of helping atypical kids. But I must say I think the system, like so many things in life, is very flawed. My husband and I were honest with our responses and spoke freely of Sofie's challenges and we were proud to share our stories of her incomprehensible brilliance along with how far she has come in a year. I noticed the team did not write as quickly on their clipboard for stories of Sofie's brilliance. In the observation room I watched these strangers feverishly ask Sofie to perform tasks and quickly scribble down when she refused (which was often). It was later explained to me that while Sofie performs some tasks "at age level or MAYBE older" there are more basic tasks that she appears incapable of doing. A theory was told to me by one of the members of the team. She said she thinks Sofie's self-directed behaviour is a reaction to her frustration and confusion when asked to do something she doesn't know how to do. l'm not buying it. I know in my gut that Sofie gets distracted by the textures, colors, smells and almost infinite possibilities of an object. THAT is not a disability. I'm getting tired of hearing that word- disability. I think "disability" is a word to state obvious things. While of course in the academic sense of the word, we need it to protect people's rights and make sure they get every equal opportunity. But why are we stuck on the word? Why does our society obsess with this checklist? Why do we segregate? On some level we are all learning disabled if you think about it. I am an incredibly visual learner. I have trouble listening to people for long periods of time without getting distracted. I'm terrible at finishing books. I'm terrible with directions. I get stuck on landmarks. I'm terrible with numbers. While you read this, think of the long list of things you struggle to learn. Think of when you were a kid. What did you struggle with? I was never labeled with any disorder or learning disability. Perhaps we are all on a spectrum-not the Autism one but a spectrum nevertheless. And for some reason we have come up with this checklist to determine who is normal. I want to make clear that I am not making light of the very challenging learning disabilities and disorders millions cope with everyday. All I am asking is for us to break the cycle. Forgive the language but screw normal. I will get Sofie the "help" she needs. But I am not going to look at her like she is less-simply beause she is so much more than many of us can understand. I'll play the public school game. I will sign off on lengthy paperwork and get Sofie where she needs to be to thrive. End of story. Well, not that easy. It killed me seeing Sofie in that evaluation. When we got home I cried on the phone to our case worker. I felt Sofie was bullied. I felt like I didn't protect her and put her in a situation to be judged by strangers. Sofie saw me trying to contain my tears. She walked over to me and said "Mama, Mama" as she shook her head in what looked like disbelief. She climbed up on the couch and stroked my cheek and gave me a kiss. I think while Sofie's beautiful brain is giving her some hefty obstacles to face it has also given her some amazing gifts. Her brain and her spirit are going to take her out of the cycle (and hopefully our parenting will). She will learn to imitate but she is never going to apologize for being a true original. I am going to try hard to be a little more like her everyday. Let's help our kids learn but stop trying to make them fit our antiquated definition of "normal." Seriously, let's do this!

Monday, March 3, 2014

A Perfect Moment

Lots of clutter in my brain on any given day. It's nice to have these quiet moments that shake some sense into me. Sofie gave me a nice reality check. She was incredibly cranky when she woke up. :)