This past Thursday afternoon, Jason, my dad and I attended an Autism Spectrum Disorders 101 workshop at Fraser Center. This workshop was recommended to us at our pre-assessment appointment back in March. The class is meant to give families and caregivers a better understanding of the characteristics of ASD, the diagnostic process and to introduce some of the intervention opportunities that are available.
Something that I found very interesting was the difference between a medical and an educational diagnosis. In order for the school to evaluate a child they have to have a 25% delay in at least two areas. With a medical diagnosis there are no qualifiers that need to be met for evaluation- just the suspicions of doctors and family. The example she gave to us was a young student is labeled ADD/ADHD and ten years later they are diagnosed with Asperger's. Because they were not delayed in enough areas while in school their Asperger's went undiagnosed.
One thing that we talked about a lot was scheduling. Schedules organize the world and reduce anxiety. From dinner time to bedtime I have Amelia on a loose schedule. What it entails is: eating dinner, watching Netflix and/or playing with Joe while mama picks up the kitchen, reading a book/playing something with mama and Joe, bath (sometimes with Joe), diaper-lotion-pajamas in mama's room, pick out a movie while mama gets "two cows" (white and chocolate milk, mixed) and then getting settled into bed to watch the chosen movie. If I deviate from this "schedule" it can get ugly. It took me a long time to figure out that bath seems to be the key to a smooth night. To me, it seems that her bath triggers her to realize it is time to calm down and relax. The nights that bath doesn't happen, she is often up until eleven, even midnight.
There are many ways to help with scheduling involving the use of visual tools. We were introduced to several that we liked and are hoping to incorporate some into our daily lives at some point. We are waiting to schedule a visuals consultation with someone through Fraser (read - mama just needs to call her back...) and there is also a workshop that we can attend. By doing these they can help us tailor some of the models to work with us, and Amelia, best. More to come on that!
Let the small things go and focus on the important things.
This is something the teacher said more than once and something that I have been trying hard to remember - long before we took this workshop. I have always been an ordered person. I like things neat and in their place. Clutter drives me nuts! With children that changes - obviously!
This mantra needs to carry into all parts of our lives though - not just in regards to having a clean, neat house. If Amelia won't eat what the family is eating is it really the end of the world? No. She wants to wear her Dora Halloween shirt in May? Why not. We need to focus on the big picture. Traditional parenting is essentially out the window. We've been encouraged to find what works for us and stick to it.
Here is what we know works for us - keeping frustration levels low - in all of us. We have a child who is unable to effectively communicate with us very often. Either she lacks the vocabulary needed or we are unable to understand what it is she is trying to say. Frustration levels around here elevate at a ridiculous rate some days. So if she wants macaroni for dinner and we are having tacos? She can have the macaroni. We will still offer our meal with hers but if she only eats the macaroni, that's ok. She ate. There is no sense in driving up everyone's frustration levels over something like macaroni vs. tacos. When frustration levels are elevated communication suffers and since we already have a hard enough time communicating we don't need to make it worse over the "little things." *We have a consultation regarding food and meal time scheduled through Fraser.
I have heard from some people that they think we are too "soft" as parents or that we "give in" to her too easily. Here's the thing - we are doing what works for us. If we play "tough love" with her she does not learn anything. We do not accomplish anything. All that happens is everyone is frustrated and upset and there is crying and yelling. In fact, the one time I tried to be "tough" with her at bedtime it resulted in her getting progressively more upset to the point that she threw up. Yep. Eleven o'clock at night and she threw up which meant a quick bath and bedding change. I had been up 21 hours at that point and had to be up in 4 more hours for work. Sorry, that does not work for us.
We learned a lot at this workshop. A lot more than I wrote about here. At times it is overwhelming but there is not a whole lot we can do except educate ourselves and continue to practice patience.
While we were at this workshop, Nana (and later Auntie Kim joined) babysat the kids! Amelia and her read The Cat in the Hat several times it sounds like: