My brain is a whirlwind. There are fragments of thoughts and new ideas blowing around in disorder. Writing is how I nail those pieces down and begin to mosaic them into some sense. Right now there are so many pieces that I've not blogged because the prospect is daunting. I'm not sure I can arrange all the thoughts and ideas into a pattern that makes sense. So this one is not for the grandparents. It's not for anyone else. It's just me. Nailing down some stuff. A first attempt at order.
I'll begin with Thursday. Thursday was the beginning of the long awaited evaluation at the Child Development Unit at Children's Hospital. I love that place. They are amazing, and they understand kids. End plug. Anyway, we spent our morning with a team of psychologist who did IQ type evaluation with Abby. Before the testing they spent time playing. The room with the testing was a pale green shade and the florescent lights were off. They fitted the table and chair size just for Abby and took breaks for "heavy work" ( a regulating technique we use at home ). Essentially, they set her up to be successful. Which, as a mom, I appreciated. But I found it interesting to watch how they understood she needs an adjusted environment. She just does. And it's work. Now, granted, all kids do there best when set up to succeed, but florescent lights and background noise wouldn't derail my neurotypical kids.
So, with Abby, it is a constant dance; we go before and behind her making adjustments along the way so that she can be successful. To most people they are invisible, these adjustments, but if we slack off (and sometimes we do) her little world quickly unravels. The psychologist got this. And they commended me on my bag of tricks. It brought tears to my eyes, because what most people see is a sometimes out of control kid, with parents who don't appear to be disciplining her. It felt good to have what I see validated, and what I do appreciated. Because very, very few people get it.
We have more testing and we'll be seeing more specialists, but the IQ testing was revealing. She absolutely aced some of the language testing. She even seemed to get some of the analogies. But there were holes in her visual spacial reasoning and her ability to grasp complex directions. The scores haven't been tallied, but they reveal a pattern consistent with data on prenatally exposed children: Strong expressive verbal skills, challenges with math and abstract reasoning.
So I am highly suspicious that we will, indeed, get a diagnosis that is on the Fetal Alcohol Spectrum. I'm glad of this, and sad. A diagnosis explains behavior. It gives me tools to advocate for Abby as far as an Individual Education Plan and public schools. It has protective value for her as an adult, and will give her access to services and support. I can look into therapies that are appropriate to this type of brain damage. BUT. BUT. It ain't going away. It's forever. And the implications are far reaching. Sometimes they will be subtle and sometimes they won't be, but they are forever. Forever feels like a long time. For her, and for us.
One of the challenges for me to accept as we parent Abby is a need for a stripped down version of life. She thrives on simplicity and routine. She always will. I think that this is boring. I feel guilty that my bigger neurotypical kids live with a stripped down, simplified version of life too. I feel like they miss out. They do miss out. Just recently, I read an article from a brain researching MD, specializing in trauma (Bruce Perry), and it was encouraging. Because he said boredom was good for kids; it's the catalyst for creative play. Play is great for all types of brain development. So those long afternoons of legos and pretend are nothing to feel guilty about. They were an opportunity in disguise.
The challenge remains though, how do we keep life simple for Abby, but allow opportunity for my older kids to stretch their wings? For us, part of the solution is Westgate. School offers respite for them, because Abby is not an easy little sister. I'm praying for good friends and fun experiences, because I cannot do it all. In the past God has brought people and opportunities into our path when I didn't have the bandwidth to meet every need. I will have to trust he'll continue to do that for us. For Eddie and I. For the "biggers". And for our peanut too. (By the way Dad, your camping trip with the "biggers" falls into this category of meeting needs I cannot. Thank you a thousand times. It's huge for us.)
Another piece of the mosaic: this job possibility. It's looking quite likely. I'll hear very soon. I ran across this position on accident, and it looked like such a good fit with my passion for adoption issues and my background in education that I applied. It's the kind of job I've dreamed about. Yet,as the possibility sits on my doorstep I find that it's not an easy decision. Simplicity and me working do not go hand in hand. It definitely complicates things. Just as the kids need respite from a life of catering to special needs, I find I need it too. And that is guilt inducing, because those needs aren't going anywhere and they do need attending to. I wonder if my decision to work will complicate things in a not so okay sort of way. Yet...it'd work great with the biggers, and I do have good options for childcare.
There are other pieces too. Like Eddie traveling, and church, and upcoming adoptions, and family etc. But here is my start, my nailing down of a few. More to come.
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