It was our first day of evaluations yesterday. From one of the places I have gotten in touch with. Of about the seven or eight I have called. Of the five of those I am on some waiting list, that is holding up progress on the other two.
Never thought I would be saying the Department of Education is ON it but they are ON it in comparison to many of the other hospitals, doctors, and groups I am reaching out to.
I even have us on a waiting list for a sleep research study that will help continue studies as to why children with developmental delays, mainly autism, have issues with their body clocks and melatonin levels.
I have been locked and loaded from the get.
However, this evaluation has set up a whole new battleground for me.
Initially I just had to know someone, that knew someone. And then there were a bunch of others (all someones and others are beautiful people that have either spoken directly to me, to my mother, or to a friend to tell me to call them, and if I haven’t called yet, be reassured that I will and that you are all amazing). These others named places, or people, that I should speak to or sign up with. Some of the strangers I have spoken to, I already refer to on a first name basis. I was content, progress was made. I even slipped a bit in my note taking because I felt like I was unable to do much else but wait and bite my nails (yeah, that started again – it’s been years). And I also felt like I was reaching a point of acceptance of all of this in my life. Maybe comfortable acceptance. I did a lot of crying and freaking out. I did a lot of hugging and holding my baby. I thought going into this evaluation I had gotten through the worst emotionally (at least for now) and that this process would become less of the log flume and more the lazy river of evaluation after evaluation and, tada!, answers after answers.
No. Just, no.
I will tell you why.
Besides the obvious, of course, that this is going to be an evolving process, a painful one. No lazy rivers. This was going to be the keep-flinching-just-in-case-something-happens process that includes fighting for services the DOE can’t give me, fighting for an appointment to see ONE doctor and get ONE FINAL WORD on what is going on, and fighting for this little person that I carried for 40 weeks, raised for 3 1/2 years, and whom I just had the pleasure of meeting yesterday.
The psychologist who came into my home sat on my bed in my bite-sized Brooklyn apartment since I don’t have a living room and patiently waited for my baby to come out from the closet, where she was hiding for several minutes prior. She asked me a ton of questions while Scar just ran back and forth, hiding in different ends of the house and then running across the floor screaming, “Happy birthday, Mommy, what you doing?”; the psychologist and I shot words back and forth like spit fire, I being comfortable and informing, she being able to really take notes and continue to elaborate due to my own comfort and informative action.
“Feed Smaug! I carry you!”
Otherwise known as “pick me up so I can feed Smaug,” she delivered this and threw off my train of thought. The psychologist watched in awe as I lifted all 61 lbs over the fish tank so she could feed the already fed fish (I gave her like two pellets at this point; I started doing yoga again to make this part of my day easier).
I came back to a couple more questions. And then it was game time. And I got scared. Scar doesn’t play with toys. She stacks blocks. She lines crayons up. She gathers things inside buckets or pots (this is especially interesting when she is carrying around a big sauce pot full of Hello Kitty dolls). She takes a puzzle out and does it and then goes back to stacking things. That’s about it besides all of her screens, iPads and Kindles and touchscreen PCs, which lately have lost a lot of their power as well. She does a lot of running about not knowing what to do with herself. I think I was more afraid of how I was going to see her perform and what it was going to make even more real for me.
The last two portions of the testing were where we lost her. She doesn’t understand or take instruction. She didn’t want to repeat the same block towers the psychologist made, she just thought they should be stacked neatly. She didn’t want to put the little boy block on top of the bridge block. In fact, she really liked pairing the two little boy blocks, and the two house blocks, and the two tree blocks. And she really didn’t care what either of us were saying to her.
But it was the first activity which was strictly visual, not much instruction or interaction required. She was asked to match things, cards to pictures in a book. They start out simple enough.
There is a cat on the card. Where is the cat in the book? Good. Then there is an oak tree on the card but an evergreen tree amongst the other pictures in the book, she still matched the trees together. Awesome. Then there is a little boy in a wagon on the card and kids pulling a wagon amongst the pictures. Okay cool, she got it. Thats when things just start to get more and more detailed. The variation of things on the card versus the pictures in the book were more complex. And she was getting them all right. Minute details that I didn’t think she knew. All correct. The psychologist and I should have just helped each other’s jaws up off the floor while we were staring at her. I can’t honestly recount an example now because I think it is lost somewhere in my memory under all of the “holy shit” I was repeating to myself. The woman was laughing out loud with excitement and kept looking at me like “What?!”
She scored about 96% correct and that is just because she had to rethink one or two of her choices, without any help. The psychologist just looked at me when it was over and said that cognitively she is way ahead of her age group. And when the entire test was over, she told me that Scarlett has a lot of red flags and needs special education classes but that she is highly intelligent. The dread of that sentence kicked on quick. That initial shock when this person, who will be making recommendations about Scar’s education, says without question she does not think she belongs in a normal preschool class. My heart cracked again, as it has been and always does when I am pained, especially regarding my child. But when she had finally left, I turned around and just looked at Scar. I just looked at her. Unable to catch my breath for a second and then…
THERE YOU ARE. AND WE ARE GOING TO GET YOU OUT OF THERE.
And with that, the battle for my daughter’s future just got bloodier and all I wanted to do was have the next evaluation THAT MINUTE. I actually went through another quick breakdown of the stages of grief. Within two hours I felt everything and at the end of it still managed to find myself walking the Coney Island boardwalk with Scar for the summer solstice with a big smile on my face. I am only getting stronger.
Today I was on a crusade to find any developmental pediatricians that will take us as soon as possible (though the waits for all of these things are beginning to not surprise me, especially with Medicaid). I plan on making calls tomorrow, to groups, to friends, to friends of friends. Because I SAW HER. I saw what she is capable of underneath all of these external and frightening delays. And to retain all of that and thrive BENEATH her disability.
Well, I met Scarlett yesterday. And she is stronger than me.