24 April 2014

A Special Needs Mama's Emotional Difficulties

When Abigail was around a year old, we went to visit a developmental/behavioral psychologist for an evaluation (it was free as part of a study we participated in). After she evaluated Abigail, she drew out a little chart. She drew a Y-axis running down the page on the left hand-side. Then she drew a series of lines running from left to right across page and told me they were IQ lines. She labeled each line. The "genius" line, the "average" line, the "delayed" line. Then she drew the "retarded" line. Below that line, she drew another line. She shaded in the space between the "retarded" line and the line below it. "This is where people with Down syndrome typically range." She told me. Then she drew a squiggly line that stayed mostly in the shaded area of the graph, but peaked up to break the "retarded" ceiling. "This is where Abigail is," she told me.

I hear a lot that Abigail is a rock star. From two psychologists, almost every therapist we've ever seen. I hear over and over again from people that Abigail is one of the highest functioning children with Down syndrome they've ever seen.

But statements like that are really confusing for me. Because when I go to a playdate and plop Abigail down in a room full of kids, she doesn't act like the other kids. Even if her disability wasn't obvious by looking at her almond-shaped eyes, you'd still be able to tell she was "different." It took me a long time to realize that "incredibly high functioning" for someone with Down syndrome is still "low functioning" compared to the national average.

It was difficult for me to hear and process my daughter's squiggly IQ line intertwined with that stupid "retarded" line, but eventually it made life easier. So many people were telling me how amazing Abigail was doing that I expected her to act just like every other kid her age, but she wasn't. It's like when all your family and friends tell you that you are an amazing singer, but then you stand up on the stage in front of strangers and belt out a tune and everyone boos. Knowing the statistical facts helped me to put some context around the rock star statements. Abigail is really high functioning in our little world, just like you could be the best singer in your family, but still not be very good on the world's stage.

I say often but explain seldom, how difficult it is for me to navigate this world of "developmental progress." I can't separate the changes in my life of having a kid from having a kid with special needs. It's like most kids are automatic cars and mine is a manual. You probably just turned around one day to discover you child sitting up or pulling up to a stand or toddling across the living room. My child only did those things after months and months and months of work. The first time she did all three of those things it was during therapy (either with the therapist or with me). I'd be lying if I said part of me wasn't excited about having another kid just because I want to see what an automatic drives like.

Sometimes we do things way behind the curve because I had no idea we were suppose to be progressing. When Abigail's physical therapist found out I was still holding her bottle for her at 10 months old, she was shocked. But it wasn't Abigail's fault - within an hour, she had Abigail holding her own bottle. I had no idea "holding her own bottle" was a goal we needed to pursue. But other times, I am pushing her way fast. Abigail actually started looking at words in books from left to right and top to bottom way ahead of the average kid because I stressed books more than the average kid's parents.

I get comfortable with the way things are going inside these four walls - Abigail's skills become my normal - and when we first started venturing outside to engage other young children, I was devastated by the differences I saw.

It took me a long time to heal from the devastation. It's something I've outlined extensively on this blog and also something I talk about in my manuscript (update on that coming next week).

The older Abigail gets, the more dramatic the differences become, but at the same time, the more she is becoming a rock star. For example, if you count her signs, Abigail's speech is not delayed. She has as many words/signs as the average kid does words and she is combining words/signs into sentences at the same rate as the average kid. When I observe other two-year-olds, they do the same things with words that Abigail does with signs. No delays. In other areas, Abigail is in a "typical delay pattern," which means that she is slightly delayed, but only as much as you'd expect the average kid might who is a bit late. Like in the self-help category (the extent to which she can dress herself and help with her own hygiene). Of course there are still places she's delayed - like how she holds a pencil - and places she's really delayed - like how she doesn't use tools in play or how she still can't do stairs. While the pain of watching my child fail next to someone younger than her will never stop hurting, the older she gets, the easier it becomes for me to deal with the pain without getting depressed.

A lot of these thoughts are bubbling up because we've got a big meeting coming up soon when we'll sit down with all Abigail's therapists, the school psychologist, the special education director, and the special education teacher Abigail will have next year. Part of the meeting will include the therapists all going around in a circle and telling me at what age Abigail is functioning in each testable category. They say things like, "Oh, in her physical development, Abigail is functioning at a age of an X-month-old." Pardon my French here, but these meetings fucking suck. I fucking hate them. I don't see how knowing my three-year-old acts more like a two-year-old (or where ever she'll fall) can help me parent her any better.


So I'll structure the day with lots of healing activities. First I'll vent to Matt. Then I'll take Abigail out for ice cream. Then we'll go home and I'll spend lots of quality time with Abigail to reinforce with my actions my beliefs that she as a person is far more than what she scores on a test. Then, after she goes to bed, I'll write. And cry. And feel my feelings. And when I close the computer, I'll let the feelings go. I'll say some prayers and go to sleep.

The worst part about Down syndrome is that it puts Abigail's health in jeopardy. The second worst part about Down syndrome is the way the world reacts to it.

1 comment:

Cam Wollner said...

Do you know when I woke up this morning I was hoping you would have a post today?

And I love this one. It captures so perfectly what so many special needs parents experience. I don't love how hard it can be, especially getting the results in those types of meetings (they keep telling me Mae is consistently 16-18 months old at almost 4), but oh the wonderful moments that do occur in our own little bubbles of achievement sometimes feel so much sweeter because of it. I mean, most parents totally wouldn't be beaming all day if their three year old put three words together for the first time in weeks, but I'm on cloud nine when it happens!

And I can definitely attest to the fact that having a "normal" little kid next makes those milestones more amazing to me too. I haven't talked about it really at all on my blog yet, but we're going through testing with Sadie now and the neuro people are thinking she was mostly deaf until she was 18 months-ish (so her speech was seriously delayed too). So watching Patch say words at 16 months just has me in awe daily. And I don't think it would be the same if we hadn't gone through the difficulties along the way.

And I need to email you! I've been meaning to email you for every day for at least a month or two now! These months are just slipping by too quickly!