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Saturday, December 8, 2012

It's not a race

If you have spent much time around little kids around age 4 or 5, you are probably familiar with the stage they go through where everything is a race.  You give a couple of them a glass of milk, and you are sure to hear someone say "I won!  I drank it quicker!"  And you are sure to hear yourself saying that classic line "It's not a race!"

That line was in my mind a lot after our meeting with the developmental pediatrician.  The more I think about the things she said, the less I agree with her.  She first tells me how poorly Janey did on the intelligence tests, which was not the problem.  I expected that.  But then her advice, which is all centered around school---more specifically, feeling that Janey is not making the maximum possible "progress" in her current "placement".  Janey is not learning as quickly or as much as she possibly could.  She grudgingly heard what I said---that I was extremely happy with Janey's school, that I would not consider moving her, that I loved the people who worked with Janey---and then went back to saying basically that she was not getting "all she needed"  Janey should have a one-on-one aide, she felt.  She should be in a separate classroom.  She should be being taught intensely.

And I have been thinking ever since then---WHY?  It's not a race.  We know Janey doesn't learn in a typical way.  She doesn't learn in steady lines.  She learns in an unusual way, and she learns slowly.  Janey is not going to college.  She is not going to get a high school diploma.  She is not going to hold a job.  I am fairly at peace with those facts.  And so why in the world would be it even something I'd consider to move her from a school where she is loved, cared for, taught by people who understand her and are interested in her, where she is surrounded by kids who are kind and compassionate and have grown up with Janey, where people know not just Janey but our whole family?  Why?  So she could show a little steeper rise on some chart of progress?

Janey's IEP meeting was a few days ago, and I left it feeling as I usually do after such meetings---extremely happy.  Teary-eyed at being in a room full of people who love Janey, who get her, who are fascinated by her, who see her clearly---not as a statistic, but as a little girl---an unusual little girl, a little girl with behaviors that can sometimes be very tough to deal with but other times can be incredibly touching.  And people who are giving Janey exactly what she needs---not just in terms of love but also in terms of therapy---speech, OT, PT, music therapy and ABA (which they increased, without me asking).  

I've started a book called "Far From The Tree" by Andrew Solomon.  It's a huge book, and I think I'll be writing about it a lot more.  It's about the relationship between parents and children when the children are very different than the parents, by means of having a disability or other difference.  I love it so far.  One early fact related struck me as relevant to my recent thoughts.  It spoke of how fewer than one in ten professionals (which I am taking to mean psychiatrists, pediatricians, etc, and not teachers or therapists, although they are certainly professional also) found meaning in the struggle to raise children with special needs.  Most of them see it as a tragedy---see the lives as a tragedy.  If that is the case, I can see why they would think that even small improvements in the "outcome" would be worth making drastic changes in the child's life.  I'm sure this is not always the case, but I can see that it sometimes is.  

One gift that having Janey gives us is the gift of time, of not having to rush.  With the boys, there are grades to be completed, tests to take for college, deadlines, must learn now subjects.  With Janey, there is her whole life ahead to learn.  She doesn't need to hurry.  She isn't going anyplace soon.  She will be here, with Tony and me, for a long time.  She can take her time.  She can enjoy her life.  It's not a race.


Jess said...

Evan went through that racing stage. Now that I think about it, I haven't had to tell him, "It's not a race" for quite a while now.

It's to bad that these professionals you mentioned see our kids with special needs as tragedies. I suppose that makes logical sense though since they are in the medical field and look at stats on paper first. Am I right about that? Which is why we need teachers and other support to encourage and remind us of what you just reminded me in your writing here.

Sometimes I get disappointed at how quickly Evan seems to be becoming "smarter" than his older sister. But it is what it is. Besides, maybe my definition of "smart" needs to be altered a bit.

grammacello said...

How synchronistic! I just took a break from reading Far From The Tree to see why my computer was making a weird noise and started reading your blog, which I follow more or less regularly.
It is a good book! I was blown away by the excellence of the writing in the first chapter, as well as my interest in the topic(s). I find the middle chapters are really interesting but not gripping in the way the chapter "Son" struck me. My own family has been impacted by schizophrenia-my son died at 18 as a result of this horror- but the whole book is wonderful reading. As is your blog.