Andi Sligh

Life doesn't have to be perfect to be wonderful.

What Not to Do

By

Twice this week I’m going to be doing The Thing You’re Never Supposed to Do if you’re a parent of children with special needs.  I blew off Sarah Kate’s IEP meeting at the school, and then I blew off Nathan’s meeting with his service coordinator for Early Intervention.  Okay, maybe “blew off” is too strong of a term, but the bottom line is that both of these events were scheduled for this week and I won’t participate in either one of them.  In Sarah Kate’s case, the meeting was being held because she had met her adaptive p.e. goal for the year and needed a new goal.  The adaptive p.e. teacher made a recommendation, the special education coordinator called me to ask my opinion, I said “Sure!  Sounds good!” and signed a bunch of paperwork saying I knew they were having a meeting and I wasn’t coming.  As for Nathan, today was to be his six-month review (delayed by two months because of being rescheduled twice before).  He hasn’t shown any developmental delays thus far, so when the service coordinator called, we agreed that it was silly for her to come out to the house just so she could write “continue to monitor progress” on a piece of paper.

I’ve heard horror stories about parents who’ve had to fight tooth and nail for what their children need, and I can attest to the fact that even if your children get what they’re supposed to get, it’s not enough.  Sarah Kate has spent many hours in therapy over the past eight years, and the majority of it has been private therapy, paid for by our insurance or (in many cases) out-of-pocket.  We’ve been fortunate in that she has only needed physical therapy, not occupational or speech.  Nathan’s needs are still a big unknown – we know he’ll need something, but we just don’t know yet what, how much, or when.  I believe that both of the phone calls I got this week were from sincere individuals who truly do think that it was silly to jump through a bunch of bureaucratic hoops for something very simple, but of course there’s always that possibility that we will at some point have to deal with people who are difficult and don’t have our childrens’ best interests in mind (it’s even more likely now, when federal, state, and local budgets are tight).
Yesterday, I was holding Nathan’s hands in an effort to help him “walk” to Daddy – or at least to see if he would weight-shift like he needs to do before learning to walk.  As I held his little hands and leaned from side to side, mentally willing him to move his legs, I felt angry.  Nathan’s first ten months on earth have been a lot of fun for Mr. Andi and me because he is able to do so much more than Sarah Kate was able to do at that age, and because we haven’t had to worry that he could catch a simple virus and wind up hospitalized (or worse).  Still, I can’t help but feel that some of the Baby Joy has been stolen from me; I spend every minute that I play with Nathan processing in mind “Is this age appropriate?  Should he be doing that already?  Do I need to be working with him on X?”  It’s enough to drive a person crazy.
As I tried to guide my super-limber little guy, I looked up at Mr. Andi and said to him, without even thinking, “Do you ever want to just let them be who they are, whatever that is, and forget about all of this therapy?”  To which Mr. Andi, without hesitation, answered, “Yes.”
Super-limber boy watches not-limber-at-all girl at PT

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Comments

  1. Chris says

    Andi – I so look forward to reading your blog about your adorable little kiddos. I loved meeting Nathan during Marathon Weekend and was so happy I was able see that gorgeous smile in person. You and Mr. Andi are wonderful parents to some wonderful children and they are especially lucky to have you both as parents. The last paragraph in your current blog is a perfect example.

  2. Shasta says

    Hi Andi!

    It's good to semi-interact with you too! Since blogs don't have Facebook-like walls, I just sort of comment wherever I land. I love this post. I also wonder what life would be like if we just let them be who they are. But then, since I haven't had any other kids, I literally don't know how I would play with them in a way that isn't "therapeutic"! Therapy has become our play… which is sad but in some ways it's good. It's just how we live our life now, instead of "From 10 a.m. to 11 a.m.: Therapy."

  3. Andi says

    I can SO relate (obviously, since you are agreeing with what I already said!) I used to beat myself up about not doing this or that with Sarah Kate, but I'm much more laid back about things now. There aren't enough hours in the day to do what it would take to make my kids "typical" so I just do the best I can, hope they're happy, and keep my sanity!

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