Friday, October 2, 2009

#20 Coping with Uncertainty

I take Jack to his developmental pediatrician every six months. I try to be organized for the meeting, with work samples, copies of IEPs and any evaluations that have been done, etc. I tell him what Jack is doing, what milestones he has reached, what the schools are doing with him, what new difficulties he's having.

But I always leave the appointments feeling like I barely scratched the surface, like I needed to ask more questions (even though I know most of my questions have the same answer: "We don't know"). There's always an uncertainty that leaves me feeling uneasy, as if I should have said more or asked more. But how much could or should you cram into an hour-long meeting?

Basically, I feel like, right now, at this time, everything that can be done for Jack is being done by me, George, Nick, the schools, and the therapists. He's making progress, and it's all good. But I keep looking for the blind spot, whatever it is that I might be missing that I'm not even aware of. The doctor is there to catch my blind spot because he knows more about autism than I ever will, and if he makes no recommendations, is it because there is no blind spot or because I didn't give him enough information to see that blind spot himself? I am, after all, the expert on Jack. I spend more time with him and know him better than Dr. Z ever will.

This last meeting, Jack started feeling confined and needed to step out into the hall. He walked out, blew me a kiss, said, "I love you, Mommy!" and left the door ajar while he "went alien" with his Ben 10 watch in the hall--play that is really more stimming of repeating movie lines and gestures than imaginative play, but whatever. At least it's not just Blue's Clues anymore. Dr. Z commented, "He's a very happy person, isn't he?"

Yes. Yes, he is.

Is my best--and the doctor's--enough? It has to be, I suppose, but I still wonder. Grappling with the unknown is hard work. I wonder if faith and our best effort are enough.

Two things I do know are that Jack is a happy person and that he's making progress. I'm glad Dr. Z sees that for himself in our hour-long visits. Because maybe, just maybe, that is the most important concrete measure of what we're doing. If we were pushing too hard, he wouldn't be happy. If we were not pushing hard enough, he wouldn't be making progress.

How do you cope with this uncertainty? Can uncertainty even be coped with? Some days I say yes, I'm coping quite well, thank you very much. Other days, I'm wandering alone in the forest wondering where the hell I am. I'm starting to think this is normal. What do you think?


Naomi Feigl said...

Hi Susan,
The wandering alone in the forest is completely normal I think....sometimes you feel lost , sometimes comforted by the trees or an unexpected clearing or in my case a kangaroo or echidna.
A "friend" once asked me "Have you done enough?". The answer is always going to be no as its a loaded question we always ask ourselves. I too, always wonder what I've missed, what I've misinterpreted, what I should have done or not done. These questions are always going to be at their worst during evaluations (they feel like exams)
I fellow parent with an older child told my husband we just do the best we can at the time, "we make it up as we go as we've never done it before".
No child comes with an instruction manual, especially ours and each one is unique.
I believe as long as they are happy and making progress, we must be doing something right. We are not perfect as someone once said to me "you should stop being so hard on yourself...give yourself a break". Its just harder at times than others. You are obvously doing a good job , Jack is happy, progressing and clearly loved. What more can we give any child than that?
Love & hugs
Sharon (Stitches on Mars) as I forgot I'm on my DIL's computer

JoLynn said...

Ah! This hits on the reason for my depression! I am (was) a crazy control freak. Comes with teaching, I think. In my career, there really wasn't a classroom combination or situation that I could not handle. Or so I led myself to believe.

With son #1, my Aspie, he had anxiety issues that were the start of me realizing how NOT in control I was. He was, at least, manageable. Then came #2, autism disorder, speech delay, and meltdowns from Hades. Right now, at 4, he still is completely unpredictable. When I was in my control freak phase, this made me absolutely NUTS. Then, finally, I broke and embraced the realization that life would not ever be predictable, so I better just deal with it. Easier said than done. I had to embrace the idea that the best I can do at the time needs to be OK with me. That means if I just don't have it in me to go to an Autism Society function with other kids on the spectrum because I want to escape my reality, then so be it. The old me would have berated myself for missing an opportunity. The new me realizes that there is no way I can be everything to everyone all the time.

Max has made progress with what we have provided. I do not go crazy with diets, medications, etc. I am more a fan of behavior modification, as I subscribe to the idea that autism is genetically passed on, and my kiddos just need to learn to cope as square pegs in a round peg world.