Tuesday, May 4, 2010

I Just Know

On Friday just before leaving to go to Charleston, SC and Patriot's Point for the weekend, we received the call we've been waiting on since August -- the call from the Autism/Asperger's specialists to whom our pediatrician referred our daughter at her four year well visit.

Actually, to say that we've been waiting is a little misleading. They had told us there was a lengthy wait, but 9 months seems a little excessive to me. If we had been desperately seeking help I think we would have sought help elsewhere by now. Or given up.

But what's actually happened is that we sort of forgot about it. Oh, now and then it would cross my mind and I'd wonder if they lost our paperwork or if they were ever going to call. But I wasn't really worried about it because in the last 9 months a lot of things have changed and I no longer feel that we need to see them.

I'm going to try to say what I'm about to say very delicately in the hopes that I don't piss anybody off. I don't think that every child who is "quirky" or "has issues" has autism and/or aspergers. DON'T GET ME WRONG -- I'm not saying that they don't exist. They do.

And believe me, I don't think I'm blinding myself to the truth about my child. She has issues, yes. She's shy, for sure. Impulsive, yes. Immature, most definitely. But I honestly believe that most of her issues stem from her strong will and her immaturity.

However, in the last 9 months we have seen huge improvements in Punkin's behavior. She's so much more social than she used to be. She actually makes friendly overtures to other children now. In the past this would have been unheard of. She doesn't have the "transition freakouts" she used to have.

I was emailing with my new internet friend Jodifur the other day. I had just found her blog and she seemed to be dealing with some similar behavior issues with her son that we had with Punkin. In the course of our "conversation" I mentioned that we probably weren't going to take our referral appointment if or when the specialist ever called and she asked me why. And I couldn't really articulate my reasons other than to say that I didn't think we needed it. And then she asked me about the services we might qualify for if we took the appointment, a fair question, though I was a little ignorant of just exactly what those services might be.

But I've been thinking about her questions ever since and I'm going to be gut-bustingly honest in my answer. We live in a small, very rural county without a lot of money in the school system (though the teachers we've had so far have been awesome). I've been in the school where she'll be next year. And the majority of the students who receive services are students with very different needs than any that Punkin might have. And frankly, I worry that the label she will have applied to her at the age of 4 might do her more harm in the long run than any benefit she might receive. Is that ignorant of me? I don't think so.

Because the other reason we won't take this appointment? My gut. My gut tells me that Asperger's is not Punkin's problem. Our pediatrician based his recommendation after seeing Punkin a total of approximately 15 times in her 4 years (including sick and well visits), never for more than 15 minutes at a time. While I trust his judgement, I don't necessarily think he gets the real Punkin. To be honest, I think at the time I wanted her to be diagnosed with something because I was at the end of my rope and I didn't know what to do about her anymore and a diagnosis would mean some sort of treatment, something, that might bring us some relief, so I think I unconsciously played up the "problems" to some degree. In our case, it turns out that all we needed was time.

I've consulted with the other people in Punkin's life -- her teachers, etc. -- to get their opinions as well and I'm happy to say that they agree with me.

So, no, we won't be taking that appointment. And that just makes room for an appointment with someone who really needs it.


Amy Munnell said...

I think Punkin's pre-k teacher & curriculum program have helped tremendously too. She's an adorable little girl, except sometimes for pictures. :-)

CassJustCurious said...

This is a sensitive topic. I want to share with you the perspective of a friend of mine. He had trouble learning, he was always introverted, lashed out with behavioral problems. His family wouldn't have him evaluated - they didn't want to deal with the stigma on them. And they didn't want to label him because THEY had issues with that based on a family member that was labelled and then put away.

When he was 13 he finally sought help. It was determined that he had a learning disorder - his misunderstanding as a child led him to think that he was stupid, that led to problem behavior, it was why he didn't reach out to others because he was afraid they'd figure out that he wasn't smart.

In short. It hurt him. It took him a really long time to move past all of this.

So, while I can understand you're assessment that a doctor that hasn't spent any TRUE time with Punkin - couldn't be able to identify a diagnosis (if there is one) but I would ask why not take advantage of a health professional that would be willing to take the time...because maybe you'll get confirmation that you're right. Or maybe you'll get an opportunity to steer the course a bit and be more equipped to help her.

As a friend I support you in your decisions as a parent and respect that YOU will always know and do best for your child. So please don't take this as a judgement in any way because its not - but it is another perspective.

Katie said...

I've been crazy busy for a few days and came back to find a missed a weighty post - sorry!

I think I would have taken the appointment just because I would have been curious. There's a good chance the doctor would have said, "Nah, you have nothing to worry about" when all was said and done - and then you wouldn't have to wonder if anything else ever did come up. And if they did find something - it's just information, it doesn't mean you have to do anything with it.

BUT, that is what *I* would have done. *YOU* are Punkin's mama and I think that you absolutely did the right thing for your family because you are the one who is there and you know her and the situation better than anyone.

So I think you did the right thing and I LOVE the point you made at the end - some other mama out there is thank goodness-ing that an appointment opened up!

Burgh Baby said...

Ditto Cass and Katie. :-)

We went through something altogether different (but kinda the same) with Alexis. One doctor heard a heart murmur when she was 3 weeks old, but then another doctor didn't hear it. We were all pretty sure it was probably nothing and just the result of the high fever she was rocking. But, we still took her for a full evaluation just in case. It was nice to hear from someone who was 100% focused on that particular issue that it really was nothing to worry about. If it had been something to worry about, finding out the hard way years later would have been absolutely awful for me and for Alexis. It may have been a waste of money and resources, but that peace of mind is priceless.

BUT, you have to do what makes you comfortable. That's what it comes down to.

Aunt Crazy said...

Only you know what's right for your baby. Only you are qualified to make these heavy decisions.

It's hard for others because we tend to think in terms of what we would do, not in terms of what each person would do in their own very unique situation. Personally, I would have had the evaluation, but I tend to lean towards overdoing things like this because I worry that if I don't then maybe I was jading myself into thinking there was nothing going on, so I want someone else to assure me that everything is fine and on the other hand, if something, anything needs to be done, then I have a professional ready to show me the way.

Leslie said...

It sounds like you made an informed decision based on changes that you've seen and feedback you've gotten from her teachers, and that's the best that you can do. I really think that there is something to be said about a mother's gut instinct, too. And, in the future, if you want to revisit this issue, there's no reason that you can't. Punkin is a fabulous little lady and I can't wait to see what happens with her next!