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The Mountain of Early Intervention

I was one of those lucky teenagers who had no real problem with acne. I sailed through adolescence with only two or three pimples – so few I can’t even remember them. I do remember, however, friends for whom those teenage years were a nightmare of agony and humiliation and for whom all the hype about youth and romance and young love seemed like some cruel joke. I felt sorry for them. I looked at the blemishes on their faces and wondered how they found the courage to get up out of bed each day.

Then, four weeks ago, out of nowhere, a strange boil appeared on my face. I actually don’t look at my face very carefully in the mirror most days. At 58 years old, I know where everything is, and there are usually no surprises, so I think this little intruder had been there a few days before I even noticed. When I did, it was a shock.

WHAT THE HECK WAS THIS ABOUT? I am long past the age for acne. Naturally, I assumed it would soon disappear.

It didn’t.

Make-up made it worse. Keeping my hand over it was hard to maintain. Also, naturally, at least in my mind, it was all anyone could see when they meet me, although no one would dream of mentioning it. It was certainly all I could think about.

It made me think about disability, the early days, when parents suspect but don’t know.

We talk about early intervention all the time, yet it took me four weeks to ask our staff doctor about such a tiny thing. I was embarrassed; I hoped it would go away; it didn’t seem important. I waited, even as the boil got a little bigger and a little more unsightly.

I convinced myself it was nothing, as so many parents do when they first begin to worry about their child. After all, every parenting blog, every child development expert tells us not to compare children. We are reminded over and over that every child is different and that they all develop at their own speed. So we swallow our worries and try to focus on what’s going well.

Even when we can no longer ignore the things that aren’t going well, there are many reasons to delay diagnosis of a disability. I don’t find it difficult to understand why a parent might wait years to seek advice for a child with a real problem. While many parents just keep hoping it will resolve on its own, others feel vaguely disloyal to their child for seeing a problem at all; still others believe that just naming the problem could make it come true. And, perhaps for all parents, there is the knowledge — spoken or unspoken — that with a diagnosis, life will change forever.

Because disability is more like a mountain than a pimple or growth. It will not disappear and cannot be excised or removed.

In my case, I was referred to a skin specialist. Like all our parents, I went in to see that doctor with dread and hope: dread that it would be cancer; hope that she would have an operation or a magic pill that would make the problem disappear.

The doctor scolded me a bit for waiting so long. It did have to be removed, but it was not cancer. When I returned for my checkup, she said the little scar that remained would have been less noticeable had I come in sooner. While I’m not sure if that’s true, I do think it’s helpful to hear in this scenario. It could always happen again, and if a little fear can propel the patient to seek help early the next time, that’s all to the good.

But telling parents who have finally come in with their child how helpful early intervention would have been? How much better it would have been, if only they had come in months or years ago? Not helpful at all.

If you are that parent who has found the courage to ask for advice, and a doctor or a therapist or even another parent tries to make you feel guilty for waiting, tell them you don’t need help feeling guilty. Tell them you’ve got that covered.

Tell them you know this is a long, long road you have just stepped on to and that all you need from them is strength for the journey.

Tell them you’ve acted now and that now is the only moment that matters. Tell them today is the only day that counts. Tell them that you’re here – now — and you’ve got this child.

Tell them it’s time to get to work.

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