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WTF Friday: It’s Complicated April 8, 2011

Posted by J. in Domesticity, Genius.
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I’ve mentioned that Dave has issues.  My perfect blue-eyed boy has had significant delays in gross and fine motor skills and has been late to hit all the major milestones that kids are supposed to get to.

I wasn’t surprised.  For example if there’s a time span for reaching a specific milestone in which a kid’s development is considered normal, the girls worked both ends of it.  Mary reached all her milestones early, where Emma waited until the last day minute possible to give it a go.  By the third go-round, I knew enough about parenting to know that he was going to do his own thing too.

Dave was around a year old when the pediatrician realized that he’d missed quite a few windows altogether.  He was evaluated by the Early Childhood Intervention folks and they officially evaluated him as delayed across the board.  Some low muscle tone, lack of development in fine and gross motor skills, and speech.  He started working right away with an Occupational Therapist named Deb who’s been with us now for almost two years.  She comes once a week and does targeted activities with him to help him develop.

At first we focused on gross motor skills, building up his core and getting him up and walking.  It seems like our one short-term goal was “to have Dave up and walking” for the longest time, but eventually and very slowly and gradually he got there.  Then the focus shifted more to his fine motor skills and the new goal was getting him to feed himself and gradually he’s been eventually getting more and more dexterous.  His sole goal now for a long time has been “to have Dave say SOMETHING.”

Dave’s never said a word, or even an approximation of a word.  The thinking all along has been that because speaking is a complicated fine motor skill, once his manual dexterity improved, his vocal abilities would come along as well.  It hasn’t happened.

So at his last checkup, his pediatrician recommended that he see a developmental pediatrician–a specialized specialist.  Yesterday was that day.  And I think I can say with some degree of certainty that it was more stressful for me than for him.

Dave was to be evaluated in great depth by a panel of experts in their respective fields.  The developmental pediatrician, a child psychologist, a speech therapist, and an occupational therapist.  We also had two students observing the process, the director of the therapy services center was there to grease the wheels, and our own Deb was there to put our little man through his paces and be moral support and an advocate for us.

Dave’s part was the easiest.  Deb took him over to another little part of the room and handed him a bunch of toys while they watched him do his thing, each with an eye on their own area of expertise.  The psychologist had him do a few short tests to see how well he can follow commands, and then while he played, the questions started.

Family history.  Do you or your husband have any problems with any of these skills or tasks?  Have your other children ever x, y, or been late doing z?  Did you look into the eyes of a cat while you were pregnant?  When did he do this?  Does he ever do that?  How would you describe this, that, and the other thing?

They asked me a million questions, and then asked ten more for good measure.

Finally, Deb took Dave up to the big play area/therapy room so that they doctors could really watch him do his tricks.  I stayed downstairs and answered still more questions about his current therapies.  And at the end of nearly two hours, they all came back downstairs and while Dave played with the toys, they gave me their evaluation.  Of sorts.

Dave still has significant delays across the board.  (Sound familiar?)  And they’re not a whole lot closer to knowing why, specifically why he’s not made any progress in the speech area.  Acknowledging that his current speech pathologist is one of the best in the state, they’re eager to find out the cause of the delay to see if knowing the cause might help the treatment of it.

Here’s where Dartmouth-Hitchcock Medical Center comes in.  They think Dave needs to see a neurologist and a geneticist.  The good news is that he’s bright and intelligent and his mind seems to gather and process information appropriately.  His receptive language skills are good, and despite not being able to speak, his communicative speech through signing is also okay.  They look, I guess, at whether a kid can understand and execute commands appropriate to his age level, and can he make his own thought, needs, and wants understood.  The psychologist said his language abilities are a strength, so that’s a good thing.

But they both think that his problem may be a neurological one.  His brain knows what it needs to do, but his body doesn’t get the message.  And I guess there must be some neurological disorders that can cause that gap.  And they might be genetic.  Oh, and while you’re up there, we want his hearing checked by pediatric audiologists who work specifically with kids like Dave, and the same goes for a pediatric opthamologist, just to make sure he can see perfectly.  Not that they think either is a contributing factor, it’s more of a ruling-out thing.  Same with the barium swallow test they want to do as well to make sure that structurally he’s sound in the vocal apparatus.

So we’re looking at a day of blood work and questions and more tests, and God knows what up in Hanover. I can’t imagine any parent takes “we want to run a bunch of tests on your two-year-old” in great stride.  It’s jarring.  Not in any dramatic, oh-my-God-I’m-so-distraught kind of way because that’s just not how I roll.  Just a feeling inside that is less-than-peaceful because something is a little off.  Not quite right.  Unsettled.

As I sat in the car and tried to process the information, wondering what neurological disorder my boy could have and what does this mean for his future, the only thing I could do was be grateful that we’re not traveling to Dartmouth to see a pediatric oncologist.  I was relieved that we’re looking for the reason why he is delayed in speaking and not why he used to speak and has suddenly stopped, or why he’s uncoordinated and not why he can no longer walk.  It could be so much worse, and I’m grateful it’s not.

But the fear of the unknown is still in the back of my head.  A specialists’ specialist thinks something’s not stirring the Kool-Aid.  Is it fixable?  What does it mean?  Is he going to catch up eventually and someday we’ll never know he had these delays, or is he going to be Stephen Hawking?  And should we have done all this sooner?  Should we have been more aggressive in looking for the cause a year ago instead of hoping he’d show some progress eventually?

It’s complicated.

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Comments»

1. knitorious drivel - April 8, 2011

No easy answers, that’s for certain. Of one thing I’m sure – you shouldn’t second-guess your timeline. My thoughts and prayers for the answers you need.

2. bezzie - April 8, 2011

I feel for you. We had to have Chunky evaluated by a geneticist for a “deformity” when he was an infant. That’s why I laughed out loud at the “Did you ever stare into the eyes of a cat when pregnant?” question. So true!
One thing I learned is by covering their asses in every imaginable way, they manage to stress you out as a parent. Once the foam is no longer frothy, I get the feeling all will be well with Dave and you’ll be able to tell him this story when HE has kids.

3. Lisa - April 8, 2011

Oh Jen, when it comes to our kids, you’re right. Just stressful. They are happy as can be… we on the other hand are a mess. You shouldn’t second-guess yourself. Especially where Emma did things in her own good time… how could you know. And maybe they will just find he is doing things in his own good time as well (with a big f-you attached 🙂 Kids are funny, they do that! Dartmouth is the place to be! if there is anything they need to do for him, they will be sure it gets done. Was the eyes of the cat you looked into yellow or black? Does make a difference! 🙂 At this point, just don’t let him know your nervous, then he will get upset. Probably the hardest part…

4. Yorkie - April 8, 2011

Bezzie, as ever, is right. These tests are to rule out more things than they are to rule in. And they are to cover their arses…sad but true. When you come away from all this cross-examination, you can’t help but feel it’s some failing of your own, something you should have done more of or sooner or better, but it’s not, and I hope NONE of the docs copped that attitude with you. It is mentally churning to look at your child and see them as a pile of Things That Aren’t Right than a perfectly miraculous little one. Love can still go a very, very long way.

I’m sorry the tests were so gruelling and that they’ll probably keep you up tonight with worry. It WILL get better because it has to. *hugs*

5. Aimz - April 8, 2011

I work in Cornish. If you need me to drive the extra 20 minutes I will.

6. elizabeth M. - April 12, 2011

Take heart. Colin wasn’t speaking at all at age 2, either. We could see that he had the receptive language working, but not the expressive. Now, we can’t shut him up. I’m not saying that things will resolve as effortlessly for Dave (though I hope they will), but just to try not to get ahead of yourself in the worry department. Easy to say and hard to do.


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