Monday, September 12, 2011

And It Begins Again. . .

How did this blog turn into a blog about special education and evaluations?  David has made a noise - sort of repeating the last sound a word makes - for months now.  Probably six months or so.  We've just sort of ignored it.  No, not because we're not attentive parents.  Because he has Tourette's syndrome, and vocal tics come and go.  Some (ie: throat clearing) are like old friends; they've been around for so long we almost don't notice them.  Some (ie: repeating the last sound) are difficult to ignore.  It's generally only consonant sounds and I can't recall him doing it with a vowel sound.  

This weekend we were driving, and it was like a light went off in my head.  I looked at Chris and said, "Do you think speech would help with that?"  If your child has never gone to speech therapy, that may seem like an odd question.  However, speech isn't just about learning to talk - it's about speech patterns and different ways of doing things.  It can be, in a sense, retraining your mind/mouth connection to work properly.  That was David's issue with apraxia of speech, and I think may be his issue now.  I have done some research (always dangerous, and never preferred by his actual physicians) and think what he's doing is either a complex vocal tic or a "habit" (for lack of a better word) common to autistic children.  Great - we've won the special needs lottery on that one and it could apply to David for both of those reasons.  My hope is that it's not a more complex vocal tic, because that would be indicative of his Tourette's progressing, which is not what I want at 7 years old.  

If I have any advice for parents (not that I am in any position at all to give advice) it would be to trust yourself.  If you think there is something concerning about your child, you are probably right.  Of course there are extreme parents who think when their child coughs he has TB.  If you are a normal parent you don't do this.  I called David's pediatric neurologist today, just to run this situation by the doctor.  Of course I can't actually talk to him.  I could easier talk to the Wizard of Oz.  I left a message for his nurse, and on my message I stated, "My son David is seven and has Tourette's.  He has what we presume to be a vocal tic, and I wanted to discuss speech therapy as a possible treatment."  The nurse called back and asked how long he had been doing it, etc.  I told her that it had been about six months but that we thought, like some of the tics he has had, it would go away.  The nurse then said, "Oh, he's had other tics?  Does Dr. V. know that?"  Silence. . . I said, "Well, he has Tourette's syndrome, so yes, he's had other tics."  She then said, "Oh he has Tourette's?  Does Dr. V. know that?"  Crickets. . . "Um, yes.  Dr. V. is the physician who diagnosed him. . . "  REALLY?   I don't expect her to remember us by name, because I completely realize that he sees a ton of patients.  (Although I wouldn't be surprised if she remembers me by name because I *may or may not* have called the patient care coordinator and the vice president of the medical clinic when it took me FIVE MONTHS to get a copy of my child's diagnosis.  Five months.  Unacceptable, and that was made clear.)  I do not, however, think it's too much to ask for her to glance at David's file in the computer and see what we see the doctor for before calling to answer a question.  Needless to say, I really didn't care what her thought was on speech therapy - we will do what we think is best for D.  It's disappointing to me that every time I get off the phone with that office I think that I won't take D. back there.  If I didn't love his doctor so much, I wouldn't.  He really needs to fire his entire staff and start over.  You know, if you're asking my opinion. . . 

So, in a sense, I feel like we've come full circle with my sweet little D.  We started our journey to special needs with speech therapy, and back at speech we've landed.  We will have him evaluated through the school system to begin with.  I emailed the special ed teacher today to get this rolling.  I fully expect that evaluation to say that there's a problem but that it's not severe enough to warrant treatment through the school.  In fact, if it comes back any other way I'll be shocked.  My preference would certainly be to get services through school because just logistically it will be the easiest.  However, I fully anticipate we'll have to pursue this privately.  I'll have to start looking at our insurance coverage, because that will largely determine where he goes.  His OT is out of network, and I'm willing to pay that because she's incredible.   I won't be willing to do that for speech because there are far more options.  I guess we'll cross that bridge when we come to it.

On a good note, I touched base with his teacher today, and she said that she's very pleased with how he's doing in school.  He is making friends and working well in a group, both of which can be a challenge for him.  I'm so pleased we've put him in this school, because it's a great fit!

1 comment:

Keri said...

Getting help for our children should NOT be that difficult! Good luck to you and always trust your gut!