Friday, June 3, 2011

Big Bad Wolf: Misunderstood?

We went to the Developmental pediatrician yesterday for our appointment for Jonathan. Jonathan has been being seen by a developmental pediatrician because he has language, gross motor, fine motor and cognitive delays in his development.  Last summer we did some genetic testing and discovered he has a deletion on the 21st chromosome.  This is so rare, that every time someone gets discovered to have this, all our information about symptoms, development, etc. gets put into a world wide database..
The visit went rather well and it seems that medication for Jonathan's hyper-ness  is working although we just reached a level. Could it be dialed in a little better? Yes, and it will as soon as our move to Euless is completed, and we get us a new pediatrician.

The pediatrician we see only sees kids with developmental or behavior issues. 
I am very glad we got to see the developmental pediatrician.
When I was told by the genetics doctor that we needed to see this guy, my gut reaction was that he was the big bad wolf.
This was the LAST thing I wanted for my child. I didn't need another professional or another human being for that matter, pointing at my child and putting another label on him.
Jonathan is five years old, and has had quite a life of doctors and specialists...I'd prefer at this point to try and limit the trauma from the medical community. He gets traumatized by all the poking and really HATES blood work.
I went on a facebook page a couple of my friends had been on.  It's called Shut up About Your Perfect Kid. It's a community of people who are either parents of special kids or someone who works with them or just loves one.
This page is actually created by the authors of a book of the same name.  Although I haven't read this book yet (shrugs and hangs my head in shame) and I will... Trust me it's in my amazon shopping cart right now.
I went there with questions, and got not only an answer, but also a ton of encouragement and support.
Someone suggested that I take my son to see what they said and not to worry, these aren't finger pointers.

I was really pregnant at the time with Sarah and had just spent a week in the hospital in November. I drove slightly outside the 40 minute circle of late pregnancy. I actually drove 40 miles.
I was not really sure what to expect other than feeling like I had completed  an application to the ministry school I graduated from AGAIN. There were so many steps in getting him seen there, that made completing mortgage paperwork seem like it was EASY.
When we came to the appointment and finally met the doctor I was so shocked. He was so easy to talk to just because of his manner and not just because he looked like a friend of ours named Brooks.
 He answered every question I had, that he could answer. Gave me names of books I could read, and educated me on Individual Education Plans (or more commonly know as an IEP).
He was NOT the Big Bad Wolf that I thought he would be. In fact he became more of a coach, a teacher, and a cheer leader.
Which leads me to ask: What things are you afraid of?
When you really look that unknown thing down, is it realistic to be afraid of it or we just afraid of too much?
Just as a matter of fact, there are real things that we should be afraid of;just to keep us safe.I am not trying to reduce that reality, at all. 
I just checked off another thing I was afraid of off our list and it's an exciting experience.

Be Blessed and go conquer your giants!

1 comment:

  1. How are things going?
    This is one of the blogs I enjoy reading when you update it.
    You have a wonderful writing and love reading about your family.

    ReplyDelete

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