Today’s Thoughts on Williams Syndrome

Small Son’s test results came back, and his calcium is elevated.  Once upon a time this happened to us, and he descended into kidney failure because of it.  We’re hoping it can be changed with diet instead of drugs, and I’m keeping a diary of everything that he puts into his mouth.  It isn’t much.

Today he was supposed to go into the hospital for a sedated brain MRI, a renal ultrasound, and more lab work, but he caught a cold so we rescheduled it for next week.  Nerves devour me.  Will we find the answers that we need by looking into his brain? There is this feeling that I get whenever I sit down across from his doctors. It’s cautiously hopeful and laced with terror.  This is how I learned that I narrow my eyes when I’m listening intently.  I try not to do it anymore because the doctors don’t like it.

Small Son’s school is trying to ship him to another school and place him in an autistic classroom there.  He doesn’t have autism.  His doctors and geneticist all agree that this would be detrimental to him.  His father and I feel the same way.  The school still pushes this recommendation, and I spent three hours in a meeting last week listening to their arguments.  Most of them were illogical.  I think it’s all about being right and getting rid of an intricate, challenging child.  I came home and my son kissed my cheek. I want to say, “How does it feel to be six years old and have people be afraid of you?”  Of course I don’t say this.  I usually never say anything.

Santa brought Small Son and Tiny Daughter a pair of Big Wheels for Christmas.  I sit on the back patio and watch them ride around.  Tiny Daughter chatters.  Small Son laughs.  I write everything down in a notebook, because suddenly it occurs to me that I should write about all of this.  It will be a book full of struggles and hope.  I’ll explain that the hardest part isn’t the medicine and therapies or even the hospital visits, but it’s the way that some people treat us.  I’ll explain the strength that I have discovered in humanity.  I’ll tell of the anger that is always right there under the surface, and how today’s cashier is lucky that I can control my temper so well.  I wonder how long I should wait until I write it, or if I should start now.  I believe in happy endings.

16 Comments on “Today’s Thoughts on Williams Syndrome”

  1. Write it now, Sade, before it fades. Small son is amazing and no one can tell his story – or yours – better than you.

  2. Googles Williams Syndrome . . . “tend to demonstrate a love of music . . . appear significantly more likely to possess perfect pitch . . . very endearing personality . . . a unique strength in their expressive language skills . . . extremely polite”

    The school is crazy. Sounds like his departure will be their loss.

  3. I agree with the others…start writing now. I think all parties could only stand to benefit from the experiences of your family.

    Sadly, I’m sure that this is only the beginning with the struggles with the school system. They tend to take the easiest path (for them).

  4. Every cold my son brings home from preschool puts me in that “hope laced with terror” place, since the reactive airway disease has us running to the ER every now and then. And, as my wife’s had conversations like that with my son’s preschool, I understand, good lady, I understand.

    Write as you feel led. Write yourself sane. It works for me (sometimes).

  5. I will say one thing about the pathetic nature of too many teachers these days (and I guess we can thank pathetic, over-protective parents who gave fuel to the PC brigade over the years, but that’s a rant for another day). My brother has a severe learning disability. He’s 30 now…and can barely read. His grammar and spelling skills are atrocious. His social skills are the definition of awkward.

    But he graduated high school.

    He was kept back a few years in elementary school, and rightfully so. But I guess by the time he hit high school, the real “Leave No Child Behind” program was in full swing. Because they pushed him right on through; the fast track to college, without concern that he couldn’t even read his diploma.

    Unfortunately, during these years, my father was a raging alcoholic and my mother was selfishly catatonic to well being of her children. So he had no one. It kills me, you know. I wish someone had been there to fight for him.

    So you need to fight for your son, Merc. But I’m sure you knew that.

  6. I’m struck–STRUCK–by the lines…

    I came home and my son kissed my cheek. I want to say, “How does it feel to be six years old and have people be afraid of you?” Of course I don’t say this. I usually never say anything.

    My thoughts are with you and yours. Brave heart!

  7. If this post was the opening page of a book I’d sit down right then and there and read it to the end. Real life can be more scary, more inspiring than anything make believe. Not only should you write this down, you must.

  8. Who could be afraid of such a sweetheart. Keep fighting. I was reading a book on advocating, and they suggested you record what you see, and even take pictures of his interactions with friends and family. It’s proof he is NOT autistic, and does not need such a classroom. I’m always here to fight with you, just tell me when and where. I can even write letters. You are awesome, and have support, never forget that.

  9. Thanks for all of your comments, everybody. I think that you’re right, and it’s something that I should starting writing now. Rock on, my friends!

  10. Mercedes, write it. Actually, you’ve already started writing it with this post. It is so well done and I wanted to keep reading.

    You know how you say how much you admire my tenacity? Well, I admire yours, blog-friend, I admire yours.

    I sincerely hope all will be well.

Leave a Reply

Your email address will not be published. Required fields are marked *