Are you someone who works in the school district? Any school district anywhere? Do you help place special needs children in appropriate classrooms and work on getting them the help that they need? Are you a special education teacher or therapist or psychologist in the school system that deals with children like mine? Have you sat in on transition meetings with parents who need to send their special needs child to school for the very first time? Have any of them cried in that transition meeting, like I did today? Well...if any of the above descriptions fit you - I'd like to tell you a little story. It may help explain me...and the hundreds of thousands of other Moms (or Dads!) like me. Sit back, relax...
The day Gavin was born started off as the happiest day of my life. The C-Section was fast and furious only because my blood pressure went sky high and he had to be delivered immediately. There was no reason to believe that Gavin had any issues. But then came the silence. Never a good sign. Gavin needed assistance breathing and was whisked away to the NICU.
It was there that we lived for thirty days. The first two weeks I must have yelled at Ed a hundred times to and from the hospital - WATCH THE BUMPS! - as I held my C-Section incision. Nothing would keep us from seeing Gavin and spending our day learning everything we could about his medical needs. We tried hard to just be present for Gavin - creating a homey atmosphere, bringing in clothes that were his (even though he was swimming in them) and toys and taking as many photos as we could.
We brought him home and just that quickly we were back at the hospital...where we learned he had RSV, Botulism, and permanent, sensorineural hearing loss. I lived next to his crib for the next eight weeks in that hospital...pumping breast milk that he could barely eat. He was so, so sick...practically paralyzed. There were times it was touch and go.
I brought in the crib mobile, blankets, rattles and stuffed toys. All baby shower gift that I was determined he would enjoy - wherever he was.
We brought him home...again...for good. Thank God. We learned more than we ever wanted to know about managing hearing aids...
...managing feeding tubes and pumps...
...working with him an hour a day with vision exercises while we patched his weak eye after he was diagnosed with Ptosis and Amblyopia.
Watch the following video to get just a glimpse of what he went through in his first year alone. More than most would go through in a lifetime, that's for sure:
Gavin and I have been through it all together. Hospitalizations...colic...aspiration issues where he'd often turn blue and need me to suction his airway...therapies...doctor visits...sleep issues...nebulizers...feeding issues...I could go on and on and on. The point being - we have a very tight, very special, unbreakable bond. I'm sure that's easy to understand.
So today, as I sat in your office and told you my hopes and dreams for Gavin's education, I got choked up. When you told me that I could, indeed, keep him home and in the "pre-school program" for another year - just exactly like he is now - I was relieved. When we talked more about him attending Kindergarten with a one on one aide that would be hired by the school district, I got teary again. I'm sure you must have thought I was one of those...what are they called? A helicopter Mom.
Well, I suppose I am.
When you've been through as much as I have with my first born child - it is hard to let go. I know every inch of him from his head to his cute little toes. I can anticipate his physical movements before they happen. When I am stressed - he is stressed. When he is hurting - I hurt, too. I know just the right song to get him to focus. I have the same relationship with Gavin's brother. But there's a difference.
Gavin can't walk. Gavin can't talk. Gavin is more vulnerable. The thought of sending this sweet, vulnerable child out into the world without me...
...well, it's just hard to take.
Every day I hear or read about people doing unspeakable things to children. It's a little known fact, but I was one of those children once. A music teacher - I was only 12. So I'm overly cautious. Overprotective. If Gavin is in school - or on a bus - or with a personal aide hired by the school district, I don't feel any less cautious. I feel worse. Gavin can't talk. He can't run. Do you see what I'm saying? It may sound extreme - but if, like me, you once met a wolf in sheep's clothing then you'd understand.
Why am I telling you all of this? I guess because I want all of you to know that every special needs child...and every special needs child's parent...has a story. They aren't just a case number...or a last name on a file. They are people with real fears and real anxiety and hopes and dreams for the future. They hope and pray that they meet up with administrators and therapists and teachers and school districts that will see them. I mean really see them. That will take the time to get to know them. And maybe, just maybe, share the dream that the family has for their child. And if they act a little wacky...a little 'helicopter-y'...a little overprotective - it's likely that they have traveled such a long and heart wrenching journey with this child. It's hard to just turn that off as we turn them over to you.
What am I going to do about Gavin and this school thing I'm facing? Well, I haven't quite decided yet. In the meantime, we'll continue to dance our way through our happy life at home. And I'll continue to marvel at this little boy who has defied so many odds - and has overcome so many obstacles.
Thank you, so much, for your time.
The Superhero's Mom