Wednesday, June 30, 2010

The Wonder Years

Even though Nurse Tracy has already spent the last six months or so working with Ben she's still learning and hearing about our son's first ten years with us. It's quite interesting to tell a person who spends so much time with your kid just how dramatic things have been at times. It's also kind of depressing when you recall decisions that were made that in the long run weren't very beneficial for him. Thankfully most of the time Ben's "team" has made the right choice.

Being the parent of someone like Ben is obviously difficult. Unlike typical family situations there are no parenting books, no medical growth charts, no checklists, no college courses, no school tests (actually those do exist and are an absolute waste of time, money, and paperwork), no absolutes to help you build a road map for the course of your offspring's life. Instead we generally shoot from the hip hoping to be quicker on the draw than our "enemy" whether it be an illness, an under-funded state program, or some bureaucratic asshole whose impeding the health and well-being of your child. In the mean time you hope and pray you don't miss and hit an innocent bystander or even worse: yourself, your son or daughter, or another family member.

Because I've neglected the blog for about the same length of time that Tracy has been with us most of you are unaware of just how well Ben is doing. Now that he is not in school Tracy has been letting Ben paint nearly every day. In discussions with his physical and occupational therapists the effort has definitely paid off! Tuesday is always therapy day. It's not just penciled in but written in Sharpie pen ink on each Tuesday until he returns to school. That is how much we value the work that he does with all of those wonderful individuals that have worked with our son through the years.

Ben is now able to work (very slowly) with a communication device, pointing to "yes and no answers" for the most part. This is mainly due to his artistic interest and the wonderful gift of another blogger, Casey of Moosh in Indy fame (Casey, I really really really want you to know what a wonderful thing you did for Ben - that Touch Screen has been a HUGE educational tool for him...HUGE!!!!). In fact his speech therapist was absolutely amazed this week to discover that Ben actually has a vocabulary that consists of the word "conversation." It is another long story to relate but very typical of the who, what, and why of living with Ben.

Getting back to those early years that I've been telling Tracy about, we certainly are enjoying the boy we have now versus the boy we had then. It's not that we ever loved him any less it's just that he can finally tell us how much he loves us.

4 comments:

moosh in indy. said...

That picture just puddled my heart on the floor.

I'm so glad the computer went to exactly who it was supposed to go to. That was such a lovely feeling, being so stressed about the giveaway, then your entry came in and my mind just said "Of COURSE it's for Ben."

Nurse Betty L. Boop said...

We're also doing therapies on Tuesdays, and working with a communication device. 10 must be the magical age for these great guys!!

Kyla said...

I'm so glad he's thriving!

neeroc said...

Oh my goodness I love that picture!

So very uplifting to hear of his progress.