On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Wednesday, July 7, 2010

Owning it

Day two of day camp for Sissy, WG is at Grandma's in the country (really, that's what they call her: grandma in the country) and it was just me and AB back to to the "brace place". AB got his fifth pair of ankle-foot orthotics (AFOs) to help deter his toe-walking.

AB's developmental specialist has gone to bat for us, waging war with insurance that would really rather not cough up the $1800 annually for the fitting, new orthoses, socks and shoes. But she has seen patients into adulthood and has been increasingly alarmed and discouraged by the arthritis in the knees, hips and backs of the toe-walkers that didn't stay in orthotics. Not to mention the fact that it would take AB all of twelve months of toe walking before it would begin to shorten his hamstrings and calf muscles to the extent of needing interventions. Serious interventions. Read: surgery.

Thus, as the prescription said, "AFOs articulating plus shoes for prevention, not correction" because the truth is, AB will always toe walk. It's not a CP issue, it's an autistic thing.

AB was excited which means he was all over the map, mood and attention wise. He tends to talk faster with more speech impairments, move quickly and do odd behaviors that he wouldn't do normally (he began loudly demanding that I purchase a colored pencil like the one the tech used to mark the AFOs for sanding). As he was doing his crazy I'm excited, freaked and worried all at once thing, I thought to myself GOSH! He's a lot of work! and then WHAM. It hit me. I took him without Sissy or WG and I was still saying he was work.

I let my mind run with it and I began to realize just how much work Sissy is. She's a lot of work. I didn't know how much she was stealing from me until she wasn't taking it.

She takes a lot.

Oh, and I still have AB, who is tough all by himself.

And WG who just wants to be a normal kid.

Right. It's helpful to stand back and get a clear idea of what I do everyday, to evaluate the situation, sum it up and ACKNOWLEDGE that it's a butt load of work. Own it. Wear it. Digest it. Admit it. Sissy steals from me because she doesn't return anything valuable in the parent-child relationship. AB takes from me because he needs so much. WG replaces a lot of it because it's who she is and since she's not here, I'm realizing just how much she contributes. She's pretty amazing and I need to tell her more often.

I'll take pics of the new AFOs when WG returns. We sent her off with the camera. yes, we only have one camera. Yes, I put it in the care of a six year old.


GB's Mom said...

One sounds easy, doesn't it?

Ashley said...

They make such cool AFOs now. Thee were no colours or patterns or anything available when I was a kid.

Linda B said...

Andrew wear AF's too. For shortened hamstrings from toe walking. He's had to have botox injections and serial casting because he wouldn't wear the AFO's cosistently and regressed. I was told he will need to wear them until he is done growing. I always feel bad for him on the hot days. Where do you get your socks from? I have to find a place to order some...

Acceptance with Joy said...

Hi, The toe-walking thing caught my eye. My Little Guy toe-walks, too. Not 100% of the time and he is not autistic. I think he could be taught not to. Whenever I see him doing it I call out, "Heels, walk on your heels!!" and he drops down on his feet. No one mentioned to me that this could cause future problems. He has HUGE muscles that stick out of the inside of his calves. I'm sure it's from toe walking. Where do I get more information on this so I can be armed when I go to bat for help? Thanks!!! Blessings, angela

Cyndi said...

We have a kid who wears KAFO`s (knee, ankle, foot,orthoses) because she has CP. It is a year round thing to keep them the way they need to be. The only thing she looks forward to is picking something new out from time to time when they need to be replaced. They really do help her to stand and walk straight.