One difference between this trip and those that have come before.
Carter will be coming along.
Usually, when we go to the Cleveland Clinic (since the distance almost always requires a hotel stay) we leave Carter here with his grandparents. On the longer surgery trip he stayed with his Aunt. But this time, after getting a phone call that Carter was having a few issues with the other kids in the Peer Program at Bennett's new school, it got me to thinking...
See...recently Carter has been really up and down. I haven't spoken much about it yet because it is fairly new, and of course like anything else it is yet another thing for me to try to wrap my brain around in this fucked up Special Needs Universe in which we try to exist.
Lately I have heard quite a bit of ‘You love Bennett more than me’ and ‘You don’t even like me anymore’ or even ‘I wish we didn’t have Bennett here’. Heartbreaking things to hear come out of your child's mouth, in many ways worse that Carter telling me 'I hate you!!!!', which, while I am sure is coming someday, is easier to take than him questioning whether or not his parents care about him.
Like most things with this ride we’re on, I have no idea how to even begin to fix it and feel powerless. It is yet another casualty in this war...the shrapnel of these Special Needs Grenades goes EVERYWHERE and takes a piece out of EVERYTHING.
After I got the phone call from Step-By-Step Academy, that afternoon I invited Carter along for this trip. He seems to be happy about that. I think once he gets there and sees how boring it is he’ll choose his grandparents instead on future trips, but at least this lets him feel less excluded.
That’s the plan anyway.
As for the interactions he is having with the Autistic kids at the school and with Bennett...well...at heart I know he is a good kid. He means well and he's often shown me to be very bright, generous and giving. But he, like Jen and I, are under lots of new and unique pressures we’ve never faced before. Our worlds are up and down a lot, and sometimes we don’t know which way is up.
That’s got to be affecting him since he is so young and doesn’t know how to process the feelings. We do the best we can with trying to work through stuff with him, but the bottom line is that if the kids at the school are being negatively affected by Carter in any way then he’ll need to be pulled out, since it is their needs and growth that is paramount here.
The person I spoke with at the school about it is going to try to work with Carter, and we'll be syncing up with each other later in the week to see how it is going. On the home front, in addition to the invite, Jen and I will try to be more aware of Carter and his needs, but it is a difficult thing to do.
Bennett requires a LOT of attention and unfortunately we JUST THIS WEEK lost his current Nurse's Aide. She was coming 4 nights a week and Saturday mornings but now we only have her one night, and it will be a while until we can set up another agency that accepts the Medicaid waiver. That's hard to find.
Long story, one that I will hit when we get back.