Monday, May 3, 2010

On The Road Again...

Off to Cleveland Clinic, for just a couple of things. Another MRI...remember Bennett has to get one every 3 months, and Neuro-Oncology will be taking a look-see after that. Right now we are scheduled to be back Tuesday night, but as before we have left it open in case any other appointments or things open up.

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 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.



  1. We're about to lose our current aid to pregnancy, so back to the agency roulette wheel...

  2. I hope the trip goes well. Maybe if Carter sees first hand all that Bennett has to go through then maybe he will get a better understanding on why he needs more attention. It is definitely a hard thing to balance.

  3. The sibling thing can be a challenge...Shawn-Michael had just turned three when Colby was born...I was blessed to have my parents to help with Colby alot so I could have my one-on-ones with the oldest as much as possible...

    It also helped to have a good friend whose son was Shawn-Michael's best friend...She became a "second mom," and it was always a treat to be with his buddy...

    I think it was a wonderful idea to have Carter along for this trip...I'll bet you are right...He'll see that it's not like a "fun outing with Mom & Dad"

    The delicate balance between the children can be difficult...But I know that you and Jen will navigate through this challenge, just as you have all others...

    Let us know how the check-up goes...


  4. Well, I think you're doing a great job--taking Carter along will really help him understand what's going on. Parenting is always tough, and you've got special circumstances.

  5. I agree with Katy -- taking him along will and including him as much as possible is a good thing. I have two boys in addition to my daughter with special needs, and it IS a difficult balancing act. There are some great books about siblings of children with special needs that you might look into reading, as well as SibShops for when they get a little older. And I think extra alone time with the non-disabled kid is a good thing to put into practice. As far as the cutting remarks, I think they're very normal (one of my sons was always good at those while the other never said anything).

  6. Ironically I've heard "I hate you" from toby...but never that we love Trevy more. That comes from Bristel.

    For the record...parenting is WAY more complicated and challenging than I ever imagined. In a billion gazillion years.

    Before I actually had kids...I was a big sap and bought hook, line and sinker that Love conquers all. And if I just kept their love tanks full...they'd be fine. And while I still think that's an important piece of the parenting puzzle...I'm also learning there is a LOT more involved in shaping their little hearts.

    I'm doing my best. And praying like crazy it's enough...


  7. Hoping the trip is going well for all of you. I think this trip for Carter will be just what he needs. Hopefully it will help to show him that just because you and Jen spend more time with Bennett doesn't mean that you don't care for Carter too! It's hard on kids when they aren't quite old enough to understand it all. Give Carter some hugs for me. And hang in there Ken. It's not easy, but you have many friends here that have your back. {hugs}

  8. I hope the trip goes well. Carter might benefit from Sibshops when he is older. This one starts at age seven but some agencies have younger ones. You might all benefit from family therapy. You have been through a lot and its not easy for any of you.

  9. In my thoughts...
    Oh and the LOST thing is awesome! I have seen every episode of lost and am freaking out that its going to be over! OMG did you see last nights one???

    Happy travels. :)!


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