Figuring Things Out (Thankfully)

Mystery photo  The mystery of the Really Early Wake-ups was in part explained when we heard a hacking cough emanating from Charlie early Wednesday morning and beheld him rubbing a very runny nose. [“Mystery” photo accompanying this post will be explained after the jump.]

I called the school to tell them that he was sick. Charlie started to get the case of CDs and tell us “white car.”  He stood, long and tall in his blue hooded jacket, head a bit downcast, in front of the open door, as Jim and I quietly noted that he wouldn’t be able to go, due to his cough and to being sick. Charlie stood unmoving for several more minutes before putting the CD case down and going to sit on the blue couch.

It’s always worrisome to have a sick child, even with something relatively “mild” like a cold (though I’m rating this one as something more like a bad cold). I have been feeling relieved that Charlie has come down with his first cold of the season this week, as Jim and I have some days off with the Thanksgiving holidays and my parents being here too.  

Even more, I’ve been feeling very thankful that Charlie wants so much to go to school and that he seems to be liking it so much. I had some questions after reviewing the incident reports from Monday and Tuesday and wrote to the principal as I didn’t have email addresses for his teacher or the behaviorist. The behaviorist called me back this morning and we had a good exchange. My main question was regarding the helmet, as it was noted on one of the reports that Charlie has been taking it off.I just wanted to let the school know, at this early date, that (in Jim’s and my experience), the more one tries to keep it on, the more he tries to get it off and the ensuing struggle just prolongs things. The behaviorist listened and we went back and forth and suddenly I said, with a sigh and without any contention, as, based on recent experiences, that seems to indulge the warrior mom in me rather than help,

“This is a just a really difficult topic.”

She agreed, with a little, friendly laugh. We talked for a few more minutes while I reminded myself, being able to keep these sorts of exchanges non-contentious is going to be key.

Because, it goes without saying!, we’re beyond thankful that Charlie seems to be settling into his new school and finding that it suits him and, too, that the teachers and staff seem to think that he’s in the right place. And that they like him. And that maybe we can figure out how to deal with some very vexing issues—that helmet—with the new school. 

We’re very thankful for the school and its staff, goes without saying. And it being Thanksgiving here in the US, I wanted to thank everyone of you out there for all your support, for your kind words and constant warm wishes over the past couple of months and, really, the past year which has been, I have to admit, one of the most difficult for Charlie. Charlie having behaviors problems of one  sort or other has been a fact of life for many years, but Charlie being 5′ 7″ and being so much more independent have made these much more difficult for him and everyone. Not being able to scoop Charlie up in our arms and ferry him out of a situation has meant that new strategies, many of a pre-emptive sort, have to be devised.

Even with that, life has gone on for the three of us. These past few months have also seen the publication of Jim’s book, On the Irish Waterfront, and we’ve all been enjoying the Irish Waterfront tour that has seen Jim speaking at the likes of NYU, my college, the Tenement Museum, an Irish businessmen’s association, and many other venues, sometimes with Charlie and me tagging along. Now that it’s almost December, Jim and I have both made it through yet another semester of teaching—nine classes between us—and I’ve been feeling particularly grateful to find myself planning out, of all things, a trip to Greece next March with a group of students. (Ok, maybe I’m not exactly enjoying dealing with travel agents, getting deposits sent in, and contemplating assigning roommates, but I am thankful that I’m even able to have these things to worry over besides certain other things.) 

Anyways, the fact that I’m even contemplating going away again for (gulp) over a week and to a place very far away says to me, I think things can be ok, especially after some moments of real crisis; moments when I’ve found myself talking to EMTs and frantically calling Charlie’s neurologist, really tough conversations with Jim about what lies ahead for Charlie and for our family. I do think we can make it possible for a child with Charlie’s many needs to be in this world, at home with his family, and that, even while we have to make many many accommodations for him, we, Charlie’s parents, can go on with our lives too. 

And so this Thanksgiving we’re especially thankful for all of you out there from (once again) our tight team o’ three to all of you.

(In the photo, I’m taking a picture of an ancient Greek inscription in Delphi, home once of Apollo’s Delphic oracle, to whom people once came, to find out what to do—to figure things out.)

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17 Responses to “Figuring Things Out (Thankfully)”
  1. Dwight F says:

    >> The behaviorist listened and we went back and forth and suddenly I said, with a sigh and without any contention, as, based on recent experiences, that seems to indulge the warrior mom in me rather than help, “This is a just a really difficult topic.”
    🙂 It really is a tough thing to balance, when to push and go with the flow. Because there really are times to push. It’s very good to hear you sounding like you are at ease, feel safe to be open with this behaviorist.

  2. Niksmom says:

    Wishing Charlie a quick recovery from his cold…and a very happy and peaceful Thanksgiving to you and your entire family.

  3. autismvox says:

    I’ve been thinking a lot about how we proceeded with the school district and maybe that was the way we had to deal with them, but nurturing a more conciliatory and “let’s do this together” kind of partnership—I feel this is so key.
    Warmest wishes to everyone for a lovely holiday!

  4. Louise says:

    Happy Thanksgiving to my friends and their family. If this is just the beginning of Charlie’s new school adventure, he is in for an exhilarating burst of energy and creativity and power. It’s wonderful for all of you.
    Blessings on you all.

  5. Louise says:

    Happy Thanksgiving to my friends and their family. If this is just the beginning of Charlie’s new school adventure, he is in for an exhilarating burst of energy and creativity and power. It’s wonderful for all of you.
    Blessings on you all.

  6. emma says:

    Working with the school district is vital, but it is so hard to do so if they seem/are unwilling to listen. I hope that things go better with this new placement, it certainly seems like a positive beginning!
    Happy and peaceful-easy -feeling Thanksgiving and I hope Charlie is well again soon.

  7. autismvox says:

    He’s pretty lively, keeps wanting to go places, 2 “mini bike rides” already rather than his usual long ones. Still coughing but he won’t take a rest.

  8. Happy Thanksgiving to you, Jim and Charlie. Matt lost another tooth yesterday, this was lower with an upper just two weeks earlier. Has Charlie lost any teeth lately? Been a long time for Nick. I need to check Nick’s height again as his Dad mentioned recently he is catching up to him, last time was 5’8
    This AM I ran into an old classmate of Matts out with his brother and father and another ex classmates Dad. They all go to same middle school that I did not want my kids to attend. Nick has decided does not want to go to zoo high school as it is college prep, so four years of homeschool for high school.

  9. Regina says:

    Happy Thanksgiving.
    Hope your family is having wonderful day, and that Charlie is feeling better soon.
    Warm regards.

  10. Regina says:

    Happy Thanksgiving.
    Hope your family is having wonderful day, and that Charlie is feeling better soon.
    Warm regards.

  11. autismvox says:

    He is much better, thank you. Still has the cough but he was up for riding his bike today, and more.
    He hasn’t lost any teeth lately—when he was saying “loose tooth” a few weeks back, am suspecting (1) he did have a loose tooth and who knows what he did with it after it came out; (2) he didn’t have a loose tooth, but a sore or some such in his mouth and he was saying “loose tooth” to describe “some kind of pain in my mouth like when I had a loose tooth.”
    For more years of homeschool for Nick, will that work out ok?

  12. I think homeschooling is the safest option for Nick here in Los Angeles plus we get to keep the computer while he is doing that. I am starting a 2 yr term for another special ed committee so I hope to learn more about school issues for Matt and transitions for them both into adulthood. The mtg yesterday was on conservatorship – called guardianship in other states.

  13. autismvox says:

    Oh yes—another thing that I know will come up for Charlie before we know it.

  14. Jill says:

    I don’t understand why he has to wear the helmet. He’s at a new school now. Are they somehow mandated to keep the helmet on him?

  15. Jill says:

    I don’t understand why he has to wear the helmet. He’s at a new school now. Are they somehow mandated to keep the helmet on him?

  16. Jennifer says:

    @Jill — an IEP is considered a legal document, so schools are obligated to follow the IEP as it is written, until it’s revised. Behavior Support Plans are part of an IEP, and therefore, the new school must, yes, follow it as it is until they do a new assessment and write a new BSP. (I’m assuming, of course, that the helmet is part of the BSP, or mandated elsewhere in the IEP.)

  17. autismvox says:

    thanks, Jennifer……we will be having an IEP meeting sometime in December and the helmet will certainly be a topic of high priority.
    Things are already different at the new school. When it was warm one day, the behaviorist noted to me that they took the helmet off Charlie and had him cool off. — Yes, they never did this sort of thing at his old school.

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