Support for all members of special needs families

Transition Check-In: Back to the Diving Board

“Many things in life, at most times, are filled with both uncertainties and possibilities.” – Nigel, age 18

“Life is a holding pattern.” – Tanya, age 98

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The phrase “back to the drawing board” supposedly originated from a cartoon featured in the New Yorker in 1941. The cartoon showed various military men and ground crew racing toward a crashed plane, and a designer, with a roll of plans under his arm, walking away saying, “Well, back to the old drawing board.” And as I found myself moving Nigel back to my apartment, with his big captain’s bed and many boxes of belongings (he would be a hoarder if left to his own devices), just two months after his much-prepared-for move-out, I couldn’t help but think of it.

With the situation I described in my last post about Nigel’s transition, things rapidly deteriorated. He had started pulling out his hair and eating it again, and refused to eat meals with the rest of the household, becoming extremely reactive whenever the other client walked into the room and thereby disturbing the entire household, although every effort was made to accommodate him (Nigel). This would occur even when the other client hadn’t said anything or even looked at him. Finally the house manager called me at work one day (he’s not even in school anymore and I still dread, and receive, those calls) and succinctly stated, “Nigel’s not functioning here. He needs to be moved.”

And the curse word that I reserve for situations such as this almost escaped my lips, but in an effort to maintain diplomacy, I said that I would contact his case manager right away. She then proceeded to describe Nigel’s reactive behavior, stating, “It’s obvious he hates the other client.” And diplomacy all but flew out the window as I said, “Whoa! Has Nigel actually used the word ‘hate’?” “Well, no.” “Then let’s not make assumptions about how a person who has difficulty expressing himself thinks or feels!!”

And it dawned on me that no matter how old he is or where he lives, I will always have to fight for him.

His very new (to him) case manager, who has more experience with older adults but is happy and willing to learn as she goes with Nigel, emailed me that she contacted four different agencies, and we had a meeting set up with one of them within days. However, it turns out that these agencies provide services other than housing. They do daily check-ins with those who have apartments, and they provide transportation and job coaching, etc., which will be great in a little while. But until his HUD goes into effect (we are on month two of a four-year waiting list), the only other housing option for him (besides being on a pad on my living room floor, since my younger son moved into the second bedroom two months ago), would be placement in another supported living home.

Why that won’t work:

a)      Several of those homes in our area have babies in them (he can’t handle the crying)

b)      What happened at this last house could easily happen in another home, including his reactive behaviors

c)       If there are no openings in our area, he will be sent anywhere within the state that they have an opening, as far as 300 miles away

d)      He wants to remain in this area, near family and friends, so he can have support while he works on his GED

And something else dawned on me, equally as significant: It’s not about the other client.

I think Nigel realized (and eventually I did too) that he doesn’t belong there. Not just that particular home, but any of them.  He’s not ready for his own apartment yet, but someday – with daily check-ins, transportation, and other services that these disability-related agencies provide – he will be. And until then, I can’t stand by, able-bodied, and let him be miserable. Yes, I’m exhausted after 15 years of single parenting. Yes, I wanted more than anything to spend some one-on-one time, finally, with Aidan before he graduates from high school. Yes, I wanted Nigel to feel like he could be semi-independent.

But the supported living home didn’t work. And I know there might be others that might work for him. Unfortunately with the limited resources in our area, we can’t be choosy. Often there’s only one choice, one opening. If there’s something about it that won’t work for him, the only alternative is to stay in my living room. And of course no one here is enjoying that.

Instead of “back to the drawing board,” for me it’s more like “back to the diving board.” As I fill out applications for 3-bedroom apartments and get the money together for the deposit, bracing myself for another move, I feel like I’m diving into cold water, and I’m dreading it. Things were supposed to go much differently than this. But they didn’t, and now I’m right back in the situation I was trying to change. And as I dive off that board, back into it, I’ll try to keep in mind Nigel’s positive words from over three years ago, when we experienced a similar life-changing decision that didn’t work out in our favor: “Maybe some good will come of it.”

I’m sure it will. We just have to get there.



21 thoughts on “Transition Check-In: Back to the Diving Board”

  • I’m sorry things didn’t work out as you had hoped for Nigel and both you and Aidan. 🙁

    This hurts my heart. (((HUGS)))

  • Maybe some good will come of it. Vent on my shoulder any time.

  • Ill come help u move again! That’s frustrating news about Nigel’s first move into independent adulthood, hopefully he will have gained a better perspective from it.

  • Oh, Tanya. Big sighs, here. I am so, so sorry. How utterly exhausting. I am here if you ever need to talk, and I will keep my fingers crossed that something will open up, that you will have continued strength and courage. It WILL be ok.

  • Tanya, I’m so sorry you are going through all of this. If you ever need someone to listen, please don’t hesitate to call. Miss you! Stay strong, my friend. :). Love & hugs, Ann

  • It almost feels like when Lucy pulls the football out from under Charlie Brown’s foot, right when he’s trying to kick it.

  • I’m so sorry you (and Nigel, and Aidan) have to go through all of this! I’m glad, though, that you see a time when Nigel can live independently, that there’s a light out there somewhere, even if so far away.
    How is Aidan with this change, by the way? Is he going to be able to cope with living with his brother again?
    Hugs, kind thoughts, and fresh air to the three of you.

  • So sorry that it didn’t work out for Nigel….but maybe it’s working out for the best now 😉

    I have a feeling that you are doing the right thing.

    At least you (and Nigel) tried. It may work better next time, when he’s ready 🙂

    xx Jazzy

  • Everyone, thanks so much for your hugs and support. It is a little easier getting through the tough times knowing we have such wonderful people out there pulling for us! Love to all of you.

  • sending all my love and positive energy your way. let us know if you need help moving! xoxo

  • I am so disappointed for you darling Tanya
    Sending you really good thoughts for a better situation
    This “And it dawned on me that no matter how old he is or where he lives, I will always have to fight for him.” breaks my heart
    It does
    Because there is the other question that it brings up for me – who will fight for him after I am gone

  • Sorry to read this update, what can I say “crap” and more “crap”. Take a deep breath, good time to implement some really strict home rules so there is some “positive” harmony in your new setup, i.e. the boys pulling their weight and taking some off your shoulders!. I´ve always said to my son just because you have challenges, that doesn´t exclude you for the chores. Hugs to you Tanya px

  • No question it’s a diving board into the coldness of reality. Is the water still or running? I’m sorry about the situation and all the anxiety and uncertainties. Most of all I’m sorry you feel 98. You sure don’t look it!

  • I think of your little family all the time. I hope things are going well and that you find the next thing. We will always be there for our children. I hope that some good has come of your unexpected dive back into the pool. xoxo

  • Sorry Tanya….. Adulthood is quite hard I am finding. Seems Nigel is too.

  • i sincerely hope there is some way for this to work out with as little difficulty as possible – and yield a positive result.

  • Thank you, Vector. We moved to a 3-bedroom place soon after this post was written, so at least everyone has some privacy! But I’m realizing that my son’s transition to adulthood is a much lengthier, more complicated process than I anticipated. I appreciate your well-wishes.

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