Susan's Blog

Wednesday, November 2, 2011

And Now, A Moment of Venting

One thing that’s been plaguing me about this effort to carve out an individualized adult experience for Nat is how much work it takes. It really is work. It’s stuff I’m not good at, either. Phone calls. Meetings. Broken up Sundays looking at apartments. Figuring out people without overthinking and getting all anxious. I have to make so many phone calls and go to so many meetings to keep everything and everyone on the same page.  I am getting sick of that page. How do I balance all that is going on right now, in terms of the logistical and planning work and also in terms of my emotions?

If we had just gone for a slot in an already-running, state-approved, group home, we’d be settled. It’s like that dumb billboard on Storrow Drive:  If Nat lived there, he’d be home by now, so to speak. But I wanted to make a setting for him that I could control. Location, staff choice, roommate matches, philosophy of the home.  I wanted to be able to design that to fit Nat’s needs.

It’s like way back when, when I wanted to create a school for him. Or homeschool him. I wanted to do it right, I knew what he needed, I wanted to do everything I could to protect him from stupid and cruel people. I brought him into this world fairly ill-equipped to handle any part of it and so it is my responsibility to protect that dear soul the best I can. That means thinking about what he needs, a lot of thinking. That means coming up with a plan. That means learning about how the mechanisms work. That means finding money. And that is just the shittiest thing ever: trying to get organizations to give money to something.

And that’s not all I’ve had to do. I’ve had to reach out, connect, meet, and charm. Cajole, raise consciousness, call people together. I’ve had to live on tenterhooks, hoping schedules work out. Trying to keep my own quick hot temper in check when people are not moving as quickly as I do.

I wanted to be able to select roommates that were a match for him in terms of communication abilities and desires.  Did they communicate? If not, do they want to be with others?  The wanting is the thing. Nat now wants to communicate or at least to be with people his age. So his roommates must be that way too, in order for Nat to keep growing and feel fulfilled.

If we had gone for the home we saw, Nat would have the same experience he has now in his residential school. Nothing wrong with that, and a lot quite right, even. But I wanted more than that. I wanted Nat to be working with people who have experience in his kind of trajectory — where he is headed — and his interests.  So I have been looking for staff people who are active, who like sports, running, biking. I have been looking for staff people who are well-versed in ADLs and not just management or damage control. In other words, I want positive people who believe in Nat and will try to push him and open doors, expand his life, not simply maintain it.

If we had gone with an up-and-running group home I would have no choice in where it would be, and so I would not necessarily be able to see Nat easily. I cannot see him that easily right now; it is about a half hour away and planning is required.  I want to be able to run into Nat or at least meet him places or know where he is on a given afternoon, simply because he lives nearby and so the kind of activities he does in the community will be obvious to me:  which ice cream store, which Starbux, which YMCA, which subway stop. Also, living in an area near me that I have chosen gives Nat a sense of familiarity and as we know with autism — or at least with Nat — familiarity breeds comfort breeds happiness.

So I gotta make all these calls and run out at a moment’s notice to see apartments where the parking is lousy because it’s the city and where the landlords might be weird because they’re used to renting to shithead college students. Where the air smells like pilot light gas and cockroach spray. And yet the landlords have the power. And they have the gall to appear skittish of my project here — my beloved son and his dear roommates — because they don’t know what a group home means or what autism is or they wonder if disability means difficulty for them, the landlords. (I don’t even know if they are thinking all this, I just feel it. I imagine it. Try talking my imagination out of something, good luck.)

I gotta pressure people to get things done and seen and approved because we are under a time constraint; I don’t want Nat to destabilize by living at home for too long because his group home is not ready. We have to conduct interviews with whatever resumes come in and hope we’ve made the right choice.  Hope to God that CORI and reference checks and Google and Lexus Nexus are all we need. Hope our gut instincts are right. Because who pays for it if we are wrong, God forbid???

But still, I think it is better to do all this than trusting Nat to utter strangers in a strange land.


Susan, this is just exactly IT. this is it. this rant is our whole life; my kid is only 6 but it’s the same rant. it’s all on us. everything. and it matters so much.thanks for this post.

— added by jessica on Wednesday, November 2, 2011 at 10:48 pm

You’ll get it done, you and Ned. And you’ll get it done right, because you are remarkable in your tenacity and your approach. But it has to be draining and frightening. So let it out, this rant. Because you deserve it.

— added by Kathleen on Thursday, November 3, 2011 at 8:56 am

You can add to that the frustration of not getting returned phone calls or endless “I’m not in leave a message” and never hearing from them again. I find the most crucial people you are trying to reach never return phone calls or have excuses why they don’t when you finally catch up with them. A lot of hoops to jump through and it’s maddening. We had to get my son on Medicaid when he went to live at the group home he resides at. I’ve heard stories of it taking YEARS to get everything straightened out and going. But, once it’s done, it’s pretty much done. It is time well spent when and if everything works out.

— added by Sharon Jones on Thursday, November 3, 2011 at 9:13 pm

Susan I commend your efforts and your diligence. Nat is extremely fortunate to have you as his mother! You are a remarkable woman!

— added by Lewis Marcus on Friday, November 4, 2011 at 9:26 am

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