Susan's Blog

Friday, February 17, 2012

It’s time to get baking

Ned and I went to Nat’s house-to-be today for a family meeting with the house manager. The guys are scheduled to move in on Feb. 28, so now we are getting down to brass tacks. Today’s meeting was for us to learn about staff scheduling and hours, emergency protocols, communication and meetings, remaining details, and checking in on the furnishings.

I sat with everyone around the table and at first I was in high-energized learning mode, excited to see the whole thing coming together, at last. I like all the people involved: the two other families, who are so much in sync with us and our values; the staff psychologist, and the house manager. Everyone was so positive. They call this a “learning program,” in that the philosophy is lifelong growth and learning for our young men. Structured, meaningful days, well-supervised nights, full and social weekends, and lots of time out in the community. These guys are really going to be part of our world, as the Little Mermaid would say. And it is their world, too; we are not planning anything without their tastes, hobbies, desires, and skills in mind.  Furthermore, the weekly meetings will be check-in periods for everyone, meaning the guys will meet with the house manager and the house staff and they will have a chance to express their wants, their questions, and their issues the best way they can; the staffers will go over schedules, safety, and house rules with them, as well.

Suddenly all my light dimmed, as if I were having a brown out. I think it was when they were talking about doctors’ appointments, and how they would be scheduled by the staff now and attended by the staff. I was welcome to come along, or even to continue taking care of this myself, but they wanted me to know that there would always be staff to do everything in place of me.  “Even if you take him home, there will be staff available if you need to keep him here for any reason.”

“What?” I said. “Ha, this is really a change.” And then my face must have crumpled a little, because H, the house manager said, “That’s the face that parents make when they realize what a group home means.” Ned and I no longer have to be on deck at all times. We are free to continue to be, but there is an equally powerful counterforce in place. This is forever. This is the future.  And it is all beginning on the 28th.

The rest of the meeting I felt like lying down. I didn’t; I took good notes and asked important questions. Everything is in place, down to the party we’re going to throw for the guys on move-in day. The plan is for us all to get as much stuff over to the house on the 26th – 28th, with and without the guys’ help. Then on the afternoon of the 28th, Nat will pack a suitcase of his remaining stuff and we will move him to the new house.

After the meeting Ned and I walked through the house, planning out exactly where the bed would go, and what else we needed to get for him (a desk and a bookcase from Target, I guess).  The sunlight was coming in the many windows (Nat has three in his room), warm and soft white. Outside I could see the lawns already greening up because of climate change, a mild winter, and the fact that it is already mid-February. Those three reasons give me a mixture of feelings: the solidity of the fact of seasonal change; the sweet treat of a warm winter; the slight pang of alarm at the distant threat of global warming.

And I suppose that these were also the feelings I had while walking the golden oak floors of Nat’s shared home: a solid feeling of safety and care for Nat; the sweet excitement of move-in and new things; and the sting of sadness from the sweeping change about to occur in our family.  But we’ve done this (somewhat) before, and now we have truly a house in the way we wanted it to be for Nat. We’ve waited a long time, all of us, to get it right.  But now that it is here, I am aware of a tiredness that could easily spread out into a sadness. I may need to cry. But I know that after that’s done, I’ll be ready.

Meanwhile I better get going on the cake plan.


I have to say, Susan, that reading your family’s journey from Nat’s diagnosis to adulthood has been extremely therapeutic for those of us in the beginning stages of raising child(ren) with autism.
Your love and care for Nat is so evident in the way you have carefully planned out this next stage of his life.
One of my favorite quotes is from Anne of Cleves (she was Henry VIII’s fifth wife) and she said, “If it must be done at all it must be done with grace.” and you, my friend, are grace personified.

— added by Sunday Stilwell on Friday, February 17, 2012 at 4:43 pm

Thank you, Sunday. That means a lot, considering how much I value your ideas and perspective!

— added by Susan Senator on Friday, February 17, 2012 at 4:45 pm

one of my favorite posts of yours, ever. crystalline. loved it. also, a little terrifying. BTW the 28th is my birthday. i’ll be thinking of Nat! a kind of birthday for him too.

— added by jessica on Friday, February 17, 2012 at 9:50 pm

Is this a residence you obtained and arranged like you originally planned or a state run/funded house? If so, is this residence better than you had said they were previously? I know you said they were not well run and were looking to get a house or apt. with other families but that had fallen through.

— added by Alison on Saturday, February 18, 2012 at 9:50 am

This house is state approved, planned by a service provider that two families have chosen. This is a shared living model, with a live-in caregiver and part-time support staff, because there will only be three young men. Once we get our fourth, we will convert to the group home model, with rotating staff. This service provider is the key to all of this. Ours, Advocates, Inc. of Framingham, Mass., is different from many in that they are innovative and they listen to clients. This house was created under the principal “person-centered planning,” which is all about considering the individual’s needs and likes, finding a property, and participating in all parts of the process (employee interviews, house-hunting, house rules). Many families and individuals do not realize they can do things this way. It takes a lot of energy and effort (as my past year shows), but it is possible.

— added by Susan Senator on Saturday, February 18, 2012 at 11:23 am

I have to echo Sunday’s comment. Not only therapeutic; informative. I have, for a few years now, followed along from a somewhat remote, slightly dissociative standpoint, with my head in the sands of denial. While I don’t dispute that Nik will make tremendous strides between eight and twenty-one, he is not one who has been “lightly touched by autism.” I have to face the reality that he is unlikely to ever live independently. It’s a bitter pill to swallow so I have tried to ignore all thoughts of it until now. But watching your process as it has unfolded has helped me to realize that it does not have to be the death of a dream. It can be, instead, the birth of new dreams, new possibilities — ones which matter to Nik. It’s a gift I wish I didn’t have to receive, but I am grateful for the grace with which you have given it.

— added by Niksmom on Sunday, February 19, 2012 at 10:15 am

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