Susan Senator

While raising our kids to be able to advocate for themselves, we also need to still advocate for them. That job never ends. In my case, Nat is currently not communicative enough to tell us specifically what he needs in terms of housing, so I have had to use my best judgement.

I don’t think parents realize their own power. I don’t mean power in terms of beating or besting someone; I am talking about the ability to make things happen — the power to fulfill certain dreams. Many of us give up, to one degree or another.  But the thing is, we should not. So many of you come to me with open terror about autism adulthood. While there is reason to be proactive, there is also opportunity to stop and think about what you and your adult child want, and to keep that vision at the front of your mind.

Why is it working so far, in Nat’s house? Staff? Location? Roommates? All of these and one more: the parents are active in making their opinions known. We are not afraid to speak up at the family meetings –once a month, with staff and house manager — and give our input. Our service provider (the organization we chose, licensed by the state, who hires and administers staff, budget, etc.) is open to our ideas and they have organized the house according to our wishes — within reason. If one parent wants to choose or even veto roommates, he cannot. The ultimate placement decisions lie with the state that is providing the funding. Traditionally the state has not wanted to support these parent-input person-centered-planning ventures because they feel that parents get too hot under the collar. They feel it is liable to fall apart. While they are right to be concerned and cautious when giving parents a say, the Department of Developmental Services should also remember that their own state-run homes fall apart, or people withdraw, too.

Parents in our situation only let everyone how they feel, but they cannot expect to get their way, necessarily. Still, the service provider is obligated to factor everything in.

The house manager and service provider staff do listen to us when we talk about how we all want young men who are active and interested in socializing. Being verbal is not required; rather, it is the social willingness we are looking for.  We also want them to be the same basic level of autism and ability, but of course with their own differences, so that they are comfortable with each other but could also learn from one another. We did not want mixed disabilities, mixed ages, or mixed genders. We were thinking about what we would like when living with roommates, or what is typical of guys that age (in their 20’s).  I mention this because sometimes it is an interesting set of possibilities when you mix disabilities, ages, etc. A person with CP, for instance, would bring with him staff for physical care, which gives the house an additional staff person(sometimes). But to us, the abilities would be so divergent it would not make sense.

Our service provider heard us and the young men are well matched. This does not mean there have not been any incidents our outbursts; that goes with the territory of these three young men. But the staff have kept them safe and continue to take them out into the world to do food shopping, runs in the park, trips into Boston, the beach… All the things I wanted for Nat’s from the beginning.

And for once in my life, there have been very few surprises. The parents planned so much with the service provider and each other, that when the guys moved in it felt good, even though there was almost no furniture or food!

Successful adulthood housing arrangements are about putting your thoughts down on paper, fearlessly. Talking to people who have been there. Learning the funding steams and what is available, what you can afford. Don’t be hampered by worry. Keep writing down your questions and you will stay focused and when you come across an expert you can ask. But just as you’ve done for your kid when he was growing up; you push your agenda — politely and tactfully — and you don’t accept answers that feel wrong.

You can do this. Stay strong and focused. Eyes on your kid!