Part 3 of  “22at20, Deconstructed.” Over the past month we have addressed 2 of the key takeaways that we discuss during our presentation; collaboration and early planning. In this post we will discuss creative visions.  We hope you are able to take these ideas and share them with your team members, and create your own successful transition!

Everybody has a vision of the perfect life for themselves or their child.  In that vision, we see happy, healthy, productive, safe, well cared for adults.  We see them being a part of a large group of friends and, of course, we see ourselves being there forever because, after all, we are immortal.

Over and over again I’ve seen dreams dashed, far more often than those realized and fulfilled.  Let’s face it; vision requires a number of prerequisites and most of those don’t exist.  We need financial, programmatic, clinical, staffing, and therapeutic supports.  For those of us whose children qualify, we get some of these through State and/or Federal programs.  These all have restrictions, policies and procedures that often take our nirvana-like visions and reduce them to “you get what you get.”

There’s nothing wrong with nirvana and big dreams, those keep us hopeful and energized.  But right now, where we are in history, we are still learning how to help our loved ones with disabilities exercise rights and freedoms.  Hell, they just got them in the last generation!  We are still just now closing institutions!  So we really need to work with what we’ve got.  That’s not the same as accepting it, but as we work together toward changing societal expectations of behavior and equality – our kids still need homes and lives.

Thus, the word “creative.”

For Nicky, we knew the traditional road of group home living was going to be difficult at best.  It wasn’t just us who thought so; we had called upon a number of Nicky’s caregivers and friends who also said they couldn’t envision him living in a group home.  Nicky loves quiet, the ability to be by himself when he needs to, be a part of an activity or not…and he loves relationships.  True, meaningful relationships with people he can trust and know they are a constant for him.  And, Nicky has had so many people in his life who love him beyond words; caregivers, respite people, peers.  So we know will also enrich the lives of those who know him.

BUT, Nicky also needs at least 1:1 care during all waking hours, and 2:1 in the community.  Right now, unless he were to move home, a group home seemed the only viable solution that would meet his needs.  We thought the rest – the quality and happiness of his life – would have to be secondary.  One of the factors I have, for 20 years, called “The Great Sadness of Autism.”

I tell about an experience I had years ago whenever I do the 22 at 20 workshop, that was a pivotal moment in this story.  I was called upon to attend a meeting with a human services provider I was working for (HMEA) to speak to my journey with my son.  The meeting was attended by the President of Nonotuck Resource Associates and and leaders from a church who were considering a project together with the 2 agencies.

After describing Nicky’s journey, I stated that we only had a few years left before he turned 22, and that we were afraid of the future, because “we have no choice but to put him in a group home and we don’t think he’ll thrive, but he’s too challenging to be in any other situation.”

Nonotuck’s President looked straight at me from across the table, and changed my world in one statement.

“How dare you suggest that your son cannot be successful in a setting other than a group home?  I think you’re wrong.  I think if Nicky were with people who love and believe in him, he could live a very happy life in Shared Living, with a family of people taking care of him.”

First thought: nobody speaks to me like this.  Second thought: he has no idea what he’s talking about.  Third thought: wow, I’m going to find out more about this!

2 years later, I made the phone call I always planned to make – to George, President of Nonotuck.  I told him it’s time to continue the conversation.  So, we did.

And this is where the creativity began to flow.  How about a Shared Living situation with group home staffing?  We hatched the plan, which we’ve dubbed “Hybrid Shared Living.”

With the basic idea in mind, we connected with Auburn’s SPED Director.  The story continues in the first of this series, the blog post called “Trajectory Planning” that was published on October 9th.

The takeaway for this is multi-fold.

First, in hindsight I should have studied the different types of housing a little more closely because without that fateful meeting with Nonotuck, I wouldn’t have considered anything other than a group home.  Unfortunately, that would also never have been suggested to me by the State or the schools – we were all stuck on the same page.  So learn EARLY and learn all you can, and don’t shy away from being creative and then making a proposal.

Second, if we hadn’t felt so strongly that Nicky wouldn’t do well in a group home, we wouldn’t have been open to other suggestions.  We (parents) are often so fearful and so exhausted by the time our children are nearing adulthood, we just fall in line where we are told.  That person-centered planning approach is critical.  Again, unfortunately, decision makers – despite what they are saying right now – are not embracing that concept and once again, it falls on families to speak up.  We held on to our convictions about Nicky.

Third, we weren’t afraid to reach out to high-level administrators at the agencies.  I have worked and collaborated with many, and with only a couple exceptions I can tell you that administrators want to hear from families, they want the opportunity to talk about their services, their approaches, and creative solutions.  If you are trying to work with an agency who is not willing to explore “hybrid” situations that are reasonable and well-planned, walk away.

In another post coming soon, I am going to talk about Nicky’s actual house, because that is a story in itself that deserves its own discussion.  TTYL!