Dec 14, 2012 1 Share

Back to Square One

Close-up of "Chance" square on Monopoly board with dice and game piece.

It’s been about two years since Cody actually began receiving day-hab services. After a long deliberation, Bill and I have decided to end them. While there were times when it looked as though the services were helping Cody progress, there’s really not much to show for it now.

When we contacted Cody’s Service Coordinator and let her know of our decision, she suggested we try other agencies. But the truth of the matter is that this sort of job is a popular occupation for college students who are social services and psychology majors. Most of them are very young. And they use this sort of employment as a stepping stone in their career. When they do that, they don’t stay. When they don’t stay it means there is no consistency. If there is no consistency, the plan is to no avail.

In addition, being a direct care worker for people like Cody pays very little and it requires hard work and dedication. Hard-working, dedicated people are often individuals who have more life experience under their belts than the average 20-something college student. But many people like this have families, mortgages and other obligations that prohibit them from accepting low-paying jobs such as that of direct care staff. Finding a person like this who can or will accept such a position is frankly, quite rare.

So, we are now in the process of assessing our next move. What Cody needs is to learn life skills that will help him become more self-sufficient. It is all well and good to say that the day-hab services did provide social interactions for him. But did he learn social skills from those interactions? The answer to that question is mixed. When you have young people coming in who have never had any sort of life experience with people with autism,  they sometimes seem to forget their own social skills. They often lack the understanding that they need to communicate with Cody the same way they would with anyone else.

In a number of my columns I wrote about Stephen. Stephen was awesome. Not only did he talk to Cody with ease, but he also set a wonderful example for him. His behavior and manners were exemplary of those Cody needs to see, learn and emulate. But others who have been sent to teach our son those skills did not measure up at all. We have had those who frequently called to ask us what we wanted them to do, in spite of the plans we discussed in meetings and were put down in writing. We had one young man who lied about our washer and dryer being broken so his supervisor would give him permission to leave early. We had another young man who stole an item from our home. And we have had more than one tech who has been way too interested in spending time on his cell phone. Those are not behaviors I want Cody to emulate.

Since I am at home all the time now, it is easy for me to take on a larger portion of teaching those skills myself. And I love doing it. This has really been what I wanted all the time and hopefully it will be permanent. But I want Cody to have every opportunity to be successful in learning and using these skills, he can possibly have. So the question becomes now, what kind of service can help my son do that?

Cody has a “Partnership of Hope”  (Medicaid) waiver. We have to find a beneficial service the waiver will pay for or he will lose it. His next meeting with his Service Coordinator is in January and she is looking into options for us as well.

There is a facility in Springfield that is supposed to specialize in these services. Participating would mean that Cody would go there for a day or two every week. The program is structured like a continuing education program for people with ASD and other intellectual and developmental disabilities, and claims to teach the skills Cody needs to learn. The classrooms are small and appear to be well organized so perhaps Cody would be able to focus and learn without feeling overstimulated from the noises and activities of overly crowded areas.

So we’re not giving up, there’s still hope. It’s just a matter of which direction to head to find the solutions we’re looking for.

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Good luck with that