Today, the last of my sons has aged out of the public school programs. Because special education programs have served him since he was three, his journey has been different than a student who was educated in the regular classroom, in that he could continue to receive services year-round, and until the age of 22 years. Although Kolya turned 22 years in February, he was permitted to finish the school year with his class.
This morning his teacher, Julie, led a small ceremony in his classroom. To my surprise, she had him enter dressed in a cap and gown! He proudly stood straight and tall next to Julie. She and another staff member said a few words, and presented him with his certificate of completion of the school program at Morgan Autism Center. Then, we were treated to a slideshow.
One of Kolya’s favorite activities is going to the mall. He has a favorite store where he heads to without any direction from anyone. Julie took him for one last visit to this store, Lovesac, and then all his classmates, classroom staff, and two other parents gathered in the food court to have lunch. Everyone chose from the different vendors in the food court. Needless to say, this is no easy outing with a group of students on the autistic spectrum but I must admit, everyone did a great job and was so happy.
What’s next for Kolya? He certainly will not be leaving home and going off to college. However, I feel as if I have been going through the same process most parents do to help their young graduate with the next step in life. I have spent much of the past couple of months visiting different programs for developmentally challenged adults and attending meetings on the best way to transition my son into a new program. There are not as many options for young adults with autism as there are colleges or vocational programs for the regular high school graduate. I visited six programs in our area: two that weren’t all that appropriate for him, two I believe could meet his needs, and two better ones that have waiting lists. Kolya is number 50 on one list — the other program already has 60 on its list so I didn’t even consider adding his name. Of the six programs, three are quite a distance from our home. Still two others where I already have sons enrolled, I didn’t need to visit, as they wouldn’t be appropriate for Kolya.
Most of the programs available for adults have a staff to client ratio of 1:3. One even had a ratio of 1:4 for some of their activities. Kolya’s education up until now has basically been a 1:1 ratio to monitor his safety (keep him from running away) and to help with his personal needs. Although at some point we may be able to decrease the need for 1:1 for him, I don’t think it’s wise to try this in a new program.
The Morgan Autism Center (MAC) runs the program I feel is best for Kolya. The adult program is located on the same site where he has been attending school. I approached the director of the Center in February with a request to allow Kolya to visit the adult program (AP) for an hour or so a couple of times a week. I suggested that one of the aides from his classroom take him to AP and make sure he was safe and to see how he could adjust to a much larger open space than he is accustomed to. It was agreed this would be doable and so the process began. Sometimes I received messages that things were going well and other times I was told things were not working out. I was totally confused. A meeting was called to discuss what might be the best solution. The staff was extremely worried about him running because of the larger space, doors next to fences that didn’t have gates, and not being supervised 1:1 at all times.
At first it was confusing for Kolya to go back and forth between his classroom and the adult program. He has always referred to MAC as school, but the adult program is not called school. After a few days he understood that when it was AP on his schedule, it meant going to a different part of the school site. He’s now becoming more consistent with correct terminology between ‘school’ and ‘AP’. I’m sure this will aide his transition and understand he’s with a different group of peers.
Here in California we have what are called Regional Centers. These centers provide funding and services for persons who have autism, cerebral palsy, and other developmental challenges. Kolya is with the Regional Center for our area and his social worker was included in the meetings and other communications. She also visited several adult programs to see which she felt was a good fit for him. Regional Centers provide funding for transportation and for clients to attend day programs. However, they don’t normally provide funding for 1:1 supervision, and I’m not in a financial position to pay for such a service.
Even though the MAC staff did not feel comfortable allowing Kolya to be a part of the AP because of the physical layout of the site (they were aware of Kolya’s behaviors, and that he would run away if he could), I made the point that regardless of whatever program he attended he would still need assistance to meet his physical needs as well as maximum supervision for at least the transitional time into any adult program he would attend.
They agreed to give him a 30-day trial period providing the Regional Center would fund a 1:1 aide. It appeared this had all been approved by the Regional Center. If the AP staff felt an aide would need to be present beyond the 30-day period, they must document the reasons, submit to the social worker, and another placement meeting will be called. The best news is there was an aide who already knows Kolya and was ready to step in for the trial period. So it looked like Kolya won’t have to wait for three years for something to become available like Ben did. Things were looking good for him to attend AP at MAC!
Until…
I receive an email from the Regional Center worker that the primary vendor for transportation will not accept Kolya because of previous behaviors on school buses. They must be reading reports from several years ago because recently there have been few problems with Kolya on the buses. To further frustrate us, our County paratransit will no longer come into the area of our house after 8:15AM. This could be a big problem should Kolya arrive at the day program early with no one would be available to supervise him upon arrival. The afternoon ride home looks more promising since the hours when the program ends and the hours the paratransit can be in our local area coincide.
Needless to say, I’m still stumped as to how Kolya will be transported to and from the program: I have two weeks to come up with a solution. Even on Saturday when the MAC staff has the weekend off, I’m receiving emails discussing how we might solve the transportation problem. MAC has been a great place over the past 15 years for Kolya. They’ve supported him from a young child through his teen years and as he grew into adulthood. It’s definitely worth the work to make sure they continue to provide a program for Kolya.
Wouldn’t you want a great place for your adult child with special needs to go?
Hi Marian. I really enjoy reading your posts. You have such an understanding of bringing a “normal” life experience to your sons. I was wondering if you ever thought of writing a book about all your experiences parenting differently abled children/adults? I am sure it would help many people. Thanks
I’ll admit, I’ve certainly had many experiences with my sons as I’ve tried to meet their unique needs, sometimes in “un-normal” ways. Sure, I’d be happy to provide you with a book. It would be personal experiences highlighting some special moments in my journey being a mom. In fact, I have already several hundred pages recorded. Do you have a publisher in mind who might like to take on the challenge of working with me? Just let me know. I’m glad you enjoy the posts. I’ll continue to add more as time permits. Keep checking back. And…
Here’s a brief update on Kolya. He’s now completed the first week of his trial period in AP. Transportation has not been resolved yet, so I’ve had to drive him to and from daily. Hopefully, he’ll have regular transportation beginning next week. Kolya’s managed to have only one melt down when he was told he couldn’t do one of his favorite activities. That’s wonderful news to me. He’s also been exposed to playing a harmonica!