The only reason I am not in the fetal position as we approach the proverbial “autism cliff” is that I have been able to put many supports into place for him, and I am extremely fortunate that I even have choices for his adult future.
He turned 21 in May. The only reason I have choices is because I got the ball rolling the fall after he turned 19. Planning his future began two years ago.
I had thought his turning 18 entailed a lot of details, with guardianship, revamping our wills and legal documents (which sorely needed attention), and figuring out the quagmire of SSI and Medicaid, etc. Back then we had the guidance of our wonderful special needs attorney, and although government documents are not my “thing,” my husband and I figured it all out with her guidance. I felt that I reasonably understood it all. We moved on. I thought we’d done the hard part.
As we approached his 19th birthday I reached out to both his private school and his case manager at his home district. I did get guidance on what was coming up. There would be an application to the DDD (Division of Developmental Disabilities), the government entity which takes over after Performcare in NJ ends. There would be the intensive NJCAT, the interview which would determine my son’s future budget, as he moved into adulthood. I would have to choose a service coordination agency which would help me create his ISP (Individualized Service Plan, the adult version of the IEP), which would guide me in choosing an adult day program, if that was the post-graduate avenue I chose. Finally, there was selecting the adult day program. The latter only applied if he got accepted to programs, and there was no waiting list.
As always, I relied on the guidance of my amazing autism mom friends, many of whom have older children than I do, and who had been through all of this already and could guide me. I asked them to be my “adult autism sherpas.” If you haven’t already done so, make friends with other autism parents and make sure a few of them have kids older than yours. I would have been lost without their guidance, particularly in this post-Covid world.
My Silver Lining : Ensuring a Bright Future Where Justin Will Be Safe, Productive and Happy
Here is some of the best advice other autism parents gave me, and some things I figured out for myself.
- A few months after Justin turned 19, I turned to Performcare, the government agency responsible for care for autistic children, from birth to 21. I requested some in-home ABA assistance to help him with Daily Living Skills. My coordinator put me in touch with a colleague who personally reviewed all of Justin’s documents for his application to the DDD (I had to find his initial diagnosis from 16 years prior, save everything!), The reviewer personally turned them in for me. This expedited matters, and made certain that his application was complete.
- I had a friend help me prepare for my virtual interview for the NJCAT, the document which ascertains his future government-funded adult budget. It was a rapid-fire interview. Having an idea of what they would ask beforehand was a huge help. I was asked many questions about his behavior, his daily living skills, etc. The most important thing my friends told me regarding the NJCAT was to truthfully answer each question regarding his level of independence, as if it was his worst possible day. This is not the time to brag about your child’s accomplishments.
- Ask those autism mom friends you’ve made how they like their support coordination agencies, the entity which takes over from the schools and helps you navigate the adult world. Also, ask about their actual service coordinators. Their guidance helped me choose an incredibly knowledgeable agency which has made both the creation of his ISP (the adult world IEP), and his transition into the adult world run smoothly. I picked my agency due to the initial agent’s ability to answer all of my voluminous questions, and her responsiveness, two of the most important qualities I required in an agent.
- The last piece of advice I will give I figured out on my own. Justin turned nineteen in 2022, not that long after the world opened up again. I took it upon myself to research adult day programs, two years in advance, just so I could see them myself well ahead of his graduation, mostly to rule out those that would not be a fit for him. I am so glad I did. It often took months just to get emails returned to visit these programs. From start to finish, even after eight months of reaching out, I had only seen four of them. I knew I’d have to go back the following year with him, so they could observe him. At least I got to take a few off the table, which helped this year in making my choice. Some programs require multiple observations. One agency required four. This is difficult to navigate with your child in school, and for working parents. Start as early as possible. I began the formal process four months after he turned twenty, and we are just finishing up now, after his twenty-first birthday.
The best advice I can give to parents approaching their adult autistic child’s nineteenth birthday is to start early preparing for the transition, and ask for lots of advice from other parents of autistic adults whom you trust. For me, their guidance was invaluable. I wish the best of luck to everyone going through the transition.
Due to starting my research early, my invaluable connections to other autism moms, and sheer perseverance, my son will be attending a wonderful day program. It is five days a week and run by young women who are passionate to see the program succeed, because their own brother is a participant. My hopes for Justin are that he will thrive there, and resume the horseback riding on Saturdays he did before Covid.
My reach goal for him is that we will go on an Autism on the Seas cruise together, in the next two years.
Never say never.
My silver lining will be that he has choices, and a bright future where he will be safe, productive and happy.
Ultimately, that is all that matters for any child, no matter what age.
ABOUT THE AUTHOR:
Kimberlee Rutan McCafferty is mother to two sons on the autism spectrum, and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of Raising Autism: Surviving the Early Years, which is on sale at Amazon. https://autismmommytherapist.wordpress.com/me-and-my-blog
Read the article here.