When my son, John, was diagnosed with autism at age three, all my focus was on early intervention and educational goals that would hopefully prepare him for a regular school setting. Once he entered the special education program in the public school system, the years quickly went by with education goals as our main focus. It wasn’t until John reached eighth grade that it hit me. “What is he going to do after school? What if he can’t get a job? What am I going to do with him during the day? What kind of adult life is he going to have? I can’t care for him by myself for the rest of his life!” I knew I needed to immediately refocus his Individualized Education Program (IEP) on plans for his transition to adulthood. What I realized was that after school ended, there were very few services available for adults with autism. John was about to fall off a cliff.
I was very fortunate to become involved with a local non-profit organization called STARC of Louisiana (providing a lifetime of Services, Training, Advocacy, Resources, and Community connections). Their programs include early intervention, daycare, respite care, work training, vocational employment, home care, and residential living to help move individuals through a lifelong process toward greater well-being and independence.
I worked with John’s IEP team to make daily living skills, social skills, and vocational skills his main goals, while continuing to maintain his current level of educational goals (since we knew he had reached his maximum level of comprehension on those). Now, it was time to prepare him for life after high school.
The school coordinated transportation and a staff member to accompany John three times a week to the local STARC day program center, where he spent one hour doing different kinds of tasks – shredding, filing papers, etc. It also gave him an opportunity to learn more about the center and become more familiar with the staff. Our goal was for him to attend the day program every day as his “job” once he finished school.
I also got John approved for ABA (Applied Behavioral Analysis) sessions at home. A therapist came twice a week and spent time working with John on social skills and safety skills. They did a lot of role-playing such as reacting to someone knocking at the door who he didn’t know, and walking to a stop sign, stopping, looking both ways, then crossing if it’s safe. They would role play “conversations” where he learned to ask questions of others like “How was your day?” or “What do you like to watch on TV?”. This really helped him be more comfortable and know what to expect in social situations.
But my biggest obstacle was John’s need for independence as a young man, while also being in a place that was safe and with 24/7 supervision. As a single parent, I knew I wouldn’t be able to care for John by myself for the rest of his life. STARC of LA came to the rescue again. They reached out and shared they had raised enough money to open another men’s residential home, and wanted to invite John to live there with seven other men. This was an answered prayer from God. On July 25, 2018, I moved John into the home, where he has his own room with all of his Disney movie collections with him. The home is staffed 24/7 with loving, compassionate people who are there to support him, but also continue to teach him how to live independently. They’re transported to the day program center Monday-Friday, where they do vocational work, exercise, and art projects, and go on frequent outings in the community.
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Since John moved into his home, he has thrived. He loves his independence (he hasn’t asked to move back home once!), and we go out to dinner once a week and talk over Skype. I’m seeing my son live a life that I never thought he would have a chance to. And he’s becoming the man he was created to be.
Here are some suggestions that may help you in your child’s transition journey:
- Seek out any organization in your area that may have programs for younger children. They may be open to expanding it to include adults.
- Reach out to local autism chapters or community groups to see what other parents are doing. There is strength in numbers, and a group of families who need the same type of services holds a lot of weight.
- Reach out to your local state representatives and senators. Let them know about the lack of services that are available in your area, and ask them to work with you and local/state organizations (Office of Citizens with Developmental Disabilities, Department of Health, etc.) to make these programs available. I found that several of these elected officials have children with disabilities as well, and they become eager to help. Take local chapter representatives with you so they can share their knowledge and support.
- Consider making daily living skills, social skills, etc., priorities in your child’s IEP beginning at the junior high level. You can maintain the current educational skill levels while focusing more on the skills he or she will need to live as an adult in society.
- If your school offers internship opportunities for students, ask if you can create one for your child that would take him off-campus to a local shop, gym, or day program to practice social, vocational, and living skills.
- If a residential home is not available in your area, find (or start up) social activities for young adults. You can have scheduled movie nights, go bowling together, board game nights, etc. Anything that will give these young adults interaction with each other.
I know the opportunities John’s been given are not available to everyone. I know how blessed I am to have found them for John. I want to encourage you to not to give up. Keep asking. Keep looking. Find support from other parents like you. Get help from your local officials. The more we shine the light on this issue, the harder it will be for others to ignore. I want to thank Autism Parenting Magazine for allowing me to share my story with you.
STARC of LA can be found at www.starcla.org.
This article was featured in Issue 118 – Reframing Education in the New Normal