I remember the day I found out my son was on the autism spectrum. I went to a support group and they told me: ”Take time to mourn the loss of the child you will never have. Grieve for all the plans you made. And then, focus on loving and planning for the child you do have waiting for you at home.’”
Billy was three years old at the time.
Today, he’s 22, and though it stung, that advice remains some of the best I’ve ever received. Yet, even once I started to re-evaluate what I’d pictured for my son’s future-rethinking what I’d assumed about where he would go to school, what kind of job he might have, where he would live-I still needed to plan for this new reality.
After Billy’s diagnosis, my life became a blur of paperwork. I was swimming in referrals, medication trials, insurance denials-not to mention the EEGs, IEPs, and IQ tests. The acronyms alone made my head spin. And it didn’t get easier as he got older-the closer Billy came to aging out of the school system, the more work I realized I needed to do. All the planning and learning was practically a full-time job.
So, I made it my actual job. I started working in the disability community and learned about accessing services and setting up person-centered plans for the future.
Today, Billy takes college classes, works part-time, and recently got his driver’s license. He is on the path to a paid full-time job and independent living. And me? I’m here to tell other parents of kids with special needs: You don’t have to do this alone. It doesn’t have to be so hard.
Here’s my ‘cheat sheet’ to get you started:
Have a young child who was just diagnosed?
- Sign up on the PUNS (Prioritization for Urgency of Need for Services) list and get a case manager (https://www.illinois.gov/dd/Pages/SignUp.aspx).
- Find a support group. Check out national web sites like www.autismspeaks.org, www.upsfordowns.org, or www.cerebralpalsy.org if you need local contacts.
- Don’t have an Individualized Education Plan yet? Go to www.Bridges4Kids.org and pick some goals that are important to your child. Set up an IEP meeting at your child’s school.
- Consult an attorney about starting a Special Needs Trust for when you are gone.
- Use your network. The Jewish community is full of organizations that can help. Check out Jewish Child and Family Services (http://jcfs.org/) and Keshet (https://keshet.org/) to see if any of their programs might be right for you.
Planning for middle school and high school?
- Think about what your child loves to do and how you can apply that to job skills for the future. What pre-employment skills do you need to teach now for your child to be successful later? I suggest a Person-Centered Plan (www.lookbackplanforward.com), a facilitated brainstorming session where you set goals and plan the steps to get there. (Full disclosure: I train the Illinois facilitators. We do one for my son every three years.)
- Look for social and recreational opportunities for your child through organizations like Best Buddies (www.bestbuddiesillinois.org), Special Olympics (www.soill.org), synagogue youth groups, or the Friendship Circle (http://www.fcil.org/).
- Have a school transition planning meeting at age 14 1/2.
- Learn about Employment First (www.dol.gov/odep/topicsyouthsoftskills/softskillspdf).
- Don’t forget to renew your PUNS status every year.
- Update your Special Needs Trust.
Have a child in high school and don’t know what’s next?
- Schedule another Person-Centered Planning meeting. Discuss job coaching, networking opportunities, and potential housing options as your child (and you) age. Related: Check out CJE SeniorLife’s LINKAGES program (http://cje.net/linkages).
- Continue to train toward independence with chores at home and outings into the community for things like shopping, banking, and taking public transit.
- There’s a long list of things to do when your child turns 18: Have them sign the Delegation of Rights to Make Educational Decisions form. Get an ID card. Register to vote. Make guardianship choices and Power of Attorney plans. Apply for SSI (Supplemental Security Income), Medicaid, and reduced transit fares. Become a LIGAS Class Member (https://www.dhs.state.il.us, type LIGAS).
- Update your Special Needs Trust.
By TERI STEINBERG
Also published in JUF News
Teri Steinberg is a frequent lecturer, facilitator, consultant, and trainer on disability issues, and has been interviewed many times for TV, radio, and print. She has worked in the disability community for over a decade through grants from the Illinois Council of Developmental Disabilities, the Department of Human Services and the Illinois State Board of Education. Steinberg consults transition programs, schools, and families on person-centered planning in keeping with the principles of self-determination and living an inclusive life in the community. She is also the founder of Plan A Better Future (planabetterfuture.com). For more information or personalized consulting, email TeriSteinberg@PlanABetterFuture.com.