“I can't think about that right now. If I do, I'll go crazy! I'll think about that tomorrow.” (Scarlett O’Hara, Gone With the Wind)
Do you share Scarlett’s approach when thinking about the future for your child with a disability? I know I do sometimes. When just getting through the day is a challenge, even the immediate future can loom ominously.
Yesterday my son David was four and The Future seemed a long way away. Today I woke up and he is 16 and a sophomore in high school. I remember everyone telling me “they grow up fast” when my boys were small, but their words were more accurate than I could imagine. The future is here, now. Graduation is two years away, and there’s a cliff waiting for my son. The Cliff waits for your child too.
The Cliff has always been there, but it’s often a big surprise to parents of kids with a disability. Most of us graduate high school and take the leap off The Cliff, either into college, technical school, marriage and/or a job. The way we land depends on many factors including education, coping strategies, past experiences, common sense, and connections with other people in our lives and communities. Now picture a child whose life includes disability. Each faces the same Cliff the rest of us do. Are they as well prepared as they need to be?
Since 1977, our kids have been guaranteed a free and appropriate public education (FAPE) under the Individuals with Disabilities Education Act (IDEA). IDEA has opened many doors to people with disabilities, and yet 70% of adults with disabilities are unemployed and live at the national poverty level. That’s what’s waiting at the bottom of the cliff, and it’s up to us to do all we can to help our kids avoid that future. Scarlett’s approach just won’t work here.
So what do you need to be doing? Start with the future you envisioned for your child before you knew he or she had a disability. Your dreams don’t have to change completely just because disability is a part of the picture; you may simply have to adapt your dream or plan to achieve it in new and creative ways. If college would have been a goal, it still can be; many new programs are springing up around the country that enable young people with cognitive disabilities to achieve an associate’s degree while learning important independent living skills. Assistive technology is making universities more accessible for people with physical disabilities. Self-employment and micro enterprise (small business) are becoming a powerful means of work for many adults with disabilities. Independent or supported living in the community is more feasible than ever before. If you have allowed disability to rob you and your child of dreams for the future, it’s time to reclaim those dreams and begin envisioning a happy, fulfilling and self-determined future.
Self-determined…what does that mean? Basically, just what it says. The person with the disability has the right and is given the opportunity to determine his or her own goals, plans, and dreams with the necessary supports and services. A Person-Centered Plan or Essential Lifestyle Plan is one means of creating a plan. The concepts of Person-Centered Planning and Self-Determination have been around for a while, but are beginning to be reality for many people with disabilities. You can research these more on the web; we have convenient links on the Texas Project FIRST website to get you started.
No dream becomes reality without a lot of planning and hard work. Steven Covey says “Begin with the end in mind.” Take a minute to think about where your child is right now, today. Now imagine what that setting looks like in the adult world. The world you create for your child when he or she is young will be the world he or she will know how to live in as an adult. If we create a safe “cotton-box” environment for our kids when they are small, we are going to find it difficult to replicate that setting when they are grown. The best place to practice real life skills is in real life. Look for ways to live real life.
“The Dignity of Risk,” by Robert Perske, further illuminates this idea. A link to this groundbreaking article (written in 1972) can be found at http://www.robertperske.com/Articles.html. Is your child being given the opportunity to try new things, take a chance, and even fail? Does she know how to speak for herself, make choices, and say no? What opportunities can you provide now to help him or her begin developing those skills?
Today David is a sophomore in high school, and runs on the cross-country and track teams. He proudly wears the letter jacket he has earned. Academic work is extremely difficult for him, but he is exposed to many things that enrich his life and expand his opportunities. We still have much to do before we get to The Cliff, but every step he takes provides opportunities for risk, for practice, for skill development. Many of those steps are scary ones, and some have resulted in failure. You and I have probably learned from our failures as much as, if not more than, our successes. Don’t our kids deserve (and need!) the same opportunities?
Our kids grow up fast. Instead of Scarlett’s approach, take Nike’s: Just do it.