Parenting brings enormous additional weight when your child has a special need. Besides the day-to-day challenges, there is the daunting issue of planning for what is an unknowable future.
Annie Lubliner of West Bloomfield, Mich. knows this firsthand, having raised a son with severe autism. Jonah, the eldest of her three children, is 29 – "A handsome young man who has taught me some of life's most valuable lessons, ironically without intending to," says Lubliner, author of The Accidental Teacher: Life Lessons from My Silent Son.
These days, Jonah has what most people would consider a good living situation. But getting to this point was a long process that required persistence, energy and lots of help, Lubliner says. Following, in her words, is a list of suggestions she says would have been nice to have when she was starting out.
1. You can never start too soon
When a child is young, the future seems so far off. Nobody wants to believe that their child might need lifelong support services. But when Jonah was 3, a wise social worker advised us to put him on a waiting list for placement in a group home. It seemed almost cruel at the time. I wanted to believe that Jonah would overcome his challenges and be able to function independently. "If he doesn't need the spot when the time comes," the social worker said, "you can always give it up."
2. Get into 'the system'
Community mental health provides a variety of services, from respite to support coordinators. But for the child to benefit from these services, he or she must be assigned a case file number. The reality is that we live in a bureaucratic world with rules none of us is particularly fond of following. But my reasoning was always, "If it ultimately benefited Jonah, who cares?"
3. Network with other parents
No one understands what you as a parent are dealing with better than other parents. Establish relationships early, and you will have a lifelong support system.
4. Stay involved
Parental involvement is crucial. Seeing that you care and are vested inspires others to follow your lead. Try taking a team approach, set reasonable goals and avoid being adversarial. It's simple but true: "You catch more flies with honey."
5. Think outside the box
Finding employment, in Jonah's case, was the most challenging piece of the puzzle. Jonah is unable to "attend" or sit still, and frustrates easily. But he loves to eat, walk and doesn't mind lifting heavy things. With the help of an aide, he has a little business delivering cases of bottled water to area homes and offices. This "micro-enterprise" is small but growing and is a reminder that "work" doesn't necessarily have to occur in a bricks-and-mortar situation.
6. Legal matters
Guardianship issues should be in place, as well as a letter of intent, a document telling the story of who your child is, what he or she likes to do, eat, etc. – and what your vision is for his or her future. View this document as another form of insurance if you're not around.
7. Ask for help
There are people who have paved the way. Find situations that you think work and talk to the people responsible for setting them up.
8. Be realistic
Aim high but remember that "perfect is the enemy of good."