Okay, no child is perfect. As parents we deal with their imperfections. We teach them how to overcome their shortcomings. We even hide their flaws from people outside of the home. We accept the role of parents as being teacher, counselor, disciplinarian, and protector. We know that it is our job to help this child prepare for the next developmental level. Whether he is facing kindergarten or college, he is developing on some level and needs our support.
What about those children whose imperfections impact their quality of life? What about those children whose lives will be affected by their imperfections forever? What about those little ones who will never go to college or become completely independent? What is the role of the parent of these precious gifts?
Surprisingly, it is exactly the same. Help this child prepare for the next developmental level. As Director of Special Education, one of my jobs was to conduct an annual meeting for each child and plan for the next year. If the child was significantly impaired, we had to look at plans for after school services end. I cannot tell you how many conversations like this I heard.
“What plans to you have for Amanda after she finishes school?”
“She’s just going to live with us forever.”
I’d say, “Yes, but what about after you die. Who is going to take care of her?”
“Well, I don’t know. Her sister will have to take care of her. Somebody will take care of her. I’m not worried about it.”
What happens? The student reaches the age when school services are no longer available. At the end of that year he or she goes home like just like before. Only when fall comes, he or she can’t go back to school because they no longer meet the criteria for school services. So they stay at home. And they stay at home. And they STAY at home. Eventually the parent is tired of looking at this young adult hanging around the house. It’s not long before resentment begins to set in. I have seen it with the best of parents. When anyone is a constant responsibility, you begin to resent them.
Not only is the young adult suddenly a burden to his parents, but the parent has predetermined that one of his siblings will care for him the rest of their life. Can you see the sibling? Hey, I don’t remember signing up for this. In later years if the sibling decides to make arrangements in a facility for the impaired adult, then he or she has to deal with the guilt of the decision. Is that right? Should parents be able to saddle a child with the responsibility of a sibling for the rest of his life?
If you have been trusted with the life an impaired individual, do not take that responsibility lightly. It is important that this individual be equipped to exist in this world as independently as possible. It is your job to prepare him for the world. A support group for your child’s specific disability will be a valuable resource. By the child’s 14th birthday or before he enters high school, you should research job training availability in your area. Here are the kinds of questions you will be asked. Does he prefer to work indoors or outdoors? Does he prefer to work with people, animals or machines? Is he able to work unsupervised? Can he stay on task? The answers to these questions will assist the counselor in guiding you to the right position.
Investigate the need for guardianship. Will this individual need legal protection? If no one has guardianship over him, he will be responsible for any contract he signs. Could he be cohered into signing a contract for several hundred dollars? Don’t forget there are people in this world just looking to take advantage of individuals with disabilities.
Also, research group homes. There are group homes where each resident has their own apartment, yet there is a supervisor on site. Every morning the residents ride a bus to work and return to their respective apartments that evening. Investigate carefully. Be sure you read complaints against the facility. The really good ones have a long waiting list. Don’t wait until you need the apartment to apply.
With some modifications and accommodations individuals with handicapping conditions can live fulfilling lives. Please love these individuals enough to help them live a life they can feel good about. They have the right to live as independently as possible. Help them set and achieve goals. Above all else, help them celebrate their achievements.