We Share the Same Fears

We Share the Same Fears

As parents of children with developmental disabilities, we share the same fears. Our experiences with our children are not the same as those of our friends. The differences may start during pregnancy, at birth or as our child ages.  Differences may include if and when milestones are met, health issues, and most importantly “what is going to happen to my child as they get older”.  This is where the fear comes in.

I know these fears. I understand these fears. I have these fears. I didn’t worry so much when my son was younger. He was a cute and friendly kid. He did well in public school until he didn’t. Then I found a private school and moved heaven and earth to get him into that school. I had the law on my side and I used it to get what was needed for my son. He is doing really well in school which is great. But here comes the fear….what is next? He has one more year in school and then he graduates. (I am thrilled that he is a summer baby or he would be graduating this year.)

I have some ideas about what might be next. He might work through a supported employment agency. The problem with that is that he does not have the ability or stamina to work full time.  So then you have to paste together other programs to fill his day so that I can work outside the home. He might go to the day program associated with his school. The program runs during school hours so this would be a good option. It is a familiar setting with his peers and staff that he knows. But it is expensive….more on that later. Another concern regarding graduation, how does my son get to his program? How do we train him to use public transportation or Access Link?

What is the fear involved in this? Will he be safe? Will he be happy? Will he thrive, learn and be successful?  These sound like the fears of parents sending their children to college, right? The big difference is our children are vulnerable. They can’t fend for themselves. They can be taken advantage of by strangers. It’s the natural instinct of a parent to want to protect their child. Despite the chronological age being that of an adult, our children do not behave the same as their like-aged peers. They need protection.

What is our biggest fear as parents of children with special needs children? We all know what it is but we don’t want to talk about it. What will happen to our children when we are no longer alive? Who will care for them? Where will they live? Who will love them? It is the elephant in the room. It is always there. It doesn’t go away. The answer lies in preparing for that day, when we are no longer here. I am beginning to plan. It is not an easy process. It is time-consuming and at times heart wrenching. It is difficult to answer the questions that need to be asked. The answers are not easily come by. Like a student, we have to do our homework. If we do a good job, our child will be well cared for until the time that they die.

Sandra Bishins, LSW



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