By Sue Rawley
Since Aaron was a baby, I’ve been trying to get him out of my house!
It’s not as heartless as it sounds. In fact, it comes from a place of great love. Let me tell you about our journey thus far.
Like many moms of newborns, I was overwhelmed in the early stages of Aaron’s life. Here I had twins, one with special needs, lots of medical and therapeutic appointments, plus I was working full time. I was having difficulty just staying afloat.
But, at some point along the way, I found MAPVI (the Massachusetts Association for Parents of the Visually Impaired, state chapter of NAPVI, the National Association for Parents of Children with Visual Impairments). This was a major turning point in my life, as I found other parents of visually impaired children… and they had children older than my own! I was stuck in the day-to-day mode of diapers, feedings, appointments, etc., but I caught a glimpse of what life could potentially be like for my child. Actually, what life could be like for BOTH of my children! These other parents sometimes had more than one child and reminded me that we cannot forget that there are siblings’ needs as well.
I listened to their stories – about successes and difficulties. Although my child was still a baby, I had a vision of what I could expect from him, or at least strive for. I also knew some pitfalls to watch for, from being over-protective to knowing what to expect or avoid in school.
Then further along in our journey we met some visually impaired adults. I’d listen to their stories, both their successes and difficulties. I listened to some of these adults tell me and the rest of the group what they wished their parents had done differently. All of these adults I have met along the way have been people living independently, though there was a wide variety of level of independence. Some cooked for themselves, real cooking enthusiasts, while others always got take-out or prepared food. Some would always rely on other people for sighted guide or rides or stayed within walking distance from their homes, while others traveled the world.
So, how do I get my baby from here to my vision of his adult life?
It’s all baby steps.
Since encountering all these other people on our journey, my focus has been on how to get Aaron from his toddler swing to living on his own, in his own home. It’s been a path with many bumps and bruises, but he’s getting there!
We all want to protect our children and our inclination is to protect our special needs children even more. It does a great disservice to them if we give in to this basic desire to always be the protector. If we don’t allow them to experience those bumps and bruises, they won’t learn and grow. That can be said for all of our children, special needs or not.
So here we are, nearing the end of the High School years and looking at colleges! Aaron is currently a Junior in public school. He is in a fully inclusive setting, gets good grades, although he works his tail off for those grades. Social networks continue to be a struggle for him, but we still work on that. He has a bit of work to do before I think he’s fully ready for a successful college experience, but we are taking it one step at a time.
He has a desire to be successful, so I think he will get there… eventually!