Thursday, June 21, 2012
I've seen many families who insist their children mind, use their manners, and do not let them get away with much. I have also seen other families struggle until their child is an adult and able to move away from home who never quite achieve this. It is tough. I still struggle with it, but I have also found that as I raise the bar of expectations for Lizzie that she and her sisters meet my goals for them every time. It might take a while to get there, but it happens in their timing, and sometimes it even happens in my time (notice I said sometimes).
I remember when Lizzie entered Kindergarten for her second year, I realized my goals needed to shift. The first year I was hyper vigilant. I constantly watched and hovered over her. Of course, that was the first year we knew her diagnosis as well, but the second year there was a shift. Chris and I began to transition from being overprotective and letting her slide by to realizing we had to raise our expectations. She had shown us quite well that she was capable of learning. It took a while, but our ultimate end goal now is to teach Elizabeth what she needs to be independent when she becomes an adult.
Granted we think we it might take her a little longer than Sarah and Rebekah, but we know it's possible and it is our ultimate goal. Even now I am teaching her how to cook, clean the kitchen and do laundry. As she gets older we will learn other tasks as well.
It is an easy trap for us to fall into when our children have a special need or need to work a bit harder to achieve their goals that we try to shelter them and do everything for them. There are some children who are severely autistic or disabled who will need extra care for the rest of their lives, but Lizzie isn't one of them. And many children with special needs do not fit into that category.
I have a friend who spent years working with disabled adults. She has told me stories about adults who were capable of caring for themselves but never given the chance. I remember listening to her tell me about a man whose mother was dying and she could no longer care for her son. My friend had to teach the man how to do his laundry - he did it, he learned to cook and clean and take care of himself with assistance. That was the point in which I realized we could not be that mom. Because my dad died when I was young I realized at a young age I would not live forever, but never did this idea concern me more than when it came to how did we prepare Elizabeth so she could live on her own? She may always need a social worker to look in on her or her sisters to be there to offer assistance when necessary but Chris and I had long conversations and still have them about what is our next goal to teach Elizabeth to be independent so when we are no longer with her she can thrive and function in society. Is it tough? Extremely. Is it important? Nothing could be more important.
I think the trap that most parents fall into is not realizing they can't live forever. And let's face it, in this tough economic time, most of us cannot afford to create a trust fund for our children. So what do we do to help our children? Begin researching? What is your child capable of and what are you expecting of him? Are you doing too much for her? Are you allowing him to get away with things he shouldn't? They are tough questions, but they need to be asked and answered. How can you help your child be ready for the day when you are no longer able to help him? What kind of programs are available to offer assistance? What kind of wait list is there? Can you apply before your child is 18 years old or do you have to wait until that time? If not apply early, especially if they have a long waiting list.
Your inability to live forever does not have to spell disaster for your disabled child. Ignorance or denial won't help them either. You can make the difference - be your child's advocate and as they get older if they are verbal, teach them to handle those situations while you are there to help them navigate them.
I hope you all have a good week.