Monday, June 30, 2008

Summer Break-No Posts Until August 15th

After blogging since February of 2006, I am going to take the summer off and will return to blogging on or about the middle of August.

I apologize for not posting sooner however I had hoped I could write a bit more before now. Dear Son has been out of school for a few weeks which makes it very challenging since I provide total care for Dear Son, work two days a week and don't have any nursing care. Dear Son has also been having more seizures for the month of June so that is adding to the mix. He started summer school last week for a few hours in the morning and that will continue for a few more weeks. Overall, he is enjoying himself in summer school and loves swimming the deep water. We are fortunate to have a nice summer school program that is adminstered by the special needs park district and they have a lot of fun activities scheduled for him in addition to swimming two days a week. He has three adult males that are able to help him enjoy the swimming pool so he is having a lot of fun.

We have also enjoyed walking again this summer. This was the first month since my back surgery last year that I am able to walk or do any type of exercise and we are fortunate to have a nice walking trail around the golf course and nature trail to enjoy. We are walking around an hour a day most days of the week.

Thank you for your interest in Dear Son. We hope you enjoy the summer.

Friday, June 13, 2008

For Better or for Worse, For Richer or for Poorer…A Father’s Day Tribute to Dear Son’s Dad

I vividly remember visiting the residential/day program for Dear Son just a few weeks back. As you may recall, this was my first visit to a residential center of any kind as I searched for an appropriate day program for Dear Son. When I was there, I couldn’t quite shake the images of the children living there or wonder just what it would be like, through a child’s eyes, to live there. Many of those children were placed there by their families and it was hard to imagine, what it must have been like to make the decision to place their child there. I know first hand how difficult it is to work full time when you have a special needs child, since daycare for them is virtually non-existant. On the other hand, the idea of placing “my” Dear Son or any of my children in a facility, would be too much for me to bear. I can’t imagine what that day would be like, when you look that child in the eye, and leave them there. The fact is that while many places are underfunded and try to do a good job, I don’t think that many would do as good of a job as a loving parent would at home.

As I walked through the facility, I was bothered by the lack of sheets on the beds and the lack of personal effects on the children’s dresser. I wondered if anyone came to visit them since I hardly saw anything personal in any of the rooms. Even if you didn’t want to leave things that were valuable there, you’d think there might be some family photos or some indication that people or families had been there to visit these kids. But I couldn’t find much.

As I checked the sign-in sheet, I noticed there were only a handful of visitors the month I was there and for all of the last six months. But the most striking thing from my visit, was an article in the promotional brochure.

The brochure was at the entrance to the facility. In there, it detailed one particular resident and his family’s decision to place him there, twenty years ago. The child, now 23, had been there over twenty years. While the child had spent many years there, the parents were active with the facility and with their son. What struck me about the article, was that the father was a former Big City NFL football player. Not only that, but he had his own business, that had grown to over 200 plus employees. This father, in the peak of his professional career, had made the decision to place his child there. I couldn’t help but wonder why anyone with good financial means would chose a facility for their son, when the financial resources available at this facility would not allow the child to be cared for, in the best manner. I mean, let’s face it, with one aide to seven severely disabled children, what kind of care will the child get? What I couldn’t get out of my mind, was wondering, if that same father had a normal son, if he would chose to place him somewhere, where the care would be less than what the son could have received at home?

I imagine that as a pro football player, there was a time in that man’s life where he wanted more. Wanting more and being a professional football player would be a big dream for a lot of men. Achieving that goal would be huge then and even now. More than that, I would imagine a father who loves sports would love a son who is active and one that could play sports and do those kinds of things that the father loves to do.

But I just wonder, would that former pro football player, have placed a normal son in another home? Or would he be have bonded more with him, teaching him to play “the game” of football and possibly coaching his team. I mean, how does a person come to the decision to place their child in a residential facility, when you have the means to take care of them at home? How? How do you sleep at night and enjoy your life when you don’t know if your son is getting fed, getting their diaper changed or enjoying life?

And that’s where the difference comes in. Father’s Day is Sunday and I can’t help but think about Dear Son and his father. What would Dear Son’s life be like if we had chosen to place him in a facility? Dear Son’s Dad was quite athletic as well. He was an all star football player, a wrestler, a weight lifter and a body builder. I imagine that his father dreamed many times of having a son to play sports with; I don’t imagine he ever dreamed of changing his son’s diapers at sixteen or lifting him out of a car and into a wheelchair. I don’t think he imagined giving his son a dozen meds several times a day or feeding him via a g-tube. But his father is different.

He takes good care of Dear Son, even though we are divorced. He respects me and helps me whenever I ask. I remember one time, several years back, where Dear Son had an “accident” and had a bowel movement that leaked out of his diaper and when he walked across the living room, left a trail of stool, some twenty feet long. I was in the washroom less than two minutes when this occured. When I called him to ask for help and support, he drove 100 miles round trip to help me with Dear Son-to clean up the carpets and to give him a bath. Not many men would do that.

He makes sure that when he takes Dear Son for the weekend, that he’s clean, he’s fed and his diapers are changed. He takes him out for walks and tries to have fun with him. When Dear Son’s getting his lunch via the g-tube, he sits next to him on the couch, with his arm around him, and watches man shows, as his Dad calls them-things like auto racing and other manly sports, so they can bond together. The feeding takes three hours. I doubt someone does that at the residential facility. I bet those children would love it.

When he gives him a bath, he makes sure the water temperature is just right, so Dear Son doesn’t get cold. A hired caregiver might not care if that happens.

He jokes around with him and tries to make him laugh. Overall, he tries to make his life better. I think sometimes, that the commitment to a disabled child is often more like wedding vows. You have to take care of them for richer or for poorer, in sickness and in health, for better or for worse…and that he has done. Mother Theresa once said, “It’s not the how much we give, but how much love we put into giving.” And no one has done that better than his Dad. Happy Father’s Day, Dad. And thanks for stepping up to the plate.

Note: Dear Son is sixteen and suffers from a progressive neurological disorder and intractable seizures due to a random gene mutation of the ARX gene.
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