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.


Jodi said...

Happy Father's Day to Dear Son's father and all of the father's out there who go the extra mile. You are our kid's heroes.

Rambling Round said...

Wow! You said it so eloquently! My dear son's father also took him for better or worse, for richer or poorer. Thank God for good daddies, and Happy Father's Day to them!

Jaime said...

What an amazing Father and what a beautiful tribute to him. Happy Father's Day!

Poppy Q said...

Happy fathers day Dear Sons dad. I am glad that there are awesome men around like you, we celebrate you and the joy you give to your son.

jeanie said...

oh, so often you write things that show what a true blessing your son is - and I think that it is because of you and his father truly taking a long hard look at the good.

A lovely post.

Erin said...

Happy Father's Day to your son's dad. He sounds like an amazing father, the world needs more men like him!

Anonymous said...

You and DS are blessed that his father is so wonderful with him. Both the father and DS are truly blessed to have you. There are families that cannot cope well with their children, and sometimes it is better that they place them elsewhere than to build a house of cards. My husbands uncle had many special needs that the parents could not meet and manage their lives. They placed him elsewhere. It is worse if families try and fail to give adequate care to every and anyone in the family because they refuse to acknowledge that this is more than they can well handle.

Cath Young

Kath said...

Hi Dream Mom -

I have always been amazed at the personal sacrifices you (and Dear Dad) have made for Dear Son. While your efforts may be no big deal to you, not everyone can be like you.

Having lots of $ does not equate to being able to care for your special needs child in your own home. Maybe the family that you speak of knew their limits at provding in-home care and opted to use a residence home as a viable alternative.

All of us have different strengths and weaknesses. And we are fortunate if we realize early on what they are and can act accordingly.

Dream Mom said...

Thanks for all of the comments.

I realize that each situation is different, that every person has different strengths and weaknesses however for severely disabled children, who require total care for their every need, I can not in good conscience advocate or understand that substandard care, poor care, or in this case 1 aide to seven to ten children, is not an acceptable alternative in my opinion.

In the case where there is adequate financial resources, there are other alternatives, from having nursing care in the home or having aides come in that could manage that care.

This is simply my opinion and I realize that it may not be what others would choose but under the circumstances, I couldn't sleep at night knowing my severely disabled son may not be getting adequate care and may endure additional suffering (from not getting meds or getting bed sores from not being turned, etc.) because reimbursements are inadequate or because I couldn't handle the situation.

I respect your opinion to disagree.

Anonymous said...

This Dad is one of the best examples I have ever heard of what a Real Man actually is. Not every man can match this example. This son is very lucky to have these parents.

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