Sunday, May 04, 2008

The Purpose Driven Life

The home sat off the side of the road, it’s well manicured lawn fresh from a recent mowing and by all appearances, this was a nice place. The morning was crisp and I was early, all good by my own accounts. This was my first visit to a potential day program for Dear Son and I wanted to make certain I wasn’t late. I debated taking the tollway but decided upon the back roads to get to the place. Nothing against the toll road but sometimes the back roads are really pretty in the spring and it gives me a good idea of the road the bus might take to bring him here. Or not. I have to remember, the school doesn’t transport him here, that would be my responsibility.

I waited for the Vocational Counselor to arrive. At Dear Son’s last IEP (Individual Education Plan) they pushed for me to pursue a day program for Dear Son. Legally, he can stay in high school until he is 21, and they would have to provide transportation for him as well as all expenses for his therapies, as they do now. They are pushing for all of the special needs teenagers to leave high school after four years and pursue a day program or vocational training. I reminded them that unless I found a program that Dear Son would thrive in, that he would remain in school.

I stayed in my car and looked a little closer at the facility. On one end was the residential program, where the children and adults lived and the other end was the day program for the adults. I had heard of this program from Dear Son’s Orthopedic Surgeon, who serviced these children’s needs for the last nine years via the clinic. He felt the children were very well cared for compared to other places he’s been.

I looked at the windows, the white blinds all closed. As I peered up and down the large horizontal structure, every blind was closed. Somehow, that didn’t seem friendly to me. The building sat next to large radio towers, another negative. I wouldn’t buy a home near them and it didn’t seem safe to have them within fifty feet of the structure. As I looked over the lawn, I wondered what the backyard looked like. That would be important as that would be where the children would go when they went outside. I was hoping they might have a wheelchair swing. Dear Son would like that.

The Vocational Counselor arrived and we went inside. We signed in and waited for a while before someone arrived to greet us. I looked at the signature page and counted the signatures for April-only six so far this month. I looked back at February and March and saw that there were only a few every month. Apparently, no one visits much. We waited in the lobby and watched the reception desk, which appeared to be part of the medical clinic. A young woman sat in a tilt wheelchair, her feet bundled up in an odd type of cloth shoe that looked more like a slipper, as if to cover some sort of casting. I imagined it was Dear Son sitting there and wondered how long they would let her sit there alone, staring into space. I tried to peer into the room, to determine if it was a medical room or if it was a residential room. I saw what appeared to be a dresser of sorts which made me think it was her room. But no one came. Finally, after ten minutes or so, we were greeted by a nurse’s aide who phoned the woman we were scheduled to see.

She came to greet us and and walked us down the long corridor to her office. I peered into the residential rooms as we walked by to get a closer look. There were three beds to a room, each with it’s own dresser. There weren’t any sheets on the bed, but there were comforters strewn at the bottom of the beds. There was a single four drawer chest next to each of the beds. Most had no personal effects of any kind. I saw one boom box. I imagined that without any personal effects, there weren’t many visitors.

We chatted briefly with the woman as she asked for Dear Son’s information. She informed me that he was by far the largest teenager here, including the adults. At 164 pounds, well, they didn’t have anyone that size. I explained that I was here to visit the day program and was not looking for residential placement. This would actually be the first residential home I had ever visited in person, so I was certainly curious.

We walked down the hall and the first place I saw was the living/family room. It looked nothing like the pictures on the website. The website showed a bright, cheery, light filled room that looked like a nice place to live. The family room as I saw it, looked like it was rarely used. There wasn’t any seating of any kind however there was a large screen t.v. and some bookshelves on the other side. The woman told us that this was where the kids were every night. They watched t.v., got massages, played games, etc. Her words clashed with the surroundings because I couldn’t figure out where anyone would sit.

We walked down the hall and to the right was a small room with a sign outside the door that said, “Family.” I asked what the room was for and she said it was so the family could visit with the residents and have some privacy. I asked why they couldn’t visit in their rooms and she said they could. I didn’t believe her for a minute. Something just wasn’t quite right.

As we walked down the hall, I peered into the other rooms. No sheets on the beds. We stopped at this one room and she described all of the activities that took place there, when I interrupted her to ask some questions. To me, I needed to understand just who lived there and how they took care of them. There were 57 people there-1/3 were peds and the rest were adult residents over the age of 18. None were ambulatory. I wanted to know who placed them there-the family or the state. Secretly, I hoped the state had placed them there since it seemed so dismal that a family would do that to them, however I would be wrong. Of the fifty seven, fifty four were placed by their family and 3 by the state. Only one had behavioral issues. That was important to me since I was trying to find a Day program that had kids similar to Dear Son-lots of physical and mental disabilities but no behavioral issues. As I asked more questions, it appeared they were 99% public aid funded and hadn’t had a funding increase in eleven years. They did however had a group that financially supported them and helped them pay their bills.

We talked some more and as she continued the tour, we saw the bathrooms. She explained they were bathed every evening and had a sponge bath every morning. I thought that was a lot of work. As she talked some more, I began to wonder how many aides they had to assist them with their tasks. Turns out they have one aide for every seven children. That’s a lot of work to bathe them, get them dressed, feed them and get them off to the Day program every morning. I am tired just taking care of Dear Son! And to change diapers on top of all of that, that seemed enormous. The Vocational Counselor chimed in that most places had one aide to every ten to twelve adults as if that should make me think better of this place. I didn’t. And then I asked about the sheets, and why there weren’t any on the beds. She said it was housekeeping responsibility and pointed the workers out, as we walked down the long corridors. The only problem is that there weren’t any linens in sight. Anywhere. As we continued the tour, I was getting physically ill thinking about this place. I just wanted to sit down before I fainted. Fortunately, there were handrails. I couldn’t imagine Dear Son having to live here. It seemed so very cold and impersonal. I didn’t buy the fact that one person could take great care of seven kids/adults with these kinds of needs. I know I couldn’t.

We saw the day program which was more of the same. Thirty adults in a room, every wheelchair tilted back, all of them expressionless while three adults tried to conduct a lesson of sorts. I knew then that her comment about the visiting room for “families” was a lie because none of these kids knew what was going on so there’d be no reason for a special room for privacy. All of the adults in the wheelchairs, were all the same size, the same height and almost the same weight. I don’t think any of them exceeded 100 pounds. I didn’t think it seemed normal that none of them would have grown to a normal adult height and weight. I can see now that Dear Son would have been a giant of sorts. But he’s not a giant, he’s just a normal, healthy, adult teenager. As I looked around the room, I saw every adult, tilted back in their wheelchair, expressionless with nothing to live for. I imagined to myself that if Dear Son were here, he would be like that in less than six weeks. If you don’t nurture these children, they will die, first in spirit and then in the physical. I knew then that he would never come here. We walked back to her office and she told me about the waiting list for the program. I took the application and left, knowing I would never fill it out. I felt guilty for wasting paper.

I left the house, feeling physically ill. It was such a stressful day, seeing them like that. To make matters worse, I knew that there were residential facilities far worse than that. And here I was just looking for a day program! The whole experience just solidified what I always knew, that Dear Son would never, ever, step foot in a residential facility.

Later that day, I got Dear Son off the school bus. The bus aide asked me how the tour went. I described it to her and told her what I saw as Dear Son listened. After she left, I told Dear Son that I was just looking for a school type program for him after high school and that he was always going to live with me. Dear Son leaned over and gave me a lick (kiss) on the hand. It was a warm and sunny day, so we sat outside, talking and listening to the birdies, him in his wheelchair and myself in the rocker. As we sat there, we talked about the beautiful birdies and the songs they sing for him. While I talked to him, he continued lean his head over so I would kiss it, which is his way of giving me a kiss. Between that and licking my hand, he must have given me thirty kisses. You can’t tell me these kids don’t get it. As I came inside, I felt intense pride in what I do for him on a daily basis. His bed is always made, his sheets are fresh, he gets his meds on time and he starts and ends every day a happy kid. He is loved and he knows it. I am blessed. And it’s Dear Son who blesses me. He is my purpose. And when you live your life with the right purpose, you live a life with no regrets and a life of immense pleasure.


Jodi said...

Dear Son is a very fortunate young man to have you as his mother. I can relate to how you must have felt. I remember touring a high school special education classroom and leaving in tears. It's scary to think of what some families settle for.

Heather! said...

I felt sick just listening to your description of that program. I shudder to think that that is a 'better' program. Your guy is such a sweetheart. So glad he felt reassured that he will always have you.

akakarma said...

I was very moved by your post. Your son is indeed fortunate to have you. As a mom with a special needs child I know how much they bring into our lives too.

Anne said...

You are so right about purpose. Absolutely right.
Beautifully written. Beautifully lived.

zoe said...

And to that wonderful post I say AMEN!!

Poppy Q said...

Maybe Dream Mom you should send a copy of this post to the managers of the residential home, I think they should read why you have chosen not to take your loved son there.

You are doing such an awesome job in looking after and loving your boy. Wishing you a great mothers day - we would give you a big bunch of flowers if we lived closer (mothers day is this Sunday in NZ).

Jaime said...

Dream Mom~

Again you have reminded me of what counts. Again I am humbled. Thank You.

rebecca said...

I am happy that you decided to not send your son to a residential home whether it be for a day program or not. My special boy would never thrive in a place like that and I appreciate the insight you have given me to these places. Special children need so much love and caring it is a job for seven people to every one child. Not the other way around. I wish people would get the fact that special children thrive with extra attention and caring. I live in my mothers home and our extended family situation is wonderful for my son. He gets to interact with so many people on a daily basis at home and at school. I guess that he is fortunate to be in an excellent educational program at his school and to have so many people love and care for him. I could never imagine just dropping him off at a ficility and not visiting. People that do that to their children should not even be considered parents. It turns my stomach at the thought of not seeing or hearing my little guy everyday. Again thank you for such a wonderful blog. I cannot wait to hear more from you.

Anonymous said...

That was beautiful. Thank you for sharing.

Dream Mom said...

Thanks everyone for the nice comments.

To clarify, the residential and day program were separate programs although in this case, the day program was filled with all of the adults from the residential program.

A day program, is a program that special needs children attend typically after high school to gain employment or vocational skills or simply, in Dear Son's case, for enjoyment and recreation. It is good to get them in a program vs. staying at home the entire day once high school is over. A day program would allow Dear Son the social interaction and friendship he craves, with the love and security of living at home. He would be transported there just as if he were going to school and return home every evening.

Jo said...

A heart rending, beautiful post.

Emily said...

What a wonderful mother you are. People are right to say that your son is fortunate to have you. And I bet you would add that you are fortunate to have your son because of all that he gives you and teaches you. God bless you both!

Ashley said...

Dream Mom,

It must be hard to see such a dismal place, where other children are almost left behind. You will find a program that suits Dear Son, keep on looking. Have you looked into day programs where they come to your house and its provided from there?

That may be a good option for you.

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