Team Hoyt

I guess I never posted this. I found it today on my computer when I was cleaning some stuff out.

You all know I work with kids who have disabilities, some of you even work with the same kids. I love these kids to death. No matter how much work there is to do or rules I have to follow that I don’t agree with, those kids are something else. They daily surpass the expectations that doctors have put on them… they will never walk… they won’t communicate… they wont have a “normal life.” What is normal anyways, I know my life isn’t and I am very happy. Do you know that some of the children were given life expectancies of only a few years? Some doctors wanted to put feeding tubes in the children and the parents refused, saying I will teach them to eat, and they did. The direct care staff may not see it, but the kids do things daily, that others never thought they would do. For some of my kids that I work with, they don’t get to see their parents everyday. For whatever reason, they have been placed outside the home. When I get the opportunity to tell people of some of the reasons these kids did not make it in the home, they are surprised. Even ones that work with them daily don’t realize what odds they were given. The staff do not realize, that these children are some of the most difficult to serve children in Illinois. They’ve gotten out of the house and lost in the community only to be picked up by police and taken to the hospital, but could do easily been hit by a car. Others from homes so abused and neglected but unable to speak about their experiences- maybe that is for the better. The work that our direct care staff do is something I admit I would have to work very hard to be good at. I am in the way when I work with the kids, they are the ones that deserve the credit, and I try to tell them as much as I can. These kids, are with us because their parents can’t do the work they do.

I’ve always loved kids. My cousins always teased that I tried to keep the baby that was being passed around family parties the longest. It wasn’t until a few years that the thought of having children, really started to freak me out. It was when I started working with the children, that I started to worry, what if my children have disabilities? Lately, I’ve been learning that, the kids at work have taught me more about living life than many other experiences in my life. I find myself amazed when the kids speak in full sentences or reading, feeding or dressing themselves and socializing with one another. Can I tell you that seeing a child start to take his first steps is quite amazing?! I am honored to be apart of it.

At church this weekend, the pastor talked about this family.

In this movie, they make reference to how the doctors said to institutionalize him. I understand that a lot of people have a very bad stigma against residential placements. Some think the children are abused or unhappy. Some think that parents are giving up their children and don’t care about them. I believe whole heartedly that our children are very happy and well taken care of. I quit my last job without having any source of income because I felt the agency was not providing services that the clients needed, and I was not going to be apart of it. Many have parents with kids at our placement see them often, and all believe that they will have the best possibly development because they are in residential placement. Some feel that placing them outside the home, is what being a better parent is meant. Although it is not for everyone, residential placement for many helps children have a better life. I know I would get arguments on that, but when you see children, completely non-verbal, interacting and playing toys or coloring or laughing together, how can you experience that in another setting? What parent of a disabled child with behaviors wants another kids to deal with in their home for play dates? I wish I could get it through to all the direct support staff that the parents notice all their work. They notice gains in their kids every time they see him. Yeah, they have problems and we address them, but more often they can not thank you guys enough.

If I am ever a parent, I want to be like this man. I want to love my children like God loves me. I will never be perfect and sinless like Jesus, but He does teach me daily that I can give a portion of that love that He gives me.

Brooke Greenberg

So tonight I watched a special on a young lady who has never grown past the size of a one year old. She is currently 16 years old and only 17 pounds! No doctor has any idea why this has happened, and she has defied so many odds. One time the doctor's found a tumor which they said was causing her to sleep. The family planned a funeral and perpared the family. For fourteen days she was asleep, until one day she woke up! The doctor's took her for an MRI and they could not find anything wrong, no more tumor. She is truly amazing. She has a wonderful family, and her state has given her resources to ensure that her family has the supports that they need. Here are some links to her story.

Brooke Link 1
Brooke Line 2

What upset me about this, is that they made a very distinct statement that she would not be nearly as loved or well developed if she was in a placement outside the home. This really upsets me. I may not love the children at my work as if they are mine, but I think it is pretty darn close. I'm not sure how much more some of the staff I work with and myself, can offer our children. I have kids that families haven't been to see them since the day they dropped them off. Some parents, that have moved on and come once a year. Some parents that I have no phone number to to get a hold of when their child needs something. Parents whose rights are terminated, and for good reason. They may not have the same kind of love, but I will make sure they have everything they need and that they know they are well loved.

It makes me mad that their state offers supports, and for my state, placement is pretty much the only thing that a parent has offered to them. It seems like they have nursing care whenever they want it! It even looked like the nurse went to school with her.

She had a beautiful family, with married parents, three sisters who care for her dearly. They include her in all family activities. My kids, rarely have married parents. Their siblings, some, have never seen where they live. Most do not celebrate Christmas, Mother's Day and Easter with their families. But they have staff that will celebrate with them, give them presents and make sure they are hugged beyond measure! (I love celebrating Thanksgiving with "my kids" when they don't go home.)

What I think it is, is that I am jealous. I'm jealous that "my kids" don't have everything this young lady has. Which is in no way, this young ladies fault. Perhaps my kids would grow more if at home, perhaps they would be loved more if with their parents, perhaps they shouldn't be in residential care.

But that isn't an option for them.

One time I was at a baby shower and a lady asked me what I did for a living. I told her that I worked with children with severe disabilities. She looked and me and said "I heard that children like that should have never even been born." I went on to tell her that all children have a purpose and I am glad that they are born. (Now I wish I had said something, like maybe people like you shouldn't have been born, but I know that is not what God would have said, and I would never mean that.)

What amazes me about Brooke and others is that their "disability" is really an "ability." Research is showing that what they learn from people that are classified as "not normal" is insight to health problems and how to cure and treat different things. For Brooke, it is research into aging.

I read somewhere about Down's Syndrome and how Cancer, of course I can't find it now. here's a similar article but not the one I wanted.

Either way, who says individual's created differently have no purpose on this earth, when they could help to find an answer to one of life's most devastating illness.