My son moved into a residential pediatric 15-bed intermediate nursing facility on August 12, 2011, which was 112 days ago. He’s twelve years old.
Yesterday evening I received an automated phone call from his school saying he was absent with no note or phone call, so I called the facility to see why he didn’t go to school. A nurse said he was kept at the facility because the orthotist came to see him for his AFOs. I became upset as I was not told he was coming and had made it abundantly clear that I was to be there for this visit.
The administrator emailed me about an hour later apologizing for the oversight, and she provided me with the orthotist’s first name and phone number. I left messages for the orthotist early this morning who left the office early today. I do not know what he did with my son, and I do not know what he is planning on making for my son.
Yesterday was my only day off of work this week (holiday retail is keeping me lowly employed), and I could have been there or visiting with my son, but I thought he was in school.
Later yesterday evening, I heard this story on public radio: http://thestory.org/archive/the_story_120111_full_show.mp3/view
About a third of the way through the program is Kathy Dygas’ story of trying to survive on welfare cuts in Detroit while caring for her disabled son and daughter. Most people that would ever read this blog can understand her story.
Today, I am left thinking about my options and my son’s options, which I think about all the time. The people around me tell me I cannot take care of my son and work, but having my son taken care of by other people is leaving me anxious and unhappy. My son does not receive SSI right now, but the state would like me to apply so that all but fifty dollars a month could go towards his bill for being at the facility. SSI would be less than $700.00 a month if he were to qualify for it.
My efforts at my son’s school got another aide hired for the classroom, and the head of special education tells me it is a permanent position, but the teacher says the nurse doesn’t want to train the new aide because the aide is being hired on a weekly basis. They don’t know who will show up on Monday morning each week, or if anyone will show up. The nurse is not housed on the campus but works out of the district’s offices and oversees many schools. And she is brand new.
This morning I received an apologetic phone call from the school counselor who got the dates wrong on my son’s upcoming annual IEP. This is the same person who failed to invite all pertinent people to the IEP meeting to begin with, and then she invited them on the wrong day.
The most difficult part of all of this is that my son looks good. One staff member noticed my son likes to lay with a blanket over his head, so she puts the blanket over his head when he curls up to try and sleep. I gasp and she tells me that my son is perfect and to stop worrying. As I keep dropping more weight and find my food aversions growing, I know I cannot keep going on like this… waiting for the accident or error to occur that is life-threatening. It’s getting harder to drop him off after visits and more heart-breaking as time goes on.
One nurse said to me that maybe I’m not cut out for having my son live there. Well, I know that, but what are the options? There are none.
3 comments:
Does he still spend some time with the other mobile girl at the facility?
It's hard. I don't know what to say except that I recognize that it's so hard.
Thinking of you and glad to read your update.
Gimky,
Thank you for commenting. The other mobile child does not get put down on the area rug much anymore because he bites and my son is too mobile. They put my son down when he is fussy, he usually falls asleep, and the staff fails to watch closely. My son wakes up and frequently ends up off the rug, so they only put him down when he fusses too much. Also, they feed him in his wheelchair every four hours, so it is easier to keep him in the chair or in his smaller bed. My son is not moving around as much as he used to and will need muscle lengthening surgery so he can be in a standing program as his legs and feet are much worse just in the time he's been at the facility and at his new school that leaves all the kids in their chairs. At the ISP meeting for the facility, they wanted a goal for my son to be that he spends more time in his wheelchair especially when he gets a new one that is on order. Sadly, or some will say for the better, my son is getting used to not moving around as much. He tolerates his wheelchair now much, much more than he used to. Some will say it is inevitable and even a bonus, but I am very discouraged by this as his mother.
Maybe he needs a bigger rug...? Or what does it even matter if he's off the rug?
There are so many people out there hurting for hands-on experience even without pay. Could the facility offer internships and try to tap into that group?
There are university grads who are at my son's school right now. For lack of other work or to supplement whatever work they do have, these young grads are on the playground, everyday, and at lunch, helping those like my son engage with other kids and making sure that there's no bullying, etc. I'm sure it wasn't exactly a cinch to organize though and there are insurance worries....
Or would they even allow you to find some PT or OT student, who'd be willing to take on a 'project' with your son for some regular floor time? It's just so sad and crazy to think that without something as simple as more time on the floor, that he could end up with surgery!
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