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I am a parent of 10 year olds special needs twins (boy&girl). There is no official diagnosis as of yet. Early on it was thought that both possibly suffered from cerebral palsy but it was later ruled out. Recently it was thought that they had a genetic disorder. After testing there were negative results. They kiddos are both non verbal and suffer extreme global delays. Both can walk but communication is all non verbal. The issue at this point is that they have grown in to 10 year old kids and giving them the care that they need has become very difficult and stressful. We also have a 2 year old daughter that shows no disabilities at all. It's also becoming a safety issue. It is to the point that we are beginning to do research on possible living facilities that can offer what we can not at home. Do such places exist? Where do I even begin? Thank you for any help on this very difficult issue.
I assume your children are in a special school program. Have you talked with the school psychologist about this?
I have a son with Down syndrome who is non-verbal and lower functioning who is 29 years old, mostly homeschooled and we are struggling to find an appropriate day/residential. He has tried 3 day programs......... So, I am telling you this to let you know that I some what understand your situation. When he was younger, we considered out-of-home placement but the cost was forbidding.
I am not sure what your financial position is but have you contacted your state social services office to see if you would qualify for any services through the state? A private placement would be very expensive.
With the experiences I had with school districts, I probably wouldn't even bother discussing it with them. They always liked to gossip about everything so everyone knew our business. Yes, I know about the privacy laws - a joke.
Are you connected to any parent groups for children with special needs? They might have ideas.
I am guessing you are feeling very uncomfortable about discussing this with others. I totally understand. My son's case manager doesn't think he should move out but I am older and exhausted from his care.
If you aren't familiar with how to locate resources, if you'll tell me your state or send me a private message with your state in it, I'll search and see what resources might be out there.
Call social services in your state and see what they have to offer. Many states have waiting lists for services but crisis funding can be available. I am Kansas so am really only familiar with this state.
In Kansas, we have two state facilities for people with developmental disabilities, one for the mentally ill. They are "updated", not the daunting institutions of yesterday. There is also the possibility of the children going into foster care.
I assume your children are in a special school program. Have you talked with the school psychologist about this?
I have a son with Down syndrome who is non-verbal and lower functioning who is 29 years old, mostly homeschooled and we are struggling to find an appropriate day/residential. He has tried 3 day programs......... So, I am telling you this to let you know that I some what understand your situation. When he was younger, we considered out-of-home placement but the cost was forbidding.
I am not sure what your financial position is but have you contacted your state social services office to see if you would qualify for any services through the state? A private placement would be very expensive.
With the experiences I had with school districts, I probably wouldn't even bother discussing it with them. They always liked to gossip about everything so everyone knew our business. Yes, I know about the privacy laws - a joke.
Are you connected to any parent groups for children with special needs? They might have ideas.
I am guessing you are feeling very uncomfortable about discussing this with others. I totally understand. My son's case manager doesn't think he should move out but I am older and exhausted from his care.
If you aren't familiar with how to locate resources, if you'll tell me your state or send me a private message with your state in it, I'll search and see what resources might be out there.
Call social services in your state and see what they have to offer. Many states have waiting lists for services but crisis funding can be available. I am Kansas so am really only familiar with this state.
In Kansas, we have two state facilities for people with developmental disabilities, one for the mentally ill. They are "updated", not the daunting institutions of yesterday. There is also the possibility of the children going into foster care.
We reside in Oklahoma and we hare having trouble just finding the right facilities for such a need.
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