I know people say this all of the time, but trust your instincts. You know your child better than anyone.
A parent doesn’t have to do it all alone! Develop a network of supports for your child. It benefits both parent and child.
Have respite care available if possible.
Allowing my daughter to attempt her own independence and not imposing my own standards on her choices. She was much more capable than I wanted to acknowledge.
When your child is no longer in a school setting is to make sure you know what your state and county services are willing and able to provide. Ensure SSI benefits are in place, have all of the estate documents settled, any programs, no matter how obscure, are looked at to see the best placement for your child’s happiness and well-being
Services and funding vary with areas and states. Be very honest about the needs and deficits of your child. I have found funding availability is based on deficits.
The child needs to be a part of the planning process. You do not have to accept the plan educators propose. Don’t underestimate your child.
visión general
síndrome de Cornelia de Lange (SCdL)
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