Monday, September 9, 2013

"Just Ask", They Say

I saw a Facebook post last week from a mom who has a teenage daughter with both Autism and Down Syndrome.  Like most of us parents of children with special needs, she was exhausted, depressed, and worn down.  She mentioned that she never got a break - never got to do anything by herself, never got even a moment to focus on herself.

This mom is wonderful.  She has devoted her life to her daughter, and has helped her daughter make progress academically when the school system gave up on her.  But she is a single parent, and she lives out in the country.  She has no job other than the difficult one of being a mother to her very special daughter.  And she really needs a break.  But when she posted that statement on Facebook, I was a little surprised by some of the responses.

Several well-meaning people said, "Just ask us if you need help.  We're more than willing to help."  But the mom couldn't do that and I understand completely.

When you have a child with very special needs - be they behavioral, emotional or medical - it's impossible to call in someone for help that although very well-meaning has no clue what it means to take care of your child.  And in the case of a child with significant medical needs, any 'helper' would need to be well-trained and well-versed in the particular medical situations your child faces.  And if we have to do the training, that's yet another burden to add to our already overflowing responsibilities.

So what do we parents of children with multiple and complex needs do?  If we are lucky, we can get some support through Medicaid waivers.  But even with waiver services, finding people who know sign-language, who understand positive behavioral supports, or are trach trained, for example, is extremely difficult.  What we do most often is rely on other parents in situations similar to our own.  We trade services, so to speak.  If you watch my child for a couple of hours, I'll watch yours.  But we're not really solving our problems.  The whole time we are away and relying on another parent that we know is just as worn out as we are, we feel guilty.  We rush our errands so we don't leave the other parent too long.  And we know that all we are doing is increasing each other's workloads and overall exhaustion.

I don't have a solution to this problem, but I did want the other mom to  know I do understand.  If any of you have any suggestions, please share them.

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