I’ve been an advocate of all things birth for a long time, but last week I had the realization that a new form of advocacy is taking shape in my life.  I am going to have to be an advocate for my child.  As I wade through the paperwork and enter the “system” to seek help, it is becoming clearer and clearer that I *must* stay on top of things, or risk getting lost (or worse).  I credit this to my friend, who answered my lamenting yesterday with the gentle suggestion that I may need to follow up more than I had realized.

It may seem obvious to some, as what are parents if not advocates for their children?  However, I have lived for some time in a nice bubble of security that several like-minded parents and I have created…where advocacy on behalf of our children is rarely necessary.  We spend a fair amount of time surrounded by people who love our family, who care deeply about what happens to us (and vice versa, of course) and who have a long-standing relationship with us.  This wonderful community we’ve created for ourselves allows me to forget that not everyone feels that way, which in turn leads to surprise when I reach out for help and am not immediately surrounded by comforting words, support and love.

Last week, I made another call to a different avenue of help for our situation, recognizing that although we are seeking an “official” diagnosis for the child, that will take months and we need help now.  I explained a bit of our situation, and my information was taken.  Then, silence….

On Friday, I made yet another call to another avenue.  This time, I was told up-front that there might not be the kind of help I’m seeking at this place.  What the woman was able to do, though, was pass along my information to other parents who had been where I was.  She also exuded compassion, especially when my voice trembled (as it so often does when discussing this).  It’s amazing how far a little compassion will go for someone who’s hurting.

Anyway, these calls and the resulting conversation with my friend helped me to see that, for right now at least, my child needs me (and I need me) to be the best advocate I can be by staying on top of things, making phone calls weekly if need be, finding that needle in the haystack that is right for us.  It also made me think about just how flawed the “system” is, when people are actively seeking help and must really, really work in order to get it.  It reminds me of a story I was told once:

She was home with her very active, very intense toddler during a particularly stressful day.  She felt herself getting to *that point* because she had no partner to turn over the child’s care to, nowhere to leave the child at that moment, no one to help, she did the only thing she could think of…she called the child abuse hotline.  She did the RIGHT thing, made the RIGHT call and what she got when she called was a busy signal.  A busy signal!  She kept calling, frantic to get some kind of support before she blew her top.  She spent several minutes trying to get through for help.  At some point, the absolute lunacy of the situation came to her and she giggled.  The very place that was designed to help was completely inaccessible in the time of need.

And so it goes.  Family seeks help from every avenue they can come up with, but the red tape, the process, takes time.  What about when time is the enemy?  Obviously, our situation is different from the one above, but it doesn’t change the fact that my child is suffering.  We have lost our way.  We need help, NOW.

And still, everywhere we turn, it seems to take forever.  So, although I can not fix our problems alone, I can fight for my child.  I can make phone calls, write letters, emails, whatever it takes.  I can search and search until we find the right fit for us, the help we need.  I can be a different kind of advocate.

 

 

For other posts on this, click here, here and here.

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