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After being told I would never be able to have children, I am now a stay-at-home Mommy to Maddie who happens to have Down Syndrome. I've been married 16 years to my best friend, having the time of my life. Thanks for stopping by and sharing in our little journey through life.

Wednesday, January 29, 2014

It's Not About Fixing Her

This is always a hard time of year...pre-enrollment.
The time of year you have to assess what the past year's achievements have been and what she might be accomplishing in the next 6-8 months.  

This year is more difficult than past years because I'm seeing the developmental gap widen.  
I think it's inevitable as she gets older that it happens, but I remember a time when I really thought we were tightening up that gap.  

I don't remember where I read this, but a mother with special needs kids wrote,
"It's not about fixing them.  
We have to focus, rather, on what we can do to best equip them with what they need to cope."

In my mind I know it's common sense to know that we will never "cure" Down Syndrome or Sensory Processing Disorder.  
She will always have these diagnoses.
But sometimes, in my heart, I cling to the hope that we can fix her.
We can't, however, fix her.
We can only equip her to cope.

In practical terms, it means we can't fix her teeth grinding.
We can't fix her nonsensical vocalizations.
We can't fix her sleep cycles.
We can't fix the fact she is not ready to be potty trained.
We can't fix her low muscle tone.
We can't fix her inability to communicate reciprocally.
Whatever it is in her brain that causes these "symptoms" will continue to be there.  
The symptoms may change, but the problem remains. 

It's not that these things will not be improved and even conquered through therapy...
that is, after all, the goal.
It's the mindset that I must be careful to control.
If you go into therapy with the mindset of "fixing her" you lose sight of who she is.
She will always have Sensory Processing Disorder, it's part of who she is.
Therapy is just a tool to help her cope.
It's a way of getting around the problem.

Parenting a child with special needs is about creative problem-solving.
What can I give her that will help her cope?
What experiences will best help her succeed?
What does her 'best life' look like and how can we achieve that?

In answering these questions, it's always a tricky balance of pushing the limits and ensuring success.
That's why choosing the best environment for her education is such a daunting task. 

Lately I've been contemplating homeschooling...scary, uncharted territory but then again, so is life with special needs!  


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