What Frustrates You Most About Your Special Needs Child?

 Well, technically the question in the packet of papers read “ What frustrates you most about your child?” The questions were typically brief and non-descript and this was the only question that made me pause, put down my pen and sigh. There was less than one line to complete my answer, not anywhere near enough enough space to tell my daughter’s story. 

  It was laughable really, that someone would ask such an open ended question that sounded so insensitive, at least to a Mom like me. The packet was specifically written for parents of kids with special needs, the question and answer process designed to know my child better.. but frustrates? Typically, when my kid misbehaves there is a  “wiring” issue involved in the behavior.. processing, impulsivity, fatigue etc. There is nothing about my daughter Zoe that “ frustrates”  me, as  in.. “ gets on my nerves, drives me crazy, or really *#**#$* with my day.,..yet really... now that you ask.. almost EVERYTHING about Zoe FRUSTRATES me.

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Cool Tools To Help You Tackle Your Day


It was way past bedtime, when emotions often run high. O was tossing and turning -  twisting her blankets into a furious ball and after one more kiss goodnight, putting on an audio book and one final threat from me, she asks “ What’s happening with Zoe and I right now? Why don’t we kiss and hug anymore? What’s going to happen when we grow up?” 

What’s happening with my girls is the age/ maturity gap is getting wider and O is growing up. What’s happening is it’s summer and it’s hot- and when hot, tired or hungry.. courtesy of their metabolic disorder.. my girls get lethally grumpy. What’s happening is Zoe doesn’t have all the social skills or real life experience to transition, process or adapt to the changing routine or emotional climate. It doesn’t matter why it’s happening really, what matters is it’s my job to fix it, or at least make it a little bit better.

At the end of each day, when the lights are low, the kitchen cleaned up- the computers shut down, the kids tucked in- the dogs curled up asleep and my husband and I finally sit down to enjoy relaxing into the quiet, I try to absorb the contented feeling of what looks like a normal life.   And then frantically get a game plan on how to make the next day better. 

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