The Myth of High Functioning

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Our kids are put into ever shrinking groups, like concentric circles or something -

disability

multiple disabilities

Angelman Syndrome

It hurts to have the “Angelman Syndrome” circle split even smaller.  Maddie is often called “high functioning.” 

What does that mean?  I think that for most, it means she is doing better than expected per the prognosis, or that per a random pool of kids with AS, Maddie would be, skill-wise, near the top. 

It should be a good thing I guess, but if you’re high, than someone else must be low.  And that’s not fair.  Everyone loves to compare and contrast, and I understand that.  Each individual has many strengths and deficits. 

But to me, part of it is that ”high functioning”  negates all the accomplishments and work behind them by saying “oh, she’s high functioning.”  Maddie has put in A LOT of work to get where she is.  So have I.  So have her siblings and friends and support staff.  She’s not just doing great all by herself.  Its been work to get here and it continues to be work to maintain.  Don’t dismiss it by waving it off as “high functioning”.

And that doesn’t mean that if your child is considered low that you are not working at it.  Not at all.

We found early on some ABA-ish training that has worked extremely well for us so far.  Its taught Maddie AND ME the basic foundation for mental focus and attention, physically calm and prepared, repetition and assessment. 

http://mcdj.wordpress.com/2007/12/31/what-worked-for-us/  (my thoughts on floortime and ABA as done by an untrained parent).
 

Best wishes to everyone.  Label yourself loving and loved.  If you have that, the rest don’t really matter.

 

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Filed under Angelman Syndrome, UBE3A, advocacy, disability, education, inspirational

Tags: ABA, ABA-ish, Angelman Syndrome, disabilities, disabled, Emilie, floor-time, floortime, high functioning, Maddie, maintain, multiple disabilities, skills, UBE3A