Defining Moments

What defines us?  Having children, the processes of raising babies into adults defines a parent.  A job title can define a person like an Engineer, Teacher, Doctor or Truck Driver.  A person’s citizenship can define them, from The Netherlands makes you Dutch or from Canada makes you Canadian.  Even the state you spent most of your upbringing in can define you, From Colorado makes you a Coloradoan, from Connecticut makes you, well . . .  what does that make you? Connectikitten?

What about a disorder, can that define you?  If you have Diabetes would you define yourself as a Diabetic?  Would you introduce yourself as, ‘Sally the Diabetic’?   Most likely not.  When in the appropriate setting, at the doctor’s office or a conference for Diabetes or if you were an expert in the field and also a sufferer, then it would be appropriate.  What would your family introduce themselves as?  “Hi, I’m the son of Diabetic” or “Hi, I’m the mother of a Sensational child”.  Seems rather odd.

When you are, by definition, a parent and your child, by diagnosis, is Sensational this is who you become.  Everywhere you go you are the parent of a child . . . with SPD.  This is true for other diagnosis, Autism, Asperger’s Syndrome, Down’s syndrome, Cerebral Palsy to name a few.  The outings you plan, the foods you buy, the play dates you make and the schools you choose all revolve around you being the parent of a child with _________.

Where is the line, or even when did we cross the line, between individuals and diagnosis?  Is the diagnosis our defining moment.  When we hear it or suspect it do we suddenly become someone else?  As a parent we take on the future, whatever comes with it, the good the bad and the sensory.  Learning to be a parent is an on the job never ending process.  Babies rock our worlds with their needs, learning the cries the routines and how to not smother them with our worries and concerns.  Toddlers give us new chapters on choking hazards, up-right mobility and helping them understand the world.  It is the next 16-30+ years that we start to venture into our subcategories of parenthood.  Some breeze through to preteen before hitting bumps, others make it all the way to early adult hood and others somehow are unscathed (but I have not met any yet!). Others start early browsing the book store section, “children with special needs”.

Those subcategories of parents who seek each other out, have shelves filled with books from Greenspan, Miller, Kranowitz and Attwood (just to name a very few),we define ourselves by the terms in these books.  We live by the words we read and hear at conferences.  We know what a 504 is and an IEP and we know the difference.  We wake up hopeful, and at times, go to bed feeling defeated, only to wake again and face the world head-on again.  Our children have their struggles and we have ours but they are one.

Our definitions and diagnoses makes life outside these terms and needs and planning and worries and concerns almost impossible to carry on a conversation that excludes the Sensory world.  We go to dinner and a movie with our spouse and always, always, have our sensory glasses on.  There are moments I’d like to go blind, just for a moment.

Taking off those glasses and letting our guard down can be catastrophic.  When a parent of a child who needs extra compassion and understanding lets those less educated dictate the rules the child will suffer.  Because we define our lives by our childrens’ condition we are on all the time, we find the opportunities to education and inform and advocate.  We learn from our own mistakes and raise our expectations of those who educate and care for our developing children.

I had a moment when I thought I could stop defining myself as a parent of a child with SPD.  I thought he could speak for himself and I could step down from my perch high up trying to protect him.  It was safe for awhile.  My definement paid off for the summer, I was in charge and I had set up a safety net that spanned nearly 4 months and 7 countries.  What I learned was I had not planned far enough ahead and set up the safety net beyond that, when school started.  And just as I was getting used to having those sensory glasses off, I ran straight into danger.  Both my child and I are bruised and battered.  It will take time to heal and our wounds from last year are torn open wide, I feel like I can’t get enough Band-Aids!

I was a fool to think this definition can be removed like your name tag at back to school night, peel it off and you are just mom again.  My hero cape is always on; torn and tattered, it is there.  My book list grows, my vocabulary expands and my knowledge is just behind the experts.

I am, by definition, a parent of a child with SPD.