I’ve written about the word disability in the past and how I’ve not felt it was an apt word to describe Nicholas. I don’t think I’ve written about the label “special needs”. I’ve resisted this one in the past as well.
The first time I heard it used to reference Nicholas is when a mother I met at a play group was asking me about Nicks’s leg and she said “My daughter Ann’s special needs too”. I was taken aback. I wasn’t insulted but I simply had not considered Nicholas a speical needs kid. At that time the only special thing his leg required was a shoe lift. That didn’t seem so special to me.
At the same play group another mother was starring at Nicks shoe and very loudly said “Wow, that kid is wearing moon boots”. She somehow failed to notice that only one shoe had a lift! I wanted to scream! I wanted to punch her! What I actually did was nothing. The “special needs mom” changed the subject and over five years later it sill bothers me. Mostly because I didn’t say anything! I froze.
Thankfully I never saw the rude mom again! She really was aweful beyond the moon boots comment. Still I was left with more to consider. Was Nicholas a special needs kid? Was it just another label? What did it mean?
Physical Disabilities by Lynn Moore
Physical disabilities include a wide variety of conditions that affect a child’s movement or ability to accomplish some physical task. A physical disability might be a condition that is addressed with physical therapy or some assistive device, or it can be serious enough to be life-threatening. Defining Special Needs at Netplaces.com
I guess a shoe lift isan assistive device. Sometimes Nicholas also needs an AFO (brace on his ankle). Plus the external fixator he is wearing right now looks pretty darn special to me…
Terri Mauro on about.con writes quite well on the topic and points out the functionality of the term right away. One Term, Many Definitions:
“Special Needs” is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.
Although every special-needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. They have to be.
“flexible, compassionate, stubborn and resilient”… If that is how a special needs mom is defined sigh me up because I hope I’ve got those qualities down! When you have to face surgeries and stares from strangers and your sometimes suffering child you need have those qualities just to get through the day! Moms of special needs kids have to hold it all together. We also have to know how to ask for help but that’s another blog post!
You can read the entire article here:Special Needs About.com
So where does all this leave my boy? Probably the same as he has always been. Eight surgeries in as many years, regular two hour road trips to The International Center for Limb Lengthening probably speak for themselves. It’s been a pretty special journey and Nicholas is beyond special and beyond my wildest dreams of what a son could be!
And if I had any doubt about wether I am in fact a special needs mom here’s some evidence… Plus Love That Max is a great blog by another special needs mom. As far as labels go I sure am in good company!