Depending on the asker of this question, the answer can often times be pretty loaded.
Sometimes I get tired of answering the question.
Not that the person asking isn’t usually well meaning and genuinely concerned, but it just gets old.
We answer our well meaning friend’s and family’s questions with as much energy and detail as we can muster even though when the question comes my first response is to ask, “Do you really want me to get into all that? This could take a while” or potentially, “Didn’t we just have this conversation?”
The answer, unless something truly exciting has changed, is often rehearsed (not for practicing, just from answering the question so much) and just rolls out our mouths.
Sometimes, with little acknowledgement to the words we are saying.
As special needs parents, we do not make it through a single day without the help and support of lots of people.
Our parents, family, friends that are better than some family, OT’s, PT’s, a slew of doctors, nurses, etc, etc.
These people care about children as if they were their own.
Now, before you thought this was going to be about me complaining about other people asking me the same question for the millionth time, let me start getting around to my point.
People ask and we answer. Sometimes the same answer we just gave three or four times that day.
We talk about the tests, the EEGs, the MRIs, the evaluations, check-ups, treatment plans, developmental goals, seizure counts, fall counts, hours slept, food intake and output.
Oh right! You asked me how my child was!
We get so wrapped up (rightly and easily) in caring for our child that sometimes, we the parent(s) of our special needs child; forget something crucial to the lives of that child and their lifelong well-being.
There’s a kid in that body we are taking care of.
They want to play, laugh, smile, and be acknowledged as another kid in midst of day that leads in so many other directions.
It is hard to do.
We can get pretty exhausted by the day to day caring for our children.
But if we forget that there’s a kid inside of them that desperately needs to be found and let out, we are exhausting ourselves for less than what our children deserve.
They may not ever live a “normal” life and we most certainly will not either, but we must strive to bring out their best kid.
If a venue improved its changing facilities, would you be more likely to visit it with your disabled child?