There are certain Special Needs parents and caregivers who seem to be able to find each other anywhere.
Like members of a secret Order, we recognize the signs and spot each other from across parks, in restaurants, in the workplace, or at birthday parties.
These particular caregivers have children with “invisible” disabilities, the ones that are not immediately apparent to the uninitiated public. When others see these children, they may be quick to pass judgment on the parent. “Why can’t you manage your child?” they ask, and then generally launch into a diatribe about the state of parenting today and what happened or never happened in “their day.”
But, we, the experienced, can recognize you a mile away. We see the stress lines on your face. We feel your anxiety rise along with the volume level of your child’s voice. The apologetic smile that you’ve grown accustomed to displaying when you’re at your wits’ ends. The large bag you’re always toting around with distractions for your child, containing books, Legos, crayons, drawing books, a tablet PC, stress balls, an egg-timer, or all of the above.
According to the Invisible Disabilities Association (InvisibleDisabilities.org)
The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions, learning differences and mental disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.
This past summer, I attended an outdoor barbecue and seated myself at the same table as a woman I’d just met. We started talking to each other when we discovered that our daughters shared the same name. As I observed her Alexis, mine was inside the house the entire time, not wanting to mingle with anyone. Hers would not leave her side. Within minutes into our conversation, we realized that they shared more than just a name. I observed that her daughter was very shy and withdrawn and didn’t want to play with anyone but the host’s daughter, her school friend. But this was not a normal type of shyness. There were so many children there, including my younger son, playing and interacting with other unfamiliar children.
I asked my new acquaintance if her daughter was on an IEP. Sure enough, this started a whole other series of conversation regarding our two girls. It turned out that they were alike in too many different ways. Both had social and communication deficits, both were very bright, but quite withdrawn. Seeing her daughter not wanting to play with anyone else but her one friend, reminded me of my daughter, who has decided not to make any new friends since her two best friends moved with their family to Colorado five years ago.
Our conversation continued for another two hours until it was time to leave. She seemed relieved to be speaking to me, because I understood what she and her daughter were going through. She didn’t have to go into uncomfortable explanations to tell me what her daughter’s issues were, as we would with people who just don’t understand.
Whenever anyone asks me what my daughter has, I just say “All kinds of things.” That puzzles them for a while until I start giving them the list – hearing loss, language delays, social and communication problems, learning disabilities, etc.
Almost always, this is met by “Really? She looks so normal.”
I always tell them that I’m fully aware of that and that she is normal; just a bit atypical.