Why special needs families stay in fight mode. | Support for Special Needs
In a recent story, a private club with a swimming pool will not allow a child with autism to use a floatation vest causing, obviously, the family not to join the club. Officials at the club say they don’t allow anyone to use floatation devices of any kind, and “if an exception was made for one, an exception would have to be made for all, and that was not possible.” Why is it hard for the pool board to say yes to this family and no to others who many complain?
Every. Single. Day. There is a reminder of how families with a child (or more) with differences has to fight and sometimes for the simplest of things, like the right to attend events and the right to live in the community and productive.
During the time that my kids were at their local public school they were really sick. My son was on hemodialysis (at the hospital three days a week) and they both had kidney transplants at age eight. They were out for recoveries from multiple surgeries, procedures and illnesses connected to their health condition. Many times I had to run in and get the kids right before the end of the day. Technically I should have picked them up 45 minutes before dismissal. But because they also wanted the kids to be able to be in school as much as possible given their delays (and I wanted to be at work as much as possible), they let me pick them up right before dismissal, sometimes by just a few minutes. Seeing me approach the door, the staff in the front office often called for the kids before I opened the office door. They made an exception. Because it was best for the kids and for the family. I’m nothing special, they would have done it for any family in our situation.
Exceptions sometimes need to be made. We’re a world of different people and different situations and some people need exceptions.
We need extra time to arrive and leave and sometimes we need extra space. We need patience and understanding by people in front of us, behind us, next to us. We need a little bit of a break with things that make life easier like a better parking space, a fast lane at the E.R., a frequent flyer program at our pharmacy. We sometimes enjoy the perks of an attraction open just for us (free!) to help with the crowds making it the only way we could/would attend. We need people to help clean up the aisle in the store and not give us “the look” when our day falls apart (sometimes a lot of days in a row). We need the exception of floaties and harnesses without judgement, we need to help our kids by keeping them in strollers past the “acceptable” age. We appreciate the financial breaks we get and it makes it possible for us to do other things like donate to causes or to buy equipment our kids need to function at school and home. We need people to accept our kids and work with us to help build friendships and social skills.
We need exceptions all the time.
I think people wonder why special needs parents stay in fighting mode. It’s because if we let our guard down even for a day, we miss something. Sometimes it’s something big. Or something as simple as our family getting to swim together in a community pool with our son safer by use of a floating vest. Our “fighting” isn’t fighting as much as it is just doing what we do. Or doing what we have to do.
To me, this kind of “fighting” doesn’t even feel like fighting at all. It feels normal.