Our new normal has been Friday nights at the ball field. Despite all the rain we have been getting, Friday nights at 6:00 PM or 8:00 PM seem to have some sort of agreement with mother nature and have been rain free. We have been proud of our son's stamina - late nights in 55 degree weather would have led to certain behaviors or an all out revolt years before. After the first inning, he may ask when they will be lining up...but he sticks with it and that is progress. The kids continue to be supportive and great and the monster hits are now a thing again. But....
But I also thought...could nothing have been meant by the comment? Is my momma bear instinct overreacting? I am on edge the entire game watching for a seizure or for behaviors that may suggest that something is wrong - in my defense, one time our boy climbed the outfield fence while he was playing right field because he had to go to the bathroom - his need was immediate and he didn't see a reason for disclosure - so chances are high that I was reading too much into it. Maybe that person was really was just providing a compliment.
Now, the season before we were at a softball game for our daughter. I was in the stands and just watching, not really engage in the parent conversation but listening (it was another Friday night = exhaustion). One of the parents was describing a kid in her daughter's class. She described him as odd and "you know, just really weird. He has that autistic look, you know that look". The parent receiving this comment looked horrified as she knew about our son. She kept giving her well-informed friend a look, like...the be quiet look. But this women kept going on and I just got up and walked away. For weeks I thought about that moment and how I should have handled it. I am not a confrontational person (almost to a fault some would say) but I felt bad that I did not say something. But she wasn't talking specifically about MY son so I felt conflicted. That experience was many months ago and I still think about it.
Many schools like to say that they "mainstream"the kids with disabilities. I follow up with...is it true inclusion? Is the child in a regular ed class and provided the appropriate supports? Is the curriculum adapted to their particular needs? In many cases, the answer is no. There are a lot of reasons - lack of money, lack of personnel and just a lack of understanding. Maybe that seems odd given that these are educators, but in my experience it was the case. Noting that my child walks the same halls 1.5 hours per week with regular ed students is not my interpretation of what mainstreaming should represent, but my son's IEP indicated otherwise. My son has been blessed with wonderful educators, but they work within a system and the system is stressed and doesn't always get it.
So in many cases, SN parents are in perpetual advocate mode. The system demands it. The disability demands it. And it may give us an edge for sure. But an oversensitive SN mom is just as unattractive as the ignorant comments we may overhear.
So in a time when more people understand the myriad of disabilities that exist, and we have entire months dedicated to bringing awareness to some, I think the lesson is that we all have some work to do. And I recognize that as a parent of someone with extraordinary needs, I need to work on myself and try to differentiate as best I can what is worth pursuing. A delicate balance for sure.
The it factor is larger than my son and I have a responsibility to educate folks on my own, in my own non-confrontational way. On the other hand, I need to ask my advocate self to take a rest some times and listen as a mom, not just an SN mom. The kid just had a good hit.