Having a special needs child is challenging for so many reasons, but having a special needs child that doesn’t look like a special needs child can make things a little more complicated.

One of the hardest days for me, emotionally, since Ella’s birth was the day I went to Town Hall and picked up her handicap parking permit. A handicap permit that has no expiration date. I don’t know why it hit me so hard that day, but the fact that it was blue, not red, sent me on a rollercoaster of emotions. She was two and a half. I remember thinking, we don’t even know what’s wrong with her. How do we know she will need this forever? Obviously now I realize just because she has it, doesn’t mean we will forever need it. That day though, I believed it, and it rocked my world.

To the public, a large part of the time, Ella looks like a normally abled child, who most assume behaves as such. She is extremely small for her age so people often think she is younger than five, and don’t even question why she is still riding around in a stroller or being held. Only when we are out, and she has one of her breakdowns, do people begin to wonder what’s going on.

Ella has the most inviting smile and truly is obsessed with all people. Young and old folks alike wave to her alllllll the time. She never waves back. Ever. People come up to her in the stroller or shopping cart and say hi. They ask her questions. Only once has she ever said hi back. She usually just cracks up or smiles, leaving me to tell the kind people who want to engage with her that she is shy. If CJ is with me he will sometimes add that she has special needs, hoping they will walk away. Unlike his sister he is very anti social and would prefer everyone leave us alone.

Most people truly are kind, but there are also ignorant people out there who like to run their mouths and let their opinions be known. Sadly, we have seen more of that than we care to admit. We have gotten dirty looks as we exit our car with Ella from the handicap spot, which we try not to use if possible. We have heard people say things about her behavior and our ability to control it during meltdowns, and we have been questioned extensively at places where her disabilities would exclude her from participating, and admission fees were being waved.

One of the most surprising places we faced serious push back was Disney World. While we had no trouble initially getting the handicap sticker for the stroller and disability pass, we got questioned almost everywhere we went. We were constantly being told we couldn’t be in the handicap line and when boarding the bus the drivers were attempting to let on wheelchairs and scooters before us even though we were first in line. It also felt as though every time we went through a fast pass line, with our handicap approved stroller, at least half a dozen people would tell us we had to leave the stroller behind. I can’t tell you how many times we showed them the wheelchair sticker and kept walking, trying to keep the peace. Our experience at Disney was truly disappointing when it came to the disability pass. (I will save all those juicy details for a different post. There is so much more that happened.)

It can’t go without saying that there are people who still do the right thing. One of them I will never forget was our ticket agent at Orlando Airport. We had a late flight, the kids were tired, and we were sitting waiting to board. I went up to the counter and told the agent our daughter was handicap. I wanted her to know so she didn’t become a thing when we came up at first boarding call. She was so sweet and assured me it wasn’t going to be a problem. Finally they called passengers who need special assistance. We went to the gate and a father came running up to me, grabbed my arm and said, “They didn’t call children. They called passengers who need special assistance. You can’t get in line yet.” I turned and looked at the ticket agent, she gave me a little nod almost as if she were giving me permission to throat punch him, and waved us over. I then looked at this man and replied, “My daughter does need special assistance and trust me, I would prefer to not be in this line. Thanks for minding your own business.” He said nothing more and we walked on the plane.

There will always be someone who thinks they know better than us, more than us, and who will constantly offer unsolicited advice. Some people care and just want to help, some people are genuinely nice, and some people just don’t know when to mind their own damn business.