I know it isn’t everyone’s reality, but dealing with a special needs family member isn’t easy. Our normal (and don’t try to be politically correct and say “what is normal really?” because there is your life and then there is ours)…our normal is a freak show. Living with Adam’s autism is a life sentence for me and my husband and to an extent for Logan. We LOVE him and are so very proud of him and all that he has accomplished but it is very easy to resent the autism sometimes…this “thing” that has him in it’s clutches, that makes the simplest thing incredibly difficult. Since we alone really know how to care for him, no matter how independent he becomes, we are responsible for making sure he’s okay and that others around him are okay as well. So when I head that United Airlines kicked off a mother, her son and her 16 year old autistic daughter because the girl was disruptive, I have to ask, should they have just rented a car and take the longest road trip ever to spare everyone else from her noises? The passengers said she was no more disruptive than a crying baby and many came to the defense of the family but while happy to take the woman’s airfare, the airline was not happy to fly them to their destination.
We are okay if someone is blind or deaf and we are very concerned about people with scent or peanut allergies but God help you if your child looks “normal” and acts weird and makes weird sounds because unlike your children, they can’t always verbally express themselves. Let me tell you what this woman had to go through to get this child on the plane and to their destination. She most likely had to put a series of photos or pictures together in a social story* a few weeks in advance to prepare her for travel. If she is noise sensitive she probably had to get all the contraptions to help with that (ipod/ipad, headphones, medication, earplugs, gum if her child is able to chew gum properly. maybe a weighted vest or blanket* or something to help with the anxiety of the teen years, flying, crowds etc., ) and then try and think of a way she and her son could help control her if, or when she reacted to things they couldn’t control like lights, smells, sounds.
Of course you can easily say well then she shouldn’t fly but then what if she was on her way to a medical appointment, or a funeral? Sometimes we weirdo families have to fly. Let me assure you that before we fly, or go to a movie, or go to a store to buy toilet paper, if we absolutely have to take our children with us, we spend a lot of time preparing them for how they should behave in public. In a round about way, we ask them to put their autism on hold just so that other people would not be uncomfortable by their presence. My son is 15 and 6 feet tall and with puberty came this incredible energy where he just wants to sing out loud and sometimes dance and with the long arms and legs he’s inherited from his father, he sometimes looks like he’s having some kind of fit. So, before we go anywhere, my once very zen kid who has less control of his body now that he is in puberty, has to be told that he has to keep his arms at his side and keep his happiness in check and not be too loud because he’s a big guy and people can be a little scared or intimidated by him because they don’t know he has autism. I tell my child how to behave in public so as not to disrupt other people because every parent of every autistic child is very aware that the world should not stop just for our kids and that it is our responsibility to make sure they don’t cause you any trouble. We all do it, and I know this woman did all she could to prepare her child for travel and I also know that like all of us, she felt that sick walking-on-egg-shells feeling because you can do all the preparation in the world and it could all go down the toilet anyway.
Last week, Adam and I did the Big Bike Challenge for charity for the Heart and Stroke Foundation. It was a lot of fun for him and he and the team we rode with had a blast. While we were waiting to get on the bike, the driver came to me and said he noticed Adam was jumping and screeching off to the side earlier and he wanted to know if he would be okay on the bike. I assured him politely that he was going to be fine without getting into detail that Adam is an incredible athlete and that his legs were going to be the ones to really power the bike. While I understood why he asked, I was a little irritated. Would I put my son on a bike with 8 other people if I didn’t think he could handle it? Would I jeopardize his or our safety? I am NOT about including Adam into social events at any cost. If Adam had not been in puberty and was the zen 12 year old he used to be, he would not have shown his excitement by jumping and screeching in excitement and anticipation of his ride. To the driver he looked odd, behaved differently from the rest of us and is big and tall so obviously it was questionable for him to be on what is literally a massive bike on 14 training wheels. It doesn’t matter anymore anyway. We helped raise money for a good cause and Adam had a great time and is looking forward to doing something like that again but until he is publicly zen again, I’m doubtful that we will.
So far, we have been lucky. The best part of our vacations is the airport and the plane ride for Adam. He loves aviation. Hell, we’ve even been complimented on how “well behaved” he was on the flight when people figured out he had special needs. That is a strange compliment to receive – I still don’t know how to take that. But the last time we traveled with him was 2 years ago before the puberty demon reared it’s ugly head. Who knows what he will do on a flight now that he is in full out puberty? But I will do due diligence and call the airline and request the bulkhead seats and give Adam the window and pack the ipad and the ipod and give him his magnesium and his 5HTP supplements to help with any anxiety he may have that I can’t see and I will sit wide awake and mindful of him the entire flight because that is what we parents of autistic kids do.
We have regularly used United Airlines when flying in the US but of course Adam was quiet aka “well behaved” the entire trip but now that he is dealing with puberty and so much is unknown and unpredictable with him now, we will not be flying with them from this point on. Hopefully we will not be in this family’s situation and we will never be asked to disembark a flight but nothing is impossible. If nothing else, I want you to know that we parents of autistic kids aren’t selfish or inconsiderate – far from. We do keep you all in mind as well as our families but it is damn hard to control the unpredictable. We do the best we can with what we have and we do not rest … we keep trying and changing gears for our children and for you. It would be nice if the airline we pay to get us to our destination were staffed with attendants who could help us out if things were a little difficult. Next time you go on a flight remember all you had to do was set your alarm, wake up, have a coffee, grab your bags and get to the airport …easy pickings from point A to B. Parents of autistic children have to plan weeks in advance and when you recline your seat and go to sleep,know that we are awake, vigilant over our children because we are trying to make the flight as comfortable for you, as well as our children. Bon Voyage everyone. Maybe we will be heading to the same destination one day. However if you are on United Airlines, I won’t be seeing you.
* social story – a story with photos or pictures read and shown to autistic persons to help them know what to expect in a situation
*Weighted vest or blanket – just as it sounds, a heavy vest or blanket used on autistic persons and dogs to help with the physical experience of anxiety.