Not knowing how to title this blog, I just started writing. I needed to reflect, digest, and process this unique experience of being able to see things from a parent perspective with a child with autism and why the work we do is so desperately needed!
Of course, I have worked with many neuro diverse clients in the past and consider myself relatively well informed and trained, however, I never really experienced what parents have to go through. I never really understood and could relate to what Rupert Isaacson wrote about the shame they felt as parent, the anger when society did not accept the needs of their son. I could imagine and emphasize but really there was no true understanding.
I was able to get a little glimpse of that experience a couple days ago while traveling with my teenage daughter Catalina and a young man on the spectrum. The very beneficial and nice thing was, that his parents educated him well and he could easily self- advocate and function, making it possible for me to understand what he needed and what he was feeling. Catalina was amazed by the pure honesty this young man displayed and a very simple approach to every- day life challenges. He made sure he followed his needs, and Catalina decided that was a fascinating ability. The two of them got along very well, and the trip started of very nice and relaxing until we got to an overcrowded Dallas airport, with immigration lines in multiple direction, having folks guess which way to go, angry tired passengers yelling at overworked and understaffed airline assistants. Feeling the tension build in both my companions, I tried to keep a cool and happy demeanor, but inside, realizing there was no way either one of them would make it without a meltdown. Not the one to cut lines, or ask for favors, I swallowed my pride, walked up the an assistant and described my situation- a teen with severe anxiety, and an autistic young man both not quite ready for chaos like this.
The lady said ‘yes, yes, will help you in a second’ and walked away- leaving me powerless, feeling fooled (since I would probably never see her again) and kind of at a loss how to deal with this situation for these suffering young folks traveling with me and trusting me to take care of their needs. Thankfully, the lady appeared back like a guardian angel, guiding us passed the chaos, cutting our wait time from about three hours to ten minutes- we made it with smiles on our faces (and only a slight feeling of guilt on my part, never having cut a line in my life).
Everything was well, we had our tickets for the last flight, made it to the gate, remembering Rupert’s guidelines, I made sure the kiddos were fed well, and we rested at the gate ready to be home soon.
Little did I know…
The day before, there were over 200 flight cancellations and angry passengers were trying to get home; long lines, overheated gate areas, yet again understaffed counters were crowded, with emotions running high. Waiting in line to get our seat assignments, I realized my one friend pacing up and down to process and deal with the crowds, while my teen daughter suddenly changed facial expression to a pale scared looking young girl, not keeping an eye on our friend with autism. I called her over explaining how I needed her support at this time, only to be shown a picture of two of her classmate’s car under a semi-truck and the explanation that they did not survive. I hugged her tight, while watching out for everything else going on, realizing at that moment they put us on a stand- by list for the flight. Catalina handled it well, but was in no condition to help with anything at that point, and the angry crowd and noise was getting to her just like to everybody else. Stand-by was not an option, there was no way, the two teens could hang around this environment much longer- and to be honest, I was about done as well.
After six gate changes, trying to make it sound like an adventure and fun to keep the spirit as ‘up’ as humanly possible, the attendance finally told me, even with our special needs, there was no way we would get on, or even onto the next one 9 at night- most likely having to spend the night. When she gave me that message, she did not even look up from her computer screen and I know exactly why- it would have been too personal, she would have felt bad and maybe even have to care…sure, hide behind a screen and do not see or understand the severity of the message you pass out. How do parents with kiddos on the spectrum do this day in day out? Everything that is usually simple becomes a challenge; everything that can usually be accepted and blamed on simple human ignorance now becomes a challenge, a painful angry feeling of being judged or the child being attacked for no reason at all. All the looks of ignorant people not knowing what to make of it, hidden behind quiet whispering exchanges with their friends. I think I would be angry most of the time, because the understanding and knowledgeable folks are few and in between, not really able to erase the bitter flavor society so thoughtlessly sprinkles into everyday life with a child with challenges.
Long story short, we finally found a rental car, and I drove 3 and a half hours to get to our final destination. It allowed the teens to decompress and even to just sleep a bit after almost 20 hours of traveling. It also allowed them to simply listen to sad music and let out the crying they so heroically held back. It was a relief to be in our own little bubble, escaping the crowds, the judgements, the emotions of others.
This made me realize, we, the folks who want to spread Movement Method and Horse Boy Method, have a long way to go to raise awareness and change an incredibly ignorant and non- caring society. I guess it is one step at a time, but we could really use all man on deck spreading this work, because often it is not just the child with the needs who is suffering. There were so many accommodations during our trip for blind folks, or folks in wheelchairs, and even people who had a hearing deficiency- no accommodation and very limited understanding for neuro diverse travelers. Another area of need! I am glad we are a strong and growing team because we have a big job to do.