Tag Archive | autism acceptance

Where Do I Take My Son To Pee????

It seems that I have caused quite a stir on Facebook with my most recent post getting approximately 1500 comments and over 300 shares in less than 24 hours!  The post was short, so I would like to take the time to clarify exactly what happened that upset me.   Ben was taking swimming lessons at the Aquarena from the Autism Society.  He requires assistance with changing his clothes and with toileting.  While there is a change room for people with special needs, when I asked for directions to the family bathroom, I was told by two staff members that they do not have a family or a  gender neutral bathroom.   So, I had to choose between taking him to the men’s or the women’s and I chose the latter.

This was not something new to me! I am a single parent and Ben loves to be out and about in the community, shopping and going to restaurants.  Many places are not equipped for people who have an attendant of a different gender with them. Up until that point, it did not cause a dilemma for me.  Sure, I got some strange looks taking a boy into the ladies room, but in my eyes, he is my baby and it is no big deal to take your little boy to the bathroom with you.

That was what I thought until two days ago when I walked into the ladies washroom at the Aquarena.  Sharing this small, two stalled space with 12 year old Ben, was a girl about his age.  Needless to say, this adolescent girl felt uncomfortable with this set up, as did I.  It certainly was not great for Ben’s dignity either.   It was then that I realized he is not a little boy anymore.  He is an adolescent boy, who is quite big for his age, taking a size 10 in men’s shoes already.   He is quickly growing into a man.  How will it look when I, a single mom and his primary caregiver, have to take him to the ladies bathroom then?   If he has a respite worker, it will most likely be a female as the majority are.   As far as I am concerned, Ben’s basic human right to be able to access a toilet has been violated.  Many of the people who responded to my post have  been in the same situation, so this is much bigger than me and Ben.  Not just people with autism, but people with physical disabilities or disorders such as Alzheimers may also require assistance with toileting.  It is an issue that needs to be brought to light.  It makes me nervous to think about how I will proceed with this, but something must be done, and it looks like I will be the one to start the ball rolling. I hope my angels got my back on this one!!!  (If you would like to sign my petition, please go to my Facebook page )

In addition to bathroom accessibility for Ben, here are some other things that would make for a more autism friendly world:

Autism Friendly Hotels:  I was once told by hotel management that if we didn’t keep the noise down, we would be asked to leave the hotel.  The noise he was referring to was Ben’s stimming: loud vocalizations and jumping.  These behaviors, although disruptive, are necessary for his sensory integration. The picture below was taken at Canada’s first autism friendly hotel, located in Port Aux Basques, NL.   It provides a space for children on the spectrum to meet their sensory needs.  It also has a specific room for individuals with ASD and their families.  Nothing in the suite is movable or can be thrown should a guest become distressed.  In an autism friendly world, all hotels would have such a room, and would be more tolerant of autistic behaviors such as stimming.

Photo credit: golfnews.ca

Autism Friendly Movie Theatres:  A friend of mine was once asked to leave a movie theatre because her son’s vocal stimming was disturbing to the other movie goers.  Some movie theatres offer mommy and baby matinees where crying is ok.  I would urge all movie theatres to offer this service and to extend the invitation to children with autism and other special needs.  Rather than call it a “mommy and baby matinee,  a more appropriate name might be “An Inclusive Movie Matinee”.

Autism Friendly Airports:  It can be difficult traveling alone when you have a child with autism, as Ben’s dad once learned when he disappeared at Heathrow Airport!   Wouldn’t it be great if airport personnel provided assistance to families who are traveling with a person with ASD, in the same way that they support people with physical disabilities.

Autism Friendly Stores:   When Ben was younger, it was very difficult for him to wait in line, especially at grocery stores while he was anticipating his treat!  When I took my kids to Disney World, we got a special pass which allowed not only Ben, but his whole entourage (mom and siblings) to go to the front of the line for all rides and attractions.  How nice would it be if kids with autism got a special pass to go to the front of the line at shopping centers.  Hey, if Disney can do it, then why not Walmart?

Autism Friendly Restaurants:  Imagine a world in which restaurants designated a table, away from the main traffic area, with a sign that says “Autism Friendly Table.”  Then if the child was having a meltdown because for example, his chicken nuggets were touching his fries, people would know at a glance that the child has autism, and is not just “being a brat” as is too often assumed.

Autism Friendly Hair Salons:  Many children with autism resist getting their hair cut, which can cause quite a scene at hair salons.  Wouldn’t’ it be great if hair salons offered a private room, with dim lights and soft music to help soothe the senses of people with ASD, while preserving their dignity?

Autism Friendly Parades:   I am happy to say, that in my home town of Burin, Newfoundland, last year’s Christmas parade was autism friendly!  There was a stretch of the parade which was quiet, no sirens or loud music, for people on the spectrum who are sensitive to loud noises.  In an autism friendly world, all towns and cities would adopt this practice.

Autism Friendly People:  In an ideal world, not only would businesses be more accommodating to people with autism, but so too would people.   However, that can only happen if we raise understanding and acceptance of the disorder.   The time for awareness has passed.  People are aware that autism exists, yet many still react in a very negative way to autistic behaviors such as stimming and meltdowns.  Tolerance.  Understanding.  Empathy.  That is what an autism friendly world would look like!

As my friend, Kathy Hickman pointed out to me, these services would benefit not only people with autism, but people with other exceptionalities as well.  Like the hotel in Port Aux Basques, whose story went national, it would also be a smart business move.   If there are businesses in the St. John’s area who would like to have their staff trained on autism sensitivity, or would like to consult with me on how to make their business a more inclusive environment, please contact me through my website: www.florencestrang.com.   Not only do I deal with autism on a personal level, I am also an Educational Psychologist, so doing these presentations is part of my work.   I am offering this as a free service.

You can buy  our book “Calm the F. Down! A Day in the Life of an Autism Mom”
HERE

Acceptance

am

  God, grant me the serenity

  To accept the things I cannot change;

Courage to change the things I can;

And wisdom to know the difference.

                                                                                                (Reinhold Neibuhr, 1943)

The inability to accept the things which we cannot change in life can be one of the greatest obstacles to inner peace. When people experience loss in their lives, they typically go through what well known psychologist Elizabeth Kubler-Ross referred to as the stages of grieving: denial, anger, bargaining, depression, and acceptance.

When my youngest son was diagnosed with autism at the age of three, I suffered a loss.  While Ben was still physically with me, the hopes and dreams I had for his future were suddenly taken from me.  Although I did not realize it at the time, in retrospect I can see how I went through a text book case of the stages of grieving.

Denial: At first, I ignored the signs.  Sure, Ben preferred to be on his own, as opposed to the company of other people, but he was half British.  “The Brits are known for their aloofness,” I assured myself.

He was still not talking at the age of three.  “But is not unusual for boys to be late in acquiring language skills,” I told my family.

I noticed that he preferred to line up his toy trucks as opposed to play with them in the conventional way. “But that’s probably just because he doesn’t have play mates his own age,” I reasoned with my friends.

Anger: The first person to suggest that Ben might have autism was his father, a pediatrician.  I was outraged!  “Are you nuts?” I yelled.  “I can’t believe you would think that our beautiful son is autistic.  It is absolutely ridiculous. You obviously know nothing about autism.”  I am not exactly sure if I spoke those words to him directly, but I do know that I would go on wild rants whenever I thought about him making this “outrageous” diagnosis!

Bargaining:  When Ben’s speech-language therapist later suggested that we get him tested for autism, it really scared me.  Was it actually possible that my baby boy could be autistic?  Even the word autism scared me.  I bargained with God.  “Please Dear Lord, don’t let him have autism.  Let him be deaf or have a learning disability; anything but autism! Those kids are so cold and unloving.”

(Then God winked at me and replied, “Florence, do I have a lesson in store for you!”)

Depression: Even though more and more professionals were suggesting that I should have Ben tested for autism, I still clung on to the hope that he was just a late bloomer.  Then one evening, while chatting with a colleague of mine, I casually mentioned that Ben’s therapist had suggested autism.  I waited for his re-assurance that I had nothing to worry about, but instead, he gave a response that literally knocked the wind out of me.  “I can see that,” he said.

I gasped for air.  My voice cracked, “What the hell do you see that I don’t see, because I DON’T SEE IT!”  Then with all of the kindness that he could muster, he went on to point out the red flags that I had been ignoring: Ben’s lack of social interactions; his poor eye contact; not responding when his name was called; his fascination with letters and numbers; and his tip-toe walking.  I had a great deal of respect for my colleague, and when he said it, I knew it had to be true.

I started to cry and didn’t stop for three whole days.  Even months after his official diagnosis, the slightest thing could set me off.  I remember, for example, one evening when my son Donovan, then 11 years old, came home after being out to a movie with his friends.  He was very proud to tell me that he had put his arm around a girl he liked, who sat next to him at the movie.  I burst into tears.  All I could think was that Ben would probably never experience the excitement of having his first girlfriend.  He might never even have a real friend.  Because of this dreaded diagnosis, his whole life would be a series of obstacles, struggles and challenges.  Instead of a normal childhood, full of fun and play, Ben’s pre-school years would consist of work.  He would have to undergo intensive therapy to learn how to talk; therapy to learn how to play; therapy to learn how to recognize emotions; therapy to learn how to dress himself.  All of those things that “normal” children learn by watching and doing, would be hard work for Ben.   As a mother, it broke my heart that he would be robbed of a carefree childhood.

Acceptance: Finally, after months of intense sadness and feelings of loss, came acceptance. It came to me one night as I was praying my nightly prayer for my three children to be safe, healthy, and happy. It suddenly dawned on me that God was still answering my prayers. Ben was safe, he was healthy, and he was happy. Being given the label of autism did not make him cold or unloving.  Ben was still the same sweet, kind, loving, smart, adorable little boy that he was before his diagnosis.  I knew that there would be challenges ahead for both of us, but we would face these challenges together.  I finally accepted his autism and only then was I at peace.

In my work as an educational psychologist, I often see parents of autistic children who get stuck in one of these stages, and don’t come to a peaceful resolution of acceptance.  They frantically search for ways to FIX their child….diet, supplements, new therapies, or even stem cell transplants.  While some of these techniques may provide benefits, there is no cure for autism.  As a society, we need to understand and accept autism for what it is.  Remember, God does not make mistakes!

(This post is a chapter from my new book, “Soul Steps: 52 Ways to Reconnect with Spirit”, co-authored with Veronica Connors and Natalie Finlay.  Due for release in June of this year).