To raise money and awareness for the challenges faced by those affected by Autism Spectrum Disorder a App and challenge was devised for facebook and Twitter uses to shut down their accounts for 24 hours. The app included a symbol of a red speaking bubble with a line through it placed over your avitar picture, and automatic status updates announcing your absence from Facebbok/twitter for the day.
To get the app or CHAPP as they called it you had to first make a donation, money from these donations will be given to registered ASD organisations in your country.
Being that my son has a syndrome with ASD like characteristics, and I now have many friends who's children have degrees of ASD I was definitely enthusiastic to participate.
The night before however I was thinking, this just isnt enough. Whilst I do agree its a great idea, I dont believe that shutting down only facebook and twitter gives anyone much of an idea of what its like to have ASD.
So, I made a pledge to close down ALL my usual methods of communication for the 24 hours. This included facebook, email, blogger, texting and making phone calls, and SPEAKING.
I made a Badge to wear that clearly advertised the cause and what I was doing.
Then from 9:00pm the evening before I began my challenge.
I showed my husband my Badge, he teased me, joking that I would never get through a day without talking! I gave him my first attempt at non-verbal communication, a dreadful mime of "Happy Birthday, I love you!". We hugged and he shook his head in disbelief then wished me luck.
I went to bed, and thats when it hit me. The anxiety. Wondering about how it would go the next day. How would I be able to get my message across. Would people understand me? Would people think I was weired and strange? Would people laugh at me, or would they accept what what i was doing?
What sort of frustrations am I going to face? Trying to plan out in my head how to get around all our usual situations on a Monday; My eldest being dropped ff at his special needs kindy, taking my youngest to swimming class, picking up my eldest, visiting my family, and shopping. Worrying about what might happen that i am not prepared for. Tossing and turning thinking about the complications of the next day.
Then I realised, WOW, thats what its like.
This experience is not just about not being able to communicate, its about the fears and apprehensions that come with that.
Imagine everyday facing the fact that people will likely not understand you, will not know what you want, will stare at you and glare at you. Knowing people will have expectations of you that you know you cant live up to, no matter how hard you try.
Imagine all this, planning and preparing for the day to come, having your systems and routines planned and ready, then having things changed on you, having to face challenges you were not ready for.
On the day; I donned my badge, took a deep breath and set about my day.
My boys; I had to make the exception of speaking to my son's and incase of emergencies, however I tried to communicate with my boys with as little speaking as possible. My eldest of course who lives this life, was to my knowledge not concerned, in all probability he was probably glad to have me so silent! Hee hee!
My youngest was definitely aware something was going on, he kept giving me extra hugs, and joined in with some of my signing(I have been teaching him Makaton; key word signing, since he was born, so he knows a few).
I sent my husband off to work with a few hand gestures and a big hug!
ECDP(My son's Special Needs Kindy): I had some nerves as I approached the building, however I was confident they would accept what I was doing and that communication would not be a huge difficulty as they also know Makaton. I was right, they praised me for my efforts, and I dropped and also collected my son with ease. Even being able to communicate that he would be away the following day, that I would like him to wear his AFO's for 20 minutes, and some communication with other parents, who were all very accepting and happy about what I was doing, and who also made donations towards the cause.
Swimming lessons; As we approached Aquatic Achievers swimming class my nerves and anxiety increased dramatically, the first thing I noticed that I did straight away was to think about peak times at the front desk, and then I proceeded to wait in the car until it was a time I knew that the desk would be clear and I would not have to face too many people.
Things went smoother than I had imagined, staff read my badge and smiled and praised me for my efforts and made contributing donations to the cause. I was able to sign-in my son in for his lesson, pay the due fee's and notify the coach with ease. The class itself was not a complication at all, its very routine, myself and my son had no trouble completing the class with very little communication, except for the "name, ready, go" command which I did use for safety purposes.
The hardest parts were the coach explaining to the rest of the group what I was doing, at that point my anxiety rose again as I braced for the facial reactions of the group. But I was proud and excited to see smiles of acceptance on their faces.
Another parent kindly helped out in giving the coach my name for the introductory song.
Shopping; Again my anxiety levels rose as I contemplated the challenges I was about to face. The first thing I noticed was the uncomfortable feeling of thinking that everyone was looking at me, with my big badge hanging off my shirt. Regardless of whether they were looking or not I found myself dropping my eyes, and avoiding eye contact.
The Bakery; The assistant read my badge immediately, she smiled and I pointed to the item I was after. I paid in cash and found the transaction quite quick and easy.
The Health-food shop; This was a little harder, I am a regular in the shop and was greeted immediately, the problem though became that the item I needed was not on the shelf, I panicked as I struggled to think if a way to communicate to the assistant what I was after. I started by pointing to the empty section on the shelf, however the shop has no labels and things are moved around at times, so the assistant had no idea what product was missing from that area. She started to list off some items that area usually found in that area. It was quiet frustrating at this point to know it could be a long time before she would think of "Pear juice concentrate"! I kind of wish this situation had of become more complicated, but as she listed I continued to search the shelf area, and then found what I was looking for, just in a different brand, I decided to just take that brand. The check-out counter was easy, and also somewhat exciting as the assistant then signed "thank-you" to me. It brought my confidence up to have someone join into my world and use my form of communication.
Fresh Sensations; Fruit, veg and deli; With my confidence up a bit, and also knowing I was entering a store where all the staff knew me quite well I walked in with my head held high. Ordering my regular over the counter meat was a brease combining pointing and hand gestures. Paying at the check-out was also easy as the staff knew how I would be paying. This shop trip for me is pretty much routine, so I felt comfortable and confident, however i did feel a little uneasy at the check-out when I all i could do was stand there and not make my usual conversation, again i found myself dropping eye contact.
The chemist; I knew that this transaction would not be so easy. I had to request a cream for my son. As I approached the counter my new found confidence dropped, and nerves again set in. I showed the assistant my badge, she read it and smiled and I mimed writing on paper. She found some paper, and I wrote down my request. To my surprise, rather than voice her questions about my request she too wrote on the paper to continue our communication. This was surprisingly nice, again I appreciated that someone was joining me in my method of communication. I also liked the feeling that likely she was having a taste of my world(albeit my world for only one day) and experiencing what it is like to have to communicate to someone non-verbally. A chemist also became involved in confirming I was purchasing the right product. Throughout this a mother I know through the special Kindy approached the desk, she quickly identified what I was doing, and praised me for my efforts. It was nice and again confidence building and exciting to see someone I knew. Someone I knew who understood me.
A visit to my family; this was the place I felt most relaxed. With my mother and my sisters. The interaction with my family was fairly easy. They too know Makaton signs, and also they KNOW ME. Although at points I did become frustrated not being able to get my point or message across, it was comforting that my family gave me time to communicate properly with them, and helped me convay my message.
The rest of the day was spent at home, doing routine things, so i felt comfortable and confident. I did at points have stress increases when my dogs barked and I worried that someone was coming to the gate however I did not have to face such a challenge.
It was a challenging day, I really appreciated the support I received throughout the day. I know however this is only a small snippet of what it is like for someone with ASD to not be able to communicate in the way the majority does. And not just those with ASD, there are many others in our community who face these challenges all their life.
I hope that in my efforts I also opened the minds of those around me, at the shops etc to think about the complications others face in their lives. Things that in general we all take for granted.
I would like to give a huge thank-you to those who made donations to my cause either directly to Communicationshutdown.org or to myself(who will direct the money to the organisation).
I would also like to thank all of those who turned their Facebook and twitter off for the day. And those who supported me throughout the day.
It was certainly an eye opening experience, even as a mother of a child with ASD like symptoms, I cannot understand completely what it is like, however this day gave me a greater understanding of the anxieties that my son and others face daily.
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