Living with Autism in Vienna

My name is Tova Marr and I am a Canadian, full time working mother living in Vienna. My beautiful Raphael is the light of my life. He also happens to be non-verbal autistic. The past five years have been an adventure: filled with struggles and tears but also with pride and accomplishments.

Our autism journey started when Raphael was about two years old when we started getting complaints from the kindergarten he had already been attending for one year that he wasn’t listening, he was having tantrums and he didn’t want to eat much at lunch. I shrugged and said “Typical twos”. One day, as I dropped him off, I was given a letter. Someone had written a report about my son and it ended with “Aspergers.” I was devastated and angry; even more so, when I later found out that the observation had come from a student. Why had one of the more qualified pedagogues not yet reported this? His behavior worsened and in a desperate move, I found another kindergarten willing to give him a try. On our first day, we showed up and we were informed that he would have to voluntarily enter the playroom for us to move ahead with a full integration. Four cold weeks were spent in a freezing coatroom and it became clear that this was not going to work.

Around this time we also started a diagnosis series for Raphael. It involved a neurologist, a speech therapist and a therapist and after many sessions, he was diagnosed with autism. We told the head of our new kindergarten about the diagnosis and she nodded. She then asked how he was birthed. Once finding out that he had been a C-section, she said “I have a solution.” and it was then that she suggested we try “re-birthing”. Re-birthing is when they take a child, restrain him for 45 minutes to an hour, and then release him through some tight fabric and into your arms. In response I said “Well, I need to head to work so let’s take a rain check?” And that was the last time we attended that kindergarten.

 

Disheartened, we headed back to our old kindergarten where shortly thereafter they finally kicked us out, declaring our son the worst behaved child they had ever encountered. Around this time (he was three), he lost all of his vocabulary and it was devastating. This is what is known as regressive autism. We started at an integration kindergarten and it was a wonderful three years. In the interim, we looked for information about autism and we contacted a couple of autism centers. We met with one but received no help and I then figured that the best way to ensure that we could get support would be to bribe the afore-mentioned autism center. I held a fundraiser in May 2015 and was able to raise over 1,500 Euros. I sent the money to the center and I eagerly awaited an email back… I did get an email… all it said was “Thank you.”

 

I decided at that very moment that it was time to start my own thing in order to provide support for the community. In September of 2015 I launched the Facebook page Autism in Vienna: Beacon Beach House. Now we have over 1’200 people on the Facebook page. Last year in November, I went one step further and started a not-for-profit organization and so far we have been able to organize the following:

 

  • Speech by Canadian Member of Parliament the Honorable Mike Lake
  • Hard Rock Café mornings with Santa and the Easter bunny as well as an autism breakfast
  • Therapy networking evenings at the Beaver Brewing Company
  • Sensory friendly movie afternoons at the Film Casino
  • Picnics
  • Parent nights
  • A museum visit at the Wien Museum
  • A couple of seminars covering various therapies for coping with Autism Spectrum Disorder (ASD)

In 2018 we hope to continue to offer events. We plan to host more seminars, sibling support groups, museum visits and in January we will be kicking off monthly visits to The Cake Tree.

My ultimate goal is to finally find a location for Autism in Vienna: Beacon Beach House. There we would have a playroom as well as space for seminars, co-sharing therapy offices and one day, I hope to open a café that would employ people with autism. It will take a while but I am confident this will all happen but in the interim, I will continue to campaign for autism acceptance and of course try to raise money for the center. I don’t want parents to go through what we had to go through. I want Vienna to be a welcome place for autism and I want my son to have a future. I also want a nap. And what about my son Raphael? Well, he just started at a special needs school and I am happy to say it is going well so far. And I could not be prouder of him.

Information:

Autism in Vienna: Beacon Beach House can be found on Facebook: https://www.facebook.com/autisminvienna/ (website coming soon)

My blog, which is about my life in Vienna and raising my son can be found here: https://operationtubetop.blogspot.co.at/

And I also have a podcast that is about my life and I interview amazing people living in Vienna. Here is my channel: http://tmspatz.podbean.com/