A few weeks ago, I had a photo shoot with Marlene and her family. Marlene was initially apprehensive since her daughter, Greta, is autistic and therefore could be a challenge. I reassured her I wasn’t going to make it overly formal and that she could do whatever was needed to make Greta feel comfortable and relaxed.
The shoot went really well and after editing the pictures I was loving how they turned out. I wanted to post them but not just on their own, I wanted to include Marlene and Greta’s story. I asked Marlene if she would be willing to write up something for me to post and she was immediately on board. My goal was to help Marlene and her family create some awareness on Autism, and through her shoot, show that Greta is your average kid who loves bubbles and hates photo shoots!
This is Marlene’s (and Greta’s) story….in her words…..
Autism. It wasn’t anything I knew about. I had noticed Greta was getting moodier, not sleeping well and didn’t seem to care if we came or went. This was a slow regression from our completely normal and fully engaged child. Greta had about 10 words but not the number she should have for 18 months so I referred her to Speech Services Niagara. While we waited for assessment, she lost all her words completely and the sleep issues, moodiness and lack of awareness of people around her increased as did her gastrointestinal issues. My mom called me one day in the spring of 2009 and said “Don’t get mad but I just saw something on the Today show and I think it applies to Greta”. I went online immediately and it was at that moment that I realized Greta was autistic.
I had an appointment with my family doctor the next day coincidentally and mentioned it to her. She called me that night at home and told me we would get to the bottom of it. Together, we navigated the system on what to do next. Greta was fortunate to get diagnosed late in August 2009 after her first visit with the developmental pediatrician at the Niagara Children’s Centre, this is generally not the case. I was a squeaky wheel and we managed to get a cancellation appointment. My outlook from the start was a call to action. What do we do?
I read and researched and we waited on long lists for help, therapy and answers. When we discovered the wait list for the Intense Behaviour Intervention therapy (only funded therapy by health care) could be over 2 years, we hired someone privately to start to work with Greta. What a godsend that was. Ange continues to work with Greta and she has helped us with so many critical steps, wearing boots and toilet training to name a few.
Greta waited three years from her diagnosis for her therapy and after two years, she was discharged as the rate of her increase in learning was not fast enough. She was still making gains, just not fast enough and that is the criteria to be discharged from this $4000.00 per month therapy. At this point Greta’s future therapy is a burden placed back on families and there are no sources for funding if your combined family income is above the poverty line.
We continue to deal with issues around behaviour and outings in the community require much planning and preparation. Greta continues to have many issues with food and gastrointestinal problems but we have tried nearly all therapies available. Greta has been on many supplements, special diets, works with a specialized speech team to use an ipad to communicate and has attended a private specialized school for alternative learners, Brockview Academy for two years. The most amazing addition is her dog guide “GUY” provided to our family completely free of charge by the Lions Foundation.
We have dealt with so many amazing people along our path through Autism. A family photo shoot was something I never thought would be possible, but Sarah was so laid back and just let us be us and captured some beautiful moments without ever seeming like it was out of the ordinary.
We have left many a place in a hurry, shopping carts left abandoned, many stares from people who don’t understand that it isn’t bad parenting or a spoiled child, but we forge onward and enjoy the beautiful smiles, hugs and giggles that Greta gives on days where she is able to give them. On days she cannot, our job is to keep her safe and love her unconditionally, same as any parent.
I’ve learned not to sweat the small stuff and pick my battles. I’ve learned to celebrate the smallest of things. I learned the power of my support system and that it really does take a village to raise a special needs child.
I would take autism away from Greta in a heartbeat don’t get me wrong, but I am thankful for her and the compassion, faith and understanding she has brought to my life.