How I used my PR Skills to Navigate an ASD Diagnosis
When my sweet Christos Arthur was diagnosed with autism, I went kind of numb. Even though the doctors had told us they were testing him, I didn’t really do much research. I wanted to be sure before I dipped my toe in that water.
Fast forward to the day we got the results, Jim and I came home and sat in silence in the living room trying to figure out what that meant for Christos and for our family. I had never thought of my son having a disability, but is that really what this diagnosis meant?
Jim started reading books, but I just couldn’t consume them like he could. I wanted to talk to real live people with experience who could give me answers and recommendations. I was out of my element. I had never experienced a health challenge like this, but my Type A, PR brain was beginning to kick in.
PR Strategy #1: MAKING A PLAN
I’m the kind of person who makes a packing list before a trip. I write down “underwear”, “socks”, “jeans” and the numbers of each I need to take. I thrive on sitting down every two weeks and making a schedule for pick up and drop offs. I can probably tell you what I’m doing next Wednesday night without looking at my calendar. These sorts of details have a way of sticking in my brain. Schedules and plans help me feel calm and prepared. With the news about Christos, it was clear we had to figure out a plan to help him, and us, succeed.
Navigating the ‘autism system’, like funding options and the government services, is a task in and of itself, but we took on each one by one. We searched for people who could help us, and we went through a lot of friends who knew people in the field. We learned a lot from them. For me, it was a better strategy to talk to friends of friends than wait for appointments and go through copious amounts of scary information online. Jim and I found sessions with people who could help us with applications, we took a night course to help Christos develop more language skills at home and our doctor’s office had an administrator who assisted us with the funding details.
However, the big piece was therapy. There are so many options and the cost is not for the faint of heart. At the suggestion of a friend, we checked out several places pretty thoroughly. We really liked one in particular, Geneva Centre, but I felt like we still needed more information to make an informed decision.
At one point, when we were still trying to decide on therapy options, I signed up for an informational session at a Kids Hospital that had some special programs. A friend’s son had gone there and they absolutely loved the staff and the programming. However, it was a busy time for my business and that specific day I had a media junket in the morning and another in the afternoon. After finishing the day, I dragged myself to this information session. I remember so vividly sitting down and having a hard time keeping my eyes open. I was burning out, but I figured it was worth pushing myself if it meant getting more information.
But during the session, I didn’t learn one new thing. It was all theory and research. If I hadn’t been so tired, it may have been interesting, but I was there to find a place to help my little boy. They barely spoke of the services they offered and what they did talk about wasn’t what we needed. Right then and there, I evoked my second PR strategy.
PR Strategy #2: MAKING EXECUTIVE DECISIONS
In that moment I made the executive decision to stop researching and go with my gut. As a parent, you never really know what is right, but at some point, you have to try something. I went home and told Jim, I’m done asking around, let’s go with Geneva Centre. After all, they came highly recommended, we had a great consultation and the staff seemed knowledgeable. We signed him up the next day.
A month later COVID hit and shut everything down in March 2020.
Personally, I was devastated. I understood why they had to shut down, but we had done so much work to receive an early diagnosis and we wanted early intervention, which is key to development.
Christos went to Geneva off and on throughout the pandemic, but it wasn’t until June 2021 that they fully opened. We took advantage and put him in full-time. He made amazing strides from that point on.
I still wonder if he had been in a program for those 15 months if things would be different now? It upsets me thinking of all the time we lost. But at the end of the day, what is worrying about that going to do for me or for him? He is thriving now with his new schedule, spitting his week between kindergarten and Geneva Centre; the combo of the two is what he needs. After those 15 months with only his dad and I, we want him socializing with his peers. He has wonderful teachers, and we couldn’t be more grateful for the attention and sense of inclusion they foster in the classroom.
PR Strategy #3: MOTIVATE YOUR TARGET AUDIENCE
Since the new year when we changed Christos’ schedule, the progress we’re witnessing is incredible. He’s now naming animals from pictures and he knows the entire alphabet. We’re fostering his love of letters and praising him when he tries or gets the answer correct. We constantly sing songs and use flashcards to entice and motivate him. And how wonderful that his favourite games are educational tools!
Seeing him so happy and developing, constantly reminds me every day to not underestimate him. He understands everything we say, and he communicates with his gestures, words, facial expressions and emotions. Jim wrote a beautiful post that sums up our boy for his birthday last month. You can read it here.
PR Strategy #4: THE ULTIMATE PR PAYOFF - SEEING RESULTS
His hard work is paying off; learning how to manage real life situations and life skills is something we’re constantly working on, but when he put on his pants and shirt the other day – ALL BY HIMSELF - it’s the perfect reminder of how far he’s come in less than a year. In addition to his love for the alphabet, he’s also learned how to swim, loves jumping on the trampoline and moving the couch cushions so he can sit on the springs (which drives me crazy). “Wheels on the Bus” and this song by Usher and Sesame Street are pretty popular and “If You’re Happy and You Know It” has hit the top of the charts in our house.
I’ve also found that setting up the expectations before a task is really helpful for him. Christos used to cry and cry when Jim left the house. It got so bad that Jim had started to sneak out. However, in the past year Jim looks him right in the eyes and tells him he will be back, he says goodbye and gives him a hug before he leaves. At first, he still didn’t like it, but he’s become more comfortable with that and now he just sticks by my side to make sure I’m not going anywhere. That’s big progress for all three of us.
PR Strategy #5: The Post Mortem
Everyone on the spectrum is different; there’s no one size fits all. But if you’re looking for some key takeaways from my experience, I’ll give you my Top Five here:
1. Don’t discount small steps because they really are building blocks that help you reach the next level.
2. Your words and your disposition matter. Kids feel the energy around them. One day I found Christos on the toilet looking down telling himself “you can do it” because Jim would tell him that when we were toilet training. They REMEMBER.
3. There are still times when it’s appropriate to discipline certain behaviours, but more often patience is the better choice. It’s not the easier choice but, in my opinion, the more effective one.
4. Figure out how to get time for yourself. You’re always better when you’re a whole person for your child.
5. When I feel lost as a parent, I always remember what my mother told me: All children want is Attention and Affection. If you keep that at the core, everyone will be ok.
