Raising a Child with Autism: Interview with a Parent
April is Autism Awareness Month! This initiative is a nationwide effort to promote autism awareness, inclusion and self-determination for all, and assure that each person with ASD is provided the opportunity to achieve the highest possible quality of life. Those of you who have read my previous blogs will remember my younger brother Jason has Autism. To celebrate this special month and promote awareness of these amazing individuals, I interviewed my mom to ask her questions about raising my brother, who is now 24 years old!
1.What were some of the things you noticed in Jason that prompted you to have him screened?
After Jase was six months old, we began to see delays in his meeting developmental milestones. The most prominent was Jason’s limited to non-existent words. We told ourselves that his adorable “Dadadadadadada” was “Daddy” but we kind of knew it was just babble. By the time Jase was 18 months, both his Grandmothers sensed something wasn’t quite right but we were in deep, deep denial! Finally, at his two-year-old check-up our Pediatrician agreed to refer us to a Developmental Pediatrician and our journey officially began!
2. How old was Jason when he was diagnosed? What was your response to his diagnosis?
Jase was two when he was diagnosed and our family joined “The Club”, as we like to say. We had heard the word “Autism” but really had no idea what it was. A part of both of us was relieved: now that we had a label we could figure out what we were dealing with and educate ourselves. Once we knew the “problem”, we dug into making a plan.
3. What were some of the programs and supports that you used to help him grow and develop? How do you handle being his advocate?
We were open to trying anything and everything. At the beginning, I approached autism as the enemy. I was in a battle that I would surely win. Jase became my little science experiment. Anything with anecdotal evidence was good enough for me. The list of therapies, diets, pills, and equipment we tried was long and vast. We had a trusted team of experts that guided us on the mainstream approaches, so we really felt we had all the bases covered.As far as being Jase’s advocate, we took a team approach with me being the lead. We tagged each other a lot, and knew our respective areas of expertise. I had a softer approach but when we had to get squeaky, with the school board for example, Steve was happy to step up. We had clear objectives and lots of support from our extended family. We needed every hand up, hand out and kindness that came our way!
4. What was the biggest obstacle you have overcome in Jason’s life?
I struggled with accepting Jase the way he was, a wonderful child who happens to have autism. I believed I could defeat this beast and have my “normal” child back. Steve was able to accept and love Jase just the way he was way sooner. The problem was me. I had to believe that Jase didn’t need to be fixed because he wasn’t broken.For Steve it was accepting that Jase wasn’t sick or dying, he was just different. There is a wonderful article titled “Welcome to Holland” that hit home for both of us.Nowadays our challenge is accepting that Jase is capable of way more than we expect of him. Our urge to protect him is actually holding him back. We need to get out of his way more often…it is really hard!
5. How did you manage parenting your two other children while still providing additional support for Jason?
This was easy! We made extensive use of the “divide and conquer” approach. We knew we were both competent and played on the same team. We didn’t keep score or micro manage each other. We respected each other’s decisions and didn’t over-rule each other, no learned helplessness!
6. What advice would you offer to parent’s who have recently become a part of the ASD club?
Read “Welcome to Holland”. Clean up your child’s diet, it is relatively easy when your child is young and much harder later on. This way you will have no regrets. Trust your gut, if an approach or therapy doesn’t feel right move on to something else.Ask yourself “What if this is meant to be a good thing?” over and over again. It is a fast way to get you seeing the glass is half full.
7. What is your favourite part about being Jason’s mom?
Jason has made us both better people, no question. We believe Jase chose us to be his parents and that makes us feel very blessed and humbled. He has made us a stronger, more grounded, more accepting and loving family. How great is that?
Christie is the Marketing and Events Manager at Kids & Company’s head office. She is one of three children and was born and raised in Toronto. Christie enjoys spending weekends with her family at their cottage and is looking forward to getting married there in July! Connect with her at firstname.lastname@example.org