Meet Kane from NWT
Any parent would say they want the best for their children and would want them to have if not equal but fair access to programming and activities.
Kane is a happy young man who was diagnosed with autism when he was 2 and half years old. He is funny, cuddly, smart, and sensitive. He loves animals and has a unique ability to mimic their sounds.
Kane is very intelligent, and he has a great memory. He excels in school and in learning new skills. He loves all things Disney and can recite various quotes from Disney characters on demand. His mom describes him as an outdoor enthusiast, and he enjoys swimming and gymnastics.
Living in the North, Kane has faced challenges surrounding his diagnosis and availability of supports and services. Just to receive his diagnosis, Kane and his family had to take a two-day drive down to Edmonton, Alberta for an appointment. Where he lives, there are no specialized programs or private services to enable access to the recommended amount of therapy needed to excel.
Learn more about Kane’s autism journey in this Q&A with his Mom, Renee.
What age was Kane diagnosed with autism?
My son Kane was 18 months old when we started noticing signs of autism. We got referred to Glenrose in Edmonton, Alberta, and had a year wait for the appointment. At age 2 and a half years old we made the two-day drive down to Edmonton for the appointment where he was officially diagnosed with autism.
How has autism affected your life?
Early on in my son’s life I thought I would have to accept the fact that he may never speak. It was not until he was close to 4 years old when he started making sounds. He started with making animal sounds, then saying the first half of the word and then saying two words together to finally be able to have a short conversation with someone. I have watched my son go from loving the outdoors, being a risk taker, to not wanting to leave the house because the anxiety was too much. Emotions can affect him, he feels a lot, especially if someone around him were to get hurt, he would become overwhelmed with sadness and this would cause a meltdown. Any excitement or surprises would also be too much for him. Kane struggles with sensory issues like food textures, types of clothing and loud noises.
How does it make him unique, and help him excel?
Kane is so good at making all types of animal sounds and gets complimented on it. He also has a great memory and can recite many Disney movies off hand. One of our favorite games to play is asking him to recite the different quotes various Disney characters would say. When it comes to academics or learning a new skill, Kane picks it up very quickly and gets easily bored once he has mastered the skill.
What struggles have you faced because of autism?
Because we live in the North, there are limited services we can access here. In the beginning Kane had one hour of speech and OT once a week. A far cry from the intervention his doctor from Glenrose had recommended. There are also no private services available to access the amount of suggested therapy needed to excel. We have no special programs like ABA, or behavioral and communication methods. As a parent I had to do a lot of advocating and took many courses and workshops to educate myself to be a better parent and teacher for my son. We also face limited childcare and afterschool care. I had to quit my job of 10 years to care for my child due to lack of adequate daycares.
How has your family supported you through your autism journey?
Any parent would say they want the best for their children and would want them to have if not equal but fair access to programming and activities. As a parent, I am constantly advocating for my son and providing space for him to be able to enjoy certain leisure activities. We do lots of group rentals to facilities such as the swimming pool and gyms where he is surrounded by those who know him and can provide support. My in-laws also help a lot by caring for him when he is out of school and/or when we could not find childcare for him. We are thankful that we have a close-knit group of people who know Kane and offer support from time to time.
Has your life been impacted by Coronavirus? What are your some of your goals and hope for the future?
Last year when the coronavirus hit, we lost Kane’s support team. His routine was interrupted, and it took some time to adjust to the new normal. Activities Kane enjoyed were also no longer available, like swimming or going to the gymnastics club. Eventually we were able to access OT via zoom and had weekly zoom meetings with his support workers. This went over well and brought back some normalcy. We were also able to access funding from Jordan’s Principle and purchase sensory items he could use at home, like a weighted blanket, a swing, and a bubble light. We have not been able to visit family like his grandma and grandpa because they live in a different province and we would have to self-isolate for two weeks.
What advice would you give to a young person, recently diagnosed with autism, wondering what the future holds for them?
Do not limit yourself, all things are possible. It may not be done in the most conventional way, but with proper supports and creativity anything is possible.
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Disclaimer: These are subjective opinions and real experiences of autistic people across Canada. Autism Speaks Canada does not provide medical or legal advice or services. Rather, Autism Speaks Canada provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks Canada has not validated and is not responsible for any information, events, or services provided by third parties.