Continually learning as a caregiver – Anna
In honor of International Day of Persons with Disabilities (12/2), throughout the month of December we will be sharing stories from some of our Q&Able members. Q&Able is a community of problem solvers who work together to enable everyone — regardless of ability — to do more. We support and advocate for employees with disabilities and raise awareness amongst others. Q&Able makes it a priority to commemorate and celebrate International Day of Persons with Disabilities each year in order to spread awareness and empathy for this community, both within Qualtrics, and across the globe. Today we are sharing Anna’s story of being a caregiver to a child with a disability.
Can you talk about your experience as a caregiver for a person with a disability?
My name is Anna and I am mum to two beautiful kids with my third on the way! My eldest son, Jamie, is six years old and was diagnosed with autism when he was four.
I have learnt so much over the last few years about autism and continue to learn more everyday. As I journey through all of this, one of the biggest learning curves has been unlearning what I “thought” autism was and honestly overcoming my ignorance. Still to this day when I see videos of “signs of autism" rarely any relate to Jamie. Jamie will make eye contact, Jamie is a very social person and will respond to his name etc. Again I can only talk about my experience but this is where we have had many difficulties, people often assume Jamie is not autistic and simply a bold child.
I love the way Jamie's brain works. He is really sociable and will quickly bring lots of people together by the energy he brings. He has the biggest heart and is very caring. He has an amazing memory and if something sparks his interest be prepared for him to know more about it then anyone else in the room...Minecraft and Star Wars are among his obsessions, and he can recite whole scenes from the movies shot-by-shot. He is incredibly curious and he consistently looks to challenge himself. He has been a pro at building Lego since a very young age.
However, although I wouldn't change him for the world, it definitely is not easy to have a child with autism. Jamie has been asked to leave daycares, leave extra curricular activities, and is unable to join his peers in yard time. We get numerous calls or comments on his behavior. Even as I write that line, which is my reality everyday, it makes me want to cry.
Jamie is prone to violent outbursts and they mostly come with little or no warning. We have struggled for years to understand what triggers him and it makes me feel so sad to say we still haven't got there. I know one of the hardest things for him is being neurodiverse, being forced to fit in with a neurotypical world. On the outside it will very much look like if he simply doesn’t get his way he will lash out. Understanding that with autism there's a lot going on that may not be obvious to a casual observer is one of the most important lessons I have learned.
How has your experience been in the workplace, in general as well as at Qualtrics?
I have loved being able to work with Q&Able, learn more about other disabilities, and organise events.
What would you like people to know or understand better when it comes to people who have disabilities? Is there anything they can do to better support people around them who have disabilities?
Stay curious, educate yourself, and keep an open mind!
Understand that there are many things most people do not know about autism. I will openly admit that before Jamie I did not realise the impact of comments such as:
“You don’t seem autistic”
“Everyone is on the spectrum”
“Everyone is getting ‘diagnosed’ with something these days”
Why are these comments so dangerous? Firstly, you have to ask yourself what do you think autism should look like? Autism is not always something that one can notice immediately, despite what some people think. Additionally, a major problem for many autistic people is masking their autism — trying to appear "normal", which ultimately can lead to burnout, anxiety, and depression. So what people think of as a harmless or positive comment is actually something that perpetuates harmful and incorrect views about autism.
If you are looking for suggestions on what is better to say I would recommend: “I have no idea what that must be like. Could you tell me more?”
I could talk about this for hours but I also know that I am still learning so I felt the below link sums up a lot of what I think:
Navigating your autism journey: embracing your authentic self | Sharon McCarthy | TEDxTralee
September 21, 2022