5 Life Lessons I’ve Learned from Raising an Autistic Child — Learn Patient Advocacy
Being the sister of an autistic man, I thought I knew a lot about autism. After all, I had grown up watching my brother struggle through the education system in the 1980s and was familiar with his stimming as well as challenges with changes to routine. But this ‘lived experience’ still didn’t prepare me for raising a child diagnosed with autism spectrum disorder.
In honour of World Autism Awareness Day (April 2), I’m sharing some life lessons I’ve learned from raising an autistic child. This journey has not only made me a better mom, but a better person. It has helped me have more patience and compassion with others.
#1 It’s not about me
Many parents know a key part of parenting is putting your child’s needs first. When you have an autistic child (or any child with special needs), you need to shift not only how you parent, but your own perceptions. Over the years, I’ve attending a lot of workshops, webinars and watched oh so many YouTube videos trying understand how to best support my child.
You see, I quickly realized I needed to have a better idea of how my child experiences the world. Being neurotypical, I had no idea how noises, smells, visuals and other inputs bombard his senses throughout the day (sensory processing). I also had to learn that his meltdowns weren’t bad behaviour or something I could fix. Only by learning more about how autism impacts his daily life, could I be the parent he needs. Not the parent I had always envisioned.
#2 Personalize the diagnosis
It’s funny how quick we are to apply assumptions to labels or diagnoses without first trying to get to know the person. Many of you are likely familiar with the saying — if you’ve met one person with autism, you’ve met one person with autism.
This was a big lesson for me to learn. My experience with my brother is completely different than with my child — because they are unique individuals. It may seem obvious, but is a lesson many people struggle with — particularly in schools.
I often hear — it’s okay, I’ve taught a child with autism before. Great, you’ve also taught kids who wear glasses, have brown hair or like to hum. After taking a deep breath, I begin the conversation about the person, all the strengths they bring as well as challenges, instead of letting the diagnosis define them.
#3 Advocacy, advocacy, advocacy
I was never much of an advocate until I had children. It didn’t take long to realize that unless I advocated for their needs, they would be lost in the system.
As I refined my advocacy skills, I also discovered that advocacy doesn’t always equal the squeaky wheel. It means speaking your truth and holding you space.
By holding my space, I’m not looking to push others, nor will I allow myself to be pushed off course. Rather, I stand true to what I believe and continue to advocate for what I know is right — not only for my child, but other children.
The lesson of speaking my truth and holding my space has served me well in my professional and personal life. I now lean into the tough conversations, knowing there are times when they are necessary for change to happen.
#4 Going slow speeds things up
As a reformed type A personality, I spent most of my life charging ahead. I thought the only way to grow as a person or professional was to run at full speed.
Boy, was a wrong. As developmental milestones came and went, and obstacles arose in our path, I learned the importance of going slow.
My child has their own timeline that is outside of my control.
Sure, it may take longer for him to read, but when he read a sign while we were in the checkout line, I burst out crying. And when he started speaking in complete sentences in kindergarten, I was so proud.
I now appreciate that we all have our own pace, and that going slow is sometimes needed to speed up the learnings.
#5 The power of community
This last lesson has been the most transformational in my life — embracing the power of community.
Every struggle we’ve navigated or success we’ve celebrated has been the result of community. I’m fortunate that as a speaker and advocate, I’ve been able to meet so many amazing people (some via social media and others in person).
They have taught me that the key to navigating this journey, is to tap into the wisdom and experience of others. We truly are stronger together.
As we mark World Autism Awareness Day, I encourage you to think about the lessons you have learned through your involvement in the autistic community. How have you changed as a parent, professional or family member? And finally, how can you share these gifts with others?
For me, I will keep on advocating for these amazing individuals while still taking the time to play Minecraft and talk about wither storms with my child. Oh, so many, many times. And I will cherish these conversations and the ongoing lessons he is teaching me.
Originally published at https://learnpatientadvocacy.com on March 25, 2021.