My daughter loves history.
She constantly asks questions about people and has a fascination for ancestry and our family tree. She subscribes to apps such as Ancestery.com and “Today History”, which lists historical events that occurred on the current day… and she does it just for fun! She loves animals, especially dogs and wolves, and she’s an amazing artist. She can name most of the dog breeds and their origins and memorizes the name of the pet and children of every person she meets. Chanel is very smart and has an exceptional memory.
And Chanel has the diagnosis of autism and a life-threatening seizure disorder.
The most difficult part is this –
Chanel is aware that she is twenty-nine years old and not able to do many of the things a typical young adult can do.
Over the years we have tried to shield her from the social stigma of the autism label. We have explained what autism is and how it doesn’t define her as a person or change her ability to accomplish amazing things.
But despite our best efforts to protect her self-image, Chanel has become more and more aware of the judgment of others.
I have always told Chanel that not everyone is going to like or acknowledge the things we do, including those closest to us. It’s hard not to let other people diminish what’s important to us. We are programmed to let what “they” say and think about us hold us back from becoming who we’re meant to be and doing what we’re meant to do. I know when criticism, disapproval, or discouraging words come from people we love, it really hurts. But I’ve always known that playing it safe to earn other people’s validation will hurt even more. And what’s even more important, I’d be inadvertently teaching my children to conform to the unspoken rules of how to be accepted in the world, which is ultimately the death of believing our dreams really can come true.
As a mother of an adult neurodiverse daughter, I’ve never allowed a coach, a mentor, a teacher, a doctor, or a relative, talk me into believing I can’t accomplish something I feel called to do, and I’ve taught my daughter not to seek validation or permission outside of herself or try and satisfy anyone else’s point of view. Because the truth is, there is nowhere in the world “out there” that will validate our beautiful neurodiverse children.
I couldn’t be prouder of Chanel and the challenges she has overcome in her life.
She works hard, every day, to learn and grow and do the best she can do. She has always been so brave and so determined.
And yet, the older Chanel gets, I find myself having to defend her because the world judges her differences as unsatisfactory and dismisses her as inferior because of her disability label.
Have you ever asked yourself who made the rules or why our value is judged by the labels placed upon us? Who decided what’s right or socially acceptable? Have you ever wondered about the fact that as children we were programmed to judge those who don’t qualify as “normal”? Who decides what “normal” is or is not?
I find it quite ironic how, since the pandemic began in March of 2020, many parents of neurotypical children are feeling the very same fears as all parents of neurodiverse children. These worries and fears have always been a part of life for parents of a special needs child and the pandemic has now brought those fears upon every parent.
It seems that the pandemic has somehow closed the gap between parenting a neurotypical child and parenting a special needs child. Now all parents are feeling, thinking, or fearing things such as…
- Wonder if your child will ever have friends or be able to go to a friend’s house to hang out.
- Wonder if you’ll ever be able to eat out at a restaurant with your child.
- Hope that your child will someday be invited to a birthday party.
- Wonder if your child’s social development, mental health, and well-being will suffer or regress.
- Think about whether your family will ever get to go on a vacation again.
- Worry whether you’ll ever get to gather again for family dinners and holidays.
- Fears about whether your child will be able to go to a graduation with their peers.
- Will it ever be possible again for you to get a break, go to coffee with a friend, get a manicure or your hair done?
- Will you be able to ever have a date night with your partner?
- Fear what will happen if they get sick and become hospitalized or if you get sick and become hospitalized.
- Will we ever stop feeling isolated and alone and have to live without being a part of a community?
When the pandemic ends, hopefully, most of these life events will return to normal but these struggles won’t ever end for us.
Chanel is medically fragile because of her seizure disorder, and I will always worry about sickness and viruses. Even when the pandemic is over, parents of a special needs child will have no choice but to continue to deal with many of these fears every single day of their lives.
Some of us will continue wondering if we’ll ever go to a restaurant to have a meal as a family or attend family gatherings or holiday celebrations, feel accepted in the neighborhood, or be invited to birthday parties. Some of us may always be wishing for a friend for our child or pray they would stop being bullied at school. Some of us may continue to feel isolation in parenthood.
In the meantime, as we continue to feel the effects of school closures and isolation in our homes, don’t worry too much about getting it wrong. Let’s remember there’s not just one right path or one right way of doing something. Or if we do it differently, we’re going to be in trouble or labeled unacceptable.
Don’t worry about how other people are doing it but do what’s right for you and your family.
My prayer for after the pandemic ends would be that humanity will have become more inclusive and less judgmental of one another. That we will have learned that labels don’t define who our children are, nor the value they can and will add to our world. Awareness, understanding, the ability to choose to pursue our dreams and ideals, having our hearts moved by love and compassion – this is what matters for every family.
