As we wrap up April’s Autism Acceptance Month, it’s been so heartening this year to see businesses and our government show solidarity and launch numerous initiatives that support neurodiverse kids.
Movie theaters now have “sensory friendly showings.” The Utah Jazz took efforts to make their arena certified by KultureCity, making the stadium more accommodating for fans with sensory needs. President Biden signed a proclamation calling April 2, 2021 as World Autism Acceptance Day.
These are all worthy efforts and initiatives. But I’m also aware that for many parents, this April could be the first time they are recognizing Autism Acceptance Month, or the first time it’s been on their radar. Maybe they just received a diagnosis and are feeling overwhelmed. As great as these initiatives are, the parents of neurodiverse kids may need something simpler: connection, guidance, and empathy from other parents who know their situation.
Six years ago, my oldest son was diagnosed with autism spectrum disorder (ASD). A few years later, my younger son was diagnosed with ADHD. My husband and I have learned a lot about neurodiversity in a few short years. We’ve grown together and with our two sons. We can honestly say that we wouldn’t change a thing about our family. But that doesn’t mean it’s always easy, either.
That’s why we wanted to celebrate this month by sharing a few things with others in similar circumstances. We wanted to share some guidance we wish we knew when we started our journey as neurodiverse parents.
A learning difference diagnosis is NOT the end of the world.
My husband and I were worried upon learning about our oldest son’s ASD diagnosis. These worries were compounded by the long waitlists for remediation resources. We were both unfamiliar with the diagnosis and were anxious that we were not doing enough. We didn’t know if we were making the right moves. It felt extremely isolating to not know what to do or who to turn to. We did as much research as we could, but we also took tangible action, getting our son into therapy.
As time went on and the therapy started taking effect, we felt better as we started seeing the light at the end of the tunnel. As working parents, we wanted to work toward solutions. We felt better taking action and by having a better understanding of the diagnosis. We also quickly realized that a label was just that–a meaningless label. We have two delightful kids. They happen to have a hard time adjusting to society’s norms. It’s our job to guide them through it.
Be patient with your kids. But also be patient with yourself.
The indigienous Māori people of New Zealand have a word for autism. It is ‘Takiwātanga’, which translates to my/his/her own time and space. Parents are often hard on themselves and blame themselves if things aren’t going “as expected.” It’s important to be patient, be consistent, and live life one day at a time.
Everyone has good days and bad days. I used to think I could do it all, but telling myself that I can do everything only made things worse for me and my family. Thinking I could do everything and bury my emotions almost broke me. I learned to swallow my pride and I asked for help, even if it was “easier to do it myself.” I learned to let other people help me, communicate clear expectations, and not to expect the same results. Don’t hesitate to ask your friends and family for help if you need to: they would likely love to help and would be flattered that you asked.
One mechanism I’ve turned to that helps keep me focused and organized is writing. I write everything down–to-do lists, journaling, things I need to prioritize, etc. This system of writing everything down, prioritizing it, and being realistic about what I can and cannot accomplish has been highly effective for me. I’m not going to complete every item on the list, unfortunately. But I’ve gotten to the point where I am okay with the items I cannot accomplish.
Finally, do not lose your sense of self. It’s imperative to your own hobbies, your own space, and your own life to feel a sense of balance. Do not hesitate to ask a family member, friend, or babysitter for help so you can pursue the things outside of family that are important to you. Often it’s our own guilt that gets in our way and makes us feel selfish. It’s critical to set this thought aside. This will help you bring a fresh energy and perspective to your family life.
Understand your child’s strengths and advocate for them.
It is important as parents to have realistic goals for our children. It’s easier to get school, teacher, and community support when you’re part of the solution. Explain the situation, understand any system’s limitations, and offer solutions that are mutually beneficial. If the system doesn’t work, however, it’s time to find a new one that does.
As you are researching and advocating for your child, most parents feel alone and scour the internet in search of answers. Some of us can get lost and spiral into a web of negative and impertinent information that can make things worse. Instead, use the internet to look for groups of parents, specialists, etc., and find resources that can get you a professional opinion. Every child, neurotypical and neurodiverse, is unique. Just because your child has the same diagnosis as another child doesn’t mean that the same solution works.
As parents, a majority of our conversations are often about what the child can’t do. Take a step back and take the time to understand and nurture their strengths as well. If you can, make the time to enroll your child in activities they enjoy. It’s so important to cultivate their interests and passions, whatever form they take.
At the end, the only thing that matters is that you do what makes you and your family happy. Eliminate all external toxic sources. Do what works for you. If you need to take a day off from your routine or if you need to cut ties with a certain person who drains you, do it. My circle of family and friends is a lot smaller than it used to be. But they are extremely special and supportive–and I know I can turn to them for just about anything.
Lastly, remember to take a breath and enjoy this journey. Remember that as a parent of neurodiverse children, two steps forward and one step back is still one step forward. Take the time to celebrate everything you’ve accomplished as a family, no matter how small. Life is hard and it’s the small moments that are often the most meaningful.
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