A Mom’s journey along the spectrum
Every year, on World Autism Awareness day, I reflect on how simple it is to mark one day to collectively raise awareness and acceptance for Autism. Yet, I know that for many families and Moms like me, every day is about unconditional love and acceptance and relentless advocacy to support our children on the Autism Spectrum.
My journey as a #MomAlongtheSpectrum started during the pandemic, perhaps a period where the lines between what’s considered typical were blurry to say the least. While nothing could have prepared me for it, I knew something was different. You see, having a child with Autism doesn’t really change who they are- it only changes our expectation of who we thought they should be. I have realized that no matter what the diagnosis – which is often more than one as Autism has a higher rate of co-occuring conditions, the only thing that matters is how you choose to live it and how you advocate for your child. I chose Love, Belief, and Strength.
I continue to learn so much each day from my son. Life’s simple joys- a song’s beat and moving feet, spins to feel the air, the endless beauty of petals, the magic of a rainbow, the sweetness of a perfect marshmallow, and the warmth of tight hugs and snuggles- I could go on forever. I also know that not everyone sees the magic and it can be exhausting and at time alienating to find our place in a neurotypical world. But if I have one mantra, it’s never to give up. There will be ups and downs along the way, mountains that need to be moved, and perceptions that need to be educated. It all begins with how we decide to show up and embrace differences. Dr. Seus said it best- “Today, you are you. That is truer than true. There is no one alive who is youer than You.” And with this, each day I celebrate my son for who he is and love him with all my heart.
Even though my journey is far from over, I’m sharing some of what has helped me as a Mom, in hopes of helping others. As a coach & Mom raising a child on the spectrum, I am committed to helping others navigate this journey, so feel free to reach out to me anytime.
Trust your instinct. You know your child the best. As a Mom, it was hard for me to raise the flag, especially as we had a regression that was hard to explain. Factors including culture, family perceptions, ‘passing phase’, and just plain old denial stared me right in the face. But as a Mom, I knew that I had to get help now- and that was the best decision I could have made for my son. In New York, Early intervention and supportive programs and services make it possible to get help early and support your child in their most formative years through intensive therapy. It starts with trusting your Mom instinct and knowing that awareness and action go hand in hand.
Focus on today, plan for tomorrow. It would not be true if I told you that I don’t worry about the future. But what keeps me going is knowing that I have a solid plan for his needs today. Getting your child the support they need now is imperative- as their needs will evolve with time. For the longer term, lean in on resources available to secure what you can for the future, including 529 and Able plans. But being present in the moment and meeting them where they are today is the best gift you can give your child.
Put on your mask first. I’m guilty that it took me a while to practice this. The thought of am I doing enough, the need to spend every minute trying to engage, the feeling of neglecting my older son- all weighed on me. But with each passing day, I realized that I can only be the Mom I need to be for him, if I can be the woman I need to be for myself. You can’t pour from an empty and broken cup. There is power when you allow yourself space and fill it with whatever sparks joy for you. For me, it was stillness within my mind- and movement on the outside. I started running, not just for myself- but for the journey I’m on with my son to be stronger together. I hope you can find what sparks that connection and fills your cup.
The journey to advocate for and support your child is a long one. I know there will be settings where my son is not understood, where I will get the occasional stares, the judgements, the birthdays he won’t be invited to, the classrooms he won’t be accepted in- but it is ok to move past it. Because he is exactly who he needs to be and because of that, I have the incredible privilege of being his Mother. I never cease to admire his hard work, dedication and commitment to learning essential skills that many of us take for granted.
There is a lot that needs to be done for true autism awareness and acceptance. If each of us can do our part by practicing kindness, seeking knowledge, and offering support where we can, we’ll create a better world, where there is kindness, acceptance and zero judgement.
Until then, as Dr. Seuss said, Why fit in when you were born to stand out?
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