The Year was 2001. D-Day. Â
That was the year of what we call in the AUTISM world D-Day.
Diagnosis day. The day that life as you dreamed it would be coming to a screeching halt. The story you had in your mind about what being a mom would be is taking a hard left turn and the road ahead will be really bumpy at times.
One that you’re not prepared for.
AUTISMÂ
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When you’re way behind joining your friends in the mom club because you had your first child when you were 28. Meanwhile, they were well on their way in the mom role and yet still…
AUTISM wasn’t even on the radar. Anywhere.
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No one in your circle of family and friends at the time had a child with autism. You had never heard of autism and had no one to turn to. You were scared. So much uncertainty.
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What did it all mean. What would he be able to do or not do? Would he ever be able to communicate.
Would he ever sleep. Afterall, he hadn’t slept in 5 years. You’re questioning if you can even do it?
Pondering if you will ever hear him say the words “I love you mom”.
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Feeling your heart shatter one thought at a time. And they keep coming one right after another.
You’re worried what it means for your family.
What about his beautiful little sister. Was she going to follow suit? Would she be diagnosed autistic one day too?
You wonder what his future will look like. What your future will look like.
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You worry what people will say. Will they blame you or secretly think you did something wrong?
So many questions without any answers.
Embarking on this road untraveled with no map.
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The day that the little boy you just knew would for sure play short-stop one day for the New York Yankees gets an AUTISM diagnosis.
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The trajectory of our lives changed forever that day. We became a family living alongside autism.
Searching for answers and guidance, understanding and acceptance.
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Your story is likely similar, yet different.
Every parent goes through this life-changing event of an autism diagnosis in their own individual way.
Some grieve the child they dreamed of having.
Some question their faith.
Some dive deep into finding out why & how.
Some suppress their emotions & push forward.
Some withdraw their family from the world.
Some find themselves consumed with envy.
Some pray every day for it to be different.
Some dream of the day it will be different.
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None of these emotions are wrong and you should never feel ashamed of how you feel.
No one can tell you how you feel. Only you know.
But what I can tell you is that processing those emotions is so very important for you along this parenting journey to move toward acceptance. It’s not a sprint, it’s a marathon. Day in and day out.
Over and over and over again.
Pace yourself.
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Be patient with yourself and above all have compassion and give yourself grace. You will make mistakes, we all do and you will learn from them. You will be better because of them
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Learn to slow down. Running full speed ahead in your role as a mom isn’t sustainable when you belong to a person with autism.
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Be in your reality instead of that place you desperately want to be. Don’t compare yourself or your child to others. Everyone in the world has something. Our something is ours.
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Let your child be who they are instead of allowing yourself to continuously have unmet expectations leading to disappointment and sadness. Meet them where they are and celebrate their milestones.
They are on their own timeline.
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Don’t believe the story that you have made up in your brain about their future. You don’t know.
If you let them, they might just surprise you.Â
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Always remember that YOU matter. You have to take care of yourself because if you don’t, you can’t be what they need. Remind yourself of that often.
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This was written by Shannon Urquiola at Not Your Average Autism Mom.
Thank you for being part of our journey.
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Shannon shares her lived experiences in hopes of creating a more inclusive world for our children and adults on the spectrum.Â
Our mission is to equip families with resources, training, coaching, and community support. We believe if you are willing to expose yourself, your child, and your family to the world with kindness and honesty that compassion and understanding will follow.
She presents to organizations and businesses in person and virtually.
