Beyond Measure
Like so many special needs parents, I’ve spent countless hours filling out paperwork and rating scales about my child.
I know all too well what it feels like to anxiously wait in doctor offices, therapy lobbies, and conference rooms…to go over the results of various assessments, listening to the numbers that describe my son.
I’ve left meetings, only to replay the conversations in my head, trying to stay positive and put the scores behind me. The numbers and scores for my son, Charlie, are always associated with significant delays and deficits.
My son’s diagnosis alone is defined by a number, Level 2 Non-Verbal Autism.
After every meeting for my son, I immediately ask myself why it hurts so deeply to hear the numbers and scores again.
It’s not my first time hearing it, I’ve heard it all before.
I know by now what to expect in these meetings, and I mentally prepare myself for days leading up, yet the sting is ALWAYS there. It is soul crushing and takes by breath away each and every time.
My husband and I love Charlie more than anyone on this Earth, the scores he receives on evaluations will never change that. Yet, I mourn each time, after hearing them.
I spend days reverting back to the “grief” stage of special needs parenting, and that is a hard place to be.
Then after time, I manage to find my way back again. I remind myself that what matters the most about my son can’t be measured or assessed.
Charlie is a true medical miracle twice over.
He entered this world via emergency C-section due to a placental abruption. The delivery room was packed with doctors and nurses all working frantically to save him.
I can still hear the nurse’s voice that said, “We are trying everything we can to keep him alive.” Charlie’s first days on Earth were spent in a NICU.
At the age of 4, he took a hard fall in our home and suffered a brain bleed.
He survived an emergency craniotomy. A doctor placed her hands on my child’s brain to save him.
There are no rating scales, IQ tests, or assessments that can measure the strength, resiliency, and fight my child has inside.
He is the bravest child I know.
Charlie’s love for the simple things in life is refreshing…
A swimming pool is Charlie’s happiest place on Earth.
Sunny days outside bring the biggest smiles.
Sour candy and spicy foods are heavenly.
Hands down, Charlie gives the best kisses and hugs.
The simple joy of a stick he finds in the yard.
The smile on Charlie’s face when he sees his favorite teacher.
These are what matter most in life.
The scores Charlie receives on evaluation reports cannot measure happiness, love, or joy.
Charlie is blessed to have an amazing support system filled with family, friends, teachers, and therapists that love him.
He is changing the world for the better just by being himself. Charlie has taught my family to celebrate each and every accomplishment, no matter how big or small it may be.
The world of special needs parenting is not for the faint of heart.
Special needs parenting is brutal and tough. It will break you down, a million times over. I undoubtedly have days where I question my strength. Many days I question my sanity, and despite all the hard, I’ve learned and grown so much.
Charlie’s my living proof that miracles happen every day.
Twice Charlie has beaten all the odds against him, and he will continue to do so.
The resiliency and strength of my son cannot be assessed by any type of rating scale, test, or assessment.
My son is loved beyond measure, and that is truly all that matters.
Written by, Abbie Summers
My name is Abbie Summers. I am the mother of two amazing kiddos. My 5 year old son Charlie has Autism and my daughter Jordan is 2. I am a wife, counselor, and educator.
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