My Son, You are Not Your Hardest Parts
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To my son Cooper,
Today was a really hard day buddy.
Today was that one day out of the year where mom and dad have to talk about all of your hard parts. The uncomfortable parts. The parts that scare us and worry us. The parts we want to hide from the world.
We have to list them out. And explain them in detail.
We are told to describe your worst day.
It’s so awful because we don’t ever let your hard parts or your cannots define you. We don’t let anything limit you. We never will.
But today, we had too. We do it so you can get benefits and services to help you grow and thrive. We do it because it’s required. A nice lady came over and we went through it all. From beginning to today.
So much has changed since we heard the word ‘autism’ for the first time. So much hasn’t.
It took three hours to cover everything. For some reason that duration of time stands out to me.
Three hours to explain a life. To explain the boy with the yellow hair who smells like the wind.
We set goals. We discuss what you want and need. How we can all help you succeed.
Then the hard. The parts we need help with.
The little boy we describe almost seems foreign to us. We feel like traitors at times. Like we are describing someone else’s kid.
Even after 14 years I wonder how we got here. Right here. Talking about self-injuring, hitting, kicking, medications, IQ scores, and aggressions.
My body wants to run from the hard. To never bring it up. To never talk about this stuff. But in the special needs world, it’s the norm.
There are no secrets. No modesty. This is what we have to do.
After, your dad and I feel depleted. The past, present and future summed up in a few pieces of paper. And I’ll tell you this bud, if you could read, you’d know it does not look good.
It’s not pretty...this evaluation stuff. It’s awful really.
But here is what I need you to know my son...here is what matters.
You are not your diagnosis.
You are not the sum of different numbers added up that equal your level of severity.
You are not a number in the department of health’s website.
You are not your worst day.
You are not an insurance code.
You are not a sad story.
You are not limited by anything.
You are not self-injuring, aggressive behaviors, anxiety, adhd, intellectual impairment, apraxia, or autism.
You are not a mistake. You are exactly who you are supposed to be.
You are Cooper. You are 14.
You are loved and treasured.
You are smart and funny.
You amaze me every single day.
You love trains, penguins, paper, your blanket, Starbucks cookies, and your mom.
You are growing up.
You are going to change the world.
You always take your shoes off when you come in the house and put your plate in the sink when you are done eating.
You know how to put your coat on all by yourself. And drink from a cup.
You are learning to say some words. The ones that matter really.
You want to go on an airplane and see an elephant.
You took the Amtrak to Chicago this year.
You have two best friends.
You love holding my hand.
You can say the alphabet although I am the only one who understands you. It’s perfect by the way.
You love to be tickled and teased.
You are everything and more.
You are not your worst day Cooper. Far from it kid.
You are the best day.
I am so thankful to have you.
I am so proud of you. And I can’t wait to see what the next year brings.
Love,
Mom
Thank you all for being here with us on this journey. I want to remind you that you are never alone. There are so many of us out here, walking along, hand-in-hand. Look for the helpers as they say. We are out here.
Merry Christmas
Kate, he is definitely NOT his worst day!! I remember going over all that with my daughter for my grandson. He is officially off an IEP, which I didn't agree with, but my daughter got bullied by the schools and thought she was to old to bring her mom. I was so upset, even though I was so proud, but tell me, how can he be off an IEP, when he, at 14 can't tie his shoes? Still to this day, does not hold a pencil correctly. (but that I guess doesn't matter cause he has actually decent writing) and I know his muscles are not, well I don't know. I call him squishy. I love to hug him!! I know he still needs occupational therapy. He does not have good dexterity in his hands. He is an old man in a young child's body. My first granchild and the light of my life!! Cooper is your son, and he is exactly who is he's supposed to be. Don't you know, God doesn't make mistakes!! Happy Holidays to you and your family and you go momma!!💜💜
You are the most loving mother. My daughter in law is also. She fights for my grandson in every way. My son also fights for him.My grandson is so loved sometimes I wonder how they do it. They are so strong and loving when you say about Cooper that he’s exactly where he’s supposed to be I believe it with all my heart.