My story as a Grandparent of a Child with Autism

When your kids get older and become adults you start to think about what their life will be like.

You start asking yourself questions like “who they will marry?”, “how many kids will they have?”, and “did you do a good enough job raising them?”

At least these are the thoughts that I had run through my mind as my children began growing up.

I had all these thoughts of what their spouse would be like, and how their wedding would be, and if they would always need me or not.

But a thought that never came to my mind was that I would have a special needs grandchild, or better yet, that my son’s first child would be special needs.

I have heard of autism before my grandson was born, but I didn’t really know about it.

Growing up in the 80’s the movie Rain Man was a huge hit, and all I can remember was the character Dustin Hoffman played was autistic. But that’s as far as I really knew about it.

I remember the first time I noticed that something was different about my little guy. I couldn’t put my finger on it, but I just knew it.

I’m sure there are a lot of you that are reading this and had that same exact moment. As a grandparent, you are limited in some areas when it comes to your grandchild. This was another area of life that I didn’t know would be a thing until now.

I remember looking it up online and seeing that some of his behavior was on the “Autism Spectrum” list. Such a strong phrase, such a little guy. By the time he was two years old and went for his annual checkup, this word came up again. This time to his parents.

Appointments followed, specialists followed, and finally the diagnosis followed. 

I got that diagnosis via text message from my son that day. “He has mild Autism with a speech delay.”

I felt overwhelmed and at the same time went into immediate mama bear mode. I don’t think that the mama bear mode ever turned off, but instead it’s now been changed into grandma bear mode.

He was fortunate enough to get into a program within a few months and began ABA therapy right away. All these new words we had to learn, while he was also learning new words of his own.

Speech Therapy, Occupational therapy…all these new areas that I never once thought about when I would daydream about my grandson while waiting for his birth.

Being a woman of faith, this was a struggle that I had to come to terms with.

Why us? Why him? Fix it God, Fit it!

The more I would research on my own, the more I would find more families, the less I would feel alone.

The hardest part of all this is that as a grandparent, you know that your own child is going through it and all you can do is stand by.

Sure, you can give words of encouragement, and help as much as possible. But that is it. They have to go through it. You will accept it much faster than they will. But you have to wait. You have to wait on their acceptance of the word “Austim”. You have to wait on this being a normal part of their life, not yours.

You have to sit and wonder in private, “will they ever be ok?” You have to make sure constantly to let your child know how much you love them, and pour that same love over on to this beautiful child too. 

This has been a journey. Ups and downs, twists and turns. We are all growing and learning. It has not been easy. It has been hard, really hard.

But it’s been beautiful.

Seeing him go from saying no words, to saying “I you,” which is I love you to him. To also saying “good morning” and looking straight into our eyes.

Man, who would have thought that looking into someone’s eyes can mean so much.  

I look back a year and a half later, and I remember when I would ask God to “fix it,” and I see it now. I see a miracle every time he does something new.

When he conquers that something we wondered if he would ever be able to do. I see God’s work through him when he gives me a hug and a kiss, or when he runs to give his Daddy a hug when he gets home from work and says out loud “Daddy” in his own little voice. 

Before he was born, I remember being at a theme park and meeting an older gentleman who was there with his granddaughter.

I told him how excited I was to become a grandmother later on that year and I didn’t know what to expect.

He told me that day that “grandchildren are the dessert of life.”  

I’ll never forget those words.

My little guy is exactly that. He is the cherry on top.

With all the wonder in his eyes and all the love in his heart.

Now I pray that he never changes. That he keeps that beautiful spirit alive that is inside of him that the world could be more like. I pray I get a chance to see the world the way he does.

His love is exactly like a dessert. It fills the house when he is there. His love reminds me of fresh soft baked cookies right out of the oven.

He is the dessert of my life.

Written by, Tatiana Castrillon

We are a new family to Autism. We are learning to embrace our journey and seeking other families to walk alongside of. 

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.