A Story About a Boy

Max Richard is my son. On November 7th, 2012, he was officially diagnosed with Mild Cerebral Palsy. At the time, it was like the life had been taken from my body. Like a dream I couldn’t wake up from.

Max began to make improvements with therapy but as of August 16th, 2013, he was not talking. Flash forward to today.

He is still not talking. Things have changed in our life. I got new job. We moved. Max has a baby sister Samantha.

Still no talking. I’m not going to lie and say it hasn’t been difficult. It has. It is the hardest thing that has ever happened to me, the hardest thing I have ever gone through.

My father died when I was 15. I almost died when I was 20 after having spent two months in the hospital. This is harder than both.

After three years of being told he will talk when he is ready, my wife and I finally got some real answers. We went to Boston Children’s hospital and Max had a neuro-psych evaluation. For some time, my wife Ashlee and I had our concerns that there may be something else going on with Max besides the Cerebral Palsy.

As we read about Cerebral Palsy, the signs and symptoms all lined up with what we were experiencing with Max. But there was other stuff going on. He did not really respond to his name. He did not play with toys in the traditional way.

While he loves to be around people and kids, he is not active in playing games with them. And of course, being nonverbal.

Our initial thought was Autism.

We asked several of his therapist and several doctors. They all seemed to think that it was the C.P causing these things. In my research of autism, I did notice that these symptoms were present in Max.

The biggest difference was the social aspect. Max loves to hug and kiss. He is very affectionate and loves attention. Maybe it is just the C.P. But enough had been enough. We needed answers.

And on March 18th 2016, almost four years since he was diagnosed with Cerebral Palsy, we received a new diagnosis; Autism.

I think when you first are told that you are going to have a child, you just hope that everything is OK. But for fathers, when they are told they are having a son, you begin to imagine doing all the stuff that you got to do with your own father.

Or if you didn’t have a father, you imagine all the things you will do with your son that your father didn’t do with you.

I found out I was having Max on December 23, 2010. One of my favorite students played me a song by Brad Paisley called Anything Like Me. It talks about all the things that the father and son will experience.

I listened to it about two million times before Max was born.

Some of the best memories I have with my father are of me and him, just being together. Like when I was six and he took me to see the greatest basketball team of all time, the 1986 Boston Celtics. He dismissed me from school and we ate lobster in Boston before the game against the Sacramento Kings.

Or when I was 12 and we went on a Tuesday night to the movies to see Rudy because of how much I loved Notre Dame Football. Or the last movie we saw together, Get Shorty, another dismissal my freshman year of High School.

I will never forget the day before I started High School. We went to lunch at the El Morocco, went to the mall and bought all my school clothes, and he taught me how to tie a tie. I cherish those memories.

But the most important things I carry are the times playing catch in the backyard. Shooting baskets in the driveway. Watching The Red Sox, Celtics, Patriots, or any boxing match we could get on Pay per View.

Or my favorite; laying in his bed, and having him tell me stories about his life, or about any subject that I wanted to know about.

I thought about all this those months before Max was born and couldn’t wait to be able to do the same with him. I want you to know, I love my son more than anything in the world. I would die in a heartbeat so he didn’t have to feel one once of sadness or pain.

I read a lot of blogs and articles written by parents of special needs children. They all end the same way; they wouldn’t change a thing about their kids. And I get that. I really do. But I would be lying if I didn’t say my heart is broken over our situation.

I am angry and frustrated and sad and scared. I feel helpless on good days and useless on bad ones. I can’t help but feel I had so many dreams ripped away from me.

Watching him play organized sports are gone. Being a typical kid is gone.

There is a good chance he will never live on his own, never go to college, never get married and there is a good chance he will live with me the rest of my life.

And I can live with all that.

But to say that it hasn’t broken my heart is not the truth. It has.

The worst feelings are the ones I get when it is well after midnight and I haven’t slept yet. I have to get in a few hours for work and I stare at the ceiling. I think about his safety. Will kids be mean to him? Will they hurt him? How long can I protect him?

I don’t want to cry or yell. I just want to vanish.

And that makes me feel guiltier than you can possibly imagine. I once heard someone say it’s a cash and carry world. Pay as you go. Sometimes you only pay a little. Mostly it’s a lot. Sometimes, it’s all you have.

I never cared about being famous. I am the furthest thing from materialistic. I am not the smartest guy or best looking guy you will ever meet.

All I want is to hear my son call me Dad. I’ve waited four years so far. I’ll wait four hundred more if I have to.

I do not want this post to be negative. I understand that some people have it way worse than me. I know how lucky I am to have my son.

Anyone who knows him knows how much happiness is in him and how much joy he brings people.

As hurt as I am, I would not trade Max in for anything in the world. Sometimes, I just don’t know what to do.

So I think of a quote from my favorite movie Shawshank Redemption. Andy Dufrense says it best. “It comes down to a simple choice really. You either get busy living or get busy dying.”

After four years of waiting, four years of hurting, I think it’s time to get busy living. We are on a path now. Max will finally get what he needs and what he should have been getting all along.

I am hopeful that one day I will walk into my house after school, like I have done his whole life so far. I will say hi buddy like I do every day. He will look up at me and smile like he always does. But in this scenario he will say ‘Hi Daddy’ back.

On that day, there will never have lived a richer, happier person on earth.

I think often about what I have gained and what I have lost. I always thought I was strong. My favorite trait is perseverance. Max has taught me more about that word than I ever thought I could have learned. I couldn’t wait to teach my son everything about the world.

What I didn’t know is that I would be the student and he would be the teacher.

‘Keep on when your mind says quit, dream on to you find you’re living it, I’ll be right by your side.’ Eric Bibb

Written by, Ross Abdelnour

Ross is a high school English teacher at a technical high school and also a high school basketball and baseball coach. He’s a proud dad to Max, 7, who has Cerebral Palsy and nonverbal Autism  and the sassiest 3 year old Samantha.

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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 and subscribe to our newsletter.