The Lessons We Learn Along the Way
I read a quote today by Shakespeare. “I cried when I had no shoes, But I stopped crying when I saw a man without legs…”
Wow, did that hit me hard.
I want you to know that I was devastated when my son was diagnosed with autism. I am a big enough person to admit that. I couldn’t understand how or why. Why him. Why our family. Why.
And, I even knew it was coming.
I’d done my research. I saw the writing on the wall. He wasn’t talking at age three. No babbling. No words. Nothing.
He had absolutely no imaginative play. The only activity he enjoyed was watching Barney and Thomas. He gave a new definition to the word rigid.
We were involved in early intervention with the school district. We’d talked to our doctors. We’d made our concerns known.
People were starting to notice. Our son was not like his peers.
So, I guess you could say that the diagnosis wasn’t a surprise. The feelings were though.
I immediately felt different. I felt exhausted and motivated at the same time. I wanted to help him. I wanted to run away. I wanted to shield him from the label. I wanted him to be okay. I wanted him to lead a normal life.
I wanted to know what the future held. I wanted someone to tell me what his autism would be like as he aged.
I wanted to know that this would get better. And of course, what to do.
Essentially, I wanted a crystal ball.
I slowly learned that our life was different. That everything we knew needed to change. That we didn’t fit neatly into a box anymore. We needed accommodations. And exceptions. And patience.
As Cooper aged, around four and five, it got harder.
Reality was setting in. Autism wasn’t just a word or something we talked about every April. Autism was our life.
I learned that my son was nonverbal and that some people stay nonverbal for their whole entire lives. I learned that he had Apraxia and an Intellectual Disability. I learned that public education wouldn’t work for him. Or that no matter how hard we worked we could never, ever afford his healthcare costs without help.
I learned that there is no ‘one size fits all’ when it comes to helping kids with autism. And that the spectrum is huge.
I learned he was severe. I learned that autism doesn’t go away. And that it lasts forever.
I learned that the world isn’t always nice to kids with disabilities. Or their families. That everything can and most likely will be a fight. I learned that my son was a statistic. That we no longer had any secrets. And that I would have to prove that his autism was severe in order to get help. Continuously.
I learned that we lived in a secret world. One that most people can’t understand. Or refuse too.
I learned about fear and worry for the future.
I learned that autism was now the driving force in our life and that we had very few choices with the right one being…’get on the ride and hold on.’
I also learned about grief and how it is not a linear path. I was grieving the typical child and the typical milestones and accomplishments that he would most likely never achieve, yet he was right in front of me. I grieved easy. I grieved the future. I grieved our reality. And until you live it you will never understand.
For a long time, no one knew how sad I was. I was Super Mom on the outside. Tirelessly advocating for my son. I of course loved my son more than life. But at times, the pressure of how hard every day was accompanied by the idea of ‘forever’ would wear on me. I’d cry in bed after he was asleep. I’d cry in the shower. I’d cry on my drive to work. And I’d cry behind my sunglasses.
I felt robbed. I felt like I was missing out. I felt like the Shakespeare quote above. I was missing my shoes.
What I felt wasn’t wrong. It’s important for me to note that because I believe those feelings were normal in the beginning.
I will never tell you that having a child with special needs is easy. I won’t sugar coat it. I also won’t tell you that others have it harder and that you shouldn’t feel sad. I am not that person.
I won’t tell you that I’m done grieving either. That I don’t ache at the sight of a typical seven year old boy playing football. Or reading. Or telling a story. Or singing a song.
I don’t know if that pain will ever go away. Sometimes I pray that I go numb to it. Sometimes I pray that I don’t.
I still lie awake at night wondering if I will ever hear my son speak. If he will ever have a typical life. And who will care for him after I am gone.
But, I am different now. Something changed for me over the past few years. I won’t say it got easier because that would be a lie. Maybe I got stronger.
But what I will say is the my son, the same one who may never speak, or make a friend, or graduate high school, or move out, is my greatest treasure. I thank God every single day for him.
I used to feel sad because my son was severely autistic. But I stopped when I thought about a world without him. Or I heard stories of parents losing their children.
I may not have my shoes, but I sure as hell have my legs. I have the most amazing son who came down the stairs this morning carrying 4 blankets, 7 Pokemon cards, 2 Uno cards and a photo of me. He was all smiles and gave me the biggest wave. He ran over and crashed into me.
I am the luckiest mom in the world. And I truly believe that. I have the most amazing child in my life.
I know how blessed I am to have him. I don’t have to be told twice.
Yes it’s hard. I won’t tell you it’s easy either. I won’t lie.
But loving him is what I was put on this earth to do. And that part is easy.
“I cried when I had no shoes, But I stopped crying when I saw a man without legs…”
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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.
