Before Autism
As my youngest baby’s first birthday approaches, I find myself thinking a lot about Cooper’s early years.
He’s almost 9 now. If he went to public school he would be in third grade. A big boy.
Double digits not far off.
I look at this photo and I remember the desperation I had back then.
The worry, fear and dread rolled into one fake smile plastered on my face.
In a way my memories are starting to dull. The details not quite as sharp. The pain and worry not quite so intense.
I think the human brain has a way of doing that to help us maintain our sanity.
I remember we never slept. I remember we had to work really hard to get smiles and giggles.
He seemed to dislike almost everyone, paying them no attention and running away. I’d make excuses. I dolled them out like candy.
I remember the screaming. So much screaming. In the car. In the stroller. From his crib.
Back then I couldn’t figure out why he could never be content. Why his brain seemed to never shut off.
He never stopped moving, yet never really ever playing. More wandering with purpose. I used to joke that he was always busy doing everything and nothing at the same time.
I remember hoping for snuggles and hugs and words and high fives and waves.
I remember the exact moment I realized he was different than my friend’s kids. And the exact moments other people started noticing too.
I remember begging my husband to see it too.
Saying, ‘something isn’t right Jamie’ late at night after one too many glasses of wine. I remember the look he would give me. Like I was a monster. I felt like one too.
I remember when he found Barney and Thomas the Train on television and we thought we hit the jackpot. Barely walking, tuned in and happy. Until we realized we could never shut the tv off.
I will never forget the failure I felt for so many years. I could not get my child to speak, or sit or play. And I couldn’t seem to make him happy. No matter what I did.
I remember when it got really hard. We couldn’t leave the house.
We were controlled by the 3 A’s: Anxiety, Autism and ADHD. No one outside of our world understood.
So, we retreated into our home. It was easier that way. No judgement. No shame.
I often say our world is divided into two distinct parts. Before autism and after.
A hard line drawn through our world. We stepped over into it and left so much behind. Willingly. Our only purpose to help him. To make it all better.
Thinking, the more we do now, the better this will get. Only, sometimes it doesn’t work like that. Not for a long time. And not one person told us that.
Not one person told us how hard it would for so many years. Almost breaking us into two. The grief pouring out at times. Ups and downs. One step forward and 3 steps back. The word regression chasing us around at all times.
When I look back at photos from before, I get sad. It hurts so much. I see my little family and I hardly recognize those people.
Some days I wish we could step back over that line just for an hour or a day and remember time before, without this weight. But it doesn’t work like that. This is our world now.
I spent the last hour digging into photos from his first year. The most beautiful baby. Before autism. Before we knew.
I am overwhelmed with love. And I am so unbelievably proud of how hard he has worked and how far he has come. How far our family has come.
Don’t give up moms and dads. Keep pushing. Keep trying and hoping. Don’t ever give up.
At age 8, we can breathe now. Our son is happy and thriving and healthy. We made it. And you will too.
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