Realizing this is Forever

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I always knew Max was going to be different. From the moment I found out I was pregnant I had this feeling I can’t describe.

I had an amazing pregnancy, I loved being pregnant so much. It really is such a miracle and I didn’t take one minute of it for granted.

Then he was born, my labor was tough with him but everything still “seemed fine” and we went home two days later.

He was an incredible baby, I’m not exaggerating.

He was a great sleeper, he nursed with no issues and he had been described as the happiest baby by many people that met him. But still, I had this feeling something just wasn’t quite right.

Time went on and he stopped hitting the milestones I read about in the parenting emails I subscribed to when I was pregnant.

I would bring up at his well visits that he wasn’t sitting up, pulling to stand, barely used his right hand and of course he had no words. His pediatrician would continue to tell me he was just lazy and that he would do things on his own time.

Even though this sounded fishy to me I figured if my doctor is saying it he knows more than me and if I’m being honest I didn’t want there to be anything “wrong” with my perfect baby so if he said Max was just fine I didn’t push back.

As time went on, things still weren’t really progressing with Max.

Finally at 17 months, Max was diagnosed with Mild Hemiplegic Cerebral Palsy. I thought to myself, OK now we have answers. I looked up all the therapies that help CP, so we started our therapy journey.

Fast forward two years later, Max was still not talking, not toilet trained, not playing with toys or his peers. I would ask every therapist, teacher or specialist we met if they thought Max had autism.

The answer was always the same.

Nope, he’s too happy to have autism.

I was beginning to feel frustrated and defeated. I was desperate for answers, in my heart I knew it was autism.

At this point it wasn’t about a label, I just needed to get Max the help he needed.

At the advice of a good friend of mine I scheduled an appointment at Boston Children’s Hospital for Neuropsych evaluation. We waited nine long months.

I remember making lists of behaviors Max had that “looked” autistic. I actually took a video of him rocking on the couch.

My husband said to me gently, “don’t worry Ash, they’re going to see it”.

Finally we took Max, although we didn’t get the official report or diagnoses that day the doctor did tell us that she knew the moment she said hello to him she knew he had autism.

Two weeks later, just my husband and I went back to speak to the Dr about the results of the evaluation. She confirmed our suspicions, and for the first time in almost 5 years I felt validated and heard.

It was so painful to hear that my son had autism and Global Developmental Delay and that his life was going to be much harder then I could ever imagine; but in that moment all of the behaviors and questions started to make sense.

We talked about our next steps, and what the future could look like for Max. I remember sitting in that office and for the first time in awhile I was feeling hopeful for Max.

I said “maybe one day Max will work in a grocery store, he loves grocery stores.”

But as I said those words I felt something else wash over me.

In that moment, I saw all of the dreams and visions I had for my son disappear. It sounded so sad to think that a grocery store was the best I wished for for him.

It was that moment I truly realized autism was forever. This is our life.

I want to make it clear, I am Max’s biggest cheerleader. I would be so proud of him if he ends up working in a grocery store someday; it’s just a hard pill to swallow knowing sports, college, marriage and children probably aren’t going to be a part of his future.

Three years in, Max is making great progress. It’s amazing to see his growth actually.

He still isn’t speaking yet, but he’s becoming more fluent with his speech device every day.

He works harder than any person I’ve ever met and he is always smiling. He truly is amazing, and now my hopes for him is some kind of job in a kitchen.

Max loves to be my sous chef and helps any opportunity he can in the kitchen.

Written by, Ashlee Abdelnour

Ashlee is a medical coder and proud mom to Max (7) who has Cerebral Palsy and nonverbal severe Autism and Samantha (3) who is sassy, sweet and her brothers biggest fan.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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