Coming to Terms With an Autism Diagnosis

My four-year-old son loves snow. He’s been watching Christmas movies since July and as soon as the leaves started to turn shades of red and orange, he’s begun every day by racing to the window to peer outside.

“Nope. Not today, Mom. It’s still summer,” he sighs, disappointed in the green grass and sunny skies. (He did not get his love of winter from me, that is certain.)

By Halloween, his snow shovel was standing proudly on the deck waiting for the first few snowflakes to gather. He’s asked to get dressed in his winter gear more than once “just to make sure it all works, mom.”

It’s safe to say that snow is his favorite thing.

Last week, while Jax was in the hospital with pneumonia, he didn’t miss a beat. “I wonder if it snowed today, mama,” he said every morning. It was only slightly sad to see his disappointment because it was just like any other day without snow.

Except, it did snow, for the first time, while Jax was in the hospital.

Rather than see his heartbreak and have to calm his anger, I kept the shades drawn and made a note for the door “Do not talk about the snow outside!” I wanted to protect my son from the harsh reality that he simply was not going to be able to play outside during the first snowfall of the season. My mama’s heart was already weary from seeing him back on oxygen support and I didn’t want to see sadness on top of sickness.

I hid from what was happening right outside the window.

I’ve been hiding from something else, lately, too.

Logically, I knew Jax was at a higher risk for Autism Spectrum Disorder (ASD) because of the factors surrounding his premature birth. But I wanted to keep the shades of truth drawn and hide from that statistic. So when he was referred for an evaluation, I secretly hoped that the process would reveal that I was a shitty mom and blame me for Jaxson’s behavioral and social differences. I steeled my mama’s heart and prepared to handle that assessment because I could change.

We got the results last month. Jaxson has Autism Spectrum Disorder.

I’ve processed this news differently than usual. Most of the time, I process things by laying it all out on the line with you. Writing helps me make sense of things in a way that is impossible for me to do otherwise. When I write and press publish, it’s like the Universe helps gobble up some of my stress and anxiety.

This time, it took me a while to gather up the courage to tell you about this diagnosis. Maybe it’s because we have been working under the pretence that Jax would eventually “catch up” to his peers. A pervasive disorder like ASD means that he might not ever catch up to his peers. That’s totally ok with us, but it’s a hard switch to make, in my head and in my heart.

The label of ASD does not change Jax. His smile still lights up the room and the laughter that bubbles up from his soul is contagious. He’s funny, kind, creative, and I could not be any more proud to be his mama. What the diagnosis does do is open up avenues of support and resources that will help Steve and I be the very best parents for our little boy.

In the hospital, I finally decided to open the curtains and show Jax the truth about the snow. He was sad and cried giant crocodile tears. “My shubel, mama! I need my shubel,” he wailed. Luckily, right then, the doctors came with his discharge papers.

“We get to go home, Little Buck!” I said with a smile. His face lit up with excitement, he was going to get to play in the snow after all.

“Mama! Look – it’s beautiful,” he said as he looked out the window again.

Jax never fails to remind me that a change in perspective is often all it takes to recognize the beauty right in front of me. I know he will continue to show me the way as we celebrate his strengths and support his growth. ❤

 

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Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

7 thoughts on “Coming to Terms With an Autism Diagnosis”

  1. Wow. What an entry. It’s evident that you’ve continued writing consistently, as your voice is stronger than ever in the written form. I’m so sorry to hear about the recent hospital readmit and that you are navigating his diagnosis of ASD. Perspective is EVERYTHING and Jax has given you the greatest gift in offering that lesson stronger than anyone or anything ever could. It continues to be a grounding force in my own life and with Luca albeit the intensity and trauma has slowed down. It reminds me of my favorite quote from Viktor Frankl, renowned psychologist/holocaust survivor:
    “Everything can be taken from a man (or mama!) but one thing: the last of the human freedoms, to choose ones attitude in ANY given set of circumstances, to choose one’s own way.” I hope you all have a peaceful holiday and I’m sure Jax is loving the fresh snow of last night!

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  2. I totally understand it’s been hard receiving thsi diagnosis. Take yoru time to process this. Jax is still Jax no matter what.

    On a totally different note, as a preemie, I wanted to thank you for pointing out the risk of autism in preemies. My psychologist removed my autism diagnoss (that I got in 2007) last summer, claiming it’s all normal for a preemie with hydrocephalus. I understand that you as the parent would rather have your child had a condition that would go away, but I as an adult already realized it wouldn’t go away. As a result, for me my diagnosis came as complete relief and losing it caused a grieving process too.

    As a side note, I hate snow, but am so cheered up by Jax’s love of it. His smile cheers me up even through the Internet.

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  3. It’s ok. There is a grieving process that has to happen. Your expectations of his future has changed. But that doesn’t mean he won’t eventually have all those things…it just might take a little longer. I didn’t know what Michaels future was going to be when he was diagnosed. But now I expect him to one day live independently, to be gainfully employed, to have relationships and maybe get married and have children Some day. He may never drive a car, but that’s ok. He is learning the city bus and LRT routes. If you ever need an ear, I’m here. Even if it’s just to vent. You are doing a great job with him, be kind to yourself, you deserve it.

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  4. So much of what you’ve written here resonates with me – particularly paras 12 & 13 . I hope me bearing witness helps to gobble up some of your natural mum stress and anxiety. Your heart is true and you could not be more honestly engaged with your journey. There is NO WAY you’d get a “bad mum” diagnosis, sorry :-(. Have a wonderful white Christmas and I hope you guys stay out of that hospital xo

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  5. I know that feeling well. My son was 2 1/2 when we received his diagnosis. The “my son doesn’t look like someone with Autism” was a frequent thought.
    It took us a while to accept our sons disorder but we loved him as much as ever. We got involved with Special Olympics since he LOVES his sports! I can honestly say he excels at sports. No he’s not Michael Jordan but he always gives 100% which is all I ever ask – and that you have fun. My son is now set to move on from high school and we have new challenges ahead of us. Good luck in all you accomplish with and for your son! It’s a wonderful journey that makes us as parents such better people. Don’t give up! My motto has always been – if you don’t push them a little you’ll never know how far they can go! Don’t let anyone tell you differently. You know your son best!

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  6. Every diagnosis is hard to receive, even those you’ve expected or known all along. I’m sorry, Mama. You are the absolute opposite of a shitty mom! At least you can hang your hat on that. And you are right–a diagnosis doesn’t change the fact that Jaxson is a sweet, adorable, fun, cute, loving child. You can hang your hat on that, too. Sending your aching heart big squeezy hugs. Hang in there – ❤

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