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Holidays on the autism spectrum

Holidays on the Autism Spectrum

For many, this time of year means traditions, big meals, and gatherings with extended family. It can be a time of celebration, connection, and joy. However, holidays on the autism spectrum can be a very difficult time. This is especially true when you and your family are still adjusting to a diagnosis.  When your child doesn’t understand or fully participate in the traditions you hold dear it can be hard and all of the changes can be difficult for your child. 

We know not all of our readers celebrate Thanksgiving or get pictures with Santa, but we hope that sharing Alexis’ story gives you hope and comfort through whatever holidays you cherish this season.

Positive memories

When I was a kid, Thanksgiving meant all of the cousins playing together for hours while the adults did adult-y things.  We ran, chased and played games. The eventual sadness came when the day was over and it was time to go home.

Now that my cousins and I have kids of our own,  we all still get together for Thanksgiving. It’s fun to watch the kiddos play with each other just as we did.  However, there was a time when I dreaded the approaching holiday season.

When normal is exhausting

At Thanksgiving, while all the kids were running around and playing hide and seek, my kiddo would be by himself. He wouldn’t engage with the other kids.  I’d spend the day making sure my son wasn’t trying to climb up furniture or try to eat something random he found on the floor.

My husband and I would be on hyper-alert, watchful in case our son decided to sneak out a door into the snow or get into the million other things that weren’t child-proofed like they were at our house. I wouldn’t get a chance to catch my breath, chat with my grandma, or enjoy a glass of wine.

I’d leave the festivities emotionally wiped. It’s so hard to see your child so drastically different from other kids. Initially, I’d get excited for the build-up to the holidays. Then came the realization that my child didn’t fully understand what the excitement was all about, nor did he really care to participate…. and it broke me.

My Santa Secret

It was devastating to see the kids waiting patiently in line ready to visit the mall Santa, while I had to hold on to my boy with all my strength because he was wiggling in my arms, screaming and dying to get away.  Then actually willingly sitting on Santa’s lap? Forget it.

Recently, I looked back on the mall Santa photos..the first one in 2014, my guy was 2 weeks old. The year later, he was a darling little one year old. 2016 rolls around and you can visibly see that something had changed in my kid.  (My son is one of the kids that “regressed”…in our case, around 14-18 months we noticed a big decline.)

Last year’s Santa pic was such a cluster, that I actually jumped in to hold my kid still for a photo. Enjoying holidays on the autism spectrum can be easier when you compromise and adjust your expectations. Make something work for you and your child as best you can.

You’re probably asking why the heck I continue with the Santa pictures?! Well, each year, I secretly hope that this is the year that we’ll get a good photo… and at least in photos, things appear…dare I say, normal?

Hope and Gratitude

In May 2017, my kiddo got his ASD diagnosis.  By June 2017, we were full-on biomed, an approach to treating the medical symptoms of autism. The goal is to increase health and quality of life.

Over the last year and a half, I’ve seen my son grow and achieve so much. He was able to make this progress because parents – also with special needs kids-  took the time to share their stories of recovery, giving me hope. Their experiences with autism treatment helped me understand our options. In turn, pointing us in the direction that made sense for my kid. For that, I’m eternally grateful.

My son’s speech is exploding, he’s following two-step instructions, he’s able to match and sort and use the language he has to get most of his wants and needs met. He’s sleeping like a rock through the night and he’s almost fully potty trained.  HE’S PLAYING WITH HIS COUSINS!

This is the first Thanksgiving (and holiday season, really) since before my son was two that I’m actually looking forward to. I feel like we’ve turned a corner and my son is heading down the path to recovery. I know his language is lagging behind other kids his age, but he’s making steady progress.

He probably won’t sit down to eat for the duration of the big meal, but that’s pretty typical for kids his age. Sitting still is hard when you’re 3! I’m not sure if he will understand all of our family traditions this holiday season and our holidays may still have their challenges. I will be doing my best to stay present, relax, and enjoy the season.

I have so much to be thankful for this year.  And it feels good to finally be at this point…so good.

New Traditions

Perhaps you aren’t in a place where you’re looking forward to the holidays.  There are so many parents who are right there with you even if they aren’t talking about it. We’ve been there too.

What helped me in the period of time between the decline, diagnosis and eventual improvement in my son’s symptoms through autism treatment was making new traditions of our own.  

Last year, we stayed home in our jammies for Christmas instead of dashing off to auntie’s house in fancy holiday clothes. The kids actually got to relax and enjoy their gifts instead of being plucked away to go have Christmas dinner elsewhere.  

We did Easter a little differently than in years past.  We opted out of the 4th of July neighborhood parade and went swimming instead. All of these alternatives were fun for the kids and honestly a lot less stressful for us too.

Initially, it stung a little to not do the things that we’d done previously, but we were able to adjust and create a new normal that worked for our family.  

My wish for you this holiday season is that you find your new normal, even if it’s just temporary. Lastly, please remember that it’s ok to be disappointed…as long as you don’t lose hope.  <3

Hang in there,

Alexis

2019 UPDATE:

Since this post was written in 2018, Squishy has made undeniable progress.  We spent a little over a year treating the virus that caused inflammation in his brain and compromised his immune system.  Now that the virus is behind him, we have shifted our focus to treating his mitochondrial dysfunction. 

Through the implementation of a customized mito cocktail, we’re able to support his body on the cellular level. (Think of it like putting premium gasoline in a car – the car performs better!). When his body is properly supported he thrives.

Since last Thanksgiving, Squishy has shaved 14 points off of his ATEC score. He is fully potty trained and is using 3-5 word sentences.  He’s able to answer questions, express his feelings and ask for what he wants.  Fine motor skills are improving and new interests have emerged.  He’s so much happier! 

We’re thankful that we were able to uncover the root causes of his issues and address them. This was possible because I learned about our options and about the testing we needed to do to give us a direction. We were able to do this through collaboration with skilled providers and with the support of other parents to keep us going. 

Our hope is that you’re able to uncover the puzzle pieces for your child and that you too can be celebrating a year of progress and growth. More than anything we want you to know that there is hope. We’re here to support you along the way. 

Wishing you and your family joy, health, and happiness. . .

Alexis

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