Ellie’s Diagnosis | Tourette Syndrome

When Ellie was between 1 and 2 years old.. we noticed some things she did that were a little different and a little awkward. She would blink excessively, she would throw her head back a lot and also tuck her chin to her chest. But gosh – she was the CUTEST little honey butter biscuit and we were just OBSESSED with her and we really didn’t think much of it at the time. We brought it up once to her doctor and she said sometimes babies just do this stuff and she may or may not grow out of it.

So years go and Ellie just has little weird mannerisms but they’re not really bothering her, or us, so it’s just not a big deal. We really don’t see anything dramatically happening for a long time.

Fast forward to fall 2019.. Ellie is 5 and in Kindergarten and I do notice an increase in her… quirks. Her excessive throat clearing, sniffing.. other noises. Some mannerisms too, like tucking her ears toward her shoulders. Just little things that to us, made Ellie ELLIE 🙂

In Spring 2020.. I was like gosh she really is picking up the frequency of these little things she does. Closer together, more often.. I just saw this increase but again.. we’ve just ALWAYS known Ellie to be different and sweet and unique.

Earlier this year (2021).. things really started changing. Ellie seemed to now because making more noises, faces, movements and another element was introduced.. they really seemed to be out of her control and especially involuntary.

In April, I looked at Mike one day and I said.. “I know that Ellie has Tourette Syndrome. We’ll get a diagnosis to confirm, but I just know it”.

By this point – we’re talking tons of sounds, eye rolling and scrunched faces, knocking knees and ankles together, a LOT going on. But we had no idea how far she still had to go before things really got intense.

THE DAY OF our virtual neurology appointment, of course she was diagnosed that day but then something else happened later that afternoon:

The shouting random words started. (Opera! Gorilla! Joe Biden!)
THEN… the cussing started. (F*** you! Tits!)
The hitting started. This one was VERY hard to absorb the first day it happened. It was surreal to have this just start up one day and have 0 experience as a special needs mom of a kid that hits and have to figure out how to navigate it.

SO HERE WE ARE. Full blown Tourette Syndrome for our middle girl. I can’t even believe this is real life some days BUT it is becoming our “normal” so we are getting used to it and learning how to walk through this together.. as a TEAM.

We have a video via YouTube (must be 18 or older because of the swear words) where you can watch what life is like for Ellie now. Ellie’s PASSION is advocating for herself and others with Tourette Syndrome! She LOVES when she can immediately let people know she has it so that when the tics start.. those people already have an understanding about what’s going on instead of being started by it.

 

We share a TON on Instagram about Tourette Syndrome and have made incredible friends and connections there from both the TS community AND just random people who are here to cheer Ellie and our family on! Head to Instagram for more info on TS and lots of updates!

Want to learn even more about Tourette Syndrome? Head to THIS link!

Thank you for all of the support – this is TRULY hard, for all of us (especially Ellie) but we are making the most out of every single day.

One Comment Add yours

  1. Sachel says:

    Amanda, you and Mike already know how much I love your family! I’ve always adored you two and your girls and this makes me love you all even more. Thank you SOOOOOOOOO much for sharing your story and shedding light on a community that, at times, may feel unseen. You two are the perfect parents for these three mermaids and when it gets tough, I hope you’re reminded that every storm cloud eventually runs out of rain. 💙 I love you all!!!!!

Leave a Reply