Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……

THE END

For those who have not read this 2008 twist on the Christmas classic, I urge you to read it. Read it as if you were in the author’s shoes. We all know that the holidays are a very stressful and anxious time for everyone, but what about the parents with kids on the spectrum? Has anyone checked in on them? What do you get a non-verbal, autistic and severely intellectually disabled child? The thoughts of whether or not an item of clothing is a texture that your child can tolerate, or if a toy with flashing lights is going to trigger a seizure? Most parents of kids without these special needs can just pick out age appropriate toys for their child, following the age suggestions on the box of the item(s). In the world of Autism, parents have to think differently about buying gifts for their child and how well they function, rather than picking toys that fit within the age frame on the box. Most toys for kids 7+ are COMPLETELY inappropriate and possibly harmful for Greyson, so many of the gifts on his “wish list”, were items that were also on my six month-old nephew’s “wish list”. Talk about reality smacking ya in the face!

The past couple of weeks have been exceptionally difficult at our house. It seems like Roslynn got sick around Halloween and since then, we are all spreading it to each other and to Greyson’s staff members. ‘Tis the season for flu, RSV, Covid and the GI bugs that seem to always creep in when you least expect it. Unfortunately, Greyson has been hit twice over the past two months with a severe URI (Upper Respiratory Infection) and most recently, an ear infection which ruptured his ear drum. Two days after being cleared that his ear was healing well, he decided that he was overdue for an injury.

Saturday December 9th, we had my niece’s birthday party to attend, which we were very excited that Greyson was going to attend the party (usually he stays home, but has been doing really well at public functions). The entire family was up by 6 am, so around 8, I was able to sneak upstairs in hopes that Derek could distract Greyson long enough where I could take a shower alone. WRONG Greyson realized I was gone about half-way through my shower and proceeded to have a giant tantrum. I should preface this by stating that he had begun having seizure episodes on December 7th and was about 48 hours into these episodes when this happened, so he was easily triggered by any change that happened around him. After he realized I was in the shower, Greyson began to hit, kick and throw himself against the bathroom door, attempting to enter. I quickly finished my shower and talked through the bathroom door to him that I was going to be out right away and that he needed to calm himself, etc. (things that usually help when he’s upset). By the time I was dried off, I didn’t hear him screaming as badly as he did a few moments prior, so I thought that he was calming down and was realizing I had finished my shower. I opened the door to the bedroom and immediately saw blood. Lots and lots of blood. I’m not a queezy person, so luckily I was able to stomach all of this, but when I saw Greyson, I knew we were in trouble.

It’s still unclear how this exactly happened, but during his tantrum, Greyson managed to cut his fourth toe on the right foot. Like nearly sliced it right in half. With the amount of blood, I knew we were going to the ER immediately, so Derek called 911. Not sure if it was shock, pain or both, but Greyson began to have severe epileptic episodes when trying to calm him down. I tied a towel onto his foot to stop the bleeding and tried the best I could to get him to sit down and accept help. Fast forward about 7 minutes and the EMS arrived. Derek and Greyson were transported to a local Emergency Room and Roslynn and I followed a bit later by car. Greyson was almost finished being stitched up by the time we arrived, but he needed x-rays to make sure nothing was broken internally. I sat down and Greyson climbed into my lap, exhausted from screaming and crying during the stitches being placed, so he was pretty lax when it came to the x-ray. Luckily, there were no fractures or broken bones and he was discharged to come home. I always joke and say it’s really a circus at our house and some catastrophe is always happening when we least expect it, but with his track record, Greyson is set for his next round of stitches by the summer.

Both kids have been keeping us on our toes and are very excited for Christmas. I think Greyson may be a little interested in opening gifts this year, so that will be fun to watch if he tries to tear the paper. Her Christmas list was full of many technology-friendly toys and some art supplies. She is really into drawing and painting right now, but still insists that she wants to be a singer someday. Time will tell, I guess.

I was happy to share a few weeks ago that I am assisting with writing a children’s book series about Autism! I have met with the production team and the Emmy-award winning author who will write the first book of the series, and have received tons of great feedback and ideas. I am so excited to begin 2024 off with the possibility of introducing our family to thousands of people, while teaching a bit about our lives and how Autism plays into our everyday life. Each book in the series will be from the prospective of each family member, including Mr. Duke! The five-book series will begin with Roslynn’s point-of-view, then end with Greyson’s. Below are some preliminary sketches/coloring for the characters in the book. As you can tell, Derek and my representation is extremely accurate, and once the hair color is modified a bit, Roslynn and Greyson will also be perfect. We are really fortunate to be a part of this series and I look forward to speaking out about Autism and how we specifically are impacted by the broad spectrum of the disorder.

So as Christmas Eve is here upon us, the kiddos are in bed. The Grinch and The Year Without a Santa Claus have been watched, cookies have been left out for Santa, Carrots and Reindeer food have been placed outside for Rudolph, and an alarm has been set for 6 am, which is the earliest time Roslynn is allowed to wake us all up. 2024 is quickly approaching and I have a feeling it’s going to be a really good year. Merry Christmas to all, and to all, a goodnight.

Late November/December Photo Dump: