Ebenezer Scrooge has nothing on an Autism Christmas

A look at our Christmas present, present and future…

CHRISTMAS PRESENT

As I sat alone with my oldest, panting from our recent wrestling match, keeping him from darting off for the third time, I realized I was an outsider at our own family celebration.

I watched as if I was outside a storefront window. This beautiful unattainable family holiday gathering performed in front of my eyes.

How badly do I want to fit in. How do I wish that just once my boys could have a happy Christmas gathering.

I feel deep heartache as I continue to watch this scene, holding Quentin, trying to ease his anxiety, telling him he will be okay.

I wish someone could tell me that I too will be okay.

I am sad today. Deeply saddened.

The truth is we’re not the family I’m seeing from the outside the window.

We are not even together.

My youngest son is miles away from us and I miss him. It hurts that he’s not with us today and it hurts that not one person is talking about him.

We might all be thinking of him today, wondering how he is, where he is, or what he’s doing.  Perhaps no one wants to talk about it.  Or maybe no one but me is thinking about him.

Maybe the others have forgot, or they are just into today, the holiday. Or their lives are just unchanged by it.

My heart hurts that Quentin can’t enjoy today because the stress of his environment, the anxiety, and the overwhelming pressures of not knowing what to expect.

Honestly, I’m not even sure why he’s having such a hard time.

All I know is that he is most definitely stressed with everything about this day, this place, this celebration, and it is extremely painful for him.  And all of this makes me sad.

I grieve the life I thought we would have and Christmases I thought we would celebrate.

My boys don’t even know there is a Santa, let alone that he leaves gifts.  I used to pretend they did.

I used to hide the dumb little elf, just for me to find every morning.

I used to put together the Santa gifts and leave out the packages to be opened Christmas morning, just for the boys to ignore, packages untouched.

I finally stopped doing that.

It hurt too much. The pain was just too real.

Sometimes you just can’t fake it anymore and you must face the inevitable of what it really is.

My boys do not understand Christmas, Santa, the Elf on the Shelf, or presents.

Leaving our home is hard sometimes and trying to go to church for Christmas Eve service is like trying to keep the boys out of the swimming pool during pool check.

No matter how hard you try, want to pretend, play the role, reality is reality and you just have to face it.

CHRISTMAS PAST

I reminisce of Christmas past and there seems to be painful memories attached once autism entered our lives.

I fear this year may be one of the hardest for our family yet.

I will never forget the first Christmas after our son Quentin was diagnosed. It had only been three weeks.

We gathered with a large group of extended family in a community center. Quentin was actually okay, just flapping and self-stimming, and vocally very loud.

He was very happy and excitable and the only way he could express himself was to squeal at a very high decibel.

At one point he was looking at the Christmas tree jumping, laughing, flapping, and squealing, happy in his own little world.

While he was enjoying his moment, I happened to glance over to see a few of the older kids laughing and pointing at him.  I was crushed. My spirit shattered.

My worst fear was happening.

Quentin was getting teased and he didn’t even know it.

I knew that they were just kids but that didn’t make it hurt any less. It was then that I realized our lives were different.

Our Christmases would not look like others.

Our family would not look like “typical” families, and my son wouldn’t play with other kids at holiday gatherings.

He would be in his own world and we would be looking from the outside in.  That year was one of the hardest holidays I can remember.

We’ve had many Christmases since that first one. Our second child was diagnosed with of autism, which had brought new challenges each year.

A Christmas Hummel figurine being thrown off grandma’s banister, shattering into the ham, potatoes, and jello salad.  Or the time when one of them got into the red jello salad and smeared it all over grandma’s house when no one was looking.

Meltdowns, broken Christmas Villages, routines being off, and the list goes on.

As hard as it is for the boys they are equally as stressful for me.

I feel that I am always on guard, following them around like the helicopter mom I used to laugh at before having kids.

These Christmases have been so stressful that last year I said we are done!

We are making Christmas Memories only!  Fun times, no exceptions, no stress, no stressful dinners, worrying about church services, and whether or not they will open presents.

Nope, this year we are going to Florida and taking them to Walt Disney World!

Quentin will meet his ultimate hero Mickey Mouse. Urijah will enjoy the rides, the music and Kaylee can finally go to Bell’s Castle.

Well…Our flight was delayed for hours, I spent most of the time on the floor with Quentin (thank you to my sweet husband for capturing these memories for me), and our credit card had $57.81 worth of charges from the vending machines.

We went through ALL of our emergency clothes and were down to our special, only tradition we have, Christmas Comfy Jammies and finally boarded the plane, landing in Florida around midnight.

The most magical place on earth did not disappoint, except for some flu setbacks for Kaylee and I.  I mean who doesn’t want the memory of throwing up in the brushes of Africa at Animal Kingdom?

Quentin had the most memorable moment of all, meeting the Mickey Mouse crew.

When Mickey himself came Quentin was so starstruck that at first he took off running. That moment right there, was what it was all about.

In that moment I was reminded why I wanted to be a mom. In that moment autism didn’t exist.

This was my son, perfect in every way having his special moment with his main mouse! His everyday hero, who we hear everyday in our home, in every language on youtube; “oh toodles”, holding his hand sharing their moment, seeing him for him.  It was magical!

I don’t think any of us will ever forget that night at Chef Mickey’s.

The rest of the trip had its moments, but meeting Mickey was the best Christmas memory of 2017.

CHRISTMAS FUTURE

Unknown is always hard.  I think we get stuck on the idea that the future means growth and that with time things will get better.

We hope that everyday. I hope that…you have too. But we don’t know.

I need to let go of the false idea of what I thought the future was going to look like.

I think we need to prepare for the future but stop being so hard on ourselves when it doesn’t look like the way we had predicted or planned.

I feel guilty when I’m upset about autism or the situations we are experiencing because of it.  I feel like strong moms aren’t supposed to hurt.

We are are to remain strong, not let our feeling be exposed, and certainly to not let those tears out.

I feel guilty when I admit that things make me sad, not jealous, but sad.  There’s a difference. I want great things for people, I truly do but I equally want those things for my family too and for those friends of mine who travel along this with me.

I saw a Christmas card the other day.  The family on it was so perfect it almost looked like the sample card you use to design your own card.

I can’t help but wonder why do some families get that life and other families get autism. I struggle with this sometimes.

I know other families have problems too.  But I got autism times two and I have one that can’t even be at home right now and we’re only going be able to spend four hours with him.

I can’t even buy him a present because everything that goes on the unit has to be cleared by nursing and the few little selected things that he likes, can’t clear the unit because of hazards to others.  It hurts sometimes just like Christmas can really hurt.

I’m realizing our Christmases won’t get better.

They might look different from year to year but they don’t look like that Christmas cards I saw.  They’re messy, they’re upside down, they don’t look at the camera.

They’re out of frame and out of focus and sometimes we’re on the outside looking in wondering how to get inside.

How to get inside and fit into our own families.  How to make our Christmases somewhat normal. I struggle with how to do that. I especially don’t know how to do this year.

This year I believe will be the hardest yet for our family.

We leave for Baltimore on Christmas Eve and will spend the week there with Urijah.

Quentin’s expected airport journey with his most recent elopement issues or being in a large city with him has my mommy anxiety at a whole new level.

Trying to make sure our daughter has the Christmas she deserves, yet keep our credit card within the normal limits is a whole different issue. And trying to figure out how or where our family will spend the four precious hours we have together does not look like the Christmas article out of Martha Stewart.

How will Quentin and Urijah react when they see each other for the first time in four months?

How will Urijah feel seeing his big sister for the first time since she went away to college?

This could be a beautiful celebration or I could feel worse than Kevin McCallister’s mom, just hopefully I’m not searching for anyone in the city.

I’m fearful, sad, excited, joyful, and filled with hope.

What I do know is I will enjoy those four hours we have together as a family OUR family. I will not be looking in from the outside trying desperately to get in, for the five us of with be together.

All we need is to be together, no matter how out of focus or out frame we might be, we will be together. We will make our own memories, our own different Hallmark movies, or stock photos Christmas cards.

I’ve come to realize that holidays are just that, holidays, a word. Something that stresses us, overwhelms us, and makes us feel inadequate to our peers or even worse our own families.

Once the tree comes down, the gifts are unwrapped, the fancy dresses are put away and dishes are clean, what’s left?  Memories? Bags of crumpled wrapping paper?  Leftovers? Xanax and antacids? The need for sleep and stress relief.

Why do we put so much pressure on ourselves to be a certain way or preform. Be perfect for our family?

When in reality the only thing that matters is the true meaning, whatever that is to you.

To me, the true the meaning of Christmas is having my family, a party of five, together for whatever time I get.

I will enjoy every moment, the good, the bad, the out of focus, and everything in-between.

Merry Christmas and may your New Year be filled with bright hope for the future!

Written by, Christina Maulsby

From the author: My name is Christina Maulsby. After the past year of two failed inpatients and one intensive outpatient my son is in an Institute intensive inpatient unit in Baltimore. He was having approximately 400 self injurious behaviors a day and 25-30 aggressions towards others daily. He has been in Baltimore since September. He lives in Iowa. It’s been an overwhelming experience, filled with both gratitude and deep sadness. Writing is the only way I have found to cope with all the feelings I am experiencing.

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