Navigating the Perfect “Autism” Storm

Most people with Autism need a high level of structure and clear-cut routines.  

Familiar people, familiar places, they know what’s coming, no surprises, etc.

This makes them feel comfortable and secure, and in Autism research, there is overwhelming proof that people with Autism thrive more in every way when you place them in a very stable environment.

So sure – this is great in theory, but highly unrealistic.  

Life doesn’t work this way.

So, what do you do when you have a child with Autism who is about to go through a situation that is completely new, and potentially painful, in a strange place with strange people?

Namely, a dental surgery?

AND, couple this with the fact that Gabriel was just five years old, and had a serious receptive and expressive speech delay that allowed him to communicate like a two-year-old.

Meaning, yes, we could try and tell him what was about to happen and the reasons for it, but we wouldn’t have any guarantees that he would understand anything we were saying.  

There was no such ability to have the following conversation:

Mom: “Gabriel, you have some teeth that need to be fixed, so we’re going to take you to the hospital and they’ll put you under, they’ll fix your teeth, and then you’ll wake up and be a little groggy but you’ll be fine.”

Gabriel: “OK Mom, got it.  I’ll be fine.  Thanks.

In my dreams.

We had the makings of a perfect storm ahead of us, with the potential of a truly traumatic experience for our little boy.

While it was an outpatient procedure and he wouldn’t have to spend the night in the hospital, he was still going to have to go through a million, different tiny procedures (each of which would be difficult for him to do, and any number of these could potentially cause a meltdown):

  • Smelling the air in the hospital
    • He and many with Autism are super sensitive to any different smells
  • Waiting, and waiting, and waiting….
    • Tough for any kid but this was certain to just heighten the anxiety
    • (I had the iPad fully charged and ready to go…)
  • Putting on a surgical gown
    • He might not like the texture or feel of the gown against his skin
  • Having blood pressure taken
    • I’m sure he’ll be thinking, “Why is this thing squeezing my arm and WHY is Mom allowing it?!”
  • Mask on his face to put him under with anesthesia
    • Again, scary for any kid, but a mask on his face?  He’ll probably freak out and try to rip it off.
      • This is the same kid who screams bloody murder if someone tries to cut his hair..
  • Waking up in a strange place with strange people, in PAIN
    • In the past he’s refused to take medicine..  How will we get him to take his pain killers?

How could I prepare him for ALL of these new experiences in a nonverbal way?!?!  

How could I cushion each little blow so that he wouldn’t be completely terrified and traumatized the entire time…??

(insert deep breath here…)

Well, looking back, I truly think that God intervened, because it was right at this time that I was taking an Assistive Technology course through my Special Education MSEd program, and one thing we were studying was “Social Stories.”  

Telling stories through pictures.

Not a novel idea, to be sure, but this kind of story is highly individualized and is designed to provide the child with a very specific, play-by-play of what is going to happen.  And when you’re dealing with kids with speech delays, incorporating visuals is one of the most valuable things you can do.  

Not only do you tell them what is going to happen, they can “see” it.  It made perfect sense.  

I took the idea and  created a very simple “social story” for him, to show him a step-by-step playbook of what was about to happen, and ALSO, to show him what he had to look forward to after the surgery was over….

A PRESENT!

So Daniel and I sat down with Gabriel the day before the surgery, showed him this story (below), and very slowly – and very simply – talked our way through it, picture by picture.

Gabriel, tonight you’re going to go sleep, then wake up tomorrow, you’ll have a bath, and then we’ll go to place called a hospital.  You’ll put on a hospital gown, and lie down in a bed.  Mommy will be there and I’ll put a mask on my face, and Gabriel, you will put a mask on your face.  Then you’re going to hold Mommy’s hand, look in Mommy’s eyes, you’ll start to feel sleepy, and you will go to sleep. Then the dentist will fix your teeth.  Then you’ll wake up, and Mommy will have a present waiting for you!  Then we’ll take you home and you can sleep.

screen-shot-2016-12-02-at-12-14-58-pm

Now.  I don’t want to brag (but I admit I AM about to brag a little… 🙂

It worked.  And it worked SO well…!

Truthfully, when he saw “present,” that was it.  After that moment, he talked about nothing else.

“Present?!  Present?!  Present!!!”

Not about the anxiety of going to the hospital, or a mask on his face, or having his teeth fixed, etc.

***********************************************************************

So, the next morning came, and we were ready for the worst, but he gave us his best.

ZERO meltdowns.

He was happy, calm, and compliant throughout the entire day.

A pure dream.

screen-shot-2016-12-02-at-1-03-18-pm

I brought the story with us, and showed it to him multiple times throughout the morning – just to keep it fresh in his mind – but I think I ended up being more nervous than he ever was.  

I was the one who was nervous when they asked him to put on the gown, but it went off without a hitch.  And I was the one who started crying when he was looking in my eyes and falling asleep under anesthesia.  

He was just peaceful and brave.  Pure grace.

And he woke up with the same grace with which he fell asleep.  Groggy, to be sure, but not angry, cranky or even irritable.

So yes, the present was the cherry on the top, but I still deeply believe that it helped him knowing and seeing what was going to happen, so there were no surprises.

And, he LOVED his present!  (a Wii game he’d been wanting).  

Very well-deserved, my love.

Since then, we’ve used similar-style social stories for many things, such as before we jet off for a summer vacation, but I’ve never had a social story work as well as it did for Gabriel and his dental surgery.

Highly recommended strategy for navigating the potential, perfect “Autism” storm. 🙂

screen-shot-2016-12-02-at-1-01-23-pm

3 thoughts on “Navigating the Perfect “Autism” Storm

  • Hi! As a mother lf three childrrn with Autism myself i Love your blog. I have often thohght to start a blog myself but I am just not a writer, not mention I dont have the time…our three children are 35 months apart…and all have autism. 6, 5, and just turned four. It is a mad house bit also a blessing for our family! Dental issues is a big one at our house and we need to have dental surgery soon so I will definitely try your strategy here. Ours are all nonverbal so it is a bit sifficult to dxplain social stories but i am willing to try anything! I feel a connection with your family with our family having three children with autism and you guys lived in Korea… and I am from korea. I have lived all over the world as I grew up as an MK( missionary kid) and would love to teach overseas..,the idea of taking our three children with special needs has always been scary for my husband and I….your posts are so encouraging! After all, raisinf three with autism is…well a perfect storm in itself. I rely on God wvery moment of every day. Taking a short break in between chores, reading your post brought me joy! God bless your family!

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    • Hi Esther, very nice to meet you. God bless you as well for your love and courage that you have for your children. How right you are that raising children with autism is “the perfect storm in itself.” I’m glad you like the post and I would highly encourage you to try social stories; I would think that the fact that your children are nonverbal is even more of a reason to incorporate as many visuals. They may not understand everything, but even if they understand 10% of it, it’s certainly still beneficial. There are also some good social story apps that will help you create them, versus creating this one from scratch like I did (which took a lot of work). Here’s one that I have on my iPhone: https://itunes.apple.com/app/id588180598?mt=8. Take care and please keep in touch. xo

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