Tuesday, July 14, 2015

Josie's Tonsillectomy - A Social Story

While there is still a series of National Down Syndrome Convention posts planned, we interrupt that topic to address an important event that Josie will face this week: a tonsillectomy and adenoidectomy.  While these surgeries are relatively common in children, especially in children with Down syndrome, it is still a tough experience for a child.  Josie's past feeding difficulties resulting from her g-tube use (click HERE and HERE to read more), make this particular operation even more complicated and intimidating.  A successful recovery is contingent upon her willingness to eat and drink. 
As I've done with major life events in the past, I drafted a brief social story to help Josie prepare for the upcoming surgery.
I used Microsoft Publisher and incorporated a mixture of photos of Josie as well as generic photos I found on Google images.


Prepare to be amazed by my graphic design skills.  I know I will receive job offers right and left after the world gets a taste of my Microsoft Publisher "photoshopping": BOOM!


Wait for it, wait for it...BOOM, AGAIN!

Since food refusals are common in all children post-tonsillectomy, we are preparing ourselves for even more opposition from Josie, as eating is not her favorite pastime and she has a well-documented history of noncompliant mealtime behavior.

Therefore, this social story places great emphasis on the food consumption.  Josie's ENT said that in order for her to be discharged from the hospital, she has to eat and drink and that one of the most common problems that results from this surgery is dehydration.  We certainly don't want to have to be readmitted for IV fluids.
The next page employs the very valuable "First (non preferred activity), then (incentive)" statement that we learned in our years of behavioral therapy.  Josie
is very familiar with this idea so I spelled it out simply, with basic pictures because people with Down syndrome are very visual.  
We plan to take this booklet to the hospital with us to reiterate this idea after surgery.
While we anticipate some challenges initially after the surgery, we know that this type of surgery has the potential to bring a lot of health improvement to Josie.  She will have a sleep study in August to determine if she is still obstructing and experiencing lower oxygen saturations during sleep.

Here at CCE, we are big believers in the power of blogosphere prayers and we welcome and appreciate your prayers on Thursday. 
For more updates on Josie's progress, check our Instagram account:


  1. These social stories are great. You did really good with this! I had to crack up at how happy and ready to take a pic of crying Josie you and hubby are in the post surgery pic. Ha! Praying surgery goes well.

  2. Sending you lots of LOVE and hugs as you go through this journey. Ben had his tonsils and adenoids out this past December. If I could pass on one bit of advice it would be to request suppository pain medication. Ben is NOT a fan of taking oral medications and it was so much easier to focus on him making attempts at eating without having to also fight him getting his meds in orally. Also we were able to medicate him in during the night without really waking him. Just a tip but thought I'd share it as I really attribute it to making a world of difference in Ben's recovery and his willingness to try to eat and drink. Sending lots of love!

  3. Was that post supposed to make me cry? Good luck with this adventure.

  4. Am already praying and I am sure there will be many angels surrounding Josie all during this to protect her and help her heal. Jesus adores the little ones and thank goodness He is such a wonderful healer. "And by His stripes we are healed." Isaiah 53:5

  5. I'll be praying for your sweet Josie!

  6. Good luck Josie and family! The social stories you wrote for Josie seem very useful tools. I bet she doesn't care of your photo editing skills ;)

  7. Thanks for your story. I modified it for my son, I am hoping it will help.

  8. Any chance youd be willing to email this social story so i could edit and use for my daughter?