Surgery Preparation and Tips
My daughter, at 16 years old, was recommended for spinal fusion surgery. She had a serious curve in her spine and had 13 vertebrae fused in March of 2016. Iris, a severely autistic, non-verbal, self abusive child, made it clear that she wanted the surgery – which mercifully obsolved me of “is this the right thing to do?” worries but left me faced with getting this child through pre-op appointments and procedures, the operation and required hospital stay and at home recovery largely on my own. Though the doctor and hospital staff were wonderful, communicating what was expected of her and helping her through this difficult and scary process was a daunting task.

Mercifully, I do social stories and she responds very well to them. When she sees our logo, she pays attention to the important information coming. I found myself needing to sneak off and write stories mid process because I didn’t anticipate a lot of the issues that arose. She was genuinely afraid to get in the bath tub after surgery – and our frantic attempts to explain what was going to happen only made her more nervous. A quick social story helped thing go more smoothly.

So naturally, I want to share my results with you, to help make your journey into surgery for any child easier for all, but most especially for special needs families who have extra communication challenges like us. I did these for spine surgery, of course, and then modified them for more general surgery. Below is an accounting of our journey.

Before Surgery
Most hospitals have social workers who can help prepare children for surgery. They gave us a tour of the place and gave us a gown and medical equipment to take home a few weeks before the surgery. Stethescope, IV tubes (with no needle, of course) and tape, an anesthesia mask, face masks, gloves – so much. If you don’t get offered this service, request it, because it really made a difference.

The first thing, of course, is X-rays. It’s so important for them to stay still and to understand what those big machines are. “Let’s Get an X-ray” can help prepare kids for what to expect. Great that it is painless, right? This story also helps develop a buzz word (FREEZE!) for immediate action (or inaction). Most hospitals will let you stay (if you wear a heavy apron) and help your child. They will ask the patient to change into a hosptal gown if they have clothes with metal on them. For us, changing clothes was a big, focus changing problem so we made sure to wear yoga pants or sweats with no grommets for the string tie or metal accents and only soft fabric bras (no hooks). I want to say, too, that if you can get your child to read the story to you, so much the better – this way you know the words went through their brain.

One of our concerns was that Iris would not want to wear the back brace she would need after surgery. We felt it was better to start this process before the surgery, so it would be familiar when she was groggy afterwards.

She was reluctant to wear the brace. We got it about a week before the operation and she tried it on, but then wanted it off very quickly. She took it to school, same story. On the second night I wore the brace around all night. I laid in bed with her wearing it. I cooked dinner with it on. I watched TV in it. I took her for a ride with it on and a jacket over it. Several times she acted like she wanted me to take it off and I just said “no thanks – back brace stays on for the whole day” and had her reading the social story “Let’s Make Friends with our Back Brace.” I even started calling the thing “our good friend Back Brace.” Day 2 at school was way better – she wore the brace for most of the day and by surgery day, she was looking for it before we left the house. Once she has gotten with the program I stop the social story, of course, but I have it in case she needs a reminder down the line.

When we picked up the brace, we were given instructions for the morning of the surgery. They wanted us an hour from home at 7:30am, so there was no time to mess around that morning and our next social story came into play “Let’s Talk About Back Surgery” which really helped a lot – we read it for about 5 days before the surgery.

My greatest fear was that Iris would not tolerate the IVs – I could just see her waking up and ripping the stuff off of her. After my success with modelling the back brace, I used the materials the hospital provided and taped an IV onto my arm the evening before surgery. I showed it to her and let her touch it. I pulled on the hospital mesh “sleeve” and wore it all night, even to bed. When I woke up I made sure to show her and again let her touch it as we got ready to go.

I kept that thing on the whole time she was in the hospital. Any time she went to touch her own IV, I said, “Nope – I am still wearing mine. You can touch mine.” and she would leave it alone. Once the nurses removed hers, I let them take mine off, too. At one point it fell off and I made a big show of how only the nurse could touch it and she taped it back on for me. All the nurses thought it was a great idea and were happy to play along. If I had it to do again, I would have put the plastic closer to my wrist – it was chaffing in the joint.

After Surgery
So I could see far enough to know I needed a story for the week long hospital stay and “Let’s Recover from Back Surgery” was written with information from the doctor and nurses about what to expect in the hospital. I showed her this one just the last 2 days before surgery in conjunction with the other surgery prep story and again after surgery, particularly if she got aggitated to remind her what we agreed to and that it was only for a couple of days. She really liked the soothing spa music channel on the hospital TV after surgery – that was all she wanted to watch and she still likes the similar channel we get on Comcast, so she is watching less tv shows and more using the tv for music. My little teenager 🙂

I was also concerned about her objecting to a catheter, so I did “Let’s Talk About Going to the Bathroom After Surgery” which I didn’t even show her until she was in the hospital and awake enough to wonder. I just wanted it on hand to explain, just in case, really. Keeping her hands above the sheets helped her to not notice.

What I wasn’t thinking about was getting her home (driving in the car) and in the house and what recovery time at home would look like. What are the rules now? How are we going to do these usually easy tasks? She wanted to go potty as soon as we got home – I was slightly freaking out, since we hadn’t gotten the medical commode for her yet. I tried to write “Let’s Finish Recovering from Surgery at Home” but didn’t finish it for our family. I wish I had thought of it earlier. We really could have used this.

What actually happened for us was I wrote “Let’s Talk About Using the Bathroom at Home After Surgery” addressing special equipment for all her bathroom needs. This helped her understand the shower chair and feel more comfortable with bathing. I was nervous about it. I had in-home support for the first few weeks to help and I am glad I did.

Interestingly, I must say that Iris’ self abuse is all but gone – children’s voices and pain are her only remaining triggers, that I can see. Perhaps it was pain that inspired the punching or maybe she understands more about pain, now. For the first few weeks after surgery she didn’t even flap when she was happy – I think she was a bit afraid to move. While happy flapping has come back to full strength, the hitting is hardly at all and virtually never in the face any more, thank goodness. She has also become more communicative – largely because she had to. Being stuck in bed and needing help to get up means you must communicate your needs. Our bond has also strengthened quite nicely. She is thrilled with her loving mom, her new super strong spine and now she just wants to go out – anywhere and everywhere! This was the hardest thing we ever did and the most wonderful thing, too. I hope your journey is make easier by these stories and that you are as thrilled with the results as we are. Best wishes xo!

Medical Prep Stories – Back Surgery $5 each

Let’s Make Friends with Back Brace Let’s Talk About Back Surgery Let’s Recover from Back Surgery Let’s Talk About Going to the Bathroom After Surgery Let’s Finish Recovering fromSurgery at Home Let’s Talk About Usingthe Bathroom atHome After Surgery Buy all 6 Back Surgery Stories for just $18 “Let’s Get an X-ray” sold separately in a different collection