Parenting Kids with Disabilities: Surgery

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12 minute read

Previously on Summer Blog Series 2017: Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) / What Ableism Looks Like / Identity / Inclusion vs. Accommodation / Community / Advocacy / Autonomy and Consent / Conclusion

Dear Parents,

When your child has surgery, you will likely be advised of many things: most of them medical.  You will probably know more than you want to about the procedure your child is experiencing.  You will know when to get to the hospital.  You will know they aren’t to eat or drink anything the night before undergoing anesthetic.  But you may not know what a child who has been through surgery finds helpful.

I had many surgeries as a child.  Around eight total, by the time I was eleven years old.  The surgery I had at age three was the first I actually remember.  I remember undergoing anesthesia for the first time.  I remember how petrified I was not to be with my sister or my mom.  I remember how frightening the surgical staff looked in their masks and hats.  I remember being uncomfortable in pajamas that were not mine.  I remember crying as the anesthesiologist urged me to “say hi to Ernie and Bert.”

I was three, but I was smart.  I knew Ernie and Bert did not live inside that mask.  (And place blindness prevented me from locating where they might be in the room at large.)  It was terrifying and felt like everything wrong I had ever been told: Don’t go anywhere without Mom.  Don’t talk to strangers.  If a stranger tells you to do something you don’t want to do, go and tell an adult you trust.  If they try to give you something and tell you it’s candy, or something fun, know it could be a trick.  Don’t take the candy.  Don’t breathe into the mask.

But what if you can’t do that?  What if you’re three and all the scariest things are happening and Mom isn’t there?  What if you can’t stop crying, so you can’t help doing the one thing you know you shouldn’t?  What if you are totally alone?

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So, what can you do if your child is having surgery?

1) EXPLAIN:

Don’t assume your child is too young or that their disability precludes them from understanding that things will not be usual when having surgery.  Use age appropriate explanations.  If they are very young, play pretend with a favorite toy, and use it as a surrogate to show them what will be happening.

This does not mean to tell your child everything that will happen to him or her.  A little bit of mystery is okay.  My parents were great about keeping my sis and I informed, but also protected from the extent of what we would go through.

2)  ANSWER QUESTIONS AND EASE FEARS:

If your child asks if it will hurt, be honest with them.  Don’t ignore their questions and don’t tell them it won’t hurt.  It will, but also reassure them that there will be in a place with lots of people whose job it is to help them feel better.

Reassure them that you (or someone who loves them) will always be there for them.

If possible, familiarize them with the hospital or items they might see there, so they will be less scared of the unknowns.

3)  ALLOW YOUR CHILD TO BRING A COMFORT OBJECT TO THE HOSPITAL AND INTO THE OPERATING ROOM, IF POSSIBLE:

No matter how old the child, surgery is traumatic, and as I detailed in the opening, we go into that operating room totally alone.  Allowing your child to bring a stuffed animal or a favorite blanket with them into surgery will help them feel less vulnerable, and will give them a little bit of comfort.

Make this a big deal.  Ask them prior to leaving which stuffed animal they would like to bring.  Make it as positive as you can.  Which stuffed animal gets to travel with them?  Which one does the best job of making them feel better?

I always experienced the nothing but the best from the operating room staff regarding my surgery buddy.  They were labeled so they would not be separated from me.  Leaving the hospital after a weeklong stay, post-surgery, family lore has it that one of my newly acquired stuffed animals was lost.  But hospital staff found it in the laundry and sent it back to us.

4)  FIND WAYS FOR YOUR CHILD TO BE IN CONTROL:

No parent likes to feel that their child rules the roost, but in times where a surgery is looming, finding ways for your child to be in control of what’s around them helps immensely.  There aren’t really words for the intense invasion surgery is on a child’s body.  We have not given consent, because children are too young to do such a thing and it is up to the parents to make the call about what is procedures are necessary to ensure that a child has the best quality of life possible.  As an adult, I understand that, but as a child, around surgery time, all I felt was intense pain I was not in control of.

Allow your child to choose a lot leading up to and during the surgery and recovery process.  (The closed choice is awesome, this means, letting them choose between two options you have already decided are okay.)

Some areas your child might love to have control over:

Meals, the day before their surgery.  Especially if money is an issue and you cannot do a big excursion, ask them what they want to eat for breakfast, lunch and dinner the day before surgery.

Fun activities the day before surgery:  This can be a family bike ride, a movie, or a game you all play together, or some time at the park.

Which stuffed animal, blanket or cuddly item to bring:  You’re not going to trust your four year old, eight year old, or ten year old to pack their own suitcase for the hospital, but give them a separate, smaller bag (maybe their backpack) to bring their comfort object and other items they might want to pass the time with (coloring books, notebooks, I-Pad, etc.)

Whenever possible, listen to them and honor their wishes regarding who is in their physical space and who touches their body: All children are (hopefully) taught at some point that their bodies belong to them.  If your child has surgeries, especially if they are frequent, they may feel like they are not in control of who touches them, or whether or not they are being hurt.  This can cause problems down the road if not addressed, and treated carefully.  If the nurse must examine their legs (for example) let the child choose which leg first.  Let your child count out loud before being turned in bed.  Let them choose who they would like to hold their hand while they have something scary done.

Who knows about their upcoming surgery and how much they know:  Especially if your child is older, they might want to keep their surgery relatively private.  Surgery is intense and traumatic.  It isn't dinner-table conversation, and it isn't family gossip.  Leave just how much is said to your friends and people outside of your immediate family up to your child.  If your child is younger, take their cues.  If they look uncomfortable at a public discussion of their surgery, respect that, and steer the conversation in another, safer direction.

5) RESPECT YOUR CHILD'S BOUNDARIES:

Whether your child is five years old, or 22, they deserve to have their boundaries respected.  That means when they are recovering and in pain, don't take photos of them and post them online.  If you would be mortified at someone doing the same to you while you were in a vulnerable position, don't do it to your children with disabilities.  They have a right to privacy, especially when they are going through hard things.  (If you absolutely must document your child's recovery, for some reason, photograph their stuffed animal.)  When they are feeling a bit better, and like smiling for pictures, then you can ask if they'd mind if you shared one of the smiley pictures.

[Image is: Tara (left) and me (right).  I am in a hospital issue wheelchair, both legs in casts.  I'm smiling, and Tara's making a silly face.  It's our fourth birthday.]

6)  CELEBRATE EVERYTHING:

Surgeries are trying not just for the child but for the entire family.  It can be hard to remember to breathe and celebrate the little victories along with the big ones in your child’s recovery.  Once your child is able to tolerate celebration, make a point to do this often.

Is your child being released from the hospital today?  Why not have a 30-second gentle dance party in the car to your kid’s favorite music?  Did your child master something in therapy they couldn’t do yesterday, even if it’s small?  Tell them you are so proud of them.  Can they sit up on their own?  Stand?  Bend their leg a little more today?  Bear more weight for longer?  Are they on one less medication for pain?  That’s huge.  Celebrate it.

Surgery is always tough, but it’s my hope that with these tips, it will be a little bit easier on your child, and on you, as the parent.

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