surgery when your child has autism or sensory processing

Surgery when your child has autism- 5 tips from a mom

The prospect of your child going into surgery is daunting for all of us, but what if your child struggles to integrate stimuli from the surrounding world? What if the simple and act of a new nurse coming in and putting a new notification bracelet on your child’s wrist without warning is enough to send your child under the table for half an hour?

What if your child going in for surgery also has autism?

Mac is a sweet, creative and observant 9-year-old. He is in a regular third grade class, where he participates, plays and learns right alongside his classmates, but in preschool it became clear that Mac had some sensory processing issues. In Kindergarten he was officially diagnosed as being on the autism spectrum. Autism is often a hidden disability; there is no wheelchair or cane that indicates disability, but the reality is that autism can provide significant challenges to everyday tasks most of us take for granted. In this post Kathy shares her pointers for advocating for and parenting her son through surgery:

1. Be an active participant in your child’s health care team

Kathy suggests parents have to manage the situation, anticipate where there maybe difficulties and plan in advance. Mac isn’t particularly expressive so it is difficult to assess what his anxiety level is until he retreats. Kathy’s insights as a parent into Mac’s emotional state are invaluable.

2. Assess when to tell your child based upon their developmental age and their personality

Three to four days prior to the surgery Kathy explained what was going to happen to then eight-year-old Mac. For Mac, much more time would have given him time to obsess and to worry about the upcoming surgery.

3. Know the layout- the physical layout and the staff

Kathy and Mac took a tour of the Tucson Medical Center surgery area prior to the day, explaining each step along the way. (Tours can be scheduled for any child. More information here. ) It was also an opportunity to meet with some of the staff and provide some insights into Mac’s responses, ex. encouraging them to explain EVERYTHING exactly before proceeding reduced anxiety for Mac. Tucson Medical Center child life specialists will work with all children to familiarize them with procedures.

4. Ask questions, know the plan, work with the staff to ensure that your child feels as safe and secure as possible

Kathy created a visual schedule of events, copied it and shared it. Mac knew what would happen at every point and had a reference to check. Managing the situation with your child’s specific needs in  mind provides the best outcome for your child’s recovery and for the time management of staff. Kathy stayed with her son until the last minute before he went into surgery. Beforehand Mac had connected with the anesthesiologist over their joint love of airplanes; that connection allowed for an easy transition as he moved into the operating room. Kathy was able to be present in the recovery room before Mac woke up.

5. Maintain their schedule and environment as much as possible

Kathy brought familiar items from home for Mac, including a weighted blanket that helps calm Mac. As best as possible Kathy tried to recreate his environment and schedule.

Kathy describes the experience as a balance between advocating for your child and trusting the medical staff once informed of your child’s specific needs to do what’s best – figuring out what to push for and when to back off.

A balance between advocating for your child and trusting the medical staff once informed of your child’s specific needs to do what’s best – Kathy