The prospect of a 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 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?

In preschool it became clear that Kathy’s son Mac had difficulty with 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 a child with autism through surgery based on their experience:

Kathy suggests parents have to manage the situation, anticipate where there may be difficulties, and plan. Mac is not 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.

1. 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 worry about the upcoming surgery.

2. Watch the virtual tour of the TMC surgery area prior to the day. A child life specialist explains each step along the way. The tour was an opportunity to see how Mac would respond, and for Kathy to formulate questions for the staff. TMC Child Life Specialists work with all children in the hospital to familiarize them with procedures.

3. 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 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 as Mac was waking up.

4. 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.

5. 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 regroup.