Surgery for a Family Member

How do you talk to your child with autism when a member of his immediate family is about to have major surgery?

My husband had major surgery six years ago but our child was only two. We didn’t really have to involve him. When he just had the same surgery last week, my husband and I had to come up with a strategy on how to tell and involve our now eight-year-old child.

What did we do?

The surgery was scheduled before the holidays yet the first thing we decided was to NOT tell our child until after the holidays. Our child with autism gets obsessive and we didn’t want him worrying himself and making himself (and us) crazy with questions and concerns for a longer period of time and during a time when he should be having fun. We decided to let him be a kid and enjoy the holidays.

We chose two weeks before the surgery (which was the first few days of January) to tell him. We sat him down and Daddy said, “On the 17th, I have to go to the hospital because I have bad things inside my head and a really, really smart doctor has to take them out. He’s helped Daddy before and he’s going to do it again. When the smart doctor is done getting out the bad thing, I have to stay in the hospital for a few days and then I’ll be home.”

Telling our child the exact date was a good thing because he gets fixated on dates. When it was my turn, I added my plan to take him out of school and spend the day visiting with Daddy at the hospital on the 18th, the very next day after Daddy’s surgery.

He liked that plan for two reasons; he got to miss a day of school and it reassured him that this was only a temporary interruption of his life. Daddy would be okay if the plan was to spend the day with him. That was what he hoped for, anyway.

There had to be an interruption in his schedule, of course. Yet, we did our best to involve him in the Daddy surgery plans because our child does much better when he’s not surprised.

We explained how Grandma needed to spend the night on the 16th because Mommy and Daddy had to get up really early (4am!) to get to the hospital by 5am. We told him that Grandma was in charge of the morning school routine.

On a side note:  We felt letting our child go to school that day would provide a reasonable distraction. We let everyone know, though, that he may be struggling with worry. We told his teacher, his aide, the RSP person, and the principle and they looked out for him a bit more than usual. They were glad that we involved them, too.

We also explained that the neighbor would have to walk him to school on that day because Grandma has a bad knee. Additionally, the respite person was going to be picking him up from school and taking him home until I arrived.

The surgery day certainly wasn’t anything like he was used to. The neighbor had never walked him to school and the respite person usually comes to our home and has never picked him up from his after school care.

We told our child all of the plans to involve him in this unusual event. It also reassured him. He spent those two weeks repeating the plan to us, but my guess is he did that to remind himself that that day wasn’t going to be normal.

The surgery stay went as planned. The smart doctor did his job, my husband did great and he came home on that Thursday. My child and I spent the second day with Daddy, just like we had planned. Our child handled everything really well.

How do you take a child to the hospital?

This was a question I had had since I had never brought him as a visitor to a hospital.

Our child had been a patient in an emergency room just last September so he had had a recent hospital experience. This was good that he at least had had this experience.

What I didn’t realize was how hospitals want a nurse to approve of a child’s health before that child is allowed to visit patients.

I was instructed to take our son to a side entrance. They gave us both name tags but then I had to take my son to another room where a nurse could check him. She really didn’t do anything because she was apparently satisfied with a visual inspection. She approved him right away. I guess if she had had any questions about my child’s health, she might have needed to give him a more extensive examination. Yet, that didn’t happen.

My child and I spent an hour with Daddy in the ICU and then Daddy was moved to a regular room. This room was certainly less scary for our child. He was a bit reluctant to get too close to Daddy while Daddy was in ICU and had these “weird-looking” tubes attached to him. He talked to Daddy but also kept a lot of his attention on his DVD player. We didn’t push anything. There was no reason to force him to engage more. We did not consider this experience a teaching moment. It was just a simple emotional experience.

When in the “less scary” room, our child played chess with another visitor of Daddy’s, and looked more comfortable and was even able to hug Daddy. He engagement level improved naturally. It was really nice to see.

Overall, our child did great. He listened really well and followed the hospital rules (one was to keep his volume at a reasonable level). He only needed one OT break (we found a park next door to the hospital).

Surgery of a family member is a scary event for any family. If this has to happen in your family, try to remember that your child with autism is still a member of your family. He or she needs to be involved in the plans. Your child with autism will obsess about it, that’s typically what people with autism do. So, let them. It’ll reassure them and calm them. It’ll also make them feel like they truly are a legitimate member of the family.

When the stressful situation is over, let them know you appreciated their involvement. This is important for them. And it should be important to you.

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