Journey Into The Unknown — 5 Minutes for Special Needs

Journey Into The Unknown

by Deborah


My new son, Ronnie, is having surgery in two weeks – significant, scary surgery. I’ve been through many significant surgeries with my daughter, Ashley, including brain surgery twice, but since Ronnie just joined my family three months ago, I have no idea how THIS surgery will go.


With Ashley, I can predict exactly how she will respond to having an IV inserted. I know that while she does pretty well for X-rays, she absolutely despises being held down for any procedure. I know how different anesthesia will affect her, even knowing about how long it will take her to wake up in recovery. I know that she needs to be distracted prior to any hospital procedure but once things get serious, she becomes a human sponge for communication.

I don’t know any of these things about Ronnie.

Will he want me to hold his hand during scary times? Would he prefer that I be out of the room when the doctor is doing a full exam of his body? Will the anesthesia make him wake up grumpy in the recovery room? How will he respond to the pain after surgery? Is giving him lots of pain medication a good or a bad thing? Will he hate me if I can’t spend the night with him while he is in the hospital?

I’ve learned so many hospital survival tactics for Ashley over the years but have no idea if they will work for Ronnie.

What would you suggest? Ronnie is 15 years old, has spina bifida, uses a wheelchair for mobility, is profoundly deaf and communicates via ASL. He loves video games and watching TV if the show is closed captioned.

He’s going to be in the hospital for 10 days so I need LOTS of suggestions!

Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.

Email Author    |    Website About Deborah

In addition to her job as a computer engineer and her single parent responsibilities, Deborah is president of a state-wide family support group for families whose lives are touched by deafblindness, and is a tireless advocate for all people with disabilities. She writes at Pipe Cleaner Dreams and her writing has also been featured in local magazines and newspapers. Ashley’s story has also been chronicled in a book by Jonathan Mooney titled Short Bus Stories.

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1 KDL July 18, 2010 at 2:51 am

Can you ask him? If the conversation is difficult via ASL can he use a computer or write to tell you? If he has had other surgeries he might be able to tell you what others have done and whether or not he liked it. Our children’s hospital had tv’s and video games, do you know if that is an option? When my son was in the hospital we watched a lot of shows after he started feeling better. There just wasn’t much else he could do being tied down with monitors and ivs. If he has developed any friendships maybe friends can come by to visit, too.

2 The Fixer July 21, 2010 at 5:23 am

I agree–ask him. It may be a slow back-and-forth, but he can tell just how much support he wants or needs.

3 Leslie July 22, 2010 at 8:14 am

Our daughter came home at 35 months old, could not speak or understand English, and was admitted to the hospital 12 hours later. I understand from the perspective of wondering all of the questions you listed and wondering how she would process all that was happening to her when she could not understand what was being said.

I don’t know Ronnie, but if I had to guess I would say he would definitely want you there when he wakes up and to reassure him before the surgery. As to the others, I agree maybe you could just try and ask him explaining to him that you want to do what he wishes and what will bring him the most comfort. Given his age, I would think offering him the opportunity to ask any questions he has about the surgery and hospital stay would also be good.

I can tell you that a hospitalization immediately upon coming home caused some major trust issues to surface in our DD, but it also helped in bonding and attachment in many ways too.

(came over from NHBO; also appreciate your posts)

4 SSJ July 22, 2010 at 4:00 pm

My daughter was 8 at the time of her last surgery. She was quite grumpy after the surgery as she was nil by mouth for days! She was in the hospital for 5 days and the (few) things that cheered her up were visits by her friends, the hospital’s extensive collection of handheld video games and, believe it or not, the time the in-hospital teacher spent with her playing computer games. Also, they had a play team that worked really well with all the kids. I even saw them playing board games with some of the older kids. This was in the UK so I’m not sure what the US hospitals are like, but, like the others said, just follow his lead and use anything and everything that’s available! Best of wishes to your family…

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