Hospital visit with my Special Needs kid

A sick child is always the mother’s property; her own feelings generally make it so. Jane Austen

adriana pillow

My daughter has been sick all week and while she is feeling better, because of her Type 1 diabetes, things can turn sour so fast it is truly frightening and I have learned to be prepared. One of the worst things I can tell her is that we must go to the hospital. She has been in the hospital several times, and each time for more than a couple of days.

The first time she had to go to the hospital was when she was diagnosed with diabetes. One of our close relatives has Type 1 diabetes so I knew the symptoms. I can tell you we had no idea what we were doing and what our new normal was going to look like.

Emergency Room

There will be a difference from the Emergency room (ER) visit and the scheduled hospital stay. Regardless of which one it is we want to make sure both you and your child are taken care of. The hospital will take care of the medical needs; you need to make sure you take care of yourself and your kid’s emotional well being to assist the doctors and nurses.

  1. Medications

When we go to the ER I try to make sure I have a list of my daughter’s medications, sometimes I just take the bag with all of them. There are many apps these days that help you keep that information up to date.

  1. Clothes

The next thing I think about is her comfort and what I might need while we are in the waiting room or the actual ER. We have a back pack with an extra set of clothes, socks and a small toiletry bag for her not only for hospital visits but for any accident she might have at work or when we go out. She wears an insulin pump for her diabetes so this bag also contains extra supplies for her pump. We have been lucky and come home after an ER visit but there have been other times we have been admitted, so having these things has helped.

  1. Comfort items

When we are talking about kids with disabilities we need to think about those things that make them feel safe or less scared like their favorite toy, blanket or music. I don’t recommend taking electronics to the hospital unless they are there to help with communication or as a coping mechanism.

Scheduled Hospital Stay

For a scheduled Hospital stay we took a somewhat different approach. Adriana had her tonsils removed when she was about 12 years old; however, we wanted to make sure she knew what was going to happen.

  • Be honest

When going to the hospital, experts recommend to tell the children the honestly and truthfully why it is that they are going to the hospital. Use words that they can understand, it may help to use books about going to the hospital. If you child uses alternative communication, learn the signs or use an app that can assist you with those hospital words so you child can understand.

  • Hospital tour

We talked with the doctor and they gave us a tour of the hospital. The doctor took the time to tell us everything that would happen and who would be there to take care of her. Remind you child that doctors make people feel better. This really made a difference because she was able to go with the nurses into the Operating room, without us and without feeling afraid. She knew the people that were there since she had already met them. Meeting people that are going to work with her has always been very successful for us. It has allowed Adriana to be a little bit more in control of the situation.

  • Explain the disability to the Hospital staff

Not all medical professionals meet or have the chance to work with children with disabilities, so take the opportunity to  let them meet your child. This can give you some time to explain to the staff their cognitive delays, other medical issues, the things they like and didn’t like, their favorite color, etc.

  • Pain chart

Another thing that has helped us is to help our daughter verbalize her level of pain, not just say we have an “owie” or a boo-boo, those really don’t help the nursing staff assess how kids are feeling. We have used the face pain scale for kids for that.

  • Other procedures

Adriana has had blood drawn from a very young age, so she is no stranger to this process; this doesn’t make it any easier since the nurses have a hard time finding her veins. One place for kids has a wonderful social story about going to have a blood test

  • Parents’ needs

As for me, there are very few things I need. However these days we don’t need quarters for the payphone, we need chargers for our phones and tablets if we use them, a water bottle, a few snacks, comfortable shoes, socks, and patience.

Good luck whatever brings you to the hospital.


Resources

What is diabetes – http://donate.jdrf.org/info/jdrf-qa/#about

Books for kids:

Luz Adriana

My name is Luz Adriana Martinez and for the past 27 years I have been working in the field of advocacy for children with disabilities. I hold an MBA from the University of Phoenix and a BA from the Inter-American University of Puerto Rico. I'm married to a great guy, Tito, an Army Veteran of 22 years, who supports all the crazy things I do. Being an Army wife also prepared us to be always on the move and without daddy for long periods of time. This also gave me the opportunity work and volunteer with organizations whose mission was to assist other military families. This blog results from my desire to give back to the many families that have given me and mine so much. I have had the fortune to be able to travel the world assisting military families and now that that stage of my life is over, I want to continue to share what I have learned in the hopes that I can still provide some information and resources to families who need it.

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