Going to the
Emergency Department

with a Child that has Intellectual Developmental Disorders

Going to the emergency department (ED) can be stressful, especially for children with intellectual developmental disorders (IDD) and their families. This infographic has information to help prepare families and shares tips that might make a visit to the ED less stressful.

Every visit to the ED can be different. With every visit, you’ll learn more about what you and your child need when it comes to healthcare. 

When to go to the emergency department

The ED is where people go for urgent care related to their health. Visit your nearest ED if your child has any of the following symptoms:

  • Difficulty breathing (listen for a wheezing sound, like a high-pitched whistling, or breathing that is very loud or grunting, and look for in-drawing or sucking in of the skin around the neck and between ribs.)
  • Unresponsiveness (if your child is very sleepy, hard to wake, or not responding.)
  • Seizure (when the brain has a burst of abnormal electrical activity. This can cause a person to lose control of their body or have unusual movements, like shaking or being stiff. They can also make people feel confused, stare blankly, or not respond for a short time.)
  • Dehydration (no tears when crying, dry mouth or more thirsty than usual, dark yellow pee, no pee or fewer wet diapers)
  • Blue or gray lips or fingernails and fingertips
  • Cool or pale skin (cool to the touch, or looking paler than normal)
  • Ongoing vomiting or diarrhea (especially if your child can’t drink without vomiting)

What to Expect at the Emergency Department

The first stop at the ED will be at the triage station. This will help the nurse understand how sick your child is and how urgent their healthcare needs are. You may have to wait in line before you talk to the triage nurse. 

Going to the ED for a child with an IDD can be challenging. There might be long wait times before you see a healthcare provider. The ED can be overstimulating. There are a lot of sounds and bright lights. There are usually a lot of people, and sometimes children who are upset. 

 

It might be helpful for you and your child to talk about what might happen at the ED. Our infographic called what to expect at the ED might help. Remember: it’s normal to feel stressed and overwhelmed when your child is sick or needs emergency care. 

Managing Behaviours of Concern in the ED

It might help to let the nurse know about your child’s IDD. Healthcare providers will be working to treat the most serious needs of your child. They may not be treating your child’s behaviours of concern. Remember that they are experts at treating people with emergency medical situations. They may not have training specific to your child’s behaviours or IDD. 

It’s important to share information about how to communicate with your child. You can also share what might agitate your child and what might help calm them. 

 

Staff might use medicine to help manage your child’s pain and behaviours. For example, if your child is aggressive, a calming medicine might be used. This would help healthcare providers treat your child’s other symptoms.

 

TIP: Try to ask for what you might need, like an extra seat or someone to help save your place in line. 

 

The ED might have sensory kits or low sensory spaces to wait in. You might also want to ask if there are staff who have experience managing children who have the condition your child has. 

 

IDD_Graphic-10
IDD_Graphic-11
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Your Role
as a Parent

Your voice matters. 

Remember, you are the expert in your child’s health. You are often the main coordinator of your child’s health. And you know the many providers that are a part of your child’s healthcare team outside of the ED. Advocating for your child’s needs isn’t always easy or comfortable, but you have a very important role in your child’s care.

As you care for your child and have experiences with the healthcare system, you will learn more about your child’s needs. You will also learn the best ways for you to communicate with the healthcare team. You might have tips for them about how to communicate with your child or care for them. It’s ok to share those tips with the healthcare team. It’s also ok to ask ED staff to contact your child’s primary care provider about your child’s medical needs.

TIP: It’s normal to have questions for the healthcare team. If you or your child need more information or didn’t understand something, ask again or ask for help understanding.

Questions to Help You Prepare for a Visit to the Emergency Department

Thinking through these questions might help you and your child have a more positive experience at the ED.

Overall Experience

  • What would help your child have a positive experience at the ED?

Previous Healthcare Experiences

  • When your child was at the ED or in the doctor’s office in the past, were there any problems? Do you think there will be any problems at this ED visit?
  • Are there healthcare staff at the ED you are visiting who have experience with children who have the conditions your child has?

Communication Preferences

  • Do you prefer if healthcare providers speak to only yourself or your child, or both of you?
  • Do you prefer to stay in the room with your child while any procedures are happening?

These are questions that the healthcare team might ask you during your visit:

  • What can help calm your child? Do you have toys, blankets, or other things with you that might help calm them?
  • What upsets or agitates your child? Are there any early warning signs when they are getting upset? Are there triggers that can be removed?
  • Is your child sensitive to touch, sound, light, or movement?
  • What symptoms are bringing you into the ED?
  • Has there been a recent change in your child’s behavior? What is it?
  • Have there been any recent and major life changes for your child?
  • How does your child communicate when they are in discomfort or pain?

Tips from Other Parents

What to Bring

Bring everything you might need for a day and night in the hospital. This might include: 

  • health cards
  • your child’s regular medications,
  • spare clothes,
  • comforting toys or blankets,
  • snacks,
  • phone and chargers,
  • distractions (e.g. headphones, tablet, books)
  • written note with your child’s medical history
Keep in mind that there may not be public wifi. You may be waiting a long time in a crowded and loud space. 

“Bring all the things you need for a couple of days. Bring the snacks, the medications, spare clothes. Bring comfort items, your phone and a charger. Even if it’s only going to be for a few hours.”

What to Tell Your Child

It might help to explain what is happening to your child, and what you expect will happen next. 


It can help to have a toy that the healthcare provider can use to show your child the procedures they will be doing.


“We are always very open and honest with him about what to expect. One thing that works really well for him is like a closed choice. Like, do you want to sit here or there?”

Communication with Healthcare Staff

Healthcare staff are there to help you and your child. They are trained to provide life-saving support and will work as a team to help your child. 


It is important that you work together with healthcare providers to support your child’s needs. You can help by sharing information about how to communicate with your child. You can also share what might agitate your child and what might help calm them. Make sure to tell the healthcare team if your child’s symptoms are not within their normal range.


“I’m very clear about why we are there – like this isn’t just him being lethargic because of his diagnosis.”

Complex Medical History and Diagnoses

You might be asked to repeat your child’s medical history, medication list, and diagnosis information many times during one visit. It may be useful to keep a summary of this information either on a piece of paper or in a note on your phone. That way you can easily show it to each healthcare provider.


“I keep a little note, like a little summary of her history that says all of her diagnoses, surgery dates, medications, and any infections she’s had. So, you know, when the nurse comes in I give that to them. The next nurse comes in and I show them the note too. They can just read it and there’s no worries about miscommunication and I don’t have to repeat myself five or six times. And they can ask me questions.”

Helping Calm Your Child

Breathing exercises can help calm you and your child. For example, ask your child to pretend they are breathing in the smell of flowers and then blowing out candles.

 

You can also use this animation to guide your child’s breathing. Ask your child to breathe in as the object expands and then breathe out as it collapses.

 

If you are in a safe and comfortable space, you might want to try this guided breathing exercise.

Follow-up

If your child was sent home from the ED, they should have a follow-up appointment with a healthcare provider. Ask the ED healthcare team about who your child should see, and when they should see them. If you don’t already have community supports, ask the ED healthcare team. They might know what supports are available in your area.

Extra Resources

Virtual Urgent Care | Sick Kids Online Resource
Scaredy Squirrel Visits the Doctor | Melanie Watt
What to Expect at the ED | Infographic
This infographic was brought to you by ECHO & ARCHE

This research was funded by the Stollery Science Lab Distinguished Researchers program through the Stollery Children’s Hospital Foundation and the Women and Children’s Health Research Institute.

© ECHO Research and ARCHE, 2024. This resource may not be modified, reproduced or distributed without prior written consent of ECHO Research and ARCHE. Contact shannon.scott@ualberta.ca

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Physical treatments can include physiotherapy, prescribed exercise plans, strengthening exercises, massage, and more. 

Psychological treatments can include counselling or talk therapy, supportive therapy, cognitive behaviour therapy, mediation, and more. They can be provided on a one-on-one basis or in a group setting. 

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The information contained in the video/multimedia content (the “Multimedia”) is provided on an “as is” basis and is offered for general information and educational purposes only; it is not offered as and does not constitute professional advice. There is no guarantee about the accuracy, applicability, fitness or completeness of the information found in the Multimedia. This information is provided without warranty of any kind, and the University of Alberta, its agents, employees, and students disclaim responsibility to any party for any loss or damage of any kind that may arise directly or indirectly as a result of the use of or reliance on the information contained in the Multimedia.

These resources may not be modified, reproduced or distributed without prior written consent of ECHO Research. Contact shannon.scott@ualberta.ca.