I believe it’s important for every CCLS working in the hospital environment be knowledgeable on how to meet the unique needs of kids with developmental disabilities and their families. Often times, developmental disabilities are associated with chronic health conditions resulting in some sort of medical intervention(s) during their lifetime. That being said, these kiddo’s are often a top priority for me when I check my census each morning. So, how do I help these patients? Lots of ways!
- Play! Here’s a tactile stimulation activity I set up for one of my patients. Even though some kids are non-verbal, they still have likes and dislikes even when it comes to play. Ask mom/dad/caregiver for any preferences the patient may have. If it’s just you and the patient, figure it out! Talk to them, laugh with them, play with them, see how they react when you help them engage in the different activities. The patient I took this activity to LOVED the feathers but she absolutely did NOT like the slime – haha!
- Volunteers! Just like their typically developing peers, kids with special needs get bored too! Especially spending long hours in the hospital setting away from their routines. Don’t be afraid to have your volunteers visit these patients. Introduce your volunteer to the patient and model some appropriate play opportunities. Often times when I have patients that are admitted without family members at the bedside, I create an “about me” board as if written by the patient along with toys/activities I know the patient will enjoy. The “about me” boards are bright, handwritten, and easy to spot by any volunteer or staff that goes into the patient’s room. I write something along the lines of:
- Hello Friend! My name is ______ and I am ____-years-old. Thank you for stopping by my room to play with me! Some of my favorite things to do are: listen to friends read to me, listen to the radio, squeeze play-doh in my hand, hold toys in my hand, and just have fun. There is a basket by the window where you will find some of my favorite toys and activities. If I need anything while we’re hanging out, my nurse’s phone number is on my whiteboard. I can’t wait to start having fun!Love, _________
and Diane, my child life specialist (extension #)
- Resources! I’ve found many items that have proven to be very helpful for pediatric patients with special needs. Whether for support/distraction during a procedure, for relaxation and coping, or for recreational play, I’ve compiled a list of some of my favorites. Click: http://a.co/2wbxj0E What are some of your favorite resources to offer this population?
There are tons and tons and TONS of resources out there on working with kids with developmental disabilities in the hospital. Do your research!
Still feeling a little nervous about helping patients with special needs? There’s no need to be nervous! They are just like their typically developing peers – yes… really, they are! One of my favorite pages on Facebook will prove it to you. Click here: https://www.facebook.com/specialbooksbyspecialkids/
Taking medicine isn’t always easy – especially when it needs to be taken every day for an extended period of time. Non-compliance with taking medicine can also cause a great deal of stress for parents, especially when it’s the one thing keeping the patient from being discharged. One of my patients was having a hard time with this task so to make things a bit more tolerable, we decorated her medicine cups. This patient really wanted it to be grape flavor however we couldn’t give her that option for this particular medication. To try and fix her grape craving, we stuck with the grape theme for her medicine cups. The medicine is still unpleasant, but creating these cups & giving her choices made the whole process a little more tolerable. What are some ways you help patients be compliant with taking their meds?
I recently had a patient that was unable to speak after a surgical procedure. She was developmentally appropriate and had no prior history of hospitalization so all of this was new and very frustrating for her. Her nurses came to me asking for help because she was having a very hard time communicating with them.
Here’s what I knew: she enjoyed playing on the iPad but did not have the strength to hold it up to type, she didn’t have the fine motor skills she once had to be able to use a marker/paper to write, and she had no family at his bedside to speak for her. I began to think of what she can do rather than what she can’t…. that’s when my creativity light bulb lit up! I created a communication chart for her.
One thing that she could do is move her arm/hand around and point. That was perfect! I found a chart with a couple of key phrases and emotions on it via google images by searching “communication chart”. I also created an empty template for her and her nurses to include more personalized phrases. I put both sheets into a sheet protector with a piece of cardboard in between so that it was sturdy and ta-dah!
My patient and the medical team working with her loved this communication chart and it truly helped her have a voice again.
This is a topic that I hold very near and dear to my heart, so much so that I am working on my masters degree in developmental disabilities! As like any new Child Life Specialist, it’s already challenging enough to master the art of effectively matching appropriate interventions to a patient’s temperament, family influence, and medical procedure, while working alongside the multidisciplinary team and balancing everything else that comes with the job. Now throw into the loop a child with a developmental disability with whom you have little or no experience in providing support and services for, things can surely become overwhelming. Remember, I work in an emergency room so my scenarios (with any patient) are often quick, urgent, and stressful. So, what’s my game plan? How can I provide Child Life services in a situation where my usual go-to interventions may not be as effective?
First and foremost: ask the parent/caregiver! This is your best source of information because they know exactly what their child needs to cope and feel most comfortable. I will often introduce myself to the patient and the family and then ask them how I can help their child – what form of distraction works best for them? are there any particular environmental changes I can make to help him/her feel more comfortable (dimming the lights, allowing him/her to sit on a chair vs the bed, warmer temperature in the room)? what is his/her favorite cartoon/character?
After speaking with the parent/caregiver, I will have some information in my back pocket on how I can adjust my interventions for this unique situation. Also, I always make sure and have specific toys set aside for kids with special needs – tactile sensory toys, toys that light up, toys that make noise, puzzles with pegs, etc.
I had a chance to ask parents of children with special needs what they felt are some things that heath care professionals can keep in mind when working with their child. Below are their responses:
Please be mindful that just like their typically developing peers, children with special needs are all unique in their own ways – there is no “one size fits all” intervention. What may work for one child may not for another, regardless of their disability/diagnosis.
- iPad for distraction
- Asking the doctor to remove his/her white lab coat before entering the room
- Providing sensory friendly toys
- Dimming the lights
- Providing ear mitts to reduce all the noise (it’s easy to forget how noisy the hospital setting really is – everything is beeping, overhead PA, constant new people walking into the room, phones ringing, medical equipment, etc.)
- Fluorescent light blocker
- Lead vest to weigh down on the child (maybe your radiology department has an extra one they can lend you!)
- Bean bag toy ( http://www.orientaltrading.com/reinforced-bean-bags-a2-61_4000.fltr?Ntt=bean%20bag )
- Disney Soundtrack
- Not spending a long time in the waiting room, being a priority to get into a room and be seen
- Having animal figurines for him/her to play with
- Having candy such as bubblegum, lollipops, or skittles (this one depends on a LOT, be sure to not only check with the parent/caregiver if you can provide this, but first and foremost the nurse/doctor)
Do you have any tips I didn’t mention? Comment below and let me know!
The other day I had a patient (10yo) come into the ER with her mother and younger sister (6yo) via ambulance for a laceration. The two girls were doing backflips into the pool and well, one of those backflips didn’t end so well. I went into the room and the patient seemed to be coping very well. I provided a procedural teaching for the patient, sibling, and mother, answered her questions, and developed a coping strategy (counting to 10 and taking deep breaths). I also set up the girls with a movie and some coloring sheets to pass the time before the procedure started. When the time came, I was ready to be present for the procedure but noticed that mom was helping her daughter cope very well and that the person that really needed support was the little sister! She was sitting on a chair in the corner covering her ears and shutting her eyes as tightly as she could (the doctor was still setting up her supplies). I asked if it would be alright if little sister and I waited outside and both mom and little sister agreed.
She and I sat at a nearby table outside of sister’s room and made her a Get Well card. It was at this time that little sister started to explain to me how scary it was when her sister hit her head at the pool, how scary the ambulance ride was because they were going really fast, and how she’s scared about what they’re doing to her sister. I addressed all of these fears with little sister, all the while validating her feelings and helping her cope with the scary Sunday she was experiencing. I gave her the opportunity to tell me her side of the story of what happened at the pool. I was able to teach her a little bit about the ambulance and how they help get people to the hospital quickly and safely. And, I did my procedure teaching again, more slowly, and made sure she understood and felt comfortable with the steps. I was even able to show her my Mermaid ( https://adventuresinchildlife.com/2014/07/14/iv-sutures-prep-doll/ ) so that she could see & feel what the sutures would feel like afterwards. In the end she was more relaxed, understanding, and most importantly confident & comfortable to walk back into her sister’s room when the procedure was over.
It’s clear that in this scenario little sister needed support from her Child Life Specialist! It’s easy to develop a “tunnel vision” when working with patients and addressing their needs and concerns but it’s important to always remember to be alert and aware of family members and how they’re coping, too!
Often times when people learn about what I do I get sympathetic responses and gasps with comments like “that is so sad”, “I could never do that”, “how are you able to emotionally handle such a sad job”. And while yes, sometimes situations can be VERY sad, there are always more good days that bad days! Just to prove that, I’ve decided to share some stories of the good days that make it all worth it!
Earlier this week, I was helping a 7 year old girl with an IV start (I work in the ER) which she’s had many times before so she immediately started crying and screaming when the doctor told her she was going to need one. I heard the commotion from the nurses station so I quickly grabbed my “bag of tricks” and went right into her room. We talked for a little bit while the nurse was setting up; about school, things she likes to do for fun, favorite foods, her family, and Halloween plans. Once I noticed that she had become more comfortable, I brought up the IV. We came up with a plan all based on her choices of how she would like things to happen…
- She and I would play on the iPad while they did it
- The iPad would block the view because she did not want to see
- The nurse would first look on her left arm rather than her right arm
- The nurse would count to three and poke AFTER three
- She would follow the 1 rule which is: do not move your arm.
The time came for the IV start and she did AMAZING! She did so great that mom started crying saying that in 7 years, this was the first time that she hasn’t had to be held down while she kicked and screamed. Not only was everyone in the room extremely proud of her, she was SO proud of herself! You could see it in her face how HAPPY she was that she didn’t need to have help to hold still. The mother thanked me for everything I had done but really, it was all her daughter! By giving her choices when she felt there weren’t any, she regained control over the situation and chose what she felt would be best for her.
I’m so excited that I found this awesome 2-in-1 bubble wand with spinning light on top! This works great for distraction – especially with toddlers/preschool kiddies whose attention span isn’t always the longest. I bought this little gem at Walgreens in the Spring/seasonal isle for $3.99. Happy bubble blowin’ & light spinnin’ fellow child life-ers!