Monday, July 15, 2019

Preparing your Child with Special Needs for Medical Procedures

In a few weeks, my daughter will be having a series of tests completed at a hospital. The thought of those procedures gives me anxiety and stress. I know how difficult some of these things will be for Jaycee. I dread them, but they are necessary. One way to manage all that negativity is preparation.

Besides packing for the hospital, I will be trying to help Jaycee understand what will be happening. She has a long history with hospitals, which is sometimes a hindrance and other times a help. Jaycee has an Intellectual Disability and is minimally verbal, so visual aides, repetition, and simple explanations are all important.

Over the years, I have figured out how to best prepare her beforehand and how to best support her during the event. Here are some tools I use:

Videos/Pictures
I love YouTube. Every time I have went to YouTube searching for a video for Jaycee, I have found it. Jaycee connects to videos well, so they are the best way for me to explain procedures we don't do often like CT scans.

The key to using videos as a tool is watch them with your child, narrate what is happening in them, and watch them more than once. Videos are good because they help Jaycee anticipate what will happen and help teach her new vocabulary.

Whenever I can, I try to take a picture of Jaycee in a procedure to use later as a reference. For example, I have pictures of Jaycee during her sleep studies because I know she will have to have it again. I then use that picture to remind her of what will occur the next time she has one. I have similar pictures of her during a CT scan. I can't take pictures of every procedure because it isn't proper or I'm focused on her care, but they are helpful to have as a reminder for her.

Picture Sequence Cards

I have made a few picture sequence cards like this one to help Jaycee with familiar situations that cause her angst. Blood work and IVs are horrible experiences for everyone involved. As soon as Jaycee sees a tourniquet, she starts to panic and reacts defensively. Before she starts to get upset, I try to pull out this sequence card in order to show her what will happen. I have other sequence cards for suctioning and diaper changes, which are things she only deals with while hospitalized. I keep these cards in my purse, so I have them when she needs them. 


Pain Cards

I made these cards for Jaycee, because there was a time when she panicked over every procedure. X-rays, for example, are pain free, but Jaycee couldn't be convinced otherwise for a time. She fought everything due to her anxiety of the unknown, and it was exhausting for both of us. I used these pain cards in different situations so that she could begin to understand that not everything in the hospital is painful. After a few years, Jaycee responded better, and I only pull these cards out now in extreme circumstances.

Doll Demonstrations
Occasionally, we have used dolls to help Jaycee understand what is going to happen. We purchased a hospital gown for her American Girl doll, and I created a hospital wristband for her doll. We have changed her doll into these items prior to Jaycee's planned hospital admissions. Jaycee understands the connection. Jaycee is often reluctant to wear a hospital gown because it means she won't be going home immediately. Therefore, we try to convince her to put one on to be like her doll.

Sometimes, hospital staff have used teddy bears to demonstrate wearing oxygen or IV insertions. This technique has not been helpful for Jaycee, especially when they attempt them on her own dolls. Jaycee has gotten upset during these demonstrations. I do believe part of her reactions are because she understands what they are telling her and isn't happy about it.


These are the ways I have helped Jaycee prepare for hospital procedures. With medical testing coming up, I will be going over some of these things again. Let's pray they work, and things go smoothly!
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Monday, July 8, 2019

3 Keys for Public Outings: Special Needs Edition

The thought of a public outing can create all sorts of thoughts and feelings for moms of children with special needs. Even though it may be challenging, leaving the house is a necessity in life. Moms take their kids to the grocery store, doctor's appointments, playgrounds, and restaurants. These outings may take extra planning when your child has special needs.

I have parented a child with special and medical needs for 13 years. We have learned many lessons together in that time. I'm still learning on how to support my child in public outings even now.

Last week, I took my daughter, Jaycee, to a water park. She wanted to go there; it was her idea. A hot July day wasn't the best choice, but it was the only day my husband was off work. Before we left for the water park, I had a picture of how things would go. I didn't envision a perfect day, but I did expect to be there for 3 or 4 hours.

The first hour we were at the water park, things went well. We swam in the pool. The kids and I went down a water slide a couple of times. We floated around the lazy river. Jaycee splashed and laughed. My son, Elijah, was busy running from one area to another. Then, all of the fun suddenly stopped.

Jaycee walked from the lazy river to her next adventure at a snail's pace. Sensing something was wrong, I encouraged her to sit down and take a break. I offered her a cold drink, and she guzzled it. My husband and I took turns sitting with her for the next half hour. Seeing no progress was being made, we asked Jaycee if she wanted to go home. To which she responded with, "Yes!"

I wasn't ready to leave yet. We were only there for 1 1/2 hours, but 30 minutes of that was sitting with Jaycee in a chair.

As we left the water park, I was hit with a twinge of disappointment. I wish Jaycee didn't tire so easily. I wish the day could have been a little longer. I started to get worked up about the abrupt ending, and then I had to calm myself down. We did what we could. I had to be thankful that we had an hour of fun.

It got me thinking about how far we've come over the years. Jaycee has grown in her ability to handle different public situations. I have matured with my emotions and responses to my daughter. For that reason, I'm offering three keys to managing your child with special needs in public outings.

1. Lower your expectations. 
Lowering your expectations may sound like you are preparing for only bad outcomes. That's not the case. If you have a glowing idea of what may happen when you take your child with special needs somewhere for the first time, you may be disappointed and miss some positives that occurred.

When Jaycee was 5 years old, we decided to take her to the movie theater to watch "Winnie the Pooh." She loved Pooh bear and movies in general, so I thought it would go well. I pictured her sitting in the seat and being elated when her lovable, yellow bear appeared on the big screen. When the lights went down, Jaycee got scared and dropped to the floor. She sat there for the duration of the hour long movie. She never saw any of it. My son, who was only 2 at the time, laughed and watched in delight.

On subsequent visits to the theater, my goal for Jaycee was to sit in the seat for any amount of time. We didn't see movies often, so it took her 4 years to watch a movie from beginning to end. "Cinderella" was the first movie she watched, but she spent the previews sitting on the floor. Now, Jaycee sits in her seat the entire time holding her popcorn and soda like a champ. It didn't happen overnight. I had to have patience and not take her reactions personally, since I was the one planning our outings.

2. Respect your child's limitations.
When deciding on what public outings to attend with your child, you always want to consider your child's limitations. There are some things that I know will be hard for Jaycee. Any outdoor activity with heat means Jaycee's endurance will be short even now at age 13. When she was younger, I had to learn what bothered her, which was frequently discovered through trial and error.

When Jaycee was 3 years old, I took her to a Wiggles concert. She loved the Wiggles, and I was looking forward to a fun outing with my little girl. I purchased seats in the back, because I was unsure of how she would react. I fully expected her to be happy. When the lights went dark, Jaycee started crying. It was unusual for her to cry, and I couldn't calm her down. I tried pointing out Wags the dog and Greg Wiggle to help her recognize what was happening. I eventually had to leave and walk the hall with her. When she calmed down, she immediately fell asleep. My mom and I sat through a Wiggles concert; Jaycee woke up for the final few minutes.

The concert didn't go as planned, and I didn't try to go to another one for a long time. Dark, loud, and unfamiliar places confused Jaycee. For the most part, I tried to avoid these, because entertainment situations weren't that important. It wasn't worth her tears and confusion. She needed time to mature, and I respected her limitations.

Jaycee currently gets very stressed on days we have doctor's appointments. I know it's not a good idea to add anything fun before or after those appointments or she will understandably have behaviors. I respect those limits when possible.

Sometimes, you can't respect limitations because real life requires your child to cope. When Jaycee was growing up, I planned outings to restaurants and stores. Restaurants weren't too bad for Jaycee unless something inside was different, changing her routine. Stores were a real struggle. She wanted to run off and didn't understand dangers in parking lots. It took much mental effort for me to keep Jaycee safe. I couldn't avoid these situations because they were a regular part of life. While I understood that Jaycee struggled in these situations, I needed to push her to learn how to behave properly. On weekends when my husband was home, we intentionally went places to practice walking in a store, staying with a parent, and safely entering/exiting a vehicle. It took years (literally) of practice and patience for stores to be an enjoyable experience for both of us.

3. Celebrate the small victories. 
In all of the unexpected difficulties with your child, it's important to recognize and celebrate any victories. Your victories will probably be small steps in the right direction instead of huge accomplishments. It's important to reflect on how far your child has come and maintain your patience for what is still ahead.


I hope these three keys will help you gain a healthy perspective when taking your child in public outings. As a parent, we can't control our child's responses to different environments and situations. We can only help them through it, teach them when appropriate, and respect what they can't do right now.
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