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!

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.

Incontinence Products for Older Children

Incontinence can be an issue for many children for a number of reasons. Developmental delays or intellectual disabilities may result in a child being potty trained later than expected. Medical problems such as constipation, food allergies, obstructive sleep apnea, or other digestive issues could further complicate bladder and bowel control.

There are many products available to help with incontinence. Several items are available through the Home Delivery Incontinent Supplies website, including the ones discussed below.

First, let's talk diapers.

Everyone mother knows the diapering options for babies and toddlers. After the size 6 diapers or pull ups available in most chain stores get snug, the next option may be lesser known. Welcome to the world of "adult" diapers. The hip size or the person's weight determines sizing for these diapers. There are "extra small" options, so you can most likely find the size you need. You can find these in the adult diapering section of stores or look online for a wider variety of options. Depending on your health insurance coverage, you may be able to get diapers covered for your child if they meet certain requirements.

Now, let's talk wipes. Baby wipes are useful no matter how old your child is. Sometimes, you may need something a bit bigger though.

Reassure makes personal cleansing washcloths that require no rinsing. They are about twice the size of a regular wipe. They are durable for situations that require extensive cleaning. Personally, I keep some of these in my purse for when my daughter is in the hospital, which often results in different toiletry needs than at home.

Finally, let's discuss underpads. Underpads are a must if night wetting is an issue. A disposable underpad is a great option for a few reasons. If there's a mess, you can simply throw it away and be done with it. If you are traveling, the disposable pads are perfect because they are thin, lightweight, and disposable.

Disposable pads are often secured with a sticky strip or sticky area underneath. The cheaper ones tend to provide less of a sticky strip, which means they don't stay put if there's a lot of movement. If your child tosses and turns all night, then the disposable pads may end up in a wadded mess. If this has been a problem for you, you may want to consider washable underpads.

Washable underpads have the opposite pros and cons of the disposable ones. If there's a real mess, you have to clean the mess to reuse the pad. If you need them all the time, you will be lugging these on trips and possibly washing them when traveling. On the contrary, these will stay put and provide great protection. They are thick, durable, and won't slide around in a bed or chair. They are very absorbent and protect sheets and mattresses well. 

These are just three different products you may need if your child with a disability or medical issue has incontinence. There are many more products to meet your family's needs; you just have to know where to look. Hopefully, I have pointed you in the right direction. 

The Aftermath of an Illness

My house has hints of what's transpired over the past few weeks littered about in various rooms. The kitchen has more syringes in the drying rack than usual. The thermometer and small pulse oximeter have taken residence on the kitchen counter. Four extra medications sit beside them. Next to that, a notebook filled with pages of documentation regarding medication administrations, heart rates, and oxygen saturation numbers lays open-ready for more notes to be added.

In the living room, discharge instructions from the hospital lay on my side table. Two sets of nebulizer masks and tubing sit beside family photos.

In Jaycee's bedroom, the familiar bi-pap takes its usual place next to the bed. Added to the mix of equipment is the bigger hospital grade pulse oximeter to monitor Jaycee while she sleeps. It's pointed directly at the video baby monitor, which feeds into my bedroom at night. Tape, to secure the probe, is within an arm's reach.

The last few weeks have revolved around my daughter's respiratory illnesses. Her combination of Down syndrome (narrow airways), asthma, obstructive sleep apnea, and a poor cough response means that a small change in her respiratory status can bring about serious breathing problems. Daily, we do inhalers, hypertonic saline nebulizer treatments, and vest airway clearance to keep her lungs in "best" state. Her interventions increase with the onset of the slightest symptom.

At the beginning of May, Jaycee had a respiratory flare up after flying on an airplane. By the time we flew home from our short trip to Vegas, we were attacking the illness (or whatever you want to call it) with albuterol treatments, steroids, and frequent monitoring. Just as she was starting to improve she caught a cold that my husband and I both had. Her breathing was audible at times as the cold brought on coughing and snot. We made more trips to the doctor, calls to pulmonary, started another round of steroids, and kept on treating her at home. By the end of week three, I was ready for her to be well.

As we came home from grocery shopping, I told my husband, "I think Jaycee is finally getting better. Maybe my stress level will start to decrease." Earlier in the day, she had energy to play with her cousins. She laughed at jokes during a family celebration. She ate the delicious fish and cupcakes.

Ten minutes after I made that statement, everything changed. As I drove home, I said, "Jaycee's breathing sounds weird." I couldn't see her, but my ear is finely tuned to hear the slightest change in her breathing. My husband reported she was fine- simply trying to sleep.

"That's probably a bad sign," I said.

It was. The emergency inhaler and small pulse oximeter we had carried around all day came in handy as we started giving medications and checking her numbers. I pulled off the highway to see that her fingers and lips were blue. I knew the number would be low; it was.

My son sat next to her in the van saying, "I don't understand what's happening."

The day was so ordinary just hours before this occurred. A smile had been on my face where a worried look appeared most days prior. Things were going well until they weren't. My family was shocked as I told them the news. No one could believe the change in her respiratory status, except they could because it's happened in the past.

That led to 48 hours in the hospital over Memorial Day weekend.

It was a short admission for Jaycee. Like usual though, Jaycee needed intense around-the-clock interventions and monitoring once home. Her recovery was slow. At the time of writing this, she's yet to get back to her normal baseline, but she's inching closer.

I see the illness in different parts of my house. I feel the effects of the illness in my own body and mood. I hear the difference in my daughter's breathing. I listen to my son talk about his concerns after witnessing his sister turn blue. This is the aftermath.

If you have read this post and can't relate to any of this, you are blessed. If you have never been through a medical emergency with your child, you are blessed.

Do you want to know something? I'm blessed too. Blessed is a perspective. Yes, in the middle of her respiratory distress, I didn't feel blessed. However, I knew I was, even if I didn't feel it. Stress, fear, worry, and exhaustion are all strongly felt during Jaycee's illnesses. However, I also know that we are in this together as a family. We're looking out for one another. We're carrying each other's burdens and thinking about the needs of someone besides ourselves, which was a bit challenging when this illness was happening during my birthday. Still, I know what's important in the long run.

An illness brings an aftermath. God meets me there helping me through all the cares of this world to more effectively love my children.

A Special Hope

On Saturday, an interview I did with Sarah from a Special Hope Podcast went live. We had a great conversation about my life, parenting children with special needs, caring for a child who is medically complex, faith, and things that go wrong when shopping at Kroger. There were serious moments and funny ones.


You can listen to the podcast by clicking this link.

You can also do what I do and listen to it on your Apple iphone's podcast app. Search for "A Special Hope" and look for episode 9.



All of the show notes and additional podcast information are here.

What I Learned from a Fall Down the Stairs

It was a typical Saturday morning. I was attacking the laundry pile, planning for the upcoming week, and completing housework. I recruited my children to help with the polishing in the bathroom. Jaycee dusted the doors. Elijah wiped down the baseboards. I worked on the wooden vanity. When we were done, the children were released to do whatever they wanted. They both ran to their electronic devices. Elijah started watching videos in his room. Jaycee sat in her spot on the couch to start a marathon of YouTube videos.

I gathered up a few more items I needed to take down to the washing machine located in the basement. Unbeknownst to me, my socks had collected the furniture polish that had settled on the bathroom linoleum floor. As soon as my foot hit the first wooden step, I was doomed.

I bounced and fell down the entire flight of stairs. My feet, left arm, and hips took hit after hit as I descended rapidly. I yelled, "Ow," several times on the way down. In an instant, it was over. I remained at the bottom where I landed trying to check my body and recover from the shock.

Stock photo-not the actual stairs that injured me

Within 30 seconds, my daughter made her way to the top of the stairs. She was still holding her beloved iPad as she asked in her broken speech, "Mom, you ok?" 

"No," I replied trying not to cry. My arm was throbbing. 

Jaycee dashed away from the steps out of my sight, but I could hear what she did next. She ran to her brother's room and cried, "Bubba, Momma!" She repeated herself a few times on the verge of tears. 

Elijah finally yelled out, "Mom, what's Jaycee saying?"

I couldn't respond to him. Yelling from the basement wasn't possible with my pounding head. Soon, he asked Jaycee to show him, and Jaycee led him to the stairs where my laundry was scattered about just above where I was. 

Thankfully, I was merely sore for a few days and acquired some large bruises, but there was no major injury. I rarely find myself in a situation where I am in need of rescuing, but I did need help that ordinary day. 

I was so proud of my daughter. She heard the fall. She checked on me. She got help. She did everything correctly. Despite having Down syndrome, an Intellectual Disability, and limited verbal speech, my daughter was able to assist me. Even though I wished my slick socks hadn't led to a terrible fall, I'm glad I discovered what my daughter could do. 

On that day, she was my hero! 

Special Needs Tip: Reasons to Visit Holiday World

Nestled in a quiet, little town of Santa Claus, Indiana is the friendly and impressive theme park, Holiday World. With summer vacations on the horizon, this is a place you need to try to take your family, especially if you have a member with special needs.

I live roughly two hours away from Holiday World, so I had a few visits there during my childhood. I have fond memories of riding roller coasters and eating snacks. (You always do them in that order.)  Even though I had good experiences there, I was reluctant to take my children to Holiday World. My daughter, Jaycee, has Down syndrome, is minimally verbal, is not very tolerant of the heat, and has a complex medical history (two heart ablations, two open heart surgeries, multiple bouts of pneumonia requiring time in the Intensive Care Unit, etc.). I knew Jaycee's Intellectual Disability would make it difficult for her to understand how lines for the different rides work. Her stamina isn't the best either, and theme parks are usually exhausting even if a wheelchair is used. Frankly, it's hard to know how my child will respond in any new environment.

In 2015, my daughter was blessed to have been granted a wish through Make-A-Wish. During her wish trip in Florida, she was given a special pass that allowed free entry into other participating theme parks. Holiday World offered an unlimited number of free visits to our family for an entire year. They were beyond generous to me (and so many other families). Since we had nothing to lose, my husband and I took our children to the park. To our surprise, we absolutely loved it! They had many features that were a good fit for our family. We went several times during our free entry period. We loved it so much that we ended up becoming season pass members in 2016 and 2017. Last year, Jaycee's health kept us at home a bit more but we managed to make a trip over.

If you have a loved one with special or medical needs, I would like to share with you why visiting Holiday World may be good for your family too.

Disability Boarding Pass 

The boarding pass allows a person with a disability and up to 3 other guests wait in line without actually waiting in line. Their pass works similar to other theme parks, if you have ever used them. To use the pass at Holiday World, you typically enter the ride's accessible entrance, which is usually the ride exit. The ride attendant will write down a time for you to come back on pass in order to board the ride. The time given is based upon the current wait time. You can only be "waiting in line" for one ride at a time, but you can use the restroom, grab a snack, or sit in the shade while waiting. This is how the pass works in order to ride the popular attractions such as the Mammoth, Crow's Nest, and all the coasters.

For some of the rides that tend to have shorter lines in general, the pass allows you to wait at the handicap entrance and board at an appropriate time depending on the line length (usually a few cycles) rather than getting a time and returning.

This pass has been helpful for my daughter because she can stay seated in her wheelchair while waiting. Generally, the wheelchair will not fit through the railed waiting line that everyone else uses, and standing for 20 minutes in the heat can wear her out. We try to go to Holiday World during the week when crowds are smaller, so waits are typically short. However, the boarding pass helps Jaycee do more than she would otherwise be able to do.

The Calming Room 

Like many other venues, Holiday World has a calming room for individuals who may need a quiet and relaxing break from all the fun activity at the park. We have not used the room, but it may be a benefit for other families.

Air conditioned Restaurants

Because my daughter doesn't do well in the heat for hours, we try to dine at restaurants with air conditioning to allow her time to cool down. Plymouth Rock Café and Santa's Merry Marketplace are two places that have a large amount of seating indoors.

Accessible Water Rides

Holiday World has a superb water park called Splashin' Safari. Splashin' Safari is quite large, so we have to use Jaycee's wheelchair when walking to our desired attractions. Fortunately, Jaycee's wheelchair has material that dries quickly, so this is an option for us.

Water slides and water parks generally mean long lines and lots of stairs. The fun, long slides have flights and flights of stairs. Jaycee can maybe do one of these before tiring out. The fewer the steps, the better for her. There are some slides that have a short flight of steps, so this is a better option for her. There are two different wave pools, which of course has no steps and is accessed easily. There are a couple of areas with small water slides meant for younger children that are accessed by a ramp as opposed to stairs. These are easier for Jaycee too.

The biggest selling point for us about Splashin' Safari is that the two best water rides are accessible! The Mammoth water coaster and the Wildebeest are both accessed by ramps, not steps. These are both popular rides, so the boarding pass is needed for these. We usually "wait" at the wave pool until her ride time occurs. Then, we are able to push her up to the ride entrance in her wheelchair. Jaycee loves these rides! She laughs and laughs while I tend to scream and scream on them. We love that these are accessible for her because her ability to access most of the other ones in the water park is limited by stairs.

Accessible Tree House 

Holiday World has an amazing Holidog's Tree House playground for children. The best part is that it is wheelchair accessible!

Other Stuff

Parking is free. Hooray!! There are plenty of handicapped spaces in both of their parking lots too.

If your child loves characters, you can find Santa in the Christmas area several times a day. There are a few different characters to meet at the park as well.

If your child likes mild rides, there are plenty of choices available for that need. Of course, there are plenty of thrill rides.


If you are looking for something to do with your child with special or medical needs, then I would suggest giving Holiday World a try. It's been a hit with our family!