Thoughts on My Child's Illness

Hey there readers! Thanks for stopping in!

I am so thrilled to announce that I am writing for Key Ministry this year! Key Ministry's mission is to provide knowledge and experience to church leaders so that people with disabilities and their family members can worship in a local church. They have many resources for the church and families of individuals with disabilities, which you need to check out if you haven't already.

Yesterday, my first post went up on their website. I'd love for you take a read. If you like it, please share with others, so that more people can read it as well.

Please Excuse My Poor Church Attendance

On another note, a recent post of mine ran on The Mighty website. In case you missed it here, click on the link to read that story:

I Fear ER Doctors Won't Take My Daughter's Health Seriously

Thanks for being faithful readers! Coming up: On Thursday, I'll post another therapy tip. Next week, I'll have a fresh new post for you too!

Therapy Tip: The Easy Way To Grow Language

It is Thursday! That can mean one thing here on the blog. It is time for a tip based on my experiences as a mother of a child with special needs and a pediatric speech-language pathologist. Today, you will most likely have this material in your home to make this tip happen.

Books: The Easy Way to Grow Language

I cannot stress enough the importance of books for all children. This is especially true for young toddlers and children with language delays. If your child has a diagnosed language delay, daily book sharing is a great activity for you to do with your child. I know it seems simple, but book sharing achieves many language and development skills.

Here’s the thing, there are many toddler with delays that won’t sit for a book. I get it. I have had some of these kids in my therapy practice. They can be challenging but I try to attempt a book at least once in my session in order to build their tolerance to book. Why? Because I know how great they are. Here is what is happening during book time:

1. Vocabulary building: This is the obvious thing books target. When you read your child a story or simply look at pictures in a book, you are teaching them words. They are hearing the names of things. They may hear concept words like on or off or they may hear animal sounds. The words you are saying are helping them. If you get through one page, then yay! Maybe tomorrow it will be two pages. Start where they are at and talk and read to build vocabulary.

2. Attention span & listening: Your baby and toddler needs to be able to sit and attend to a short book. This is a skill I try to develop in therapy. If the child hates sitting still for a book and prefers to be up and moving with toys all the time, then they need to learn to sit briefly for a book. This is an important skill to develop in life in general but also to start building their attention span and listening skills. Kids who tend to like lots of input from movies or tablets may not appreciate the simplicity of a book, but we need to get them there. We need them to listen, focus, and attend to the pictures. Some kids I see in therapy will do books for more than five minutes. Other toddlers struggle to attend for thirty seconds. See where your child is and build from there.

3. Identification/pointing: Pointing is an early gesture that is so important. A child points to say look at that or I want that. Pointing then leads into identifying, which is an important language skill tested early on. We ask the child, “Where is the ball?” The child will hopefully respond by pointing to the right picture. Then we move to harder tasks like pointing to actions in pictures or specific colors in books. Identification tells us what a child understands. It also requires them to listen and look at the book with us as opposed to them quickly turning pages.

Almost every home I have done therapy in has had at least one book in it. Books are so important for children for a variety of reasons including the ones I listed today. Don't underestimate the usefulness and power of book time with your child with language delays. Now go grab a book, and get to it!

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Therapy Tip: Selecting Books for Toddlers

Therapy Tip: Using Books to Build Language

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

What I Fear When Driving my Child to the ER

The automatic door slides open. I push my daughter in her wheelchair into the building, sometimes tugging an oxygen tank behind us. The bright lights hit my tired eyes while my feet walk in a fast pace up to a counter. The staff in nursing uniforms greet me and take down my daughter's information.

I hate that I have to go to emergency rooms. Unfortunately, I have had to use them multiple times with my daughter over the years. Jaycee's combination of health problems have resulted in dozens hospital admissions for respiratory issues that have all began in emergency rooms (ER).

The biggest challenge with ERs is that the doctor doesn't know my daughter or my family personally. I have found that some doctors or staff assume that I am just some paranoid parent overreacting or that I'm at the ER for ulterior motives. Some doctors don't take the time to review my daughter's extensive history or listen to my concerns. When this occurs, my daughter doesn't get the care she desperately needs.

I have had some terrible experiences in the ER. Several years ago, Jaycee's breathing became labored while we were coming home from an outing. We stopped by a local ER on a Friday night to get her checked out and possibly get medications. We met with a doctor for a couple of minutes and an x-ray was completed. Nothing else was done. We sat there watching Jaycee's vitals on a monitor. Her heart rate was extremely high and her oxygen saturations were low. There was no breathing treatment given. No oxygen. Nothing. We sat in a small room inside a busy ER being ignored. Finally, a nurse showed up with discharge papers because Jaycee didn't have an appendicitis. Talk about confusing!

We demanded to speak to the doctor who never bothered to come talk to us again, but her shift was over. The doctor who took her place was just as confused as we were but looked at her vitals, listened to us, and called for a transport to a children's hospital. A helicopter came, oxygen was given, and Jaycee finally got the help she needed.

Even the ER at the children's hospital has gotten it wrong. A couple of years back, we took Jaycee to the ER late one night because she had a junky cough, and her oxygen saturation levels kept dropping at home. I will admit that Jaycee didn't look sick and that was part of the problem I am sure. When Jaycee quickly went through triage at the ER, her vitals were on the borderline of needing oxygen. At home, her numbers were bouncing around so staff had to watch it for more than 30 seconds to see the problem. We were escorted back to a treatment room and an x-ray was taken to investigate the cough. Jaycee was never given a breathing treatment. She was never placed on the monitor, which was highly unusual, given we had concerns about her breathing. Nothing happened! All the while, my husband and I grew anxious that Jaycee wasn't being helped!

A few hours after arriving, a doctor came into the room to discharge Jaycee. My husband and I were furious, and my husband said he wanted to talk to someone else. The next doctor entered to give us reasons why Jaycee was fine. We disagreed. He humored us and placed Jaycee on the monitor. It was then that he realized that Jaycee needed oxygen...and a breathing treatment...and ICU!

I can give you a half dozen stories that exemplify the worst of our ER experiences. I mean, let's not forget the local ER doctor who asked if my child with Down syndrome was a "mongoloid."

On the other hand, I can give you a half dozen stories in the ER that went extremely well. The last couple of ER trips have been near perfect. We were seen soon after arrival, the doctors listened to me, and Jaycee was promptly diagnosed and admitted for treatment. The nurses and doctors were all kind and tried to make Jaycee feel comfortable. These good experiences are how I wish it was every time I enter an ER.

The problem is I never know what I'm going to get. I don't know if I'm going to have to convince the doctor that my child is sick. I don't know if I'll need to take our own inhalers inside because they won't give her a breathing treatment. I don't know if I'll need to ask the doctor to put my child on a monitor or do basic tests. I don't know how the doctor will respond to me, my daughter, or my situation. All of the unknowns make me even more anxious in a situation that is already stressful.

On the drive to any ER, I get fearful and worry about my daughter's health as I try to get her medical care as soon as possible. I also worry about what will happen when we arrive. I never breathe a sigh of relief until the process has started at the ER and I can tell that Jaycee will get the treatment she needs. If not, I'll speak up and be her voice.

But, I'd rather someone take my voice seriously the first time.

Therapy Tip: 5 Ways to Break Screen Time

It's Therapy Thursday! This is the day that I share a tip based upon my experience as a mother of a child with special needs and a pediatric speech-language pathologist.

Last week, I shared how screen time needs to be avoided in toddlers, especially those with language delays. If you missed that post that shared the recommended screen time guidelines and why screen time isn't great, then CLICK HERE TO READ IT.

Today's tip is a follow-up post from last week:

5 Ways to Reduce Screen Time in Toddlers

You may realize that your toddler or young child may be getting too much screen time via the family's television, phone, or IPad. However, you may not have an idea of how to lessen the child's time on screens. Change doesn't take place overnight. It also doesn't happen by chance. Careful planning and adjustments need to be made to help reduce screen time, which we are hoping will increase the child's time playing with toys or engaging with other people.

Here's some tips to reduce screen time:

1. Don't automatically have screens on.
This is the biggest mistake I see parents make. The child gets up in the morning, and the tv goes on immediately (or the Ipad or phone) and stays on for the rest of the day. If your child is accustomed to having a screen on non-stop, make sure the devices are off at certain times. Having devices off in the morning, after naps, during meals, etc. sets a new routine for the child. By having times when these things are off (even if it's just for the duration of a meal at first), then you are getting your child use to times without the visual and auditory sensations that come from that device.

Screens in the vehicle are not necessary! Sure, if you are making a long trip, then you may need a screen to help your child cope with the long drive. If you are giving your child a screen for every small trip in the car, then something needs to change! There are plenty of other things you can offer your child to keep them happy in their car seat, but they may not want to accept these at first. Having music on the radio that would appeal to them can help. (I use to have the Wiggles on in my van, but it wasn't for me!) Often times both the child and the adult have gotten into these screen habits, but it's important to have times without them or activities that are screen free.

2. Keep devices out of sight and reach.
If your child truly loves their screens, then it's important to keep them out of sight and reach. Of course, you can't do this with televisions, but you can easily put phones, tablets, and dvd cases out of sight. If the child sees the tablet, they will want it. If you put it away, you can possibly delay giving it to them. Over the years, I have had to place my own child's movies out of reach in her closet or move the location of the tablet so that she wouldn't immediately go for these when she woke up.

3. Redirect and distract!
If the child indicates they want screen time, don't give in immediately. This is the second biggest mistake I see parents make. The child points to the television, and the parents put their show on. Try telling the child to wait a minute. Busy yourself with an activity if you must to show your child you can't do it immediately. Delaying the screen time will teach them that you are not giving in to demands when they want. This is an important first step!

Toddlers also respond great to redirection and distraction. Grab a toy that may give them extra sensory input such as a musical toy or play-doh or finger-painting. Do something physical with your child like throwing a ball in a box or jumping over small toys. Active play is a great distraction. Get down on the floor and play with your child! Engage them in play so they aren't left alone to think about their screens. This isn't feasible all day long, but this will be essential in the beginning if you are really trying to break a screen addiction for your child.

4. Let devices run down.
If the batteries run down in devices, don't charge them immediately. Let them be off. The child can suffer through the power outage, and it's one way to control the screen time. Just don't let them watch it while it's charging.

5. Just say no.
It's easy to suggest, but it's hard to do sometimes. It's ok to tell your child no. In fact, boundaries are great. Your toddler especially needs to understand and adapt to this word. Yes, you may have some tantrums and problems for a few days while they are adjusting, but you are the adult. You can tell them no. Playing with toys is not a punishment, but they may think it is in the beginning. You can use visuals such as a stop sign or a circle with a line through it to indicate to the child that screen time is over. You can also make a visual schedule with pictures showing the child the routine: breakfast, playtime, screen time.

If your child is spending hours watching screens, you need to make changes. At first, you may be decreasing their screen time for a few minutes over the course of a day, but you can keep building to increase their time off the screens. It will be hard at first, but in a few weeks you will thank yourself for what you did.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 

One Thing I Remind Myself in the Pit of Illness

Being Jaycee's mother has been emotionally hard at times.

With every diagnosis, life-threatening emergency, surgery, and hospital stay, there is understandably some fear for her future. When she was born, Jaycee was diagnosed with a heart defect that almost immediately put her in congestive heart failure. I was very fearful that Jaycee wouldn't make it. I worried her heart failure would worsen, and I wouldn't see the signs in my infant. I worried something would go wrong during or after her open heart surgery that would cause her life to end. I wasn't obsessed with this thought/fear, but it would pop in my head uncontrollably at times. I worried how my life would go on if hers didn't. These thoughts scared me, and her future seemed so uncertain. 

Then I had a God moment. It's one of those times when a thought came to my mind that I knew wasn't from me. In the midst of my fear and worry about Jaycee's life, this came to mind: 

Don't mourn your daughter while she is alive.

I knew what that meant. I knew I wasn't suppose to worry and fear for my daughter's life because she was after all still alive. Those thoughts were making me sad and depressed. I didn't need to focus on a possible bad outcome for her that wasn’t our current situation. I was letting those fears about her future affect my emotions. So I got it. There’s no reason to mourn a situation that isn’t one yet. This thought has stuck with me over the years. 

Before she started kindergarten, Jaycee had two open heart surgeries, two heart ablations for Wolff-Parkinson White syndrome, and had been in the ICU a few times for pneumonia. Since then, she's had a few more rocky times in the hospital with surgeries or ICU admissions. Some of these things have been hard to process. 

On the one hand, I feel she is invincible. She has survived so much despite having many health conditions that put her at risk. Jaycee seems to bounce back. She fights hard during illnesses and wins.

On the other hand, I wonder two things. How much can a little girl's body take? How many times can a child go into respiratory distress or shock or acute respiratory failure? I start to have doubts about her life.

These doubts have came at me a few times (maybe multiple times) recently because of Jaycee's two admissions into the ICU within two months and the one admission we are currently on. Old fears and thoughts come back. When they return, I remember again:

Don't mourn your daughter while she is alive.

So I take a breath. I take a second and clear my mind. I can't control the future. I don't know what lies ahead for Jaycee and her health. But, today she is here. I will be joyful for that. 

Therapy Tip: #1 Thing to Avoid for Toddlers

It's Thursday! Time for another speech therapy tip. This is the day that I share a tip or piece of advice as a pediatric speech-language pathologist and the mother of a child with special needs. Today's tip is:

The 1 Thing You Should Avoid While Your Child is Learning Language

Today, I will get on my soapbox. I've been an in-home therapist for over 10 years now, and I have certainly seen a trend developing. Electronics have long been part of the adult world for some time now. But, I see babies and toddlers being introduced to smart phones and tablets more and more often.

There are guidelines set by the American Academy of Pediatrics (AAP). Basically, there should be no screen time for children 18 months and younger. No videos, movies, games, etc. on televisions, smart phones, tablets, or other devices. None unless you are video chatting with a person.

For those 18-24 months, children are allowed some screen time as long as it's educational in nature and the parents are nearby to remark on what the child is seeing.

For preschool aged children, an hour of screen time is allowed if it's educational and parents are nearby again to teach the child how to apply what they are watching and learning.
Click here to read more about these guidelines.

I know what you are thinking. These recommendations are strict and not practical. I get it. I'm not saying you need to follow these guidelines exactly. However, too much screen time early on should be considered bad, especially if the child has a language delay. I have been in too many homes for a speech therapy session where toddlers have easy and frequent access to their parent's phone, tablet, and/or television. Many parents see these devices as a positive thing that will help their child hear and learn language, but the opposite is true.

Children learn language from people and play. Period! Children learn best from a language rich environment that happens when a person talks and plays with them. Playing with your child with actual toys is the best way to help your child with and without language delays.

The benefits of play have well been documented in research. In play, a child works on developing fine and gross motor skills. They also work on imitation, problem solving skills, imagination, creativity, language, and cause-and-effect. Sure, apps and videos can do some of these same things, but trust me when I say this: Children need to learn language from people and through play!

Screen time is no substitute for your child engaging with another person. Screens provide entertainment that is rich visually and auditory, so they are easy for children to enjoy and love. But, they can also cause children to "check out" as they focus on the screen and ignore the world around them. 

If your baby or toddler has screen time for more than an hour a day, you need to reduce it! If your child obsesses over an app or a movie, then it's time to readjust routines to break that obsessions. If your child ignores their toys or doesn't use them appropriately (throws or holds them only), then they need more time playing with another adult showing them how to play (and how it can be fun!). This is all especially true if your child is showing some delays in language or has been enrolled in speech therapy.

Devices have their place, but their place should not be in front of your toddler all day long! Making changes is hard, but this change is critical to help your child's skills grow and flourish.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

The Battle with a Tough Germ & Soda Addiction

Man, a lot of stuff can happen in a week.

On Monday Jaycee had a few coughs, so I started her extra medications and airway clearance. I also posted a piece talking about how I wanted to value my time with Jaycee even if I am in the hospital or at a doctor’s appointment all day. I didn’t know I would be setting myself up for a challenge so quickly. You can read that post here!

On Tuesday, Jaycee and my son started back to school after winter break. My husband left for Oklahoma where his job currently has him. I went back to work after time off for the holidays.

Jaycee’s numbers were all good, but I was a little nervous sending her to school on a cold day. I spoke to her teachers, and they made plans to keep her in the room all day long while continuing her medications.

She seemed fine at school. Initially at home she was fine too. She didn’t eat all her dinner, which was odd. Her hands felt cold. Fever- first red flag!

Ok so picture this: I have been home long enough to get the mail, make dinner, and eat. I was trying to clean the kitchen and help my son with his homework while Jaycee did her normal nightly treatments. Then suddenly all of life stops. The pile of dirty laundry sat in the basket, the dishes stayed in the sink, and the things that needed to be done for work that night were all just going to wait, because more red flags were coming.

Jaycee fell asleep on the couch, which was a bad sign. Recheck of the fever showed it was worse. Then her hands started to turn blue and the rest is a made dash of giving meds, packing for the hospital, alarms beeping, phone calls, and saying bye to my son. An emergency room and ambulance ride later, Jaycee ended up in the ICU.

.

January 3rd was the beginning of my mental challenge to see these days differently. You see when she gets in the hospital; I want her out. I want her to be healthy. I want to be at home with both of my kids. I also want to work. Good grief I got one day of work in after holiday break before I was calling in sick. I just want the stress of the illness over and for life to get back to normal. These are my normal thoughts. But, I am trying to view things in a new light. That is hard!

I am so impatient in the hospital as I am at the mercy of this illness creating havoc on my daughter’s body. Be calm- I told myself. It’s ok. She will make it through. Life will be normal again soon. I worked very hard to push some old thoughts down but some of them succeeded in making me anxious or angry at a situation that just cannot be changed. It just must be lived through again. I had to watch my daughter struggle for breath for days again.

On top of the illness and my husband being 6 hours away, I was doing it without caffeine. Our church does a 21 day fast the first part of the year. I gave up sodas because I know they are my addiction. I love soda! It is so fizzy and delicious! I could drink them all day long if I allowed myself to do it, so this was a great thing for me to give up. Carrots would have been much easier or broccoli. I depend heavily on sodas in the hospital. The first night of emergency rooms and chaos meant I was up for about 28 hours straight except for a few minutes of dozing off in a chair while alarms were beeping.

Oh soda, how I wanted you! I never intended to give up soda during a hospital admission, and I was ready to bail on this fast on day 2 at 11 pm in the emergency room.

It became too much! God, first another time in ICU where I promised not to let my usual thoughts bother me and all without the delicious goodness of soda. But God spoke to my heart that I could do it. I needed to ignore that voice inside my head that said I NEEDED soda to get through the time in the hospital or I NEEDED caffeine to get me through the long days. It is true I have confessed these very things with my mouth.

There were a few moments when I wanted to run to the vending machine and binge on Mt Dew but I stopped myself. This was less about completing a fast and more about God showing me that I can cope in these situations without some of the coping mechanisms I have been using for years.

I have realized some things about myself during this hospital stay. Not all of my thoughts are true. (I can survive without a soda.) Changing thought patterns, especially those established under stress are difficult, but I can do it. I have my own work to do when Jaycee is sick in the hospital. This past week was the first time in a long time that I come to really believe that I can change my thoughts. I can’t change anything about Jaycee’s heath problems, but I can control my response to them. Hopefully, I will keep handling things better.

Therapy Tip: 1st Words Activity

It's Therapy Thursday! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and the mother of a child with special needs. Today's tip is:

An Easy 1st Words Activity

If you read my blog, you'll know I have spent over 10 years working in my state's birth-3 program. I have spent hours and hours treating toddlers with language delays. Some children that start therapy with me have absolutely no words. Others may have just a word or two. For these children, I have a few different activities I like to do to encourage some basic first words. Today, I'm sharing one of my favorite activities.

I refer to this as my flashcard and real object match up.

Some therapists are very anti-flashcards. I don't mind them, but I don't necessarily use them every week either. They, like everything else, have their place.

Flashcards are a great bridge for toddlers who won't sit for short books. Books are essential for teaching vocabulary and expanding a child's attention span. Some children don't have any kind of attention for books, but they may sit briefly for flashcards. The flashcards allow the child to focus on the one word too, which is great for early language learners.

To make this activity, I looked through some of my many sets of flashcards that I purchased at local stores (Dollar Store, Walmart). Then I tried to think about real objects I had that I could pair with certain flashcards. 

As you see above in the picture, ball, shoe, and cup were 3 of the 10 cards I chose. These three were chosen because they are common words for toddlers. The rest of the words I chose were based off of what objects I could match up and what sort of words or sounds I could elicit from children. I used flower so I could target a sound effect (ah-choo). Bug is another word I chose because I could target words like yuck and ew in addition to the word bug. 

Whenever you have collected your flashcards and real objects, place them all in a bag to hold. Present your child with a flashcard. Draw their attention to the picture as you say the word. A few seconds later, present the real object while saying the word again. I will say the word while pointing to the real object and then the card. Then present the next flashcard and object taking cues from the child. Some toddlers need to move quickly through each pairing because their attention is short. Others will spend a good 30 seconds focusing on each word pair. The child will let you know how slow or fast to go. Some children may not be able to get through all 10 pairings you made, but hopefully over time, they will.  

If you are teaching sign language to your toddler, then model the sign as you present the pictures and the objects too. This is a great way to teach a few signs one at a time! 

This is a simple activity that is great for children just beginning to learn to speak, and you probably have most of the items you need to make it happen in your home. 

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

I Don't want to Waste the Days This Year

The beginning of a new year offers hope and possibilities.

Like everyone else, I dream big dreams at the beginning of the year. I declare I'll lose weight and stop stressing over things. Then my daughter Jaycee goes into the hospital, and I stress eat. Yep, I break two of my rules simultaneously.

At some point every year, life gets chaotic, and things just seem to go into survival mode for weeks. Then it always happens. I realize those goals I had in my head for the year just aren't going to happen. I quit or resign or maybe surrender.

As I have thought over the past few weeks about what I should focus on for 2018, I have been torn. This life as a parent of a child with complex medical needs can make life unpredictable. I'm tired of making the same resolutions and coming up short. Therefore, I've been reflecting in prayer on what I can actually change in 2018.

Then, the answer came to me. 

I realized that I am quick to declare some days as wasted. It's those days that I spend all day driving my daughter to the hospital hours from my home, sit an unfair amount of time in the waiting room, recite my daughter's medications to the nurse, and then rejoice when the doctor finally makes his or her appearance for a few minutes. Nothing at home gets done. I don't seem to accomplish much with these specialty appointments. At night, I will literally tell my husband, "Today was a complete waste of time."

I have other wasted days too. These are the ones that I spend in the hospital when my daughter is admitted. Don't get me wrong; I want to be with my daughter when she's in the hospital. But there's a part of me that gets frustrated that I can't do anything in life that needs done. Responsibilities at home are dropped suddenly. I can't work at my job. Anything in my schedule gets canceled. It sort of feels like that time in the hospital steals precious time and days from all of us. They feel wasted. 

I went through my calendar for 2017 and found roughly 36 days that were either full days of driving to and from specialty appointments at a hospital hours from home or sitting helplessly in a hospital next to Jaycee during an illness or for a surgery. If I consider all of those days "wasted," then I lost over a month of our year. Yikes!

This is my challenge for the year. I don't want to consider any day wasted.

The thing is that I'm still going to have days driving Jaycee around to the doctor this year. There is also a possibility that I will sit in a hospital with my sick child. Yet, I'll remember something important. These days aren't wasted. In fact, they are extremely important.

I am caring for my child. I am doing something worthwhile. I will see these days for what they are: I'm doing my job as a mother. That's not a wasted day! That's one of my purposes in life. With that in mind, I bet I'll have a better attitude and can settle my busy mind down to focus on the important work that I'm doing that day. Because all of it is important!

After all, singing Disney songs with my daughter on the way to the doctor isn't a wasted activity. I just have to look at the huge smile on her face to know that!

So here's to enjoying and appreciating every day in 2018 with NO days wasted!