Tuesday, January 16, 2018

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. 
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Thursday, January 11, 2018

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.
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Monday, January 8, 2018

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.
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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.
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Thursday, January 4, 2018

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.
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Monday, January 1, 2018

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!
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Thursday, December 28, 2017

Best Therapy Tips of 2017

Nearly every Thursday, I have been sharing a speech therapy tip here based on my work as a pediatric speech-language pathologist. I've spent years now working with infants and toddlers in my state's birth to three program. I've discovered some easy ways to promote language that are worth sharing. I've also come across some of the same questions from parents over the years too. I've used my blog on Thursdays to address some of these things and spread some of my knowledge.

Here's the top 3 Therapy Tip posts of 2017:

#1
Therapy Tip: I'm Worried About my Child's Language
In this post, I give red flags for 1 & 2 year olds that may signal the need for a speech-language evaluation. I also discuss the pros and cons of the 'wait and see' approach when you aren't quite convinced that your child needs testing.


#2
Therapy Tip: Fun with Magnets!
This post tells readers how you can target basic language and articulation goals using magnets.


#3
Therapy Tip: Winter Sensory Bin
If you need a simple idea for a sensory bin in the winter season, this is a good post for you.



Bonus:
This one didn't make the top 3, but this was one of my personal favorites:
Therapy Tip: When to Start Speech Therapy for Children with Down syndrome?
In this post, I share my personal opinion on when a baby or toddler with Down syndrome should receive speech therapy.


Thanks for reading my therapy tips this year!!
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Tuesday, December 26, 2017

2017's Best Read

Hope you had a very Merry Christmas! 2017 is nearing its end. It's hard to believe it sometimes. It's been a busy year here on the blog, so I'm taking this week to review the best read posts.

First, let's talk about guest posts. I've been blessed to share some work by other fellow writers and bloggers on my site this year. I feel honored that these writers allowed me to share their work on here.

Here are the top 3 posts written by guests this year:


#1
Help that Hurts by Dana Hemminger

I loved this post by Dana which talked about misguided help for parents of children with Down syndrome. She shares about assistance from others that actually helps instead of help that really hurts.

#2
Meet Roshni: No Limits with Down syndrome by Sruthi
This guest post tells about an amazing young woman with Down syndrome named Roshni. If you missed it, take a few minutes to read about her life.


#3
Siblings, Down syndrome, & a Hole in the Ceiling by Geraldine Renton
Geraldine shared a funny story about growing up with her brother with Down syndrome. I love hearing a sibling's perspective.


Now, it's time for me. This year I've continued to share about my life raising my daughter with special and medical needs as well as random thoughts about life, faith, and parenting. Here's the top 3 blog posts from the year written by me:

#1
What is a Woman Entitled to? Thoughts on pregnancy, babies, and abortions
There have been many startling articles and statistics on Down syndrome abortions recently, and this post grew from that.

#2
I Have Nothing Cute to Say
This is a fairly recent post of mine sharing thoughts after a rough hospital admission for Jaycee. Apparently, people like it when I have nothing cute to say.

#3
When People Say My Daughter's Down syndrome Needs Healed
At the core of this post is the question: Is there room for disability in the Christian church?


This is my most popular post on another site hosted by Snappin' Ministries, which I have written for each month this year:
When Spring Break Plans Aren't Glorious
We had no fun vacation planned over spring break, and an attitude problem was a possibility for me. Hence, this post about my real, real life.


Thanks so much for reading and visiting my blog. I appreciate my readers, and hope to welcome you back in 2018. I'll have some exciting news to share with you really soon in 2018 too!!!!

For videos, pictures, links, and more...visit my Facebook page!
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