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:

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.

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

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.

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:

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.

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.

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:

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.

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.

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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Thursday, December 21, 2017

Therapy Tip: Felt Christmas Tree

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

The Felt Christmas Tree

I like doing simple activities in therapy that families can replicate at home. If a project is too complicated, a family will most likely not do it at home. They will not want to run to several stores to try to find several materials to create a great activity. They have enough to do already. Simple is best!

To make your own felt Christmas tree, all you need is felt material. I purchased a small 10 piece felt package from Wal-Mart to make mine. I didn't use a pattern, which explains why my tree isn't "perfect." I just cut out all the pieces you see above (tree, star, circles that I called lights, and squares for presents). After all your cutting is complete, you are ready to work on some language skills. 

Here are some things I target with toddlers/two year olds using this tree:
-Spatial concepts/following directions: Try giving your child these directions to check their understanding of spatial concepts: Put the star at the top of the tree. Put the presents under the tree. Put this light in the middle of the tree. 

-Colors: I made the circles/lights different colors so I could work on pink, orange, yellow, and purple. You can hold up two different lights and have the child get a certain color. (Get the pink one). This works on color identification. If that's too easy, you can hold up two lights and ask the child which one they want. This works on color naming

-Saying family names: Tell the child the presents are for someone in the family. "This one is for (child's name). This one is for mommy." To change it up, you can ask the child who they think a present is for. 

-Shapes: The star, squares, and circles can also be discussed for children who are ready to work on shapes as well. You can ask them to find a circle/square/star after it is all decorated. 

-Phrases: Hold all of the pieces for the tree in your possession. Make the child say what he/she wants in order to receive the pieces. "I want the star. More light. I want light please." 

Have fun decorating your tree and building your child's language skills!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 
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Tuesday, December 19, 2017

Joy to the...Special Caregivers

It's the most wonderful time of the year.

Well, it's suppose to be.

My attitude lately has, frankly, sucked. I don't want to sound like a broken record on this blog, but a hospital stay impacts a family for weeks afterward. Once Jaycee came home, I took over her intense care, which included nebulizer and vest therapy treatments every 6 hours around-the-clock for almost a week. Her oxygen saturation monitor beeped and alarmed multiple times a night for that first week home too. Basically, the tiredness I felt when I arrived home from the hospital with Jaycee grew exponentially.

Besides the zombie like state I was in, I didn't have time to process the whole situation until we were home when I had a second to think. This whole illness began with Jaycee turning blue at home. This has happened now more times than I can count. Years ago, Jaycee responded to her emergency medications, and her breathing would stabilize. This time, like the past few blue moments, the emergency medications were not completely working and she was ripping off her oxygen as I was trying to put it on. Can you say stressful?

I haven't even told you how my child hit and kicked me and the nurses in the hospital as she fought off the necessary activities that needed to be done while there. That was exhausting physically and emotionally. She was scared, so I wasn't upset with her. But, her resistance to touch continued when we came home, and I needed to touch her for one of her temporary but extremely necessary medications. I dreaded the two times a day I had to approach her with these medications at home because she would not calm down. Yep, that first week post the hospital was hard.

The combination of lack of sleep and the stress made for my less than desirable mood for the last few weeks. This season usually brings me joy. I love shopping for others, looking at Christmas lights, and the season of giving and kindness. I have had moments of happiness, but there's been lots of sadness, tears, and frustration with things that have happened lately.

Sometimes, it is hard to be a person of faith and stay joyful in times of trouble.
You want God to rescue you, and it's hard when it doesn't happen. It's harder when an illness (or problem) happens again and again. You want to make sense of something and find a way to have hope that things will be better.

There's something important that I need to keep reminding myself.

Heaven is perfect. The Earth is not.
Heaven is where my daughter will be free from sickness. Heaven is where I won't be stressing about her numbers on a monitor. Heaven is where we'll have perfect peace.

On Earth is where we are though. I want many years on Earth with my daughter too- don't get me wrong. But, the Earth is full of things that God neither wanted or planned for His people. I forget this sometimes. I forget that things aren't always going to perfect on this imperfect planet.

That's why the Lord's prayer is so powerful in moments when you feel God isn't in your situation. Your kingdom come. Your will be done on earth as it is in heaven.

I'll keep reminding myself to pray. I'll keep telling myself that I can have hope for a better future for our family. I'll tell myself that things were hard for a bit, but those tough times don't have to ruin future times that bring opportunities for joy.

So my fellow moms of children with medical or developmental diagnoses, I hope that during this Christmas season, you are finding joy. I hope you can shut out the chaos in your life right now and find peace. I hope that recent trials aren't souring your mood, and you can enjoy the fun times with your family today. I'm certainly going to try to do this! A sugar cookie or two may just help. 😊

In this manner, therefore, pray:
Our Father in heaven,
Hallowed be Your name.
10 Your kingdom come.
Your will be done
On earth as it is in heaven.
11 Give us this day our daily bread.
12 And forgive us our debts,
As we forgive our debtors.
13 And do not lead us into temptation,
But deliver us from the evil one.
For Yours is the kingdom and the power and the glory forever. Amen
Matthew 6

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Thursday, December 14, 2017

Therapy Tip: Building Language with Your Christmas Tree

It's Therapy Thursday!

You know the drill...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:

4 Ways to Build Language Using your Christmas Tree

I love incorporating language goals into natural things around the home during the holidays. If you have a Christmas tree in your home, then this tip will be of interest to you. Here are 4 things you can do with your early language learner (ages 2-4 depending on the child's abilities) utilizing your family's Christmas tree.

1. Colors:
If you have different colored ornaments, decorations, or lights, you can target colors with your child. You can point to a particular color and ask the child to find the same color on the tree. ("Here's a blue light. Can you find one?") You can ask your child to point to a specific color on the tree. ("Find a green light.") Finally, you can simply talk about the different colored items on the tree.

2. Spatial Concepts:
Use items on the tree to describe where they are. Use words like on top, middle, on, under to describe the location of the items. The presents are UNDER the tree. The star is ON TOP of the tree. The lights are all AROUND the tree. The tractor ornament is in the MIDDLE of the tree. To make it harder, ask your child to tell you where specific things are to see if they will use these spatial words too.

3. Vocabulary:
If you have a lot of different ornaments on the tree, use them to build vocabulary. My tree is full of Disney characters, super heroes, holiday items like a candy cane, and more. All of these different types of ornaments can be located to build vocabulary ("Can you find the fire truck ornament?"). But, you can also point out things to the child and discuss them ("Here's a candy cane ornament. It's red and white.")

4. Answering Questions:
Ask your child questions about things on or around the tree. Think about questions you can ask that start with where, who, what, why. Where's the star? What is this ornament? What is your favorite one? If your child is saying simple sentences, ask harder questions such as: How does the ornament stay on the tree? Why do you like this ornament? How many lights do you think are on the tree?

Now go enjoy some therapy time around your tree!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 
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Tuesday, December 12, 2017

Hidden Costs of a Hospital Stay

Most people know that hospital admissions with doctors, tests, and the emergency room are all expensive. Even if you have health insurance, there are deductibles and co-pays that can add up quickly. But there are other costs involved with a hospital admission that most people aren't aware of.

My 11 year old daughter has been in the hospital for an illness or surgery every year since she was born. Needless to say, my husband and I have spent plenty of time in the hospital with her. We have learned how expensive everything can be when a loved one is in the hospital. Here's a few things:

1. Food
You may think hospital food would be affordable. Well, that hasn't been the case for the hospitals we frequent. Meals that we purchase in the hospital cafeteria are anywhere from $5 (which will be a small meal with no drink)-$10. That may not seem like much, but multiple that amount for 3 meals a day for X number of days.

Example: $8 meal x 3 meals a day for 10 days (the length of our last stay)= $240
Say what?! If my husband is at the hospital too, then the cost doubles. Oh and sometimes my son visits and eats with us. Yep, that adds up.

The hospital we have stayed at the most with our daughter does offer parent meal trays for $8. You do get more food with this option, but it's not the best tasting since it's essentially the same food the patients can have. It's not necessarily a dirt cheap option at $8/meal. Our hospital offers free meal vouchers for some parents, but we don't qualify. These are handed out to families on state Medicaid insurance. Good for them, but not for us.

We have found that sometimes it's cheaper to have a pizza delivered or go to a nearby restaurant if our daughter is doing well enough for one of us to leave to get the food. Sometimes to save money, I'll purchase a single pop tart out of a vending machine for $1 and drink water for a cheap breakfast. When Jaycee has been in for weeks, we bought some microwavable food (soups, oatmeal cups) or things like chips to have and eat instead of purchasing these things in the hospital.

FYI-We live 120 miles from the hospital, so we can't just go home for a meal. When Jaycee is in the hospital, at least one of us is always there.

2. Lodging
Our hospital allows one parent to stay in the room with Jaycee. Another parent can sleep in the designated parent lounges, which are never completely dark for security and safety reasons. This allows both of us to stay near our daughter, which is what we prefer when she's in the ICU. This is the cheapest option for lodging since it's free. Sometimes, we need a night away from the hospital because sleep is hard to get with alarms going off and the stress of the situation. If our son wants to stay a day or two with us, then at least one of us has to leave the hospital to stay with him nearby too.

Ronald McDonald homes are in the city of our hospital, but these are usually full with waiting lists. We have only stayed there once when Jaycee was first born. Hotels become our next and only option since we live so far away. There are several hotels that offer discounts for patients of a nearby hospital. The discounts vary by hotel. This past admission for my daughter, we needed a hotel room for 2 nights when our son stayed with us during her 10 day stay. The cheapest night we stayed was $126. They aren't giving these rooms away, but it was $30-40 less than what was listed on the website. But you know I'm going to hit the free breakfast at the hotel to make myself feel a little better about the expense.

3. Gas
This is the least expensive part for us, but it's worth mentioning. When Jaycee is in the hospital, I usually stay at the hospital the entire time. My husband will sometimes travel home to pick up things we need or pay bills or bring our son for a visit. A trip or two home means a tank or two of gas. What's another $50?

4. Time Missed from Work
This really isn't an expense but it's a loss. My husband and I have jobs that have no paid time off. If we aren't at work, we aren't going to get paid. We both can't help but think of this fact as we are sitting in her hospital room in the ICU wondering how many days this illness will wreck havoc on her body. If you are fortunate enough to have paid time off or sick days, great for you! But, we aren't those people.

This list isn't made for you to feel bad for me. It's to enlighten those who haven't experienced what we have experienced. It's also written to show that there are layers and layers of stress in these situations.

If you have a friend or family member in the hospital, you can keep these things in mind. Instead of sending balloons or flowers, see if the hospital has gift cards available. We have a couple of people who frequently send us gift cards that we can use in the hospital gift shop or the cafeteria. This is a nice and useful option. If you are going to visit someone in the hospital, ask if you can bring some snacks. (Ask first because there may be rules. We can't keep food in Jaycee's ICU room, but we can keep it in our vehicle.) Gas cards and food cards are also great gifts even for when the family returns home since I'm guessing they might be a bit tired. Anything is helpful, because, as you now know, time in the hospital comes with lots of costs.
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Thursday, December 7, 2017

Therapy Tip: Gift Guide for Early Speech-Language Learners

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

Christmas Shopping? Early Speech-Language Learners Gift Guide

Christmas will be here in a few weeks. Oh the joy!!
About this time of year, parents often ask me about appropriate Christmas presents for their toddler who I am treating in speech therapy. Everyone wants their toy to be useful and help their child develop skills they are building in therapy.

Today, I am offering my ideas for gifts in case there are parents, friends, or grandparents who are buying toys for a child with speech or language delays and need help. I am hesitant to place an age on this gift guide because an older child with significant language delays may benefit from things on this post. Therefore, this is written for those children who may be working on saying single words up to 3-5 word phrases. 
In general, almost any toy can be used to build language (i.e. increase vocabulary or encourage words/phrases/sentences). When I am looking for a toy, I go by this rule of thumb in general: The more basic the toy, the better.
Toys that make noise or sounds or are motorized USUALLY result in less talking since the child is busy pushing buttons or watching the toy. So, I try to avoid most noise making toys or moving toys for children that have very little language. These types of toys have their uses, but if you are specifically looking for something that will help promote verbal speech, look for toys that do not have the extra bells and whistles. I want the child to make the noise and the sound effect, not the toy.
Another important thing to remember when purchasing a toy is the child's developmental age. The development age describes where the child is functioning versus their chronological age. Many toys have suggested ages on the box. If you have a child with large delays, these ages will not match up for what they child may need. For example, a box may say 24 months. Now, if you have a child with Down syndrome who is 24 months, their developmental age may be closer to 12 if they have just started walking. So choosing toys with a 12-18 month age listed on a toy's box may be more appropriate than the one with 24 month age listed.

Here's some more specific ideas: 

Toys for children developing vocabulary, working on phrases, or using verbal speech: 
-Any type of food related toy can work on basic words like eat/drink and naming foods. There are many pretend food sets and play kitchens that spark imagination and allow good vocabulary to be developed. 

-Any board book or flashcard set can be used to promote language. I especially love books and cards that have real photographs versus cartoon drawn pictures. If the child loves a particular character on tv, books with those familiar characters are often good to spark language or an interest in books in general. 
My First Words Available Here

I Can, Can You? Available Here

-Baby doll sets with a few accessories can be great for early language. A baby doll with a bottle, brush, or diaper can target action words (brush, drink, eat) and other basic words. Baby doll play also allows moments for imitation. For example, you can pat the doll's back and see if the child imitates you. 

-Car sets with a garage or ramp are great too. This allows you to work on action words (go, stop), descriptive words (fast, slow, green), and spatial/location words (up, down, in, out). 

-Non-motorized train sets are great too! Trains have been very popular with young toddlers and preschoolers, which is wonderful since they can target many of the same words as the car sets. Trains also give an opportunity to work on sound effects (choo-choo). I do not like the battery powered trains as young children in therapy tend to watch the train move rather than play with the train and engage with it.  

-Animal sets/toys in any form is another good gift. Basically, any toy that has animals on it can be used to work on naming animals or repeating animal sounds. Puzzles, puppets, small figures, books, etc. are all great to target this early developing skills. 

-In general, I like the Melissa & Doug wooden toys. There are a variety of these products that can be used to work on action words, spatial concepts (in/out), and basic vocabulary (go, up, more). Melissa and Doug toys are durable and cover a range of different topics. You can't go wrong with a Melissa and Doug toy. 
A puzzle made by Melissa & Doug. 

-Of course, I love bubbles. With bubbles, you can work on words like pop, more, dip, bubble, my turn, your turn. 

For children working on articulation/speech sound development:

-I love the Leap Frog Letter Factory DVD for teaching letters & sounds. I have had kids really pick up on sounds watching this DVD.

-Many Leap Frog toys in general are good for teaching letter/sound connections. The sooner the child with articulation errors can get this, the better off they will be for school.

-Bath foam letters allow for a way to work on producing the sounds of letters during bath time. I also like to squirt water on glass doors and stick the letters to the glass to use the foam letters in a different way.

-Bath paints or markers can be used to write words or letters with the sound your child is working on. You could also draw pictures of things with the sound your child is working on. For example, if your child is working on /b/, then you can draw a ball, boy, or boat to practice this sound.

-Alphabet puzzles allow for the sound/letter connection and a chance to practice your child's difficult sounds in isolation by themselves.

-Letter magnets again allow for the sound/letter connection or sound practice. Besides sticking them on a refrigerator, you can buy a small cookie sheet to stick the magnets on.

-Alphabet stamps or alphabet stickers again allow for sound play and letter/sound connections in a variety of ways.

Hope this gives you some ideas for Christmas. Remember, you can always ask your child's therapist if you need more specific ideas. Happy shopping! 

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 
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Tuesday, December 5, 2017

I Have Nothing Cute to Say

The previous few weeks have been hard.

I'm a fairly positive person, but the past hospital admission with Jaycee has made things tough. (If you missed my last post, you can read more about the hospital stay here.) Seven days of watching your child endure pain, fight for breath, and lay in a bed in the ICU will wear on you as a parent. Then add three more days of care in the pulmonary unit where your child fights diaper changers with all her might, struggles to keep food down, and looks so sad to be in the hospital. It's hard in so many ways. I wish my daughter's health wasn't so fragile.

Jaycee sleeping with her Beast doll on continuous bi-pap in ICU
As I said in my last post, we are no strangers to the hospital or ICU. The familiarity with all of it is exhausting. I sat in the hospital and thought, "Not again! This can't be happening again!" But it was. We were warned back in 2013 that once you need a ventilator during an illness, you tend to fall harder and need more support for relatively common illnesses later on. Jaycee was almost expected to become a repeat ICU patient and that has been what she has become. Jaycee has been in the ICU every year since then for a cold virus or pneumonia or some other lung issue.

My first thought when we arrived home was, "How many times can this happen to my daughter? Is her life and ours ever going to have normalcy without hospitals?" Obviously, no one at the hospital believes it will be. "See ya next time," some of them said to us as we walked out the door. Hope not, but it has been the case for some time now.

This year alone I have accompanied Jaycee on an ambulance three times while she was transported to a Children's hospital for care. Twice the transports were for respiratory illnesses that resulted in hospital admissions. One was for the hemorrhage at home after her oral-pharyngeal surgery. That surgery, by the way, was excruciating for Jaycee for over a month. This year has had its ups and downs for sure.

As a writer, I try to share our life stories as well as how I cope in these situations. But this week, I can't find the silver lining. I have no cute story that's inspirational. I have no moment of revelation that happened in the hospital. My power of positivity is not here. I could tell you how Santa visited her in the ICU and how Jaycee has watched the video a dozen times since with happiness. But, I could also tell you it really stunk to hold Jaycee down to be suctioned several times. The bad outweighed the good as far as I can tell.

If there's something positive to say, it's this: I know there is still a God. I know God is working in my daughter someway and somehow because she is still here even though she has several health conditions that don't put things in her favor. And, I certainly love her dearly.

That's why all of this hurts so much sometimes. It hurts to see her in pain and sick and looking at me with those eyes like I should be protecting her from the nurses who must stick and poke and prod. I hate it for her, because I love her so much. Even when I felt like running out of her room when she was in the hospital because I didn't want to watch her in pain and struggle, I stayed. I held her hand. I put on her favorite movie.

I dug down deep in those moments and found something cute to say to her.
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Wednesday, November 29, 2017

Fighting the Old Demons

Where has the past week gone?

It started last week on Wednesday when I put a "well" Jaycee to bed. An hour later, she was up crying and turning blue. When the home interventions were obviously not helping we rushed her to the emergency room. I rang in Thanksgiving in the emergency room with my husband and hospital staff. After tests and monitoring, Jaycee was determined to have pneumonia which always is hard on her little body due to her asthma, lung cyst, obstructive sleep apnea, and history of atelectasis. By this time, Jaycee was on oxygen and waiting for the Children's hospital to send their ambulance.

Fast forward... Jaycee landed in the Pediatric Intensive Care Unit because her oxygen requirement was so great. Her blood pressure was very low and a couple of liters of fluid were pushed in an attempt to keep it up.  Her vitals were all low or high and there was some real concern she was in shock.

I hate the ICU. I mean no one loves it, but it does a number on me emotionally. But I know that Jaycee hates it much more than me. I have a short health history I keep of Jaycee in my purse for emergencies like this, but it is lacking some details. I can say that this illness makes at least 8 admissions into the ICU for some sort of respiratory problem.

The positives about being there a few times is that you learn the ropes. You know what alarms and beeps to be worried about and when they are nothing to be concerned about. You learn your child's vital signs and know when to be worried and when to be very very worried. You know what the parameters are for needing more support with breathing and less. This knowledge makes some things easier because the first time Jaycee was in ICU back in 2011 for pneumonia, I was completely freaked out just because she was in there. I sat and cried and worried and she recovered just fine. Now, I know when it is truly a time to freak out.

Since 2011, she has been on a ventilator twice, spent both weeks and days in ICU, been on bi-pap support continuously, and been near death once while battling septic shock.  I have seen my daughter with art lines, central lines, picc lines, feeding tubes, cathed, suctioned, and medically drugged. I have felt fear like never before in that place.

Every time we leave ICU, there is a part of me that goes on with life. There is a small part of me that wants to never think about or deal with those demons we faced in that beautiful and terrifying place.

It is a place of miracles and victories and relief for families. It is also a place where some spend their   final moments. These souls shake the nerves of everyone around because you want to believe that no child ever dies and everyone has a happy ending. But some don't... And after seeing that play out for other families that scenario is trapped in a far corner of my mind that tries to come forward during Jaycee's distresses. I am aware of that possibility but I spend most of her illnesses thinking my daughter is invincible. I fear that fate that some have met because I know my child's health isn't perfect.

When Jaycee is in ICU, old demons resurface. When I walk past certain rooms that Jaycee once occupied and old memories flood back. The ones I try to forget. The ones that involve rapid responses and machines and fast paced intervention. I see doctors who broke bad news to me and prepared me for the worst. They spark memories too.

The times in the ICU have shaped me into the mother and person that I am. I have seen and heard things no one wants to be part of. I try to forget all the bad and focus on the good....that Jaycee made it. That she lived through it. That she got her miracle and healing. And I TRY not to let those ICU experiences affect our life once we leave. Sometimes they resurface in nightmares or in body tension on routine appointments in the hospital. They are there even if I don't want to admit it.

But then it all comes back. As we stepped into that all familiar unit last week, I wondered what hell Jaycee was in store for this admission. I worked hard to ignore the chaos around us, the memories trying to torment me with worry, and the fear this place brings. I fought a different battle than my daughter. Pneumonia was her enemy. Fear was mine. Hers will have a beginning and ending, but I fear mine never really ends, just hiding below out of my mind's forefront.

Tonight, I am more relaxed though. Her miracle came again. We left ICU today and moved down the hall to the pulmonary wing. Her recovery will continue for awhile but the danger is behind us. Her weak lungs found strength another time. Hopefully forever....

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Wednesday, November 22, 2017

From Thanksgiving Past....

Looking for some reads to get in the Thanksgiving mood?

Here are some posts of mine on the topic of Thanksgiving. Take a read if you would, and have a Happy Thanksgiving!

When Trials Make You Feel Ungrateful

What My Daughter with Down syndrome is Thankful For

Irritating Things I'm Grateful For

Finding Thanks

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Tuesday, November 21, 2017

Thankful, Grateful: The People who Help Us

I'm not completely independent. I can't raise my children all on my own all the time. I wish I could, but life is complicated and messy sometimes.

I don't need a house keeper, though that would be nice. I don't need a babysitter for date nights, since those are virtually nonexistent. No, no- the help I need is out of the ordinary due to my daughter's medical and special needs. There are many people in our lives that fill holes and jobs that I simply cannot do all the time.

I'm certainly grateful this Thanksgiving for:

Jaycee's Grandparents
Jaycee's grandpas and grandma are always quick to jump in and help our family. My mom has rode along on numerous doctors' appointments with Jaycee and I, so I would have company for the hours of driving. My mom has watched my daughter when she was home sick so I could work which has required her to learn how to do her vest therapy, use her monitor, and administer different medications. She has been the only brave soul who has kept Jaycee overnight so I could have a break.

Countless times over the past 11 years, Jaycee has gotten sick in the middle of the night or had an urgent need. Countless times, we have called Jaycee's grandparents with this upsetting news in order to have them meet us at the hospital or take our son while we transport Jaycee to the hospital. They have adjusted schedules, work, and their lives to help us during those crazy times. They have ran to the pharmacy to get medicines when I couldn't leave the house with Jaycee. They have brought us meals when Jaycee was sick requiring medications round-the-clock. They have helped us a dozen different ways over the years and for that, we're grateful.

Uncle Grumpy and Aunt Steph
My sister-in-law, Stephanie, and my brother Josh (AKA Uncle Grumpy...Jaycee called him this a few years ago and I still refer to him as that) have also helped us multiple times over the years. They have helped with my son's care while Jaycee was in the hospital or at a doctor's appointment. They have picked Elijah up from school, finished his homework with him, kept him overnight, and taken care of him when needed- sometimes with little notice. We're grateful to have people we can trust to take care of our son when we're not able to do it.

Jaycee's Individual Aide
I can count the number of non-family members who have watched Jaycee over her lifetime on one hand. Her needs are great, and only a responsible, patient person can be trusted to care for Jaycee the way she needs cared for. As you can imagine, it's a really bizarre feeling as a parent for their child to need an individual aide at school but you have no say in who that person is. When Jaycee was going to get a new school aide about 5 years ago, I was a little worried. I wouldn't know this person, who would suddenly be spending hours a day with my child.
Fortunately, Ms. Shannon and Jaycee have gotten along just fine over the past few years. I have seen and heard many horror stories when it comes to aides. I feel very blessed that I can send Jaycee to school each day knowing that she is in good hands with her aide. I know she cares about Jaycee, and I have no fears sending her off to school. I'm so thankful we have a great aide for Jaycee. 

Jaycee's Teachers
Jaycee has been in the same classroom from Kindergarten to 5th grade presently. When your child spends years with the same teacher, you pray you'll like them. Otherwise, it will be miserable for everyone involved. Like your child's individual aide, you hope the teacher is patient and understanding with your child with limited verbal skills and many, many needs. We have gotten to know her classroom teacher and aide well over the years. Ms. Amy and Mrs. Tolley have been wonderful with Jaycee. I believe they treat her like she was one of their own children. They know when to be stern and when Jaycee needs a break. Her teachers have sought my input when things aren't going right and listen to me when I have something to share. Teachers like this are a blessing, and I'm thankful she has caring people who treat her well at school.

Cousin Gabby
Jaycee has 7 wonderful cousins, but there is one that is her definite favorite. A few years ago, cousin Gabby became Jaycee's delight. Gabby has accepted the fact that Jaycee is going to want to hug her, kiss her, mess with her hair, go in her bedroom, and take a few dozen pictures with her every time they are together. Gabby has learned Jaycee's gestures, signs, and words so she can communicate with her. When Jaycee calls Gabby on FaceTime, Gabby knows how to entertain Jaycee. Jaycee just loves her cousin's attention. She asks for Gabby's whereabouts multiple times a week. Cousin Gabby makes Jaycee happy and that makes me happy. 

This Thanksgiving, I'm grateful for all the people who play an important role in caring for my children and supporting our family. They make our lives work, and I'm thankful for all of them. I hope all of you have people like that in your lives. 
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Thursday, November 16, 2017

Therapy Tip: A New Use for Bath Foam Toys

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

Using Bath Foam Toys for Language Building

Bath foam toys are often used with young children to make bath time more fun. These foam toys, like the 16 pack pictured above available in stores or online, are relatively inexpensive and easy to find. 

So here's what to do. Take the bath foams you have around the house (or purchase them). Grab a little water spray bottle like this one: 
Then head to your nearest glass door.

Use the spray bottle to wet a small area on the glass door, then place one of the foam pieces in wetted area. Tada! They stick! The young kids I have tried this with have really enjoyed it.

While you are playing with your child, here are some words and concepts that are targeted:
-Vocabulary Simply name the picture on the foam.
-Wet/dry Have the child touch the wet spot to really feel what wet means. Use a towel to make the glass dry again.
-My turn/your turn Take turns wetting the door to work on turn taking and saying 'my turn.'
-Up/high/low/down Use the child's shortness to your advantage! Have them say "up" before picking them up and helping them reach the top of the glass door to place a foam. Only do one foam at a time like this so you have many opportunities for them to say "up" (or whatever word or phrase your child needs to work on). Talk about the placement of the foams on the door using the words high or low.
-If you only have alphabet letters, you can work on:
      *individual speech sound imitation if your child has a speech sound disorder. (Example- Show the child the letter b, and model /b/. Have them repeat it.)
      *saying the child's name by spelling out the name with the letters.
      *naming letters of the alphabet for preschool age children.

Simple, easy, and fun! This is a great way to use a familiar item in a new way to build language. Give it a try!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Tuesday, November 14, 2017

Love is...Consenting to a Surgery

The monitor beeps as numbers are displayed. 
There's constant scurrying outside the doors of the room.
My eyes strain to stay open after a grueling night. 
A whimper comes from my daughter's mouth. 

I take her hand, kiss her forehead, and say, "I love you, Jaycee." 

She says immediately, "Uh-uh!" (As in No!)

"Yes, I do. Mama loves you," I say with conviction. 

"Uh-uh," she retorts. 

I felt broken. 
She's miserable, and she blames me. 
She's partially correct. I consented to all this madness. My husband and I both did. 
Like many people with Down syndrome, obstructive sleep apnea (OSA) has been an issue for Jaycee since she was 3 years old. Having her tonsils and adenoids removed shortly after her OSA was diagnosed did not "fix" her apnea. Thus, treatment with c-pap started on my skinny, little 3 year old child. 

Over the years, her OSA has gotten worse. Some of it can be blamed on her weight gain (which has definitely been impacted by her health issues, hospital admissions, and prednisone use several times a year), but not all of it can. 

The first few years Jaycee had sleep studies, I prayed we would see improvements, and I prayed with confidence. Every time in the past 8 years of studies, it showed she was getting worse and needed higher pressures to force air in to keep her airway open as she slept. Eventually, she was switched to a bi-pap and on high levels of pressure. (19/15 with a rate of 15) I was told her pressures were so high that it was like driving down the highway and sticking your head out the window. More than one medical professional remarked how incredibly high her pressures were and wondered how she tolerated it. That fact is that she didn't tolerate the high pressures. She wasn't keeping her mask on at night. She was also beyond tired and ready for bed by 8 pm each night. 

In the last couple of years, several tests were conducted. Opinions were sought out. Options were made available. 

One professional nonchalantly suggested the best course of action would be to do a tracheotomy, which would bypass all the possible obstructions in the nose and the mouth. When I told this well-respected professional how I shocked I was by this option, he responded, "I don't see why you are so surprised. Your child is severely disabled. She doesn't even talk." 

As if that was a reason to do it? I never saw that "professional" again. A tracheotomy may have solved one problem, but it would have caused many new ones. It wasn't an option for us. 

And so we found ourselves going back to something offered 2 years prior, a multi-level surgery to address her obstructions. The first time the surgical option was offered, I said I would never do the surgery on my child. Things changed though, something needed to be done since Jaycee was no longer able to tolerate her pressures. Never say never! After a sleep endoscopy test which absolutely showed what was collapsing in her mouth and throat causing the obstructions, a plan was developed. 

We knew going in to this surgery that it was going to be hard as there were 5 places in her nose, mouth, and throat area that would be operated on. Jaycee's recovery was gruesome after her tonsil and adenoidectomy when she was 3. But, she was 11 now...older, stronger, and a much better eater. I was cautiously optimistic about her recovery. 

The surgery was absolutely worse than her tonsillectomy. Jaycee was older, but her response to pain was similar. As long as she felt pain, she refused to eat and drink. One night in the hospital was expected, but Jaycee needed a couple more. When we came home from the hospital, I tracked every ounce and she was barely meeting the daily goal to stay hydrated. Then she developed thrush- most likely due to the medications she was on post surgery coupled with the fact that she wasn't eating or drinking well. The thrush added to her pain and discomfort. The word stressful doesn't begin to describe the situation but it's the best word I have. (Other than horrible and terrible) She was in a lot of pain and had to be encouraged (often forced) to take anything by mouth including her pain medications. 

Then it got worse. Through the baby monitor one night, I heard Jaycee coughing. I went to her room to check on her and found she was coughing on blood coming from somewhere in her mouth. This is a long story, but I'll skip ahead to the part where Jaycee ended up back in the hospital for observation. 

About a week later, we awoke to Jaycee covered in blood again. A second bleed! Ugh! This time, the bleed had stopped by the time we discovered it. (Jaycee apparently woke up, took off her blood covered nightgown, changed into a new nightgown, and put herself back to bed!!!) Again...long story that picks up where this blog post began.... the emergency room with Jaycee arguing with me when I told her I loved her. 
I'm sure the surgery was confusing. I'm sure she didn't understand her pain. I'm sure it was all mentally and physically exhausting for her. It certainly was for my husband and I, and we didn't experience the pain of the surgery. I'm sure at that moment Jaycee wondered why her mother and father had allowed this to be done to her. 

Parenting is hard. Deciding what to do for your child with health problems is extremely complex as you must weigh risks and benefits. The decision to do the surgery was done with prayer, research, thoughts, worries, and hope for a better future. 

That surgery was 4 1/2 months ago. I still hate the thoughts of Jaycee's recovery and could talk to you for an hour about everything that didn't go as planned. I'll just say this. A sleep study just 6 weeks post surgery (which was only conducted so she could safely restart her bi-pap as we were using oxygen only after surgery) showed improvements already! The full effect isn't seen until 6 months post, but just 6 weeks later, Jaycee's pressures were dropped to a more tolerable level. We knew this surgery wouldn't get rid of her bi-pap machine. We were hoping for the result that occurred just 6 weeks later. Plus, Jaycee can now cough up mucus. She's never been able to do that! 

And so...
I sat in that emergency room feeling crushed from Jaycee's complications and her doubting my love. I wished for a time machine. I wanted to go back before the surgery and opt out of it to spare her of this pain. At the same time, I knew it would be better in the future after she was completely healed up. I had to simply give it time.

When I tell my daughter that I love her now, she says it back to me. 💓

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Thursday, November 9, 2017

Therapy Tip: Thanksgiving Ideas for Language

It's Thursday, which means it's Therapy Thursday here on the blog. Last month, all my posts were dedicated to Down syndrome awareness month, but the Therapy Thursday is up and running again. Like always, this is the day I share a tip based upon my experience as a pediatric speech-language pathologist and the mother of the child with special needs. Today's tip is:

Building Language During Thanksgiving

Thanksgiving will soon be here. I love using holidays to work on vocabulary and language skills. It gives me a chance to change up some of the things I do in therapy, which breaks up the routine for me and the child.

So, here's a few ways you can address some language skills using Thanksgiving themed items:

1. Make a turkey craft: 
There are many different patterns and ideas online on how to make a turkey for a simple craft. (Here's a link to some examples on a great website.) I have made turkeys out of brown construction paper with fake feathers. I have also traced the child's foot for the body of the turkey and traced the hands for the feathers. There's lots of different options out there. You can choose which type of turkey craft to use based upon the child's abilities.
I work with toddlers, so I typically do the simple crafts. Prior to seeing the child, I will have all the materials cut and ready to go. When you make a turkey craft in therapy, you can work on:
-Body parts: Name the parts of the turkey (feet, eyes). You can also have the child point out the parts on their body as they go along. If you do the craft that requires you to trace the child's foot and hand, you can reinforce foot, hands, and fingers as you do the tracing.
-Following directions: Making a turkey gives many opportunities for the child to follow directions. Think about combining directions to make them have 2-3 steps, so it will be harder for the child. Examples: Pick up the feather, and put it here. Get the glue, and put it on this.
-Attention span: Whenever you are doing something that involves multiple steps, you are helping the child stay focused and learn task completion. Don't let them stop until you're done!

2. Make a Thanksgiving card or collage:
Using clip art or free pictures online, you can easily print Thanksgiving related pictures. I typically use pictures of a pumpkin, leaf, turkey, boat, and a few different foods that are common on Thanksgiving. Sometimes, I'll print out a Pilgrim man and woman but call them 'mom' and 'dad' because those are common words I'm addressing with toddlers. I like doing these simple paste and picture projects because I can teach vocabulary as the child glues them on one at a time. Plus, they can look at this creation at home with their parents to reinforce the words.

3. Sort Turkeys:
If you search online, you can find turkey coloring pages (like these) to give you multiple options for some sorting activities. You can:
-Color sort: Color the turkey just 1 color but make 3 or 4 turkeys in this same color. Choose another color and make the same number of turkeys. Now, you can have the child sort through the colors (purple turkeys versus red turkeys). I have the child sort them into different baskets. I work with delayed 2 year olds, so sorting 2 colors is enough. But, you can do multiple colors if you want. Or, you can do 2 turkeys in 8 different colors and just look for matches.
-Big/little: Print out different sized turkeys and cut to size. Provide a basket for each size you are using. I usually just do big and little. Have the child sort through if the turkey is big or little. With toddlers, I make a clear distinction between the two sizes so it is not confusing.

Hope you can use some of these activities or adapt them for older children. Most of these take minimal advanced preparation and materials. Happy Thanksgiving!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 
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Tuesday, November 7, 2017

Diagnosed: Birth -VS- Childhood

I have been doing some thinking (too much probably) about my children and their paths to diagnosis. If you have ever read this blog, then you'll know that my daughter Jaycee was diagnosed with Down syndrome at birth 11 years ago. Just a few months ago, my son was diagnosed with Ehlers-Danlos syndrome at age 7. (If you missed the post on his diagnosis, you can read it here.)

Photo Credit: Short Photography
I responded much differently to each of their diagnoses. After Jaycee was born, I was in complete shock. For 9 months, I thought I was going to have a healthy baby girl. Learning at birth, she had Down syndrome, an AV canal heart defect, and would need an open heart was too much! I had a very hard time adjusting to the diagnosis.

With Elijah, the news of a diagnosis was sort of a blessing. I began having some small concerns with him around age 2 when he couldn't run without falling. He ended up in physical therapy and occupational therapy for his low muscle tone for years. There were times when I would be very confused about some of his problems. Why did he have low muscle tone? Why is he "uncomfortable" sitting? Why did his toes bend in funny ways?

I researched some of his problems and ended up with no answers. There were times I was really fixed on finding an answer. There were other times when I would tell myself that whatever was wrong with him must not be too bad. After all, he was age level in academics.

I took him to a few specialists looking to see if there was an underlying reason for his motor delays and muscle issues. The first orthopedic doctor completely blew me off. I mean completely. I was treated like an over-reacting parent. I was told his problems were minor and weren't really impacting him. I disagreed in some respect because he did need both physical and occupational therapy after standardized testing showed severe delays in his motor skills.

The second orthopedic person I took him to a couple years later examined Elijah for less than 2 minutes. He told me he was fine. His gait (the way he walked) was strange, but nothing to worry about.

I was done.

Let me tell you something. There's nothing worse than having some legitimate concerns about your child, and a doctor can't even spend 5 minutes checking into things before he determines there's nothing wrong.

By the time I took Elijah to a podiatrist to look into some shoe inserts, I was not expecting anything earth shattering. This man took an interest in my son. He wanted to hear about some of his problems because he noticed something with him immediately. In less than 5 minutes of watching him walk, run, jump, and move his body, he told me he suspected Ehlers-Danlos syndrome. (We later saw a genetics doctor who confirmed the diagnosis.)

So you see, my son's diagnosis was different. It came after years of questions and second-guessing myself. After knowing what the problem was, so many things made sense. The information was helpful, and it let me finally understand my son.

The future of chronic pain and joint problems in store for Elijah was depressing. That part of the post-diagnosis reaction was similar to learning about Jaycee's Down syndrome and associated intellectual disability. The parts of the diagnosis that are predictive in nature were tough for me for both kids. There are some things about each diagnosis that sounded scary. Unfortunately, time is the only thing that reveals how a diagnosis will manifest in an individual...not information in a book.

I handled Elijah's diagnosis easier in some ways. I had 7 years with my son before he was given a life-long diagnosis. I had time to see my son's personality and strengths. This kid was memorizing sight words at age 3 and begging to sit in his sister's home therapy time with me. He's the kid with a love for presidents, state capitals, and state capital buildings. He loves playing guitar and beating on his drum. Before Ehlers-Danlos syndrome, there was Elijah. I knew that sweet boy well. After his diagnosis, he was the same kid with a different possible future.

It was different for Jaycee. She was born and Down syndrome was there immediately. I had no time to get to know her. Down syndrome was a dark shadow cast over her for so long. I couldn't see past it. Maybe it was because the NICU doctor literally pointing out everything on her body that indicated Down syndrome. I looked at her, and I saw only Down syndrome initially. She was also a baby with a heart defect. She slept and slept and slept those first few months. Her personality, preferences, and opinions became known over time. Jaycee was in there all along, but I knew Down syndrome more than I "knew" Jaycee at first.

Getting a diagnosis for your child at any time is hard. It's an emotional roller coaster, and it changes the life course for the parent and child. But, a diagnosis isn't the totality of a person. There's an individual person with a diagnosis. That person has a personality, attitude, opinion, and my love. That love and bond is stronger than any diagnostic term. I knew after Jaycee that we could get through any present and future diagnoses, because our love was great. By the time Elijah's diagnosis came around, I knew this well. I knew I could face that future with my son, because love has a power to want to conquer all obstacles.
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Tuesday, October 31, 2017

Down syndrome Awareness: The Finale!

For 31 days, I have shared stories, thoughts, guests posts, and information.

For 31 days, readers have visited this site.

And, I hope that somewhere in that 31 days I have reached a parent with a newly diagnosed baby and assured them that they can do this. I hope I've given a perspective on topics related to Down syndrome that can help families, therapists, and the general public. I also hope that my stories of my daughter's life have helped people see that life with Down syndrome isn't disastrous. In fact, it can be very, very good.

Thank you for stopping by here throughout the month and taking the time to read.
The top ten countries that represented the readers this month were:
-USA (Thanks, fellow Americans!)
-United Kingdom
-South Korea

The 5 most popular posts during this month were:
1. Help That Hurts (Guest Post by Dana)
2. Siblings, Down syndrome, & A Hole in the Ceiling (Guest Post by Ger)
3. Are Kids with DS Stubborn?
4. My Worst Day with my Daughter with Down syndrome
5. Awkward Moments: Special Needs Edition

If you missed one of these, take time to read them. They are all great!

Check us out on Facebook too!!! I put a few extra things on FB this month.

Hope you come back next week!
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Monday, October 30, 2017

Meet Roshni: No Limits with Down syndrome

Today, I'm welcoming writer and mom of a toddler with Down syndrome, Sruthi, to this blog. Sruthi has been mentoring a young adult with Down syndrome named Roshni and would like to share her accomplishments today. 

Roshni is a 19 year old young woman with Down syndrome who enjoys life to the fullest! She is one of four siblings. She has a brother -25 and two younger sisters ages 14 and 13. She is a wonderful, kind, and helpful older sister to her younger sisters.

She attends a college transition program through her school where she is gaining work experience through various internships. Currently, she is interning as a teaching assistant in a KG classroom and loving it!

Roshni enjoys cooking and preparing her favorite dishes such as guacamole, Mexican dinner, and smoothies. Her guacamole is out of this world delicious! 

She likes to try all different kinds of foods but Indian and Mexican foods are her all time favorites. She aspires to be a chef one day.

Roshni loves to listen to all different kinds of music and enjoys learning the lyrics and singing along to her favorite songs. She also enjoys playing basketball, tennis and swimming. 
In her free time, you will find her constantly drawing and creating abstract pencil drawings. These pieces are quite remarkable. She is also taking a class in school where she is learning to create art pieces using technology such as various iPad apps. She has created many unique and artistic pieces which have been chosen to be displayed at her school art gallery.

Her latest adventure is learning how to make home made bath and body products such as soaps and body butter. She is also learning to sell her handmade products. She is enjoying learning this new skills, and we hope she can be an entrepreneur like lots of amazing young adults in the Down syndrome community.

It sounds like Roshni is a busy gal with an exciting future ahead of her. Thanks for sharing Sruthi! You can read more of Sruthi's writings on the site No BS about DS.
You can see some of Roshni’s soap creations at
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