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....

...in 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 surgery...it 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!)
-Canada
-Russia
-Ireland
-United Kingdom
-Ukraine
-Australia
-South Korea
-France
-Germany

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 https://www.facebook.com/tuyaessentials/
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Sunday, October 29, 2017

Siblings Who Like Each Other

Happy day 29 of Down syndrome awareness month!

I have almost made it through the whole month- sharing a post each day on some topic of Down syndrome. Today, I'll show a candid video I took of my kids. 

My kids (ages 11 and 8) really like each other. Truly... They may have some small squabbles, but they get along really well. My son (who is actually younger) jumps in and helps Jaycee without being asked sometimes. He is aware she may need help, and he just does it. He's a great brother! 

A few weeks ago, the kids were bouncing on a jump pillow at a campground when I took this video. My son noticed Jaycee's balance was a bit off since there were other children jumping on this inflatable at the same time, and he did this: 


People wonder all the time what the dynamics are in a family like mine. They wonder if their children will form good relationships. I hope this video is the proof some people are looking for!
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Saturday, October 28, 2017

I Never Thought...Day 7

This week for Down syndrome awareness month, I've been sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.
***
This post is different today. This post is about a moment that is a blessing and a curse all at the same time. A few years ago, Jaycee was blessed with something I never thought would happen to one of my children. She qualified to receive a wish from Make-A-Wish.

Years of medications, hospital admissions, surgeries, and daily medical interventions led to Jaycee's health being serious enough to qualify for a wish. It wasn't necessarily her Down syndrome that put her in the situation. Her AV canal heart defect, Wolff-Parkinson White syndrome (another heart condition of the electrical system), asthma, sleep apnea, recurrent pneumonia, and severe reflux all together make simple colds anything but simple. No one could predict all of Jaycee's health issues when she was a baby, and no one can tell me today what her future holds.

I never thought I'd be the mother of a child with a complex medical history. I never thought I'd sleep in an ICU room watching my child's monitors. I never thought I'd see my child on a ventilator for an illness, but I have more than once.

And in all the craziness of Jaycee's medical history, something good happened. It was Make-A-Wish.

For her wish, Jaycee wanted to meet Barney the Dinosaur at Universal Studios, which meant we stayed at Give Kids the World Village and visit other Orlando area parks. Here's a few highlights:

An amazing picture with the Toy Story characters

Jaycee meeting her favorite! Barney!

Getting some time with Elsa and Anna & the rest of the Frozen gang at Disney was probably the second most magical moment. 


I never thought my child would battle multiple health problems. But, I also never thought this would lead to Jaycee becoming a wish kid. The wish was a bright spot in Jaycee's life before, during, and afterward. We looked forward to her trip, enjoyed every minute of it, and still talk about it today.

Sometimes life doesn't turn out how you think it will, but sometimes good comes out of bad situations.

You can read more of Jaycee's Wish Story HERE.

Here's a story of her meeting BARNEY.
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Friday, October 27, 2017

I Never Thought...Day 6

This week for Down syndrome awareness month, I'm sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

****
After Jaycee's diagnosis of Down syndrome, I never thought our everyday life would be so much fun. First, let me be real. There are some hard times. Behaviors are hard to deal with. Surgeries are no fun for anyone in the family. Illnesses are equally unfun. The lack of verbal speech has not always been easy. But, we have had many, many, many fun and good days!

I didn't know what our future would be like when Jaycee was a baby. I had a thousand questions for which only time would reveal the answers to. But this question was a big one: What would we be able to do as a family when there's a disability to consider?

Well, the answer is...tons of things.

Here are some things we have enjoyed doing the past few years as a family.

Theme parks! We love them! We have to consider how hot the temperatures will be and look at the waiting time to get on a ride, but we can enjoy theme parks together. We have come to love going to one of our nearest parks, Holiday World, which thankfully has a wonderful disability access program.

Jaycee with the important people from Holiday World. She loves characters!

We also do vacations! We generally don't do extravagant vacations. We aren't jetting off to another country or even the other side of our own country. But, we find plenty of things to do when we have the extra money and time to travel. PS- I am THE worst rider in a vehicle not Jaycee...not even close. 

Here's Jaycee rubbing Lincoln's nose this summer on vacation.


Small stuff! I, personally, love to do small things at home! Jaycee has become interested in fishing, which is something we can easily do where we live. She's braver than me, because I do not want to touch a fish or a worm. I prefer other home activities such as making pizzas, sitting on the porch swing, going for golf cart rides, and watching movies together. There are many things that we can do together as a family.



So no, I never thought that our everyday life would encompass so many fun times together. I worried that Down syndrome would prevent us from having some "normal" family experiences, but I should not have been worried. We've done many things together and developed our own family hobbies that make life fun.
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Thursday, October 26, 2017

I Never Thought...Day 5

This week for Down syndrome awareness month, I'm sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

***
When Jaycee was born, I never thought I'd see her standing on the baseball field at Busch Stadium meeting a Cardinals' player. Nope-not in my wildest imaginations did I picture that! If you read Sunday's post, you'll know that in 2016, Jaycee's name was picked from a pool of fundraisers from the Down syndrome Association of Greater St. Louis to meet Yadier Molina at home plate.

This year, her name was picked again!

I was riding in an ambulance this summer with two paramedics and Jaycee when I checked my email in an attempt to stay awake. My husband and I had been up half the night with Jaycee as she had two hemorrhages related ton an oral-pharyngeal surgery. It had been a loooooong and scary night! She was being transported from an emergency room to the hospital that performed the surgery to get checked out. I was feeling very defeated, exhausted, emotional....you name it.

Then, I read the email stating Jaycee's name was picked again to be part of the Down syndrome Association's starting line up with the St. Louis Cardinals. I was excited. I called my husband who was following the ambulance. We both needed to hear some good news after having 2 weeks of problems following this surgery (that would later be 4 weeks!).





The day of the big game came. Jaycee was excited to be at a game with all her friends and family. She stood in the warning track during the national anthem. Then her name was announced, and she ran to the outfield with one of the Fred Bird girls. I was too far away to get a good picture, but there's Jaycee with the green shirt to the left running to the outfield.

 She waited for #55 Stephen Piscotty to join her on the field. Then he signed a ball for her (and another friend with Down syndrome). Again...too far away for a good picture, but you can see him (sort of) on the jumbo screen. You can see his red hat anyways.



















Afterwards, Jaycee was eager to show off her signed ball!




Did I picture an amazing experience like this when I heard Down syndrome? No, I didn't. I had no clue just how full, amazing, and wonderful Jaycee's life would be! Down syndrome has not been what I thought it would be, and that's a good thing!


Special thanks to the Cardinals baseball team and the Down syndrome Association of Greater St. Louis for giving your time and loving families like mine!

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Wednesday, October 25, 2017

I Never Thought...Day 4

This week for Down syndrome awareness month, I'm sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

***
When I was told of Jaycee's Down syndrome and associated problems, I never thought I'd see my daughter a community of people in her life supporting and celebrating her. When Jaycee was born, I felt alone. I knew of only one other family in my county who had a child with Down syndrome. I personally knew of no one who had a baby in heart failure and needing an open heart surgery. I felt that no one had a life like mine. It was a very isolating time.

Eventually, I came to meet other families on similar paths, and even some people in my area with children with Down syndrome.

Over the years through various groups, my family has had several opportunities to be surrounded by people supporting Jaycee's diagnoses and meet other children/adults like her. These awareness walks and events remind me that our family isn't alone. We fit into a community of people who understand even if the specifics of our lives are different. Here's some examples:

For a couple of years, the kids and I participated in a local Childhood Apraxia of Speech walk. Jaycee, along with the other children with CAS, were given a medal and made to feel like the stars they are for a day. I met other moms whose children didn't naturally acquire verbal speech and who knew what CAS was (which is a rarity). 

Since Jaycee was 1, our friends and family have attended various Down syndrome walks once or twice a year. When Jaycee is surrounded by dozens of people who love her, I'm reminded of just how many people her life has touched. 

Sometimes, being in a community of people brings special opportunities. Our local Down syndrome group has teamed up with a minor league baseball team to provide a neat experience for those with Down syndrome the past few years. Those with Down syndrome had time on the field and a meet and greet with the players. This same DS group has also held dances, swimming parties, and other events where we can see other families like our own and learn from each other. 



I never thought when I heard Down syndrome (and Childhood Apraxia of Speech) that I would meet so many other people on similar paths as mine. I never thought my daughter would have such a community around her, and that so many people would care about my child! I thought I was alone and on my own when she was born, but I thankfully was wrong

Special thanks again to our Down syndrome Association and the volunteers in the local group for helping families connect and celebrate. A special thank you to all of those who have been on team Jaycee for awareness walks and events. We feel the love!


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Tuesday, October 24, 2017

I Never Thought...Day 3

This week for Down syndrome awareness month, I have been sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life.

***
When a Down syndrome diagnosis was given, I never thought I'd see my daughter become an athlete. I was warned early on that Jaycee would meet her developmental milestones late. Her low muscle tone and extra flexibility meant that Jaycee rolled, crawled, walked, ran, and jumped much later than other children. Over her 11 years of life, Jaycee has spent hours and hours and hours in therapy trying to achieve these motor skills. Her successes were exciting, but she still has low muscle tone that affects her today. 

There are some children with Down syndrome that can join sports teams with peers, but my daughter is not one of them. She's not at peer level in sports, and she never has been. We live in a rural area, so there's never been any "special programs" for Jaycee either. Sports really aren't that important in life, so I was fine with her never playing them. 

But that all changed. My daughter's grade school teacher (and classroom aides) decided to bring Special Olympics to their school. This meant twice a year, Jaycee would be participating in events for Special Olympics. She would be on her very first team! 

I didn't know seeing my child in a team uniform would be so emotional for me. My daughter was an athlete! Years ago, I never thought I'd see this child, who took almost 2 years to learn to walk, run in a short 50 m race. Back then, I never thought I'd see this child, who didn't hold her bottle until almost a year old, throw a softball and qualify for the state games. I never thought I'd see my husband give Jaycee pointers on how to best throw the softball because he threw shot put in high school.


Special Olympics Athlete 

Jaycee receiving a medal at the state games. 

Jaycee and her biggest fan (me!)

Yep-it's true. I never thought I'd see my child compete and be an athlete. I also never thought it would mean so much to me! There are many things I never thought I'd see my child do, but Jaycee has showed me how much she can do given an opportunity!

Special Olympics really is a gift to families like mine. Consider volunteering or donating to help those with disabilities continue to have chances like my daughter has received. Special thanks to Jaycee's coaches and helpers who give their time and resources to keep Special Olympics going at our school. 
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Monday, October 23, 2017

I Never Thought...Day 2

This week for Down syndrome awareness month, I'm going to share some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

When I was told of my baby's Down syndrome and associated problems, I never thought I'd see my daughter grow up to be in a pageant that allowed her to shine. First, let me say that I'm not a pageant person, but our town does have a local pageant each year for the annual Fall Festival celebration. I never felt I could sign Jaycee up for the local event because she couldn't speak at that time. Participants had to be able to answer questions for the competition, and I didn't want to be the only mom on stage interpreting her signs, gestures, and vowel sounds. There was a tiny, tiny moment in which I wished my daughter could do this like so many girls her age, but it just wasn't to be. Or was it? 

Through social media, I found out about Butterfly Dreams, which hold an annual pageant in my state for individuals with Intellectual Disabilities. When I came across Butterfly Dreams, we had just gotten home from a hospital admission with Jaycee. I needed a positive moment to replace the one Jaycee had just endured. So, I signed Jaycee up for it, and a pageant mom I became. 

For the past two years, Jaycee has participated in the yearly Illinois Butterfly Dreams pageant. The pageant is a big production and aims to provide the participants with an amazing experience. There's an opening number with a group choreographed dance. There's a short interview on stage where participants answer questions using their devices, gestures, speech, or an assigned PAL speaking for them if needed. An evening wear portion allows all the guys and gals to look their absolute best. There is also an optional talent show too. The first year, we watched the talent show to see what everyone did. The second year, Jaycee played her tambourine to a favorite Christian song. She rocked it out by the way! The pageant night is a joy to watch and is so much fun for the participants. 


Jaycee waving at the crowd after answering a question with her communication device.

Every participant receives a trophy and a crown at the end. 

Some people may think a pageant for people with Intellectual Disabilities is not that important. But, it has made a lasting impression on my daughter and gave us a new bonding experience. Jaycee and I had a reason to go dress, shoe, and jewelry shopping. What mom wouldn't like that? This year, we shopped online for her dress. Jaycee chose the pink color, and she was so excited to try it on when it arrived in the mail. The whole family helped Jaycee's tambourine routine practice for the talent show, and we all were excited to see her shine on stage. Jaycee even had her grandparents and a few cousins in the audience clapping and cheering her on.

If anyone new comes to our house, Jaycee will show them her trophy and crown from the pageant. She will sign butterfly and try to tell you what she did. Jaycee had fun, and she loved dressing up as much as I loved seeing her dress up.  

Jaycee in evening wear this year. She loved her pink dress. 

The princess and her family this year
So yes, I never thought I would see my minimally verbal daughter with Down syndrome have an opportunity to be in a pageant, showcase a talent, answer questions in front of an audience, and enjoy the spotlight. But, she did! 

Her life hasn't been what I thought it would be, and that's a good thing!


Watch the video of her talent performance HERE!


Many thanks to Butterfly Dreams board of directors and volunteers for giving people like my daughter this opportunity of a lifetime. 
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Sunday, October 22, 2017

I Never Thought....

This week for Down syndrome awareness month, I'm going to share some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

Most of the things I'll share this week have been possible in part by different organizations or charities that support and enhance the lives of people with disabilities. For that, I'm grateful.

****
When I found out my newborn baby had Down syndrome and a heart defect, I never pictured her standing at home plate meeting a well known baseball player. Yet, it happened. Here's Jaycee meeting Yadier Molina from the St. Louis Cardinals last year.




Our local Down syndrome association has a walk and awareness event with the St. Louis Cardinals every year during one of their home games. A few of the older children-adults with Down syndrome get to take part in the starting lineup with the Cardinals. The people in the starting lineup are either the top fundraisers for the association's yearly funds drive or (like Jaycee) win a raffle from the pool of other fundraisers. We were so thrilled that Jaycee's name was drawn so that she could have this experience. She was so exited to meet a player, get a signed ball, and meet Fred Bird the mascot. 



So yes, this is something I never thought my child with Down syndrome would have an opportunity to do. A diagnosis does not determine an individual's life course! Jaycee has proven that to me time and time again.

PS-Joining a Down syndrome group has its perks!

A special thank you needs to be given to the St. Louis Cardinals and the Down syndrome Association of Greater St. Louis for helping people like my daughter have these experiences of a lifetime. 
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Saturday, October 21, 2017

Awkward Moments: Special Needs Edition

Everyone has times when an awkward moment hits. You know...someone makes a comment that isn't necessarily about you, but it applies to you and the person doesn't know it.

As a mother of a child with special needs, there have been some awkward moments that have happened over the years. These moments strike when I least expect them.

Imagine being me, the mom of a sweet child with Down syndrome who attends a special education program, when people make these statements:


"I heard some terrible news. The doctor thinks that Mrs. Jones is going to have a baby with Down syndrome." Terrible? Is my daughter's life terrible? Hmmm...

"We need to have special prayer with our church because we think we are having a baby with Down syndrome." Followed by several minutes of prayer for the unborn baby not to have Down syndrome. Wait, what?

"I wish my child didn't have to have an IEP. It's so sad." So sad. Both of my children have IEPs after all. 

"I don't want MY child is the special education room. That's for kids who are really bad off, not MY child." (I have heard this one several times!!!) Sorry but maybe your child is one of those children, and maybe it's ok if your child needs the same type of support as my child. 

"I don't want MY child in the special education room with all those special ed kids who are mean and don't talk!" Not talking does not mean the child isn't smart. I should know, my child didn't talk for years.

"Can you believe she did that? She's so r*tarded?" The r-word! Really??!!

"I told him that he's doing it wrong. I told him that's the way the special kids do it." Oh my goodness! Did you really just say that to me?

*****
Ok, I know people make mistakes and sometimes you say some things without thinking. But, really sometimes I can't believe what people say to me. 

There's something important that I try to remember though. I have said some offensive comments without thinking that I realized later on that I should not have said. I'm not perfect. No one is.

So, I try to forget it and move on. I try not to hold grudges or take things personally that weren't about me personally. Everyone deserves forgiveness, me included.

Awkward moments bring opportunities for moments of anger and sadness, but they can also bring opportunities for forgiveness and freedom.


Happy Down syndrome awareness month! 
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Friday, October 20, 2017

Dear Pastor, Thanks for Baptizing My Child with Down syndrome

Pastor Chad,

It's hard to believe that almost 3 years ago, I watched you baptize my little girl, Jaycee. You probably have no idea what that moment meant to me and my family.

In my eyes, Jaycee had been part of our faith for a few years. Jaycee has always enjoyed going to church, insisted on using her talker to pray before meals, understood Jesus and his importance in Christmas, and loved to worship God.

Our church, like many others, generally believe that in order to be baptized, someone should first confess Jesus as their savior with their mouth. Having Down syndrome and only speaking a few words, this prerequisite seemed almost impossible for Jaycee.

I often wondered when I watched other children being baptized when Jaycee's day would come. How and when would this happen?

In 2013 as I sat in the intensive care unit, I was afraid Jaycee's moment had passed. Jaycee was on a ventilator and a room full of IV pumps and machines needed for the treatment of septic shock and pulmonary and cardiac failure. That month in the hospital was scary and almost life ending. But, she made it! I left the hospital with a sudden desire to get Jaycee baptized. When Jaycee was discharged on October 19, there was so much to do with her recovery that I pushed the baptism on the back burner.

Finally, I got brave and asked my husband about baptizing Jaycee. He was unsure but after some time to reflect, he decided it was a good idea. Still, I did nothing. I was afraid to ask you to do a baptism on a minimally verbal child. I was afraid you would say no. I know you take the act of baptism seriously and I was afraid you would think I was making Jaycee do this. I was afraid of the rejection I would feel for myself, our family's special situation, and Jaycee if you said no. I didn't want to face that rejection.

For months I trudged along with the thought of baptism coming less frequently. Then, we suddenly found ourselves in the intensive care unit with Jaycee again when a simple dental procedure resulted in aspiration pneumonia. After a scary day in the hospital spent teetering on putting Jaycee back on a ventilator, I told my husband, "If she makes it out of here, she's getting baptized! We can't wait!"

When things settled down, I bravely wrote you an email expressing my desire for Jaycee and trying to make a case for her to get baptized. I waited (impatiently) for a response and became nervous when I saw you responded back. You said you were going to pray about it. I admired you for not telling me no right away. As I waited for your final response, I came up with alternative plans some of which involved baptizing her in a hot tub with a clergy off the street.

With nervousness, I opened your final email in which you agreed to baptize Jaycee if it was our desire. You came up with a plan to baptize her after service so that she could take her time and have her family gathered around her to make her comfortable. You had enough forethought to ask me about her comfort level with water. A date that worked for both of us was set.

I had some time to prepare Jaycee for her baptism. We watched YouTube videos of people getting baptized. I wrote Jaycee a special story about it using words I knew she would understand. Then the week before the special day, I started to practice baptizing her in the bathtub without actually taking her head under the water. She understood what she would do, and I was confident she could do it.

On October 19, 2014, eight-year-old Jaycee entered the water with a smile on her face. Her family and close friends surrounded her to witness this happy occasion. You spoke to our family briefly and then to Jaycee trying to use some of the words I used with her. Then the big moment came and Jaycee wasn't scared at all. She left with the same smile on her face. There were tears that day but none of them were from her. It wasn't until later that I realized what happened on October 19th the year before making it even more special. (Read above if you missed the date connection!)



I wish you could have seen Jaycee watch the video at home later while she smiled and cheered for herself. From that point on, when she referred to her baptism, she signed "swimming." You missed the moment in the church one Sunday when Jaycee pointed to the door leading to the baptismal and signed "I went swimming there." I wish you could have been in my living room the day I was watching one of your sermons online when Jaycee looked at the screen and signed "That guy and me swimming." In her bedroom, Jaycee looks at her baptism pictures and has told many visitors of her "swim" at "church." You missed the conversations with me and other parents of children with special needs when they asked me how Jaycee did the baptism with no fear and wondered if their child could do it too. Since you missed these things, I want you to know how much that day meant to us, people who witnessed it, and other families with children with special needs.

When we found ourselves back in the intensive care unit since then, I was comforted by the fact that Jaycee was baptized. For that, I thank you. I thank you for allowing Jaycee to take part in her faith even if she can't do all the steps everyone else does. Thank you for helping our family have that special memory in the church and not in some one's hot tub.

We'll be sure to remind Jaycee of what she did on this date every year, so she'll never forget.

Evana
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Thursday, October 19, 2017

Happy Baptism Anniversary!

It's a special day today!! Three years ago today, Jaycee was baptized! 


Today for Down syndrome awareness month, I want to celebrate this occasion. Yes, people with Down syndrome can get baptized (or take part of other religious acts). 


Before the "dunking" under water. Jaycee is looking at some of her family and friends off to the side watching. 

Another picture before the event!


The after! She did it! She was happy too!
Age 8


More on this baptism tomorrow! Stay tuned!!!


This post is written for Down syndrome awareness month. Bloggers write all 31 days in October for Trisomy 21 awareness. 
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Wednesday, October 18, 2017

The Caution with Chronic Illness in the Family

After this there was a feast of the Jews, and Jesus went up to Jerusalem. Now there is in Jerusalem by the Sheep Gate a pool, which is called in Hebrew, Bethesda,[a] having five porches. In these lay a great multitude of sick people, blind, lame, paralyzed, waiting for the moving of the water. For an angel went down at a certain time into the pool and stirred up the water; then whoever stepped in first, after the stirring of the water, was made well of whatever disease he had.[b] Now a certain man was there who had an infirmity thirty-eight years. When Jesus saw him lying there, and knew that he already had been in that condition a long time, He said to him, “Do you want to be made well?”
The sick man answered Him, “Sir, I have no man to put me into the pool when the water is stirred up; but while I am coming, another steps down before me.”
Jesus said to him, “Rise, take up your bed and walk.” And immediately the man was made well, took up his bed, and walked.
John 5:1-9 NKJV

Before Jaycee, I had read the story of the man healed at the Pool of Bethesda many times. This man had been an invalid for 38 years. He had spent much time waiting by this pool hoping to be the first to step in when the water was stirred so that he could be made well.

Then Jesus came along. The man told Jesus that he had no one to put him into the pool when it's stirred and that someone steps in front of him preventing his healing. For years, I read this scripture with frustration at the man. He made excuses for why he wasn't healed, but his healing did come in a way he didn't expect.

After I had Jaycee, I got something new from this story. I thought about that man and the other people who stepped out in front of him. He suffered for 38 years, surely the people around him knew it. They never once thought about helping the man into the water first?

No! Instead, those around the water wanted to receive their healing. The passage tells us there was a great multitude of people with all sorts of reasons to want to step into the waters first. If they were first, they received their healing. Their life changed radically. At the same time though, their healing meant that other people (maybe worse off) were not and would have to continue to wait.

Can you imagine having the opportunity to change your life while others still suffer? Did they think about the people around them who would remain there still in their condition?

To me this scripture is a reminder. It is a story about how easy it is for us to be consumed with our own issues and problems and overlook the needs of others.

Early on after having Jaycee, it was very easy for me to become very self-absorbed in the middle of a health crisis. At birth, Jaycee was diagnosed with Down syndrome and a heart defect that would require open heart surgery. When we brought Jaycee home from the NICU, she was in congestive heart failure. After her heart surgery at 3 months of age, she needed oxygen for three months. After that health problem resolved, she started having an issue with her eyes and the beginnings of a very long battle of asthma that would lead to many hospital admissions and bouts of pneumonia. In other words, she moved from health crisis to crisis. Some were harder than others. There were some days of peace mixed in all the chaos, but the first year was extremely rough followed by more years of issues. The world of hospitals, sickness, and health problems was new to me, and I simply didn't know how to navigate it in a healthy way.

When Jaycee had a health issue, it would affect my emotions, thoughts, and attitude towards life. OK, it still affects me but I am armed with knowledge and understanding now. When I would hear about another person's health problem, I literally couldn't take it in. I had my own problems and it was all I could handle. I couldn't deal with anything else. Most likely, there were some people I should have stepped up and supported in times past but I didn't because I felt I couldn't. Not only that, I would get very irritated when someone complained about a health issue that was sooo not a big deal comparatively.

But, I've grown. I understand that everyone is on their own path. What may seem minor to me compared to what my daughter has went through is just the "worst" situation for another person. They need support, and I of all people know that! I have tried to develop patience and understanding for others in their own medical crisis even if I'm in the middle of one myself with my daughter.

This Bible story reminds me and challenges me. No matter how "bad" things are going. No matter what craziness is going on in my life. I need to stop and take a look around at the people I encounter. There may be someone in need whose being ignored by everyone else. Self-pity and self-centeredness only gratifies one person but a life looking outward can reach an unlimited amount of people. This is a lesson I'm challenged by often and hope to have perfected at some point in my life.


This post is written for the 31 for 21 challenge- where bloggers write about Trisomy 21 all 31 days in October. 

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Tuesday, October 17, 2017

When Kids Notice My Daughter's Limited Speech

I have always been amazed at how quickly children pick up on Jaycee's limited verbal skills. It isn't her Down syndrome necessarily that gets their attention first; it is her lack of words.

A few years ago, I took Jaycee to her brother's pre-school orientation. Jaycee was previously in this pre-school class, so she took her seat on the floor with all the 3-4 year old children while the teacher gave her short speech. I was listening to the teacher but watching Jaycee nestled in between all the younger children that didn't know her.

Jaycee was smiling and babbled happily, "Ba ba ba," as she often did.

One of the pre-school children said, "Do you talk?" Jaycee replied with a smile. The pre-school student looked at the child next to him and said, "I don't think she can talk." There was a brief discussion between the two of them about her speech, or lack there of, as they tried to figure out why this older child was babbling to them.

I wasn't bothered by this exchange. The truth is that she has struggled with speech for a long time. Her biggest gains in talking have came in the past two years (she's now 11 years old), but she has a long way to go to get clear speech that anyone could understand. It is seemingly unnatural for a child not to be able to speak. Many adults have trouble comprehending why a child cannot produce words. This is evident by some remarks that try to make sense of the delays by blaming inadequate parenting or a lack of trying. But, some children with complex speech-language disorders do struggle. It's not innate for them to make sounds and put those sounds together to produce words.

Sometimes a child will ask me why my daughter can't talk. It doesn't bother me. I like to tell them why she struggles with speech, so they can have a better understanding of people like Jaycee. I try to explain it like this: Jaycee can say some words like mama. But speaking is hard for her. Her mouth doesn't work like yours or mine. But she does know lots of sign language and uses her device to talk with me. She's really smart!

When my son was around 4 years old, he started to notice Jaycee's speech delays as well. He started to make comments like, "Sissy hasn't said her first word yet."

I don't know where he got that idea or the phrase "first word," but I corrected him.

"Sissy has words, just not many. You know she says things like bubby, mama, dada, and bye bye."

He noticed a difference with her speech, but he didn't seem clear on what the problem was. Interesting enough, my son thought that all children with Down syndrome were nonverbal like his sister for years. He would be shocked when he saw a person with Down syndrome talking and sometimes argued with me if they had Down syndrome or not.

I think questioning why an older child doesn't speak is valid for a child (& adult). Explaining the interactions between muscle weakness from Down syndrome and muscle incoordination from childhood apraxia of speech is complicated. But, I have tried over the years to focus on what Jaycee can do and place a positive remark in the child's mind.

I hope that children can look beyond the words they don't hear and find something else. Jaycee is fortunate enough to have several people in her life that are able to do this. I hope every child struggling with words is able to find these people too!

This post is written for Down syndrome awareness month when bloggers write all 31 days in October for the 31 for 21 challenge. 

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