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. 

A Mother's Thoughts When Her Child Doesn't Speak

When your child has delays in language, you experience many emotions and thoughts as a mother. When my daughter was born with Down syndrome, I knew she would have delayed language as children with Down syndrome begin speaking at a later age. However, that later age came and went with no words.

Today at age 10, my daughter says about 20 words clearly. She communicates mostly with sign language and her speech generating communication device. She is approximating more words than ever in the past year as she tries to make the vowel sounds in words while leaving off the consonant sounds.

I have had 10 years raising a child who was classified as either nonverbal or minimally verbal. As a speech-language pathologist working with toddlers, I am in constant contact with mothers who are concerned about their child's talking. With these experiences in mind, here are common thoughts a mother has as she waits for her child to speak.

1. "My child isn't talking, but it's still early."
This is the time when the mother starts to notice some delays with their child's language and speech. These are the early concerns. Some mothers at this point might seek help and have their child's development evaluated. Others might brush off these concerns and give the child more time.

When Jaycee didn't speak early on, I tried to find other reasons to be hopeful. When she learned the sign for more, I took comfort in the fact that she could learn language if she wasn't saying it.

2. "My child still isn't talking. She should be talking by now. Why isn't she talking?"
After some time, this stage of thought starts and lasts months or years. This is when a mother begins to question things they see or hear (or don't see and hear). By this time, the mother has most likely evaluated their child's language and has started some type of intervention. The mother is starting to get very worried as they see their child's peers saying much more than their child. The delays are becoming obvious to the mother and other people. This causes the mother stress and anxiety as their child's future may not seem to be taking a perfect path.

When Jaycee was 2.5 years old and only saying a couple of words, I had these thoughts often. I was stressed and worried about her. I threw myself into helping her at home working with her on sign language, oral-motor exercises, and verbal speech drills. I was convinced that I could do something to change the situation.


3. "A new sound/word! I heard it! It's coming!"
There will be a point when the child might say something new. Perhaps it's a new sound or noise. Perhaps, it is a new word. It will be exciting because you have been waiting for this moment. It will give you hope. It is the positive moment in your child's life that you have been waiting for. It will be met with celebration.

From here, mothers tend to take two routes. For some mothers, their child will go on to improve and speak. Their worries will slowly die down as their child begins saying more and the delays get smaller. For others like myself, the new word or sound stays just one word or sound. Nothing happens after that. This victory is short lived. Those of us mothers who continue waiting for a significant amount of words will continue on this thought process.

I remember the time Jaycee said "mama." I had waited for that word. It was exciting! Not only was it a new word but it was also the first time she had made a /m/ sound. I had reason to believe that Jaycee would now start saying more words and sounds. More words did come but months between them. Nothing happened quickly.


4. "She's not really talking yet. Something is seriously wrong."
By this stage, there is a minority of mothers who still find themselves with a child with minimal or no words in their spoken vocabulary well past the age of when these language milestones should occur. At this point, the mother realizes that something is very wrong. There has to be an underlying reason why the child isn't speaking. Now, the mother might seek out a second opinion, ask for more speech therapy, ask for a new treatment approach, or seriously consider alternative methods of communication. Tough decisions may have to be made and the mother may find themselves stressed at times over this thought.

When Jaycee was 5 years old and barely saying anything, I sought out a second opinion from someone with more expertize in this area. I was done waiting for words to come. It turns out my concerns were valid as Jaycee was diagnosed by the second opinion with severe childhood apraxia of speech, which was no surprise to me. It was then that we started the process to obtain Jaycee's communication device.

5. "My child may never be verbal."
Now years into a journey, a mother has come to the realization that their child may never talk at all or very little. This is a painful time for the mother. While this thought has always been in her head, the mother is now fully accepting this idea and coming to terms with what this may mean. This will affect the child's future educational and vocational options. This may also affect the child's ability to live independently. The mother does keep some hope of their child saying new words but some realistic expectations are now the focus.

For me, I had to sit with this thought for sometime to fully comprehend it. Even though this thought had caused me great fear years prior, it was now evident that it had validity. What did it mean for me and Jaycee if she never really talked? The scenaros played out in my head for months. I learned that I wasn't giving up on Jaycee talking if I accepted the fact that she never become very verbal.

6. "My child isn't talking much but any communication is good."
The thoughts in this stage with the mother revolve around thankfulness. Their child may not talk, so the mother is thankful for the things that she can do. The child may be using sign language, pictures, communication devices, or simple gestures to communicate. For the things the child can do, the mother is thankful. After years of hoping and dealing with emotions related to talking, the mother has reached a new level in her thinking. She is not focused on what the child is not doing but on what the child can communicate. When friends or family ask about why the child isn't speaking, the mother can talk about it plainly and without emotion.

For me, I went through this stage with Jaycee when she was about 8 years old. I didn't feel the need to compare her to other children anymore. I didn't feel guilty for not working on her language and speech at home. I started fully encouraging a total communication approach (sign language, spoken words, gestures, communication device). I was grateful that Jaycee had ways to communicate with me. Words didn't seem as important as communication in general.

7. "My child will probably not be able to have a conversation with me, but that's fine."
After years of hard work, questions, fears, and opinions, a mother has now come to the last stage. As she has watched her child grow older, the mother has truly come to terms with the fact that their child may never talk enough to hold an actual conversation. This now seems like a fact and not a loss. Her child is still her child with or without speech. They have found ways to communicate and bond that surpass words.

For me, this has been the last stage. As Jaycee has developed a small vocabulary, I doubt that Jaycee will ever speak in sentences or hold a conversation with me using words. But, it's ok. I'm not sad about it. We have our inside jokes, special sayings, and ways to communicate. Jaycee says what she can say and that's fine.




If you are a mom worried about your child not talking, hang in there. It's not easy. But, I can tell you that your perspective will change even if your child doesn't. No matter where you are on this thought process, then just know that you are not alone!

All She Wants for Christmas

"What do you want for Christmas?"

It's a common question that children are asked this time of year. And it's a question that Jaycee can't really answer.

We use total communication with Jaycee. That means we encourage Jaycee to communicate in any method she can whether it be sign language, gestures, words, or using her communication device that we call her talker.

Here's how our Christmas conversations typically go.

Me: "Jaycee, what do you want for Christmas?"

Jaycee: "Merry Christmas!" (on talker)

Me: "Yes, what do you want for a present for Christmas?"

Jaycee: "gift" (on talker) "me" (pointing to self)

We rarely get an actual answer to the question except when I cue her to the button on her device that says, "I want a singing Elsa doll, Peppa pig movies, and time with my cousin Gabby for Christmas." But I programmed that on her talker button not her. Does that count?

What Jaycee really wants is a mystery. She cannot tell me. The best answer I get is when I take her to the store. She loves to browse the toy aisle. The toys with characters she recognizes grabs her attention. She picks up toys, usually ones that makes music or noises, and then puts it right back on the shelf.

"You can have that. Do you want it?"

I gesture that she can put it in the cart if she wants it. But she hardly does. What does she put in the cart instead? Things she already has. A stuffed animal, movie, or toy she already has at home is what she gravitates toward, things she's familiar with.

"You already have this! Pick something else," I say in exasperation.

Then eventually, she will add a new toy to the cart. Success!!

And now there's a conflicting thought. I wish that Jaycee could just answer a simple question. Well, I wish she could understand the question. I wish she wanted something, and I wish I knew what that was.

On the other hand, Jaycee has a better attitude about Christmas than anyone I know. She doesn't care about the things she's going to receive. She doesn't sit around and ask me for toys advertised on commercials. Jaycee would be happy with anything she gets. She also loves going to family parties and cries when we leave. Her eyes light up when she sees the dessert table and enjoys everything she eats. She enjoys every minute of Christmas from the lights to the family meals.

That attitude is something we should all want for Christmas!

31 for 21: Jaycee "Says" Some Funny Stuff

Happy Witty Wednesday! Today, I will attempt to be humorous in my 31 days of blogging for Trisomy 21 challenge.

Though my daughter is minimally verbal, she still communicates. She uses a few words, novel gestures, sign language, and her speech generating communication device. Like any child, Jaycee sometimes "says" some funny things. Here's a few things that stick out to me:

• When Jaycee was in pre-school, I would ask her "Do you have any pets?"  Instead of saying no, Jaycee said on her talker, "Wonder Pets."
• If I'm telling a story and get too loud, Jaycee will sign "Mommy mad." For mad, Jaycee will put her hands on hips and do a sigh. It's super cute.
• We have a family friend named Rusty. When Jaycee was little, she started signing "Thirsty" whenever she saw Rusty. To this day, Rusty is still "Thirsty" to Jaycee.
• We were at a party once and Jaycee was stuffing her face with the yummy cake. The person who made the cake asked Jaycee if she liked it. Jaycee answered on her device "awful" and continued to eat the cake as fast as she could. (I was embarrassed.)
• Sometimes Elijah doesn't want to eat his dinner, so he gets in trouble. Jaycee will often say using her talker, "Elijah time out."
• Jaycee loves the name Rachael and uses the Rachael name sign from the "Signing Time" DVD series. There have been several times when Jaycee has met a baby, a woman, or an animal and asked me if their name was "Rachael." Or sometimes she'll continue to call someone Rachael even if she knows it's not right.
• We ate at Cracker Barrel for breakfast one morning. I don't remember what Jaycee was eating, but I had white gravy with my breakfast. Jaycee kept eyeing my gravy and wanted a bite. She kept signing "mashed potatoes" for the gravy. After she ate most of my gravy, she remarked that those mashed potatoes were "delicious."
• At Six Flags this summer, I rode with Jaycee on a swing ride that went extremely high. I was a little scared and may have screamed a few times. Jaycee laughed and enjoyed it. When my husband asked Jaycee how the ride was, she signed "Mommy was scared."
• Sometimes, I will whisper in Jaycee's ear a little secret and tell her not to tell dad, who is sitting next to her. She will immediately lean over and whisper in dad's ear some babblings like "bababa dadada" and then smile at me. She loves doing that!

Photo: A sentence Jaycee said on her talker

When a Talker Stops Talking

Boom!!

Jaycee was trying to take her coat off at church while holding her Bible and her communication device ("the talker") when her device crashed to the hard floor.

I didn't think anything about it. The talker has had many, many falls. On concrete, carpet, the ground, down a few steps, the talker has had many accidents, yet it has always been fine.

This is her talker's home screen when it's functioning properly. It works similar to an IPAD. You push an icon which opens up a related screen. The talker speaks whatever she pushes.

We have had Jaycee's Vantage Lite from PRC for a few years. It has only been "broken" one time when the battery stopped holding a charge. So, it had to be sent off to be repaired that one time. Overall, we have found the Vantage Lite to be very durable. It is considered to be medical equipment, so the talker is $,$$$!! Yes, you would certainly be surprised at how much these things costs.

At home, Jaycee uses total communication. She says a few words, she signs hundreds of words, and she uses the talker to supplement what she can't say using the other methods. 

Anyway, I looked at Jaycee's talker after church and noticed it was on the loading screen instead of the home screen. I knew there was a problem. I did some troubleshooting on the device with no change. The talker would not talk and it was time for lunch.

 My first thought was, "Shoot! We are having a lot of things today she can't sign."

The first problem we encountered, Jaycee couldn't pray. She pushes her prayer button before receiving her food. No talker=no prayer. During the meal, I usually push a button on her talker in an attempt to get her to converse with us about something. That opportunity was missed today. We had to stick with yes and no questions.

Then it came time for seconds on food, she was pointing and gesturing intently but I was lost. Really, I think she was saying she wanted more of everything, but that wasn't going to happen. She was pointing to her plate and making motions. I picked a great day to have tacos and salsa, both of which we use the talker to say. We finally got it figured out, but it wasn't an easy process.

After lunch, we took off the battery cover to reveal that something had come loose from the fall. Fortunately, the talker was fixed and Jaycee was back to communicating!

You don't really know how much you depend on something until it stops working. Just another thing we deal with on our special purposed journey.

 

"Talking" with Jaycee

When I talk to my daughter, our conversations are a little different. She's 7 years old but only speaks about 12 words or so. She signs, gestures, and makes noises to communicate a variety of things. For the past couple of years, Jaycee has also used a speech generating communication device. Her device is the Vantage Lite made by PRC. Here's are two short videos of conversations with Jaycee: 

Skype & the Nonverbal Child

What do you do when your basically nonverbal child wants to use the phone?

Well, first you call up grandma and let Jaycee grunt noises into the phone. Grandma asks yes/no questions which Jaycee responds with "uh." Grandma asks questions using the couple of words she can say. "Are you with mama, Jaycee?" 

Jaycee says, "mama," if she's in the right mood to respond with a word.

As grandma talks, Jaycee listens and smiles. Grandma can't see Jaycee's expressions. She hears silence. Finally, grandma says, "Is she still there?"

So, that is how the past few years of phone calls have went for Jaycee.

And this year, I discovered Skype and video calls have changed our life.

Jaycee lights up when she can hear and see her grandma. Jaycee can talk to grandma in sign, using her communication device, or words. Grandma can ask a variety of questions now that other options are available with the video. Grandma can see her facial expressions. Grandma can see if Jaycee leaves and doesn't have to ask if she's still in the conversation. The conversation isn't so one sided now.

I initially got Skype because my husband and I took a trip earlier this year. I couldn't go 5 days without seeing my kids, so Skype seemed like a great idea. But since then, I've used Skype when Jaycee says she misses her grandma. We used Skype when she was in the hospital for a week this summer. She was able to see her cousins, grandma, and brother. It was nice because her brother could see us in the hospital too through Skype. She was able to Skype with her teacher while in the hospital too!

At first, I got Skype for me, so I could see my kids. But, Skype has opened up so many doors for Jaycee. I think Skype is essential for a child who doesn't have words for the primary communication mode.

Saying "Dada"

Jaycee never babbled much as a baby. That was the first sign to me that something was wrong with her speech. She did babble "dada" around 10 months. We were so excited at first. But then she stopped and not much happened verbally after that.

She was diagnosed with childhood apraxia of speech when she was 4.5 years old. She wasn't able to speak, couldn't imitate lip or tongue movements, and couldn't imitate most speech sounds by themselves (example: s-s-s-s-s). Childhood apraxia of speech makes it difficult for children/toddlers to move their mouth to produce sounds like you and I do. Children with this desire to talk but they can't. Sometimes, they lose words. They might say a word once and never again. This has happened to Jaycee. She said "dada" a few years ago and then lost the word. It was never an easy word for her to say, so it wasn't surprising to me that she lost it. We have rarely heard it in the past few years.

Jaycee's verbal speech is slow to come. She relies on signs and her communication device to communicate.

Jaycee can say sounds produced by the lips well (m, p, b). That is why she can say "mama," "papa," and "bubba". All other consonant sounds are difficult for her. We frequently ask her to say dad but she signs it. She has given up trying to say it.

But on Sat., we asked her to say dad and she did!!!  "Dada," she said.  My husband and I looked at each other in disbelief. I immediately had her say it again and again. I wanted her brain and her tongue to remember how she said it. I didn't want her to lose the word. And so far, she hasn't. She's been great!

It's the perfect Father's Day gift to her daddy!!

Talking or some version of it

It's funny how a small chance meeting can set off a series of events that change your life.

Let's go back about 2 years ago. I decided I would attend a training on cochlear implants. I needed the hours. It sounded interesting but I didn't have a real reason to attend the training except that I'm a speech-language pathologist.

The training was taught by a speech-language pathologist (SLP) from Children's hospital. The same Children's hospital my daughter sees several specialists at. The SLP seemed so knowledgeable. I kept thinking that I should talk to her about my daughter.

I was so frustrated with my then four year old's language. She had a few basic words but signed hundreds of words. She could correctly sign colors and letters. She understood her shapes and was even beginning to sight read a couple of words. Yet, there were few words spoken after a few years of therapy from different SLPs and myself. I knew something else was going on because there was a significant difference between what Jaycee understood and what she said. This led me to one day seeing another SLP who worked in Jaycee's school district. She was considered somewhat of a local expert in our field so I talked to her about Jaycee. I told her my concerns and the signs that indicated childhood apraxia of speech. (Google this if you don't know what it is.) She assured me I was wrong. Jaycee was a typically delayed child with Down syndrome and low muscle tone. (Apparently, she missed the statistics that 10-15% of kids with Down syndrome have childhood apraxia of speech.) Be patient, she said.

I wanted to pull my hair out. Be patient while my daughter can't tell me basic needs? Be patient while she had a handful of people she could communicate with? Am I smarter than everyone else or is everyone right and I'm sooo wrong?

So, I found myself cautiously approaching the SLP from Children's at that training. Is she going to think I'm off base? I hurried up to the front to talk to the SLP before I lost my nerve. She was nice. I asked if there was any SLP at Children's who had experience with nonverbal children and could provide me some information. She put me in touch with her colleague.

Fast forward a few months. Jaycee is evaluated at Children's. She is diagnosed with childhood apraxia of speech, which was no surprise to me. That SLP gently encourages me to consider a speech generating communication device. Immediately, I resisted. I want her to talk. I want a magical treatment plan that will do something that hasn't been done in nearly 5 years now. I don't want her to carry around a device that will make her look different.

After the shocked mommy reaction, I stopped. I used my brain. I researched and read. I convinced myself this was the way to go. Ok, it's not what I planned but: no more signs, she can talk to EVERYONE now, no more of me trying to learn signs to teach her... 

Sometimes you have to recognize that someone may be smarter than you and take their advice. The process started to get her a device. That was almost two years ago.

Today, I watched my Jaycee do something amazing. During her school's tribute for Veteran's Day, she led the entire audience and school in the pledge of allegiance using her device. I sat there thinking about how far she's come in two years. Because of her device, she's had opportunities come up that have allowed her to participate with peers and in the community that would have been otherwise impossible. Every time she orders at a restaurant using her device or answers a question someone asks her, she's connecting with people and opening their minds about her.

It's amazing to think that one small act of courage to talk to an SLP at a training resulted in Jaycee doing a regular kindergarten school act today.