Cayden’s New Life… 28 Days of Cayden, Day 28

Wow! We made it to Cayden’s birthday, with only a little stress. This normally chaotic and stressful time, was definitely eased by this journey of sharing. I hope I have blessed you with my stories, and helped you to see that ANY life is worth living no matter how short, or how challenged, or how trying.

DSCF1777Without Cayden, I would be a different person. Not sure I know quite how, but I am sure my life would have taken a different turn. Like I shared in yesterday’s post, if he had been born ‘normal’ I might be a working mom, running from place to place, trying to juggle the activities and sports of 3 kids, while I did theatre design work on the side. If he had just died in utero, I might have been changed, but differently than I was by getting the blessing of spending 4 ½ years with Cayden. If he had not died, and still was with us, my life would still be changed, but perhaps not as much as I might imagine. It’s hard to tell.

I try not to think about the ‘What-if’s?’ too often as they can bring despair and unbridled grief. Last night, I had the ‘Why-me?’s along with the ‘What-if?’s and it isn’t a pretty place to be. It’s tearful and heart wrenching, that act of looking backward, and doesn’t really help my soul. So instead, I look forward, as we are commanded by the Lord in Isaiah 43: 18-19: “Forget the former things; do not dwell in the past. See, I am doing  a new thing!”

So I am continuing to walk along this new path that God has set before me, doing my best to follow his lead. Some days I get off into the brambles, and I pay for it with some spiritual ‘poison ivy’ that I might have avoided if only I had been obedient. I strive to use God’s Positioning System for my life, allowing Him to have the stress of leadership, while I am His compliant servant. It is a challenge for me to be compliant, that’s true, but I’m working on it.

So this is our ending place, for now. I need to close the memory banks & photo books, to allow my heart to heal again. It’s been a month of raw emotion, of remembering the pain, the stress and the joy. There is much more to say, but that can wait for another time.

I want to close my series with a poem I wrote many years ago, when the wounds were still raw, and the pain was almost too much to bear. I wrote it for Skylar, to try to ease her pain, and to explain to her why it was okay that Cayden was gone. Ideally, this will someday become a children’s book, perhaps with my own illustrations, but until then, I feel that I am healed enough to share it with the small world of readers I have here on my blog. No eyes but my own have seen this until now.

Enjoy, and know I appreciate your prayers, your praise is humbly accepted but unnecessary, as I know I am doing His work, by sharing Cayden with you.

Shira

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Cayden’s New Life

Skylar asks me, “Mommy, why did Cayden have to die?”

I answer, “I don’t know, dear, only God knows really why.

I know only He knows how our lives are going to change,

But it’s Cayden’s life that’s different now, in so many ways.

Here on earth, our Cayden, he couldn’t do a lot.

He couldn’t hear, he couldn’t walk, and he couldn’t really talk.

Cayden spent his days mostly strapped into a chair,

Waiting for us to push him so he could move from here to there.

But now, up there in Heaven, Cayden gets to run and play!

His legs work great and he can sing & dance the day away!

Here on Earth, our Cayden, he couldn’t really eat,

He needed all his food pureed into a mushy meat.

Now he’s tasting Heaven’s food, (I bet it’s oh-so-good!)

Everything is wonderful and he can chew it too!

When he was young, your brother, he saw things pretty bad,

The sunlight hurt his eyes if he forgot to wear a hat.

Now he sees the crystal city and streets of gold — so bright!

There is no sun in Heaven, because Jesus is the Light!

Cayden was born deaf, you know, he couldn’t hear a thing,

But now, in Heaven, he is always hearing angels sing.

Cayden couldn’t speak well, only said a few small words.

He needed a computer to make his thoughts be heard.

In Heaven, Cayden’s voice, I’m sure, rises high above the rest,

Singing praise to Jesus Christ the King in total happiness.

On Earth, your brother Cayden often had a lot of pain.

We did a lot to help him but he often cried in vain.

In Heaven, Cayden cries no more and he feels no more pain.

He never has to die again, or face any more strain.

I know you miss your big brother, we all miss him too.

I miss his smile, his giggle and his sloppy kisses –ew!

Now Cayden is with Jesus, and his body is brand new!

He finally gets to do the things he never got to do:

He gets to sing, he gets to dance — in freedom and in praise

And we will get to see him soon and forever spend our days,

With Cayden and with Jesus, our Holy Savior, Christ,

If only we believe in Him and ask Him in our lives.

Then we can go to Heaven too — for all eternity,

And we can live forever there — a happy family.”

By Shira Arnold

C. 2008

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A SuperTalker for A SuperListener… 28 Days of Cayden, Day 15

 

Cayden switches on chair

You can see here we have 2 micro switches on each arm of his wheelchair. We used velcro cable ties to attach them, and later the terry hairbands worked even better on the arms. You can see all the wires feeding from the switches up his chair into the backpack to attach to his SuperTalker. That was cranked up very loud so he could clearly hear it, but he had to know which page was in the talker so he could communicate correctly. Lots to process and remember.

As I shared in yesterday’s post, (Day 14) Cayden quickly progressed through the switches, and it became obvious to me that we needed a better system. The constant switching of the papers in the SuperTalker was tiresome & really didn’t happen when it needed to. Instead we ended up using the pages on their own as an eye-gaze choice selector system.

We used these frequently for choosing toys, clothing or food. I would have a page with 4 options on it with icons for different toys (or shirts or lunch foods). I would hold it up to him & he would look at the page, then select one with his eyes & smile. I learned to easily see which one he was choosing by where he was looking. If none of the choices were acceptable to Sir Cayden, then he would look away without smiling & a “Seriously, these are my only choices?” look on his face.

SuperTalker-2009

This is the Super Talker, we usually used the 4 choice page for hands-on, and 8 icon page for eye gaze.

 

We learned that this system worked for any number of things & instead of using pre-printed pages, I moved on to small individually laminated icon cards (about 2”x2”). These were stored in a binder in business card holder sheets. This way, I could position them on his tray in any combination, & separate them enough to see his eye gaze selection easily. It worked wonders.

 

We used this method with his hearing impaired specialists to start to test his comprehension and vocabulary. He went from being able to select from 3 items, with one descriptor, to five items with 3 descriptors in just a few months, once we learned his selection method.

Imagine a table with 3 differently colored balls. We would say, “Cayden, show me the blue ball.” He would look at each of the balls in turn, and then… wait for it… wait… look and hold his gaze on the one he was choosing, usually with a smile, meaning “Yes, that’s it.” Then we would do it again, this time saying, “Show me the red ball,” or “Show me the big ball.” (in auditory training they suggest you not use the W question words, because children can become confused by the question words, and forget the real question. So you would always phrase the question in a command. (Show, point, pick, choose, grab, move).

As he progressed we would then have 5 balls, of different sizes, textures & colors. So we would say “Show me the big blue ball.” or “Show me the small, bumpy red ball.” You could say Touch the green ball,” or “Grab the fuzzy ball,” but these involved motor skills that were too complicated for C to do when working on this task. He COULD do it, but then the wait time for him to find the fright one, then force his brain to make his arm move to grab the ball, WOW! Waiting for the answer was so long he would sometimes forget the question & so would we!

I won’t forget the day when he did 3 descriptors with 5 objects. It was a collection of yellow vehicles. (all yellow). Dump trucks, crane, car, truck, bus. Some had things on them. So we would say, “Show me the dump truck with the blue duck. “ Usually you do this trying to trick the child, so we had a dump truck with a yellow duck as well. And a pick up truck with a blue duck. He selected easily. Then we upped the ante. After re-arranging the cars & animals we said, “Push the dump truck with the big yellow duck.” & he did. “Pull the dump truck with the small green duck” & he did. “Dump the duck in the little yellow truck,” & he did. He had mastered this skill. We couldn’t trick him! AND he was so motivated that he even moved his hands to make selections. Oh what a day!

Cayden understood this skill & it showed that he had really mastered hearing the differences between duck and truck, push and pull and dump. He could do it with objects & he could do it with pictures as well. This was a BIG accomplishment for Cayden, as a hearing impaired child,  as a visual impaired child, and as a child with holoprosencephaly.

I have two funny stories to share. It was summer so we had a summer school hearing impaired teacher coming to work with Cayden who was not his usual teacher. She didn’t know him very well, but was working hard to keep him moving forward on his skills. We began working on the selection game. We were working on position words (under/over/on/in/between, etc). The teacher had brought a set of small plastic dolls & furniture to work with, which seemed fine and useful for the task. But Cayden did NOT want to participate. We tried him in a different room. We tried him in a different chair. No go. Wasn’t going to play. Finally, I said, “I think he doesn’t want to work with these because they are DOLLS & he is a BOY and he wants to play with cars or balls or dinosaurs.” As soon as we got his ball bin out, he did his assignment without a mistake. What a stubborn & smart BOY!

books

The other major memory I have of him ‘showing his smarts,’ was when we were reading a new book called “Red Light, Green Light,” by Marjorie Wise Brown. It is a lovely book about animals, people & vehicles & where these things ‘live’ at night. The car goes in the garage. The cat sleeps in the tree. The mouse sleeps in the hole. There were at least 12 items that we read about, first they come out of their home, drive around, hit the red light ‘Stop!’ & the green light ‘Go!” & go home at night. So after one reading, I showed him some matching cards I had made. He had to pick the pairs for the things, matching the item to the home. After one reading, he correctly placed all the items in their home. This was huge to me & really gave me hope on his long-term progress. He got it. He was definitely NOT a vegetable, & by this point I really believed he was not even somewhat learning impaired.

He was hitting his achievement goals, passing all expectations. We started to tease about needing to start saving for college for him, he was so smart. I really had high hopes for his future!

C big brother!Don’t give up on your kids. If my deaf, blind, mute, lame, brain challenged son could do this… yours can too. All kids have potential, you just have to keep searching to find their gifts, find their communication method, find their passion. Even the most challenged kids have a reason for living & a passion that ignites their curiosity. Cayden’s was cars, dinosaurs & trains, NOT dolls & furniture. It wasn’t that he couldn’t do the task, he just flat out didn’t want to with those particular items. Find their interests. Even if it means reading books about legos every night for a year, read them. Buy the legos. Buy the toys. Watch the movies. Find ways to learn that ties into that interest. Find the entry way into their brain by finding the entry to their heart and interests.

No matter how hard we worked or all the progress Cayden made, college was not meant to be. Turning 5 was not even meant to be. We humans keep brainstorming options and plans, but God’s purpose prevails. (Proverbs 19: 21 MSG) I had Cayden figured out. I had options & big plans, but they were not part of God’s plan for Cayden’s life, or for mine. I was meant to be a mom without this child, and he was meant to spend a little while waiting for us in Heaven.

I can’t wait until I get to see him & his great smile again!

Shira

 

 

 

See no Evil, Hear no Evil, Speak no Evil… 28 Days of Cayden, Day 12


Cayden was blind. Cayden was deaf. Cayden was mute.

In Exodus 4:11-12 (MSG), God said, “And who do you think made the human mouth? And who makes some mute, some deaf, some sighted, some blind? Isn’t it I, God? So, get going. I’ll be right there with you—with your mouth! I’ll be right there to teach you what to say.”

God made Cayden the way HE wanted him. Even though much of what Cayden said to people was unspoken,  HE helped Cayden learn what needed to be said. And He put people in our lives who were wonderfully skilled & taught us so much about so many things.

Cayden wanted to communicate with us and tried very hard to make his voice heard. He had a variety of vocalizations that included whining, crying, yelling, squealing, & speaking.

He would learn new words in speech therapy but keeping them in his vocabulary was difficult. His low tone in his neck & chest and mouth just made the speech process difficult. Even with that challenge, Cayden did have a few consistent words. He could fairly easily say the ‘oooo’ sound. So any word with that sound was great. Favorite phrases included:

DSCF1402Go Moo! (when he wanted to go see the cows, of course.)

Go Blue! (when he wanted his new blue walker).

Go Vroom! (while watching NASCAR).

Go Out! (when he wanted to swing or go play outside).

Boo. (meaning food)

Boo goo (clearly meant brother)

Choo Choo (train of course).

One time at therapy he clearly said “Blue Boat.” but just once.

Part of learning speech sounds for deaf and hearing impaired children is learning a variety of different sounds and rhythms. Cayden learned a lot of these too. AaaaaAAAAaaaa (going up and down, was the sound for airplane). Aggg (again). BAAA (sheep). Cow. Clown. Daah for Dad. Daw (for duck). Doggie.  Elmo. Fun. Go. Gobble. Gone. Gorilla. (he really did clearly say that!) Gooood. Ha ha ha. (Clown sound).  Hop. Hello. HO, HO, HO (Santa’s sound). Hoh (home). In. Loo Loo (noodles). I Loo you! (makes a mama’s heart melt!) Mom. More. No. Now. Noel (while singing christmas carols). OOO-ooo-OOO (police siren sound). Out. Oink. He would do pub-puh for boat. Red. Rocco. (Rosco, our dog). Uh -Oh! Up. Uh-huh. Woo-ooo, Wooo-ooo (fire engine, different from the police siren). WHEE! Yeah.

How do I remember these so clearly? Thankfully in 2006, I made a scrapbook that listed all his current vocabulary. I am so glad I took the time to do that. It is such a blessing to me now.

C talking

You can tell by his mouth, he was chatting about something!

This list was about the full extent of his vocabulary. When Cayden was around 3, we could tell, just this much vocalization was difficult for him, and his breath support was not strong enough to support longer sentences. So we began to use assistive tech devices to expand his communication & this slowed his speech development. It was perhaps not the ideal outcome, but he was able to share his thoughts more and more.

As we moved further toward augmentative communication devices, he stopped speaking with his voice so much. He did still talk, but it never really progressed much further than  simple 2 word phrases.

Easter Sunday

Proud brother, standing tall! Easter 2007

 

 

Even though it was very difficult for him, he would still use his voice. On his last Easter Sunday, singing in church, he clearly said “Alleluia!” I believe Cayden truly understood the magnitude of Easter & the resurrection.  Every Easter you will see me crying tears of joy, as I vividly remember holding Cayden, when clear as a bell he said “Alleluia” in my ear. Now he is singing heavenly ALLELUIAS with the angels. Praising the Lord in a full vocabulary.

Sometimes he will talk to me in my dreams. I hear his new full sentences, and they are beautiful moments of insight into his current life & into the eternity I will be able to spend with him in Heaven.

See you soon, Mr. C! We’ll talk nonstop!

Shira

Talking with my hands… 28 Days of Cayden, Day 11

When we learned that Cayden was deaf, we decided that signing was going to be a priority (at this time we didn’t know the extent of his visual impairment, so we proceeded as if he could see.) I had already done the research on Baby Signs and the benefits of signing  with small children in aiding communication, so this was actually an easy mental shift.

With the help of C’s early interventionist for the deaf and hard of hearing, we started learning ASL. (american sign language). We had decided to continue to use the Total Communication method (using all forms of communication input). We were taught to constantly sign and speak to him, getting him both forms of communication at once. He could see the signs, lip read &/or hear the words. More avenues of input = more options for communication.

So I would narrate and sign all. day. long. to him.

I would sign while feeding him. Sign while reading to him. Sign one-handed while driving with him. (I would sign praise songs to him in the car on our long trips). I was always signing, learning with him, growing our ASL vocabulary together. Ask me any sign for animals, colors, beginning words, I had it down. Adult words and more complex phrases, not so much. But we were communicating.

Where did I learn sign language? Well, our HI interventionist taught me the basics. She had a video for me to watch that discussed how to sign with a deaf child: be sure they are looking at you, go slow & sign clearly. Use simple signs for simple words. Use a one word language at first, just like children learn to talk. We discussed my attending a sign language class at the community college, but decided that I would consider that if I found I was struggling with the simpler avenues. Adding another thing to my already packed schedule was not ideal.

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My favorite resource for learning ASL was a book I found called, “Talking with your hands, Listening with your eyes.” This book had the signs clearly pictured and explained, and grouped by category. So when we were reading a book about animals with Cayden, I would study the section on animals to prepare myself. Or Colors, or body parts. Each sign had a simple reminder clue that really worked well for me to picture the ‘why’ behind the signs. I highly recommend this book!

After we had been signing for a while, Cayden began to sign back. He learned the signs for finished (2 hands brushing down his chest), milk (squeezing your hand as if milking a cow), more (2 hands fingertips together). Those really were the important ones, and they helped him to begin to tell me what he wanted. I don’t have any pictures of him signing, so you’ll have to believe me that he did!

One of the other benefits of talking with your hands, is that the baby sister can learn too. Skylar was proficient in signing and really used it well. It helps with typically developing children as well as deaf children, since they can sign long before they can speak, and it helps to aid in their early communication. Skylar never really hit the terrible twos, I believe because we could understand her clearly signed needs so tantrums weren’t necessary.

sky sign fish

Skylar signing “fish”

As the kids got older, we enjoyed using Signing Times DVD’s and PBS show. This is a well-made, kid-friendly show that teaches basic vocabulary, simple kid songs, and has other children signing to the viewers too. The family who stars in the show created it because one of their children was deaf. I think that is great!

Communication is so important, and signing was a simple thing to learn to find a way to communicate with our child. Did you know that signing has even been around since Biblical times? In Luke 1, Zechariah was struck dumb due to his disbelief that in his old age, he would have a son with his barren wife, Elizabeth. He had an encounter in the inner sanctuary of the temple with the angel Gabriel, who shared this news with him. Luke tells us in Chapter 1:22: When he (Zechariah) came out, he could not speak to them. They realized he had seen a vision in the temple, for he kept making signs to them but remained unable to speak. Zechariah was unable to speak until his child, John (to become John the baptist) was born.

When their child was born, verse 59 says, “They were going to name him after his father Zechariah. but his mother spoke up and said, “NO! He is to be called John.”

They said to her, “There is no one among your relatives who has that name.”

Then they made signs to his father, to find out what he would like to name the child. He asked for a writing tablet, and to everyone’s astonishment he wrote, “His name is John.” 

Signing is a valid way to communicate with either deaf or mute people. It is a true language, and it requires study and practice to both talk in sign and to read sign. I can do many signs, but I have a hard time reading signs, especially by people who use it all the time, and sign very quickly. Letter spelling is particularly hard for me to read. The less I practice, the more I forget. It takes two people to communicate, and using sign language is no different.

DSCF1408After Cayden got his cochlear implant, they told us to talk nonstop to him. The more auditory input the child can get the better. Most CI recipients use a speech only method, to really kick their sense of hearing into high gear. They want no distractions… turn off the radio, turn off the tv, just talk with them. Constantly. Narrate your day. I would have Cayden by my side in whichever chair we had at the time, sitting with me, listening.

It became so natural to me, that I still find my self narrating… “We are taking the dinner out of the oven. The oven is hot. Hot, hot, hot. Don’t touch the hot oven. The oven cooks the dinner. Yum! Doesn’t that dinner smell delicious! When it cools, we can eat the yummy dinner.We are having chicken for dinner. Chickens say ‘cluck, cluck, cluck. Can you say “cluck, cluck, cluck?” And so on. That was my daily ritual for years. After C died, I still did it. It was a habit, and I think I still talked to him after his death, to keep him closer to me. I may not speak my narrations out loud often these days, but sometimes you will see me moving my mouth, talking in the store, as I share my daily life and rituals with my sweet, special son.

Shira

 

 

I believe narration is an excellent way to introduce babies and children to language, because it does not use baby talk, but full ‘adult’ sentences and language. And I believe that my training and habit in narrating, used on Devin, made him an early talker, speaking full sentences by 9 months.