It’s been 10 years….

Cuddling in BedIt’s been 10 long years of mornings since I discovered Cayden, our firstborn son, dead in his bed at 4 ½ years old. 10 years of tears. 10 years of missing him daily. 10 birthdays, 10 Christmases, 10 Easters, 10 Halloweens, 10 years of life he was not able to live. 10 years I was not able to be his mom. And I loved being Cayden’s mom.

IMG_1238He would be 14 ½ now. That is hard to fathom. I wonder so often what he would be like, what our lives would be like. And interesting enough, it is never very different than what it was then. That is how it works with holoprosencephaly. The kids don’t really have a chance to grow up. Their broken brains and broken bodies betray them, not allowing them a chance to do the things most other kids get to do.

Cayden was a bit different though, on the mild side of the HPE spectrum, and he was making excellent progress. He was getting better at using his speech-to-talk device. He was beginning to add weight from better chewing and swallowing, so he could eat more real, calorie-full food. He was starting to figure out how to race around in his power chair. Cayden was getting stronger in mind and body, and we were excited and encouraged at his almost daily improvements.

I perhaps have been quieter on the blog lately, and in general about Cayden, as people might suppose, as his memory fades. But that is not the case. Actually, I probably talk about him more than ever, as his siblings inquire more and are able to hear more and more of his story. I have an outlet for my broken heart and it is into my other kids. Which is just who needs to hear about him most, I think.

Cayden Power Chair 8:6:07

We all still miss him daily and often discuss what and how our lives would be impacted by his 14 year-old boy self still being here. Would we be able to have the other kids in activities like they are now? Or would our days circle around Cayden’s therapies and programming? Would we still be homeschooling? Would we still be able to be active in the things they like? Maybe, maybe not. But we would have other things we like and enjoy that C could do: a bike ride/power chair ride on the greenway instead of a mountain bike trail, running a 5K with Cayden in a running chair, riding the elevator instead of taking the stairs as we go on our homeschool field trips.

Happy Cayden

Things would certainly be different, but I think that at the core, our family dynamic would still be the same, if Cayden was still alive with us, rather than only here in memory. We often comment that he is with us, in his ever-present butterflies, that follow us around. We make efforts to remember him, and think of what he would like about an outing, or event, or just the chatter at the dinner table, to share him and his glow, and his special wing flap, with his siblings.

 

I want to get real a minute, for the grieving moms out there, for the HPE moms out there who are so, so scared of the aftermath of death. We miss him, certainly, but the horrible, gut wrenching, never-ending pain can and does fade over time, as it has for us, when faith takes over.

 

But the guilt, and the what-ifs are always there, if you allow them to be, and if you allow the devil to find a crack in your faith. It is a struggle. It is a HARD struggle. He finds your guilt, your what-ifs and makes it seem as if you could have changed the past, just by one simple act. Just doing XYZ, would make things oh-so-different. Just getting a trach. Just having a night nurse. Just dealing with the beeping of the apnea monitors constantly going off.

 

I have to force myself to remember that those what-ifs, those choices made, were made in great prayer and great consideration at the time. They were the right choice at the time, and no devil on my shoulder whispering in my ear for years, makes them the wrong choice. Perhaps things would have had a different outcome, but we don’t know that the different outcome would not lead to the same finality of death. It’s in God’s time to call us home, after all.

 

The thing I think about the most, as time has passed and the most soft spot, the most guilty spot, I have is, “Why did I not even THINK to perform CPR on him?”

 

I have beaten and battered myself up on this. The devil has laughed and laughed and laughed as I struggle with this. He keeps me down as I think about this, replay that day in my head. He brings it up when I miss him the most, when I’m at peace about Cayden’s passing, or when I’m just sitting around.

 

But my answer, then and now, was this. “WHY?”

What was there to gain?

In my heart, in that instant of discovery, I knew Cayden was gone.

In my heart, in that instant of discovery, I knew Cayden was better off.

In my heart, in that instant of discovery, I knew it was not what I needed to do.

 

But the years slowly go by, and I still question myself on this.

 

My response, then and now, is “WHY NOT?”

The why not lies in Faith.

The why not lies in truth, knowing Cayden is in Heaven.

The why not lies in knowing that Cayden was perfectly healed.

The why not lies in knowing that this was to be his destiny from before he was born. it was just a matter of when.

The why not lies in finally knowing the answer to when.

 

Cayden had a very broken body. His brain was malformed, in my womb, at the earliest stages of pregnancy, due to a genetic translocation. It was not my fault, nor Joey’s, but a design of his Creator. Not only was his brain malformed, but so were his eyes, his ears, his arms, his toes, his digestive system, and what proved fatal, his airway. In other posts, I share all his specific issues, but we knew Cayden was the owner of a perfectly normal soul in a broken, mixed-up body. We knew Cayden was most likely destined to die young, the doctors said he wouldn’t even make it hours past birth if he made it that far, and we were blessed to parent him for 4 1/2 years.

DSCF1307Cayden was the sweetest, most gentle, most happy kid, for having such a non-responsive body. He loved his mama (for food), loved his daddy (for sleep), loved his sister (for giggles), loved his pets (for soft fur), loved his church (for music). He tried so hard to improve and grow and make progress. He wanted to walk, he wanted to eat, he wanted to talk. And he was working his way towards that. Big, big strides were made in January 2007. We were happy. We were so excited for the future, for better days for Cayden.

 

So when, in that instant of discovery, I found him lifeless, I knew it was the wrong thing to do, to revive him.

 

To revive anyone after being without oxygen for a period of time, can cause life-long struggles with brain damage. To revive Cayden, who already had a malfunctioning, partial brain… what would that mean for him?

Regression of all the things he was learning, more frustration, more anger?

Regression of his spirit, trapped even more, in an even more broken body?

Any damage to his fragile brain could have taken away even the most basic skills he was learning, and perhaps truly make him the vegetable the doctors said he would be.

 

I couldn’t do that to Cayden.

In my mama’s heart, in that instant of discovery, I knew.

I knew Cayden my lame child, was dancing with Jesus.

I knew Cayden my mute child, was praising the Lord.

I knew Cayden my wheelchair bound child, had run right up that path to Heaven.

I knew Cayden my broken child, had been fully healed.

I knew God had answered Cayden’s prayer, and our prayers, and the prayers of many faithful prayer warriors.

 

God called his name, and Cayden ran.

 

Shira

 

One more thing…. God has an angel that whispers on my shoulder too. At times of grief, it tells me where to find hope. One such verse I have been given is Psalm 21, for 2/1, the date of Cayden being called home. I’m not sure if I have shared it or not before, but it brings me great comfort from Cayden in times of pain. Sunday, I found it again, and again, it brings me peace. I simply replace the references and pronouns to “the King,” to Cayden.

Psalm 21: 1-6

O Lord, in Your strength Cayden will be glad,

And in Your salvation how greatly Cayden will rejoice!

You have given Cayden his heart’s desire,

And You have not withheld the request of Cayden’s lips. 

For You meet Cayden with the blessings of good things;

You set a crown of fine gold on Cayden’s head. 

Cayden asked life of You,

You gave it to him, 

Length of days forever and ever. 

Cayden’s glory is great through Your salvation,

Splendor and majesty You place upon Cayden. 

For You make Cayden most blessed forever;

You make Cayden joyful with gladness in Your presence. 

 

 

And Sunday at worship, we sang Glorious Day by Passion . In moments like this, I hear Cayden reminding me that he is ok, and he is in the presence of God.

I was buried beneath my shame
Who could carry that kind of weight
It was my tomb
Till I met You
I was breathing, but not alive
All my failures I tried to hide
It was my tomb
Till I met You
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
Now Your mercy has saved my soul
Now Your freedom is all I know
The old made new
Jesus, when I met You
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
I needed rescue
My sin was heavy
But chains break at the weight of Your glory
I needed shelter
I was an orphan
But You call me a citizen of heaven
When I was broken
You were my healing
Your love is the air that I’m breathing
I have a future
My eyes are open
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
Songwriters: Sean Curran / Jason Ingram / Jonathan Smith / Kristian Stanfill
Glorious Day (Radio Version) lyrics © Sony/ATV Music Publishing LLC, Capitol Christian Music Group
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Picturing Heaven… 28 Days of Cayden, Day 26

While I was pregnant with Cayden, I was lucky enough to find a great women’s Bible study, sponsored by MRO. They were very welcoming to me, and as any new friends are, excited to see that I was having a child soon. How difficult it was to say, as my introduction to this group, that ‘Yes, I was expecting, but not it was not exciting or necessarily happy. That instead, it was highly likely that my child was going to die before his birth, or within hours after. By the way, aren’t you glad to meet me?’

Their smiles turned to concern when I voiced my oh-so-desperate prayer request that we be able to greet him alive, and maybe have a few hours to spend with him. And they wrapped their arms and hearts around me, and Cayden, and have stayed with me since.

They were with me at the hospital, during those 9 days in the NICU, bringing food and gifts. They prayed for us, loved on us as much as they could. And as Cayden grew they loved on him so much. They fought over who got to hold him first. They never complained about caring for him so I could go to the study. They treated him like all the other kids, and let him play and sing songs. And they were there for his memorial service, spending hours inflating 250 balloons, so we could have a balloon for each week we had spent with him. IMG_0019.JPG

During the year Cayden was 3, the study was on Heaven. Our wonderful Bible study leader, ‘Miss Jackie’ Pegram, planned this wonderful study on the beauties and wonder of our Eternal Home. I found it riveting, so interesting, to see this place brought into vivid focus and rainbows of color. Looking back, it feels like this study was meant for me. It was preparing my heart for the loss of my son. Without this knowledge, I am sure that Cayden’s passing would have been much more difficult, but knowledge is power. Actually, knowledge is peace in this instance.

Miss Jackie

Miss Jackie, explaining her Heaven pillow at Cayden’s balloon release. One side tells of what IS in Heaven, the other side tells what IS NOT in Heaven. It is a teaching tool that we used often to share the tough concepts of Heaven with Skylar.

Miss Jackie is such a wonderful teacher and her lessons brought us all over the Bible. She can explain the most difficult subjects in a way that they just make sense. Many of these notes come from her teaching, or are my take on her explanations. I hope they enlighten you some about Heaven, and please allow for grace in your critique.

Why concern ourselves with Heaven? How do we know it is real? The Bible discusses it again and again. I will share a few things I learned about Heaven, and why I feel certain that Cayden is in a better place.

…our citizenship is in Heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body. (Phil. 3: 20-21)

Heaven is where our citizenship is, where we belong, and where we will receive new, glorious bodies. But we will not become angels, we will be at home with the angels.

Therefore, angels are only servants—spirits sent to care for people who will inherit salvation. Hebrews 1:14

 So much of the beauty of the physical Heaven is found in Revelation 21 (NLT)

3 I heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them.

God himself dwells with man.

4 He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

There will be no more death, sorrow, crying or pain.

And the one sitting on the throne (Jesus) said, “Look, I am making everything new!”

We will have new Heavenly bodies!

And then he said to me (John), “Write this down, for what I tell you is trustworthy and true.” And he also said, “It is finished! I am the Alpha and the Omega—the Beginning and the End.

We can have confidence that this is truth, for Christ himself tells us through John.

We also see that anyone who is thirsty, (who seeks Christ), and who prevails in their faith until the end, will be there:

To all who are thirsty I will give freely from the springs of the water of life. All who are victorious will inherit all these blessings, and I will be their God, and they will be my children.

Who will not be able to enter Heaven & instead will find eternity in Hell?

“But cowards, unbelievers, the corrupt, murderers, the immoral, those who practice witchcraft, idol worshipers, and all liars—their fate is in the fiery lake of burning sulfur. This is the second death.”

Lets pause for a moment & refresh. How do we get there?

John 3:16 tells us: For God so loved the world, that He gave His one and only son, that whosoever believes in Him shall not perish, but have eternal life. We need to believe that Jesus is the Son of God.

John 14:6 repeats this: Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.” Belief in Christ is the only way to get to Heaven.

 

Now for the description of Heaven, I believe at times it is just too beautiful to put accurately into words:

Then one of the seven angels …said to me, “Come with me! I will show you the bride, the wife of the Lamb.”

10 So he took me in the Spirit to a great, high mountain, and he showed me the holy city, Jerusalem, descending out of heaven from God. 11 It shone with the glory of God and sparkled like a precious stone—like jasper as clear as crystal.

A city of glass! Sparkling like crystals!

12 The city wall was broad and high, with twelve gates guarded by twelve angels. And the names of the twelve tribes of Israel were written on the gates. 13 There were three gates on each side—east, north, south, and west.

The city is laid out in a square, with three angel-guarded gates on each side, each gate made of a single pearl, and named for a tribe of Israel (the tribes were named after the sons of Jacob).

14 The wall of the city had twelve foundation stones, and on them were written the names of the twelve apostles of the Lamb.

15 The angel who talked to me held in his hand a gold measuring stick to measure the city, its gates, and its wall. 16 When he measured it, he found it was a square, as wide as it was long. In fact, its length and width and height were each 1,400 miles.

My teacher said that based on this square footage, (1,400 miles cubed) if every person who ever lived made it to Heaven, we would each have 75 acres! This is no small city! It is a real, measurable, literal, physical place.

17 Then he measured the walls and found them to be 216 feet thick (according to the human standard used by the angel).

18 The wall was made of jasper, and the city was pure gold, as clear as glass.

Walls that are 216 feet thick! That is approximately 2/3 the length of a football field, and that is just the outer wall, made of jasper. The city is made of clear, glass-like gold.

19 The wall of the city was built on foundation stones inlaid with twelve precious stones: the first was jasper, the second sapphire, the third agate, the fourth emerald, 20 the fifth onyx, the sixth carnelian, the seventh chrysolite, the eighth beryl, the ninth topaz, the tenth chrysoprase, the eleventh jacinth, the twelfth amethyst.

Beauty is so abundant here, that what we consider rare and precious, they lay their foundations with. We would use gravel and cement, they use gemstones!

21 The twelve gates were made of pearls—each gate from a single pearl! And the main street was pure gold, as clear as glass.

Again, what we consider precious, in Heaven is commonplace. Heavenly treasure lies not in precious stones or gold, but they see it in the Lord. Perhaps we too should change our perspective to that and not strive for gold and jewels, which are really just Heavenly building materials.

22 I saw no temple in the city, for the Lord God Almighty and the Lamb are its temple. 23 And the city has no need of sun or moon, for the glory of God illuminates the city, and the Lamb is its light. 24 The nations will walk in its light, and the kings of the world will enter the city in all their glory. 25 Its gates will never be closed at the end of day because there is no night there. 26 And all the nations will bring their glory and honor into the city.

Even though there are these glorious pearly gates, they are never closed because there is no fear of night, no fear of evil being allowed to come through the walls. You must be written in the Book of Life (by belief in Christ) in order to enter.

27 Nothing evil will be allowed to enter, nor anyone who practices shameful idolatry and dishonesty—but only those whose names are written in the Lamb’s Book of Life.

The physical description continues in Revelation 22

1 Then the angel showed me a river with the water of life, clear as crystal, flowing from the throne of God and of the Lamb. It flowed down the center of the main street.

There is a beautiful, clear river flowing through the center of the city streets, coming directly from the throne of God. Living Water, perhaps?

On each side of the river grew a tree of life, bearing twelve crops of fruit, with a fresh crop each month. The leaves were used for medicine to heal the nations.

A redeemed Eden, complete and perfect. A tree of life with never ending crops of fruit.

No longer will there be a curse upon anything. For the throne of God and of the Lamb will be there, and his servants will worship him. And they will see his face, and his name will be written on their foreheads. And there will be no night there—no need for lamps or sun—for the Lord God will shine on them. And they will reign forever and ever.

No more curses, no more sin. No night, no darkness, so no need for lamps or the sun. Heaven has the SON instead!

 

If you don’t think this sounds like a better place, than our polluted, crime-filled, sickness filled planet, I’m not sure I can help you. I think it is wonderful, and I’m sure Cayden thinks so too. So if you ask me “Don’t you miss him?” Yes, of course I do! But I firmly believe, based on this study we did years ago, that Cayden IS in a better place. A place so beautiful I, in my creativity cannot begin to fathom it. A place even our wildest dreams cannot comprehend. A place where kids who were earthly bound by handicaps run and dance and sing and play. A place I cannot wait to see.

Not so long ago, at church, our worship team was taking a musical segue between praise songs and began playing “Where the Streets Have No Name.” It had been a rough morning emotionally, and I was missing my kid! Suddenly, I was transported to a mini-visit with Cayden, where he was beaconing me to join him as he showed me around this crystal city with golden streets. As the song lingered, I had this lovely vision of our reunion & Cayden saying “I can’t wait to show you around, Mom!” I can’t wait either!

Shira

 

Heaven Bracelets

My Heaven Bracelets & Companion Bookmark.

While learning about Heaven, I was inspired to make a bracelet I call the ‘Heaven Bracelet.’ It shows a little of the beauty of Heaven, and serves as a reminder to us to look forward to our eternal home. I sold them for a while, and still have some available, if anyone is interested in purchasing any, please let me know. Each part of the bracelet represents a little piece of Heaven, from the 12 Gates of Pearls, the crystal city with the golden streets, and the 12 gemstone foundations.

 

If you are interested in going deeper in study on Heaven, I strongly suggest reading the book “Heaven” by Randy Alcorn. He goes deep into scripture to answer the most common questions about Heaven & it really helps to see what common ideas are myths and what are truths.

A few of C’s favorite things… 28 Days of Cayden, Day 25

I thought I’d change gears and write some fun stuff about Cayden. I’ve said how he was such a fun and super kid, but he really was! He was a sweet sweet boy who definitely had personality. His personality really blossomed when he began to hear, and just kept getting bigger!

Mommy & C

Mommy & C, last Mother’s Day as an only child.

He loved his Momma. I know, I put myself first. But really, Cayden was a momma’s boy! He was always with me, more than a typical child would be, and really I loved hanging out with him. I liked watching his wheels turn as he tried to learn new things. Watching him persevere until he could do something new. I really tried to treasure every moment I had with him, as we knew from the beginning he was probably not going to be our child forever. Ironically, now he is a forever child, forever 4.

upside down

Silly play with Daddy was always good for giggles!

Cayden loved his Daddy too, but in different ways. I said before, Daddy was for sleeping and napping. He was for watching NASCAR, and for playing airplane. Daddy was definitely NOT for eating. He started this behavior after Skylar was born and needed her newborn attention. Cayden realized that if he didn’t eat for Daddy, Mommy HAD to come and spend some time with him to feed him.  I would feed him a few bites… no problem. Joey would pick up the spoon to feed him a few bites… no eating! He literally would snap his mouth shut and turn away. It was somewhat funny to me because he was communicating loud and clearly. Joey, however, thought it was more frustrating than funny.  Don’t tell me that kid wasn’t smart! This stubbornness lasted for at least a year or more. Really. No food with Dad!

Elmo coloring

Working hard on his Elmo picture while standing.

Cayden loved to color. After we got his stander, the favorite activity by far was coloring. He loved it. He would color for an hour if you let him. We would choose a picture to color together. I would pick a handful of markers and allow him to choose which he wanted. We’d put the marker in his hand, and as I mentioned before, he would push the marker back and forth to color the area. He would color the ENTIRE section in, and if he missed a spot, he worked really hard to fill that little hole in. If he slid & went out of the lines, he would fuss, and if I couldn’t calm him down, he would stop, throw the marker down & turn his head away, clearly saying without words “This one is ruined. I need a new one!” My little perfectionist! His favorite thing to color was from his Elmo coloring book & he would always color things exactly the color they were in real life. Elmo is red, Big Bird is yellow. Pumpkins are orange. Apples are red. He was quite specific. Then one day, he colored a zebra blue and orange– a break through! He was finally getting a little creative! Yay!

C on vibrating seat

C watching TV on his vibrating chair pad. Like many deaf children, he loved vibrations of all kinds.

Cayden loved his movies! He watched a lot of movies with all of our driving around. How else was I to keep a hearing impaired child with very little arm mobility busy on 3+ hour drives? I’m not sure how much he understood, not being able to hear the movies, but many are pretty easy to understand even without sound. And he would often giggle at just the right places, so I think they made sense to him. First it was anything Elmo, all Elmo, all the time. Then Baby Einstein videos; we would do his listening therapy while he watched these videos with no sound. Very good for visual therapy! He loved Monsters Inc., Toy Story, and Cars, particularly Cars. Lightning McQueen was his favorite. He died before most of these movies had sequels, but I’m certain Planes would have been his recent favorite!

Cayden loved vibrations. Anything that vibrated was a hit with Cayden. From toys, to cushions, to chair pads, to extra loud speakers at church, he grinned when he could feel the floor or the earth move. Like many deaf children, this is a great way for them to interact with their world, and to get some sensation of hearing (without needing aids). We tried to use this to his advantage as much as we could, and I always looked for toys and things that would help him in this area. Baby toys are good for this, so are ‘old lady’ chair cushions & back  or foot massagers.

Monkey C

C swinging in his Halloween costume at a friend’s party.

Cayden loved to move. Especially to feel the wind in his hair (or on his bald head!). Anything we could do that would give him that sensation of wild movement, with strong vestibular input, he LOVED. He would giggle and ask for more. Swinging was fun. Twisting the swing up as far as it would go was better. Twisting the swing, then pushing it sideways, so it would go crazy while spinning was the BEST! I guess driving the power chair was about the best feeling he’d ever had. One day we were practicing, and I was trying to get him to drive up the street. Instead, he kept going into the neighbor’s yards. Bouncing over the bumpy yards was so much more fun (& more input) than driving on the smooth street. He knew he shouldn’t be driving in their yards, but he couldn’t help himself! Offroading in the power chair! I could see the mischief in his eyes as he giggled the whole way, driving so fast, I had to run to keep up. Wee HA!

C on Sammy

Working on arm, neck and torso strength while doing equine-assisted occupational therapy. It also was great for his hips and legs.

 

Cayden loved his horses. We started Cayden on hippotherapy (equine assisted therapy) which was for him considered his OT. He started this around 3 years old and rode until he passed away. He loved to ride, and weekly we would take the long drive to the barn.  The best part for me, was watching him get so excited the moment we turned onto the gravel road that led to the barn. He would arch and pull at his carseat, trying to jump out of the chair. He knew that he was going to get to ride, to pet and groom the horses, and maybe pet the bunny. Sometimes he got to bounce on the trampoline too! So much fun!.

When he began riding at Shining Hope Farms, he could not hold up his head. If I held him on my hip, he would flop backwards, unable to hold up his torso. After 9 months of weekly hippotherapy, he could. I could hold him on my hip without struggling. He could keep his head up to meet your eyes. He wasn’t always staring at his wheelchair tray. He progressed! Then we moved and quit riding for a while, until we found a new barn. At Wings of Eagles Ranch Cayden got to take therapeutic riding lessons with a class. He played fun horse games like leapfrog, and trotting around poles. Putting beanie babies in matching houses and other fun activities. He loved the interaction with the other kids and especially loved the games. It was as much work as at Shining Hope, but more fun!

 

newborn S

This has to be the sweetest picture of sibling love ever.

Cayden loved his sister. From the moment he saw her at the hospital, Cayden was smitten with his baby sister. He loved her and loved to watch her. As she got bigger, she would play with him, bring him toys, toddle around on his chairs or standers. She would push him in the wheelchair when she started walking. She adored him and I loved watching their relationship develop. Skylar went to all his therapy sessions and sat quietly and played. Sometimes she would blurt out the answers that Cayden had to work so hard to find the words for. The frustrated looks he would give her were priceless! But she would sit with him, ‘read’ to him, sign with him… it really was a sweet friendship.

S reading to C

Skylar ‘reading’ to Cayden. She had memorized the books and would tell him the stories. Such a sweet memory!

She was with me when we went to wake him up that fateful morning, and just didn’t understand why he wouldn’t wake up and giggle at her like he usually did. Skylar had preschool that morning, so we sent her to school, so we could handle the situation and the grief. We ended up making the hard decision to not have her see his body again, but when we went to get her from grandma’s after school, she immediately said “Where’s CC?” and the explanation had to begin. She didn’t understand life without him, and oh, how hard it was to explain death to a 2 1/2 year old.

I hated the fact that my child died so young, but we had been preparing for that day from before he was born. We had already grieved and cried and gone through so many of the ‘what if’s’ that when the dreadful day came, we weren’t completely unprepared. We never really thought we’d have as long as 4 1/2 years with him. We really thought we’d get only a few hours to know him. But Skylar didn’t know that. We hadn’t shared that possibility with her. But now we had to! It was hard! It is hard!

I hated that the death of my child, exposed so many of our friends’ children to their first experience with death. Our playgroup, our church friends, our other friends, so many had young children, and we had to explain it, or their parents had to explain why Cayden wasn’t here anymore.  I always explained that Cayden had gone to be in Heaven with Jesus, and could walk and talk and run now, that he was perfectly healed. Perhaps it’s good for children to hear the gospel at that young of an age, the truth of Heaven, but I hated that I was the bearer of that harsh reality because of my child’s death.

How do I know that he is with Jesus? you might ask.

The Bible tells us in 2 Corinthians 5:1, 6-8

For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Therefore, we are always confident and know that as long as we are at home in the body, we are away from the Lord. We live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord. 

We have a home in Heaven, an eternal house, built by Christ. We can be confident that to be away from the body (that is, dead), we are at home with the Lord.

In Revelation 21:3-5, it says it again:

“Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”

How can we be sad at Cayden’s death, when it means for him, to be at home eternally with the Lord? To be made brand new! With a new body not made by human hands. Knowing this, being confident in this, I cannot have a heavy heart. Cayden is made new. He is at his eternal home. Someday, I will join him and we will rejoice together, celebrating birthdays for eternity with Jesus.

Shira

More about Heaven tomorrow…

 

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“Ephphatha!”… 28 Days of Cayden, Day 16

Cayden used the SuperTalker for a while & had good success with that and the eye gaze system. However, I was frustrated with the time-consuming page-changing of that device, and so was Cayden. I finally persuaded the speech team to allow C to have an assessment for a computerized speech generating device (SGD). The speech team was quite sceptical that he really understood what it was for & could really use it, so it took me a while to get the appointment.

After a long wait, we finally were scheduled. Cayden was quite excited about it, but if I remember correctly, he was not feeling his best & was having a rough day. We went anyway, since we had waited so long to be seen. He started with the easy switches. They needed to see if he understood the cause & effect of the toys. He did, but, it was obvious that they didn’t believe me, his mom. Of course he thought the toys they had were babyish, so he wasn’t interested & didn’t really want to play with them. Combined with the fact that he was not feeling well, it was just not worth his effort to participate. The team took this disinterest as not understanding, but I persuaded them to try something else.

Springboard SGD

The Springboard Plus. Cayden’s first attempt at ‘talking’ was on this, but with larger icons, I think about 8 on the screen.

After several attempts, Cayden ‘passed’ this first switch test & after a few other things, they let him try a small Springboard Plus. This is a starter computerized SGD, about 6″x8″ screen. They had a few regular screens programmed in for him to use. The first thing he said after showing it to him, and Cayden looking at it for a little while & waiting for him to process & reach was “I want…a…cookie!” I told them they better give him a cookie, because he worked hard to make it say that. The next phrase he said was “I feel… Excited!”

I could tell that he really liked this device. I know he understood that it was something that would make his life easier & with it he would really be able to speak his mind. The evaluation team was not so sure. We tried several other devices and toys with him, none of which drew his attention as well as the Springboard.

After a long evaluation, it was concluded that Cayden probably could benefit from a SGD, now the question was… Which one? The variety was almost overwhelming. But we luckily had a good assistive technology lending library (link) so we were able to do demos on a variety of models.

In the end, we selected a large screen (because of his motor issues, we thought he needed a larger target), possibility of eye-gaze selection, switch selection options, and one with a built in computer (to grow with him & allow him to watch movies or access the internet). The ones we debated on were a large Dynavox & an Eco. I liked the programming & the tech support of the Eco brand better so we decided to move forward with that. After a long involved process (I think it was almost 10 months from the initial evaluation to the day of delivery) challenges with insurance and assistive tech funding we finally got it in October 2007.

Eco-13

Cayden’s screen was not full. We had a 15 icon screen, but several of the spots were empty to allow a bit of flex space in C’s reaching. The icons were about 2″x2″ which we had already determined was about as small as he could go visually & physically.

This was an amazing device! It was so versatile & really was as programmable and as personal as we wanted it to be. I spent many long evenings putting in books, icon pages & school related pages. We had pages for food, for clothes, for people. Conversation pages. Pages for playing with his cars, his trains, his kitchen. Pages to have up while watching NASCAR or basketball with Dad. Pages of body parts & ailments. So many pages. But there were so many things to say!

We could take a picture of anyone & make an icon for them so Cayden could say “Hello Sue! Hello Amy!” He would go from page to page selecting and making sentences. Yes, he babbled, he made nonsense sentences but he also made a lot of sense with it. (The babbling was actually encouraged, as it was his means of doing ‘baby talk’ from an auditory language perspective. He needed to play with words to start to build sentences & hear it coming from his own head, before he could do it correctly. He did this sometimes, but most times, he made quite a bit of sense.)

At first, the assistive tech teachers (who I loved) wanted him to really understand their list of 8 main ‘power words’ & wanted him locked on that screen. Stop. Go. Yes. No. Mom. Me. Out. Eat. That was it. They didn’t want him to do anything else until they felt he had mastered it.

C with arm supports

Front view using the arm supports. These were a crazy attempt to help him move his arms. I think you can see what he thought about them from the look on his face. They helped somewhat, but then he was bonking them on the device & causing mis-hits that way. They were hard to get him into and out of, & I hated having him so strapped into his chair, in case he started gagging, coughing or needed help. These were a good attempt but didn’t last very long.

But as I’m sure you know by now, this was not enough for Cayden. He wanted to talk! He figured out how to go to the other screens on his own & he would just play. He would make nonsense sentences. He would make real sentences. He could sing songs (with pre-programmed buttons that took him to his music). He had been waiting for this device for over 6 months & I was not going to tell him to go back to baby talk. Me go. No mom. He wanted the freedom to chat & I gave him that. (The teachers were not very happy with me on this, but once they saw that he was doing well with it, they lightened up on me!)

He would see new people at a doctors office & say “Hi. My name is Cayden. What’s yours?!” I wanted him to be able to check himself in at the doctor so I gave him and icon with our phone number. Trouble is, he saw a cute girl in the waiting room & said “Hi. My name is Cayden. What’s yours?! I live in North Carolina. My phone number is ……. ” He gave her our phone number! Seriously. The flirt! So I had to disable that screen!

lightning mcqueen

Beep, Beep, Get out of my way!

Not long at all after we got the device, it was Halloween. He was so excited! He decided to be Lightning McQueen so I painted up a car for his chair. I programmed his Eco13 to have the standard Halloween phrases & a few Lightning McQueen ones. This year we not only got to hear “Trick-or-Treat!” & “Thank you!” at every house, but if we caught up to other kids on the sidewalk he’d say “Beep! Beep! Get out of my way!”  Then he’d add “I’m Lightning McQueen & I’m faster than fast. Vroom vroom!” He loved the Lightning McQueen phrases, but Beep! Beep! was definitely his favorite.

By January, Cayden was really starting to become proficient with his device. He would tell us what he wanted to eat. He would tell us what he wanted to play with. He would tell us when he needed to go to the bathroom to be changed. (we were working on the potty changing, but it was slow going. I had high hopes that with the proper communication, he would be able to work it out much quicker.)

C talking with Todd

Talking to Uncle Todd.

The funny thing to me is that the device was so enticing to him (just like the iPad is to most kids) that he quickly overcame his arm movement challenges to make this work for him. His fine motor skills just bloomed with this device. All our prior attempts to assist him with step switching so he didn’t have to move his arms so much, and multiple switches everywhere to make selections went away. He just reached out and touched it. That was how strong the desire to speak was for him.

A desire to be heard is typical. We all have needs & wants and thoughts that we want to share with others. Biblically, we often see people who wanted something, take their requests to Jesus, many of whom wanted to have their family and friends healed.

Mark 7:32-37 (NIV) shares a one such story. There some people brought to him a man who was deaf and could hardly talk, and they begged Jesus to place his hand on him.

After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue. He looked up to heaven and with a deep sigh said to him,“Ephphatha!” (which means “Be opened!”). At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly.

Jesus commanded them not to tell anyone. But the more he did so, the more they kept talking about it. People were overwhelmed with amazement. “He has done everything well,” they said. “He even makes the deaf hear and the mute speak.”

Cayden didn’t really begin to speak. But with this new technology, his voice was beginning to be heard much more plainly. This very expensive, very high tech device was such a blessing to our family. Between the ECO-13 and the Cochlear Implant, Cayden’s true personality and potential began to shine through. Two of our family’s miracles came with modern technology, persistence and hard work, but I have to believe that He made the doors open to allow it to happen. We will continue to keep talking about it & maybe someone else will be ‘overwhelmed with amazement.’ Our deaf child heard. Our mute child spoke. “He has done everything well.”

Shira

 

My biggest complaint about Cayden’s ECO-13 was that this new, top of the line model SGD did not have a child’s voice on it. All we had to choose from was a variety of men’s or women’s voices. There were no kid voice options.  We could have had another child record all of Cayden’s speech & program that in if we had wanted, but that seemed like SO much work to me it was not feasible. So he would talk with a realistic sounding man’s voice, which was a little funny, coming from a 4 year old. But it was better than nothing & I do believe that now children’s voices are available on similar devices.

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

 

 

 

Cause & effect… 28 Days of Cayden, Day 14

So… were YOU able to care for Cayden? I hope so!

Today I will tell you more about his early communication methods besides the obvious vocalizations and whining, so maybe you will feel more prepared to watch him for us!

We went through a series of more and more complex switches with Cayden, trying to see if he would be able to learn cause & effect. The first ones were basic baby toys that play music or light up when a button is pushed. This is a very simple learning step for most children, but for kids with processing and motor challenges this step can take quite some time to learn. Simple switch toys are all over the baby department, we particularly liked the v-tech ones (they had the best lights & sound combos).

C & big bird

Cayden loving his vibrating Big Bird & large panel switch.

Once he realized that his actions could affect his world in a pleasurable way, we were starting to communicate! His first real assistive tech ‘switch’ was a vibrating Big Bird. He learned to push a button & the toy would vibrate. This of course led to the Tickle Me Elmo which was a favorite of Cayden’s for years.

We also found that he worked really well with a switch called a toggle or swipe switch. It was more of a joystick style switch that he just had to push in any direction to make the object respond. As long as the switch was not at center, the toy would work. If he stopped pushing, the toy would stop. This was great for trains & other fun toys.

Police car switch toy

The toggle switch activated police car, it drove front & back & had a great loud siren (that he couldn’t hear!)

Next he progressed to a switch talker. This one was a very basic communication device that had the ability to have switched out sheets with pictures on them, from 1-8 pictures per page (sizes went down as numbers went up). Each size could have several pre-programmed pages so we could talk about a variety of things, just by turing a switch on the side. This one was a good starter communicator, but it required a lot of adult participation, changing the sheets frequently (which took a lot of time to create). We ended up using it for a while as a talker with connected switches on each arm of his wheelchair, and the talker in the backpack. One hand would say yes, the other no. OR one would say please, the other thank you.

 

Trick or Treat!

His Halloween get up. The toggle switch said “Thank you!” the little red switch (behind the horse’s ear) said “Trick or Treat!” Both were connected to the speech generating device in the backpack of his chair.

MY favorite use of this setup was for Halloween. We used one to say “Trick or Treat!” the other to say “Thank you!” Cayden really got into this! The whole time we were going from house to house he would be pushing the “Trick or treat! Trick or treat! Trick or treat!” & we still had to remind him to say “Thank you!” every time. Just like a 3 year old!

We were very blessed early on, to have the Sunday School class from our church donate some money towards Cayden’s fund. That helped us be able to purchase and try a variety of switches to see which might work the best for him long term. We found he could use anything down to a small quarter sized switch, and actually the smaller switches worked better for him, because they required less effort. Placing them on the arms of his wheelchairs really worked extremely well for him, and reused that setup for qute some time. We tried head tilt switches, (he was not a fan), squeeze switches (again, not great as he did not have good hand grasp), large panel switches, ok, but required a great deal of concentration to reach & raise his arm to press the switch. His favorites were the toggle and the micros.

We were also able to borrow a lot of switches through our local assistive technology warehouse and lending library, which helped determine which toys might be worth the money. Switch toys are crazy expensive, and like any toys, kids get bored with them. Some of his longest lasting toys were a light up airplane with spinning fan propeller we got at CVS & used a switch adaptor with; an adapted Chicken Dance Elmo & a vibrating Big Bird. Other were not so popular, like the jumping frog or walking pig. He did eventually learn to use a 2 switch remote controlled car, (using his talker) which really was his favorite.

Roller switch talker

The roller switch talker. This one played a section of a recorded song or book each time he rolled the switch. So to hear the whole recording he had to keep rolling the switch.

Simple switches are everywhere you look too, once you know what to look for. You don’t have to pay the big bucks to get your kids to learn this concept.  Have your child see that pushing the elevator button makes the door open & bing. Pushing the accessible door buttons makes the doors swing wide. Pushing the garage door opener or the doorbell, the tv remote, the light switch. The blender buttons, the ice maker, the fan switch all are good ways to learn cause & effect. Yes, we had special (expensive) switches to access many of these things, but really it wasn’t necessary.

Why spend the money and take the time to train your non-verbal child to use switches? Well these simple steps were the first steps towards independence for Cayden. They helped him learn how to ask for things, and how to respond simply. They taught him cause and effect which… fast forward to the future, helped him learn to drive a power wheelchair, and use a more complex assistive technology device. I will share more about that tomorrow, but know, the effort is worth it in the end. Watching Cayden do something as simple as Trick-or-Treating on his own, and seeing the smile it brought to his face, made the work worthwhile.

Learning cause and effect also allows your child to start learning other things, like the consequences to actions, which in turn begins to allow discipline and training as taught in the Bible. Proverbs 29:17 tells us to “Discipline your children, and they will give you peace; they will bring you the delights you desire.” It is impossible to discipline a child or train a child in proper behavior if they do not understand the simple process whereby this action causes this result. The discipline needed to train a child into a mature adult needs to begin early, and the fact that a child is disabled doesn’t mean that they don’t need discipline sometimes.

Cayden needed to learn that he didn’t always get his way, that being naughty was not acceptable, and that his parents were in charge, just like all kids. Once we learned that Cayden could think just like any other child, he was not cut slack in our house on behavior. Whining was not encouraged (unless it was a communication tool), and tantrums were unacceptable. without the basic understanding of cause and effect, this training could not work, but for us it did. I encourage you to try it with your kids too!

Shira 

Could YOU be Cayden’s caregiver?… 28 Days of Cayden, Day 13

Bethany & C

Bethany, our first CNA, spoiled Cayden, Skylar & me. She was an immense blessing to our family for a year and a half.

Wow. I am getting a bit weary of this daily posting, I have to admit. But I must persevere & keep you informed & entertained. ; )

As I have said, Cayden was blind, deaf, mute and had a variety of other physical issues and motor challenges. It was fine for me to deal with, I was used to his needs & could read him easily. However, when he was not with me I wanted to be sure that his aides understood him as well. Some of our nurses were excellent (Bethany, Kelly, Berkeley, Shanna) some mediocre (no names come to mind, because they were not noteworthy), and some were flat out AWFUL (crazy Donna for one, girl freakishly scared of dogs another). But I needed a break & they were paid to care for him, so I wanted to allow that to happen.

Kelly

Usually if you came to watch Cayden, you got Skylar too. They were a package deal! Skylar just didn’t understand that the caregivers were not there to play with her too! This is Kelly Kelly Kelly Kelly.

Cayden also attended Sunday School and church nursery, and nursery at my MRO Bible Studies (thanks Patti, Melanie, Ann, Josette & Kim). We sometimes had babysitters, and at 3 he started attending preschool. In a few minutes during drop-off, I could go over some of his issues with his aide, but not a whole lot. Luckily, the ladies at the church nursery were excellent with him & had cared for him since he was a baby, so he was pretty well spoiled there.

 

Mindi, Chelsie & Cayden

Our friend Mindi & her daughter Chelsie helped us a lot. Cayden loved Chelsie paying attention to him!

Babysitters were few and far between & usually a friend of ours who could handle the frequent vomit & other Cayden issues (love you bunches–Dana, Stacy, Mindi & Eddie, Amy, Bonnie & John, Coleen & Jimmy… thanks for helping us out). My parents lived across the country, but came frequently to help, especially during surgeries & other busy times. Thanks Mom & Dad! And Joey’s parents came to help a few times too, thanks Jack & Pris. If I have forgotten anyone, I apologize, we do appreciate all the helpers we had at home & out in the community. It took a small village to raise this little man!

C & g & g

Cayden being loved on by not one, but two grandmas at once!

 

I needed a break now and then from the constant caregiving. I needed to feed and play with my other child. I needed to rest. I needed time in Bible Study. I needed time to re-fuel & I needed to trust others to care for my son. It was hard, but it was necessary.

Luke says in Acts 20:35: In everything I’ve done, I have demonstrated to you how necessary it is to work on behalf of the weak and not exploit them. You’ll not likely go wrong here if you keep remembering that our Master said, ‘You’re far happier giving than getting.'”

For those times when we needed to share caregiving duties, I came up with this little book for Cayden that I printed out, laminated & put on a ring. It hung on his wheelchair near the handles. I encouraged people who were caring for Cayden to read it and become familiar with it, so they could learn more about his little idiosyncrasies.

So for the rest of today’s post, I am going to let Cayden do the talking, as he would have if you were his temporary caregiver. I think you will learn a lot about him and perhaps you can begin to imagine how hard it was for us to leave him with others.

As I leave him with you, I tell you this… Remember, he can hear, & he can see you. Don’t talk about him, or over him, talk to him. He might need to be changed, but he should wiggle & let you know it he does. Please don’t let him sit in his chair all morning. He loves to sit in your lap & be cuddled, especially while eating or reading a book. Don’t yell in his ear, but don’t talk too softly either, both are frustrating for him. Sign if you can, but if not, use his symbol pages to see if you can figure out what he needs. Those are in the backpack on his chair. Thanks & have fun! I’ll be back tomorrow!

Shira

(If you click on the picture, it will enlarge the cards for you!)

intro cards 1 intro cards back

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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.