Monday, February 28, 2011

music to our ears

All good things must come to end. Sorry, Karen, the fort is down.

So, I promised in the last post that I would write a bit about a musical visit we had with our friend Mendelt, a good friend who also happens to be a music therapist. He came to play piano for and with Rachel one afternoon.

Let me preface this time by explaining that in Rachel's first two years of life, she was more or less nonverbal. We hardly heard any sounds from her, with the exception of crying when she had bowel troubles and random "coos."

The day after Janneke was born - even though Janneke was in the hospital and Rachel had not met her, Rachel started making more sounds. She became even more vocal when Janneke arrived home. That was amazing to us!

Fast forward to June 2010 when Rachel was admitted into PCCU at Mac for intubation issues, serious trouble that arose from an otherwise normal MRI procedure -eight days of an incredible roller coaster of emotions.

When we took her home, she did not make a sound for a long time. It made us very sad to think that our little girl was so profoundly affected. Would we hear her voice again?

When her preschool therapy started in the fall, we started to see more smiles, and we heard a few sounds. This was very encouraging.

This past week, Mendelt came to play piano. He used a technique that we also use with toys or concepts. He repeated the same song over and over, and then he began to stop just before the end of the song. Rachel caught on to the game right away. You Are My Sunshine is the song we have sung to Rachel since birth. Mendelt played and sang this song to Rachel - and then he stopped at the last word. He waited.

The first time, Rachel started flexing her jaw, as if to attempt to say something. He sang the song again, and stopped at the last word again. "Please don't take my sunshine....."

Suddenly, Rachel started making a series of sounds as if to say, "I know the word, I know what to say!"

Her smiles were priceless, her sounds were beautiful.

And the crazy part? She didn't stop making sounds for the next 24 hours, save 6 hours for sleeping.

Here's a couple of photos from the video:

She leaned her head on his arm while he was playing.

What was Janneke's reaction to all of this?

Well, we did put her next to Mendelt at the piano, but she kept her solemn (I call her Opa) face on - no emotional reaction. She watched his hands move on the keys, and then she concentrated on her own hands touching the keys. When I had Janneke in the walker while Rachel was next to Mendelt, she kept banging into the piano stool.

Maybe she was irritated that she couldn't have the piano to herself? : )

So, yesterday, I thought I would borrow Mendelt's idea and take it one step further. I plunked out the melody to the same Sunshine song. I am nowhere near the artist he is, but I think Rachel still knew the song. I played the melody several times, and then I stopped at the last note.

I waited.

And here's the great part: Rachel reached her arm out, placed it on my arm, and pushed on my hand to play. She kept her hand there as I played the melody over and over (hence, the photo). I stopped before the last note, and each time, she would apply pressure for me to play.

This experience reminded me of the Friendship services my dad (a pastor) would lead with another ministry leader back in the late 80s. These special church services were designed to include all abilities, particularly youth and adults who were developmentally challenged. The singing was the best part. As teenagers, my friends and I thought this kind of church was cool! You couldn't help but smile at and be envious of the pure joy and freedom expressed in song.

I remember my dad telling me about a father of one of the disabled adults who spoke with him after one of the first services. This father said to my dad, "For the first time in my son's life, I am proud of my son." The music ministry opened this father's eyes to a love and pride for his child he had not yet experienced. I never forgot that.

There are some amazing stories of how music can heal, can penetrate a secret place of being within what appears closed. The power of music reminds us there is still so much we cannot see that is greater than us or our understanding.

For Rachel, music enables her to reach out and interact. It enables her to touch her mom's hand, to make others smile, and it gives her permission to make whatever sounds she can.

Music to our ears.


P.S. Thanks, Mendelt. Sorry the piano isn't tuned.

Saturday, February 26, 2011

photo highlights

Um, I wonder who's hiding in this fort?

Hi, Mom. You found us!

Em and Soph spent the later part of Saturday afternoon, building a fort - complete with campfire.

My favourite moment? When they assumed I would have no problem carrying Rachel and Janneke into the fort, including their feed pumps. But, why not, Mom?

Rachel and I had a chance to visit with my parents on Thursday night. Rachel was thrilled to be with them, and I laughed as we pulled into their driveway. She started making a hard "g" sound, making me wonder if she actually knew exactly what I was up to. It was great to visit with them and see Dad doing so well after his hip surgery.

I've decided one of the best jobs is being an occupational therapist or a speech language pathologist. You get to paid to play. I realize that it isn't always easy, but Janneke sure enjoys all the fun. This week, we were experimenting with coloured water and things that float.

She was learning to anticipate when the water was being poured. That's one big glass of Kool-Aid, kiddo!

And we visited JK again on Friday, this time with the stander. The kids loved seeing Rachel - "She's as tall as me now!" and "Look, she's standing, she's standing!"

Truthfully, the real highlight of the week was when our friend Mendelt came to play piano with Rachel. I want to save that reflection for the next post because I hope to share some video or photos with you. It was a 40 minute session that gave Rachel the ability to almost sing. She began talking and didn't stop for the next 24 hours, save 6 hours for sleeping. It gave us so much joy.

But more on that later.

Now it's time to make formula, tell Janneke not to wake up until the next feed, and then go to bed.



Monday, February 21, 2011

give 'er time

Because it's Family Day (another holiday!) here in Ontario, I thought to post a recent photo of Rachel with her Uncle Jim. At first, Rachel wasn't so sure of the hat, but it didn't take too long for her to adjust to the style.

And that's what is so important about interacting with her: time. When you chat with her, you have to give her a lot of time to process your face, your words, and, well, your fedora, should you be wearing one.


Monday, February 14, 2011

power of the powerless

So, after sharing the uncertainty many parents feel when considering school for their special needs child on the blog earlier today, I am greeted with these grins after their naps:

Such power in a simple smile

How can I be worried when their smiles remind me: Do not be anxious about anything, Mom! (Philippians 4)

And at the end of school day today, Rachel received a bag of valentines from the JK class. Rachel loved looking at all the little notes. The teacher, Mrs. Thiessen was thoughtful to also send a special mobile. Rachel has not stopped staring at since I hung it from the IV pole. Ruth J. was volunteering here at the time and reminded me it wasn't that long ago we were trying to get Rachel to focus and follow things in the room!

Two posts in one day. I must be procrastinating. Oh yes, supper...


checking out schools

Janneke, it's a bit early for you to go to school!

This morning, while Rachel was in program, I had Janneke wheeling around NPCC. She was determined to join the NPCC school Valentine's Day assembly, as well as tour as much of the halls of the centre as possible. Finally, a place to scoot where she doesn't have to ram into doors, walls, and furniture!

It's that time of year again when we need to figure out Rachel's school plans for September. The school/day care therapy she is in currently is a one year program, so plans must be made for the new school year. This is an intimidating process. Ask most parents of a child with special needs, and they will share with you their concerns for adequate support staff, equipment, physical layout (stairs!) and applicable program - regardless of school district or school board.

Whether it is physical delay, developmental delay, medical issues or behaviour management, the extra stress placed on the classroom teacher and school also causes anxiety for the parent who must advocate for the best scenario. There is no perfect system for these children, and there exist both encouraging and discouraging stories of children who transition from the children's centre therapy teams to the mainstream schools.

Within the building of the NPCC but separate of the centre, there is a small school (through Ministry of Education) that works with a selected and limited group of children. The intention of the NPCC School is to help children with that transition - to eventually attend a mainstream school program. One of the objectives is to help with communication, something that obviously helps in any typical school day.

We are so thankful for the program Rachel is currently in. I can only hope that we will be as thrilled with the next step for her in September, whatever that might be. We will not learn what that will be until May or June. We do hope that she will receive tools/strategies that will help her communicate and be part of a community of friends. Where this will happen remains to be seen.


Praying for peace,

Tuesday, February 8, 2011

living together

Had a chance to attend a church with the whole family -plus Ashley- this past Sunday. The visiting pastor, Mark Stephenson, is the director of Disability Concerns for our church denomination. He addressed the congregation on the importance of including everyone, using the text from I Corinthians 12.

The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body.... If the ear should say, "Because I am not an eye, I do not belong to the body," it would not for that reason cease to be part of the body. If the whole body were an eye, where would the sense of hearing be?

All parts belong. All parts are important. All people are important. All of us belong.

Until we learn to walk alongside each other, learning from each others' visible and invisible disabilities, we will not understand what it means to truly live in communion with others.

As believers in Christ, living in community means living as the Body, the Body of Christ - the communal sense of bearing His image. (Not my words - check the link for more.)

Because caring for or carrying visible and invisible disabilities can be lonely, there is a deep appreciation for those who take the time to learn about your life -your child's disability or your own.

And this is different from choosing to have some alone time. I am referring to a loneliness that comes to anyone who feels left alone, feels as if no one believes or recognizes their daily struggles.

Sharing this journey comes in the form of two companions: Those who can sympathize and want to help, and those who can empathize and wish to also be supported.

:: photo break ::

When Rachel is at school therapy, Janneke takes over her bed.

I hung a small disco ball to catch the light. Janneke isn't quite sure of it yet.

Thanks for reading the blog and walking with us.

Recently, I posted a question through our church denomination, asking about other families with children like ours - who don't fit any specific syndrome or category. If you're curious, click this link. (It's timed, so the link may change after one day.) I have no idea what type of responses my question will generate. Time will tell.



Tuesday, February 1, 2011

one foot in front of the other

Today, Janneke had a chance to work out on the treadmill. The exercise was for her mental and physical benefit - to feel the motion of walking forwards. We are not anticipating that she will freely walk, but this is another step towards bearing weight on the legs and strengthening the bones. It's a neat setup: There is a harness that hangs over the treadmill, supporting Janneke while the physio therapist moves Janneke's legs with the forward motion. The picture doesn't show the harness, but it is suspended like the old style Jolly Jumpers. The straps are hidden under her "Hup Holland" bib.

No, I won't wax eloquent here and suggest that I feel suspended over the treadmill of Life. Because I don't.

The last few days have been good. Both girls continue to soak themselves with their secretions (saliva) in the night, so there are frequent costume and bib changes between 10 P.M and 6 A.M. But - great news - a dear friend gave us a TV and DVD player to set up in their room. This means when they are wide awake at 3 A.M. and need something to distract them from their discomforts, they can watch lights and puppets - while I sleep!

If you would have told me a few years ago that we would have a TV in a child's bedroom, I would have instantly denied the very thought. I am not a huge TV fan - never really was. I think it was because my imagination was overactive; I could not separate myself from the story. Don't even get me started with Winnie the Pooh and the Blustery Day.

But, this is a new dimension of parenting, and we are so thankful for the lights, music, and puppets that are able to dance at night, when we no longer can.

This past weekend, we slipped out for an hour to look at the light displays at Niagara Falls. As soon as the feed finished at 6:30, we bundled everyone in the van and drove the 15 minutes to see all the displays. All four girls loved the colours and lights, and it was a real treat to do something with just our family. We peaked over the ice at the Falls and marvelled at the "icebergs" formed by the cold weather and falling water. Amazing. We zipped home in time to start the next feed at 8:30 and still feel like we got away. Hurray!

Tiny steps on a treadmill, the power of the Falls, beautiful creations of ice and snow, an impending snowstorm.. all point to an even more amazing Father who holds this Earth in His hands.