Thursday, June 27, 2013

summer break begins

So sink me...  Summer is here.  Arrr!   

So says this pirate Rachel.  This is a snapshot from today, her last day of school until September.

The end of school is not a favourite for many families with special needs.  Kids who crave routine and have difficulty with transitions can't just sail from school routine to summer flexibility.  I am conscious of that with regards to parents of children who live with ASD and related hurdles - and wish for our friends a summer of grace, patience and good experiences.  Rachel seems to be okay with the change in day-to-day, but it is a challenge for us as parents to fill her day with meaningful activity.  

Rachel has had another wonderful year with the staff and students at the Niagara Children's Centre School.  We are thankful for the love, care, advocacy and determination of all those who work with Rachel at her school.  Our thoughts from last year are echoed in this post: We are encouraged and motivated by teams of people like the Niagara Children's Centre School who believe firmly that:

Rachel's team of support included Mrs. Stewart (seen in these photos).  She challenged Rachel to use her "talker" and other ways to interact in the classroom.  I had to laugh when I reviewed the photos and video from Rachel's art show.  Rachel does not enjoy being in front of a crowd of people, and her frowns in the two following photos support this statement.  Rachel is seen looking away from her teacher and choosing not to use her talker to explain her art.  How typical of a stubborn 7 year old! 

With just a small group of students, the Niagara Children's Centre School works hard to set and meet individual goals that may be difficult to achieve in a typical classroom setting.  Even though the school day may appear a-typical, there are many experiences similar to other schools.  Rachel was in several class plays, and she recently starred as the singing bridge for a pirate play.   Once again, we were gently challenged by the staff to see what Rachel is capable of doing - and to expect the unexpected.

This past school year also included tremendous support from Marlene Teeuwsen.  She came into our home on school days at 7 A.M. to help get the girls ready for their day.  Marlene quickly learned the tube feedings and morning care routine, adding her own loving touch for the girls. Rachel and Janneke often greeted her with smiles or sounds.  (Mind you, both Rachel and Janneke also mastered the art of sleeping through their morning wash and care.)  

With the start of summer comes the annual Easter Seals Regatta in Port Dalhousie.  John and Margaret Krall were our hosts again this past Sunday, and we loved the ride on Lake Ontario.  Always a treat for the family, and the Kralls are wonderful company.

Katelyn (niece and respite worker) came along this year, and we were thankful for the extra help, allowing us to relax and enjoy the ride.

Even though Janneke was still not feeling well, she mustered enough energy to make the most of the ride.  She was able to put weight on her feet for the view - and we wondered if she was considering a quick dip in the water.

Lest we forget, our American friends are often finished with school three weeks before we are - and we were happy to host them as part of their already-into-summer plans.  The Eenigenburg family stayed for a night as a pitstop - er, Potstop - en route to Washington D.C.  Our kids instantly connected again, and we loved the sweet but short time together.

We continue to take life one day at a time.  This weekend, we hope to install a second deck lift that will give Rachel and Janneke a second exit/entrance to our home.  A family in our neighbourhood is giving us their lift, as they no longer need it.  They have their own story, and we grieved with them and for them, as they shared small glimpses of their daughter's life and death.  We hope to honour their daughter and family by planting a bush or flower that will bloom each year in her memory - and out of our thanksgiving for the lift.

Peace to your homes tonight.

Wait - and a special thanks to our transport staff, Pina and John, who safely carried Rachel to school every day.  

Wednesday, June 19, 2013

Janneke's update

Yep.  We've been busy.

Janneke here.  I am dictating from my bed tonight.  I've got Mom worried (again) because I am feeling lousy.  I can't seem to get through to her what is the problem.  In the meantime, here's an update:

My cousin Mariah finished painting the trees in our bedroom, and Mom hung up Rachel's crafts.  I'm a little miffed that all the pieces are Rachel's, but when I start the JK program at the centre this fall, Mom will be seeing so many crafts from the two of us, she'll be asking Mariah for more trees. (By the way, I think you should get Mariah to paint trees at your house.  Email my mom for more info.)


Dad got a lawn for Father's Day.  Uncle Tim gave all the orders, and Uncle Jim, Aunt Grace, Uncle Johan, Dad, and my big sisters worked hard to make this place a bit greener.  Mr. Kok came by to help for a bit too.  I thought about helping, but I was pretty comfy in my swing, watching all the action.  I was tempted to yell, "Green side up!"  

Now Dad is like a farmer, closely inspecting his crop. He is watering and watching to see if the grass will actually grow.  I sure hope so.  I miss laying on the grass in the summertime, watching the clouds go by.  Emily and Sophia keep asking when Dad will put the trampoline back up.

On Father's Day, we went to see my Opa - all of us fit inside his cosy room at Shalom.  I love my Opa. He likes to hug me and make me smile.  We share secret jokes without saying anything.

Oma is pretty special too.  She spent time talking to Rachel - and staying out of my way.  I tend to run over toes in my walker, even my Oma's toes.

Biggest news?  I graduated from my preschool program today.  Mom says the IPRP team at the Niagara Children's Centre is pretty special.  I think so too.  They have helped me make friends, and they let me paint, play with applesauce (with no spoon!), and practice standing.  Mom says she will miss them.  They worked with Rachel too, so they have been a part of our family for two years. 

Mom says today was a bit sad because we said good-bye to the team of helpers that have worked with our family since the fall of 2006.  (Way before the coolest kid in this family was born.)  Starting this fall, we will have a new team of helpers because I will be going to the Niagara Children's Centre School.  This new team includes people who have been smiling at me in the hallways at the centre; they know me a bit because they work with Rachel right now.

Speaking of Rachel, here's a token shot of her.  I prefer all the attention, but I will share a bit with her too.  She went to the zoo today with her class (jealous sister here), and she's been hogging the hammock.  

Alright, I'm signing off for now.  Mom will take over again.  I hope to tell her soon what's making me sick, and then we will both sleep better.  

Peace to your homes,

Sunday, June 2, 2013

Sunday afternoon

Can you guess where Janneke is?

The other day, my sister Jess called and said, "You need to camp this summer.  How do we make this work?"

We are nervous but ready for the challenge again.  Em and Soph are thrilled that we are considering a holiday with all 7 of us (including a respite worker), and we are thankful for the additional company of family who are excited to lend a hand.  We have now planned three separate times between July and August when we will be camping with family - on an electrical site or in my brother's backyard.

Holiday plans for families with children in wheelchairs are a challenge.  Not only do we need willing hands to help, we also need specific accessible spaces. Cottages and similar places advertise as accessible, but the clincher for us is beds.  We need beds that are raised high to our waist, for safe transfers from wheelchair to bed.  We also need wide doorways and no stairs.  Believe me, we've checked out many options via the Intergoogle.  

Practically speaking, a campsite has no stairs.  And now that we cut open the side of our pop-up camper, we have waist-high beds for safe transfers.  Here's hoping the mosquitos stay away.

So... the photo of Janneke?  She's trying out our hammocks.  Two beautiful gifts from Jason and Faye, part of Vivere.  These hammocks will be another space for our girls to lay when sitting is too painful, or they need a change of scenery.  

And big sisters can enjoy the comfy space too.

Speaking of the pain of sitting, Rachel has needed a break these last few days from her wheelchair.  She came home early from school on Friday in pain and has been recuperating this weekend.

This aft, she took time out to hang on the back porch while Emily blew bubbles for her.  Can you see the large bubble on her face and fingers?

Janneke has more ease with being upright and sitting, but she wasn't so crazy about the bubbles.

Soon, I hope to share with you our addition to the girls' room - our new zip-line (the ceiling tracking) and our indoor trees.  Ralph's niece Mariah is a talented young artist, and we hope to showcase her work.  If you are looking for someone to paint beauty in the home, email me - see address in top corner of the blog.

Peace to your homes tonight.