World Down Syndrome Day

Today is World Down Syndrome Day.  I attended a session at a cafe tonight about "The Future of Down Syndrome Research".  It was sponsored by Novel Tech Ethics, a research team affiliated with Dalhousie University.  There was a panel of three speakers, each of whom made a few prepared remarks and then and open discussion.

It was interesting to hear the views of so many different people connected to the Ds community.  Several parents spoke about the need to include individuals with Ds in framing and carrying out the actual research.  The analogy was that no one would think it acceptable if research relating to women's role in society was conducted solely by men and that similarly, people with intellectual disabilities should be involved in research.  I thought it was a good point and probably not one that most people think about.  I think the research community has to challenge itself to do a better job of being inclusive.  The point was made that it would have been relatively easy to include a speaker with Down syndrome on the panel tonight.

Aside from that, there were lots of topics covered.  Most areas where people wanted more research were really applied.  Questions like How can I prevent my son from developing Alzheimer's?  What can be done to improve things like memory and speech in people with Ds? There were some bigger picture questions like Is it acceptable that CIHR spends more than twice as much funding research into detecting (and implicitly, preventing) Ds versus how to improve the health of people living with Ds?

It was an interesting event and a good opportunity to meet some parents that I hadn't met before.  I encourage all of my readers to take the opportunity to think about or look up some information on a topic related to Ds that interests you.  Also, take a moment to check out this photo montage "See the Ability" put together by the Canadian Down Syndrome Society in celebration of this day - included is a young man from Tillsonburg!

Happy World Down Syndrome Day (officially declared by the UN in 2012).

Mary Ellen

Vacation Time!

 

Last week we went to Florida!  It was the first time I had ever done a warm vacation in winter and it was great.  We stayed at a nice resort with seven pools, mini golf and other activities but most days we were out and about doing other things...

Jan was already in Florida for work so he picked us up at Tampa airport and drove us to a nearby hotel where we stayed that night (our flight got in at 8pm).  The next day was quite cool (jackets and sweaters in the morning).  We went to a manatee conservation area, walked along a beach and then headed to Orlando to the science centre.  There was a special Star Wars exhibit that Donovan greatly enjoyed and lot of activities for Malcolm.  Then it was time to go grocery shopping and check in to the aforementioned resort.  The next day...

Above, the boys are pictured at Animal Kingdom.  We all had a great time there.  We saw lots of animals and we obtained a disability pass for Malcolm.  The best part about the pass was that they attached a bright red tag to his stroller which meant it had the same status as wheelchair.  This was crucial because at all the rides, attractions, etc then there is a designated stroller parking area and then kids must walk through to get on the ride, often waiting in line for upwards of an hour.  With the pass and the red stroller tag, we could access the wheelchair entrance which meant we got to wheel Malcolm right up to the ride etc and then take him out.  Often there was a much reduced lineup or no lineup at all!  

We all enjoyed a train ride to an area with a petting zoo and bug-related activities.  We enjoyed our picnic lunch at a table in the sun since it wasn't a super warm day.  Then we had gotten a "fast pass" for a safari ride through the African area and saw tons of animals!  It was really busy but the fast pass and stroller tag worked really well, though it is possible we didn't need the fast pass since we had the disability pass (we weren't sure so decided to get the fast pass just in case). 

In the afternoon, we wandered around and saw lots more wildlife, got some ice cream (expensive) and Jan and Donovan went twice on a water ride that did not have a very long line, possibly because it was not a super hot day and some people got pretty wet on the ride (including Jan!).

Below was the highlight of the day for me - the photos is a bit blurry but gives the general idea.  We went to see the Lion King show at 5pm.  It is a 30 minute show that is basically a mini Cirque, complete with acrobats, flame throwers and amazing entertainers.  Malcolm got to stay in his stroller - a godsend since otherwise he may have tried to star in several numbers, but was content to sit strapped in.  However, he did get to star in the grande finale number - an entertainer chose five kids to bring onstage and rattle some shakers as part of the number.  She purposely chose Malcolm and obviously had experience with kids with special needs because she was great with him - kept a close eye while she was showing them all what to do and then when it was their turn to to shine she kept a tight grip on Malcom's hand and he got to lead the way!  Jan and I were so proud and Malcolm really liked it, though was also a bit overwhelmed! 

 The next day we had a quite morning at the resort, lounging in our suite and swimming in one of the "lazy river" current pools.  After an early lunch we caught a shuttle to Magic Kingdom.  Our plan was to stay for the evening parade and fireworks and it worked well.  Below, Malcolm is beaming as he watches the electrical parade.  He loved both the parade and the fireworks.  The next photo shows Malcolm about five minutes after the fireworks ended...since the stroller we rented at Magic Kingdom did not recline at all, Jan had to carry him through the park and all the way home (involved a lot of walking, a monorail ride, more walking and a shuttle bus ride...).

 

The next day, we thought we would play it by ear and if they kids seemed really tired we would take a day off.  However, they were up bright and early and seemed in good spirits so we had a quick breakfast, packed up our lunch and snacks and were on our way back to the Magic Kingdom.  We had gone on some rides the day before and the disability pass and stroller tag had been a great bonus once again.  However, the park had been very busy and there were a couple of rides in Fantasyland that were just too long even with the pass.  So the next morning we went straight there.  It was not nearly as busy and we got on the rides with almost no wait at all.  Then we went off and explored more of the park.  Below, the kids are having a great time on the teacup ride, and Donovan is steering our car on the speedway (Malcolm also enjoyed that).

I think Malcolm's most favourite thing at Magic Kingdom was a little 15 minute show we went to on the first day.  We once again had front row seats as Malcolm got to stay in his stroller.  It was the Magic Tiki Room show and it is really elaborate bird puppets that put on a little musical.  The birds look very life like and I'm sure Malcolm thought they were real.  He was so excited, making the "bird" sign with both hands and pointing like crazy the whole time.  It was very cute!

 We left Magic Kingdom around 5pm and by the time we got back to our suite it was past six so I made the boys a quick supper, we threw them in the tub for a quick bath and off to bed early to make up for the late night the day before and two busy days in the sun.  The next day, Thursday, we relaxed around the resort - swimming, playing mini golf, eating a slow lunch on our balcony etc.  It was a hot day so really nice to take it easy.  The most ambitious thing we did was go shopping at a few outlet stores in the afternoon - Malcolm fell asleep in the car on the way there and stayed asleep in his stroller for most of the shopping.  We ended up buying shoes for everyone - Donovan is delighted with his and wore them for the rest of the trip...

After our day of rest, it was time to depart our resort.  We were up early and left by nine.  Jan and Donovan squeezed in one more trip to the lazy river.  Then we were off to Legoland!  Below, Malcolm is wearing his Lego Star Wars T-shirt and standing beside R2-D2 made entirely from Lego.

 

Legoland is a new amusement park - a little over a year old.  Donovan and Jan had been to it last year with Jan's parents.  It was the hottest day yet and very sunny so we were careful to take advantage of many shady and air conditioned areas.  When we got there in the morning, the park was not busy at all - there were no lineups for any rides so we quickly went on several.  It was a lot busier after lunch.   Below, Malcolm loved driving his own boat and everyone enjoyed the carousel.

 

 Below is a shot of how Malcolm rode all the roller coaster rides in Legoland - no hands!  He must've seen kids doing this at Disney and decided it was the way to go.  He was able to go on some fairly big rides as he is 38" tall and the cutoff for many was 36".  Don't worry - Jan kept a tight grip on him on every ride.  No knowing when Malcolm may take a notion to stand up or decide to climb out!

That night, we went to a hotel near Tampa and the next day met my Aunt Lynn and Uncle Leroy for a very nice brunch.  Then we explored a conservation area with really interesting wildlife, including tortoises and alligators.  We saw couple of alligators in the water from a safe viewing distance.  Then, we were walking along a path and Donovan ran a little ahead.  He stopped and pointed, very excited, and said there's an alligator!  I ran over to him and there was an alligator all right - a really big one about 8 feet from the path, down the embankment on the edge of the water.  I hustled Donovan back along the trail and was too scared to get close to it again - not even to get a photo!

Then it was to the airport (we flew in and out of Tampa on WestJet) for our 8:30pm flight.  Everything went really smoothly but it was past 2am but the time we got to our house.  Malcolm slept the entire plane ride (one minute he was excitedly pointing out the window at take-off and the next he had nodded off).  Donovan slept a bit on the plane.  Both boys fell asleep in the car on the way home and stayed asleep till 9am (Malcolm) and 10am (Donovan) the next morning, for which their parents were very grateful!

All in all, we had a great trip and it worked out really well with Malcolm.  We don't normally ask or expect special treatment because of Malcolm's needs but I don't think we would have been able to have such a good time at Disney without the disability pass so strongly recommend that for anyone traveling with a young child with with special needs.  I'm not sure if Legoland has something similar (their website says not but then I saw a family that seemed to have one) but we didn't need it as it was not a busy day there. 

It was back to real life and our busy routine today.  But it sure is nice to look at our photos and remember our good times in the sun....

Mary Ellen

Nice Story

I had intended to post a link to this story last November but never got around to it.  There is something about it that almost makes me cry every time I read it.  I guess it describes what we want for our kids who have extra challenges - acceptance and support from their peers and their community.

We have been doing well and one member of our family is getting extremely excited about his impending birthday...

Photos

I'm finally sharing a few photos.  The first few were taken just before Christmas:

 - Malcolm got his new glasses a few days before Christmas.  While he looks happy in the photo he actually really dislikes wearing them - so far, he as worn them very little but I will have to bear down and focus more on that challenge....

 - the boys dressed up in aprons and oven mitts - I forget if they were pretending to be boxers or superheros but either way it was pretty cute

 - the boys dressed up in the Christmas sweaters for a party

 - making Christmas cookies, an annual tradition

 - Malcolm having fun on Christmas morning

 - a couple of photos of Donovan skating at the outdoor oval in Halifax - near our house and a great place to go.  Special ice machines maintain the ice up to plus 10 degrees Celsius outside

 - did not get a photo of Malcolm on his little bobskates with his helmet but this is Malcolm after he finished skating, on the sidelines ready to watch his brother and Dad go whizzing by

Mary Ellen

Happy New Year!

Hope all our family and friends found a great way to ring in the New Year.  I thought I'd take a moment to share some key achievement's of this blog's namesake.  In 2012 Malcolm:

• Started saying some real words.  He says several words consistently (no, ya, bye-bye, more) and will say many others with prompting and encouragement.  We are continuing weekly speech therapy sessions.
• Moved to the senior preschool room at his daycare - the last stop before public school next year.  He gets along well with his classmates and learns a lot from being included with all the other kids.  He is surrounded by many great little role models!
• Moved to a big boy bed.  We kept him in his crib as long as possible but he kept rolling around and banging various body parts on the side so it seemed past time to move him.  He has been doing great - settles down well at night and usually stays in his bed all night (though seems to have developed a habit of waking once and wanting a parent to go tuck him in again...not sure how to break that particular habit...).
• Played his first organized sport - soccer.  Just like his big brother, Malcolm played Timbits soccer every week.  A bit hairy at first, he seemed to manage better the second half of the season.
• Discovered electronics in a big way.  Adept with the TV controls and able to manage well on his Daddy's old iPod, Malcolm got an iPad for Christmas and it is amazing how well he can navigate it on his own.  We've already downloaded several apps for him - some meant to be 'educational' and others just for fun!

Some other neat stuff that Malcolm does:

• Gives his stuffed bear and stuffed dog a goodnight hug and kiss before carefully laying them down (facefirst) on either side of his pillow before he flops down for the night.  It has become an engrained part of his nightly routine.
• Goes up and down the stairs on his own.  Our stairs are bare wood and a bit slippery so for a long time I was too paranoid to let him go up and down on his own but he is actually really good at it and is quite good to hold onto the railing.
• Runs and gets his stool if we are doing something interesting in the kitchen.  Malcolm likes to help and doesn't want to miss out on the action so more and more he is joining in when cooking and baking are going on.
• Last month when I went to pick him up he ran over to the drying rack to get his artwork out and show it to me - the first time he has ever done that.
• We also got a Wii for Christmas (it was a big electronics year) but it is a bit beyond Malcolm at the moment.  When Donovan starts to play it, Malcolm runs to the counter, gets his stool, grabs his iPad and brings it in instead.  Very independent.

I could go on but you get the picture - Malcolm advanced by leaps and bounds in 2012.  His best friend, role model and cheerleader continues to be big brother Donovan.  We look forward to much continued progress in 2013.

Happy New Year!

Mary Ellen  

Almost ready...

for Christmas!  Donovan is very excited this year and has literally been counting down the days for quite some time.  We are done our shopping, except for some more groceries tomorrow.  This morning we went to the market which was very nice.  We stocked up on fresh vegetables and sausages.  This afternoon we went swimming at Cole Harbour Place - both the boys had fun.  Last night was movie night and tonight was games night for Donovan.  He chose SkipBo and won both games.

I mailed the last of our Christmas cards today.  I am late with all of my cards this year so if you have not received yours yet, do not be concerned as you are definitely not the only one.  Next year I will have to pay better attention in November and be better organized.  Otherwise, we are in good shape, although there is quite a bit of baking I'd still like to do.  Earlier this week Donovan and I made chocolate covered peanut butter balls and today we mixed up sugar cookies, which we will cut out and bake tomorrow morning.

You can read our Christmas letter here.

Mary Ellen

2012 Family Christmas Letter

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Holiday Greetings from the Rainey Family!

We had another good year in 2012.  Donovan successfully completed grade Primay (it’s what they call Kindergarten in Nova Scotia) and started Grade One in the fall.  He played soccer in the summer, and also participated in skating and swimming lessons.  Grama and Grampa Rainey looked after Donovan 3 days/ week in July and in August he attended two weeks of “Adventure Camp”, a day camp here in the city, which he loved.  Malcolm graduated from Blue Room 1 to Blue Room 2 in September, his last stop before moving to “big boy school” next year – he will be attending the same school as Donovan, which is just two blocks down our street.

Many of you know that most of summer and early fall was consumed with a renovation project.  We decided to tear out our bathroom and kitchen to make a small powder room and much larger kitchen on the main floor.  We moved walls, windows and doors to make it happen.  A few unexpected surprises were discovered along the way, but in the end we are very happy with how everything turned out.  Mary Ellen did all of the painting.  The boys were very good about all the upheaval.

Luckily, we were able to escape all the commotion for three weeks in August when we headed to Ontario.  We visited Camp Kintail and then it was off to the farm.  We had a great time seeing all our extended family again and enjoying life on the farm.  Jan left us for two weeks to go off to Europe to deliver a seminar at Oxford and attend a conference in Nice.  He also visited some family and friends in England and Switzerland to round out the trip.

Jan had a largely successful year at work securing some more grants and getting lots of research done.  He is looking forward to starting a six-month sabbatical in January, which means he will have no administrative or teaching duties – he can focus on research.  He will remain in Halifax for most of it but may travel for a few weeks at a time to Florida or the UK.

Mary Ellen is still working three days/week with no plans to go back to full-time work.  Her days at home are busy as Donovan comes home for lunch and Malcolm is accessing increased speech language and occupational therapy services.  Malcolm is starting to say some words which is very encouraging progress.  He has really stretched up over the last year and lost his “baby” look – he is all boy now!

Many thanks to all who visited this year and we extend an open invitation to others to come visit us this year.  We are looking forward to another healthy, happy year in 2013 and wish the same for all our family and friends!

Mary Ellen, Jan, Donovan and Malcolm