Rainey Family Christmas Letter 2013

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Family Christmas Letter – 2013

This year was an eventful year – we experienced many wonderful things as a family.

In February we went on our first ever warm holiday to spend a week in Florida.  We went to Disneyworld – the Magic Kingdom and Animal Kingdom which was tons of fun.  Mary Ellen liked seeing the shows but the boys all liked the rides the best.  We also went to a manatee observation area, to Legoland and the Orlando Science Center to see a special Star Wars display.  At the end of the trip, we met Aunt Lynn and Uncle Leroy for lunch and a lovely visit, then stopped by a conservation area where, entirely by accident, we ended up a few steps away from a rather large alligator out in the wild!  (We beat a cautiously hasty retreat when we saw him…)   We had beautiful weather and a w onderful time. 

On June 6, we all left Halifax and headed to the farm.  We spent six weeks in Ontario seeing family and friends and enjoying ourselves.  We went on some great day trips and had some relaxing days with Grandma and Grandpa and the boys’ aunts, uncles and cousins.  We spent a great weekend in Toronto and made it up to Camp Kintail to visit my brother and his family.  We took in all the festivities of the local Canada Day weekend including seeing Grandpa in the parade.  Donovan loved the three-legged and wheelbarrow races and Malcolm loved the fireworks.

Then in mid-July it was back to Halifax.  Malcolm had his tonsils out and shortly after, Grama and Grampa Rainey arrived back in Halifax.  The boys spent the rest of the summer enjoying the outdoors with Grama and Grampa Rainey – digging at the beach, climbing on the playground, catching minnows in the lake and playing tennis and soccer.  It is hard to imagine a better way to spend their August days!

On August 20, 2013, we all welcomed Kieran George into our family.  He was born a bit late and it was obvious right from the start that he was ready to jump into life.  He has grown into a bit, strong, alert baby boy.  His brothers love holding him and talking to him and he is such a wonderful addition to our family.

This fall, Malcolm started Grade Primary (Nova Scotia’s version of kindergarten).  He is enjoying his class and gets great support at the school.  Donovan is thrilled that his brother is attending school and they are both having a lot of fun this year.

Both Donovan and Malcolm took swimming lessons last spring, and Donovan took skating and rock climbing lessons as well.  He also started piano lessons this fall, which he is really enjoying and doing well with. 

We will be at the farm for Christmas this year and are looking forward to that.  We are also looking forward to a visit from Grama and Grampa Rainey in Halifax earlier in December.  We are looking forward to our first holiday season as a family of five.  Our very best wishes to all of our extended family and friends!

MERRY CHRISTMAS! 

Jan, Mary Ellen, Donovan, Malcolm and Kieran

Happy Hallowe'en!

Just a few quick pics from last night...

Kieran snoozed through trick or treating so he stayed home with Daddy.  The boys and I went out with friends who live down the street - two boys the same ages.  The kids had a lot of fun.  Malcolm packed it in about halfway through - I brought him home and he was happy to have a drink of water and eat some cheesies on the couch.  Malcolm was a storm trooper in the evening and had dressed as a superhero at school earlier in the day.

Kieran is a little over two months old now.  He is big for his age but also very strong.  He is generally a content little guy who is giving us more and more smiles, with hopefully many more to come.

Mary Ellen

Six Weeks Later

A quick update on Malcolm's little brother.  Kieran was six weeks old on October 1.  I had him weighed the day before and he was a whopping 13 lbs, 13 oz!  That puts him around the 95th percentile.  I'm not sure how long he is but he must be pretty long because he has outgrown almost all of his 3 month size sleepers and comfortably fits into 6 month sleepers.  He is chubby and generally just one big boy.

Malcolm and Donovan continue to really enjoy their brother.  Donovan asks to hold him every day and will sit and rock him for 15 minutes at a time.  Malcolm is also keen to hold him but loses interest after a couple of minutes (note that that it is difficult to maintain Malcolm's interest in much of anything for more than a few minutes, unless said something includes a screen...).

Overall, Kieran is fitting into our family really well - his presence does not seem disruptive and adds more richness and interest to our lives.  We are all so happy to have him with us!

Mary Ellen

Update on Advocacy for Early Intervention Services

As many of you may recall, I am involved in advocating for improved "early intervention" services for children with special needs aged 0 - 6 years.  Malcolm has benefited greatly from these services and would have realized even greater benefits had more been available to him.

This has become an election issue here in Nova Scotia.  Earlier this month, the Liberals pledged $2.6 million in new money to reduce wait times and fund core early intervention services (which currently rely heavily on fundraising to supplement government grants).

Today, the NDP announced a $6 million campaign commitment to improve early intervention services. They will also reduce wait times and better fund core services.  In addition, they will pilot a project to help families navigate the system, provide easier access to respite care and better coordinate service delivery for families who have more than one child with special needs. 

I was at both announcements.  I was quoted in the Halifax Chronicle Herald regarding the Liberal announcement and our whole family Jan and I were shown on the CTV coverage as well.  Fast forward to 1:32 if you don't want to watch the whole clip about the election.  was shown on the Global TV coverge tonight.  We are hoping there will be some newspaper stories tomorrow.

We are thrilled that this has become an election issue and are hopeful that, regardless of who is elected, significant improvements will result.

Mary Ellen

Big Events in September

This month is flying by.  I wanted to share a few photos...

The boys on their first day of school.  It was a very wet day so Malcolm was able to wear his yellow boots, which he loves.

Happy Birthday Malcolm!  Malcolm turned 5 on September 13 and we had a little party for some of his little friends.  It was a Mickey Mouse themed party as Mickey (or Kick-ee as Malcolm says) is his current favourite...

Donovan holding Kieran on Kieran's one-month birthday.

Mary Ellen

Terry Fox 2013

On Sunday Team Malcolm participated in the Terry Fox Run in Halifax.  It was another great day at Point Pleasant.  We raised more this year than the two previous years so were very pleased about that.  Malcolm, Kieran and I did the 1 km route and Jan and Donovan did one loop around the route, which I believe was 3.3km.  Both sets of grandparents were there to help out.  Lauryn and her friend Amanda also ran with Jan and Donovan which was great.

Everyone had a good time and we plan to do it again next year.  A HUGE thank you to all who supported the cause by donating to Team Malcolm.  For those of you who support cancer research in other ways, big thanks to you as well. 

Terry Fox had a big dream and we're happy to support it.  Families of kids who are journeying through cancer need us all to dream big.

Mary Ellen

Introducing Kieran George...

As you can see in the following photos, he has two very proud and very excited big brothers....

In the hospital, Donovan had some time with Mommy and Kieran before Malcolm arrived.  He was so excited to hold his new brother!

That look pretty much sums up how Malcolm felt about his short hospital visit - a bit freaked out by the whole thing.  

 

Here's Kieran at about one week old.  Such a handsome fellow!

 Both boys enjoyed giving Kieran a bath on the day he turned one week old.

Look closely and you can see Malcolm with his finger to his lips shushing the baby (who was crying as he was getting dressed after his bath).   Malcolm doesn't appreciate a noisy baby and frequently tries to shush Kieran if he has the nerve to be too loud.

 These photos show how excited Malcolm can get to 'help' with Kieran.  Little Kieran is so lucky to have two such wonderful brothers that are so happy to help look after him!

We are all doing well and enjoying baby.  He will be two weeks old tomorrow (evening).  How time flies!

Mary Ellen

Donovan Update

I thought that since last week's post was all about Malcolm, I should say a few words about his biggest booster and supporter, Donovan.  Donovan had a very successful year in grade one and I think he will continue to have good academic success.  His favourite subject (other than gym) is math and he is very good at it. 

Donovan really enjoys biking, swimming and playing soccer.  Unfortunately, he was unable to join a soccer team this summer as we missed too much of the season being away in Ontario.  However, we are trying to give him lots of opportunities to bike and swim.  He is very excited that Malcolm can now ride a bike.

Donovan is extremely excited about the pending baby and proudly tells people that he will be a big, big brother while Malcolm will be a big brother and a little brother.  He keeps trying to convince Malcolm that there is a baby in my tummy but Malcolm remains skeptical.  Donovan asked how I would know if the baby was ready to come out and I said my belly would start hurting.  He now asks me several times a day if my belly is hurting yet!

Earlier this spring, Donovan told me that he hopes the baby has Down syndrome.  I asked him why and he said so that Malcolm would have someone to play with when he is a grown up and someone he could talk to (Donovan is under the impression that Malcolm's babbling is some sort of alternate language that other people with Ds would be able to understand...).  I told him that while it would be ok if this baby has Ds, I am actually hoping that it does not.  I pointed out some of the advantages of having a sibling without Ds and spoke about how Malcolm would have friends, etc when he is grown up.  I think I managed to convince him of the merits of a new sibling without Ds but I guess that's proof positive that Donovan still doesn't see any negative aspect of Ds. 

I think Donovan's concerns for Malcolm's future were sparked by a discussion they had in class about people with special needs.  The class read a story about an adult with an intellectual disability who lived in a group home and I think that may have been the first time that Donovan really realized that Malcolm may not 'catch up' in every respect to him and may continue to need some extra help as an adult. Great that the class had this discussion.

Donovan is a big help to me at home - great at helping with Malcolm and also quite capable (though not always entirely willing) of doing chores around the house.  This afternoon he put away all of his laundry and vacuumed the living room carpet for me all by himself.  He often helps Malcolm get dressed in the morning and will even help him change a wet pull-up.  He has also, on occasion, brought Malcolm downstairs and made him breakfast (toast with jam or reheated pancakes and syrup).  He did lots of helping on the farm and is turning into quite a useful little guy!

Perhaps the greatest thing about Donovan continues to be his positive attitude and enthusiasm for just about everything.  It makes him a lot of fun to be around.

Mary Ellen

Back in Halifax

We're back in Halifax.  We spent over a month away, visiting my family in Ontario.  It was a vacation for myself and the boys and a working holiday for Jan - he was on sabbatical and can work from pretty much wherever he wishes.  I think he was pleased with what he was able to accomplish.

Too many great things happened on the trip to even begin to describe so instead I will provide an update on how Malcolm is doing.  He will turn five on September 13 which is hard to believe!

Malcolm is learning to spell his name in capital letters.  This was a big focus of OT over the past several months and they gave me several great tools to help Malcolm accomplish this goal.  He is getting close.  He recognizes and can name most of the letters in his name.  We are playing games that help reinforce how to order those letters in the correct order, and we are working on how to actually print the letters.  He can consistently print M, O and L.  He still needs a bit of prompting for A and C but we are getting very close!

Perhaps the highlight of our trip was that Malcolm has learned how to ride a bike (a three-wheeler)!!!  We took his little bike with us to Ontario because my parents have a great cement pad right by their front porch.  However, after many days of moving his feet on the pedals and trying to get him to move on it by himself I had just about given up and was starting to resign myself to the fact that it would likely be next year before he would learn.  Then one day his Dad came out and was working with him and all of a sudden it just clicked - he was riding.  You can view a bit of footage from the very first day of biking independence here but I really like the video below that was taken a few days later....

Malcolm's speech continues to slowly emerge.  He now consistently says Daddy and Mommy (or some close variant - often da-da and me-me) which is music to my ears.  Just last year I was wondering if I would ever hear his little voice say my name and I do not get tired of hearing it.

Malcolm seems to understand that he is going to "Big School" in the fall.  He has a nice book that the learning centre teacher made for him that has several pictures of the school and his teachers and several photos of him in his classroom, etc.  We are still trying to sort out how much support he will get and things like that but I think it will all fall into place soon.

Malcolm does not, on the other hand, understand that he will soon have a new brother or sister.  He thinks it's funny when we tell him there's a baby in my tummy and shakes his head no - he just doesn't believe it!  But we talk about a baby quite a bit so hopefully it won't be too much of a shock for him...hopefully just a few more weeks to wait...

Malcolm had his tonsils out on Friday.  He also had the tubes in his ears removed - we were surprised they were still in there!  There were over three years old and the doctor said the tissue around them was quite irritated - he had so much wax buildup in his ears that, despite having his ears looked at by various doctors on a regular basis, no one had been able to see them in well over a year!  So good thing he got that cleared up as well.  Malcolm did really well initially in recovery, taking his medicine and drinking a bit.  They were almost ready to send us home but decided we should wait a bit longer.  Then Malcolm stopped drinking and absolutely refused to drink anything else for the next four hours!  So we ended up staying overnight in hospital to make sure he stayed hydrated.  Just before bedtime he decided to drink so that was great - we were able to go home the following morning.   Today he seemed to feel really well and his eating greatly improved so I think he is pretty much recovered.  I am supposed to keep him fairly quiet for the next few days so that the wound does not reopen so that will be a challenge but it is supposed to rain tomorrow so it will be easier to keep him contained inside...

We are having a great summer and enjoying being back at home in Halifax.  The weather has been quite hot so we have been keeping cool and enjoying the outdoors as much as possible.  I am not returning to work until next year so am really determined to enjoy this time with my boys before I get busy with the new baby.  Today I was brave and took the boys by myself to a small local beach near our house for a couple of hours.  It went really well and was a good activity.  It was a perfect beach day - sunny and hot but not too hot with a nice breeze.  Hopefully there are many more such days to come before summer ends...

Mary Ellen

Transition Planning

I haven't been posting much lately but we have been very busy.  Jan was away for three weeks in April and a week in May so have been "solo parenting" quite a bit.  The boys have generally been quite good for me which has been a big help.  The highlight of April was an extended (10 day!) visit from my parents while Jan was away.  It was great to see them again and the boys had a lot of fun with them.

There has been a lot of activity centering around Malcolm starting school next fall so my days off have been filled with appointments.  He is still going to speech therapy weekly and OT every two weeks.  He has had some additional assessments leading up to school.  He has had some check-ups (eye clinic, pediatrician) to monitor ongoing issues.  He has been to physio to get customized footplates for his new shoes (similar to orthotics). 

Added to that, we have been to the school that he will attend next fall, Sir Charles Tupper, several times.  We had an enormous transition meeting on May 3.  By enormous, I mean a lot of people.  He was VERY well supported by his current 'team'.  Three staff from the daycare came (they were very interested to attend as this was the first time they were invited to a transition meeting, even though they are a large daycare and have had some kids with special needs in the past).  His Early Interventionist was there, as was his Occupational Therapist (and one of her students).  Then there was the 'school team' which comprised of his primary teacher, learning centre teacher, principal, speech therapist and school board rep (who is a key person as she decides how much in the way of resources each school gets to support students with special needs).  Jan attended with me.

I was a bit worried that there might be too many people attending and that the meeting would veer off topic too much but felt it went really well.  Everyone there did a really good job of making the case for why Malcolm would need full-time support (ie a full time Educational Assistant).  In Nova Scotia, the conventional wisdom is that full time support is usually only provided if a child is a significant flight risk and needs a lot of assistance with toileting.  Malcolm fits both those criteria so a fair bit of information was shared to make those points plus some other areas where he really needs support were highlighted.  A lot of really good information was shared with his new teachers by OT and Speech. 

Since the transition meeting, Malcolm has visited the Learning Centre a few times to get familiar with it.  He also visited the Grade Primary (that's what they call Kindergarten out here) classroom for half a morning and had a great time.  He continues to play at the playground a lot on the days we're home and pick up Donovan at lunch and after school.

I've also been sorting out before and after school care.  I had been planning to send the boys a couple of days a week to the program that Donovan has been attending on the days I work.  I was crushed to be notified that they will not be offering their program next year.  It was such a great place for Donovan and it is the only program at their school that accepted kids with special needs.  In theory, I don't need anything like that next year but in reality I know it will be nice if the kids could have something to go to a couple of days after school to give them some more social time/opportunity to burn off energy and to give me some afternoons where I can stay home with the baby - who may well be less than a month old when school starts!  I have enrolled Donovan in a different program for two afternoons/week and it looks like a shared babysitting arrangement will work out for Malcolm a few afternoons/week so am feeling better about that side of things as well.

So, a lot has been going on.  Add to that increased volunteer workload (I'm now on the fundraising committee as well as the Board for the Progress Centre and helped create the Parent Advocacy Group that made the video) and I have had a very busy spring.  But it is all a good kind of busy and have been feeling pretty positive about everything.  Malcolm's new school is very welcoming and supportive and I know he will do well there.  He will be so excited to go every day with his big brother!

More soon on how Malcolm's skills have been progressing - he has made many great advances lately!  Also an update on Donovan.

Mary Ellen

Advocate

I have been involved in a parent advocacy group advocating for better early intervention services for young children with special needs.  In our province, they are really lagging in how they deliver some services, for example, not delivering any therapies in the home or daycare environment, and there are far more services available to kids with an autism spectrum disorder diagnosis.  So we've been writing letters to government and are trying to raise broader public awareness through a video which you can view here. 

Please take a moment to look at the video and share it with others.  We are trying to get lots of "hits".  Some of you will notice that quite a few of the photos at the beginning of the video are of Malcolm, as well as one or two at the end.  Donovan also makes a couple of appearances.

Thanks for watching and helping to spread the word!

Mary Ellen

Easter Update

A few Easter photos above.  Malcolm surprised everyone by insisting on getting dressed before going downstairs to hunt eggs.  He is wearing his new Easter present - a dinosaur shirt.  Donovan got dinosaur PJs but is not modelling them in picture above.  Malcolm took a relaxed approach to egg hunting while Donovan took it very seriously - he was so excited.  Both kids enjoyed eating the eggs.  A first for Malcolm as he has only recently decided that he likes chocolate.

Donovan lost his two front upper teeth but one of the adult ones is growing in quite rapidly so he only had a few days with a great big gap.  Still gives him a different look though.

Malcolm has been having sleep issues since last fall - restless sleep, waking up a lot, etc.  First we thought it might be his stomach/bowel bothering him again, then we were sure it must be his teeth.  Both checked out fine but dentistry referred him to ENT.  I thought maybe his adenoids had regrown.  When he was about a year and half old, he woke a lot due to sleep apnea caused by very enlarged adenoids. He had them removed, but there is a risk that they can grow back.

But no - this time the culprit is his tonsils.  They are enlarged and there is a little piece growing down his throat.  The doctor thinks his tonsils are a bit too zealous in reacting to potential threats which is why they are enlarged.  She thinks the piece growing down his throat is putting pressure on his tongue and may be the reason he is having sleep issues and why his tongue has been sticking out more this past year then when he was younger.  So the conclusion of this story is that his tonsils are coming out.  Good news is that he is eligible for a new, less invasive procedure with a faster recovery time and fewer complications than the traditional method.  

I have mixed feelings about the need for surgery.  On the one hand, it's upsetting to think of him in the hospital again feeling miserable.  On the other, I am really excited that we may have found out what's causing the sleep issues so that soon (meaning in a few months, as the surgery will likely be in July) we will all be sleeping well through the night again.  Dare to dream...

Mary Ellen 

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