Happy Hallowe'en

I really dropped off in posting the second half of this month but thought I'd share a few different thoughts tonight.  First - a brief overview of Hallowe'en Day 2102:

After Donovan went to school today, I took Malcolm to his speech therapy appointment.  Then we dashed over to the hospital to meet the OT technician, Lori, who will work with Malcolm for an hour every two weeks, or every week if we want it, till he goes to school.  Just as I was about to park at a metre across the street from the IWK, it started to absolutely pour.  So I quickly went over to the indoor parking garage, which was a mistake.  It was really backed up with cars and we ended up parking on the roof so were exposed to the elements anyways - so a complete waste of 10 minutes!  At this point we were running late but we ran into a friend from our days on the oncology inpatient unit in the elevator, and then another friend from the same place when we got off!  So chatted for a couple of minutes but really unfortunately could not talk for longer as Malcolm started to run off and by this time we were almost 15 minutes late for the appointment...

So we met the OT tech who is lovely and great with Malcolm.  He had just completed the first couple of activities when suddenly the power went out.  We were in an interior room with no windows which opened onto a hallway with no windows so it was extremely dark.  We waited to see if the emergency power kicked in (obviously there are supposed to be generators - this is a major children's hospital for goodness sake!) but then decided we should make our way to the front doors where there would be natural light.  Luckily OT tech had grabbed hold of Malcolm as soon as the lights went out so he was safe.  It was so dark I could not see even my hand in front of my face.  After we went down the hallway another staff came along with a flashlight and helped us to a main hallway where there were some really dim emergency lights and from there we made it to the front lobby.  We waited about 10 minutes but the power did not come back on so decided to leave. 

The power was only out to one of the three hospital buildings (for those familiar - Children's site was down, but the Link building and Women's had power).  Unfortunately, the parking building also had no power.  That's right - I had to carry Malcolm up seven flights of stairs.  Those of you who know him are asking why he didn't climb them himself since he is capable?  It was getting close to lunchtime and I was concerned I would be late for Donovan if there was a long lineup to get out.  Malcolm is very capable, and actually really enjoys, climbing stairs but speedy he is not.   Luckily, it was not busy leaving and we were able to meet Donovan with time to spare.

Donovan came home for lunch then we all got into our costumes (Darth Vadar, dinosaur and witch - see photo above) and headed to Donovan's school for his party.  There was a big parade in the gym and then each class had their own party.  Malcolm did fairly well for a while then started to get tired and lose interest so the last bit seemed a bit long as I tried to keep him entertained and out of trouble.  I met one of Donovan's new teachers for the first time and she chatted to me about her adult son who has special needs so that was a nice connection to make.  Not knowing these teachers, I had been a bit concerned that Malcolm might not be totally welcome but I need not have worried!  All the staff are always very welcoming of Malcolm.  There were several other preschool siblings of other kids also their with their moms so we didn't really stand out at all!

After a bit of playtime outside after school, we had a quick snack at home then off to see Malcolm's pediatrician for his flu shot.  Donovan did not get one as he is having day surgery on Friday and I did not want to risk a fever developing and delaying that procedure.  We picked Daddy up on the way home, had a quick supper and then got ready to go out trick or treating.  Malcolm did really well but after a while wanted to go home.  Donovan and I stayed out a bit longer but we got wet by the rain, which had held off for quite a while but then poured.  Luckily we were close to home.  Donovan was very happy with all the treats that he got...

Since this post has turned out to be so long, I will publish one final post about 31 for 21 either later tonight or tomorrow...stay tuned!

Mary Ellen

Great weekend

We had a good weekend but busy.  Yesterday I made a batch of cupcakes before breakfast, then took the boys to a little puppet show at the library.  Both of them quite liked it and Malcolm actually sat with me for the whole show which is a stupendous improvement over last time, where he sat for about 2 minutes of the show!

Then we hit the dollarstore for Hallowe'en stuff on the way home.  A quick lunch and then Jan actually got Malcolm to nap (he has been way overtired lately) and Donovan did some quiet activities while I cleaned and tidied.  Donovan and I also did some decorating.  Jan went grocery shopping and after Malcolm got up we vaccumed the downstairs.  Then Jan made supper while I decorated the cupcakes and the kids mostly watched TV.  After dinner Malcolm went to bed but Donovan and I went for a walk to look at some of the houses that were decorated for Hallowe'en.

Today we went to church and then after a quick lunch the boys all headed outside to play while I tidied and got organized for Donovan's Hallowe'en party!  Donovan had six little friends over (actually that includes a little brother of one friend that is Malcolm's age) and they had a great time.  They were all dressed up in their costumes.  I had quite a bit of stuff organized for them - bobbing for apples, eat a donut off a string, two crafts and dance contest (to Monster Mash and Ghostbusters).  We had a fruit tray and cupcakes for snack and we didn't even have time for Bingo!

The only mishap during the party was when the kids were dancing and one of them managed to knock Jan's computer off the couch which torpedoed through the glass door of our TV cabinet.  Luckily no one was hurt and the glass did not make much mess.  Have contacted the carpenter who built it for us and he is going to fix it for us asap so no real harm done.

After the big excitement we were pretty tired and had the boys in bed by 8pm but then I sat down for another session of filling out forms for Malcolm's upcoming psych session.  Five forms, hundreds of questions (mostly multiple choice, thank goodness!).  The purpose of the psych assessment is to figure out cognitively what Malcolm's strengths and weaknesses are and get some advice on how to help stimulate development in those areas where he may be weaker.  Hopefully also some strategies on how to overcome some increasingly difficult behaviour....

Long story short, after several hours the forms are filled out and ready for Jan to drop them off tomorrow (since he works across the street).  Looking forward to sleep tonight,

Mary Ellen

R-Word

I had not realized so much time had passed since my last post - not doing a great job this year of blogging every day for the month of October.

Just a quick post tonight to encourage you to read this story and click on some of the links.  Some of you may have heard of the "Campaign to end the R-Word".  Basically, it is a campaign started by families of people with Ds to stop the use of this word.  One of my favourite blogs, Bringing the Sunshine, has several posts on this topic.  If you ever hear anyone use that word, please politely explain that it is hurtful and a real put down to a very vulnerable and undeserving group of people.  There is no excuse for using that word!

Mary Ellen

Fall Fun

Today we went to Windsor to see the Pumpkin Boat Races for the first time.  There is a Parade of Paddlers through the downtown followed by the pumpkin boats racing on the water.  They also had festive activities for the kids like bouncy castle and giant cookie decorating.  It was a really great day.

We got there around noon which was perfect - we got a good parking spot downtown, just as it was starting to get busy.   We walked along the waterfront and did some of the kid stuff before it was very busy, as most other people were lining up for the parade.  Then we headed up a block or so to see the parade and had no trouble getting a good spot with great visibility, even though there were tons of people there.

The parade ended but I had noticed a nice looking italian cafe that we had walked past so we went down there and got a table and had a fantastic little lunch (we had two very well behaved boys!).  It was good to warm up because it was very cold today - above zero but not by a whole lot and on the verge of raining all day long (it was raining in Halifax but luckily held off in Windsor).  We finished our lunch and headed back down to the waterfront just as the first race was starting.  Again were able to squeeze into a great position to watch the races.  We left before they were all over so avoided any major traffic congestion.

We headed straight to a fantastic pumpkin patch - the biggest I had ever seen for sure.  Got some pumpkins to carve for Hallowe'en and some great pumpkins and squash for eating.  There were dozens of varieties to choose from!  The bottom photo above is Donovan sitting in a sample pumpkin boat they had at the patch.

We came back home and finished the day with a really nice supper - roast chicken legs with potatoes, carrots and squash, and a freshly baked pear and apple cobbler for dessert.  Perfect.

Mary Ellen

Typical

Today was a typical "home" day.  I work three days/week and am home two days (plus weekends, obviously).  On my home days Malcolm stays at home with me all a day and we pick Donovan up for lunch.  This is what we did today:

Get up.  Shortly after, Daddy leaves for work.
Eat breakfast.
Running late - Donovan brushed teeth but skipped Malcolm, who insisted on eating a giant second bowl of cereal.
Walked Donovan down to school.  Walked back home.
Potty time.
Time to go to speech therapy - 45 minute session located 5 minutes from our house.
Errands - Staples and Superstore.
Home to put away groceries and potty time.
Time to walk down and pick up Donovan for lunch.
Walk back home.
Make lunch.  Eat lunch.  Playtime while I tidy up.
Walk Donovan down to school.  Walk home.
Potty time. 
Quiet time (which today was watching TV).  Time for me to run around the house and accomplish a few chores.
Time to pick up Donovan from school.
Play outside school (today it was one whole hour).
Walk home.  Eat snack.  Playtime.  Donovan played with geometric block shapes in the living room and Malcolm looked at books at the table.
Potty time.
TV time for kids.  Time to make supper.
Daddy comes home.
Eat supper.
Tidy up living room.  Time to brush teeth, go potty and have bathtime.
Story time (separately, for each kid).
Bedtime.

The kids are usually in bed by 8pm during the week so that leaves the evening for Jan and I to catch up on stuff - whether it's housework or "real" work.

The above does not illustrate the several tantrums and meltdowns Malcolm experienced today (he seems to be teething), nor the complete lack of success on going on the potty today.  But all in all it was a pretty good day, and pretty typical for us.

Mary Ellen

Scared

For the first time ever, Malcolm got really scared while watching TV.  It was during Harry Potter which we watched on the weekend as a family.  Malcolm seemed to quite like the movie, which surprised me as it isn't a cartoon.  At one point, however, he became very scared.  Jan noticed his expression and invited him over to sit with him and Malcolm went and buried himself in his Daddy's lap.  It was really cute, and also really interesting that Malcolm can absorb so much from the TV program.  Sometime I really underestimate how much he takes in...

Mary Ellen 

Happy Thanksgiving

I completely forgot that I had promised to blog every day this month and managed to miss two days this weekend but I guess that tells you what a good time we had...we had lots of fun with friends this weekend, missed extended family but had a great time.  The weather was really nice yesterday and today so went for a nature walk with the kids each day.  Also managed to bake a pumpkin pie and cook a turkey dinner, and treated Donovan to renting the first Harry Potter movie (we read him the first few books earlier this year).

Hope all you have as much to be thankful for as we do,

Mary Ellen

Brothers

These photos were taken on Donovan's first day of school this year.  It was pouring rain so we couldn't go outside.  It was actually a day later than I had thought - school started two days after Labour Day, not the day after.  So that left me scrambling for someone to look after Donovan for one day so that I could go to work.  Donovan's daycare offered that he could stay in Malcolm's room - they had one or two other kids Donovan's age doing the same thing.

Both boys had a great day.  Donovan stuck with Malcolm most of the day and helped Malcolm with anything he needed (and he taught Malcolm's teachers some of his signs!), but mostly it sounded like they had a lot of fun playing together.  Donovan continues to be Malcolm's biggest fan and best cheerleader - he is so excited when Malcolm achieves something.  Although Malcolm doesn't always do what his brother wants, he does try to do everything that Donovan does and he really lights up whenever he is around him.  They are lucky to have each other.

Mary Ellen

Ride the Wave

I wrote the following to appear in the Progress Centre's Fall newsletter:

One rainy Saturday in September I attended Ride the Wave, a Family Forum sponsored by the Nova Scotia Association for Community Living (NSACL), the Halifax Association for Community Living (HACL) and the Progress Centre.   The day consisted of several presentations by parents, caregivers, experts in the field and self-advocates.  There was also plenty of time for discussion and opportunities to talk to others present.  The day was a great opportunity both to learn about how to advocate effectively and to learn more about issues of shared concern.  I want to share with you a few thoughts I have coming out of the day…

When our kids are preschoolers, we are lucky to have the Progress Centre to help support us and introduce us to families of kids with similar needs.  To me, that has been one of the most valuable outcomes of being involved with the Progress Centre.  I worry that when our son enters the school system I will miss those opportunities to connect with other families.  One way to keep connecting is to get involved with an organized group like the HACL. 

However, the parents present at the event spoke of barriers to engaging with this type of group: limited time and the need to focus on dealing with the school system.  They also spoke about their feeling isolated and uncertain in dealing with the school system to get the support their children need.  One idea that was raised to help overcome these challenges is to form special needs parent groups at each school to support each other and share knowledge and information on how to navigate the system and resolve concerns.  What if more than one parent has a similar concern?  Several voices working together are more effective than one voice alone. 

What we need to recognize is that no one is going to organize this type of group for us – we need to get out there and take some action ourselves!  Once your child starts school, reach out to other parents, talk about what concerns you, and work constructively together to solve issues and provide each other with support and encouragement.   Connect with established groups like HACL to see what services they can provide or what advice they have to offer. 

Looking beyond the school years, when my son grows up, having benefitted from early intervention and an inclusive school environment, I want him to be supported to work at a meaningful job in the community and live as independently as possible.  I think that most of us Progress Centre parents share these types of goals. 

I don’t want my son to end up in an institution where he may be isolated, lack stimulation and be more vulnerable to abuse.  And yet that is where some adults with cognitive disabilities still end up.  Nova Scotia, unlike several other provinces, still maintains several residential institutions.  There is no clear commitment to close these places and increase support for community based services.  This is something that we should be aware of and we should be supporting the efforts of parents of older children who are trying to get the message across that institutional care is not acceptable.

There are many challenges facing families of children with special needs that other families do not face.  We need to get engaged, reach out to others and make sure our kids are able to live their lives the way they want and deserve to.

Mary Ellen

PFCC Award

Tonight I chaired a meeting of a committee to select the recipient of the third annual Award of Excellence for Patient and Family Centred Care at the hospital where Malcolm was born and receives all of his care, the IWK.  Winner(s) will be announced at the IWK AGM on October 24.  I helped start this award on my first year on the then-new IWK Family Leadership Council as a way to recognize and promote family-centred care. 

A lot of people questions what this means and assume that great hospitals like the IWK are already doing this...which they are, to a certain extent. 

What we're trying to promote is involving patients and families in making decisions about their care - collaborating with them rather than sharing recommendations and decisions after all the discussion has taken place.  This includes things like communicating information to patients or families in a way that is easily understood, including patient and families in making key decisions regarding care, ensuring families are included in multi-professional rounds and supporting them in participating in those rounds, and understanding the needs of patients and their families.

This will likely be my last year of involvement with this award.  Malcolm's health issues have subsided so I will likely focus my volunteer time on other activities once he's in the school system.  It's been a great feeling to help establish the award and influence who receives it.  It has been especially great to read all of the nominations that come in and learn about so many dedicated caregivers who are really doing their best to support patients and families.

Mary Ellen

Speech update

I have not given a speech update on Malcolm in quite a while.  Last spring, he started to try to say more words - a real breakthrough.  Unfortunately, it is almost impossible to understand what he is saying.  We can usually figure it out given the context but people who don't know him most likely would not even realize he wasn't just babbling.

We decided to ramp up the speech therapy.  He was only being seen once a month through the public system so we found a private therapist.  Her office is located close to our house, which is convenient.  The activities she does with Malcolm are similar to those of his regular therapist.  Malcolm seems to respond well to both and I think that it's beneficial to have the weekly sessions with a trained professional rather than just Jan and I struggling through a whole month...

This fall, he is being seen twice a month through the public system.  This is fantastic as we love his regular speech therapist.  We continue to see his private therapist on the alternate weeks for a slightly longer session than in the spring so it is a win for everyone I think.

But have the extra visits resulted in improvement?  This is very difficult to say.  Some days he tries to say words on his own and some days he does not.  He usually will try to say words if prompted by an adult (or sometimes his brother!).  He generally likes to do the word games that are suggested by his therapists to help with his pronunciation.  So we'll continue on as we are and really try to promote more speech development.

In the meantime, he continues to communicate quite well through signs, sounds, pointing, etc - let's just say he doesn't usually have trouble getting his point across!

Mary Ellen

31 for 21 (x3)

This is my third year taking on the 31 for 21 challenge.  I will try to add the "button" tomorrow but I do encourage you to follow this link and check out some of the many blogs of parents with Ds, or in a few cases, individuals with Ds, maintain.  The goal of 31 for 21 is to raise awareness about Ds.  The challenge is to post a new blog entry every day for the month of October.

Wish me luck!
Mary Ellen