Frequent flyers

Malcolm had a doctor's appointment with his pediatrician on Friday at 5pm. He has an appointment on Tuesday morning at 8:45am at the eye clinic at the hospital. So he is starting and ending his Thanksgiving weekend with doctor's appointments. The good news is that both are just routine follow-up - no emergencies or even concerns to worry about.

We very nearly always see other kids (and their parents) that we know when we visit the hospital. Sometimes it feels a bit like a reunion as we may see several people we haven't seen in a while. This is great as it is often nice to chat a bit with someone who has been through a similar situation to what we have been through, or have some of the same ongoing issues with balancing a busy life with doctors appointments and health concerns. Sometimes it is nice just to see how great the kids are doing. We are always happy to see other kids that we know.

The not so great part of running into so many families we know at the hospital is that it's kind of a reminder that we're part of a club that we never really wanted to belong to. There are kids like Donovan who rarely darken a doctor's door and then there are kids who spend a significant amount of their time in doctors offices and hospitals. We see the same kids there time after time who, like Malcolm, are part of the latter group. The only consolation is that they often do grow out of it. We hope that in a couple of years we will almost never have occasion to visit the hospital, and even now it is much less than a year ago, and becoming less all the time.

I won't even mention the kids that we don't see anymore for the worst reason ever and whose absence leaves a hole in our hearts forever.

So for the most part we quite enjoy our visits to the hospital. On this Thanksgiving weekend, I guess we can be thankful that we have such a great hospital to visit, that so many of the kids we know are doing so well, and that we no longer have to spend so much time there. All good things.

Mary Ellen

Blogs

There is a blog I enjoy reading. It is called Bringing the Sunshine and the blogger, Andi, is a gifted writer who presents a nice mix of personal stories with useful information. She weighs in on some pretty meaty topics like use of the R-word, eugenics and much more. I don't agree with everything she says, but find a lot of her writing to be quite thought-provoking. I encourage you to check it out and see for yourself.

I read a few of the blogs on the 31 for 21 site and I am struck by how personal and emotional many of the blog entries are. So if you are checking them out, be prepared that you may be swept away...

Mary Ellen

Bowling

Today Malcolm's daycare class went bowling. They took the city bus. From time to time the daycare has outings like this. Apparently Malcolm had a really good time. The staff took some photos and will be displaying them in the classroom so I'm looking forward to seeing those.

Just a quick post tonight as I am actually going out - socially - on a Thursday night...amazing how after kids this becomes such a rare occurrence...

Mary Ellen

Class

Today I volunteered in Donovan's classroom for the second time. It was great - the kids were working on their reading. It is fun to see how his primary (kindergarten) class functions and to get to know some of the other kids. Donovan is not very chatty about school so it is like pulling teeth asking him questions about his day etc. But he is very happy and excited that I am a "special visitor" sometimes. Overall Donovan seems to really like school and he likes his teacher - who is a Mister - a very fun guy and a great role model for the kids.

I'm going to go again next Wed afternoon. It makes for a busy day because Donovan has gymnastics at 4pm on Wednesdays so we come home, have time for a quick snack, and then rush off. Malcolm has been staying at home with his grandparents which has been nice for him. There is no way I could volunteer in the class with Malcolm in tow - he would be like a whirlwind leaving a path of destruction in his wake...

We are bracing for two chilly days of single digit weather before it warms up again for the weekend.

Mary Ellen

EI and Daycare

Malcolm's Early Interventionist visited him at daycare today. She goes every couple of weeks to assess how he is doing and offer support to his teachers. I think this is a really great service. Malcolm's teachers are used to dealing with little kids and many of them are ECEs so their training includes a short overview of kids with special needs. But for most of them, Malcolm is the first child with Ds they have worked with. They simply don't have the experience or training to know how to make optimal use of their regular routines to promote his development in the most effective way possible.

It sounds complicated but it's not really. I have had the benefit of being trained by professionals that work with Malcolm over the past three years - PT, OT and Speech - but his teachers do not have the same sort of access or training. His EI also attends many of his appointments with us and of course she has a wealth of experience in working with you children with special needs. So his EI helps to bridge the gap for the daycare teachers. Some suggestions that she left today:

- when he's painting, allow him to choose his paint/paper and immediately reinforce his choice - opportunity to express himself
- pair words with sign
- encourage imitation - he does this well...continue to encourage turn taking
- slow reading/singing down - give time to join in
- pause at repetitive parts - give opportunity to verbalize/vocalize/gesture

We are lucky that Malcolm has always had great teachers who are willing to learn and excited to work with him - they see Malcolm as a welcome challenge to their abilities. So they tend to learn quickly and adapt their routines to better include Malcolm. We have come a long way since the early days after Malcolm was born and we were unsure whether a regular daycare would accept him...it goes to show how attitudes and practices have changed over the past couple of decades - for the better!

Mary Ellen

Speech update

Malcolm's speech therapist asked her technician to gather pictorial representations of all of the signs that Malcolm knows, so that we could provide it to his daycare teachers for them to use as a reference. We received it in the mail and I had to replace a few of them, as they were not accurate representations of the way we do the sign (there are often several versions of the same sign in ASL). I was able to find most of the ones I needed online. I decided to count them at the end and was shocked to discover that there are 65 signs in the booklet - plus there are about a dozen that are missing and need to be added. So my baby boy know signs for about 80 words. I was stunned - I had not counted his signs in a long time and was estimating that he knew maybe 40! The most amazing thing of all is that means that I also know 80 signs - unbelievable.

Malcolm will now say "baa" when he sees a sheep. He also tries to say other animal sounds like, moo, quack, oink, cluck, woof and meow with varying degrees of success. He loves to sing "ee-eye-ee-eye-oh" or something that sounds very much like it (you can guess his favourite song!). He says "Dah" every time he sees his Daddy and sometimes says "Duh" for Donovan. In August he said "Dah...Dee" for the very first time and has said it a couple of times since. He babbles a lot and likes to make sound effects like growling for a bear, roaring for a dinosaur and vrooming for a car.

So his verbal speech is slowly, slowly, slowly coming. Is this "typical" for kids with Ds? I have read, and been told, that kids with Ds are often 4 years old before their speech really takes off. But I have also seen and read about quite a number of kids with Ds whose verbal speech develops well before that - some are saying words before they are 2 years old, just like typical kids. And I have seen the huge variation in adults with Ds - those that can speak almost as well as you or I, those who can speak but have great difficulty in shaping their words so have limited verbal communication, and those who can hardly speak at all. We continue to hope for the best - that at age 4 his speech will magically take off and in no time he will be chatting away, and we will smile and roll our eyes and wonder why we ever worried about it...but more realistically I think his speech will continue to develop at a very slow rate and he will always have challenges in this department. It will be a work in progress for a good many years, possibly his whole life.

In the meantime, we will have a lot of fun singing Old McDonald had a farm....

Mary Ellen

31 for 21

It's October and time for the 31 for 21 challenge again. This is where bloggers who sometimes write about Ds are encouraged to blog every day for the month of October, as a way of raising awareness about Ds and promoting inclusion. I'm off to a rough start as I missed posting last night but will try to pull up my socks for the rest of the month...

Yesterday Halifax's "Walk with Friends" event was postponed due to weather but it is rescheduled for next Saturday. The aim of the walk is to promote awareness of Ds and raise funds for the NSDSS's Maritime Ds Family Camp.

Stay tuned for more news about the boys in the month to come...

Mary Ellen