Happy Hallowe'en!

I have one very photogenic pirate and one cat who was none too happy to be a cat. Once we got going Malcolm was a real trooper and did really well going up and down steps to people's homes (though it was a slow go...).

This ends 31 for 21. I hope this month gave my regular blog readers some food for thought about Ds and that you've enjoyed the opportunity to see and hear a bit more about Malcolm. The blog will be updated a couple of times a month, as before. We continue to grow as a family, we're all happy and healthy, and are thankful to have each other so life is good.

Mary Ellen

Judgements

We managed to get our pumpkins carved! In the second photo, Malcolm is dancing to some music with his Mr. Potatohead. Today is the second to last day of 31 for 21 and thought I would comment on a serious subject...

No one likes to feel judged simply because they happen to be the parent of a child with special needs (which could happen to anyone). It is particularly disappointing when it is members of the medical community doing the judging. There are two examples that really quite bother me when I think about them.

The first occurred when I was standing in a line up and overheard a few other moms chatting. One woman was pregnant and they were talking about her being almost 40 and having a child. Someone asked her about being worried about birth defects like Ds, and the pregnant woman replied that, since the screening had not shown signs of Ds, and because she did not smoke or drink excessively, her doctor had reassured her that her chances of having a child with Ds were very small. No doubt this doctor meant to offer reassurance to this woman but she did not choose her words carefully enough - this woman was absolutely convinced, and was spreading the word to others, that Ds could be avoided in some cases by lifestyle choices (which is completely false - there is no evidence that Ds is caused because the mother (or her eggs) have been exposed to particular substances). Apparently, some people believe that mothers like me get what we deserve because we haven't been living wholesome enough lives.

The second example is even more troubling. We came to know a family with a child with Ds who had much more complex medical issues than Malcolm - she was in hospital a lot and was receiving various treatments and therapies. She was diagnosed with a disease that was caused by some of the drugs she was being given that put her at increased risk of a particular type of injury (I'm being deliberately vague so that no one reading this story will be able to identify the family in question). On one break in treatment when the family was at home instead of in hospital, the child did suffer this injury and, of course, the family brought her to the hospital for help. The particular department that treated the injury had full access to the diagnoses of the child and the fact that this type of injury was likely to occur, but nonetheless chose to call community services and report a potential case of child abuse.

The family is quite sure that if this was not a special needs child, the hospital would not have reacted in the same way. There is a stereotype out there that parents of kids with special needs are more likely to abuse their children. I did a quick search though a medical journal database (PubMed) to see if there is scientific evidence to support this. It was difficult to find many studies (which probably means that few studies have been done). Of the few that I did see, some had a very small sample size and so their conclusions are not particularly robust. There were a couple that were broader but these did not conclude that all parents of kids with special needs are at increased risk of abusing their kids. They concluded that those parents already at risk of abusing their children (a small subset of the population) were somewhat more likely to actually do so if they had a child with special needs (I didn't make a note of references but if someone really wants to know contact me or leave a comment and I'll find them again). So there doesn't seem to be any really overwhelming evidence to support the stereotype.

I think it's really unfortunate that the hospital doesn't have better policies to make sure that profiling of this nature doesn't occur. This family had been doing well under really trying and traumatic experiences and they didn't need the humiliation of an investigation of their parenting skills on top of everything else (because they were in hospital at the time the investigation was ongoing, there was no privacy or confidentiality - all of the nursing staff and other staff involved in the care of their child knew about it). Parents of kids with special needs are all too aware that this stereotype is out there and it's very disheartening to think that we need to be worried that when we seek medical care for our child, instead of going into a supportive environment we may be going into an environment where people feel the need to scrutinize us extra carefully for signs that our child needs to be taken away.

I never imagined the incredible bond I would form with Malcolm and could never, ever imagine hurting him. I have never met a parent of a child with Ds who seemed to feel differently. And yet there are other people who, apparently, think we are blameworthy of something. I try not to let this bother me and assume that only a small proportion of people actually think this way, but I do think it's important for everyone to recognize that it's out there. If you ever encounter this, hopefully you can help set the record straight.

Mary Ellen

Fall Picnic

Today was the Progress Centre's annual fall picnic. We had a great day for it - not very warm, but very sunny and calm. It was a pretty good turnout and the boys had a good time. There was an entertainer who was putting on a little show for the kids - playing his guitar and singing interactive songs. Malcolm really liked it and did a really good job making all the signs he was supposed to. It was really nice to see. Unfortunately we had to leave just as the puppet show was starting as Donovan had to attend the birthday party of a friend (it was a busy day!). But we did see several people that we know - one family that we had not seen for quite a while so that was nice.

Tomorrow, we will have fun with costumes and pumpkins - Donovan is quite excited about Hallowe'en this year. Malcolm was running around wearing his new witch hat this afternoon...

Mary Ellen

Quick update

A few cute things Malcolm has done recently:

1. He has started saying something a lot like "bye, bye" when waving bye-bye to someone.

2. Last night he decided to clear the table - his Dad helped hand him dishes etc from the table and he trundled them over to me in the kitchen. He was very pleased with himself!

3. He and his brother have been dancing lots to ABBA - they both like lots of twirls.

Mary Ellen

Costumes

Today Malcolm and I went to look at Hallowe'en costumes. He likes to grab anything he can snag when we're out shopping and today he grabbed a purple witch hat with black lacy stuff all over it. It was a bit big for him but was really cute on his head and he was laughing away as he wore it around the store. So I got it for him - it will be a good addition to our stock of dressup clothes. I also found a fireman's shirt for Malcolm to go with his fireman's hat, a wizard hat for the boys, a batman shirt for Donovan - we already have a cape. And a black cat costume for Malcolm. All for less than twenty dollars, which is pretty good I think. Donovan already has a Hallowe'en costume but will enjoy have a few more items to play dressup with I think.

On the subject of dressing, Malcolm has taken a real interest in putting on his own clothes. He loves to sit down and put his own legs through the holes in his pants, then stands to pull them up (he needs a bit of help which he is unwilling to admit as he prefers to be independent). He has not figured out shirts so well but is getting there. Boots he perfected when we were at the farm in the summer (he refused to wear shoes for a couple of weeks). He has been able to do the "flip trick" with his coat since last winter and just needs a bit of help starting the zipper. So he is doing really well and is (rightfully) very proud of his accomplishments. So he should really enjoy playing dressup with his big brother...

Mary Ellen

Adoption

There are many couples in North America who are willing to adopt a child with Ds. In fact, there is such a demand that it is typically not difficult to find homes for infants with Ds. In the US, there is a real movement on to adopt children from Eastern Europe where infants with Ds are put in orphanages and at age 5 moved to mental institutions. This blog is just one example of many I have found of families who adopt one or more such children. There are charities and agencies devoted to this cause. Many of the families who adopt a child from overseas do so because they have a child of their own with Ds and cannot bear the thought of other children shut away in such awful institutions. Clearly there are many caring individuals who are trying to make a difference.

It is upsetting to think that it was not so long ago that Canadian society tended to shut away people with Ds in institutions. I saw a documentary at the CDSS conference I attended in Halifax the year Malcolm was born. It was about historical abuse of intellectually disabled people at institutions in Canada. It was so upsetting that I had to leave before it was over (and I wasn't the only one). It really drove home the fact that segregation of people who are different is not the answer. Most people are not likely to go to the extent of welcoming a child with Ds into their families through adoption but hopefully most people are willing to let children and adults with Ds into their schools, work places and neighbourhoods. I think we all have a collective responsibility to make sure that some of the most vulnerable people in our society will never again be shunted aside and subjected to such a horrible existence.

Malcolm is lucky that he will benefit so much from changing perceptions about people with intellectual disabilities. We have had very few negative experiences when we introduce Malcolm to people or talk about him with others. Supports and attitudes in the medical community, daycares and schools are all so much better than ever before and significant progress is being made on employment and housing or assisted living for adults. The future has never been so bright and hopefully it will just get brighter as he grows up.

Mary Ellen

Signing fever

Well, we made it through last night. Malcolm felt miserable all night with a high fever so did not sleep much but the fever is gone now so am expecting a much better night tonight. I think it was a reaction to this flu shot which he got yesterday. His arm is really red where the shot went in as well so likely his arm is sore. Jan has been away all weekend but of course now that he's back Malcolm will saw logs all night.

Malcolm did really well with his signing today - we are still trying to get him to pair more signs instead of just doing single signs. Today he used "want" quite a bit as in "want cracker", "want milk" etc. At lunch he was making these really elaborate signs with a lot of energy and purpose. He seemed to be saying that he wanted to go in the "car" "outside" to see a "cow". I have no idea what brought this on. When I said "Malcolm, do you want to go for a drive in the car to see a cow" he nodded his head vigorously and pointed "down" (meaning he wanted out of his high chair). Unfortunately I had to disappoint him and tell him it was time for his nap but he seemed pretty ok with that...

Mary Ellen

Pony

This is another photo from last weekend. Malcolm did not ride on the pony but had fun sitting on it and patting it gently for a few minutes. Donovan quite enjoyed his ride and thought it was great that Malcolm had a turn. We had a good day today too. The weather was great again and we spent quite a bit of time outside. We also carved one of the pumpkins - Donovan wanted to carve all three but it is so mild out I'm concerned they won't last long once carved.

Unfortunately Malcolm is feeling unwell tonight - alternating between chills and being really hot. Hopefully he is able to settle down and get a good night's sleep...

Mary Ellen

Making music

Malcolm rediscovered his music table in the basement so we brought it upstairs and Donovan helped him get settled in a snug little corner to play with it. Malcolm loves musical toys - the other item he has been playing a lot with lately is a battery operated saxophone toy. Malcolm holds it correctly, puts it in his mouth and kind of hums as he pushes the buttons to make noise - where did he learn all that? Malcolm can be very observant. The other thing he and Donovan have been doing a lot is requesting ABBA so they can dance to it together (very exuberantly) - too cute...

Malcolm had a really great week this week. Many days this fall he has been quite fussy when at home with me and needing a lot of attention but this week he was very content to play a bit on his own as well as "help" me with some household tasks - a big relief and hopefully something that will continue!

I kind've fell of the wagon this week in terms of posting but will try to do better for the rest of the month.

Mary Ellen

The Club

The above is advertising a special event for kids under 12 who have special needs or are siblings of a kid with special needs. Sounds great - the Wilderbeats are supposed to be really great. This event at "The Club" will be really great for kids with special needs and their siblings. A friend of mine was one of the founders of The Club. She has a background in working with adults with special needs and just a month or so before she and her family moved to Halifax her second child was born with Ds. So instead of finding a job she devoted a couple of years to volunteering to start "The Club", was one of the authors of a major grant that was successful last year and is now paid (on a part-time basis) for the ongoing work that she does.

I admire her immensely because she saw a void that needs to be filled in order to help ensure quality programming for her child and others many years down the road and she went ahead and went after it. Something I can only aspire to. If you live in Halifax and have young kids (under 12), come on out to see the Wilderbeats and have great time on November 12.

Mary Ellen





Pumpkin Patch

We made a trip to the Valley to Willowbank Farm today. We picked out some pumpkins and squash, visited a small petting zoo, picked some apples, had a hay ride and Donovan had a pony ride! Grama and Grampa Rainey came along too. Both boys seemed to enjoy it - the apple orchard was rough on Malcolm as he was determined to walk around and pick apples by himself, unaided, but there were so many apples on the ground he kept stepping on them and falling...only to get up with determination and grace and keep on going. He can teach us all a thing or two about resilience!

Mary Ellen

Down Syndrome Societies

There is some great stuff on the US NDSS website - in particular you might like the stories at this link. The Canadian CDSS website is also good. The UK counterpart is DSS. These organizations have been around for a long time and offer support to parents and individuals with Ds, and are a good source of basic info about Ds. Happy reading...

Oops I almost forgot to mention that Jan and his research lab are featured in a short video developed to promote the importance of one of the NS health research granting agencies (NSHRF). Happy viewing...

Mary Ellen

Family Centred Care

Last night I thought I had published a blog entry but it did not post properly so it seems to be lost forever. Luckily it was a fairly short one so no harm done. It was a quick update on what the boys are learning - Donovan has been counting by tens, threes and twos at home (for fun - he likes math!) and Malcolm is ready to learn his shapes I think - he can identify many different animals so I just need to make shapes fun (ideas?!) and no doubt he will catch on quite quickly.

So that's basically what I thought I had posted last night. I think I also made the comment that it is harder than I thought to write something on this blog every single night for a whole month. At any rate, on to tonight's topic...

I attended my monthly Family Leadership Council meeting at the hospital today. I'm a "family advisor" on the Council, which is comprised of representatives of patients and family who are receiving or have received care, as well as staff at all levels - upper administration, physician, nurse, other staff. The purpose of the group is to promote Patient and Family Centred Care (PFCC) at the hospital. Part of our time is spent on consults - providing advice on initiatives that various groups in the hospital may be considering. Part of our time is spent on devising ways to promote PFCC within the hospital, which is a huge culture shift. Most children's hospitals, and some adult hospitals, in the US and Canada have these types of bodies that are trying to promote patient/family advocacy and involvement in care, which ultimately leads to better outcomes, such as higher quality of care and a safer environment for patients.

I became involved with the group in 2009, about 8 months after Malcolm was born. Hearing the stories and experiences of some of the other family advisors, I hardly felt qualified to be a part of the group (several of them had had lengthy hospital stays and some had lost their children). Fast forward to today - I have no qualms about stating my views and hoping that they will be heard. I look forward to the coming year and promoting PFCC at the hospital so that other patients and families feel more valued and involved in their care. Surely it is a shame that this is not already embedded in hospital culture?

Mary Ellen

Local stuff

I found a blog recently that is based here in Nova Scotia that has info on it on community events geared towards those with special needs as well as some great legal info. It was nice to run across something so useful that is also local. There are many organizations here in Nova Scotia geared towards helping out people with special needs. An incomplete sampling:

Progress Centre
EINS
NS Association for Community Living
NSDSS

I'm sure we'll get to know many more as Malcolm goes through life stages. We had a great day today, filled with parks and bike riding and leftover turkey.

Mary Ellen

Happy Thanksgiving

We had a great day today on our freakishly warm Thanksgiving weekend. Malcolm is a going concern as usual and he had a great time playing with some toy dinosaurs in his highchair after supper. He knows the sign for dinosaurs because, since he has a dinosaur-obsessed brother, we actually use the word a lot in our house. He was saying "roarrrr" and making their heads butt - and then laughing so hard he had to stop. Then he took his facecloth and starting to wash each dinosaur's face. It was too cute.

We have many things to be thankful for and good health and happiness are certainly at the top of the list.

Mary Ellen

Learning

Wow I must say it is harder than I thought to write something on this blog every day for a whole month. There are some topics that I would like to explore but they require some time to think about and write and time seems to be in short supply these days.

So for tonight I will simply assure you that both boys continue to do really well. Donovan entertained us tonight by counting by tens all the way to 700. Then he got bored and told us that he would finish later. Donovan has also been counting by twos and threes so we are thinking they must be doing a lot of this type of pattern stuff in school - glad he likes it so well! I am intending to work more with Malcolm to learn his shapes. He can match pictures of different shapes quite well and I'm thinking he is starting to recognize shapes more generally. He is able to identify many different animals in different contexts so am sure if I can make shapes fun (ideas?!) it won't take him long...

Mary Ellen

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