My thoughts on the TVB Pearl documentary

Last night, our family sat around the TV, popcorn in hand, eagerly awaiting for 8pm to come around so that we could see Maddy on The Pearl Report. It was an honour to be involved in this documentary and I think it was pretty cool how it aired on the eve of Dwarfism Awareness Month (October). 

The show is available online on the Pearl Report webpage here (for a month or so only), or on youtube, linked below in two parts. 

As the show started, I began to cringe at a lot of the terminology being used. "Wheelchair-bound", Lana being "normal", my "fetus"? "The painful choices they make to live normally". Even in my education degree, as we studied inclusive education, we were taught about terminology which victimises those with disabilities or differences and terminology which is neutral. It's not just about being "politically correct", it's about what these terms imply... I would have thought that the media would have had more awareness about such issues - but maybe it's just Hong Kong. Here, doctors still use the word "retarded" instead of "has an intellectual disability".

Most people who use a wheelchair are not "bound" by it - instead their chair gives them freedom of movement they would not have without it. They use a wheelchair to gain mobility and independence - it is a wonderful thing, not a "prison". 

In addition, using terms like "normal" imply that kids like Maddy and Nathan are "abnormal" when nothing could be further from the truth - they are in every way as normal, boring and even average as any other kid their age, they just have one little difference which makes them stand out. Many times, it is the first thing someone would notice about them - but in terms of their entire lives, experiences and personalities, they are far more average than these terms imply. "More alike than different" is a slogan I have heard and love - and using terms that emphasise these differences implies that this is not the case. 

Finally, "fetus"? For a third trimester pregnancy which is both wanted and loved? I heard someone making the point recently about William and Kate's baby - it was never "fetus", even yet unborn, that child was "the future king".  Why not just say "Their third daughter, due in December..." or "Their future child...", something like that?

I did feel that the terminology used did portray (in my opinion) a negative perspective. I was afraid of this in advance and even comment to the producer that I hoped this would not be the case. I didn't want anyone to see this and pity us. 

Looking beyond the terminology, however, I thought that Maddy was gorgeous and exuded with joy and life - which is exactly who she is. I also loved that in the segments that we were involved in, I could feel the common thread of "hope" - from the final part of the first half, talking about hope for the future, to the little "Hope" decoration that was in the background of the video footage inside my home. 

Similarly, I loved the segments about Serene, Dennis and little Nathan (and Maddy was so excited to see her friend on TV as well!). There were worries and challenges discussed, but I loved how his segment ended, with Dennis discussing how Nathan will be able to "stand up to the challenges ahead" with or without drug therapy and interventions. 

A few other minor comments: firstly, I didn't have to travel to the US to see Dr Mackenzie - I was going there for a wedding and figured "why not" since I was already nearby. Secondly, why didn't anyone tell me that my tag was sticking out at physio?? Thirdly, I'm not 34 weeks pregnant - as of the air date, I was 30 weeks. Although I WISH I was 34 weeks! And finally, I asked them not to put any "tummy shots" of the ultrasound on TV - but now my lovely pregnant tummy has been broadcasted all over Hong Kong!!

Watching the show, and knowing all that I know about our experience, Nathan's experience, dwarfism in general, I have to say I didn't think that the 30 minute show even really scraped the top of the iceberg - I wanted to know so much more. I knew there was so much even of our story that was cut - and other parts which were not filmed due to deadlines. I was left wanting to know more.

I have to add though, generally I don't name our doctors and hospitals publicly but since the show has already done it, I have to say that Dr Michael To is one of the best doctors in or out of Hong Kong that we've seen. He's remarkably sensitive and doesn't forget that he is treating real human beings - kids with families, schools and lives to live. In addition, there have been multiple times that I have emailed him with various questions and he has always responded so quickly. It is so rare to find those characteristics anywhere in Hong Kong, even in private clinics let alone the public hospitals. I have a few friends who also see him and have never heard a bad word about him - everyone who has seen him speaks so highly of him. We are so lucky to have him as Maddy's orthopedic doctor!

Thanks TVB Pearl and the doctors and other families involved in the making of this documentary. It was a great and eye-opening experience and I'm so glad we had the chance to be involved in it :)

Registered

Another pregnancy post! I'm growing, baby is kicking me constantly, the end is in sight! On Saturday, I'll be 30 weeks, I think. I keep losing count!

I saw my wonderful, amazing private doctor a week or so ago for my 28 week appointment. All is going well, baby is growing on her own growth curve. The cystic hygroma is still there but the doctor is unconcerned as her heart and blood flow is good. There's still time for it to resolve naturally and we are still hoping that it does. I think if not, they can drain it if necessary at birth, but of course we'd prefer it to resolve without needing any medical intervention!

Now that I'm in my third trimester, I knew I could not put off registering at the hospital I need to deliver at any longer. I have a love-hate relationship with this hospital. I've delivered all my kids there - but it is a public hospital and there is little sympathy or hand-holding. You have to insist on the things that are important to you otherwise you will be just one more "case" in their "production line". Medically, they are the best hospital in Hong Kong. Socially, I think they might be one of the worst - however there are a lot of bad hospitals (socially) here. A lot of outdated policies, rude nurses, people who should never have gotten jobs in hospitals. Being from Australia, it bothers me a lot - but the locals seem to accept it and don't let it bother them.

I went to make the appointment to register and got reprimanded by the admin staff for registering too late. She kept going on and on about how I can't register this late. I told her flat out "I don't want to be here either, but my doctors tell me I have to be here for medical reasons. We both don't like it, deal with it." (great attitude I know). 

The next day, I had my "registration appointment". I had forgotten that it took SO LONG... you have to watch the same videos on the hospital system and breastfeeding that I have sat through two times already before you are even allowed to register. After an hour of this, I wanted to ask the nurse if I could skip the videos as I had seen them twice in the past 5 years already. I got myself a talking to again for asking that. "You're wasting my time, it would be faster for everyone if you didn't bother me with these questions and just sat and waited for me to call your number." I went out and had a mini cry because these attitudes are exactly why I didn't want to be there in the first place. When I did have my appointment with her (45 minutes later), she was much more civil and I was too tired of it all to make more of a fuss. 

This week, I had my first appointment with the obgyn. I was already a bit worked up from my previous two experiences and wasn't expecting anything great, but jotted down some of my questions/requests to see if they can accommodate them. 

Basically what I wanted was:

a) as few follow up obgyn appointments as possible - I prefer to see my private doctor.

b) I needed to get in to see prenatal diagnostics so that they can "formally" diagnose this baby

c) I wanted to still be considered "low risk" for the pregnancy, as we know the diagnosis and there is no increased risk of premature labour or other pregnancy related complications - the only difference in medical care is specifically for the baby after she is born, not for me.

d) I wanted to discuss my options for pain relief during labour given my recent spinal surgery

e) I need to arrange to meet with the neonatologist (whom I have already emailed) to discuss this baby's care once she is born.

I was SO BLESSED to have one of the nicest obgyn's that I've ever had in my (now) three pregnancies at this hospital. She listened to all my requests and did everything she could to accommodate. I do not have to have ANY follow up obgyn appointments with the hospital at all until I am 36 weeks pregnant (way better than I was expecting!), but I do need to see prenatal diagnostics in the mean time. Prenatal diagnostics will arrange for the appointment with the neonatologist and geneticist.  In addition, I need to see the anesthetist before the baby is born to discuss which pain relief options are viable for me in labour. In my previous two deliveries, I had epidurals - mostly because this (backward) hospital prefers women to be still and silent during labour ;) I would actually like to try a delivery without an epidural but that would mean that I MUST be off the bed and moving around - which might not fit in with their ideologies so much. Anyway we'll see what comes of that. 

The only negative thing is that my private doctor does the glucose tolerance test between 24-28 weeks, and I had it done right at 24 weeks I think. This hospital does it between 28-30 weeks, so they are insisting that I repeat the test :( So that'll be my Saturday morning! (it's only offered on Saturdays, so annoying...) I also had to repeat my blood tests because there was apparently one thing that my current tests left out. 

All in all, registering at the hospital was better and worse than I expected. It needed to be done. Now it's done. We do what we have to do, right? I'd much rather not have to deal with them again at all but am trying to stay positive about it since I know this is best for baby...

Two new schools for Maddy

The month of September has been an extremely busy one for us all. Lana started primary school in the last couple of weeks of August, we moved house on the first weekend of September, and right after that, Maddy started not one but TWO new schools. 

Last year, Maddy attended a regular, mainstream kindergarten. For many kids in Hong Kong, they start kindergarten (or what we would call in Australia or the US, "preschool") when they are 2 years old. The first year is "nursery" then for the international education system, there are two years of "kindergarten" before they start primary school in August/September of the calendar year that they turn 5 (so 2015 for Maddy). 

Mainstream kindy has been a great thing for Maddy - it has allowed her to socialise with her typically developing peers and has challenged her to learn to do things that they can do. I would have loved to have kept Maddy in her old school for this year, however her classroom would be upstairs requiring her to make multiple trips up and down with 10-15 other 3 year olds, something I didn't feel was ideal. Her school, however, had another campus which was just as close to our house (but in the opposite direction). After checking it out, we decided that this campus was far better suited to Maddy's physical needs. 

So it has been a couple of weeks now and Maddy has been settling in quite well. She still sometimes has some tears at drop-off time, but they dry up quickly and she bounces out of class happy and talking about all the fun things that they did at school. She is now going to this school Monday to Friday, for 3 hours every day.

In addition to mainstream school, Maddy finally got in to a government-subsidised "special needs school" (or as they call it, "early education training centre", specifically for preschool aged children with disabilities and developmental delays). It has been a long two and a half year wait for this place to open up for us, but I have such a good feeling about this school. She now will be having all of her therapy in one location, the therapists will communicate with each other and with her classroom teacher there, we will have IEP meetings to discuss our goals for her so we as parents will be more involved in these plans and will be working more closely with her therapists. All in all, I believe it will be beneficial for us all to have this holistic approach.

At this special needs school - she is going 2 days a week - the group class is for 3 hours but with therapy on top of that (which sometimes is during the group class, and also sometimes either before or after class), she actually is there for 7 hours a week. She will have weekly individual occupational therapy, individual speech therapy as well as biweekly physiotherapy. Within the group class, they have weekly group speech therapy as well as weekly music therapy. The class is small - only six kids, and they all have various special needs. Maddy seems quite attached to a little boy who has autism. I don't know much about the other kids' needs. 

It's interesting (to me at least) to go back and read some of my previous thoughts on schooling here and here. The two schools which we have finally decided on do provide a very busy schedule for a three year old - however I feel as though this will be a good combination that we can work with over the next two years. In two years time, she will be starting primary school and hopefully the next two years will be great preparation for her so she can be as independent as possible by then :)

Now for a few photos:

First day of school

 Already working at spelling her name ;)

Checking out the Hong Kong traffic

Having a sick day in her 2nd week of school :(

Airing Date

I got this email from the producer of the documentary that we are involved in: 

Hello everyone,

Our story about rare genetic diseases will be aired on Monday, Sept. 30, 2013 at 8pm on The Pearl Report, Pearl channel. It will be replayed on Tuesday at 1am and Saturday around noon. It will also be uploaded onto TVB.com for a few weeks.

Thank you all for your cooperation.

Renato

For those of you who are in Hong Kong, please tune in! This show will also feature Nathan, who is Maddy's friend (actually I met his family shortly after he was born - they were googling for information about dwarfism in Hong Kong and came across this blog - you can read their original comment here: http://madeline-hope.blogspot.hk/2011/06/new-friends-part-1.html). 

For those of you who are not in Hong Kong, the show should be available through this link: http://programme.tvb.com/news/pearlreport/ - although it will only be available online for a few weeks so you need to get in early.

I will post again before the show airs, and will probably post my thoughts about the show afterwards. I have already emailed this to the producer:

Also a side note - having dwarfism can be for many a positive thing. In fact I know of couples where both the husband and wife have dwarfism and they would LOVE to have a child with dwarfism, would even prefer that to having a child without dwarfism. I know that many of these questions are focusing on the challenges etc, but please do not convey that dwarfism is all negative. Awareness of challenges can be a good thing, pity is not. Does Maddy sometimes need a bit of an extra helping hand? Yes. But she never needs pity. Pity is disabling - and while Maddy has challenges, such an attitude can limit her potential. Given a positive outlook and high expectations, people with dwarfism can be anything and do anything that anyone else can do - and probably with greater appreciation because they had to work harder for it. I hope that your show conveys that as well. 

 He has assured me that although the show does focus on the challenges faced by those with dwarfism, it will "end on a positive note".

We will see :)

Baby girl 3 - 24 weeks

Early last week, I had my 24 week ultrasound for this baby girl. Bernard wasn't able to come with me to this appointment, instead I brought along the camera man and producer from TVB Pearl! The appointment went really well - baby is growing well (she still obviously has DD, but considering that, she's growing well). Limbs are now around 5 weeks behind - Maddy's at the same stage were 6 weeks behind so maybe this one will be a bit taller? I'm sure it's too early to predict that. Good news is that the cystic hygroma seems to be shrinking a bit. The doctor is unconcerned and honestly, I am too.

It's amazing how relaxed I feel about her having dwarfism. Having a glimpse into the future takes away most of the worries. The one thing that I do get myself worked up about is the whole NICU thing - we had such a bad experience with Maddy and I hope we won't have a repeat of that... 

I still haven't registered at the hospital that I need to deliver at - I know that doing so will add stress to me as well (the hospital is a stressful place for one, also the appointments take forever and the location is inconvenient as well, along with the archaic attitudes of many of the staff there). My private doctor is so supportive, I feel as though I'm still in great hands - and whatever makes this pregnancy less stressful is a good thing. The hospital cannot turn me away so there's no "need" to register at all - although it's better if they have your medical records before you deliver, particularly in situations like this (besides, if you haven't registered, you can only be admitted through the emergency department!). 

The best thing about this past appointment is that we got to see a 3D picture of our little girl's face and hand - you can see she has very similar hands to Maddy, with the hitch-hiker's thumb as well. 

Enjoy!

Filming

A month and a half ago, I was contacted via this post by a producer from the Hong Kong TV station, TVB Pearl. He was filming an episode for The Pearl Report, a current affairs/documentary kind of show, about skeletal dysplasias in Hong Kong and asked whether we'd be interested in being a part of it. At the time we were still in the US but I figured when we got back, why not? Personally I feel as though the biggest reason for discrimination is ignorance - and if I could share anything that might help dispel a bit of ignorance, it can't be a bad thing. 

Over the past few weeks, we spent a bit of time filming different things - we filmed a bit at the beach one day, then another day the crew came to our house, they joined us for speech therapy one day, and they joined us at a prenatal appointment another day. We were meant to also go to see Maddy's orthopedic doctor and go to occupational therapy, but unfortunately both of those appointments were cancelled due to a typhoon! 

Overall, it was interesting filming with them. I hope that this show does bring a bit of awareness to living with dwarfism and other skeletal dysplasias within Hong Kong. My main concern is that it may present an overly negative, sensationalised perspective. Many of the questions that the producer asked me were negatively phrased... things like "What are the biggest challenges..." and "what are your worries for the future" and "what has been the hardest times in Maddy's life". I wanted to make it clear that while dwarfism does raise unique challenges, Maddy is no more of a "burden" than any other child. Maddy is a joy, and a blessing - just as she is. There are difficulties with any child - and many of the things that have been hardest with Maddy have nothing to do with her dwarfism. In fact, our biggest issues lately have been sibling rivalry. So very "normal"! Also, many parents of "healthy" children have far more difficulties than the small, physical things that we deal with.

I'm looking forward to seeing the final product - it will air around mid-September or so. When I know the exact date, I will post it here in advance - in addition, the episodes are available to view online for a period of time (I'm not sure if there are regional restrictions though). I hope there will be many viewers and that this show can raise positive awareness about dwarfism :)

My first "Guest Post"

For a long time, I have been reading the blog "This Little Miggy Stayed Home". Miggy has two daughters who are very close in age to my two girls, and is also expecting a third daughter in December, just like we are as well! Her 2nd daughter, who she calls "Lamp", was born with limb differences. She is super adorable and smart :)

One of my favourite features of this blog is the weekly "Special Needs Spotlight", where Miggy features different families affected by special needs. I look forward to reading about a new family each week, and learning more about special needs in general. 

It wasn't until recently that I thought "Hey, maybe I could write about Maddy!" and so Miggy kindly agreed to do a spotlight on our little family. 

I'm so excited to share it with you - check it out here :)