27/07/13 - well done, disney.

The below article has been taken (without permission!!) from www.thecronicle.com.au.

I was pointed to it by a Cleftpals member, and it made me feel so hurt and angry for all of the kids like Ellie in the world that I wanted to do something.....

CLEFT palate support charities have hit out at Disney's new summer blockbuster The Lone Ranger, amid accusations that the villain was given a birth defect to make him look more 'evil'.

Disney's promotional material for the film said of William Fichtner's character Butch Cavendish: "Cavendish is a ruthless outlaw whose terribly scarred face is a perfect reflection of the bottomless pit that passes for his soul."

Fichtner told entertainment reporters that his "broken nose and cleft lip" made it easier to slip into his role, and meant he didn't need to act any more evil because it was obvious from his face.

The Cleft Lip and Palate Association (CLAPA) issued a statement saying Disney was "cashing in on prejudice", and urged its members to lodge complaints with the film's producers.

The character's scarred upper lip was added during hours of make-up, and the focus on Butch Cavendish's appearance has not escaped the notice of film reviewers.

The American movie website Lost in Reviews featured a post which said: "William Fichtner oozes creeptastic vibes from his villainous character, with his long greasy hair and extreme cleft lip."

Even the official set of The Lone Ranger Lego toys features a small Butch Cavendish with a very prominent cleft lip.

In an open letter to executives at Lego, a member of the US community website "babycenter" wrote: "You make toys for children and these toys (often wonderfully) impact how they perceive or create the world.

"Holding this responsibility, how can you have created and market a toy with an obvious cleft lip - aware of the damage and hurt you are causing to children that may already be struggling to overcome this specific challenge?"

CLAPA said Disney was sending out "a deeply harmful message that will impact the 90,000 people that were born with a cleft in the UK as well as others worldwide".

Their statement read: "What message does this send to movie-goers about people with a cleft or anyone with a visible difference? What message does it send to those who have a cleft themselves about how they are seen by society?

A congenital abnormality is not something to be made fun of, a cleft lip does not add to the 'look' of a villain, a character like this will not help the public's perception or understanding of cleft, and Disney, we will NOT be going to see your movie."

Across the Atlantic, the Toronto Star reported Rachel Mancuso, who runs the website cleftsmile.org, as saying she had received around 1,000 emails a day from people complaining about the film.

She told the Star: "As a parent and educator, I'm having a hard time understanding why they had to create a bad guy and slap on the number one birth defect."

The executive director of another charity, Transforming Faces, said: "It's disheartening that a major motion picture would perpetuate this negative perception and we hope that in future, birth defects and facial differences will not be used to portray 'evil' characters."

And the matter has been particularly contentious in the US; in the same week that The Lone Ranger was released over there, the Centre for Disease Control and Prevention announced that July was "National Cleft and Craniofacial Awareness and Prevention Month".

As CLAPA said: "Disney have clearly proven that awareness is still a serious problem."

Disney was unavailable for comment.

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So, I did what I do best: I wrote a letter. And then I shared it on Facebook for the world to see, and asked my friends to share and email as well. I think the letter (below) says it best. We certainly won't be seeing the movie, and I'll think twice before purchasing disney products in the future.

  To whom it may concern,

I can not begin to express my extreme hurt and anger upon reading some of the promotional material for the latest Disney film, the Lone Ranger. 

Both my husband and my daughter were born with a cleft lip and palate, just two of more than a billion people world wide born with this condition. As a wife and a parent dealing with the discrimination and hurtful comments my family members are subjected to, I have to say I find it utterly appalling that Disney, a company that prides themselves on family productions, would so openly vilify this condition.

My daughter is not the perfect picture of evil that you seem to think a cleft scar represents. Her scar is not ugly, it is a testament to how strong and resilient she is. She will learn that her scar is something to be proud of, no matter how much others try to tell her differently. I will raise a child that is far more accepting, far more caring and far more beautiful than any of your executives sitting in their offices making stupid and hurtful decisions.

What you have done with this movie, and the comments made to promote it, is to tell children like my daughter that all they can hope to be is evil. That people will judge them just as you are. That they are not good enough. Children should be given positive role models, something or someone to aspire to, not vilified for something so completely out of their control.

The lack of compassion shown here by Disney, your promoters and your actors is disgusting. The damage is done, but at the very least Disney needs to issue an apology to the 1 in 6 people worldwide who you have isolated and offended.

Shame on you Disney. 

Regards,

Tracey Clark 

18/07/13 - Audiology Review

BThe last of Ellie's six-month checks was for her hearing. It was probably the least exciting, but also the one I was least looking forward too at the same time.

We knew that because her hearing loss is caused by her cleft palate that it certainly wasn't going to improve until after her repair. But we could also tell by the way that she interacts and listens to noises around her that it had worsened much either. So I didn't really see much point in the review. 

The day before I got a phone call from the receptionist who runs Gill's audiology clinic. She reminded me that Ellie would need to be asleep for the test, and suggested delaying her feed to help with that. I thought she was crazy. Maybe feeding a newborn will put them off to sleep easy enough (although this never really worked with Ellie!) but a six month old wont sleep unless they want to. And the appointment was scheduled right in the middle of Ellie's longest awake period. Needless to say, I was anxious.

I did the best that I could, delaying her feed until we arrived at the clinic, but what I was left with was a very cranky baby. She didn't want to sleep - she was too over-tired. I apologised to Gill when we went in... And she said that it was fine, Ellie actually needed to be awake and alert for the test! I was so annoyed with the receptionist. There I was, with an upset, over-tired baby, and if I'd stuck to her usual routine we would have been fine all along!

Gill did her best, and we managed to test her left ear before she became too worked up. She didn't pass the test, but we never expected her to either. Gill decided to leave it at that, rather than upsetting Ellie even more. 

I was surprised to hear that her hearing would be fixed almost as soon as the grommets are inserted. I was expecting there to be a delay while the fluid drained, but Gill assured us that the grommets will be the magic solution. 

There is no point reviewing her hearing again until after the surgery. Her next test will be a couple of weeks post-op, and will be done in a special sound chamber, rather than with the little probes. Hopefully Ellie will enjoy that one a bit more!

9/07/13 - paediatrics disaster

I've met some stupid doctors in my time, but today's idiot takes the cake. Or maybe I should say, the low-fat cracker?

Today was Ellie's six month paediatric review. We got a call yesterday to say that Doctor Funk wouldn't be available, but we would been seen by a locum. I should have known that it was a bad sign, but I naively agreed to keep the appointment.

Because he was unfamiliar with Ellie's history we had to go through everything again. Do these doctors that are too lazy to read a file not realise that they force the parents to relive the trauma every time? I choke up when I have to talk about what happened to Ellie. He had the gall to describe it all as "very exciting, I've never seen a case that low before." Great. So glad my daughter's fight to survive excites you so much buddy.

He then started his attack. "We'll, it's obvious by the size of her that she certainly doesn't have reflux. We'll take her off the Zantac.... She's obese, you need to reduce her feeds.... She has oddly shaped ear drums.... Why isn't she babbling yet...." He just kept going and going, 

Any mother is going to take offence to such an onslaught of criticism towards their child. I'm actually quite proud that I didn't smack the idiot in the face. Instead I calmly explained to him that he wasn't the doctor who prescribed the Zantac so he wouldn't be touching the dosage at all. In fact, I was planning to get her dosage increased because she had started vomiting more and more, but I let that slide and decided to carry on experimenting until we found the right one on our own.

The obese comments shook me. I didn't know what to say, so I just nodded, all the while thinking "are you bleating serious?" By the time he got to her oddly shaped ear drums I just wanted to leave. 

The problem was, the whole way home in the car, and the rest of the afternoon I felt like crying. I have fought so hard over the last six months to get Ellie to feed. We've spent hundreds of dollars on expensive, specialised feeding equipment. I've sat for hours, syringeing milk into her mouth when she couldn't take a bottle because her palate was damaged from the bottles. I've overcome the reflux and the projectile vomiting, and we've achieved the almost-impossible - a cubby cleft kid.

But now here's this doctor, telling me that I've been doing the wrong thing all along. My baby isn't a healthy little girl that's thriving better than anyone expected. No, she's obese, and needs to be put on a diet because I'm over feeding her. Talk about a slap in the face!

Ellie isn't over fed. She has the exact amount of feeds that a baby her age is supposed to have. So what he said just didn't make sense to me. How can you over feed a baby by following the instructions you've been given? And more pressingly, how exactly do you reduce a baby's feeds? I can tell you, when Ellie is hungry she lets you know it. And he drains her bottles, sometimes demanding more (which I don't give her because, funnily enough, I don't want to over-feed her). I've watched her go through the baby-disaster that is wanting a feed that never comes, for 10 horrendous hours pre-surgery. I want to avoid putting her through that as much as I can.

But the biggest thing for me is that she has weight behind her for surgery. Ellie has two big operations coming up on her mouth in the next six months. I saw how much trouble she had with feeding after the lip repair, and Doctor Kimble has said that the palate repairs will be harder on her, and the recovery will take longer. So in my mind, she needs as much extra weight as she can get. Not only does it help her get through the surgeries themselves, but it helps her in recovery if her body isn't fighting to store what little energy it can take in while she's barely eating or drinking.

It took a lot of reassurance from friends and perfect strangers for me to let those comments go. I need to trust in myself and my abilities as a parent more, and learn when to ignore idiotic doctors. But these people get paid big money so that we will believe in them. 

POSTSCRIPT:

It took me the better part of a month to write this post. I wrote up all of the other appointments and kept them as drafts until this one was finished. The problem was, every time I sat down to record the words of that stupid so-called doctor I got so angry I had to move on to other things. After a couple of weeks I realised that I shouldn't have to feel like that, and I lodged a for mail complaint about him. I want all the parents out there to know that they don't have to sit back and take it. If a doctor makes you feel bad about your parenting, speak up. Change doesn't happen by complaining to our friends and family, it happens by pointing out the errors to the people in charge: in this case, the Department of Health and Human Services Tasmania.

4/07/13 - Doctor Kimble

It's hard to believe, but it's been almost three months since Ellie's lip repair. The scars are healing, the stitches are finally gone, and the swelling is slowly going down. But of course now that that hurdle has been successfully jumped, it's time to start thinking about the next one.

Our appointment with doctor Kimble was one of the only ones I was looking forward to. I wanted his opinion on the swelling between Ellie's lip and gum, and to find out more about the next step - the palate repair.

As usual for a trip to Hobart our day started ridiculously early, but at least this time I hadn't been up all night with a newborn! Ellie is taking longer before feeds now so we made it further before we needed to stop and we actually made it to Hobart with a bit of time up our sleeves.

When we arrived at doctor Kimble's private rooms at the Hobart Private Hospital the waiting room was full, and the receptionist said there would be quite a wait. We've waited over three hours before to see him in the public clinic, so I was a little bit anxious hearing that. He clearly runs his private clinic a lot better than the public one though, and we were taken through only half an hour late.

One of the things that I love about doctor Kimble is they way he always says hello to Ellie before he greets us. Her little face lit up when he spoke to her, and I get the feeling she is going to really trust him as she grows up. It's nice to see him care just that little bit. He also addresses us by name, and remembers what we're there for.

In his office he took a look at Ellie's swelling and said that he wasn't worried. I know that we'd been told that by doctor naiker, but I finally relaxed after hearing her surgeon confirm that it would go down by itself eventually. 

After that it was a simple matter of filling out the admission forms for her palate repair and we were on our way. He reiterated that with Ellie's cleft being so severe the repair would be more difficult, and explained that it will most likely take two operations to get the cleft completely closed. So we will go in September for her first repair and the second will be within six months after that.

After we left we called in to Ronald McDonald House to say hello to the ladies and to feed Ellie, and then we hit the road again for the long drive back. I'm starting to think we should just move to Hobart and save ourselves all this travel!

3/07/13 - Speech Therapy

July is a busy month in the Clark household. Not only is it Sophie's third birthday later this month, but Ellie is due for her six-month reviews with all of her specialists. We have appointments all over the state, I'm tired just thinking about it!

To begin our mad month, we got a letter in the mail today to say that she needed a speech review. This was one I didn't know about and I was a bit concerned about how we would squeeze in a second trip to Hobart in the month. But thankfully our speech pathologist, Sarah, had already thought of this, and asked in the letter for me to give her a call and we could work out if she needed to see Ellie in person or not.

Sarah is one of my favourite specialists. She's been in our life since Ellie was three days old, and has told us most of what we know to expect so far. She's very real. She talks "human" rather than doctor, and doesn't try to over power you with her knowledge. And now I could add thoughtful to the list too.

She returned my call in the late afternoon, and we had a nice long chat. I explained that things are going quite well for us right now. Ellie is happily drinking from a regular teat with a little bit of help from the Pigeon squeezy bottles, her weight is not a problem and she's getting the hang of solids.

We talked for a while about how we can help her speech before and after her repair. Without her palate she currently can't make the usual cooing and gaaing sounds that other babies her age can make. Her speech will be delayed even after the repair because she hasn't had the practice with these early sounds, and so now we need to start doing simple exercises with her, to help her develop the basic mouth movements. So we're saying a lot of "b-b-b-bubble" and "m-m-m-mum", which Ellie thinks is hilarious.

The only real issue I needed to raise with Sarah was Ellie's tongue. She has always favourited on side of her mouth for feeding. Before surgery it was the left side, which caused her gum to shift sideways. The lip repair correct that, and all of a sudden she would only feed on the right side, to the point where she gags when the bottle is on the left. Because she's happy we haven't bothered to change anything or force the point, but she is starting to poke her tongue out sideways now. Sarah agreed with me that for now we should just do whatever makes Ellie happy, but it will be something to keep an eye on as she develops her speech.

After our chat Sarah decided she didn't need to see us in person, and our next review isn't until she turns one, so that's one less specialist to worry about now!