Grace for Rett » Grace's Life with Rett Syndrome

New fun and games // precocious puberty

60116933Well this explains a lot.

About a year ago we first started noticing signs of puberty in Grace. Ya know…hair down there. Underarm issues. Little booblets (not a technical term). But honestly, the most perplexing thing has been the emotions. Ooooh the emotions. Lots of crying at night for no known reason. Still don’t really know, but I do suspect perhaps that’s part of this?

To find the cold hard facts, Grace needed a blood test, a wrist x-ray (to measure her bone age) and an ultrasound of her ovaries. All of these show that her ‘age’ is 10 although she’s 7 which means she’s the age I was when I started my period (yayy for TMI, right?)

Next step? Put those hormones on lockdown. Waiting for a referral to the right doc for that part. Fun, fun.

Grace got her feelings hurt (and I was jumping for joy)

Screen Shot 2016-08-14 at 21.13.45

Grace has the most spectacular carer/nanny, Anna. She takes Grace to her church on Sundays and recently, came back with this little story of triumph for us. It’s bittersweet and you’ll see why…

Grace saw a little friend at church who was in her class at school last year. He (innocently) said to her something along the lines of, “Grace, I hope you can be normal someday like other kids…” She looked him straight in the eye and her lip began to quiver, and tears began to flow.

If you know Grace, you’ll know that this just does. not. happen. She’s the happiest kid. EVER. She smiles while getting jabbed by nurses looking for veins. Pretty much nothing upsets her – she’s calm and collected. It was clear that:

  1. She understood what he said 100%
  2. It hurt her feelings
  3. She expressed and communicated it

It can be hard to keep the faith sometimes. I require that in order to be on Team Grace, you MUST “presume competence”. You are not allowed to believe that she’s mentally retarded, cognitively delayed or any combination of the two. So when things like this happen, I jump for joy at yet one more reminder, proof even, that

Grace is there.

Grace understands everything.

Grace is competent.

Susy Matthews - August 14, 2016 - 8:27 pm

Go Team Grace. We adore you. X

Duncan Millar - August 14, 2016 - 8:40 pm

Grace is awesome and I believe, but you know that 😉

Abigail Jones DH - August 14, 2016 - 9:00 pm

We require the same on Team Esmé. Love you Grace x

Geraldine Walker - August 14, 2016 - 9:04 pm

Rett girls are the most happiest! I truely believe they here and understand everything, just have the inability to communicate back…unless you know them! There are subtle signs that show you they are truely inspirational! You have a beautiful daughter!!! God bless her xx

Michelle Landon - August 15, 2016 - 1:54 am

I am a caregiver for a friend’s daughter that has Rett Syndrome. Ashley is a little angel, and I know when I look in those beautiful eyes that she understands everything. I have taken care of her since 2009, we know each other well and Ashley knows how to make herself known. I love her like she was my own. I pray for a cure for these beautiful girls.

Rachael West - August 15, 2016 - 7:45 am

She is such a gorgeous girl.

And now for something new (bed sores)

(Just when you think you’ve seen it all)

There’s always something new around the corner when you have a non-ambulant kid.

But first a little story to get us going:

Once upon a time (the day before we went to Florida for Christmas), we noticed Grace’s left leg wouldn’t straighten without her shaking and getting noticeably upset. For a few days she was quiet, withdrawn, very still. I started to remember these being signs of pain with other kids I know who are non-verbal. Having had the pleasure of enjoying American healthcare services sans health insurance, we decided to get her checked at the hospital here before we headed out.

Lo and behold, she has a little broken hip. A tendon had snapped away taking the bone it was attached to along with it. The only treatment was pain management so we took her home (after social services decided we weren’t deadbeats) and packed for 3 weeks in Florida.

So now for something entirely new…


Our very first morning we pulled back the covers to find a most disgusting somethingorother had developed on Grace’s heel. There’s no way for her to get a blister because fact is she doesn’t move. In fact, her shoes pass for brand spanking new when she’s done with them.

So after researching, asking questions online, forums, groups on Facebook…I decided what we were looking at is actually a bed sore also known as a pressure sore.

// why //

Pressure sores aren’t caused from rubbing. They’re way more sinister than that. When pressure is placed on an area for many continuous hours and the person can’t move to shift that weight, blood flow to the area can get restricted causing the tissue to die. So that gigantic pussy thing is just the tip of the iceberg. These things go deep. And they’re actually quite dangerous and prone to infection.

// how //

How to treat it was a tricky thing to figure out when we were 3k miles away from her medical team. So we kept it clean and dry and propped her feet up on pillows.

The other heel started looking red and we thought we’d caught it early but once we got home that one turned into a big thing like the first. And now that we’re home that one is being treated properly with dressings and the community nurses come to the house to change the dressings, measure the wound to see if its growing, etc etc. And she’s on some heavy duty antibiotics because it became very angry and hot.

The OT is coming this week to assess the way she sleeps so that we can alter her sleep system to keep her heels off the bed from now on.

I guess it just feels like once you’ve seen it all, know how to deal with everything that comes your way, something else pops up and it’s left me feeling that thing again…that deep knowing that every day we could wake up facing something scary.

So thankful for the NHS and Grace’s team who never fail to jump into action when she needs them.

Mary Duke - January 10, 2016 - 10:52 pm

Just another problem for girls with Retts. The list seems to just go on.

Rachael West - January 11, 2016 - 1:57 am

Thanks for sharing, something else to keep an eye on.

The Age of Reason

Tomorrow, Grace turns seven.

Seven seems like a really cool number to me. Seven days in the creation story. Seven deadly sins. Seventh Heaven. Seven seas. Seven continents. Seven colours in the rainbow. Seven days in the week. Seven dwarfs. Some people are actually named “Seven” (and I, for one, am hella jealous of people with quirky names).

Seven years ago I popped Grace out of my tummy. (Jack came out within seven hours, but Grace came out in two, making her my most convenient childbirth). And I guess while we’re on the subject, worth mentioning that Elijah took twelve lovely hours ripping me apart from the inside.

…but I digress…

Seven is a magical age. It’s known as the “age of reason”. In developmental psychology, this is explained as the age at which children are suddenly capable of carrying on complex conversations. They become more adept at identifying and expressing their emotions and so on and so forth.

Elijah entered this state as soon as he could talk. His first phrase at the age of two: “you’re not in my family!” (when Nanny wouldn’t give him candy) Also at age two the declaration “I’m FRUSTURAAAAAATED!” (connected with his emotions and able to express them). Age three, whispering to himself, “this is my life” when I forced him to hold my hand. Age four asking, “Mom, can we talk about car insurance?”

I didn’t know the meaning of this magical age until Jack turned seven and almost overnight, he became connected to the world around him. He started contemplating life, death, love. Asking questions. And answering questions with real, actual thoughts of his own. The unfurling of a new mind before my very eyes.

Tomorrow, Grace enters this age and my heart is apprehensive to be happy.

When I was a figure in the Rett charity world, I had to tow the party line that our girls are not cognitively impaired (aka “mentally retarded”). I don’t regret it. I believed it. But now I don’t know what I think. Well…I mean…I don’t know what to feel. I have ferociously fought in the corner of competence. That these girls and women are every bit as mentally advanced, adept and…well…brilliant as anyone else their ages. “If not moreso” I preached. And I have all the evidence I need to believe this. I have seen videos of girls and women using eye gaze computers. Hell, I’m friends on Facebook with Jo, a teenager with Rett who is every bit the teenager you’d expect. She’s got a great sense of humour. She’s the kind of bold I was at her age and I’d like to think we’d be friends in real life. So I have a big fat chasm…a dissonance between what I know, what I believe and what I will allow my heart to embrace.


At the end of the day, if Grace is 100% as mentally competent and advanced as every other child the day before they turn seven, then I don’t know if I can be happy about this birthday. Because what could be worse than coming alive to the complexities of this life and not being able to talk about them? Test them out. Ask questions. Answer questions.

I might be shit at a lot of things (like making school lunches or remembering birthdays or keeping up with friends) but one thing I’m not bad at is raising smart people. My boys are independent, brilliant, driven, entrepreneurial, bold, confident kids who are allowed to mess up, believe what they choose to believe, play with different ideals, test waters and make important choices. So I know that if Grace could talk…if she could express the complexities of her mind, she would be even more the shining star in this world than she already is.

Darren LeRoy Halford - November 24, 2015 - 5:05 pm

Thought provoking stuff.

Stephen Potter - November 24, 2015 - 8:42 pm

Good stuff!

Peter Bangs - November 25, 2015 - 4:40 pm

That’s potentially the saddest happy thing I’ve read in a very long time. I’ve only met Grace two or three short times but I know she’s a lovely girl blessed with two parents who will do everything they can to make sure she had all the best opportunities. If she could talk she would bear testament to everything you’ve invested in her life just as your boys are a testament.

How to Photograph a Girl with Rett Syndrome

It seems that people must be Googling about how to photograph girls with Rett Syndrome, so here’s my answer to a recent email inquiry on the topic.

So many families with disabled children avoid the photographer because it can be a really disheartening experience. I once had a newspaper photographer come to photograph Grace and he was frustrated because she wouldn’t lift her head on command or look into the camera. Even though he knew he was photographing her because she had Rett. I thought “is this what it’s like to take your disabled kids to a photographers? No wonder people don’t do it!”


When photographing disabled children, I go for two different types of photos. Ones where their disability is obvious and ones where the insides shine through and they don’t appear to be different from other kids. The ones where they actually look like they have Rett will be easy because that’s how they look the majority of the time. When Grace was first diagnosed, I used to delete the photos of the crossed eyes, teeth grinding, hands flying allover the place. But now, I think they’re cute because we’re used to the way she is. And I don’t know where the parents are in their journey so I take both types. The more normal looking ones aren’t as easy. You have to focus between the eyes and if she’s moving around a lot (rocking, tremors, etc) you’ll have to follow her face with your camera. Wait for those precise moments when she looks at you and snap those shots. It can take me up to 40 or 50 shots before I get “the one”. Be patient. It’s like hunting.


That said, some parents hate the photos of the girls with their eyes crossed so taking the time to talk to them and ask what her strengths are and the particular faces they don’t like (exe: “when you take pictures, what are the ones you always delete?”) would be good. Now, remember that as a photographer, it’s your job to create products for them to display in their home. The highest value shots will be those where she is looking straight into the camera.


It’s instinctive to call a kid’s name to get them to look at you, but girls with Rett (other than two girls I can think of) don’t do anything on command. Calling their name over and over will just frustrate you and make their parents feel like they should be doing something to make it happen. If parents are saying “smile, smile, smile” I just say “don’t worry. I’m just waiting. It’s ok” because the girls can’t do things on command. But sometimes parents try so hard to make their girls seem normal so they still try to demand that they smile. It’s very important to know that these girls aren’t mentally challenged. They’re “in there” and just locked into their bodies. Resist the urge to baby talk her. And I think the most frustrating part of asking a girl with Rett to smile or “look over here” is that she knows what you’re saying, but her body has a mind of its own and that will just make her sad.


Girls with Rett have very fast moving heads and hands so you’ll need a very fast shutter. Sometimes, their hands are still a blur and to be honest, that’s Grace (super fast hands that are always moving) and I find it endearing so I don’t always try to freeze her movements.

Below is a video of me working and photographing Rett kiddos (if you’re reading this in your inbox you won’t see the video so click here). You can briefly see a tactic which works really well and that’s to hold a phone or tablet above my camera with their favourite music or TV playing (you can also see me doing this in the photo below that). Just be patient. Don’t shout commands or over stimulate her. Sometimes I ask everyone to leave the room so it’s not sensory overload. Sometimes the parents are the problem and I have to pluck up all my courage to ask them to leave. And if you just sit there and chill, she will look eventually. 10% of the time, I get a gal who simply doesn’t ever look at me. For some of these girls and women, their bodies are such runaway trains that just trying to breathe is enough to keep their attention elsewhere. Don’t stress. If that’s who they are, then that’s fine, too. Just photograph her for who she is.

Some technical notes: unless you’re very experienced with wide open apertures, I wouldn’t shoot below f/4.0(ish) if you do what I said and focus between the eyes and follow until she looks, shooting wide open can be risky depending on the angle of her face when she does finally look. Avoid flash – this could induce seizures in some gals and is just generally not a nice sensory experience for them. A nice natural light is all you need. Position yourself with a window or sliding glass door directly behind you (you can see in the below photo how close I am to the window).


That’s all I can think of for now – good luck!


Amanda Nicholson - October 13, 2015 - 3:12 am

Very good read. :)

Sylvia Jeanne Rodoni Koutz - October 13, 2015 - 4:11 am

Very nicely done and informative. Beautiful girls.

Mike Twohigg - October 13, 2015 - 8:55 am

Your pictures of Cassie are the best ever

Virginia Fitzpatrick - October 13, 2015 - 11:19 pm

Julia LOVES music and I slip my phone down in her chair playing one of her favorite songs and WaLa
We’ve got a smile!!!!on command:)

Linda Marie - October 13, 2015 - 11:25 pm

She’s a special kind of photo Grapher yes she is

Kathy Gaskamp Loflin - October 14, 2015 - 1:49 am

Your photos are amazing! Thanks for sharing!

Grace Collections Photography - October 14, 2015 - 2:44 am

Its always an honor photographing anyone with a disability. I have had that honour many times over and earlier this year photographed a young girl with Rhetts. The key factors mentioned in the article are all true indicators of a professional able to accommodate the needs of their client rather than expecting their client to meet their requirements. It is a joy to capture families in all shapes/sizes creating long term memories.

Alicia Vergara - October 14, 2015 - 2:55 am

Pues así le hacemos es casa.. mil fotos y una sale realmente bella..

Mary Wilkinson - October 14, 2015 - 4:13 pm

Nicely done! My Rett daughter is nearly 35, I’m not a photographer but have always tried focusing between the eyes and following her, sometimes I get dizzy! lol She loves light so we found many years ago if we need her to turn her head and focus we’ll place a flashlight behind us in the direction in which we want her to look. Not a bright bright light just a soft light to cause her to focus.

Tina Chain - October 14, 2015 - 7:50 pm

Thank you for sharing!

Scott L. Vannatter - November 15, 2015 - 6:57 pm

Wonderful post. I have missed reading about Grace and her beautiful family.

Estefania Peña de Solari - February 26, 2016 - 5:30 pm

You sound like an AMAZING human Being!

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