As of last week, some pretty monumental developments in the world of Rett. It’s no longer autism, for one! Click here to go read the post over on the Cure Rett blog that explains everything you need to know about these changes.
Note: there’s video in this post. If you’re reading it in your inbox, click here.
When Grace was first diagnosed, we believed she was cognitively impared (aka “retarded”). And, you know, I was ok with that. I thought “That’s cool. She’ll just get pampered and loved and taken care of forever and she’ll never know the difference.” To some, the idea of your disabled child being mentally impared as being a good thing won’t make sense. But I found it a relief to think that she wouldn’t be fully aware of the loss of her body. Then I met Carlie (if you haven’t seen her story, click the link and watch before you read on). When I watched that, I sobbed. Oh, man, I cried so hard. I began to wonder if Grace was truly ‘in there’, too. By all appearances she seemed clueless, but was she really? Or was she just locked in to the prison of a body that doesn’t work?
Although the medical community has classically believed that Rett means mental/cognitive impairment, we’re finding that this is simply not true and, frankly, archaic. I recently had the immense pleasure of Skyping with the brilliant Steve Kaminsky, chief science officer of IRSF. I asked him “is there any proof that girls with Rett aren’t level with their peers in terms of cognitive abilities? Can you point me to any studies that suggest this?” His response was, “Absolutely not. We’re just not smart enough to measure their intellect yet.” We went on to talk about the measurability (or, rather, immeasurability) of data and the need to recognise that we simply don’t have the tools to get into their heads yet.
And before you shout “eye gaze!” at me, let me say that yes, there is eye gaze technology. But the steps needed to train a person to use that to effectively communicate are great. You don’t just plug-and-go.
So back to my story. When I watched that story about Carlie and allowed myself to wonder about Grace, I started testing her. When she was very little and still had a bottle, I hesitantly would ask (expecting no response) “where’s your bottle?” and no matter where in the room her bottle was or how long it had been since she’d last seen it, Grace ALWAYS (without fail) knew where her bottle was and pointed with her eyes. So I was like “hmm. Ok. Maybe she’s smarter than I thought.”
A few months ago, I tried another test. I put her food down and said “Grace, you can have another bite when you lift your legs.” Again, I expected nothing to happen. I wondered how she would even know what legs were. I never gave her an anatomy lesson. How could she know? And immediately, her legs shot up.
Since then, we play the “Legs up! Legs down!” game and she loves it. We don’t warn her it’s coming. We don’t point to her legs or demonstrate. We simply say it and she does. You can see Grace playing ‘legs up’ in the video below.
I think a big part of raising a child with Rett is not dumbing things down for them. I talk to Grace all day long. Just like with my other kids, when I put her shoes on, I say “Left foot. Right foot.” and whatnot. I’m always narrating our lives and so I know that Grace knows what’s up. She’s super smart and I firmly believe that she’s level with her peers. Perhaps not in certain ways. Like she may not be as smart about cause and effect or manners or playing Angry Birds or the other things 4 year olds know by doing and experimenting with life. But she isn’t impared. The bits are working, we just need to learn how to make the most of them and bring to world to her.
Glad she is aware and smart.
Scott
Thanks for posting. Definitely going to try this with my Rett girl!
I do not have a child with Rett but I have a cousin who has a daughter with Rett. No matter who you know or what your situation is you should cherish your child and Grace is no exception. Legs up and legs down is bringing her joy and that is wonderful. Thank you for sharing and sending big hugs to Grace 
I love it! It’s so great that we all have our own ways of knowing that our girls are “in there”, and seeing just how much they enjoy communicating with us like this!
Grace, (Maybe mom can read this to you)
I think you are so smart and beautiful! Way to go on making your legs go up and down, that is tough work and I am proud of you! I have a little girl just like you and hope that one day you and Melia can meet- and I hope I can meet you too because I think you are AWESOME!!!
Note: There’s video in this post. If you’re reading in your email inbox, click here to view.
Because Grace has Rett Syndrome, we’ve been catapulted into a whole new world in the last couple years. Aside from running Gracie May Photography, photographing families and weddings, I’m on the board of Cure Rett and I help to run a campaign to photograph girls and women with Rett. It’s called the Picture the Hope Awareness Tour and photo shoots are only part of what the tour is about. This video is a little behind the scenes look at what happens during these photo days. It’s really changing my life and everything I thought I was going to accomplish when I started this photography business.
My daughter has Rett and is 4 also! We would love to be part of your photo shoot! I am a single mom and would love to capture the bond we share!
I shared it on Facebook.
Wish I had many millions of dollars!
Just know I support what you are doing.
Great Video!
Scott
LOVE LOVE LOVE! Would be awesome to see this in Australia, maybe after I pop out this bub I can get something going?
Note: There’s a video at the end of this post. If you’re reading in your inbox, click here to see this post on my blog (it’s prettier there, anyway!)
The majority of my childhood spanned the 90′s. Like many people my age, I grew up making fun of my friends by saying “duuuuuh” while holding a limp wrist to my chest. And I donned the stereotypical American youth saying “you’re such a retard”.
I’ll start this post in all honesty by saying I’m really torn about the “r-word”. I usually laugh when I hear it in movies (like Napoleon Dynamite, a caricature of American youth – not real life), but when Ann Coulter (a real life person) called Obama a retard on Twitter and then totally justified herself on Piers Morgan, I went into a momentary blind rage.
I don’t know why I’m so torn. Why I can call my husband a retard and we laugh (something I only do in private and with an exaggerated American accent) but when I hear someone else say it, it grates on my senses. When I hear people use the word, it makes my hairs stand on end, almost immediately, before I really even process what I’ve heard. It’s instinctive.
Ann Coulter’s infamous Obama Retard tweet
I’ve historically been a pretty judgemental person. A know-it-all. I’ve changed so much since the arrival of my beautiful daughter who has brought so much grace into my life and made me see that you really never know what it’s like to be someone else. You just. Don’t. Know. So along those lines, I never understood how some black people could call each other nigger and say that it was empowerment, a way to take the word back. I judged them as unintelligent, illiterate, uneducated. But now, I totally get what that’s all about. Because while I shudder when I hear someone use the word retard, I privately call my husband one. And when I do, it always feels like…well…like giving the “r-word” the middle finger, ya know? I do secretly think “I can use this word. YOU can’t!”
But on the whole, everything in me knows that the “r-word” is a curse and wrong. Of course like all slurs, it has roots in wholly appropriate language. Retarded is a real thing. Mental retardation happens. And I don’t shy away from this word when it needs to be used. When I asked the geneticist “is my daughter retarded?” she became uneasy at this word which has become politically incorrect. She said “we like to call it developmental delay.”
“Ok” I said. “So she’ll catch up?”
“Well….no.”
“Ok…so then it’s not delay. It’s retardation.”
She changed the subject and told me that should I get pregnant again, I should have an amnio before 20-something-weeks so I can abort. Hey lady, way to take a mildly politically uncomfortable situation and drop into one of the most emotionally charged political subjects known to man. Hats off to you – you get the awkward award.
But she was wrong and sorely misinformed. Kids with Rett aren’t retarded. They’re locked-in. If that geneticist happens to be reading this, please…go to a conference or something before you ever talk to another Rett parent again.
Technical lingo aside, this word is now being used against people who are intellectually different from others (aren’t we all?). So it’s now a swear word and this is where I get conflicted. Should I allow ignorant people to determine the words I use? Or use them myself as a way of saying “get lost. YOU won’t dictate the words I will and will not use.”
No matter what conflicts I’m personally battling inside my own head (I over-think things, can ya tell?) one thing is certain. Words hurt. Words like nigger, fag, chink, kike, retard…these words are a way to take away someone’s humanity. To make them a…a…thing. To marginalise them and say “you belong over there”. When people use words like retard, it’s prideful and superior. It says “I get to choose who and what you are”, placing yourself above others. And to people like me who care for a child with a severe disability, it just makes them look like someone without empathy. Or the ability to acknowledge that you don’t know what it’s like to live in someone else’s shoes. It’s small-minded and highlights a severe case of emotional retardation.
But where does it end? When men and women call each other “hot” are they not also labelling each other? Marginalising, grouping, categorizing people according to their appearance? Why should we get to say where people belong in the order of things?
So I’m throwing this blog into the internetosphere to implore you. If you use the word retarded in any way other than its actual, technical meaning, please stop. And if you say it around me, I will educate you
beautiful post …sometimes when we are unaware of what reality holds for us, its painfully easy t go light on it. until the reality strikes.
this is a word im always afraid to say for people who are sometimes far better than us even with their physical limitations. they are gifted
muc love to your lil pretty lady
Your only offended when Obama is called it? Obviously YOUR the RETARDED ONE!!! Liberal RETARD 
I feel the same way. I am also a 90′s kid and grew up saying all those same things. I remember as a teen also being conflicted about the word retarded and still to this day the n word with black people. So glad that you speak up and post you thoughts!
Great post, Elizabeth. For me personally, this reinforces the need to ‘behave’ all the time with our language and not let that vigilance lapse EVEN for a laugh when in public. One day we might be the victim in that name calling.
And Ella, I think you need to read and absorb the whole post rather than hurl abuse at someone who is saying the word retard is only acceptable when it is used for a technical definition.
Too bad Ella stopped reading after you mentioned the name Obama. Your post was very enlightening. I too had a child who had a health condition that drew the attention of others. He was diagnosed with a brain tumor when he was 9 years old and passed at 13. The in between years was accompanied with side effects that were noticeable. That sometimes brought hurtful comments. I think being educated by someone who is walking the walk should be commended not condemned. You did not actually say you are crazy about Obama. You said that the name calling was inappropriate. That’s what I got from your comment.
Keep informing others about Retts. You speak with authority, honesty, and love.
Ella – If ‘YOU’RE’ going to offer an opinion, it would help for people take ‘YOUR’ opinion seriously if you actually offered one that is in conjunction with the topic. ‘YOUR’ ignorance is showing.
Thanks for your lovely post Ella. I’m Grace’s Dad and more conservative than most conservatives. I’m not offended at you using spiteful and sad words, I’m more hurt you called my wife a liberal
Please be nice and civil though, remember this is for my severely disabled daughter, whose brothers have a hard time at school when children say these types of things to them about Grace.
I’m the sister of a beautiful, funny, intelligent girl that makes me think that sometimes I’m the one with “special needs”, not her! I’ve struggled SO much with the use of this word – me using it at home (ok?) or my friends using it and then my hair stands on end in rage!! This blog is perfect and fits so well with what’s in my head!! Thank you!
To dear, sweet Ella… you are the “kind of people” that make me think these words will never be dropped from our vocab because of “insert kind of person here” like you.
As a teacher, I had to deal with kids calling each other names all the time. I didn’t like it and don’t like it.
All it does is hurt.
Thank you for speaking out in this post.
Scott
You posts are always so timely. I’ve been dealing with this lately and recently called somebody out at work for using the ” R word thanks for another great post
Just following up on the comments
Click to watch the infamous Familiy Guy barfing scene. I cry tears watching this.
Grace has weeks where she throws up multiple times in the day and night. It’s a mystery. She’s happy, chatty, no fever, not sick and then -BLEEEEEEH!!!!- it’s, like, EEEEEEEEverywhere. The other day, she threw up in the car on a roadtrip and we had no choice but to drive the next hour until we could get to our friend’s house and bathe her. She continued to vomit and, poor boys, her brothers were utterly mortified. Jack got sprayed a bit and now, he will only sit in the front seat when she’s in the car. Can’t blame him.
The past few nights, she’s vomitted multiple times in her sleep. Sometimes we catch it, other times, she doesn’t make a peep and we just discover it in the morning.
It all sounds quite horrific, but she’s still laughing, smiling and happy. And that’s the measuring stick I use when deciding if I’m gonna freak out or not.
Grace in her barf scarf
Why does she have these periods of puke? I just think she just gets reflux once in a while. We have a family history of dairy intollerance. I’m mostly dairy free and I have the odd cheese here and there, but every so often, my body reminds me why I should be completely dairy free because I get horrible pains in my stomach, reflux, bloating…the works. Grace’s diet is heavy on dairy because it makes things creamy and edible and provides easy calories. When she has a tube feed, that’s dairy as well.
Also, in the winter she gets a bit bunged up with phlegm and doesn’t have the physical ability to do anything with it. So she coughs –> gags –> vomits. And this is how she clears her chest. It’s not even vomit – just congestion.
But vomitting in itself isn’t what this post is about. I want to tell you a few tips for handling a lifestyle of vomit.
Layers. When Grace is having a puky week, I dress her in layers that can simply be stripped off in the event of a pukisode. I have to catch it fast, though, or it permeates the layers.
Catch it. Literally, I catch vomit. I keep her near me when she’s likely to vomit and as soon as she coughs, I bowl a towel under her chin and catch. Makes for quite an exciting challenge. They should add it to those crazy asian gameshows. Eat a cockroach, catch some vomit.
Barf scarf. It’s a heckuva lot easier to wash a scarf than clothes. So I wrap Grace in a scarf on a barfy day. This also protects her harness on her wheelchair which is pretty hard to go without while it sits on the radiator drying. Just whip the scarf off and throw it in the wash.
Gaviscon. I give her child Gaviscon in her PEG tube when she’s having a rough week.
Bedtime. At night, I cover her pillow in a fleece blanket (things don’t soak through fleece as easily) and lay a blanket over her sheet. I keep her hair up. This doesn’t really make it too much easier. We still have to bathe her in the night or morning, but at least we don’t have to wash her pillows or completely strip the bed. And she smells good after her multiple baths!
Upright. She’s pretty much always upright, anyway. But she has a hospital bed so we prop her up a bit to sleep.
Laugh. If you don’t laugh, you cry. Apart from the moment she’s actually chucking it up, it doesn’t really bother Grace. The sight of Grace with a puke beard, laughing at me freaking out is all it takes to make me lighten up. If she’s not bothered, then I’m not bothered. She gets extra baths, the laundry gets done and I get to curse at Rett Syndrome a few extra times that day.
Do you have tips for dealing with your child’s vomit? Post them in the comments!
When my daughter was little (crib) I fed her a bottle once and I am guessing she didn’t burp enough gas out of her system.
She lay on the bed, face up, and I remember a cylindrical column of milkish white as it shot about two feet up and onto me. Missed my face, but…oh well, you are right – she was okay, so was I.
Scott
Sometimes when we travelled places that we needed Livvy to get there vomit free we dressed her in a painting apron. I know it sounds crazy but it worked. We had towels a plenty and a massive electric bill. Nothing seemed to help but I just comfort from the fact that she thought it was hilarious especially when it grossed her sisters out.
I can almost relate – I remember the shock I felt as Deanna ( then 3 months old) vomited once and hit the wall that was on the OTHER side of the room from where we sat. about 11 feet away, projectile vomiting there is nothing like it. Her issue was also dairy. She is still reminded now and again what a BAD idea mildshakes are.
I have to tell you Elizabeth, we are very proud of you. You have kept your sense of humor in a very trying situation, and I love your practical approach to this issue. Your daughter is truely fortunate to have you for mom, and after spending some time with her here in the states. I think you are extremely blessed to have her. God Bless – We are praying for that cure!
Dear grace’s mum,
I read your blog all the time. my friends’s daughter has also rett.
My two boys have reflux and one of them is allergic to cow milk. The 1 1/2 old boy (Marc) has also motion sickness so we practically cant take him by car even for a 10 min of driving. but sometimes we have to (going to the doctor,…). so here some ideas to avoid having her vomit everywhere:
1- i always put him a bib for babies made from hard or soft plastic and which has a pocket. It is easy to clean and while she is vomiting you can always hold the bib with your hand.
2- In Lebanon, no one care about the environment so we have lots of plastic bags. I use it a lot for marco. while he is vomiting i hold the plastic bag like if it is a plastic box. It is so easy to close and to throw.
3- Also plastic containers are helpful.
But if we are going to visit our parents (1 hour of road) we intend to leave our apartment when it is marco’s nap time.
Finally, no words can explain how much I admire what you are doing for your daughter.
by Grace for Rett