The raddest rettsite on the interett

Portsmouth’s QA hospital has no disabled changing facilities?!

09.09.13

Today we went to QA hospital in Portsmouth for Grace’s routine eye appointment. She needed a change and I was told I could “use a room in the peds department”. I was thinking “oh, great…a changing room!” Uh…not exactly. When I went over, I was told “those rooms over there are free.” What I ended up with was my nearly 5 year old kid on a baby changing area which (as you can see) she didn’t fit on. Of course, I just laughed. And remembered that before I had a disabled kid, the need for this would have never crossed my mind.

So upon further questioning, it seems that this HOSPITAL (let me repeat….HOSPITAL) doesn’t have any changing facilities for the disabled. Nada. Here, it says that QA is “fully accessible for people with disabilities.” Unless, of course, they happen to exercise their bodily functions.

Someday, Grace is going to be my size. And it’s hard enough already. Most places don’t have disabled changing facilities. So we have to find floors or places where we can deal with it. That’s understandable for TGI Fridays or McDonalds but a hospital?!

Sort it out, people! This isn’t acceptable. Grace and all the disabled people visiting the QA hospital deserve dignity in their already very difficult situations.

P.S. QA, If I’m mistaken and you do have disabled changing facilities, then you should let your staff know. I (and everyone sharing this post) eagerly await your wonderfully positive response.

P.P.S. You can email them to join the campaign to get this changed at PALS@porthosp.nhs.uk

This Rett Tribe

06.13.13

“…there are so many variations, interpretations and individual experiences of bringing children into and up in the world, that giving birth in itself is not a unifying experience.” –Sara Bran

It’s so true of motherhood that simply giving birth doesn’t make us in the same tribe. I found that when I was home educating, even being a mum AND homeschooling didn’t = tribe. Because there were the organic mums, the laid back ones, the overbearing ones, the Christian ones and then the families who ‘let the spirits name their children’ and did séances (uh…”the family who contacts the dead together stays together”?). There were the ones who did school-at-home and then the un-schoolers.

I’ve also found this to be true of having a child with Rett. Merely having a child with Rett doesn’t mean we’re all in the same ~~clique~~ tribe. Rett isn’t a tribe, but I guess in the beginning I kinda thought it was. You would’ve thought that my experiences in the home ed world would have better educated me to this end. I came into the world of having a disabled child with the idea that we were all in this together and that meant that we’d all be friends. But even though we’re a subculture who can throw around medical terminology like noone’s business, we are still all so vastly diverse that we’re bound to find difficulty all seeing eye to eye.

There are very strong opinions on where charity money should go (research only? care only?), whether the kids should be medicated to the hilt or not, some who find value in alternative therapies, those who are dead-set against vaccines and those who love ’em. There are glass half empty people and glass half full. Those who find a joy in raising a child with disabilities and those who hate it. Poor people. Rich people. Mums who work, mums who stay at home. There’s no end to the diversity to be found in this Rett life.

So I may be thinking “can’t we all just get along?” but the only person I can control is myself. The only person whose opinions I can change is me. The only person who I can force to love others anyway is ME. I say why not just “live and let live” and be aware that just because our kids have the same diagnosis, that doesn’t mean we’re automatically in the same tribe. And that’s ok. Right?

ELC’s Magical Music Disc

06.10.13

I got a tip from a friend about this toy from ELC. Special needs toys can be crazy expensive so it’s cool when you find a toy that’s mainstream and good for your child with difficulties. This one is a steal at only £12. It’s called the Magical Music Disc.

Even with very limited hand use, this toy encourages her to reach with her one usable hand and this toy activates music and lights with even the lightest of taps so it’s as motivating as a big red switch button without the hefty cost!

“…that strangers you will love will move in behind our faces.” Thoughts on curing my daughter

06.04.13

“This is what we hear when you pray for a cure. That your fondest wish is that we will cease to be and that strangers you will love will move in behind our faces.”

-Jim Sinclair

Do I wish Grace didn’t have Rett?

Is depends on which day you ask me. One day, I’ll say “I’d go to the ends of the earth. Do whatever it takes. Give my own life if she could be cured.”

On another day, I’ll say “of course not! Rett is part of who Grace is whether I like it or not.” Sometimes, the very hatred of Rett makes me uncomfortable because there’s this perfect little girl in my life and Rett is her cross to bear. And if I just stand there and hate it, am I not hating part of her? If she was ginger here in the UK where you get ridiculed for being a red-head, would I say “I hate ginger!”

“But having red hair isn’t an illness” you say. Which brings me to my next dilemma: is Rett syndrome an illness? Or just a difference? Is Downs Syndrome an illness? Is being gay an illness? Is having ginger hair (which we know is a genetic anomaly) an illness? This whole question of cure. Of healing. Of ‘getting better’ all hinges on these definitions.

When Grace was diagnosed I was flung into this lifestyle I never wanted. WE were flung into this lifestyle. I never imagined that my kids would be the kind of kids who, instead of yelling ‘shotgun!’ and fighting over the front seat, methodically clamp the front of their sister’s wheelchair in while I do the back – a process we’ve gotten down to about 40 seconds. I never dreamed that my 9 year old would be able to carefully administer meds and liquids into his sister’s g-tube. Clamp. Screw. 10ml. Wait 5 seconds. 10ml. Clamp. Screw. Or that these little boys of mine would be able to say to the babysitter, “I’ll teach you how to do her pump when mom leaves.” This is our lifestyle and we didn’t choose it.

Today, as I was watching the latest TED talk while doing my makeup (as I do almost every morning) I watched the most beautiful talk from Andrew Solomon. I don’t agree with some of the things he said. But overall it’s such an amazing talk about not just unconditionally loving our children, but also offering them unconditional acceptance. And what does that look like?

If you don’t want to watch the whole thing (I highly recommend that you do), then at least start watching from 13 minutes in. He says this, which I rewound and watched at least 3 times to really take it in:

“We have to think about how we feel about cures altogether and a lot of the times the question of parenthood is what do we validate in our children and what do we cure in them?

Jim Sinclair, an autism activist, said, ‘when a parent says I wish my child didn’t have autism, what they’re saying is ‘I wish the child I have did not exist and I had a different child instead.’ This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. That your fondest wish is that we will cease to be and that strangers you will love will move in behind our faces.”

Oh man…please read that again. Just typing it out had made me start crying right here in Starbucks.

So many Rett parents I know are on this relentless campaign to cure Rett. I was once one of them. I used to run a charity called Cure Rett for goodness sake. I know there will be a cure for Rett someday. I once believed (and now merely hope) this will be in Grace’s lifetime. But I’m not just hoping this for Grace. I’m hoping this for the parents in 5, 10, 15 years who will hear the words ‘your daughter has Rett syndrome’. And I believe that there are many cures for Rett that aren’t a reversal of the gene that causes it. We also need to cure misconceptions, cure communication. Cure the day to day problems these girls and women face. Cure the sadness that siblings and families live with. Cure the loneliness. Cure the loss of friends following a diagnosis.

And as for MY daughter with Rett? Do I want her to be cured? Yes. But do I want her to be a completely different person? No. Do I want her to stop struggling to breathe, scratch her itches, communicate? Yes. Do I hate Rett?

Yes.

No.

Rett syndrome has ended up being one of the biggest paradoxes I’ve ever faced.

Kids with Rett Syndrome are Smart

04.19.13

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.

Picture the Hope Promo Video

03.20.13

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.

Retard.

03.09.13

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 people of color could call each other the n-word 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 “retard” is a slur. Of course like many 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 early if I end up with another disabled fetus. Hey lady, way to take a mildly uncomfortable topic and segue into one of the most emotionally charged political subjects known to man. Hats off to you.

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 others to determine the words I 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 ni**er, fag, retard…these words are a way to take away someone’s humanity. To make them 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.