I love the fact that I get to make all these fantastic things for these beautiful girls (women) and boys (men) and I will keep doing it as long as I am able. I don’t think I need a reason to make someone’s day a little brighter but this is what I can give.
With this in mind, I thought I’d answer some of the more frequent questions I get asked.
Q: How do you get a birthday card or a graphic?
A: You just ask, it’s as easy as that, and I will make it as fast as I am able.
Naturally a little notice would be good because I have an editor (Grammy), without whom I’d be lost. So your card gets designed, goes to the Grammar Fairy, who makes sure I’ve not chewed up the English language.
Q: Aren’t you too busy?
A: No, I’m never too busy or too overloaded for your request. Please don’t think you have to wait for me to deal with everyone else. Everything comes out in due course and if I have more to do it just comes out a little slower.
Q: Do I have to request a graphic every time?
A: Yes, some of you have been my friends for many years now, and I know you might feel comfortable with me just going ahead and making something, but sometimes you might just want some privacy and to hide from the rest of the world. That’s okay.
Which is why I ask you to opt in to the things I make that get shared publicly, because I want to make sure you are okay with it.
Sometimes I do just go ahead and make something personal, but I share them directly with you, then if you choose to share them, that’s totally cool too. I would do this more often if time permitted, but it’s difficult to catch everything on Facebook, so I miss a lot of stuff, and also don’t have as much time as I would like to make these things.
Requests are pretty much optioning in, so if you’re asking me to caption, it’s all good 🙂
Q: You didn’t make my thing!!!!
A: It’s never intentional, I get requests via so many different sources that it can sometimes be mayhem to admin them. I try my best to get them all into a manageable organised place, but I’m bound to miss something because Facebook is not designed to be an amazingly organised tool. Sometimes images get corrupted in the upload, and other times the tags do crazy things.
I’m totally okay with you getting in touch to ask me where something is, please give me reminders.
Q: Is Army of Us just you?
A: Very definitely NO. I’m only responsible for bits of this.
We are growing, and as we do so does our team. The awesome profilomatic had about 1% of my work, the rest is the amazing techs. There are people who help with the graphics and there are a bunch of lovely ladies who help with the grammar, the spelling, the translations to different languages. We don’t exclude people from helping, you’re already helping by getting involved and sharing, by sending your pictures and being part of the stories. What we do is not about us, it’s about the girls and families we do it for, so we’re intentionally trying to keep that as our focus.
We look at ourselves like the people who supply the placards at activist events. We’re pointless without you.
Q: Is Army of Us a charity?
A: No, we are a social activist group.
We have one goal, to make as much noise about Rett syndrome as we possibly can. We want you to join in and make some noise too. You are welcome to support any charity you like; we will work with anyone interested in making noise and we will never tell you who you should support.
You can help us, we need you to like and share our page, the more you do, the more noise we can make.
We are all volunteers 😀 So sometimes things don’t happen straight away. There might be another campaign running that we are focussing on, so we have to come back to other things. This is very much the case in Awareness month, but we will get around to it.
I hope this clears up any questions, but if you have some more we’ll be happy to answer them.
There are very few symptoms practically every person with Rett shares, but repetitive hand movements is one of them (also referred to as stereotypic movements).
These hand movements were one of the first things that Andreas Rett noticed when he classified Rett syndrome.
They are identified as a classic symptom of Rett syndrome, but also not only indicative of RTT, you find them in other disorders too, like CDKL5.
Part of the problem with explaining RTT, is that nothing is easy to explain, it is incredibly complex syndrome, even identical twins with the same mutation, show different symptoms with varying degrees of severity.
Repetitive hand movements are one of these things that are hard to explain, not just scientifically, but because every person has a unique way of expressing this stereotypic movement. Sure some of them can fall into greater “categories”, but each person does it differently.
Some hand-wringing, some hand-wash, some finger-twiddle, some finger-tap, or hair-pull. Some do more than one. Some only do it when they’re nervous or anxious, some do it it all the time, but all of them are free of this symptom while they sleep.
So you can’t say all girls hand-wring, because they don’t, the frequency also varies, some girls do it far more frequently than others. Some stop doing it for years, then start again and some appear to be free of it. Some do it so seldom it’s hardly noticeable, but some form of stereotypical movement is always present at some stage in their lives.
So what does it mean? It means that she loses the ability to use her hands in any meaningful way, and what do I mean by that? She loses conscious control of her hands.
Combined with Apraxia, stereotypical movements take away the ability to write, draw, point, or used your hands to perform any form of task. It’s almost impossible to feed yourself because you can’t hold a spoon, or to drink from a cup, you can’t put clothes on or take them off. So when we say a girl with Rett syndrome lives in a prison of her own biology, it is because of things like this.
Any constant action will cause damage over time to any individual, and stereotypic movement is a massive part of this. Over time fingers get twisted from constant motion, calluses form or skin dries and cracks from constant moisture of being in the mouth, cuts and scratches scratches from teeth and sharp nails, so hard to clip and maintain (another one of those little things people take for granted). Hand-mouthing can affect the structure of a child’s mouth, depending on how much of her hand she has in her mouth and how often.
There are many things we know about Rett syndrome, but we don’t know the reason for these repetitive movements.
We believe that some receptors in the base of the brain are responsible for repetitive movement, these receptors regulate certain functions through the release of hormones and neurotransmitters. We know that Rett syndrome is a neurological disorder, so it makes sense that these functions would be affected by it. If it’s playing havoc with the rest of the brain, it’s bound to playing havoc here too.
These hormones and neurotransmitters are also responsible for things like anxiety, aggression, appetite, cognition, learning, memory, mood, nausea, sleep and more. When you tie these things together it once again makes sense, it’s like a reading list of things that RTT affects. So it’s understandable that when she’s feeling anxious her stereotypic movements increase in frequency.
We have identified it as a something we need to learn more about, we’ve also identified it as a place for future treatment. These receptors have been the target of a number of preclinical trials, and work with them continues.
Each of these girls is completely unique in the way her stereotypical movement manifests itself, which means means an effective aid for this is down to you as a parent to formulate. Once again, I’m not a specialist, so also consult your doctor, or Rett representative about this.
Gloves, hand socks, wrist supports and arm braces, are practical helpers in the everyday war of Rett syndrome. Gloves protect hands from moisture and cracking, or plain wear and tear, socks on hands to the same thing, both of them change the texture of her hand in her mouth. Arm braces stop girls from pulling their hair or also stop from putting her hands in mouth. Wrist supports stop the awkward angles and bone twisting, nerve damage that progressive movement can cause.
Our hands are one of the things that truly set us and other primates apart on the evolutionary scale; they’ve been our all purpose tool for getting things done right the way through our existence.
When we couldn’t use them directly, we used them to build something to use. Purposeful hand movement is another thing we take for granted; just imagine what it would be like not to have functional control of your hands.
Where your hands, although present and extremely capable, have a mind of their own doing their own thing, sometimes even harming you in the process.
I wanted to talk about hands, because I’m asking you to use yours. In this awareness month, use your hands to reach out for Rett syndrome, and help us tell the world about it.
Share our pictures and our story please.
Things other parents do about this.
While we don’t know how to treat it yet, there are some things we can do to help. I’ve already mentioned socks and cycling gloves which helps hand mouthing, scratching and skin irritation. Socks on her hand, discourage her from putting her hand in her mouth. I’ve mentioned cycling gloves because they’re fingerless, they’re also cushioned if it’s clapping.
It’s also important to have a good moisturising regime, if your daughter puts her hand in her mouth, make sure the moisturiser is not harmful if swallowed.
While I was at conference, I met Jan Erickson. Jan makes arm braces for girls with Rett syndrome, her Grand Daughter has Rett syndrome. Which she sells from her website. Jan is a wonderful woman who will make anything you need.
These are generally fitted and supplied by your Doctor, they are useful to avoid injury through sustained action of unnatural wrist activity.
Hair-pulling, many families have chosen to cut her hair too short for her to pull, and in many cases she grows out of it. There’s a bunch more on hair pulling in this blog I did previously.
I’ve created some really big banners, and some mini timeline graphics. Please bear in mind that this story is about hands, so sometimes the faces are obscured. I will be working on releasing others with faces too.
Big banners – These Banners are very big images, but they also include every image I was sent. I’ve made banners, because I wanted to show people why we are an Army of Us. So the next time someone asks why do we do this. I’ll just link them here.
I’ve also created 2 frames in the Profilomatic with the following message :
There’s things that Rett syndrome can never take from me the love, the quirks, the laughs, they are all a part of me and through all the problems and pain it gives me every second of every day, fight it, I defy it and I define me.