This blog is all about friends, besties, buddies and the best of friends.
I was incredibly moved a few weeks ago, when I read how thrilled one of the Mums was with the behaviour of a girl who had been so sweet to her child at a school activity, making a huge fuss of her and insisting she was included in everything. It wasn’t the first time either, I had read similar stories before, but it also wasn’t until this week that these actions started to fit together in my head.
There is something about Rett syndrome, that brings out the best in people who take the time to stop and be a part of her life. However, these people that stop are extraordinary people too, beautiful people who just by paying attention, choose to be a good part in someone’s experience and life. Wonderfully generous souls, who share affection, kindness and connect in such a fantastic way.
These wonderful kids, who are the antithesis of bullies, who push forward to be remarkable, and not just be part of the crowd, who, just like our girls, shine, shine with their kindness. It takes a special person to stand up for the right reasons, and choose to be kind. I believe that compassion is one of the most important things that make us a human, and these wonderful kids have it in oodles.
These are the people we should be celebrating as a society, these are best examples we can give to the rest of humanity. Kids who look past the things that make us different, and celebrate the things we share. It doesn’t matter that she can’t walk, I will walk with her. It doesn’t matter that she can’t talk, I will talk to her. I will take the time to treat her like I would all my friends, I will be patient, and be kind and I will be a part of her life.
I wanted to create a tribute, to all these fabulous friends. What you do is appreciated so very deeply, we are eternally grateful. You take the time to be a friend, you figure out that our girls are just like you, they love to play, love to laugh, love to love and love have friends.
I look forward to the day that biographies that we read are not about sportsmen and businessmen but about celebrating being human, people who are wealthy because of the love, kindness and experiences they bring to the world. Who are shared because of the ideals they stand for, people that make the world a better place for all.
When your next opportunity arises, choose to be extraordinary.
Some of the stories I’ve had from parents over the last week while getting the goodies together for this blog have been so downright cool. I can feel how much love they have for these children, that go out of their way to be remarkable, because that’s what we should do, that is what really matters.
Hair is such a massive part of human life; it differentiates us as humans from practically every other species. Even among ourselves we have completely different hair types, colours and textures.
It can be a source of pride, even a source of vanity but mostly, it is a big part of what makes us who we are. We can choose to grow it, cut it, dye it, curl it or even shave it completely. It reflects our interests and our influences, it’s an age gauge, a health gauge, it’s a vital part of who we are.
Hair often has deep cultural significance and history, like the story of Samson, from times past and the Persian tale of Rūdāba, to a more modern age where stories like Rapunzel, a German fairy tale from the Brothers Grimm, is retold by Disney in an even more modern format.
Hair defines cultural movement from activism to causes. Throughout the ages hair styles have been a part of defining us as a race, or a tribe. Identifying people who share a cause, or even just follow a fashion, like rockers, hippies, punks and skinheads. It has been and always will be an intrinsic part of our story. Your hair truly reflects who you are.
Which is also why hair can also be a source of tremendous frustration and despair to parents and carers of people with Rett syndrome, as there are so many obstacles Rett syndrome puts in your way, making it tough to deal with the simple requirements of every day life, like brushing hair, just seems unfair. There is a big identity crisis for any parent of a disabled child who fights to ensure that their child is not defined by their disability, a fight to recognise and retain their own identity.
When your hair is such a vital part of your identity, when you are forced to cut their hair because of it, it seems like you might be losing that battle.
Our hair can be a victim of our anxiety. You’ve heard the phrase “pulling your hair out”. Well that phrase is a reflection of being unhappy, frustrated, anxious, nervous or even under pressure.
What you might not know, is that there are many conditions that affect hair too, impulse control disorders like Trichotillomania that are incredibly difficult for anyone to deal with.
Girls with Rett syndrome suffer from extreme anxiety and frustration especially in regression, when they start to lose the skills they’ve learned or developed, and sometimes they start to pull their hair out. We don’t know if this is due to the anxiety or if it has something to do with repetition movement that is displayed in hand-wringing or sucking or tapping. What we do know is that it is another very difficult symptom of Rett syndrome, and although not every child suffers from it, far too many still do.
Hair pulling is traumatic for both the child and the parent, and the general consensus when your child starts pulling their hair out, is to crop her hair too short for her to pull. At the time it seems that Rett syndrome is forcing itself on her identity again.
I remember reading a story from a mum who was having to cut her daughters hair. She was distraught, Rett syndrome steals so much and now it was stealing her child’s curls too. Her daughter was the only girl in the family with curls and now she had to cut those curls off. It was heartbreaking, however it was also not forever.
In most cases it’s only when she is going through a regression, after a short while it’ll grow right back again.
Hand mouthing and hair sticking
Some girls hand mouth a lot, and their hair can end up sticking to their faces, and getting in their mouths, cutting her hair shorter or keeping it away from her mouth in braids or buns can help, but doing or making braids can sometimes be difficult. Scarves and scarf bonnets can equally help keep the hair out of her face.
This is not the only issue with hair in Rett syndrome, brushing, cutting and maintaining hair can be a very difficult thing. Simple things like the headrest of her wheelchair can matt her hair horribly as she moves her head about throughout the day; combing that out can be a painful experience, for both you and her.
Don’t let her hair get you down, because when something gets you down, it gets her down. I believe people with Rett syndrome are very observant not only to circumstance but also to emotion. Like other children they can read and tap into your mood. If you’re anxious they will be, if you’re frustrated, then they will be.
So where does this leave us?
While Rett does steal so much, it can’t steal the moments every mom shares with her child, the simple routine of doing your daughter’s hair. That ritual is more than just brushing, washing and making her hair fabulous, it’s a moment of genuine nurturing, where you get to tell her how wonderful she is, how special she is. These, sometimes mundane, moments are also the comfort moments we love and share. Yes sometimes they frustrate us, sometimes they make us angry and unhappy, but most of the time they allow you the freedom to just be, to be a Mom or a Dad, to just breathe, to relax into a relationship built purely on affection and every day fuss.
Our girls are beautiful, they shine, they shine regardless of the length of the hair, the tightness of their curls, the colour, the texture, Rett syndrome does not define her, but neither does her hair. She is defined by the beautiful person she is.
Sharing, caring, tips and tricks.
While that is the end of the blog, here are some other things I have learned while writing it, tips, advice, or just plain information. Please, please, please share any ideas or advice you might have, or if you want to ask for advice, feel free, I’m not an authority on hair, but there are lots of Mums who can help and give advice.
This blog was started as a request from Christina, who was faced with the anguish that happens when she accompanied her niece and sister to the hairdresser gets her nieces hair cut had. She asked me to get tips and tricks to help, to try generate some discussion around hair. When I started to look into this, it rapidly became more than this.
Hairdressing advice sometimes is more trial an error, finding something that works for you. So while these are tips, they are not guaranteed to work for you.
As an example when Faith takes Sophie to the hairdresser it usually involves one person to hold her on their lap, another one to help her sit up, and a third to read and sing to her.
An unhappy girl or woman is going to make it very difficult to cut her hair, so you know you’re going to have to bring something along to keep her attention and let her know what you’re doing. I know it’s difficult, but you might need to take her preference into account. What is easiest for her?
During the course of this blog, I learned a lot more about hair then I ever knew, now when some asks me if I want to play some golf, washing my hair is a great excuse. Sorry Bob, I’m braiding my hair, washing my scalp, rinsing it thoroughly, then conditioning it, once I have conditioned it I will be applying hair moisturiser and then oiling. After which I will thoroughly dry it. I do not have time for golf 🙂
Brushes and combs
Knot Genie and Tangle Teezer brushes are a similar style brush, both very adept at keeping knots at bay and making smart work of problem hair. Designed to carefully untangle hair, they are much gentler than traditional brushes and/or combs. The people who use these brushes swear by them.
For hair matting run a little Argon oil through it when that happens. Oil loosens knots where water tightens them.
Use hair moisturiser and then oil hair, they’re not the same thing. (I did not know this, in fact I did not know either existed)
Washing and maintaining hair. Sorry some of this might be general knowledge, but all tips are good in my opinion.
What a lot of people don’t know is that shampoo and washing can quite often be the cause of knotting. Some tips for this are to wash your scalp and not your hair, if you do choose to wash her hair, wash it in a braid.
Use conditioner to add weight and protect her hair, heavy strands in good condition are less likely to fairy knot. Make sure you rinse her hair thoroughly, get rid of all the shampoo.
Dry her hair using the cold (or warm) setting and avoid the hot.
Sleeping in loose braids is a great tip to keep her hair easily manageable in the morning.
Sleeping in a bonnet or a scarf can reduce knots.
There are so many great examples of “hair pretties” made by Mums (and friends) out there. I see pictures of girls with a new hair pretty for every day, like it’s her trademark.
I’m sure you have so many more tips and I’d love you to keep sharing them on this blog.
Thank you to all the Mums, Aunties and friends who shared and helped with this blog. Once again there is an Album to go with this blog, if you have advice, a tip, a trick or a photo to share, please don’t hesitate to contact me.
We come into this world connected to our Mums, and spend the rest of our lives connecting.
Part of that connection is verbal, through words and sentences, but I think language is just a more obvious way to connect. There are some things words can never do a good job explaining, the deep comfort of pure love, the loss and anguish of heart break, the sincere trust and comfort of friendship.
We can tell someone we love them, but we can also show them. I think actions are much deeper than words; the bond to an action of love has so much more sincerity. Your actions cannot lie, but your mouth can. Sharing those special moments, where people connect deeply and sincerely, through a passage of emotion. When you look at someone and you say inside, I truly love you. You make me feel special, you make me feel like my heart and soul are protected. You fix the aches, the pains, the despair, you complete me.
The choice you make in life is who to share that connection with. Truly connecting opens you up to whole world of love, and sometimes to a world of pain, but the pain is worth the love in my opinion. Shutting yourself down means you miss the good, you miss the love and love is a risk.
It’s one of the reasons I think people with Rett syndrome truly shine, because they don’t have the words to tell you, they can only show you. Sometimes they don’t even have the actions to hug you or hold you, or even kiss you and because they’re not talking, you have to listen differently. We already do this to some extent, we read body language, we discern micro-emotions, we talk with more than just our voices, but the ability to talk, means that we ignore those feelings more than we should. In the case of Rett syndrome, you have to listen harder, not with you ears, but with your heart.
When you do start hearing, then the love pours from them like a wall of power. Tap into that, you might want to hear the words, but you don’t need to. Those are the connections we share, and if you want to understand what it means to connect, spend some time with one of our girls.
Love is not a word you hear, it’s something you feel, and when you feel it, you are connected.
This blog started when I saw the picture of Avery and John, one of so many amazing moments that we capture. I saw the connection and made the picture. The next thing I knew there were lots of people sharing their connected moments with me. It quickly turned into a tribute to all the Dads, Grandads, Uncles and men in their lives. I love that we can do this, that we can find these positive, beautiful moments and share them.
The quality of the image doesn’t concern me, all that matters is that moment. That connection. If you have a connected moment, please send it to me and I can add it to the album.
I’ve been asked what is Army of Us, and I thought a blog is a good way to tell people.
Just to clarify, Army of Us is not a charity. We haven’t formed to compete with any charities or decide where money goes or anything like that.
Army of Us is not an I, it’s a “we”; there are people who are constantly involved in it, who make things for it, build things for it, go and find stuff out for it. There are people who design, edit, write, plan and who share knowledge and ideas. We are a loose collective and anyone is welcome to be part of our conversation. When you start talking to us, you are part of it. As individuals, we all have our own charities we support, or multiple charities, we all still raise money and do events and do the other things we’ve always done, but that has no bearing on us helping you – or you us.
We want to celebrate happy moments and special days, we want to spoil our kids, those with Rett syndrome and also those without. We want to educate people about Rett syndrome, and support them by providing useful knowledge information in any format.
Army of Us is SAM – a Social Activist Movement – designed to help the Rett syndrome community (and some other related disorders) to tell our story, communally. The graphics we make, the stories we share, the ideas we have, are all here are for you. We’re not here to decide how you use those graphics to raise the money, whether it’s for your own child’s needs, like an eye gaze, a bath hoist or if it’s for a Charity, whoever you want to give to, is your personal choice.
Our goal is to is help you raise the most awareness and money in the best possible way we can, whilst sharing the things we all care about.
We are here to help you realise ideas, to bring our experience in both fundraising, marketing, design and many other skills to your aid. We don’t take payment for our services, all designs are offered for free, with every intention of staying that way. Our services are donated. There are no hidden costs, we pay for the webservers and software out of our pockets, we don’t claim expenses, it’s all part of the donation.
We will help individuals and Charities, all Charities. The only very simple rule that we have is there’s a queue, and we don’t queue hop. We treat everyone equally and fairly, we don’t turn down work. There is no one more special than someone else. If something is a little slow (very seldom) it’s because the queue is long. If something hasn’t come out, it’s because there’s a glitch in the matrix (we are open to reminders, in fact please remind us).
At the heart of it all, treating and curing Rett syndrome is every bit as important to us as it is to you.
We strongly believe that we will only be heard when we start to shout together, and our hope is to be a vehicle to enable that. We want to stand up and change the world, we can only achieve that as a group, as an army, and Army of Us.