I define me.

McKenna ready for her prom

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.

Hair pulling

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.

Abigail when she was pulling her hair out, and then again later when it was growing back.

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.

Hair styling

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.
hair-bunDon’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.

Joy getting a haircut, this blog was inspired by her.

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

Mckenna the morning after the prom.

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.

Tangle Teezer –
Knot Genie –

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.

Plan ahead.

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.

Brooklyn with a hair pretty.

Hair Pretties.

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.

I define me Album – click here.

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