Some just 'get' her

It is really nice when people 'get' Evan. To see that she's not 'special' because she isn't 'normal' but that she is special just because she is...

This note says it all.  It was given to Evan on the last day of her art class, which was run by a lovely 18 year old girl and her mum.  It reads:

"Evan... What an amazing little girl you are, and it has been our utter pleasure getting to know you here at Ripley Art Classes. May your unique spirit and gentle nature carry you far."

This makes me cry every time I read it.

Tic tock can't turn back the clock

I've never really talked about Evan's tics in a public way before. This was because I didn't want people to give me any sympathy and more importantly I didn't want anyone to feel sorry for me.

It is mad even as I write this I think, this isn't about me is it, this is about Evan having to live with having tics? When they started though, of the three of us, Jim, Evan and I, it appeared that I was the only one that was distressed about them.

They officially started back in August 2012.  I say officially because with hindsight we believe there were less obvious things going on before then.  Up until then it had been a fun year and this was evidenced by all the amazing pictures on the photo-stream on our tv.  A photo stream that for a few months became my nightmare.

The first thing that we noticed was that every few steps she would squat down.  The day she went back to school she started jerking her head back.  The day after she was squatting and jerking her head back at the same time and then on day three she added a sound with an extra few head jerks thrown in.

The worse thing for me was that there was an odd look in her eyes.  Maybe it was the head jerking causing them to look odd but it was like she wasn't my little girl any more.  Every time I saw those damn photos streaming all I wanted to do was turn back the clock and get my little girl back again.  The only time I wasn't crying was when she was with me.  The moment she was away from me the tears would start falling again.

Then one day I thought this has got to stop and I contacted a wonderful hypnotherapy friend of mine Tracy Jones and asked her to help me.  We had a telephone conversation during which I spent most of the time crying and saying to poor Tracy "yes I know, but I still feel bad".  None of the usual stuff was helping.  Then she said I'm going to turn one of your favourite techniques on you, it is a Sedona method technique and she simply asked "are you going to feel like this forever?"  That's actually all she had to ask because it stopped me in my tracks, the obvious answer of 'NO' took away the intensity of the feelings.

It didn't immediately take away my fear and my worry but it did stop the tears.  It is always nicer when Evan's in a period of no tics but I have at last got to the point where my heart doesn't pound with dread when they start.

At the moment she says 'yes' whilst pulling her arm down in a celebratory fashion.  Most of the time she adapts it to make it look like she is doing just that, celebrating something.  But the other day I asked her a question and she said "yes" and then went "no, no, wait hold on a minute", she was so comical trying to backtrack from her yes it made me laugh.  It was good to find the humour in the situation.

I no longer wish I could turn back the clock because I've realised that Evan is still my funny, quirky, nutty little thing she has always been.

Making sense of it all.

As I have just started this blog I think it will be useful to share with you a bit more about Evan.

As I said previously she is an amazing little girl but this is something I am sure we would all say about our children, and of course we are all right.  There is no getting away from it, and I wouldn't want to, she is different and here are some of the reasons as to why.

Evan is still awaiting a formal diagnosis from a medical perspective.  It is a process that we started in October 2012 and in March 2013 we were told that it would take a further 12-18 months due to NHS shortages.  To date we've not been told anything further.

However, we took her to see a private Occupational Therapist (OT) in July 2012 and Evan has been seeing her monthly ever since.  The OT has ascertained that Evan has Sensory Processing Disorder (SPD).

In very simple terms this means that Evan's central nervous system (CNS) doesn't compute her internal and external stimuli in the same way as the CNS of 'ordinary' people.  The interesting thing for me as I work with Evan and the OT is that  a lot of my 'problems', particularly growing up, are now too starting to make sense.  I haven't been formally assessed but I am sure that I too have SPD.

SPD can come in all sorts of shapes, sizes and levels of severity but unfortunately this can lead to an assumption that she has Autistic Spectrum Disorder (ASD) as this is something that very much affects individuals with autism.  I am not afraid of her having a diagnosis of ASD but should it occur I want to make sure it is the right one.  From information I am gathering at this stage I do not believe it would be.  That remains to be seen and there are people campaigning to have SPD recognised in its own right as a diagnosis (currently it is not) so by the time the NHS find some people to assess her who knows where we will be.

Evan has difficulty processing 4 out of 6 different sensory channels.  In particular her CNS has problems understanding the sensory information from her body, in the form of movement, body positions and tactile information from the skin.  For Evan practically it means that she has difficulty knowing where her body is in space and also that without movement has difficulty paying attention and concentrating.  She also has considerable difficulty regulating the tone in her body over time, which means she can't sit still in an upright position without support for any length of time.   She therefore seeks out movement that will disrupt with any situation that requires her to be still for long periods such as during assembly or classes in school.

In addition information she hears is harder to process and therefore she relies on her visual system to 'learn'.  She also can't filter out sounds in the way that most people do so she will notice the sound of traffic outside her class window, the hum of the computer, kids moving along the corridor, etc.  If she encounters too many different sensory channels in one go she gets frustrated and confused and this affects her emotional responses and behaviour.

She is also sensory seeking causing her to have an unusual need to touch things and people in order to 'understand' them.  Unfortunately, though she will often find it overwhelming if somebody touches her when she is not expecting it and will react negatively.  To her CNS in fact she has just been delivered a massive shock.  This can be seen as double standards, although for her CNS two very different things are occurring.

We also had her assessed by an Educational Psychologist, on request by the school, to help them structure her learning (it would appear that the only way to get anything done is to keep paying yourself) and her findings were not much different to what the OT had reported.  We did also learn that she may have dyslexia but she's a bit young to diagnose that so it is watch this space on that one for a while.  The Educational Psychologist did however repeatedly point out throughout her report, that not only is Evan one of the youngest in her year that she is also very tall and due to her high level of intelligence (the Psychologist's words not mine ;-)) that too higher expectations can be laid on her.  I will repeat that she said this many, many times.  I think that is telling.

So to summarise:

• Evan needs to keep moving in a culture that expects children to be still. 
• She hears things that most are not even aware of and people can't understand when she says that her environment is too noisy.  
• She has to touch in order to understand which of course can be irritating to others but she gets told off for overreacting when others touch her and is accused of double standards.
• She gets more tired in 15 minutes of just sitting at a table than an average child does in an hour.
• Whilst she needs movement to learn too much activity creates chaos for her.
• When there is a lot of stimuli, for example, the simple act of 15 children going to wash their hand before lunch, after she's just had to sit still in a classroom for 20 minutes, she feels like her world has gone mad.

I hope this gives you a flavour of what life is like for Evan and helps you to understand that there can be so much going on within a child that we just don't see and that outwardly can be misconstrued as 'bad behaviour'.

I'm not saying she's never naughty because she is a normal 6 year old child.  My aim however with this blog is to encourage people to stop and  think and wonder, what else might be going on?

Today is the day!

Although this is my first actual post for this blog I've composed many in my head over the last few years but today, for some reason, I have been driven to finally set it up.

I don't know what is different about today, it is the same as any other day but something in me has had enough of the procrastination and it is forcing me to type.  There is a sense of urgency about it that I cannot explain, almost like there is too much inside me now about this topic and it is time to get it out.

I want to share with you what it is like to be the mum of a child that doesn't 'fit in the box'. I like that she doesn't, Evan is the most wonderful, if not exhausting child I could hope to be the mother of, but not fitting in the box comes with its complications, its frustrations, even fears and very often being judged (both Evan and me as her mum).

This blog won't be written in chronological order, because that would take too much energy for me to organise, but as I experience or remember things that I want to share I will put them down, and hopefully by sharing my journey it may help other mums in a similar position.