Tired

I’m tired.

Not just through lack of sleep, but tired from trying to stay positive, trying to fight for everything Tilly needs, to keep a track of her development and where the gaps are.  I’m tired of fighting for everything, of feeling like I’m the only person who wants to keep pushing and trying all we can to help her progress.

I’m tired of putting on my tunnel vision glasses each time I go to school to drop Tilly off or pick her up, and focus entirely on her so that the sight of all the other mainstream children doing what comes so naturally and easily to them doesn’t upset me.

I’m tired of pushing away all the negative thoughts about her and her future.

I’m tired of trying to work out what she wants and needs when she can’t tell me.  Of having to carry her more frequently because her walking has really slowed down (the ankle splint she is supposed to wear is too small, and the Orthotics department can’t see her to begin the process for a new one until June).

I’m tired of trying to focus on my life outside of Tilly, and of feeling guilty for doing that.

I’m tired of feeling pangs of guilt when I spend time with Elliot, who needs less and less support, and enjoying watching him grow into a polite, smart and funny wee man.

I’m tired of this journey right now, and wish someone could tell me its going to get easier.

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Fear

Whilst I was struggling at 3am this morning to save Tilly from her hysterical giggling fit, I was hit by a very strong emotion – fear. Or, more specifically – fear of her future.

Tilly has always been a fantastic sleeper and, on the whole, she still is.  But around a year and a half ago, she began struggling to get herself into a deep sleep – she didn’t cry, but did seek sensory input that would help get her there (rubbing her hair, humming, banging the side of her bed).  As time went on, it became an even bigger struggle for her and, last year, we decided to step in and give her medication to help her body do what it should be doing naturally, i.e. producing melatonin, the sleep hormone we all produce to send us into sleepy land.  It mostly worked well but there were times when she would wake during the night and giggle hysterically.  At first we thought she had been dreaming and we found it quite amusing – what amazing dreams she must be having!  But it didn’t take long to realise that she wasn’t in a very happy place during these giggling fits.  And even though we tried different tactics, we just couldn’t get her to stop laughing or to engage with us.  She also couldn’t keep still, and fidgeted constantly.

She had one of these full on giggling fits last night – and it lasted about 4 hours.  Probably the longest one yet.

So, during those 4 hours of what I can only describe as desperation, I had the most overwhelming feeling of fear that has thrown me off balance today – and has resulted in me writing this post.

Fear of how her mind will develop; if her sensory issues will overwhelm her and prevent her from living a happy life; who’ll look after her when I’m not around; who’ll understand her and her needs; where she’ll live; if she’ll have friendships; if she’ll be able to be involved in choosing how she lives her life.  You get the picture.  All the questions about her future I normally push away as soon as they threaten to make an appearance, were right there in neon lights in the early hours of this morning.

Now that its daylight, and Tilly is herself again, those questions are easier to block out.  But it does leave me wondering if I should be starting to address them now.  You know, plan for her future.

I’ve been thinking about it all morning and the only answer I can come up with is “how the hell would I do that?” What she does developmentally from one month to the next changes so how can we plan for her future? We don’t know what she’ll be capable of doing.  She surprises me all the time – sometimes in a negative way, but more often than not, she does it in a positive way.

No, I’m going to try to write last night off as another blip on her horizon that created a whirlwind of madness in my own, sleep deprived mind.

And instead I’m going to get my positive and productive hat back on to address the immediate concerns – what is causing her to have those giggling fits in the first place?  Is it related to constipation, or is it neurological?

Time to do what I do best and research.  Not sit here and worry about the future.  The life we’re living today is too precious for that.

Tilly’s too precious for that.

The Gemiini Approach

I was sitting on the flight home reading about mindfulness in a magazine – a way of meditating and bringing yourself back into the moment – when my mind began to wander. The exact reason that I would be appalling at practicing mindfulness – I couldn’t even stay focussed on an article, never mind perform a bit of meditation 15 minutes a day!!  I’m the person during the relaxation part of a yoga class who fidgets, sighs and can’t wait for it to be over.  But as a friend of mine recently wrote in her blog entitled “Why I’ll take ‘winefulness’ over mindfulness any day.”, my preferred escape from reality and my way to destress is to see my friends and laugh or talk it out. And yes, quite often there’s wine involved.

Sorry, I digress!  So, back to my flight home.  My mind wandered to thinking about Tilly and the Gemiini seminar I had just attended in London that day. It was a fantastic session, so interesting, inspiring and informative, and undoubtedly worth the trip down there. Laura (Kasbar – the founder of Gemiini) mainly talked about children who were using the program who either had Autism or Down Syndrome.  Initially, I felt myself panic that, once again, we were going to fall into that ‘rare genetic condition’ hole; that this seminar wouldn’t be relevant and we’d be back out on that lonely limb with nobody able to help.  But as Laura started to talk, I was able to relate so much of it to Tilly and how she functions.  We were presented with research on why and how Gemiini (which is a form of discrete video modelling) works.  It was fascinating.  In very (VERY) simple terms, our brains have 2 sides – an active network and a default network.  When we’re in a dreamy state, we’re using the default network and our active side isn’t switched on – think about if you’re daydreaming and someone tries to talk to you.  All you probably hear is noise in the background but your brain isn’t actually listening to the words.  You need to snap out of the daydream to come back to reality and hear what that person is saying to you.  Children like Tilly spend a lot of time using their default network and what discrete video modelling does, is it maintains the child’s focus so they’re always using their active network.  And by using repetition (they suggest a child watches each video around 40 times), the neural pathways in the brain will start to form, resulting in the child learning and retaining new words.

It’s all so fascinating, and my attempt to explain the science behind it probably doesn’t do it justice, so apologies to anyone reading this who has a bit more insight into the scientific bit!

As Tilly’s diagnosis is so rare, Laura wasn’t able to tell me that Gemiini would help Tilly to speak.  She couldn’t give me the guarantee that this would be the answer to all our prayers. But, if truth be told, she probably wouldn’t have gained my trust in Gemiini (a service we have to pay for)  if she had given that promise  without even having met my daughter. What she did tell me was that it would very likely improve Tilly’s receptive language – by that I mean her understanding of what we say to her – and improve her chances of using a communication device, e.g. via an iPad, in the future. Presently, Tilly’s receptive language is poor for a child of age 6 but we have all (family and school) noticed it improve in recent weeks, or even months. What the seminar highlighted was that some of the most recent progress has more than likely been as a result of the Gemiini program, without us even realising it. I’ve not had a very organised and methodical approach to the system so far – I think that one of the negatives against Gemiini is that there are so many success stories that when a new user begins the videos, they expect to put the videos on and watch a miracle happen. I am definitely in that camp! But what I should have been doing was note down every new behaviour, expression, understanding of receptive language, gross or fine motor skill improvement. Evidence has proven that all of these things improve as a result of a child dong the Gemiini program.

One thing that I suddenly realised during the seminar was that Tilly has recently enjoyed using scissors to do simple cutting in her classroom. She’s never been interested in doing this before.  I’m not sure about timings but I’m pretty sure it coincides with her starting the Gemiini program. She has made gains in other areas too – her eye contact has improved, it’s been reported from her (fabulous, amazing, wonderful!!!) 1-1 at school that she is suddenly very interested in what the other (neuro-typical) children in her class are doing. I have also observed that her receptive language at home is improving.

I now have some more relevant information on why Gemiini works and what it does to a child on a neurological level. And I have to be honest….I’m more excited about this than I have been for any other therapy we’ve tried. In the 5 or 6 weeks we’ve been (somewhat lackadaisically) doing Gemiini, we’ve only scratched the surface of what it can do. It’s so new and the system is continually being improved that I’m excited to be a part of it. It might not mean that Tilly will be able to talk but if we’re able to help her progress in other ways – and with access to hours & hours of therapy we don’t get from the NHS – that is just magnificent.