A road less travelled

I’m not sure why now, after being on this special needs journey for close to 7 years, I have chosen to write a blog.  Maybe because this journey that I’m on, this unexpected path of twists and turns, has become such a big part of who I am. A part of me I don’t really fully understand, never mind anyone else.

I was about to write a brief history of my journey from being pregnant with Tilly until now – but realised after writing one sentence that to make it ‘brief’ would be an impossible task.  Perhaps in weeks to come, I’ll try to remember some of our experiences from the last 6 and a half years and write about them.  I’m not sure what the benefit of that would be but who knows, maybe it’ll be therapy for me.  And god knows I need it (but don’t we all in some small way?).

So, I’m sitting down this morning to write because I’ve got a lot of sadness, frustration and anger clouding the sunny spells I try so hard to focus on and enjoy.  But I can’t seem to blow those clouds away.

I’m in a funny situation with my children because on the one hand I have this neuro-typical, loud, smart and funny little boy who I love watching grow and learn every day.  I’m in awe of how his little brain can soak up and retain so much information in such a short period of time.  He makes me laugh and smile with his funny little stories, his crazy imagination, his desire to engage in conversation with me.  His love of his friends, the new skills he is developing each week, his confidence in becoming more and more independent. His voice….his beautiful, sweet voice. His loud and sometimes, non-stop voice!!

Then I have my daughter.  My Tilly.  My world.  She has many, many wonderful qualities.  Her beautiful smile, her infectious laugh, her cuddles.  The strength that little girl has shown to overcome so many hurdles in her 6 years on this earth is nothing short of amazing.

But…I hate that I have to write that word, but there is a but.  She isn’t on a typical journey.  Her brain isn’t wired the same way as her brother’s.  We don’t really know how it’s wired, or how it will be in years to come.  She doesn’t approach life or the world around her in the same way that the rest of us do.  And because she’s locked in a very silent world, trying to make sense of her world is really, really bloody tough.  Its not just that she can’t talk, the sensory input she gets from visual, auditory, tactile, vestibular (where her body is in space), proprioceptive (what her body feels from the world around her), is different to what we feel, and take for granted. Her brain doesn’t process sensory input in the same way that ours does.  It affects how she interacts with people, approaches the environment – in fact everything that she can hear, see, touch, feel.

As her mum, her carer, her therapist, it’s my job to help her not only cope with each day, but to find ways to make it easier for her, to teach her how to grow, how to develop.  It may not always look like I’m ‘doing much’ but my head can never, ever switch off to what she is or isn’t doing, what else I could be doing or how else I could help her. I am always hyper-aware of her state of mind, what sensory input she is getting, how she looks like she is managing it so that I can jump in and make a change if I need to – or if something upsets her later, or she doesn’t eat, can’t sleep etc, I have a good chance of problem solving what went wrong  and sorting it out for her.  In the absence of any words or signs from her, I have to – that’s my job.

We’ve just signed up to a new form of therapy – it’s based on discrete video modelling.  As I’ve touched on already, our neuro- typical brains are capable of stripping out sensory input that isn’t important to focus on what is.  For example, if someone is talking to you, your brain can pare down the unimportant stuff like the flickering of a light, the sound of air conditioning, the sounds and images of everything around you to focus on the voice talking to you.  For Tilly, this paring down of information isn’t automatic.  So through discrete video modelling, only the specific bit of information is presented to her.

In simple terms, with this new therapy, we play the same stripped down video of 4 words being said over and over to Tilly 3 times a day for 20 minutes each session.  Apparently repitition is key.

I have read some amazing success stories from this form of therapy – but as I’m discovering with all new forms of therapy we try, this leads to another unexpected emotional journey.  You start with the initial excitement and buzz that “YES!!! This could be it, this could be the answer!!”. Then after a week of only very subtle progress (I’m sure she just said raaarrrr when I asked what a bear says???!! Or maybe it was coincidence because she didn’t do it again), your positivity starts to fade again.  You keep going but question if you’re setting her up for failure, if you’re pushing for something that might never happen.  You wish somebody, somewhere could tell you what to do.

And I guess that’s the reason for this blog.  To share what our life is like for those who don’t really understand.  What life is like being Tilly’s mum – it’s nothing that any medical service has ever, or will be able to help with. There’s no leaflet or web page, or specialist out there we can refer to.  We have to work it out ourselves.  A road less travelled.