How to be a mind reader

fullsizerender.jpgWho is this ‘not-so’ little girl in front of me?

She’s Tilly of course, my daughter, but who is she?  What goes on in that complicated brain of hers?  When she isn’t ‘present’ in our world, where does her mind go?  What does she think about?  She can’t speak, but does she have an internal commentary, a silent dialogue with herself, that I’m not party to?  Is she able to create words in her head, but unable to vocalize them?

How does she feel when she sits in the bath, her favourite activity, splashing the water?  Is she trying to create more bubbles, or is she simply fascinated with the way the water moves?  How it looks as it changes when it’s splashed on the side of the bath, or on her skin, or thrown over the side?

I’d love to know what goes on in her head when I play certain music to her – songs that are slow and melodic, the type that help to ease stress.  Does she find them as relaxing as I do?  She can become so absorbed in them that she looks into the distance and, other than the occasional twitch of her fingers or toes, looks entranced and utterly relaxed.  Does she feel the intended effect of the music, or is this one of those episodes when she’s drifted off into her own little world, unaware of the music or her surroundings?

When her brother plays with her and looks her in the eye to tell her or ask her something, is there a part of her that wishes she had the ability to answer his question or to tell him something about their game or their day?  Does she feel sad that she can’t have a reciprocal conversation with him?

Does Tilly feel the frustration (I think) I see in her when she attempts to play a game, such as a jigsaw, and can’t put the pieces together?  Or am I projecting my own frustration on her?  The smile on her face and the eye contact she makes when she succeeds at something tells me that she shares my joy of her success.  But does that work the other way?  Does she understand when she is unable to do something or does she just move onto the next activity without giving the first a second thought?

I’m asking myself these questions because today, rather than jump out of the car when Tilly & I arrived home from school, we sat for a few minutes listening to the music I was playing (Holocene by Bon Iver and Wait by M83 for anyone who is interested).  I watched her.  Then when I put her into the bath, I didn’t walk into her bedroom to tidy up and listen to her splashing from a distance.  I watched her.

As I’m sure so many of us are guilty of,  I spend too much time just ‘doing’, without actually stopping for a moment to look at the here and now.  Mindfulness I believe it’s called – something I’ve tried several times and failed at!!

But our children are growing up so fast, and there is so much I’m not really ‘taking in’.

For her brother, it’s about enjoying the innocence he still has and listening to the stories from his wild imagination, or hearing him talk to his cars and toys as if he’s recording his own ‘YouTube’ video.

For Tilly, its about learning more about who she is rather than seeing her as my daughter with the additional needs that I need to fight and campaign for.  She is a person, with a wonderful little personality, but there is so much more that I can learn about her if I just stop and watch her more often.

Here’s to more watching and listening, and less running around and doing!

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It’s sometimes a difficult journey

I’m the mum of a child with special needs, and I struggle with depression.

It’s not easy to admit that, but to be honest, I’m tired of hiding it.  Because truth be told, it’s exhausting; I’m 8 years into this journey and though I have had many good times, and try to remain positive, I have also had plenty of bad times which leave me struggling to get up in the morning and face the day.

I’m currently going through a low period, so I thought it would be a good time to write an open and honest post about why I’m struggling, in the hope that it will help clear the dark clouds hovering over me, and so that it can perhaps help others to talk about their feelings too.

Firstly, I don’t want you to think that I’m depressed because I have a daughter with special needs.  I accepted that a long time ago, and feel thankful that I have such a special bond with my strong, beautiful and courageous little girl.  Nor am I depressed because this life isn’t the one I thought (pre-children) that I’d be living.

I believe that I’m depressed because I’m actually emotionally and physically knackered! Don’t get me wrong, I know that parenting in itself has that affect on almost every parent or carer out there.  But there is a big difference between my parenting experience for Elliot and for Tilly.  It’s not only that she is harder work because she still wears nappies; needs help to get in/out of the bath/car/bed; can’t communicate her needs and wants easily; and needs constant supervision.  It’s that I rarely get a chance to have a sustained period of not thinking about the next battle I have to fight for her….or the next appointment or meeting I have to attend to discuss her…or the next report I have to read…or the next form I have to complete…or researching the latest therapy we should try.

It’s the things that draw you into an internal battle between your emotions and your duties to be your child’s advocate – a constant pushing and pulling scenario that, after several weeks of the same, can leave you rather broken.

That has been life for the last few months.  A lot of the enjoyment from being Tilly’s mum has been removed, or at least bruised, because I’ve had so many of these battles to deal with.  I’ve been struggling to find the energy to pull myself up, shake myself off and enjoy my journey with Tilly.”

I wrote this a couple of months ago when I was having a tough time.  But I didn’t finish it, and didn’t feel ready to publish it.

But having reread it, I’m reminded of how difficult life on this journey can sometimes be.  And I do want to share it now.  Because it’s not always that difficult.

Right now, it’s not all that bad (touches her wooden table for luck).  We’ve had a lovely Christmas break, Tilly and her brother have been playing together more than ever, she’s been going through a fun (but mischevious!!!) stage, and many of the fights I had to embark on have been won…more will follow on that soon.

I’m at a stage in our life where I’ve started to focus on myself a bit more.  I’m enjoying fitness again, which was always a big part of my life and is a great tool for helping me deal with depression, but was put on hold when Tilly was born.  I’m also not having to attend meetings and appointments several times a week and actually have some free time.  So I’ve taken the plunge and have signed up to study for 6 months in preparation for my grand entrance to the world of employment again.

There will be tough times and battles to be won again – life has a funny way of throwing the bad stuff at you – but the longer this journey goes on, the more armour and ammunition I am building up so that the battles will be easier to fight.

 

 

 

 

 

 

 

 

 

 

My post A-Day wobble

Damn you, you so called ‘autism experts’.  Damn you for making me wobble and look at my precious daughter through those eyes again.

Those eyes I looked through years ago when our little girl was being analysed and tested for so many scary things.  The eyes that delayed me connecting with my own flesh and blood, from creating that special mother and daughter bond.

The eyes that made me question every movement, look, sound or twitch she made, wondering if it was ‘normal’.  The eyes that searched google morning, noon and night in the hope that I would be the one to find the answer so that I no longer had to subject her to daunting hospital appointments and horrible tests.

With the help of my wonderful Crossreach counsellor, the eyes I worked so hard to switch off and replace with the loving, true eyes I now see her through.  Until A-Day.

You almost did it.  You almost switched them on again – they have been flickering on and off since that day, but I have made sense of it all.

She is still the same beautiful girl she was before.  She doesn’t just see me as a tool to get what she wants, she sees me as her mum – and I know she feels as much love for me as I do her.  She understands our relationship, in fact, she understands her relationship with all the key people in her life.  The way she ran to her Aunty Sally and gave her a massive cuddle when she walked through the door today.  The way she lights up when her brother is in the room.  She connects with people in the same amazing way today as she did before A-Day.

I almost let it happen, but this diagnosis isn’t going to change anything.  It’s given us a little more ammunition and a massive amount of fighting spirit to get what is best for her, but she’s still our beautiful, happy and wonderful Tilly.

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A-Day

My name is Michelle, and my daughter is autistic.

Now that’s a phrase that I hoped that I would never have to say.  But after a 3 hour appointment this afternoon, where my daughter was observed and analysed by 2 people who had never met her before, that is exactly what I’ve been told is the case.

“We can tell you that after observing her this afternoon, she does indeed meet all the criteria for us to give her an ‘Autism Spectrum Diagnosis’.  Now, get on your way.”

Or at least, that’s my interpretation of how our meeting went.

In one fell swoop, they took away all hope and positivity I had about my daughter’s future.  The delight I’ve been taking in her relatively recent ability to communicate her needs to me and others by taking us to what she wants has been diminished to an autistic trait.  “She is merely using you as a tool to get what she wants – you are not a person to her, she is taking you to what she wants but not using any of the skills we’d expect to see from typical children such as pointing or making eye contact to communicate her needs.”  So you’re telling me that the mini-celebrations I’ve been having about Tilly making it clearer about what she wants is actually a trait of autism, and that I shouldn’t be rejoicing that her development is progressing?

“And now what?  What are the next steps?”.  I ask.

“Well, nothing.  You are already getting the services she will need so there is nothing more we can do.”

And there it is.  My fear of what might happen if today’s outcome was that Tilly did indeed have autism.  The grand total of nothing.  The pathetic 6 week block of speech therapy (if we’re lucky) we get already will remain that.  The ridiculous input and support from Occupational Therapy will remain just that.  The educational support she gets will remain the same.  She may be able to access the ‘specialist communication provision’ that is on our doorstep – but there is no guarantee as spaces are limited.

We’ve got yet another label, another issue to deal with but with absolutely no support whatsoever.  Why?  Why is this acceptable?

In the words of the paediatrician who saw her today, her communication issues are preventing her from learning – but as there is nothing in place to address this, how will learning ever improve?  We’ve been given a mind-blowing diagnosis and set on our way.  Our 8-year old daughter has had issue after issue to deal with since she was born, and still, we are having to fight our way through whatever bloody system is in place to get support that will help her.

It’s only been a few hours since her diagnosis but after a good chat over a bottle of wine with our wonderful friend who works with Tilly, we are already preparing ourselves for battle.  If nobody is going to fight her cause for us, then we will have to prepare our armoury and go in all guns blazing to get the support and education she should be entitled to, and very much deserves.

So I will continue to celebrate all the things Tilly achieves and the progress she makes, not because of her new label but in-spite of it.  When she looks me in the eye and smiles or gives me a cuddle because she wants to hold her mummy I will continue to be proud because regardless of all the obstacles she faces; she continues to fight and move forward, unaware of her labels.  And because she is so utterly incredible we will fight tooth and nail all we can for her, to get all the help and support she needs and deserves.

Here we go again….

 

Why you shouldn’t feel sorry for me

I’ve noticed recently that the response I’ve received when I’ve told anyone about Tilly’s genetic condition and her resulting ‘special’ needs, has been a sympathetic one.  Generally, something along the lines of “oh, I’m really sorry to hear that.”

I want to write a post to ask you , please, don’t feel sorry for us.  Please feel happy and delighted that we have been gifted with the most wonderful, loving, strong-willed, brave and beautiful little girl.  Just in the way that you’d respond if I told you about Elliot, Tilly’s ‘neurotypical’ little brother.

Don’t get me wrong, it has been a more difficult journey in so many ways than the one we’re going through with Elliot, and at times I have really struggled, with many tears and tantrums to get myself through it.  The journey will continue to throw obstacles in our way, with battles to be won, difficult decisions to be made – but these obstacles are mainly a result of the system we are forced to deal with.  It doesn’t change who Tilly is, and doesn’t change how we all feel about her.

For a little girl who is unable to talk, she brings love and joy to so many people.  And none of those people feel sorry for her – they love her for who she is, appreciating and rejoicing in every little step she makes in her development (of which there are many at the moment!). When those sparkly eyes of hers connect with yours, it is such a special moment.  She is able to communicate with you on a level you didn’t even know existed.

So, please, don’t feel you need to say sorry.  Instead, ask me about her – she’s one of my favourite subjects so I’ll happily tell you all about her.  Alongside her little brother Elliot, she is the most special and wonderful human being I have ever met.

If you’re lucky, maybe one day you’ll meet her and be able to enjoy some of the Tilly magic too.

 

 

Why I’m returning to blogging

Hello, it’s me, Tilly’s mum.

You’ve not heard from me for a while.  I’m sorry for the silence.

I’ve tried to write to you before now, but each time I start, something happens – a little person demands my attention, I get distracted by a phone call, I have to put the laptop down to hang washing up, or sometimes I just can’t write.  I start, but the words don’t flow.  Actually, that is the main problem.  I have writer’s block.

But I think I know why I’ve been having trouble putting (virtual) pen to (virtual) paper.

I joined some ‘blogging’ Facebook groups a couple of months ago, and rather than inspire me to write more, they’ve had the opposite effect.  I read post after post about linky’s, post reach, affiliated links, bloggers being paid, statistics for this, statistics for that – and I got the fear.  I felt out of my depth, lost my way and completely lost my desire to write.

What I’ve realised now as I’m writing this, is that I had forgotten why I started my blog in the first place.  It wasn’t to watch the likes and shares on the statistics rise in numbers, it wasn’t to reach the masses.  It was to share my thoughts and experiences with those who were interested and could learn, or teach me, something from them.  It was also a way to decipher my thoughts and worries – the process of writing somehow provides me with a technique for self-therapy.

So why am I writing now?  What has changed?

Two things have happened recently that have made me re-evaluate my blogging (non-) existence:

  1.  I was surprised to find my name listed on the nominations for 2 different awards for the upcoming BAPS Awards (blogging awards for us Special Needs bloggers/parents).  I’ve no idea how I got on there (thank you if you happen to be reading this), but it has prompted me to think about why I’ve not been blogging and what has been standing in my way.  It has also given me a little lift in my confidence – perhaps there is someone out there who has read something on my blog that has resonated with them, or helped them, or they may have simply enjoyed reading one of my posts.  It was reason enough for them to nominate me and that is such a lovely feeling.
  2. I’ve been struggling a little with depression.  Unfortunately it’s a condition (a side effect of our circumstances even) that many parents like me have to deal with during our journeys with our children.  On a daily basis, I experience a myriad of emotions – I can be brimming with positivity about how well Tilly is doing one minute, then before I know it, I can suddenly become overwhelmed with sadness and fear about her future.  Add to that the fights we have to undertake in order to get answers/decisions/support; the appointments and meetings we have to arrange, attend and follow up on; the struggle to find the time and energy to manage a home, family and job (though not me…I’ve not figured that part out yet!); the therapies and help we provide our children.   It doesn’t take long for it all to become too much to handle.

After some analysis (well, a coffee and a quiet moment to myself), I had a light bulb moment.  Perhaps there is a correlation between my depression and writing my blog!  I’ve not written anything for 2 months…..and I’ve been feeling low for around, em, 2 months.

So, you lucky readers, expect more ramblings from me in the coming weeks.  This is a particularly selfish and self-indulgent post which I promise won’t reappear.  I will get back to writing about my beautiful daughter Tilly – and believe me, there is a lot to catch up on!

Hopefully you’ll stay with me and continue sharing this journey with us.  But if you don’t, that’s OK.  I’m not about the numbers – I’m about you gaining something (anything) valuable from my thoughts.

xx

Why I’m giving up on our family tradition

So for the last 3 years, I’ve put a lot of effort into doing a sensory advent calendar with Tilly.  Partly because she didn’t really understand the excitement and anticipation of a chocolate advent calendar – in fact, she was never really interested in chocolate – so it was my way of giving her something each day that she would enjoy, and perhaps a way to anticipate and enjoy (in a small way) the build up to Christmas other neurotypical children do.

I’m not going to pretend, it’s hard work planning, organising and delivering the calendar.  I mean, 24 days of (mostly) messy activities that I have to source materials for, or make, then set up and encourage Tilly and her brother to participate in.  Then there’s the general chaos and mess that follows.  I quite like a tidy and non-chaotic house so it’s a struggle for me!

An example of what we used to do was a large tray filled with peppermint scented and red-coloured rice with tubs to pour the rice in and out of; a bath filled with a jelly-like substance that I ‘forced’ the kids to sit in and ‘enjoy’; a lightbox with Christmas themed sticky decorations; and tubs of home-made peppermint scented cloud dough to feel, mould and generally throw all over the floor.  Phew, I feel exhausted just looking at that list, never mind everything else I had planned for the 24 days!

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I found it pretty difficult to fulfil last year because Tilly was at school full-time and very tired when she came home – it was a struggle to fit it in at a time where she was alert enough to engage with me. We tried, but it did slip and certainly wasn’t on the same scale as the previous 2 years.

In November this year, I had every intention to do an amazing sensory advent calendar and blog about it.  I’d set up exciting new activities, take cool Instagram photos and write a blog post each day.

We’re now at the end of 2nd December and what have I done?  Nothing!  I’ve thought about it, have felt guilty about it – but I’ve done hee-haw about it.  I’ve seen numerous ‘elf on the shelf’ posts and to be completely honest, all I’ve thought is ‘how can they be bothered?’.  My heart just isn’t in it this year!

Does that make me a bad mum?  At first I thought that yes, I’m failing, I’ve done it before, I should do it again.

But you know what, Tilly isn’t bothered.  She’s grown into a feisty little girl who is living life on her own agenda and is happy to try and communicate what she wants and needs (even if that does mean via loud moaning and whinging).  Her brother is almost 5 and not so interested in the ‘sensory activities’ we used to do.  He’d rather build hot wheels track and watch Top Gear!  Oh, and open his chocolate advent calendar.

Which brings me to today’s events.  I always buy Tilly a choccy advent calendar but she’s never been bothered about it.  Until today!  We opened the number 2  door and she devoured the chocolate and went looking for more.  In exactly the same way her brother has.  She’s not allowed it, she has to understand that it’s one a day – so with some persistence, who knows, by 24 December, she might understand the concept!

choccy-calendar

If I’m honest, at some point in every single day of Tilly’s life, I throw a bit of a sensory activity into her day.  She loves it, needs it and enjoys it.  I don’t document it, don’t take photos of it, or write about it so why should I give myself , or Tilly for that matter, the pressure of doing that during the already busy month that is December?

No, I’ve decided that from this point forward, the’ Scott family sensory advent calendar’ will be replaced with the ‘let’s enjoy the festive period spontaneously and without expectation’ approach.

I’m not going to pretend that I might bore you with some photos (Instagram even!) and blog posts but don’t be expecting them every day.  If we fancy a day off, we’ll have one.

And hopefully, that choccy advent calendar will become Tilly’s countdown to Christmas.