Pu-dding

I notice your eyes and your beautiful smile.

They are for me.  You have made perfect eye contact.

You look at my mouth, still smiling.

You wait in anticipation because you know I know what you want.

I say the word. Pu-dding.

You look at me and smile because you know I know that’s what you want.

I will you to make the small movements of your mouth.

To form the ‘pu’ then the ‘dding’.

I see you watch me.  I see you watch the movements my mouth can make.

Your mouth moves.  Are you going to do it?

A part of me begins to surge with excitement, a glimmer of hope.

I say it again.  Pu-dding.

Your smile fades.

You become agitated. You wriggle in your chair.  You want down.

You’re frustrated because you know I know what you want but I’ve not given it to you yet.

You know I want you to say it.  But you can’t.

You can’t say the word. ‘Pudding’. Or ‘Mummy’.  Or ‘Daddy’. Or ‘I love you’.

Maybe tomorrow.  There is always tomorrow.

 

 

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Respite

As much as I love spending time with my girl, I’d be lying if I didn’t say she was hard work.  The bigger she gets, the more development steps she makes, the more confident she becomes naturally equates to a very happy and proud mum – but also a more physically and mentally exhausted mum.  Especially during the summer holidays.  The long summer holidays!!!

Those of you lucky enough to have children will remember/be experiencing/be getting ready to go through the toddler stage where those troublesome tots have to be watched every minute of the day.  If they’re not, they can get into all sorts of bother – think of all the photos shared on Facebook of kids (and entire rooms) smothered in Sudocreme, or standing amongst the debris of a smashed plate/ornament/cup.  Or pulling every baby wipe out of it’s packet; or putting stones from the garden in their mouths; or dangling mummy’s bra (or as Tilly’s brother calls it, “Mummy’s boobies”) down the toilet that the other child in the house has just done a wee in.  Or throwing things (a precious framed wedding photo for example) down the stairs because they want your attention.  Or figuring out how to open the front door and taking themselves out for a walk to the pavement, and almost onto the road.  Or throwing a glass lamp on the ground and smashing it.

You get the picture – toddlers can be hard work!!

Well, we have one of those in our house, only she’s in the body of a 7 year old – a body that is growing taller and increasingly stronger by the day.  A body that can now reach things that most toddlers can’t, a body that is becoming incredibly difficult to lift when she decides she doesn’t want to go where Mummy tells her and plonks herself on the ground.  Or who decides she doesn’t want to stand up to get dressed, or won’t compromise by standing up ready to be lifted out the bath when all the water has disappeared down the plughole (and instead finds it hilarious to lie down so that Mummy has to bend over and try to lift her out).

Add to this that our  “7 year old toddler” hasn’t yet managed to use words to communicate, struggles to understand as many words as her Mummy would like (to make both their lives a bit easier) and can be knocked off balance if her sensory world becomes too much for her – and the result is a pretty knackered old mother with a rather dodgy back!

It is all part and parcel of living in ‘Tilly’s World’, a place I’ve grown to love – not the one I expected to be in when I became a mum, but over the years have enjoyed getting to know.  But a world I need a break from now and again.  My body and mind need to relax for a little while so they can recharge their batteries ready to tackle it all again with the full gusto it deserves the next day.

So I’m extremely lucky that, after a lengthy process, I was offered respite via our local authority and social work department.  They provide the funding for someone to care for Tilly for a few hours each week to give me a break/catch up with things I find difficult to do with Tilly in tow/spend time doing things her brother enjoys but she doesn’t.

It has taken me a long time to get over the guilt of ‘sending’ my daughter away to be looked after by someone else – another thing to add to the sense of failure I used to feel in the early years when I evaluated my skills as a mum.  But I now look forward to our respite days.  And so does Tilly.  In fact she is positively glowing when our favourite person  (you know who you are!) turns up at the door to take her away for a few hours.  I’m not going to pretend – but I am too!!

I now push away the guilt and enjoy the precious few hours I’ve been given – its a service not everyone is lucky enough to receive.

So if anyone out there reading this cares for someone in their lives who needs that extra bit of help, and is struggling with how much they have to manage by themselves, I would urge you to contact your local authority/health visitor/GP to talk about respite.  If there’s a chance you could be offered it, fight for it.  Go through the long process to apply for it and take what you deserve.  We are all doing great jobs as carers but in order for us to do our jobs properly, we need support too.

I just wanted to write a final paragraph about the wonderful lady who provides our respite She also works with Tilly at school so they know each other really well.  I trust her to not only look after Tilly but to interpret her signs and signals as well as I can, and to give her the right balance of affection/space/discipline/encouragement – whatever Tilly needs.  As a family, we feel so blessed that she has come into our lives.

 

 

 

 

Gone to the beach

We went to a fantastic birthday party on the beach this morning.  It was Tilly’s little brother’s friends’ 4th birthday, so what better place to have a birthday party during the summer holidays when you live on the coast!  I don’t know why none of us have come up with the idea before now??!!  All the kids loved it – Tilly’s brother was in his element; searching for treasure, pulling hard at tug’o’war, paddling in rock pools, toasting marshmallows on an open fire and, to top it off, eating chips!  He had the best time.

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I had planned to take him to the party by himself, and leave Tilly with Granny as I knew it would be slightly easier for me.  Up until recently, beaches were somewhere that completely threw Tilly off balance.  The soft, uneven sand was too much for her brain to cope with; her vestibular sense tested to the limit.  We take it for granted that our brain can process how to walk on sand – it instinctively plans the movements our legs, arms, torso, head and shoulders have to make to keep us upright and balanced.  The sensation of the sand on our feet can be strange at first but our brains quickly process the texture and how it feels so that we can accept the new texture and continue walking or standing in it with ease.  Not so easy if you suffer from Sensory Processing Disorder (SPD), as Tilly does.

But at the last minute, as we were getting ready to leave the house and when I watched her excitedly walk out to the car with her brother, probably thinking we were going off on an adventure (I’ve been trying hard this summer!), I changed my mind and took her with me.

It started off well because as soon as her little feet hit the sand, she was off!  Strutting along the beach with the biggest smile on her face.  I couldn’t believe she was actually walking so freely on sand, yay!!  Albeit, she did walk through a puddle along the way and her socks and shoes got soaked but thats part of the fun isn’t it!  She continued to make her way to the large rock pool all the other kids were gathered around, and I quickly removed her shoes and leggings so she could enjoy paddling.  I set up our picnic blanket and chatted to my friends, feeling quite pleased with myself for changing my decision at the last minute and thinking that perhaps Tilly was going to enjoy herself on the beach for a change and that I would too.

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It wasn’t long before Tilly’s paddling turned into full on bathing – she sat herself down in the rock pool and splashed away.  Her favourite thing to do at home is splash and pour water over herself in the bath so she was in her element.  But that was when I could feel myself getting tense.  The fun and socialising aspect of Tilly’s visit to the beach was over – it had been replaced by sensory seeking behaviour which I knew could quickly change from enjoyment to frustration on her part.  From the outside, or to someone who doesn’t know her very well, it looked like she was having a ball.  And it started off that way.  But as soon as I saw her expression change to a serious one, her splashing become more frantic and her body shivering from the cold, I had to take her away from the pool.  Sadly, she doesn’t (yet?) have the ability to recognise the sensory signals that what she is feeling is no longer enjoyment but irritation, frustration and cold.

I got her dried off, gave her a snack and the second shock of the day was that she actually stayed sitting on the picnic blanket with me.  I was convinced she’d be off scuttling back to the pool as soon as I let go off her!  I began to relax a little again – until she started playing with the sand.

Sand is another big sensory ‘thing’ for Tilly.  I say ‘thing’ because, like water, it can give her a lot of enjoyment – but, it can quite quickly become too distressing for the sensory processing part of her brain to cope with.  So I’m not too sure how to describe it!  Again, I have to watch her intently to spot when the enjoyment switches to frustration…which brings an end to my relaxing time.

Unfortunately the switch flicked a little earlier than I was prepared for so the result was a little girl with no form of communication who was suffering from sensory overload.  She was covered head to toe in the sand that she had been loving playing with one minute, to suddenly hating the feeling of every single grain of the disgusting texture that was stuck to her skin, in her hair, down her nappy.  Her sensory seeking behaviour suddenly changed to sensory avoidance and the happy walking on sand I’d witnessed when we first arrived was replaced with her refusing to walk and me having to carry her.  There was nothing I could do but get her home and in the bath.

We are quite lucky in that Tilly’s ‘sensory overload’ results in moans and whimpers rather than a full-on meltdown, but it still breaks my heart to watch her struggle with feeling uncomfortable, unsettled and unhappy after an activity that many neuro-typical children (her brother included) love and are able to enjoy as part of a social gathering.  For Tilly, the sensory input the beach provides is overwhelming and overstimulating to the point that she has no interest in the social aspect of being at a beach party with lots of other children.

Its another hill we have to climb on this journey of ours.  We have to find a way of combining the sensory input the beach provides with the social enjoyment of being around others so that family trips to the beach can be a fun and relaxed activity rather than the tumultuous affair it has been to this point.

Perhaps there is someone out there reading our story who has some experience to share or advice they can give?  We’d love to hear from you.

In the meantime, I think little & often is key.  But regardless of how today went, I’m still glad I was brave enough to take Tilly.  Elliot and his friends had an absolute ball and thanks to fantastic hosts, he hardly gave me a second glance so he was completely unaware of the attention I had to give to his sister (again).