Tuesday, January 31, 2012

Every Child Matters







Every child matters, don't they?

Every child is a gift, precious and loved, and deserves the best future possible.

So why are the Government proposing to neglect them?



I am ashamed to admit this but I will: I know very little about the Welfare Reform Bill.  I know a bit about DLA; I know even less about the Disability Additions.
I have a disabled child but am rather ignorant of the huge changes that the Government are trying to make to the benefits system despite the fact that it will have a monumental effect on families with children just like daughter.  I am intelligent, well read and a health care professional so how can I be so blind to these changes?

For the last twenty months I have been coming to terms with the fact that my child is disabled; that she is a wheelchair user, and that she will need additional support throughout her life.  I have been concentrating on living day-to-day, coping with the effect that her disability has had on our family and worrying about what the future holds for her.  Yes, we applied for Disability Living Allowance (The DLA “is a benefit that provides a cash contribution towards the extra cost needs arising from an impairment or health condition. DLA is a non-means tested benefit paid regardless of employment status”), but it was done in a haze and applied for because we were told that we were entitled to it .Due to my daughter's condition we received the higher rate of payment.  The money goes into our account every month and gets eaten up by childcare costs.  Tomorrow we start to receive the Mobility element of the DLA and this will contribute to our wheelchair accessible van (WAV) which will allows my daughter even more independence as we will be able to take her power wheelchair out more often.  I have not thought about our benefits much more than the freedom that they provide us with. 

I have followed Kaliya Franklin and Sue Marsh and their dedicated supporters, wholly supporting their tireless work to fight the Government and bring about a Responsible Reform: but I have supported them in spirit only (I am ashamed to admit. I am not a true Spartan), too caught up in the moment, too tired to read and research and speak out.  And now it is the eleventh hour and I feel that the cart horse has bolted and that I have let the disabled community down, that I have abandoned families living with disabled children – children just like my daughter.

So what does this actually mean for families with disabled children?  In brief:
It is proposed that the Disability Additions Payments will be dropped by over 50%.  Families with disabled children may lose out on up to £1,400 per year – this totals more than £22,000 over the childhood of their child.  Approximately 170,000 families throughout the UK will be affected should these cuts go ahead and Every Disabled Child Matters (EDCM) estimates approximately 63 per cent of all future disabled children will also lose out as a result of this policy.

Personal Independence Payments will replace the DLA for those of working age and is aimed at streamlining the system while making cuts of 20%.  These cuts will affect in the region of half a million people.  At this time, and as of 2013, the PIP will not be extended to disabled children until such a time that they can prove that “it provides a fairer, more objective and more transparent alternative”.  The cuts will not apply to those under 16 but these children will become adults: it is our responsibility to protect their future.

I do not know what the future holds for my daughter or for my family: I do know that the future of others in the same predicament, living with Spinal Muscular Atrophy and other disabilities, will be less bright and less supported if we don’t make ourselves heard.  The House of Commons will soon vote on amendments opposing the proposed cuts to disability additions for family’s with disabled children; they will vote on amendments to preserve the DLA; they will vote to change the lives of thousands of disabled people throughout the UK; they will damage any hope that these families have of their children living independent lives. 


So please, listen... We don’t have a lot of time; let social media work its wonders: don’t let our disabled children be neglected by the Government – every child matters and they all deserve as bright a future as we can give them.  Stand up, stamp your feet, shout, roar and tweet – our children deserve the best that we can give them.  Our children, adults of the future, need you!



Monday, January 30, 2012

Oh, pampers to you...

once again, it's the simplest of things that can bring a tear to the eye...








A well known supermarket, standing at the nappies.

I look up and down the aisle, but i can't find her nappies.

Brand - yes. Active Fit - yes. Size 6 - no.

We need nappies; we've all run out!

Size 6 - yes. Baby-Dry.

And the tears well at the corners of my eyes.

My Eilidh is 3, active and headstrong and independent.

She isn't a baby anymore, even though she can do so little for herself.

I'm struggling to accept this: the realisation that SMA has taken her toddling years.

I don't want to buy Baby-Dry... I want Active Fit! And I want them now....

I want Eilidh to be active!

Do you hear me, pampers?  It's not your fault, but

I want her to be active!



I walk away, a little moment of sadness, of pain, of realisation, of acceptance.

And it's gone; time to move on.

Now, where are the fizzy cola bottles...



Normality - The Special Needs Showcase





I've been thinking about one thing a lot this week – “normality”. It's frequently been on my mind the last few months but last week's Special Needs Showcase brought it to the fore again.  Here's my introduction for this week's Showcase - it took a while to write and I wasn't really sure I knew where I was going with it, but I think that it turned out ok... maybe?


I mean, what is “normal”?  Is it the opposite of abnormal, the usual and just plain regular?
Are any of us truly “normal”?  Sane, with average personality and intellect – surely not! 
Does “normal” actually exist?  Apart from serving to establish a standard – which no one can live up to but many will try to… 
Do we strive for “normality”?  Perhaps… I know that I do sometimes, I wonder if you do, too?  There are days when I don’t want to be different: I want my family to be a regular, run of the mill, normal family with 2.4 children and a dog (and a cat and a couple of goldfish), who goes on holiday twice a year and is always having fun.   But then I stop myself, seeking some sort of reality, and ask “does normal family life really exist?”
Are our lives “normal”?  No, not in the conventional way perhaps, as many of us have children with special needs, but, yes, they are normal for us.  We all find a new sense of normal and we continue to do so probably on a daily basis: after the “diagnosis, after each stage of acceptance, after setbacks, after illness, after changes in our lives.  We redefine what is normal even though each day we are blessed with is anything but normal: but this is our normal and we are living it, one day at a time, as best as we can.  We see ourselves as no different to others - we are not superhuman, we are not heroes (although I do have days of grandeur!) – and we want to be accepted just as we are.  Just as we want our children to be accepted too – just as they are - special needs, disability and all. 




So h0pefulmummy, are you “normal”? 
Do you strive for “normality”? 
Or are you looking  to be accepted?
No, I'm looking for acceptance;
Always.
But, really, I'm just me being me...



“Normal is nothing more than a cycle on a washing machine.” 
Whoopi Goldberg

Tuesday, January 24, 2012

Gymnastics Bear



Bella Bear leaps and bounds and jumps and hops.  She dances and cuddles and kisses.  She adores cake and ice cream.  At night, cuddled close and squeezed tight, she sleeps with Eilidh; Bella Bear is Eilidh's bestest and most loved friend. 

Today, Bella took up gymnastics... yes, that's the light shade... no, Eilidh didn't do it... but, honestly, that's where she landed!  Well, I never...











Monday, January 23, 2012

Pants!





Potty training N was relatively easy:

to encourage - gorgeous pink pants -     check
to sit upon - comfortable pink potty -        check
to enjoy - charlie & lola  (they are my favourite and my best) -   check
to reward - stickers galore -         check
to remember - patience (while under house arrest)         check


I had read Gina Ford's Potty Training in One week.  Niamh was ready, I was ready; we were ready!  Two days later and she was dry - whoopee!  (Please forgive the pun...)

Now two and a half years on, it's E's turn.  She's ready (according to Gina): she's over 18 months - yep, she's 36 months; aware when she is doing a poo - usually because it's so very stinky!; understands simple instructions - but chooses to ignore them; can point to different parts of her body when I name them - "look, boobies! mummy boobies!; and can sit still for more than 5 minutes without getting ants in her pants - yes, yes she can but ah!  well, that's because she has SMA... 

Oh, yes! SMA...

Mmm, I can see a few problems now.  No, she can't pull down her own pants or trousers, nor can she stand so that I can pull them down for her.  No, she can't run to the toilet when she's bursting for a pee - instead she'll probably pee all over whoever is carrying her at arms length as they run to the toilet (in galoshes perhaps?).

So, Gina Ford Frequently Asked Questions I ask you this:

My daughter is 36 months old and mentally ready and able to potty train, but she can't walk and uses a wheelchair: how do I get her to the toilet before she pees everywhere, take her pants off with one hand while holding her with the other, and get her onto the toilet without causing injury to one or both of us?

I wonder what she would say in response?


So, how exactly do I go about potty training Eilidh?  No health care professional seems to be able to give me the answer (probably because they themselves have never had to care for a child with a disability let alone potty train them) but they can - and do - provide equipment to make life easier, to save my back: hoists, toilet chairs, commodes and even nappies (I believe that we can get free nappies from the age of 3 here in Glasgow - but, as with every thing, they are starting to limit who gets them!).  But I need to look elsewhere for real help and I think that the answer may be from other mummys who have found themselves with the same problem; they know - they've been there, done that and got a sticker!  So, SMArty mummys, watch out, I'm coming to you to talk about poo, pee and pants!  I really hope that you don't mind...



oh, the places!

The perfect start to the week!

What inspiring fun!










I love this book by Dr Seuss and I would read it every day if I could - actually, perhaps I should! 

"Oh, the Places You'll Go!"  tells a story about life in all its reality, with its ups and downs and roundabouts, and encourages us to look within ourselves, face up to our problems and move mountains because we can ...

I discovered this gem of a book many years ago in New Zealand and have since shared it with many friends; today I'm sharing this version with you and I hope that you enjoy it.


"Today is your day!
Your mountain is waiting.
So... get on your way!"




Friday, January 20, 2012

A wee card

A lovely surprise...








 

a wee card found upon my desk
after a long day at work
"to cheer you up" :
and it did!
Thank you, helping hands
x




Wednesday, January 18, 2012

It's my birthday!







Today is my birthday.
My present?
Time for me.
A selfish act
or one of
self-preservation?
I feel the later,
if truth be told,
and I hope
all would agree.
I deserve some "me" time
and today is the day.

I wander aimlessly
without a care in the world:
I am content.
I have no company,
no one to talk to,
no one to pull at my coat
or demand from me;
I am anonymous amidst the
noise and bustle of the city.

I am alone but far from lonely;
I know that I am loved on this Earth.
I have family at home
and friends never far away,
but I need no one today.
Just me;
Me with Me -
Such a rare occurrence.

I wander.
I doddle.
I pause.
I ponder.
I browse.
I shop.
I smile.
I laugh.

And then it's time for home,
home to my family.
I am relaxed
and content
and present.
I have enjoyed my time
but it's good to be home.
Happy Birthday, to me!

Eyes Ever Present - The Gallery



"Her eyes are homes of silent prayers"
Tennyson





A smile is seen:
Existing only fleetingly perhaps,
But a smile uses less muscles than a frown
And seems so effortless in comparison.
But our eyes? 
Ever present, 
Our eyes tell the truth; they are open to the world
But only those close enough can see our souls.







This is my entry to The Gallery this week - grab a coffee and head on over to see some other great exhibits...

Monday, January 16, 2012

The Special Needs Showcase



I took a big step recently and volunteered - after a little gentle persuasion (thank you, Emma!) - to introduce the Special Needs Showcase over at Love All Blogs.  I volunteered and now, drum roll please, I am "co-hosting" the Showcase! 

Candi from Looking for Blue Sky kicked off the first Showcase last week (09.01.12) and fifteen bloggers linked in to their blogs.  Linking to Touch & Tickle was slightly nerve wracking for me – and I wonder if it was for others, too? – it was that moment when I opened up to others about my life with a physically disabled child. It was a big step for me but I’m glad that I took it. Why? Because I read some truly amazing blogs! I was humbled by the strength of the blogger's characters, the attitudes that they have adopted to taking each day as it comes (no matter how hard the day…), the honesty that they write with, the raw emotion that they express, and the abundant love that they have for your children. 

I realised that the lives of parents with children with special needs can feel like a roller coaster ride, with ups and downs – and roundabouts, too!  From the point of diagnosis to this moment in time, each day can bring something different; living with a child with additional needs can mean that we experience feelings of happiness, joy and gratitude, but also fear isolation and sadness.  Reading the blogs last week made me realise that I am not alone, that these feelings are normal and that what gets us through the days is the love that we have for our children.  I am a firm believer that while we try to teach our children about life, that they are secretly teaching us (or plotting against us?), but I wonder if those in the Showcase can all learn from each other, too?

I think that the Showcase has a lot to offer me and that I have a lot to give:  I feel privileged to be able to introduce such a host of amazing blogs, their writers and their amazing children.




You can find my introduction - which is more or less this post! - and this week's Showcase here




Sunday, January 15, 2012

A Sunday Morning


A casual walk to breakfast and my senses were exalted. I'm a country girl at heart, but having been in the city for ten years now I have grown fond of the architecture, of the city that exists as you look skywards, far from the pavements where people mingle.  From the top floor of the hotel I first looked at the building and its strong straight lines, then looked south-east over rooftops and spires, towards the day approaching - the day breaking for me! - and I fell in love with the city a little more... 




“Architecture, of all the arts, is the one which acts the most slowly,
but the most surely, on the soul”
Ernest Dimnet





“All architecture is shelter, all great architecture is the design of space
that contains, cuddles, exalts, or stimulates the persons in that space.”
Philip Johnson




“Lift up your eyes upon. This day breaking for you.
Give birth again. To the dream.”
Maya Angelou




“I wandered everywhere, through cities and countries wide.
And everywhere I went, the world was on my side.”
Roman Payne






"May your lum keep blithely reeking
Till your old enough to dee;
May you aye be just as happy
As I wish you now to be"

Unknown







Yes! even the lums inspired me that morning :)


Saturday, January 14, 2012

"tiddly om pom-pom"








Today is my 7th Wedding Anniversary
There is a big brass band playing in my head
"tiddly om pom-pom"
celebrating our marriage and our love.


We will sneak away from our children tonight, leaving them with grannie, stealing a night away for "us"; time to ourselves to fall in love all over again and remind ourselves of the vows we took 7 years ago; time to sleep;  time to dream of the future ahead and the love that weaves our days together.









I love you, D, more than I could ever imagine was possible.
Now, Always and Forever more
xxx

Friday, January 13, 2012

The Simplest of Things






washing hands 




It is often the simplest of things that can bring great pleasure. 


Eilidh loves water - fact. 

Eilidh gets dirty, no manky! at breakfast, lunch, dinner and all times in between - fact.

Eilidh loves washing her hands in  soap and bubbles galore - fact. 


Unfortunately getting to a sink is a little challenging for her.  Our bathroom and kitchen aren't adapted, the sinks too high and inaccessible.  She asks incessantly to wash her hands - she wants to be like Niamh, she wants to be like other children. 


We struggled to hold her at the sink, awkward and uncomfortable for a short time only.  We washed her hands with a cloth, but it wasn't the same for her...  And then I had a brainwave - simple and so, so obvious:  a bowl and water and soap! 


Hooray!! 


At last bubbles and smiles and fun!  There may be water everywhere but Eilidh is washing her hands, her way and independently, with a towel to dry them and hand cream (yes, you read right - so I indulge her a little!) to finish...


The joy is bountiful; the solution so obvious.


Tuesday, January 10, 2012

"the start of the new"

When we need inspiration to change all that we want to change,
to achieve the impossible,
to live the life we want to live,
to be more mindful of the day to day,
there it is on the radio, talking to you. 


I wanted to share a great song with you this morning:
life carries on -
the ne'er is past
but we need to remember that each day is a new opportunity.





"Say Happy New Year
Cause this is the end
Of all it was broken
And you needed to end
Let go of your fears
Say Happy New Year
Cause this is the start
The start of the new
And all that you wanted
All that you wanted
Is coming to you
Its finally here
Say Happy New Year"

Jamie Hartman




Monday, January 09, 2012

Comments please...



Having struggled with Blogger Comments and now with Intense Debate I've decided to go back to Blogger, but sadly this means that I've lost all of my previous comments...


These comments are important to me because the majority of them have been from two lovely ladies who have been of great support since they discovered Touch & Tickle: Emma and Rachel you have listened to my woes and encouraged me through some difficult times - it may not have felt like you have done anything special, but believe me, you have lifted me high with your words.

We all search for comments, whether they be validating, inspiring, uplifting or humbling. We look for advice, support and friendship. Today I have realised, for me, it's about sharing my experience and knowing that I am not alone and hoping that I can also be there for others.


Leaving comments is like starting up a friendship - you will be selective, you will know who and when to reach out to someone, there may be instant "chemistry" or common interests.  And then the hard work begins: you need to work at the friendship, you need to be genuine and sincere in the comments you make, you need to share experiences, and you need to be prepared to give back a little of your self, too. Then, perhaps and hopefully, in time, a friendship may blossom and all will benefit in some way. 

So it starts with a single comment...
Where will you leave comment today? 
Who can you reach out to?
Who will you befriend?






Thursday, January 05, 2012

The Bugaboo Blues





I remember the excitement of unpacking our bugaboo, of building it, of putting an old teddy bear into it and imagining ourselves out walking with our baby.  I remember the joy of taking our first born daughter Niamh for her first walk through the leafy green spring days that filled our suburb and the unconditional love that I felt as I gazed down at her sleeping peacefully.  I recall how quickly the months flew past and, before we knew it, we were walking to the park with Niamh by our sides, toddling along excitedly, as we pushed our new born daughter Eilidh in the same bright red bugaboo.



Now, nearly three years on, Eilidh is growing too big for our red bugaboo; it's time to say goodbye to our good friend -  you have served us faithfully,  but E has grown too tall for you.  I must applaud you, our dear bugaboo, for you have done everything that we have asked of you and never once complained.  It may seem absurd, but I truly adore you and will desperately miss you.


Dear bugaboo, you may never really understand why I am struggling to let you go, but let me try to explain.  For the last 18 months you have offered us normality, you have allowed us to walk anonymously amidst the crowds of people who do not know that our daughter is disabled.  Passersby see Eilidh, her huge smile and her cheekiness and think nothing more of her; she is accepted as a cute little girl in red bugaboo buggy - no questions asked.  They do not see her weak muscles or her inability to stand and walk.  They do not know that she may not survive into adulthood.  Passersby see a mummy and a daddy and two gorgeous curly-haired little girls: a perfect and happy family unit.  You protect us, bugaboo from their stares, their questioning looks, even their pity perhaps, and we can carry on our day to day in our little protected bubble.


So what happens next?  We'll say goodbye to our bugaboo and snappie will come out to play.  Snappie is red, too.  She's raw and edgy and really quite fast; she drives like a dream and can turn on a tuppence.  She shouts out "hey, look at me! amn't i great?", confidently drawing attention to herself, drawing attention to Eilidh, drawing attention to us...  People stop and stare, children gawp, mothers look at you with sadness (or is it pity?); we are no longer invisible, no longer anonymous and Eilidh is suddenly disabled by all who see her.  We feel all eyes upon us, but we lift our heads high and smile: a perfectly imperfect family perhaps, brave and fearless on the outside, but struggling with acceptance on the inside.  So, sorry, snappie, cool as you are, I don't like you!  You make us face up to the stark truth, the harsh reality that Eilidh cannot and will not ever walk and, if that is not enough, you shout it out to all and sundry... and, crikey it hurts, it still hurts so very much.







So what is the problem?  Why do I feel so blue about saying goodbye to the bugaboo?  Well it's all about acceptance, isn't it?  Since Eilidh's diagnosis there have been times of acceptance, fleeting or prolonged, followed quickly by denial and anger.  Each new piece of equipment has brought challenges and has questioned our acceptance; we need to feel comfortable with snappie before we accept her and come to terms with the finality of all that SMA brings.  The thing is, Eilidh is already comfortable with snappie, she already accepts her as her own because she know no different; she doesn't see passersby looking at her, she is just herself. Eilidh won't miss bugaboo, she will instead revel in the freedom and independence that snappie brings and they will drive off into the distance on adventures galore.  And me?  I'll be guided by Eilidh - she is the one teaching me about life - and though our lives have been turned upside down, I will find acceptance and my grieving for the loss of our dear bugaboo will ease. 


Goodbye, dear bugaboo, goodbye...

Tuesday, January 03, 2012

Walking is so over-rated...





"Eilidh, you're lucky you don't have to walk.
You get carried...
 or pushed...
 or you wheel about;
I have to walk everywhere..."




Out of the mouths of babes - Niamh - as we travelled to a local shopping centre for a wander and a bite to eat yesterday.  Incredulous and yet beautifully simple.  I didn't know what to say; I sat in silence, wishing that they could walk together, holding hands, like sisters should...  Not in this life time, however; not in this lifetime.






Sunday, January 01, 2012

Happy New Year!










"Now let us welcome the new year,
full of things that have never been..."


Rainer Maria Rilke