Thursday, 27 February 2014

Fun at the beach

This picture for me says it all. Meet Jack (in orange), Jenna (in the rainbow) and Lindsay. I’m Katy and behind the camera. Jack is eight years old. Jenna is three and a half. The last time Jack was on the beach Jenna wasn’t even born. Accessing the beach before this day was ni-on impossible.

In the February half term a few parents from the Leeds based support group for families of children with disabilities Little Hiccups joined several other families for a leisurely stroll (and a few races) along Bridlington’s north beach. The difference between ourselves and the other families we met was that three of our children have complex health needs.  

National statistics back up what we as parents and carers already know. Children with complex disabilities (physical, sensory, behavioural, emotional etc etc) remain significantly less likely to participate in leisure and sporting activities than non-disabled children. Including strolling along the beach, country parks, historical sites, skiing, and family bike rides. The majority of things we as children probably took for granted. This is not to say that it is impossible for everyone, but have you ever tried carrying a bucket and spade, suction machine, feed pump, oxygen, emergency medication, changing items, food and drinks whilst manovering a 25kg child in a 25kg wheelchair with wheels as small as a computer chair on wet sand. Believe me it’s training for any solider!

Rather than accepting total defeat we at Little Hiccups searched for an all-terrain wheelchair and thankfully found the Kangoo.

What’s so special about this wheelchair?
This wheelchair is amazing!! It's versatile and practical (two things every parent loves). With various attachments it can be taken on the beach, parkland, forests, attaches to a bike as a trailer, converts to a car seat and even has ski's! It comes in a range of colours and even has wipe down material.

For all the family it’s fun! The last time Jenna and I raced in her wheelchair buggy was against my seven year old niece in Toulouse Airport killing time waiting for our plane. Apart from the odd holiday maker and piece of hand luggage the terrain was totally flat. I’ll admit now (hoping our rep doesn’t read this) I think that’s possibly where we broke the suspension. That was fun, and tiring for Ruby and I, Jenna not so much. Compare that to eleven year old Georgia and I racing Jack and Jenna across the bumpy sand, splashing in puddles, legs kicking, gasping against the sea air and their beautiful smiles show it’s no contest.

Exhausted for all the right reasons, walking back up the beech we met Tracey and James waiting patiently on the ramp. Lindsay, Jack and Georgia sped ahead chatting to the kind rep who drove the length of the country to let us play in the sand. Walking with Tracey pushing James in his own chair back up the ramp I didn’t need to ask them how accessible they thought the Kangoo was. I could see for myself every few steps Tracey, heaving, pushing and willing James’ chair up over the slippery cobbles whilst I one handed pushed Jenna in the Kangoo and filmed them struggling.

Once together we dissected test day two and I asked them what the day had been like:

‘’This is awesome’’ (Lindsay)

‘Sooo much easier than James chair’ (Georgia)

‘It’s so much comfier than my own chair, comfier than a car seat…’ (James)

‘How about compared to a sofa’ (me), ‘Yeah, just like the sofa’ (James).

‘I’ll get to do loads more now, can we take this on our holiday this year’ (James).

Why is this so important?
Recently I was chatting to a family member who visited a country park where we first tested the Kangoo. I asked if he’d had a nice time and what they’d enjoyed as a family.

“Nice place but there’s not much there,” he replied.

I might have been incredulous had I not been accustomed to such responses, for over the past three years since having my daughter I learnt that sometimes those who can see, see little. How was it possible, I asked myself, to walk for an hour through the woods and see nothing worthy of note? Linsay and I, parents of children with severe sight impairments search endlessly for things that interest Jack and Jenna through touch, smell and sound. Taking the two in the Kangoo wheelchairs into the woods to feel the delicate symmetry of a leaf, pass their hands lovingly about the smooth skin of a silver birch, or the rough, shaggy bark of a pine is priceless. Thinking of the spring to come and imagining taking them into the woods to experience the first signs of awakening nature after her winter’s sleep. To feel the cool wetter air, the smell of sweet, damp earth, hearing the birds in the trees, touching the velvety texture of a flower and discover its remarkable convolutions is unbelievably exciting.

As parents of children with disabilities/sensory impairments/additional needs we are compelled to be creative in the ways in which we teach our children. The Kangoo’s versatility and practicality overcomes a huge accessibility barrier.  We hope that giving family’s access to use these wheelchairs for day trips like ours, weekends and holidays will give something more than just a single moment in time, but enriches their lives and give their families life long memories (and if like us a hundred new photo’s to share with family and friends). 

Written by Katy Swinhoe

From the left that’s me with James, Lindsay, Georgia and Jenna in the middle and Tracy with Jack on the right.

Monday, 10 February 2014

Meet the Little Hiccups Chairperson - Noel (save us all!)

Noel with his family

So we have all been ask to do this blog thing so you guys can get to know the members of the committee a little better. Hi my name is Noel and I’m 32, I like ice cream and long walks on the beach….what…this is not that kind of blog!

Ok so I got involved with Little Hiccups originally for a number of reasons. I was sat at home one night and a dude with a charity can knocked at my door (not even hassling me on the street!!) as I was talking to him (and letting all the heat out of my house) he asked me if I gave money or time to any good causes, and it dawned on my….I didn’t!

Now at the time he obviously wanted me to hand over all my card details and save the pandas in Scotland or whatever it was (I had to hold back the Wife!) but when I was stood there in my dressing gown giving all the passers-by on Leeds Road a fantastic site I had an epiphany. I can help Little Hiccups!

Little Hiccups were formed by Linsay and Jenny, when they found little to no support for kids under 5 with special needs in Leeds. Freya is Jenny’s daughter and also my Goddaughter so there was my connection. Now at the time we created the committee Lindsay and Miriam ran Little Hiccups. Miriam is also a very close friend of mine so helping with Hiccups was an obvious decision…..sorry Scottish pandas!

When we created the first committee I joined to see Jen and Freya more and to help in any way I could. My primary role has been to help out on our monthly trips out….I’m normally the loud guy you all see when you first arrive with a big smile and two kids hanging off me. I also do the games at the annual balls we have at the Marriott. Give me a microphone and a room full of people and I’m in my element! We have a belter planned for this year…watch this space!!

Speaking of kids, Hiccups has given my two Sprogs a fantastic learning opportunity. They get involved helping me and the committee every trip and they have made some lovey new friends. It’s another reason I wanted to join. It helps them to see the world a different way. Not a lot of kids get to do that. I hope they see me helping and that somehow rubs off on them a little.

Two years on now I’m the committee Chairman. I think it just means Linsay gets to shout at me more when I say silly stuff. I have asked for a crown for our committee meetings but they have still not given me one.

I think that’s enough waffle from me. If you ever see me on an event and you want to chat just give me a prod, say hi, I don’t bite…unless I’m in my Zombie makeup but that’s a different story…

Written by Noel Davis-Atak

Monday, 3 February 2014

Our journey to Little Hiccups

 Our journey to Little Hiccups started in the right place at the wrong time. I took 7 month old Emily to a baby massage group at Headingley Children's Centre. I'd taken Rosy to a class when she was that age and thought it might be a good way to bond with my baby and relax her. Trouble was she was already too relaxed! Seizure activity, especially at night, left her sleepy and lethargic and throw in a global development delay, visual impairment and her tendency to switch off in new surroundings and I may as well have practised my moves on a rag doll. I had already felt the need to explain her behaviour to the other Mums but faced with their bright, alert babies who were keen to be on the move, Emily's differences just overwhelmed me. I should have made my excuses and left but instead I lay next to my beautiful baby girl for the 5 minute relaxation and fought back the tears. Once the class finished the tears flowed and the Children's Centre staff were there to mop them up and point me in the direction of Little Hiccups.

A few weeks later I sat in the same building (well, portacabin!) but I might as well have been on a different planet. My shoulders dropped, I stopped making excuses for Emily and I could even let my false smile slip - I'd found Little Hiccups! Ok, it wasn't an easy step to take as a big part of me wished that we didn't really belong there and we'd wake up to some magic cure or even see Emily 'grow out of it.' And I was disappointed that I didn't meet another mother with a daughter identical to mine who had all the answers. But I did meet families with lots of different needs but who could more easily relate to the desperate feeling in the dark at 3am when you wake to the sound of your child having a fit; the over-familiarity with LGI; the joyless hours spent googling all conditions known to man; and the despair when the postman strides past your house and you have to wait at least another day for that consultant's letter (that only reduces you to tears when it does come because, however obvious something is, there is still a chance it might not be true until you see it in black and white).

Since then we've had some great experiences thanks to Little Hiccups and made some wonderful memories for the whole family. Emily's big sister Rosy has always been welcomed and benefits too. The journey to Little Hiccups may not be an easy one and the new outreach service will certainly have to guide some along the way. But now we've found them we need never be alone again.

Written by Helen Burns