Thursday, March 26, 2015

4 years old

She is 4 today.
I remember the day she arrived in our family;
a godsend and a nuisance in one.
never to solve the problem,
but likely - no definitely - to make life easier.
Life approached at high speed
with the wind in her hair,
enjoying the ride
and the bumps along the way.
LIfe more fun,
more adventurous,
more accessible.
A friend has a vintage car,
a MG.
A thing of colour and great beauty.
The top down,
the sun upon your soul and
freedom as the countryside whizzes by.
But then the clouds descend,
rain seeps through the soft top,
puddles splash around your feet.
The engine splutters and stops.
New parts galore:
more money - 
a bottomless pit perhaps?
Time off the road,
a definite labour of love.
My friend sold his.
It broke his heart, 
but it was the right thing to do.
He hadn't invested much in it - yet...
Perhaps he'll be tempted once again.
She is like a vintage car.
A labour of love.
Weekly maintenance
monthly services,
annual MOTs.
She wears her bumps 
and bruises 
and scars with pride,
each one with a story to tell.
We are invested in her - 
she is part of our family,
we couldn't do without her.
But how we curse her from time to time
when the red light flashes,
the elevator creeks, 
the castor falls off, 
the pneumatic is flat,
when oil leaks on the floor, 
when mud is traipsed in, 
when she'll only move in circles.
when she won't go up and down.
We miss her as she sits out of action.
New parts sent, parcels awaited,
mechanical skills required.
We remember the difference she makes to our lives
We are grateful and thankful...
Until the next clunk, 
or beep.
Happy birthday, Snappie!
We love you

Although it's Snappie's birthday today, this post originally came to life when a Facebook discussion took place, lamenting life with a Dragon, while some praised the unique piece of engineering.  We love Snappie, but she is a labour of love.  We wouldn't abandon her on a tip or leave her sitting unloved and unused: she has changed Eilidh's life beyond imagination - she deserves to be looked after and celebrated.

Wednesday, March 18, 2015

Accessible Housing - is there a crisis?

2,300 activists rallied near Westminster yesterday: the message clear and simple - end the housing crisis.  Children are homeless.  Households with no place to call home.  The solution?  Build more houses.  I agree, but I think the solution is not quite that simple, or if it is, more attention needs to be paid to the type of housing built.

With an ageing population, increasing chronic disease and 1 in 2 of us likely to be diagnosed with cancer, physical well-being is overall going to worsen and physical ability will decline. Increased numbers will have mobility issues - above and beyond those with physical disabilities (genetic or acquired), requiring accessible houses on one level with level entrances, generous door widths and turning spaces, good transport links, safe pavements and crossings, and local medical facilities.

At present in Scotland new housing should be accessible, adaptable and meet the needs of older people: this is in line with nationwide building regulations which state that new houses should be safe, accessible and efficient.  The degree of accessibility is graded with three standards applicable to house design - woefully, a basic provision is all that is required to adhere to regulations.  Basic provision is not enough for those who are wheelchair dependent; the bar needs to be set higher to benefit those in need, to adapt to our changing society. 

Disabled people face barriers in their everyday lives that prevent them from being full and active members of their community.  The Accessible Britain Challenge encouraged communities to become more inclusive and accessible and looked at four areas of interest: improved mobility, innovative use of buildings, spaces and places, safer neighbourhoods and inclusive social activities.  The entries were simple and effective.

However, in my opinion the first barrier  is ensuring that those with disabilities, chronic illness and the elderly are integrated within a safe and secure community, in houses suited to their individual needs, allowing them the confidence and freedom to engage in the world around them, allowing them to make use of the facilities available to them.  Attention, first and foremost, must be made to providing accessible homes. 

Accessible, adaptable housing not only benefits the individual, their family and their carers but also has socio-economic benefits for the community and society overall.  It makes sense to build such housing.  I ask the Scottish government to commit to building accessible, adaptable houses totalling ten percent of all new builds.

One woman yesterday said, “If you don’t have a home, you don’t have anything... Home means love, family and security. Without a home you can’t invest in your future?”

To that I can add, 

"An accessible, adaptable home allows independence and changes lives - everyone should have the right to a home they can move freely in."

Friday, March 13, 2015

Are we dying or living?

It is a somber realisation that some people donate to animals more readily than to their fellow man, that an image of a sad, bedraggled dog gets more clicks than a beautiful boy whose life is not quite going to plan.  I understand, however, why this is the case.  People give to charities that they feel passionate about, to causes they understand, to plights they relate to; they give because they can, with no harm meant to those they do not support. 

This post is not about charitable giving.  It is not a discussion of the questionable tactics used by Alex, Harrison's dad - on which I have previously written - for he is  a man who shows that his love is deep and will "do whatever it takes to save him (Harrison)".  This is about the portrayal of illness.

Duchenne - just like SMA - is a life-limiting illness with many uncertainties and unknowns.  Despite this many live their lives joyously, abundantly and with hope and fun in their hearts, experiencing all that the day to day can offer.  They choose not to focus on death - death comes to us all - but on life because if they focused on death, quite simply, they would forget to live this one wild and precious life they have been given.

Advertising and media campaigns come and go, and who can say what the life span of a blog post is?  One thing is certain, however, our words echo into eternity; we will be remembered for our words.  

I wonder how Harrison feels about his father's words?  I wonder if he knows that he is dying a slow, painful death?   I don't know how much Harrison knows nor how much he understands, but I do worry that such a negative and desperate picture is being created - not only for Harrison but for others with duchenne and similar neuromuscular conditions.   

I worry that one day Harrison will be approached by someone at school and taunted repeatedly, "you're dying! you're dying!" because of a newspaper left lying around.  I dread he'll one day see, inadvertently, the advert and fear his own untimely death.

We do not know when death will come.  We do not know what death will bring.  We do know how to live and we need to hold on to that, encouraging others to affirm life too, disability or no disability.  Those with duchenne - and SMA - live first and foremost with their conditions. Life is for living: it's really not all doom and gloom.

The most important thing in illness is never to lose heart.

Nikolai Lenin

Thursday, March 12, 2015

Car Seat: the child with additional needs

A while ago, and this is what prompted me to contacting BRITAX (which, in turn, led to me becoming a Mumbassador), I wanted to find out more about car seats for children with additional needs like Eilidh.  Although I did all the research, I never did get round to getting her a new car seat...

I contacted BRITAX and Mark Bennett, Car Seat Safety Expert at BRITAX, sent some answers to my questions:

Does BRITAX manufacture a special needs car seat?   If so, can you tell me about it?
We do make a child seat - the Traveller plus (£599.50) for children with special needs but also some of our ERWF models (from around £220)  are used depending on the child’s particular requirements. It is generally best to obtain these through specialist retailers so that they can help make the right selection for the individual case. One such retailer is the In Car Safety Centre at Milton Keynes, Belfast, or Essex (tel: 01908 220909 web: 

When asking forums on social media sites, the one question that everyone asked is "why are car seats so expensive?".  Why are special needs car seats so expensive?
The cost of a child seat will be generally relative to the amount of engineering, test procedures, performance requirements,  and the quality of the materials used. On a personal view, I don’t really think that they are expensive when you compare them to what we all spend during our child’s first years on things that do not have an effect on our child’s safety & wellbeing. I am sure that there are many comparisons that could be made quite easily. We do have to remember that in an accident we need the child seat to perform well and protect our child under very adverse conditions.
In the case of Special Needs seats, the cost is also affected by the low volume when compared to our other child seat products. The weight and size is an issue in terms of materials and strength with an extended weight range all have influencing implications on the final price.

Considering car seats are required by law, is it fair that families with children who have additional needs are discriminated against when it comes to the cost of car seats?
As market leader and experts in the field of the safety of children travelling in cars, we felt it important to provide a child seat option in this category. We do appreciate the cost implications and it would be all too easy to focus only on high volume product  lines but that is not the BRITAX RÖMER way. We understand the need for all children to have access to good performance child seat products and this is one of the reasons that we make sure that the Traveller plus is tested and approved to European Standard ECE R44.  Nevertheless, it is of any help, I understand from one of the specialist retailers that there are schemes available for assisted purchase in some case from various charities. 

Do you know of any reason why such car seats are not supplied by wheelchair services/physiotherapy/occupational therapy and instead have to be funded privately?

Unfortunately, I cannot offer a definitive answer to this. Perhaps it is a question that should be directed to these organisations for clarity.

Are special need car seats subjected to the same vigorous safety testing?
This is not a legal requirement for this category of child seat but at BRITAX RÖMER we ensure that all our products meet very high standards of safety and confirm that the Traveller plus is fully tested and approved to the European Standard ECE R44

The real issue is this:  although I understand that car seats for those with additional needs - like every piece of equipment needed - are produced in low volume, I feel that, as the seats are required by law and for safety purposes, that the additional costs (if not the whole cost) should be absorbed by local authorities or health boards and not by charities or parents.  The costs encountered by a family with a child with additional needs are astronomical (Please see Scope: Extra Costs and a PDF "Priced Out") and, contrary to public belief, not everything is handed out on a plate. So who should meet these costs?  Every child deserves the right to travel safely.

Since writing this post, our need has changed.  With Eilidh growing we are considering her travelling in her wheelchair in the WAV - but that's a whole different story!