The need for co-ordination….

There are so many agencies, that we have to link into,
To get the support that GG needs – it’s more than just a few,
It seems crazy to us parents, of disabled kids,
There is no co-ordination – it gets everyone in a tiz!

So here are a few examples, of how crazy it can get,
Two children, quite similar, whose needs should both be met,
One is given a wheelchair but cannot get a blue badge for parking,
The other has the badge but is refused a chair – it’s just barking!

Then there is another child who is physically a bit more able,
Who receives DLA for mobility at the higher level,
The other who sleeps very little – awake a lot of the night,
Could not get the care element, despite being offered respite…

Then there are the school places, that prove such a fight,
It is so important for our kids, that the school is right,
Catchment areas irrelevant, if your child would be better off elsewhere,
We appeal, complete masses of paperwork and in the main – we get there.

But then comes the issue of transport, how this is treated is bizarre,
The inconsistency in approach, the experiences are dire,
Once a school is in the statement, transport should be there,
But LAs, strapped for cash, will argue it – it’s so unfair.

The lack of resources could fill, several different blogs,
We know the world we live in, but it makes it such a slog,
Please think about the consequences, of not providing support,
Many more claiming benefits, more parents out of work.

At every stage we battle, and appeal the crazy decisions,
That agencies decide upon, in total independence,
Our plea is for co-ordination, a central point to go,
To someone who can advise us, someone in the know.

More often than not as parents, we don’t know what is there,
Don’t know what to apply for, and miss out on our child’s share,
A point of co-ordination, would ensure this didn’t happen,
And cut down on costs from undoing the mad decisions.

As some of you will know – if you are a regular follower,
Gorgeous Grace has no diagnosis, and this adds extra bother,
No box to tick, no package offered, at times it is rough,
Please listen to us, help us out, and make it all less tough.

A meteoric rise in ability!

We joined the Snowdrop programme about 5 months ago,
Whether it would work, we really didn’t know,
It really is quite different – nothing like the rest,
But we will try anything for GG, so gave it our best.

The first 2 weeks were difficult, we found it all quite hard,
Fitting in 2 new hours of therapy was quite a task,
On top of the other therapies, it seemed almost impossible,
But gradually we built it in – GG’s schedule was so full…

Gorgeous Grace enjoyed some activities – they even made her laugh,
But lots of it she didn’t like, for GG it was tough,
We were determined to keep it up, despite the many tears,
We were not sure it was the right thing but so glad we persevered.

To fit it in, 2 hours a day, we had to be organised,
Everyone needed to be involved so a schedule I devised,
School proved to be very supportive and some of the programme they do,
No professionals objected as long as we did their stuff too.

Some days were tough, no question, a challenge to fit it in,
Some days it didn’t happen – but no point getting in a spin,
Start again the next day, it’s all about repetition,
We started to see improvements so had no hesitation.

The day that GG started doing Snowdrop activities with her doll,
The day that she walked backwards with no help at all,
These days made it all worthwhile – we were getting somewhere,
Until she tried it on baby brother, that proved a step too far!

The Snowdrop families are lovely, and have proved a great support,
Andrew who runs the programme builds a great rapport,
Every day he is available providing advice and motivation,
Wife Janet is also great – they are a good combination.

So 5 months on, it was time to head for GG’s reassessment,
Nervous and excited, on our second trip to Devon,
By the time we had finished, the nervousness felt silly,
The conclusion was positive – a meteoric rise in ability.

So programme 2 is underway – focusing on what comes next,
Learning things we thought impossible, is our new test,
For GG it’s a no-brainer, the results have been impressive,
And for us as her parents, we focus on the hope it gives.

There are lots of arguments about trying to do too much,
But no-one tells you what is right – there’s no proven recipe as such,
There is no doubt for us though – we are absolutely certain,
Of all her therapies, none works alone – the success is the combination.

Trick or treat? Witches and fireworks.

For Gorgeous Grace’s big sister, this time of year is full of excitement,
Halloween then bonfire night, a week of non-stop merriment,
Dressing up for trick or treating, knocking on doors with her friends,
Going to the bonfire and fireworks, like most kids – she doesn’t want it to end.

But once again we are reminded of how different it is for Gorgeous Grace,
How much she can miss out on the fun and games, unlike the rest,
In comparison with the other kids, she just cannot understand,
What all the fuss is about – from the sparklers to witches wands.

We make every effort to involve GG, but need to be careful it is not overwhelming,
Too much at once, too much noise and excitement and she will need calming,
But this year for the first time, she did go out to trick or treat,
Dressed as a little werewolf, our gorgeous girl was wary walking down our street.

She did it! She knocked on doors and gave a little ‘growl’,
Far more cute than scary was our little werewolf on the prowl,
Of course GG could not keep up, as after sweets the others chased,
But she took part, at her own pace with a smile upon her face.

Bonfire night however is definitely too much to chance,
Non stop fireworks, way too loud, that start more than a week in advance,
Bang, bang and bang, they go and have GG jumping out of her skin,
Unexpected, oh so scary, they maybe pretty, but make such a din.

GG is not alone in this respect as became evident,
When we tried to book onto the ‘quiet bonfire’, it sounded like a great event,
Especially set up for those with additional needs to share in some of the fun,
Weeks in advance, it was oversubscribed, no room to let us in.

So instead, one of us wraps up warm and heads out on Guy Fawkes night,
GG’s big sister in tow, all excited, enjoying the spectacular sight,
The other stays at home to comfort GG, to keep her warm and safe,
Big sister asks, once again, ‘why can’t we go as a family like all my mates?’

So, when you consider having a fireworks party and inviting round a crowd,
Spare a thought, not just for the pets, but for many others for whom it is too loud,
Don’t get me wrong, we want to have fun, our spirits it does lift!
But hear our plea, don’t have fireworks fortnight, please stick to just the 5th.