Out of the Box

Out of the Box

Out of the Box – Campaigning for Co-ordinated Care for Children with Undiagnosed Genetic Conditions

As GG’s mother, I have spent the past 5+ years navigating my way around the services provided by local authorities, the Community NHS and the DWP. Firstly, I would like to say how grateful we are for the services provided, we benefit from some good services, an excellent school, a great transport company, the support of therapists and a fab school nurse.

However, accessing this support has been a significant challenge – you have to fight every step of the way to secure the support your child needs. Excluding medical involvement, there are no less than 24 touch points for different services.

For each of the 24 touch points, there is a separate assessment process. Each assessment is time consuming, intensive and requires us to continually ‘prove’ that our child is disabled enough to meet the criteria. For the service providers, it means duplication, repetition and specialist resources focused on assessment rather than provision of the service.

Although in the end we have mostly been successful in securing the support needed, the journey has been tough. As GG remains undiagnosed, this adds extra complexity to the processes. On most forms there is a small box marked ‘please describe medical condition’. This is not straightforward. This is a very long list.

Disability Living Allowance awards are generally only made one year at a time as no diagnosis results in no firm prognosis. Despite little changing year on year, we have to repeat the 42 page form with 10+ appendices. This year it took me more than 6 hours in total In the UK there are 6000 children born each year without a diagnosis, none of whom fit in a box.

My vision for the future is of one combined specialist assessment team. They could provide the focal point for the child and their family, assessing their needs across a range of different services – from School Places to Blue Badges, Respite Care to Housing Adaptations. This would allow the delivery teams to focus on provision of services – which I know from regular inter-actions is what they want to do.

There would be multiple benefits to this approach. In this world, diagnosis or no diagnosis, the teams would focus on the needs of the child, not what we are able to write in a box. Being undiagnosed would no longer be a barrier.

For the family it would also remove the continual assessments and allow for fair and consistent decisions. From a funding perspective, this would eliminate a lot of waste in the current system and allow funds to be spent on delivering services, rather than cumbersome and costly assessment and appeal processes.

I appreciate such change is significant and I am presenting a simplistic view of a cross authority / cross team approach. However, I passionately believe that in combining resources – in this case for assessment purposes – we could achieve better outcomes. In the short term, simple changes could reduce wastage. For example, a child allocated a place at a Special Needs School will have a complex disability so it would appear logical that they will require a Blue Badge, transport to school and access to respite services. I am sure this co-ordinated approach would benefit families and service providers.

I will shortly be launching my campaign ‘Out of the Box’ to improve the co-ordination of care for disabled children and specifically to remove the barriers for those who do not have a diagnosis. We should not be penalised for not fitting in a box. By thinking out of the box, some small changes could have a big impact.


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A dream – in more ways than one

Dream

I dream most nights and often wake up with my head full of weird and wonderful nocturnal imaginings – friends out of context, me speaking random languages fluently, dreams driven by fear, and just occasionally dreams driven out of hope.

Many of my dreams are repetitive, one common dream I have experienced since childhood, involving a pigeon, a burglar alarm and an exploding house…. I can only imagine the fun an interpreter of dreams would have with that one.

Since Christmas I have started having another repetitive dream – 4 times so far and it is a rare dream built on hope. Quite simply I dream that GG is a fully functioning adult. It is a dream in more ways than one.

As with most parents, I imagined dreaming of my children’s graduation or wedding, adventures travelling the world or becoming a parent. Never did I imagine that dreaming of my child able to do the most basic things would be so far from reality.

In my dream GG is running, without falling. GG is riding a bike, on her own. GG is making a cup of tea, unaided. GG is holding a conversation and is understood. My GG as a neuro-typical adult, so simple and yet so impossible.

The sense of pleasure is indescribable, my heart bursts with joy. As often occurs with my dreams, the first few seconds after waking I continue to experience the joy, immersing myself in that fabulous image. Unlike most dreams however I come crashing down to earth with a bang. The beautiful image of the adult GG firmly engraved on my mind in the cruel light of day.

I don’t think I can ever fully accept GG’s situation, I know I will never stop hoping. The ‘if only’s’ persist and the dream is sticking its’ fingers up at the limited acceptance that I have managed to achieve.

Then, I look at my amazing GG as she wakes, the big grin as I go to lift her from her slumber, the excitement at a new day – oblivious to the 6 sleep seizures she had during the night.

I focus on the positives of my beautiful child who will never know the worries of a typical grown up. The child who I am certain will forever retain the fabulous belly laugh and infectious giggle. I turn my focus to my dream in the real world – that GG remains as happy as she is today despite the challenges she faces.

That is my true dream, my life’s mission – mission ‘Happy GG’ accepted with pleasure!

mission accepted

IF YOU SET NO LIMITS, YOU ENABLE

The motto of a special needs parent.

No limit

I cannot recall the number of stories of disabled children achieving a milestone that the parents had been told would never happen. The special needs community loves these stories of hope, of achievement – of proving the specialists wrong. It is what we all dream of – especially in the undiagnosed community where the prognosis is often unknown.

I recently congratulated a very special mum whose son had learnt to crawl, defying all the odds – ‘well done you’, I said! Her very modest response was that her son had done the hard work but this sparked a little eureka moment for me – by not setting limits, by providing opportunity, by giving encouragement, any child will flourish.

As we all know, years of the ridiculous idea that boys are better at maths has created a void of talent in the science, technology and engineering worlds – so few women have really made into this male bastion. Even now, in GG’s sisters school, the teacher has the girls reciting the mantra ‘ I am brilliant at maths’ over and over, to undo the societal blockers to the girls inher class.

Removing the perception blockers are even more important in the case with a disabled child. You are told your child will probably not walk, so why bother with the physio. You are told your child will not talk, so you talk for them. You are told your child has a low level of understanding, so you do not engage them in conversation. The battles are tough enough in getting through the day without adding extra pressure.

I recall my extreme reaction to the idea that we might want to consider respite for GG so that our family can do ‘normal’ things. The offers from family to have GG to stay, so that we can have a weekend away with the others. It took me a long time to accept that the break is good, for us and for GG but I remain determined that GG will have a full family life. She will not be excluded, to the best of our ability she will share the same opportunities.

It took me 3 attempts to find a swimming lesson that worked for GG. I need to be in the water with her, which at age 5 is unusual. One teacher (the swimming SEN lead) actually said ‘I don’t know what I can teach your child’ – this fired my determination. The sessions she now attends are small groups – only 4 children, all younger but GG is picked to demonstrate the things she is good at – mostly putting her face underwater! – and the things she cannot yet do pose no barrier. GG can swim, it is inelegant and inconsistent, but the persistence paid off and she loves it.

On holiday, the kids clubs seem out of reach, we certainly cannot leave GG unattended so we go too. I have yet to find a kids club that does not welcome her attendance. Some nervous child carers not sure what to expect but who soon relax when they see how much fun she can be.

A far more mundane example was the aspiration some years ago to enable GG to make a choice – every day for several years, GG has been given a choice of cup colour with breakfast. It was months and months of this daily routine that eventually resulted in a point to the one she wanted, sometimes with limited engagement, other times with determination. It was the arrival of the Peppa Pig vs. the Mr Tumble cups that tipped the balance. Suddenly she looked forward to making the choice, alternating between the 2 and that glorious, magnificent day when ‘(P)eppa’ was verbalised and a few months later ‘(T)bumble’ followed. The simple things.

When GG was really small it was unclear if she would walk. We found an intensive therapy programme that she joined before her 2nd birthday that she still attends to this day. It is hard for her, exhausting despite the best efforts of the physios to make it fun. There are tears, tantrums and frequent urges to step in and say stop. It is hard but we know the benefits. GG can walk, she is trying to run (more of a charge as she leans forward in an attempt to accelerate!), she is developing better balance. One day, we are certain she will learn to jump.

Quite simply, we never say never.

An Ode to Mothers Day

Image result for mothers day image

So being a mum to Gorgeous Grace is a privilege and a huge pleasure,
The cutest grin, infectious giggle, GG really is a treasure,
The joy on her face when we race, or play horsey on the floor,
The cuddles I sneak,  I love to watch you sleep, you are so pure

Of course I find it hard sometimes and struggle with the guilt,
‘oh no’ they say, ‘it wasn’t you – it’s definitely not your fault’,
But I’m the one who made you and grew you in my tummy,
The one who gave birth, fed you – it has to be me – I’m your Mummy

People sometimes say ‘You wouldn’t change her – not for all the world’,
But that’s not true, I absolutely would make things better if I could,
Don’t get me wrong, life without you I could never ever contemplate,
With your siblings, my gorgeous girl, you make my world complete

You show me clearly everyday what is important in this world,
Time with you, to enjoy ourselves, together memories we build,
But the therapies and appointments they do get in the way,
We have to try, keep pressing on, and hope it pays back one day

The days you cry when I brush your hair or during physio,
it breaks my heart, I crumple inside, I wish it wasn’t so,
But then we put you in the bath or take you to soft play,
We feed you the cheese you love and suddenly everything is okay

I love the days when you’re on form and we spend time as a family,
The days you squeal ‘bumble’ when I put Mr ‘Tumble’ on the TV,
The days you snuggle up to me and we read a book on the sofa,
The days we play with baby and have fun and games together

Just keeping track of all you need is a mission in itself,
The paperwork and chasing up – I hope it all will help,
But ultimately nothing matters more than your happiness,
and that my darling girl will remain my personal quest.