THIS is how to do inclusion!

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It is just a few weeks since we made the big move, a daunting 200 miles from all that was familiar in pursuit of a better life for our family. GG was at the heart of our house search, having identified a fantastic new special needs school for her but we also found ourselves in a community where inclusion is the norm.

At risk of harping on about how many battles we had in our previous area – a year to have GG accepted into a Rainbows group, the 3 lots of swimming lessons were trialled before we found one that works, a 9 month wait for an appointment with the incontinence team to be told GG didn’t qualify, a transport battle that will go down in our family history as one of the worst , the list is endless.

Within just 3 weeks here, we have been able to establish a fantastic set up.

THE ALL IMPORTANT SOCIAL ACTIVITIES:

One email to the (Council run) leisure centre before we arrived and a swimming teacher stepped up to give GG 1-2-1 lessons. The trial lesson went swimmingly (pardon the pun!) and GG, who has a talent for swimming, absolutely loved it. An email to the local Brownies group and steps are in place to ensure GG can attend from September (our choice of date) with 1-2-1 support. An application to start horse riding lessons is also underway with a centre that hosts regular disability competitions.

I was however not expecting the amazing inclusive sports network here. On a weekly basis there are two accessible sports sessions at the local leisure centre that focus on allowing families to access a fun sports session together. There is an inclusive dance day this week, and a disability competitive swimming group for when GG reaches 10.

Our fabulous girl has the opportunity to access as many activities as her siblings, including some where we can all participate; this will without doubt transform our family social life.

 THE POWER OF A GREAT SCHOOL NURSE:

A school nurse assessment was needed to establish a healthcare plan for both school and transport. The nurse visited us at home, within the first week. The primary purpose of the visit was the healthcare plan however we also in that session organised a referral to a specialist dentist (requested but never managed before), the delivery of continence products, an introduction to the local carer forum and hordes of advice on local disability friendly organisations and groups. The nurse, without me asking, also then spoke to the GP to expedite the list of 13 referrals needed to NHS services. I was blown away!

TRANSPORT THAT HAD ME IN TEARS…..OF HAPPINESS:

Tears over a little white bus….rock on, the life of a SN parent! The day after we moved (as soon as we had a postcode), we received a pro-active call from the transport team to assess GG’s needs. A collaborative discussion about appropriate transport for GG was held, the paperwork was completed and signed off within a week and just 2 days after that, we were contacted to say transport was agreed and given contact details.

It was half term and the fabulous driver took the time to come and visit GG, he bought the bus (dedicated to SN transport so no conflict with airport runs this time), and spent time getting to know our gorgeous girl and letting her choose where she would sit. I won’t say I wasn’t nervous on day 1 of pick up, it is a big deal to hand your child over to relative strangers, however I was as comfortable as I could have been. I did follow on in my car just in case GG was upset but there was no need, GG full of smiles went into school holding the drivers hand and hardly glanced at me. Just brilliant.

TRUE INCLUSION AT A SEN SCHOOL:

A call on day 5 at school from the headteacher confirmed my view that we have 100% made the right decision for GG. We are still in the throes of piles of admin and a learning curve for both sides around GG, her needs and how the system here works. However in the midst of this I had a call to explain just how delighted school are with how GG has integrated in her first week. There was nothing but good news about how GG has settled so quickly, how she is building friendships in her classroom and pro-actively seeking out her peers to inter-act. It would have been so easy to focus on the lack of toileting success or GG’s lack of understanding of appropriate play at times but no, the leader of the school called me to say that GG is already an asset in her class and they are pleased she has joined the school. That for me, is a truly inclusive approach.

IT IS EARLY DAYS….

…however we have nothing but positive experiences so far. The local community is so welcoming, there is huge support for the SEN school, local sensory centre and inclusive sports groups. More than anything else though has been the acceptance of GG when we are out and about, from the screeching to compete with the parrots at the garden centre, to her deciding to grab the hand of a lovely lady walking through town, the responses have been so supportive. Long may this honeymoon period continue.

GG’s Learning Disability Journey – Why Change Is Needed

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GG has an undiagnosed genetic condition and is known as a Swan (Syndromes Without A Name) however as part of her condition, GG has lots of diagnosed elements – 3 types of epilepsy, low muscle tone, hypermobility, squints and amongst the most recent, a severe learning disability.

I recently attended a conference for parents of children with learning disability (LD), particularly around challenging behaviours – a topic I have written about before: https://theworldofgorgeousgrace.com/2016/10/05/is-there-any-help-out-there/

In that one day I learnt more about LD and what should happen when a child is diagnosed, both from the speakers but equally importantly from other parents. It became clear that the experiences in the room were inconsistent, that support is inadequate and parents felt lost and isolated.

Over the past few weeks I have reflected on our LD journey to date and wanted to share and explain why change is so desperately needed.

Being diagnosed with a Learning Disability

The way we received GG’s LD diagnosis was far from ideal. It came in a letter, out of the blue. It was a referral letter for another set of tests, in which the little summary of medical issues which is listed at the top of all correspondence, suddenly named ‘Learning Disability’.

Up to this point the catch all (and personally detested phrase) had been Global Developmental Delay (GDD). There was no explanation for the change in terminology and certainly no consideration to the parent receiving such a life changing diagnosis via a routine letter. When questioned we were informed that around the age of 5, GDD is re-evaluated, and GG had been assessed to have a learning disability.

Our Learning Disability Pathway

As outlined above, this was not our first experience of a new diagnosis however it was a very different experience. When compared to the epilepsy diagnosis for example, a neurologist was involved, immediately assessments were organised, EEGs were requested, medication discussed, support groups flagged to us. Yet, an LD diagnosis which has been equally life changing was delivered with no package of support, and to date the only assessments GG has had we have paid for privately due to an absence of any other option.

NHS guidelines state that a Positive Behaviour Programme should be agreed for all children with LD. In our area, children under 9 are not offered LD behavioural support as it is deemed to be difficult to ascertain how much of their behaviour is due to circumstances at home vs. their learning disability. GG is diagnosed through a number of reputable assessments as having a severe Learning Disability but this does not afford any support until she is 9 years old. Yet, it is clear that early intervention is highly recommended from all LD specialists.

 Managing LD Associated Health Risks

Within the last 2 years, we have specifically asked whether GG would have a normal life expectancy -accepting it can only be based on information known at the time. We were told as long as the epilepsy remained under control, there was no reason GG would not have a long life ahead of her. We were more than a little relieved and turned our attention to providing a stable and secure future for our gorgeous girl.

However, at the aforementioned conference, I learnt that this is completely inaccurate. Research shows those with LD typically – and utterly shockingly – die around 20 years younger than those without. There is a clear Government backed mandate to improve the prognosis of those with LD as tragically, many deaths are avoidable.

We were not given these facts, that there are higher rates of stomach cancers, heart disease, leukaemia, diabetes…..had we known we may have tried to address GG’s high dairy diet before now. We were not even told to register GG on the LD register with the GP. We were completely devoid of known information that should have been available to us.

Again if we compare to the epilepsy diagnosis, we were made aware of an increased risk of death during sleep (SUDEP), we have video monitors, movement monitors and ensure we regularly check in overnight. It is really tough to hear but we would rather know and do our utmost to manage the risks.

So What Next for GG?

We are on the cusp of starting a new life in the countryside and moving our family North. Armed with new information, a supportive network of LD parents and superb LD professionals campaigning for change, we are determined to ensure that from here onwards, GG has a much better experience. I know what to expect and what to ask for. 

I am also committed to ensuring that others have a better experience and hope that by sharing our journey, it will help to shape the much needed changes to come.

 

So what is ‘really disabled’ Mr Freeman?

rdd-logo-transparentHow can a politician decide-  over the expertise of a medical professional – that a physical disability is a ‘real disability’ whereas less visible disabilities are not?

It was with dismay that I read about the plans to restrict Personal Independence Payments to the ‘really disabled’ – so what does ‘really disabled’ mean? From the list published today by the Department of Work and Pensions, it basically means a visible disability. A wheelchair user or a blind person are quoted as being those in need of most support. However, if you have autism, a learning disability or anxiety disorders (plus many more) you are not in the eyes of the politicians ‘really disabled’ – despite being diagnosed by medical professionals who have spent years understanding how debilitating such conditions can be.

For those with rare diseases or so rare they remain undiagnosed, often the complexity of the condition means that there is a combination of both physical and non-physical disabilities. This is certainly the case for GG, my amazing and brave daughter.

Of all the challenges we face in supporting GG, the physical ones – are for us – the easier aspects of her disabilities to manage. I am not saying it is easy that GG cannot walk far and still needs to be lifted into her car seat – however, we are able to use her buggy or wheelchair when she needs it. The epilepsy is by far the most terrifying aspect of GG’s condition but fortunately for GG, there is medication to help, professionals to support.

However, on a day to day basis, the challenging behaviours which are the result of a severe learning disability are much more difficult to handle. We cannot remove GG’s anxiety with a physical aid, there are no tactics we have discovered so far that can help her regain control in the middle of a sensory overload, there is no tool for us to use to fill the gaps in her communication which results in frustration, screeching and meltdowns.

I know for many disabled people, the physical aspects of a disability are the biggest challenge but to suggest that a physical disability is ‘really disabled’ whilst the completely debilitating aspects of non-physical disabilities are not is ludicrous. For my daughter GG, and the 6000 children born every year who remain without a diagnosis, the lack of a ‘label’ is highly likely to result in an even higher level of questioning when what we really need is more support.

So who made the decision about who is ‘really disabled’ and what that means? None other than MP George Freeman who previously held responsibility for the UK rare disease strategy….

I was even more shocked when I learnt that the proposer of such changes was none other than MP George Freeman – the previous minister for life sciences with responsibility for rare disease. In a recent ‘All Party Parliamentary Group on Rare and Undiagnosed Conditions’, Mr Freeman outlined the work to implement the UK strategy for rare disease – stating that “nowhere is the challenge more acute or relevant than in rare disease”. More information can be found in this link.
http://www.raredisease.org.uk/news-events/news/rare-disease-day-2016-westminster-reception/

How can a minister who has had first-hand experience of rare and undiagnosed diseases, who has heard directly from families who manage such conditions on a day to day basis, in his next job take such a narrow view of disability as being the physical aspects?

On Rare Disease Day 2017 let’s make our views known to Mr Freeman and let him know that ‘really disabled’ comes in many different forms all of which need appropriate levels of help and support.

You can tweet Mr Freeman using @Freeman_George.

Please also see a further post I have written for Rare Disease Day 2017, published by Scope: 

Dear Mum and Dad of a newly undiagnosed child

MY LEARNING DISABLED CHILD IS NOT A BURDEN ON SOCIETY

 

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On the contrary, GG contributes significantly to the world we live in and genuinely helps to make it a better place. It would be so easy to launch into stories of inspirational Paralympians, people with Downs Syndrome running their own business, or the building evidence of genius’s and talented artists who were likely on the autism spectrum but it is so much simpler.

GG brings immense joy to our lives and to those around her, she enjoys the simple pleasures in life and reminds us what is important. GG is not encumbered by financial concerns or fears of what is happening in this world but revels in the here and now, something we can all learn from. Being able to giggle at the daft things, she keeps alive the best of toddlerhood lurking inside us all.

GG is also completely non-judgemental – she takes people as they come. Racism, ageism, fat-ism, none of this would even occur to her. GG is the only person I know who honestly has no unconscious bias.

Along with most children with disabilities, GG demonstrates a level of bravery that I could certainly only aspire to. I am ashamed to think back to the levels of complaining when I suffered with back issues on and off through my 20s. It wasn’t nice and the physio was not fun. GG does physio every day. Climbing stairs is always hard for her but she does, all the time. Epilepsy is hideous and whilst I am still recovering from the aftermath of a seizure and my reaction, GG picks herself up and carries on with her day. If the rest of the human race was half as resilient as my daughter, this world would be a much better place.

The other fabulous trait that makes me smile all the time, is a complete disregard for materialistic possessions. Don’t get me wrong, GG has many many toys as we feel compelled as parents to surround our children with gawdy plastic items. The truth however is that GG is completely happy with her baby doll, a pram and an apple. Even the tooth fairy brings chocolate to GG. Yes, she will also be entertained by the iPad but it isn’t an important factor in her life, and TV is for wimps who feel the need to sit down!

If the view of ‘contributing to society’ is obtaining a degree, having a distinguished career or excelling as a football player then no, it is unlikely that GG will do any of these things. However, for the majority of people, the important things in life are not achievement or materialistic based. Caring, sharing joy and valuing other people are what matters and GG exhibits these traits more than most.

Despite the huge progress in attitudes to disability and having come a long way from when disabled people were hidden away, it is a sad position that I, and other parents, find ourselves having this debate. However when I have heard so many challenges as to why public money should fund services to disabled children, it cannot be ignored. Early intervention, good education and enablement therapies ensure that disabled people are empowered to contribute to society so let’s fight to continue to make provision better.

 

IF THIS WERE HAPPENING TO MAINSTREAM KIDS, THERE WOULD BE UPROAR

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Imagine a world where your child does not have their basic needs met at school. You turn up one day and the staff explain, very politely and regrettably, that they cannot do what your child needs today. Would you smile back? Say that’s okay? Leave your child anyway and head off to home / work as normal? This is what the parents of disabled kids are expected to do every day.

Imagine that your child is told to stop communicating. The books are all removed from the library. The next day, there are no pens. You are reassured that the pens will be provided but only once every 6 weeks. The school does not have budget for your child to be able to communicate or learn. Core equipment, an eye gaze which allows children to communicate through eye movements, or an iPad which provides a voice for so many – not funded because there is no money.

Just imagine your child after lunch being told to sit in a corner and not take part in the class. Observe, yes. Take part, no chance. You see, there is only funding for a part time 1-2-1. Even if your child happens to have medical challenges or a lack of safety awareness, well we will take our chances rather than overspend. After all, it’s okay in the morning and that will have to be good enough.

Now, your child’s feet have grown. Clarks is available to you (other shoe shops are available) but not for at least 6 weeks. You have to squeeze your child’s feet into shoes for at least 6 weeks and by the way, you need to attend 3 appointments, all at short notice, in the middle of the day and parking costs £6 a go. Oh and be grateful you don’t have to pay for the shoes.

Imagine that you start work at 8.30am and go to drop your child at breakfast club to be told that it does not exist. Not only that, but there is no childcare at all available around school hours. In the holidays you might be offered 1 day a week – school hours only of course.

Children with different abilities will have (usually after a long fight) either a statement of needs or what is now an Education, Health and Care Plan (EHCP). This outlines the needs of each child and forms a legal requirement for provision. Unfortunately, there are 2 major issues. Firstly, the true needs of a child are rarely properly documented leaving gaps. Secondly, even when the needs are documented, they are not always provided. Parents will fight for the correct provision and as a result are labelled as ‘difficult’ or ‘tiger parents’.

My daughter has an undiagnosed genetic condition – known as a Swan. (Syndromes Without a Name). I have therefore become one of the ‘difficult parents’ who is continuously fighting for the basic needs of my child to be provided. I don’t want to be difficult and neither do others, but we do want to be heard. Britain in 2016 needs to think differently and we need you to help us shout it out.

If you would like to help please feel free to RT to the following people:

@PennyMordauntMP (Minister for the Disabled)

@EHRCChair (Chair of Equalities and Human Rights Commission)

@Sajidjavid (Minister for Local Government and Communities)

@JustineGreening (Minister for Equalities)

 

An ode to #changingplaces #dignity #phantomloos! 

There are less than 1000 #changingplaces in the U.K. despite this being the key barrier to disabled children and adults accessing every day activities. Just imagine not being able to go to the loo in a dignified way when out of the house. This Halloween please share this poem to raise awareness of #phantomloos……

An ode to #changingplaces

Now every parent will tell you of nappy changing horrors,
We empathise and laugh together at the highly amusing stories,
I, too, join in the fun, giggling about poo and wee,
But as ‘Gorgeous Grace’ gets bigger, it has stopped being quite so funny.

So, where haven’t we changed her nappy is probably easiest to start,
Too big for ‘baby changing areas’ – most common place now is the car,
On the grass if the weather is fine, it’s not really dignified,
But the worst by far, the public toilet floor, it leaves you horrified

We don’t have too many choices, unless we stay home all day,
We went to France, had a lovely time, until there was a poo on the ferry,
‘Non, vous cannot use zee medical room’ the toilet floor will have to do,
But it’s filthy, there’s no privacy, I just want to protect you.

The playground, café, supermarket, shops, they all present a challenge,
The soft play area, swimming pool, it really makes me cringe,
For now, GG is not too fussed, just wriggles to make it ‘more fun’ 🙂
But what about later, she’s getting bigger and won’t want people looking at her bum.

The frustrating part is that people don’t want to help, no-one seems to care,
Instead they walk on, avert their eyes or even worse they stare,
It’s not a lot we’re asking for – just a changing place,
The gauntlet laid, the challenge set – who will provide that place?

Is there any help out there?

Over the past year, GG has started to struggle with her behaviour and it has become progressively more difficult. It has been incredibly challenging at times with full on meltdowns – and no, I do not mean a toddler type tantrum – I am talking about complete loss of control, repetitive aggressive / dangerous movements, screeching that must hurt her throat and an inability to be distracted at all. Occasionally GG is hurting herself despite our best efforts to keep her safe. Anything from 15 mins to an hour is typical and it breaks my heart.

 

Wrapping GG up into a huge cuddle, using deep pressure and singing repeatedly is the only strategy we have for these situations. It has a varying degree of success but at least keeps her safe and if I am honest the singing helps keep me calm too. However we are very aware that we won’t always be able to do this – already a tall 6 year old, for a child with low muscle tone and hypermobility, GG is incredibly strong when determined.

 

Of course where are my other kids when this is happening? Looking after themselves is the answer – the amazing big sister watching over the well behaved younger brother, both knowing that staying away is safest and so wonderfully bringing GG her favourite blanket and an apple that can so often provide a comfort – but at times is thrown back in their faces….how to explain that GG cannot help it? How to ensure that they know GG loves them and treasures them and in that moment she is not herself.

 

It is difficult to admit you need help with behaviours. I felt a failure that I could not manage a 6 year old, that GG who most people see as the truly adorable giggly girl she is, could prove such a challenge at home. I found this really difficult to vocalise. However we needed help and that is what I sought – rather unsuccessfully….

 

Avenue 1: School – Of course GG’s behaviour in school is impeccable, brilliant in fact. That means we don’t get any help with issues at home.

Avenue 2: GP – Try school. Umm did that. Oh.

Avenue 3: The amazing Swan networks – they came up with the most promising options, our Learning Disability nurse (doesn’t exist here), the challenging behaviour foundation – a fab website with loads of resources but you need a group of 10 to access any workshops. Educational psychologist – ah yes but they are attached to school – see point 1.

Avenue 4: School nurse – suggested CAMHS – we explored that option. The first questions were around drug use, alcohol abuse and underage pregnancy. Clearly not quite the right forum for GG.

Avenue 5: Paediatrician – suggested the school nurse and to look at the ‘Local Offer’ – this did lead to the discovery of a great resource online but nothing which fitted the bill (I’ll return to ‘the bill’ shortly)

Avenue 6: The Care Commissioning Group (CCG) – yes I resorted to meeting with the CCG team to try and understand where in the jungle of LA / NHS provision did learning disability behaviour support sit. The answer ‘we don’t know’.

 

In the end we racked up another impressive bill by seeing a private educational psychologist – money well spent as it has helped so much but it should not be necessary. A full and proper assessment of the extent of GG’s learning disability – it hurt to hear, I shed a few tears but it helped us to understand. We can now distinguish between misbehaviour and anxiety – we had not realised how anxious GG can be, reassurance and understanding has helped our gorgeous girl so much. Tactics for turning aggressive behaviour to her siblings into fun, enrolling GG’s siblings in how to do this proved a great move. This has started to really help life at home.

 

If you’ve made this far you might like to indulge in a little light relief – in a kind of, if I don’t laugh I will cry kind of a way – here’s my favourite selection of comments I have heard this summer….

 

‘You’re a bit big for that buggy’ (Random stranger in pharmacy) – that’s right GG up you get and walk!

‘The rest of us have to get our own kids to school’ (SEN transport team) – uh huh, not quite the same though is it, oh and BTW I get my other kids to school all on my own, grrrr.

‘But all kids have meltdowns – are you sure she isn’t doing it for attention’ (Another mum) – that’s right, in order to get attention my daughter needs to pull out her own hair…..

‘Have you tried the naughty step when she is in a meltdown?’ (Well meaning friend) – now why didn’t I think of that, next time GG is out of control clawing to get out of my grasp, I will sit her on the naughty step, that will fix it right?

‘Honestly – my (neurotypical) daughter is just like that’ (A less known parent) – no, really, just no.

‘So how are you coping Mum? It’s important to look after yourself’ ‘(GP) – silent screaming in my head as no practical help is offered.

 

Needless to say it has been a summer of wine, a ‘few’ G&Ts and a whole load of chocolate J

 

Dear Mrs May….

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Dear Mrs May…..Firstly I would like to extend my congratulations on your appointment as Prime Minister. I am of course aware of the significant challenge you are now facing in leading the UK through the separation process from the EU.

I am contacting you now, to ask that as part of this separation process, that the relatively small –  but very important – rare disease and undiagnosed community are considered.

I am the mother of a child with an undiagnosed genetic condition – one of 6000 unique children  born every year. There are many more diagnosed with rare diseases. The EU has made rare disease a strategic health priority, and its’ influence in this area has been significant.

You may already be aware that the UK is the centre for genetic research for rare diseases and I can only assume that we will lose this status in due course. These genetic research programmes are the hope we have for a future diagnosis –  which is our only chance of a prognosis, potential treatment and maybe prevention in future generations.

There is a high level of anxiety in the disability community, that is amplified in the rare disease and undiagnosed community, as we face the possibility of losing the significant EU investment in this field. For many of our community, we fear there will simply be too few affected patients in the UK to justify the investment required.

The key benefits of the EU focus in this area to date are:

  • Collaboration across borders and critical mass for an otherwise small population
  • Shared skills, resources and information – including access to niche experts across all countries
  • Research funding (otherwise cost prohibitive)
  • Medicine authorisation across the EU (otherwise cost prohibitive)
  • Innovation and knowledge transfer permitted by European Directives
  • Health benefits for those in the rare / undiagnosed community

I appreciate it is too early to begin to understand the full implications of Brexit. However if consideration can be given to protecting some of the critical work in this area, it would be of significant benefit to this community.

I, and many others, sincerely hope that you will give this full and proper consideration.

 

 

An Ode to a Special Dad

He’s the one she calls for, the Daddy she adores,

The one that she runs to, the minute she hears the door,

Daddy is her hero, he makes everything ok,

When he’s home, we’re altogether, she likes it best that way.

It’s not an easy job being Daddy to any child really,

But when they’re extra special, it becomes even more tricky,

The Dad is often the forgotten one, no-one ever thinks to ask…

How are you feeling? Coping? You always maintain your mask.

Behind the scenes you are vital, the one who holds us all together,

You’re the voice of reason, always there when I’m at the end of my tether,

You’re the one who calms us, makes it ok to just be,

But equally the Daddy who will fight every battle for his family.

How many times I catch you, that adoring look in your eyes,

So torn, so incredibly proud – holding back tears, trying not to cry,

Though she can’t quite say ‘Daddy’ – it gets muddled with her ‘blankie’…

It is with you, her hero, that GG is most happy.