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

 

1. 

I am aware that this is an emotive and challenging subject and I may regret writing this post. However,  there is limited transparency about the impact of an exit from the EU  – probably, because no-one can really know. With a couple of weeks to go until the EU referendum, I am disappointed at the lack of clarity and scaremongering both generally, and in the disability community, from both the leave and remain campaigns. I have also struggled to understand the role of the EU in rare disease which in our case, with GG remaining undiagnosed, is particularly important.

I am no expert on this topic – this is simply a summation of the information I understand to be true, combined with a few of my own views.

So here goes….

WILL PROTECTION IN LAW REDUCE FOR THOSE WITH DISABILITIES?

This is tricky, technically our laws are domestic and not European, however as a member of the EU we have to comply with European Directives. In theory UK law does not change  if we vote leave, however the question is to what extent does the EU provide an extra layer of protection that stops the UK Government from weakening those laws.

Recent legislation including the Equality Act 2010 (which replaced the Disability Discrimination Act) is derived from European Directives. It is highly unlikely that these would change in the short term, in fact they could remain forever. However, being outside of the EU would give the Government the opportunity to move away from the principles established, and future UK law could move in a different direction. I want to say that I don’t think that would happen, but given recent cuts to basic services for the disabled, it is entirely possible that over time legal protection could diminish.

An important clarification is that the European Court of Justice and the Human Rights Act do not form part of the EU. The European Convention of Human Rights includes both non EU and EU countries, which means that leaving the EU does not mean abandoning these. The European Court of Justice decisions to date would remain valid in UK law, however it could change with time if the UK Government decided to.

In summary. probably not much will change in the short term and maybe not even longer term. However my instinct is that we are safer staying in – my experience is telling me that the EU is more likely to preserve and extend protections for the disabled, given their track record on social reform, than relying on the current UK Government.

WILL THERE BE FURTHER CUTS TO SERVICES FOR THE DISABLED?

In the short term there is no question that the uncertainty of a leave vote will cause an economic dip – the only thing both sides agree on. Whether this will be a full on recession or a short lived dip is impossible to know. Maybe in the long term, economically it will be better, maybe not.

One thing is sure – if the result on 23^rd June is an out, we will see an immediate negative impact on the economy and I ask you this – can we stand by as there are more cuts to disability and carers allowances? Can we see more special needs schools fundraising for vital basic equipment no longer funded? Can we allow more parents to have to fight for the statutory provisions in ECH plans which Local Authorities and Care Commissioning Groups simply do not have the funds to provide? Can we take anything more away from the NHS? Can the undiagnosed community cope with an even poorer level of co-ordination of care? The answer has to be a no.

If I hear one more argument that Norway has fabulous health and public services and therefore ‘out’ is best, I will explode. The reason Norway has a fabulous level of service provision is simple. They pay on average 42% of all income in tax. They respect the fact that paying tax protects them and others, and evens out the imbalances in society, ensuring everyone has a good quality of life. We however live in a land where even our Prime Minister who has loads of money, dodged inheritance tax. A paltry £40k in his world – another teacher in a special needs school in my head. Fundamentally our culture is broken at the top and that is why damaging decisions on services are allowed to be made.

You only have to read the newspapers to know that cuts made over the past half a decade have disadvantaged the disabled more than most – 19 times more than the general public according to the UK Centre for Welfare Reform. Outsourcing of the NHS bit by bit, the Southern Healthcare scandals, the high level of avoidable epilepsy deaths – none of these is attributable to the EU but a further economic hit will increase the occurrence rates.

The undiagnosed community already suffer from disconnected and unco-ordinated services, the fact that we do not fit in a box makes it harder to access care and support. Further cuts will only make this harder for those lacking a diagnosis. Read here to find out more – Out of the Box

The other factor to consider is the widely debated impact of ongoing EU migration. A high proportion of EU migrants are working, fulfilling critical roles in our country and keeping our economy standing – a very low proportion are claiming benefits according to the DWP – although precise figures are unknown. This means that EU migrants are contributing through tax and NI so in theory the additional people are funding additional services. The reality is that money is being sucked up elsewhere and not invested in expanding the services to support this wider population. Migrants are easy to blame for all ills, personally I do not buy it.

Another hit to the economy, regardless of short or long term will lead to further cuts to services for the disabled. More cuts leads to less help, services that are stretched to breaking point and ultimately more deaths – short term or otherwise this is a worrying prospect.

WHAT COULD LEAVING THE EU MEAN FOR RARE DISEASE RESEARCH AND THE FUTURE HOPE FOR THE UNDIAGNOSED COMMUNITY?

This is where I become completely convinced that ‘in’ is best. GG like 6000 other children born every year without a diagnosis, will cease to benefit from a wide variety of EU mechanisms that are furthering rare disease research and ultimately leading to that much needed diagnosis.

The EU incentivises member states to undertake research providing funding to Universities, health care providers and private organisations working in this field. Under the umbrella of the EU, the UK is working across borders to research, develop and find treatments for rare diseases. The EU has listed rare disease as one of 23 health priorities stating that there is a need to incentivise and promote work in this area, which is otherwise cost prohibitive to individual member states and pharmaceuticals. The European Medicine Agency is based in London and its work helps to ensure that the UK is towards the top of the list for investment in drugs.

The framework of the EU allows researchers and policy makers to share data which would not otherwise be possible. It is only through sharing data that the patterns and trends which allow the identification of rare diseases – the diagnosis so many await. In some cases cross border treatments are made possible through the EUs work

The UK plays a key role in genetic and rare disease research. This work may not completely stop if we leave the EU however it will lose EU funding, the opportunities to collaborate and the input of all member states has to be better than just one. Our ability to influence rare disease policy and benefit from the EU approach will significantly diminish.

For GG, this would be catastrophic to step away from the one thing that gives us hope of a diagnosis, a prognosis and possible future interventions to improve quality of life.

THE IMPACT ON MOBILITY IN THE EU:

On every special needs parent forum, there are true and very distressing tales of disabled young adults, at the age of 18 years being moved away from their families. The law in the UK (and not the rest of the EU as far as I understand) currently means that at the point of becoming an adult, the family who have cared for their disabled relative since birth, are in the hands of social services often unfamiliar with the young person’s situation. Where the disabled young person concerned can communicate their wishes, this is also at times over looked.

Leaving the EU means that the ability for us as a family to leave the UK and move to another EU country, to ensure that GG can remain with us – for as long as we are able to look after her and for as long as she wishes – becomes more complicated. Probably cost prohibitive.

A COUPLE OF FINAL POINTS (NOT DISABILITY FOCUSSED):

• Memories of the two world wars…..

I will not be alone in recalling the horrors of stories passed on from grandparents – this was not so long ago. I personally have always felt the EU provides a comfort blanket against a repeat of the horrors of the first half of the 20^th century. An institution which was able to forgive, forget and rebuild, with collaboration at its’ core. Today’s threats come from both further afield and from within, and I cannot understand how standing alone against terrorism can possibly be better than standing together. Imagining the UK in the same situation as Paris and Brussels, I would like to think that unity will conquer.

• The prospect of Donald Trump as US President….

The man is clearly bigoted against anyone who is not an able bodied, white, American male. I personally did not believe he stood a chance until New York voted for Trump – one of the most vibrant, diverse cities in the world and they chose him. The prospect of exit from the EU equating to closer ties to a US run by Trump is, in my view, one of the strongest arguments for voting in.

TO CONCLUDE:

Well done if you have read this far and thanks for sticking with it. I do not profess to have all the answers, however for the elements that are most important to the undiagnosed and wider disabled community, I cannot help but feel that remaining with the EU is best and at the end of the day what’s best for GG will always get my vote.