The Guilt of Respite

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For the first time today, I used the 5 hours that GG was in holiday club to go out with my other two children (and not for me to work). We were all excited  – although tried to not show that in front of GG. It was a 5 precious hours that we chose to spend outdoors, exploring the beautiful local countryside and walking the puppies. It was a glorious day and we had a great time.

In all honesty, I did not miss the screeching, the stressing over whether GG will drink and her refusal to use an unfamiliar toilet. Hauling the buggy in and out of the car and not being able to get in and out of the tea shop were welcome upsides.

I absolutely loved being able to dawdle and explore, GG hates being still in her buggy so stopping is never an option. We visited the Birds of Prey Centre where GG would have struggled with the noise. We enjoyed the simple pleasure of being able to run through the woods with the dogs, and for me being able to watch the others on the climbing frame, without having to join in to help GG around.

GG on the other hand had a lovely day out. Along with some of her school friends, she came home full of smiles, an empty lunchbox and keen to go back again tomorrow.

Perfect you would think so why do I feel so guilty. It is because I missed GG’s smile as much as I missed her screeches. I missed her giggles as much as I missed the inevitable tears. I missed the simple pleasure GG takes in a cheese sandwich whilst my others devoured lunch without a thought.

It felt like we were incomplete as much as it felt a relief to have a fun day without the additional challenges. Every photo I took was missing something. Perhaps in time I will come to accept this new phase in our lives. I know how much we all need some time out, GG’s siblings in particular, but I wish with all my heart that it didn’t have to be like this.

2017 GG’s Best Year Yet!

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The past year has been a whirlwind  with significant changes in our lives and for GG it has, without doubt, been her best year yet.

The Big Move…

The big news of course was the house move, 200 miles from all that GG had ever known, to our new life in the country. The move has proven to be the best thing we could have done. We have the space for all that GG benefits from – a ball pool in her Peppa Pig bedroom, enough room to (clumsily) push her baby’s pushchair around the house and space to play away from her noisy younger brother. The outdoor space is even better and the investment in a sunken trampoline that GG can access without support has given her a new level of freedom.

The New School….

With the move has come a new school where GG has settled incredibly well. Described as the ‘mother hen’ in her classroom, GG has developed friendships and has made progress beyond our expectations. Her annual review started with ‘What do we like and admire about GG’ – it was an uplifting and positive experience, no longer fighting for her every need but surrounded by a team who could not be more helpful.

GG’s Busy Social Life….

The social opportunities have expanded as well – we have managed to replicate horse riding, swimming and Brownies and GG has adapted well. The addition of a local boccia group which her siblings join in too represents truly inclusive sports. Holiday club options have also worked well with GG happy to get on the bus with her packed lunch. Our precious girl has such a busy social calendar!

GG’s Love of Animals….

We have extended our repertoire of animals – GG still loves her daily Guinea Pig cuddles and is as excited as the day we first had them. The addition of an outdoor cat has had limited impact, however the 2 puppies we bought home in November have enhanced GG’s life beyond all of our expectations. There is no longer a fight over getting dressed in the morning as she is so keen to make it downstairs to see the ‘woofs’. The smile on her face as they welcome her makes all of the extra work worthwhile.

On the Health Front…

Medically 2017 was a relatively stable year, discharged from cardiology, better results from the eye tests, only a couple of UTIs and a subsequent scan showing no significant issues. Appointments with many other teams but none too worrying. Most of all GG’s epilepsy has improved – it is still there and we continue to sleep with one eye on her video monitor – however we have even removed one of her medications with no impact. We could not be more delighted and we hope we will see an improvement in concentration and behaviours as a result.

GG’s Major Achievements…

In addition to taking major changes in her stride throughout the year, in the last 2 months of 2017, GG had her art work displayed at a local show, coped with going on stage to receive donations on behalf of her holiday club, and most importantly leapt an astonishing 1 year and 4 months forward on the assessment of the level of her understanding. GG has also started to sing which delights her and all those around her. There is no doubt that 2017 was GG’s best year yet.

As we move into 2018….

We are so excited about what GG can achieve. Our focus on improving some of the challenging behaviours will continue. The EHCP transfer will no doubt prove a challenge, and just maybe 2018 will the year of the diagnosis for our gorgeous SWAN as we await results from the 100,000 Genomes study. Let’s hope 2018 will prove to be even better.

Five Things I Would Change

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Five Things I Would Change…..

1. This maybe controversial as I know many parents who would not change their child for the world. I would not be without GG for the world, she and her siblings are my everything. However I would fix GG if I could. The core of GG, would 100% still be her, she has a very strong personality! However I would take away the pain and challenges she faces every day.

2. The attitude of others, towards those of us trying to lead a typical family life with a disabled child. It’s not easy, so you staring and tut-ting is really not helping. We should be able to go out for the day or enjoy a meal – offer help instead of judgement.

3. The assumption that parents of children with disabilities do not, or should not work. We are a growing army of working parent carers, it is good for us, good for society and definitely good for our children when we can make it work. However it does mean that I am not at your beck and call, for appointments and I cannot conjure up a fancy dress costume in 48 hours!

4. The crazy inconsistencies between provision in different local authorities / NHS Trusts. It is a postcode lottery as to whether you have access to, or qualify for, much needed support and to not have a standard offering to children with disabilities is beyond ridiculous.

5. Professionals treating us like amateurs when we are experts in our children. We are their voice so please listen and treat us with respect.

 

 

A Letter to the Prime Minister

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Dear Mrs May,

Twelve months ago I wrote to you regarding Brexit and how I hoped that you would protect funding around genetic research, which is so important to those of us who have or care for someone with an undiagnosed or rare disease.  https://theworldofgorgeousgrace.com/2016/07/05/dear-mrs-may

I did receive a generic response from your office, which did not give me a great deal of comfort.

Whilst this remains a concern, I have to be honest that I have worse fears for the future of the country, given what I have seen the Conservative Government do over the past year. Disabled people seem to have dropped off your radar (maybe even pushed) and I want you to put them back where they belong – on an equal footing with everyone else.

Disabled people should not be dying because of inadequate care. Disabled people should not be dying because you have significantly reduced their benefits. Disabled children should not be excluded from school because of insufficient funding. Disabled people should not be suffering unnecessarily due to the state of the NHS. Disabled should not be subjected to undignified questioning by under qualified people because you want to save a few pounds. I could go on but I think you get the point.

I totally understand that there is less money to go around but you do have choices Mrs May. Businesses must be made to pay the tax they owe in this country. Tax avoidance schemes must be eliminated. An extra penny on the pound for higher rate tax payers would not impact their lifestyles at all. Simply joining up services and reducing bureaucracy would allow money to be redirected into frontline services. There are many choices which would not result in some of the neediest people in our society being further isolated by selfish and needless policies.

I know we have 4 years before another election and somehow we have to find a way to muddle through, survive for some of us. However I think you know that the tide is turning, the reality of cuts in the wrong places is becoming more visible. If you don’t care enough to make a change for disabled people then think about yourself – do you really want the reputation that causing unnecessary suffering to disabled people will bring? I hope you are not that heartless.

Yours sincerely,

GG’s Mum

 

 

 

My Proudest Moment(s)

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When I think of moments of pride with my other children, my mind immediately jumps to a milestone achieved – starting to crawl, their first word, learning to write their name or receiving an award for ‘empathy beyond their years’ – a common trait in siblings of children with special needs.

With GG it is difficult to pinpoint those moments in a ‘first’. I cried with joy the day she took her first steps, but actually I was more proud of the resilience she showed as a baby wearing splints for hours on end to help her muscles develop. I was prouder of her ability to persevere through a demanding daily, physio session for 3 continuous weeks which accelerated her physical development. I was really proud of how she adapted to a specialist walker in the months before she took her first independent steps. The ultimate achievement of a milestone is made up of hundreds of proud moments which reflect GG’s determination.

I am so proud of how hard GG tries to communicate – her attempts to sign, verbalise and use communication aids to make herself heard. Last year was the magical moment when she first verbalised her own name – it’s still not a clear pronunciation, but she knows what she is saying and is still proud as punch to answer the question ‘What is your name?’ It cannot be underestimated how hard she worked for that one small, but hugely significant achievement.

I am incredibly proud of how GG copes when she is unwell and particularly during seizures. GG complains so much less than other children but handles so much more. Awful ear infections that we only know about due to a high temperature, huge bruises or blisters on her feet that we are unaware of at the time, and yet she smiles on through her day. The confusion after a seizure and sheer exhaustion it brings – none of it stops her for long. I could not be prouder of how resilient GG is.

One of the greatest pleasures for us is seeing GG interact with others. GG has social skills well above the expected level for a child with a severe learning disability. From a young age, GG has always loved being the centre of attention and will always seek out the company of others. Watching her try and join in games with her siblings and peers, always a long way behind but cracking on regardless. The one in her classroom who likes to make sure everyone is included, regardless of whether they respond to her. I am so proud of how inclusive GG is and how infectious her happiness can be.

I cannot point at one moment, one achievement as being my proudest but if I had to summarise, then overall I am most proud of GG being true to herself and every day being the best that she can be.

 

 

GG’s Favourite Book

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To be honest, this could be a picture of any Peppa Pig book. This one is a favourite as it has the sound effects, and GG particularly enjoys Grandpa Pigs snoring. We read every day and mostly GG engages but I do wish she would extend her repertoire! One of my favourite parts of the day is a bathed GG, having snuggles and a story before bed.

10 Things you didn’t know about….Challenging Behaviour

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  1. Challenging behaviour is very common amongst children with learning disabilities however it is often difficult for families to talk about it – almost a taboo
  2. Challenging behaviour is usually triggered by anxiety or over-kids-1268694_960_720stimulation caused to the child and this is their way of dealing with it / communicating
  3. It is hard to understand what is causing the anxiety as when upset the child is unlikely to be able to communicate, and it is often not easy to identify the triggers
  4. Children often hold in the challenging behaviours at school resulting in an explosion once they reach home and a safe place to express themselves
  5. Using the usual approaches to challenging behaviours with a child with a learning disability has limited to no impact – telling them off, the naughty step, timeout all tend to add rather than help the situation
  6. Often parents of children with challenging behaviour are left trying to comfort a distraught child with little idea of how to help them
  7. Professionals are often dubious about the challenging behaviour described to them as the child rarely displays the behaviour in their presence
  8. Providing video evidence is heart breaking – a dreadful position to have to film your child whilst in a distressed state in order to show others what they are dealing with
  9. It is absolutely exhausting – emotionally and physically – leaving parents, siblings and other family members with little energy to face the challenges of the day
  10. The support for those with children with challenging behaviours is very limited, especially for pre-teens leaving parents and families unsupported and isolated.

 

 

Ten things you didn’t know about….Being Undiagnosed

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  1. It is surprisingly common with c.6000 children born every year with no underlying identified diagnosis – most of whom will have a genetic disorder of some description
  2. This number will drop as the amazing progress in genetics advances with many of us enrolled on studies such as the Deciphering Development Delay or 100,000 Genomes projects
  3. However a diagnosis for GG would now be so rare that it will likely have little meaning in the short term in terms of giving a prognosis
  4. Despite the volumes of undiagnosed children – as high as 100,000 in the UK alone – many professionals are still unaware that this is an issue
  5. In the early years we are often grouped under a generic ‘Global Development Delay’ catch up – even we thought this was a diagnosis to start with but in fact it turns out to be a name given to those with no other label
  6. It is incredibly isolating being the parent of a disabled child, being the parent of a disabled child minus a diagnosis can be even more lonely
  7. We can fall between the cracks – no diagnosis means no pathway and therefore services can be hugely disconnected and difficult to navigate
  8. There is never enough room on the vast array of forms to complete the section titled ‘medical condition’ – our unique array of medical and developmental issues will often fill a page not just a small box
  9. No diagnosis means no prognosis which means no limitations on what our children can achieve – medical professionals will offer a view but our children are fabulously expert in proving them wrong!
  10. We do have our own support network – Swan UK (Syndromes without a name) which for most of us becomes like an extended family, a safe place to go (virtually) and usually someone will have been where you are.

 

 

The Name Behind the Blog

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The World of Gorgeous Grace came about after I was writing for myself, finding it therapeutic but feeling like I wasn’t making a difference to the challenges we faced. I wanted to share our experiences and educate others, especially around being undiagnosed and the additional issues that this presented (More info on this can be found here:https://theworldofgorgeousgrace.com/2016/04/27/welcome-to-no-mans-land-undiagnosed/)

However, I wasn’t (and still am not) comfortable with sharing details of my daughter and our family with the wider world. A personal decision, but instinctively it has never felt right. Inevitably this made choosing a name a little more challenging.

Grace is a name that has always been special to me – my Grandma was known, although not registered, as Grace and I love the meaning of the word – wanting my blog to reflect that we try and take everything in the most positive way. My daughter is of course 100% gorgeous, her smile, the way her eyes light up, her giggle – everyone who meets her has described her as adorable or gorgeous – ‘Adorable Grace’ didn’t have quite the same ring to it as ‘Gorgeous Grace’ and therein the blog name was born.

Originally everything I wrote was rhyming – this was never intentional but just how my thoughts formed in the early days. I suspect a result of the amount of made up rhymes I sang to both GG and her younger brother – as much to keep me calm as them. Here’s the first blog I published as an example: https://theworldofgorgeousgrace.com/2014/10/08/introducing-gorgeous-grace-or-gg-for-short/. The blog has evolved since then and the topics I cover within the SEND world are varied.

I have had moments of questioning the name choice. I do challenge the anonymity decision from time to time – it makes Instagram and visuals quite tough, I have almost outed us by careless blogging at times (!) and I do worry people think I am hiding behind anonymity. However it still feels like the right decision and doesn’t seem to stop people from engaging with the blog. I have had a few inappropriate questions – sadly in our society the use of a woman’s name and the word ‘gorgeous’ can attract a certain clientele….these are fortunately few and far between, and have provided a little bit of humour, along the way.

The World of Gorgeous Grace has become part of my life now and I hope it will continue to be for many years to come. Many thanks to all those who have supported me to get this far.