When personal experience shapes your professional world, magical things can occur

When I gave birth to my second child 7 years ago, I had no idea how she would shape the person I am today, from building my confidence and passion, to shaping my career path and opening doors to the most rewarding work I have ever done.

Our daughter Isla was born with Down Syndrome. A total surprise to us, and for a few months I think we were rather numb and just ‘got on with it’. We already had a two year old daughter after all, plus Isla had medical needs which needed around the clock attention. Such is my nature (as I’ve now realised), I also had the biggest pile of reading material on DS. You fast realise that, whilst you meet many ‘experts’ in DS, absolutely no-one beats yourself as the expert in your child and how their condition affects them.

By the time Isla was 2.5 years old, I found myself drawn into the first new career path shaped by her. Her wonderful special need’s nursery was facing closure, due to spiralling costs. This nursery had been a life line to my family and had shown Isla (and us) warmth, love, support, friendship and development opportunities. While Isla was coming to the end of her time there, the thought that this nursery wouldn’t be available to future children, was something hard to bear.

Against all reason (I now had a newborn baby boy, a 2.5 year old disabled child and a 4 year old plus our house was on the market), I took on the task of organising a parent led task force to save the nursery.

"When you find something that truly motivates you, you find and learn new skills, courage, energy and passion."

I found myself approaching businesses for support, undertaking fundraising, event planning and management, managing press, public speaking, including a stint on the local BBC news. Of course, I was able to use my existing marketing skills, which certainly helped when presenting a strategic plan to the Board of Trustees, but my skills base and confidence just grew and grew.

The energy that this parent-led activity generated was incredible and ultimately catching, within weeks, our Trustees were working with our local councils to access and secure ongoing funding to ensure the nursery never faced this situation again. 5 and a half years on and I’m thrilled to say that the nursery is open, full, thriving and now open 4 days a week (instead of the original 2 days).

I also continue to host an annual Vintage Tea Party fundraiser for them, plus this year my now 9 year old daughter worked with her friends to host their own Kid’s Vintage Tea Party (By Kids For Kids). They were incredible and raised over £800 in 2 hours. I can’t tell you how proud I am.

“There is nothing more motivating than personal passion. If you can bring that into your professional life, you can create true meaning in your ‘everyday’ and in the lives you touch.”

Following the nursery work, my next opportunity arrived. An invitation to join the Board of Trustees. Previously I would never have felt worthy of this, but as I had learned through my nursery work;

“When something you truly care about is threatened, and you realise you may be the only person able to instigate the change needed, you stop being shy, stop hiding, stop doubting yourself and you go for it.”

What a gift I had been given.

I only sat on the Board for 12 months, as I found it impossible to sustain the level of time commitment it truly needed, plus my presence on the Board had fortuitously led to my next career opportunity and a job, which was a further commitment on my time. I hope to return one day.

While all of this had been going on, Isla had been suffering a severe regression. She lost her speech, her signing, her eye contact and her ability to play. At the same time, she developed more and more new habits including flapping, spinning and licking. After an incredibly painful and heartbreaking few years, Isla was diagnosed with autism. We had ‘lost’ our daughter and got a new one. At least that’s how it felt. I put all my DS books in the loft and my bedside reading was now everything and anything on Autism.

It was like starting all over again, and I can’t pretend it didn’t break us, but….

“See everything in life as an opportunity. See the gift it brings. Take a moment to absorb news, regain your perspective and move forward.”

That’s a quote I don’t make lightly or quickly. Isla has been diagnosed for about 2.5 years now, and I’m probably now only just about starting to accept ours and her ‘loss’. The opportunity Isla’s autism has presented to us is vast however, from new friends, to more empathy and understanding of yet more disabilities, to the learning of a whole new communication system (we now use picture exchange), to taking far greater care over the food we eat, to appreciating the beauty in small but precious moments such as when Isla gives you incredible eye contact or one of her heart melting smiles. The list goes on.

Don’t be fooled though. Autism is not easy. But – it’s here, it’s part of Isla, and for all our sakes, we must find the positives and flourish.

Isla’s autism also led me to Mindfulness, which I credit largely with my ability in starting to see the gift in everything more and more. I’m still a novice, so it’s not all wonderful. Of course it isn’t. I’m only human. But, Mindfulness helps me get back on track. It’s also a practice I’m using more and more with my other children. I really see Mindfulness as a gift to all. Working with Claire at the Centre of Wellbeing in Sawbridgeworth we were able to set up a weekly Mindfulness class specifically for parents of children with additional needs. It has been an utterly fantastic experience offering so much support to all who attend.

The most unlikely gift from Isla’s autism however, is how it led me to my current job. Peter at O3e approached the Board of Trustees (whilst I was there), asking for ideas on products for children with disabilities. Isla’s autism had inspired me to create sensory walls for her in her bedroom and playroom. Sensory Processing Disorder is commonplace with autism, and Isla gets real pleasure and her sensory needs met from tactile materials, lights, sounds, resonance and so on. My sensory walls were rather primitive, but I harboured a bigger dream to create something much better. I shared this idea with Peter, and so our conversations started.

I now work with Peter on his marketing and together we have developed a truly interesting and I think, inspiring, team work challenge. We called it ‘Make Sense’, and it pulls on your creative skills to build a beautiful piece of sensory artwork for children with learning disabilities. I think you’ll agree that it really does ‘Make Sense’!

All inspired by my wonderful daughter.

Eggshells and Empathy - Mind your step

I came across the idea of eggshells and empathy, when I was asked to write a blog piece on love, from our family's perspective. Our children are (as all children are) so, so different, with different disabilities, personalities, challenges, progressions, regressions - everything. We too as parents, are all very different individuals who react in completely different ways to each situation presented to us. If we turn our back on our child when they're born with a disability does that make us a bad person? Of course not - initial reactions are just that - we have no control over them. A lightening bolt has hit - for some this has an immediate effect, for others like myself, it has a numbing and 'get on with it' effect - a slow burn that finally erupts a few months down the line, when life as you know it implodes around you. Does it mean any of us don't love our children? Of course not!!!! We're dealing with a shock, an adjustment, some sadness, sometimes a sense of grief. It's different for everyone, and no matter how much you have in common - no two situations are ever the same. Please never judge.

When you write a special needs blog, you tread carefully, no matter what the topic - as if on eggshells, because you only ever want to offer empathy and support, but fear you may break one of those eggshells when you celebrate your child's latest achievement - knowing a friend's child will never achieve the same goal......, or talk about a fight you had and won to get a service (a fight someone else lost of couldn't face taking on). The alternative is to stay silent - but that's no solution. Silence leads to isolation, which is something I would never recommend - despite how tempting it can be at times.

There are days when Facebook will announce a child's achievement and it can stab right into my heart - but that doesn't mean I don't adore to see each child's hard earned achievements and want to celebrate with their parents. You just accept that some days, those bad days, the ones where you've had no sleep and your child has had epic bowel movements, no eye contact and spent the day spinning - on those days, it can hurt. Then you suck it all up and carry on - positivity beaming from your pours. It's not an act - you genuinely feel positive and genuinely are thrilled at all achievements big or small - it's just that in the face of so many extreme challenges, it can all come crashing down occasionally.

So onwards and upwards with that empathy and mind out for those eggshells.

Author: Claire Cook
www.brightfuturemarketing.co.uk

So who has been to a tribunal?

I sadly suspect that this will be every SEN parent at some point in their lives, as we fight for access to services our children need and are entitled to.

Call me cynical but when we were refused higher rate mobility and then refused again at appeal, I couldn't help but think that they do this, just to see how many people won't bother to push it - and thereby save themselves some money - and meet their shrinking budgets...... When I got to the tribunal, the representative for the Department of Work and Pensions opened the proceedings saying that clearly our daughter was entitled to Higher rate mobility based on mental capacity (or rather lack thereof). He apologised for the stress this must have put us under. While I'm grateful that he said all this, I was left speechless that such an apparently 'clear cut' case had ended up at tribunal.

So either the decision makers at DWP are incompetent or there is something more sinister going on....

And what happens to the families who are 'on the edge' of coping or don't have the skills to push their case? These are arguably the most vulnerable and the system is completely and utterly failing them - and their children.

Perhaps the government motto for accessing services and benefits is or rather should be "Make it tricky enough and we'll save some cash"

There is a fine but important line between being thorough in assessing needs and deliberately over-complicating things to put people off....

My favourite is that every 5 years or so, I have to fill in a heap of paperwork confirming my daughter still has Down Syndrome and Autism.......... FFS!!!

Anyway, my top tip should you find yourself going up against a decision? Contact a charity for free legal advice. For us, the Down Syndrome Association were amazing (the guy from the DWP complimented their support work).

Good luck and stay strong x

Bitter Sweet and a blogger's responsibility

I've been quiet. My absence has been due to an inner turmoil about where to go with this blog and what responsibility I have.

On the one hand I want to be positive, promote all the good bits and talk about all my child's hard earned achievements.

On the other hand, I want to truly get people to understand how complex my beautiful daughter is and the daily challenges and future worries she brings.

And on my other other hand (didn't you know us parents of SEN kids, get given extra pairs of hands to help with all the extra chaos ;o)!), I want to provide optimism for other parents with dual diagnosed kiddies - I worry that I can't always do that, so sometimes opt for empathy instead.

The last worry about ensuring I provide hope but not false hope, is my biggest fear. I sometimes think 'bitter sweet' is a good term for life with Little I.

She brings such joy with her smiles and giggles, she brings glimmers of hope when she spontaneously signs and sometimes tries to say the odd word, but then it is lost..... leaving an underlying sense of sadness for those around her.

Then there are the practical considerations. My child has no safety awareness and a very high pain threshold with sensory seeking tendencies that can lead to dangerous situations. I joke about quick reflexes and constant 'fight' mode, but in all honesty - it's sometimes just plain exhausting.

Take comfort. I take comfort in the fact that Little I, for the most part, is a happy, smiley and despite of her autism 'engaged'. That said, her engagement is still vastly different to a child without autism - but you find joy in these small mercies.

Of course, every disability is different and for some children a life with work opportunities and independent living is totally achievable. Public perception needs to be continually challenged, to ensure these kiddies have the best opportunities.

Then there are kiddies like mine, independent living will never be an option, but keeping her safe, happy, engaged and thriving in her own way, is just as important as it is for any other person.

So, how do we retain our hope, energy, drive and optimism against the sadness, exhaustion and worries for the future?

........... answers on a postcard..........

Nothing lasts forever/ Extreme Parenting for Adrenaline Junkies

"Nothing lasts forever" This mantra has got me through a lot - with my nuero-typical children too, to some degree.

Of course, this applies to the good stuff, as well as the bad.....

My kiddies won't want to hold my hand forever, but also (I hope) they won't argue with me over what's for dinner for evermore...... They won't always want me to cuddle them, but then they won't always need me during the night......

With Little I, I had a sharp reminder of my 'nothing lasts forever' mantra this week. She's been poorly,  it's only a cold but she doesn't weather them well. What I realised however, was that it had been a 'long' time ('long' is a relative term) since her previous illness. There were many years when it was the norm for Little I to be battling a cold or chest infection, me on a bit of elastic to the doctors, countless antibiotics and frequent visits to A&E and stays on the ward. The latest illness has completely thrown us back into full-on nocturnal living. I was cast back very quickly to those days and relived my relief that those days are now mostly history. Of course new challenges come along and I don't suppose sleep will ever be great, but you embrace every new challenge, adapt and move forward.

To coin an annoying song.

I get knocked down
But I get up again
You're never going to keep me down


Albeit with love and support, some wine and if we're lucky, some social care respite (but don't get me started on that fast).

Hold on in there guys. This is extreme parenting. Get used to running on adrenaline at the tough times, and accept that these tough times can last some time........

Corporate Motherhood (with SEN)

Corporate Motherhood (with SEN)

Stepping from a Professional Job into Motherhood and then chucking in some SEN....... (Special Education Needs if you're not familiar with the latest acronym!)

BAU used to be daily defined work related tasks that didn't test your sanity, cleanliness or patience. Now it is school runs, packed lunches, homework, school paperwork, unfathomable sibling arguments, terrible sleep, hospital appointments, speech therapy, play therapy, occupational therapy, physical therapy, anyothertherapy, and lots of poo.

KSOR used to be the 'must do' business basics to keep things ticking over. These may have been repetitious but again generally never challenged your sanity, cleanliness or patience. Now KSOR is emptying and reloading the dishwasher at least 3 times per day, wiping lick marks off of all windows, TV screens and glass, clearing up small piles of reflux vomit that I stumble across on the floor, picking up numerous random objects from the floor (usually shiny things - cheese graters, sieves, pan lids etc), oh and lots and lots and lots and lots of clothes washing, drying and putting away. And - not to be forgotten - lots and lots of Caffeine for Mum!!!!!

Reports: I still deal with facts and figures - oh yes - plenty...... but now it is 'how many times do you have to hand a spoon back to your child at meal-times in a 24 hour period?' (really!), 'how many meters can your child walk without feeling discomfort?', 'How many words or signs does your child have?', 'how many times per night do you need to re-settle your child in bed?', 'how many times do you wipe their nose?', 'Is your child continent?' and so on and so on - generally lots of reports on things your child can't do and what help they need. So uplifting, huh?!

Negotiations: These used to result in business or personal benefit. Now? They involve whose turn is it on the iPad, how many chocolate biscuits are acceptable, how many more minutes before bedtime, what club you'll take away if the bedroom isn't tidied and so on. These negotiators are far more wearing than those of the boardroom, & typically I feel less successful (for the adult!).

And Business Development?? Well - researching therapies, convincing your GP & paediatrician of said new therapies, laminating stuff, visual time-tables, play-dates, introducing new things on trial and error basis (diet, therapy, supplements etc) & some more laminating just for the fun of it.

Would I change it? No - well - maybe a little! Heres to Corporate Motherhood with a splash (or rather big fat dollop) of SEN.

I do sometimes wonder how I used to fill my days......?

Epsom Salt - Natural Wonder / Poo glorious Poo

Occasionally you come across something that is soooooo beneficial to you and your family, that you want to educate every single person you meet - in the street, the school run, the bus (should I actually get one!), the toilet queue - everyone, everywhere!

I have to thank two amazing and inspirational ladies (hopefully they know who they are), for putting me onto Epsom Salts for a million different reasons! Why oh why did I not act sooner! This is the stuff of dreams. Its therapeutic and medicinal properties are extensive. I'm writing this blog, as the penny has just officially dropped in my worn out old brain. We have been giving Little I Epsom Salt baths almost every day for the last month and I have just made the connection with the fact that I have finally and successfully dramatically reduced Little I's constipation medicine.

She was sat chilling out in her bath tonight (hour and a half), when that old penny started to drop, so I grabbed my phone and started googling (is that an actual verb these days?). There it was in black and white - on top of the hundreds of other benefits of Epsom Salts, it clearly helps with constipation! It is absorbed into the skin and somehow encourages the bowel to absorb more water, which softens the stools and makes them easier to pass! Bingo!

There are heaps of other benefits - I have now prescribed Epsom baths to each family member for various ailments from insomnia to eczema, to more constipation to joint ache.

Epsom salts aren't actually a salt by the way - they're magnesium - a mineral many of us are lacking in.

I am quite literally turning into a granny, with all these old school methods that are working for us - changes to diet, Epsom Salts, essential oils - what's next?

It's only when you make little or no progress (or in our case, regress), using conventional methods, that you open your mind and explore alternatives - such a shame to have wasted so much time.

The only question I'm left asking is..... why on earth GPs aren't prescribing this ahead of movicol, lactulose and many of the other constipation drugs out there.... or instead of anti-inflammatories or steroids for skin issues. Definitely worth exploring nature's gift first. Such a shame.

Get 'googling'!!

Love each other x

PS - I feel I need to say something like ..... I am not a medical professional and can only speak from personal experience! Like me - you should do your own research before diving in - but honestly I can't see there is too much to worry about from having a bath. x