EMPLOY A CARER – WE ARE WORTH IT!

carers week

To employers of all shapes and sizes, all sectors and markets, employing a carer can be a fantastic step for your organisation. Your success is based on good people and that is why you should open your eyes to the potential of employing people in the caring community. It can work for you, I am living proof of that, it just requires a different way of looking at how we work.

Let me tell you a little about me. I am mum to three kids, highly ambitious and was never going to step down in my career when I had a family. Baby no. one arrived and after six months I returned to work, no hassle at all. Then baby no. two arrived and my world turned upside down. GG, my Swan (Syndromes without a Name) remains a conundrum to this day, undiagnosed and nearly 7 years old. Suddenly the tried and tested return to work plan became a mountain to climb.

However, I did it and my employer worked through it with me. 7 years in and I remain in a demanding role, I am valued by the organisation and I manage my caring responsibilities. (I will also point out here that I have a husband, he too does his share, so don’t assume that only mum takes the responsibility).

So how did we, my employer and I, make it work? The answer is flexibility on both sides. I will be totally honest about it, childcare with a disabled child is a nightmare but it is not impossible, hospital appointments are a norm, we have daily therapies to fit in at home, we have to spend more time in school settings than with mainstream children and sometimes our children are hospitalised, and we are unavailable for a period of time. This is the time when we need you most.

I accept this means that you cannot give us sole responsibility for a job that needs a high level of presence. It needs you to think differently. In my role, it works well to have a strong deputy, ready to step in as needed – investing in another employee’s development whilst ensuring business continuity, a win-win situation. I have settled into a working pattern of 3 days a week which allows me to flex my days according to appointments and meetings, but ensuring I have chance in my week to deliver my job to a high standard and with cover in place when I am not there. In reality I am almost always there remotely, frequently taking a quick call or managing emails on a non-working day.

I recognise that I am asking for a lot from an employer and whilst I know I am fortunate to be supported, it is my employer who says they are the lucky ones. I have worked my socks off to demonstrate that I am 100% committed and can make this work. My manager describes me as highly productive, I have no time at home or at work to dither, I get the job done efficiently. Being a carer has taught me a whole host of new skills. A situation that would previously have me in a panic, I deal with in a calm and pragmatic way. When you have watched your child have a seizure, nothing work wise will phase me.

My planning, organisation and negotiation skills have been enhanced beyond recognition – negotiating the early years of the special needs system and the NHS is tough and makes us carers resilient and persistent. I have learnt skills I did not ever consider I would need. I can use sign language, I am a physiotherapist, speech therapist, campaigner, advocate for my child – all of these skills I learnt on my own and fast. Nothing my employer throws at me will phase me, I will find a way to make it happen.

The CV of a carer applying for a job may not be typical of the experience you are looking for but please think beyond the ‘job title’ and look at the skills they have to offer.

I am not alone in being a working carer. My organisation is not the only one to successfully employ carers. However we do remain a minority. Every day I hear carers who are desperate to get back to work – will you give them a chance? I hope so.

What was I thinking? The rookie mistake of a SN parent.

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The meeting

It is 6 weeks since the appointment where my son, just 3 years old, sat playing through (yet another) appointment about GG – this time the educational psychologist. As we were chatting through some of the challenges at home, with the backdrop of Fire Engine noises, I hear a little voice say ‘GG hurts me’. The educational psychologist instantly dropped to the floor and played with him while encouraging him to expand. Yes, GG does play nicely with him – sometimes. Yes, GG can be fun. Yes, GG hurts him. How? Hair pulling, hitting, kicking….every day? Yes. From the mouth of a babe.

I tried so hard to hold it together but inevitably there were tears. There was this amazing little boy, my incredible little boy, who never hits back at his sister – despite holding his own in the nursery play area – describing to a stranger the good and the bad of being a special needs sibling.

The flashbacks

I frequently find myself having flashbacks to that meeting, searching for ways that we can help both GG and her brother to have a more positive relationship. There is no manual for how to support a learning disabled child, engage in meaningful play with a younger sibling who happens to have greater skills.

The ongoing challenge

There are moments of absolute pleasure – a game of hide and seek which leaves both children in fits of giggles. Unfortunately there continue to be lots of lows, occasions where we did not predict the lashing out of a very frustrated child, several potentially serious near misses – a push as we are making our way downstairs or fingers in the eyes. We have tried gates to keep them apart, we have tried never letting them out of our sight but with two mobile children and dinner to make, it’s not possible to be all things to all children. The ‘wiser than her years’ older sister who is so good at predicting and preventing trouble.

There is no doubt that GG adores her brother but he is also a sensory overload nightmare to her. Has anyone tried asking their 3 year old to quieten down because his sister isn’t coping well with noise? I know before I have said it, that my request is futile. Often, neither child is playing up but compatibility is a significant challenge.

 The rookie mistake – what was I thinking!

Then I made the rookie mistake – despite being 6 years into our SN journey. I described the meeting and the words of my little boy at a mainstream toddler group. What was I thinking! The immediate silence, barely masked looks of horror, parents holding their toddlers tight – trying to imagine a world in which they are regularly hurt by a sibling. Then the attempt to normalise our experiences – ‘it’s just normal sibling behaviour’, ‘all siblings fight’, ‘it’s just a phase’. Me wanting to sink through the floor, wondering at what point I lost my senses.

It’s important to speak out

It has taken me 6 weeks to feel able to talk / write about this, I know it is important to share and that I am not alone. However, I should be able to protect my little boy and I should be able to help my little girl to find other ways to express herself. I never stop seeking help and support. Inevitably I still have no report from the educational psychologist meeting but 6 weeks is nothing in my experience. The dream of some professional input from school being a distant lifeline.

I am however attending a workshop in just a couple of weeks time, where I have high hopes of obtaining some professional input, meeting others in a similar situation and hopefully come away with some new tactics. You can find out more here: http://yvonnenewbold.com/childhood-violence-autism-pda-adhd-or-a-learning-disability-conference/

 

Delivering a Diagnosis

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For the 6000+ children a year born with an undiagnosed genetic condition, and their families, a long awaited diagnosis can be both a positive and negative experience. Seeking the elusive unifying diagnosis that often ties together a host of conditions, is a long and difficult journey – combining the hope that diagnosis may bring, with the fear of what it may mean.

In recent months, many families have been receiving a diagnosis through their genetics teams – the DDD study, 100,000 genomes and incredible genetics progress is giving more and more families the answers they seek. However the experience of those on the receiving end is varied, sometimes it is handled brilliantly but occasionally the way news is delivered is not ideal.

Examples of this include a letter landing on the doorstep with news of a diagnosis. Imagine waiting 5+ years for answers and to open a letter in the middle of breakfast with what is, to you, monumental news. On occasion, an invite to an unexpected appointment with the genetics team, with no explanation and weeks away, which results in high levels of tension and anticipation. Even attendance at a routine appointment with news delivered out of the blue.

In our case, we received such a letter and called to ask if it was a significant appointment or a routine review. We were told the latter, arrived at the appointment with 2 children in tow only to find that there was indeed ‘big news’ – this was broken to us whilst we fought to keep GG away from the taps given her obsession with water. As it turns out, the diagnosis found was not significant for GG you can read about the ‘Almost Diagnosis’ here:The ‘Almost’ Diagnosis

So, based on our experience and feedback from others in the SWAN world, here are a few pointers to those delivering news of a diagnosis to families:

  • Please pick up the phone! Let us know that something has been found that may or may not be of significance and that we should meet to discuss
  • Offer an appointment in a timely manner so that we are not waiting weeks and months for really important news
  • Ensure you provide as much information as possible about the diagnosis and what it could mean – we will google it anyway, so we value you being honest about the implications
  • Be clear if there are further steps to confirm the diagnosis and what happens next

We know that the science is fascinating to you and the progress in your field is incredible, but for us, this is about our child, our family, being sensitive to the impact such news can have is really critical. We also recognise you are incredibly busy and not best placed to provide post appointment support, but please do point families in the direction of those that can help – some ideas are below.

Finally, thank you from the bottom of our hearts for working so hard to help us find answers. A diagnosis, no matter how rare, is really important to us and our children.

Further support:

If you come across families that might benefit from extra support you can point them in the direction of:

SWAN UK – www.undiagnosed.co.uk

Unique – http://www.rarechromo.co.uk

Rare disease UK – http://www.raredisease.org.uk

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.

IT’S NOT JUST ANOTHER PTA….

There will be a special needs school near you with a PTA or a School Association that will welcome volunteers with open arms. WE NEED YOU!

 After a year on the equivalent of the PTA at GGs special needs school, I find myself compelled to put pen to paper and try to describe the difference between this and a mainstream PTA.

I have always been an active mum who enjoys playing a role on the various committees associated with my children and their schools. This coming weekend I have managed to rope myself into running a Lego stall at the Spring Fair at my eldest child’s primary. In two weeks I in charge of salad at a school BBQ – a daunting responsibility….!

When I volunteered to join the the special school fundraising committee, I figured that I knew the score. I could attend a few meetings, support a few events and go home with that glowing feeling of having done something useful. Having completed 3 years on a committee for a pre-school where the livelihood of the staff relied on our management skills, I was pretty unphased when asked to take on the role of secretary. Agendas and minutes I can do, plus churning out a few thank you letters as needed –  no issues at all.

The reality however is a world apart from my previous experiences. When you are faced with the decision of providing specialist seating for a child as the Occupational Therapists have run out of funds for this year vs. paying for IPads that will allow a child who cannot otherwise communicate in class to take part in lessons – you find yourself torn and reaching to your own pocket in desperation – in my case usually to find a snotty tissue and a few 5ps.

It is heart wrenching to spend months organising a school Christmas fair, to find that of the 40 odd families at the school, there are several children too ill to attend, parent volunteers dropping out at the last minute due to hospitalisations and in the end you manage to raise a few hundred pounds. I have never been to a meeting where the requests for funding are under several thousands. Just keeping the minibuses on the road costs £4000 per year.

I know I am in danger of stating the obvious here but if you think mainstream school staff are stretched – take a look at the special needs school staff. If you think mainstream parents are time poor – just read some of the many fabulous blogs about being a parent to a child with needs so complex, they attend a special needs school. Add those two together and you are left with the resource that has to fund vital equipment for a school that is desperately under-funded. The maths does not add up and it is soul destroying.

We are extremely fortunate to have occasional funding from the Rotary Club and other local fundraising groups. However when we nominate the special needs school to be charity for the local car rally or sports event, there is always a need to provide a band of volunteers and we simply do not have the numbers.

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So my call to action for anyone with a little spare time on their hands – there will be a special needs school near you that would welcome you with open arms. Be prepared for some tough decisions but nothing matches the sense of satisfaction when you see the kids on the bus, off to their therapies and knowing you helped to make that possible.

Frustration, swearing and tears….

The biggest myth of all – the support for disabled children is good.  Adequate is a massive overstatement. Naively us special needs parents, anticipate that the care will we need is there. At the start – still in shock, we navigate our way through, expecting that at some point it comes together. It hasn’t happened yet.

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For us, physio was the first non-hospital based support we accessed. Not rolling, not sitting, can’t even straighten her legs, we need help. From referral to the first appointment it took 3 months. Let me say that again – 3 months. How old was GG? 6 months old. We spent one third of her precious life waiting for that first appointment.

At last the day arrived, we were optimistic, nervous but hopeful of some support. A 3 month wait and a very hassled and over worked physio spent 30 minutes with our daughter. Let me say that again – 30 minutes. After a 3 month wait. When we will see you again? The desperation in our voices, greater than in the famous song. Perhaps a month, maybe 6 weeks. Keep doing the exercises I showed you. We are flummoxed, novices, lost in a scary world with no help. Turns out that every 6 weeks would have been a dream, 4 times a year has been the average. We spend on average £1500 per year on private physio. Not everyone in the same situation can.

Weight gain is poor, solid food cannot be managed – all her peers on baby led weaning, I frankly want to swear. I do. Appropriately, Speech and language is the referral made (SALT in SEN lingo), they can help with eating. We wait for 2 months. Nothing. We self refer to a private SALT and are seen weekly for 3 months before we get an appointment. We waited 5 months. Our baby was not gaining weight and we waited 5 months for the original appointment.

Next was the Occupational Therapist (OT). We needed stuff – equipment, standing frames, special seats, advice on car seats – the physio said we needed stuff but we had to go back to the consultant for a referral. The referral was made when GG was just 2 years old. The first OT we saw was when she started school at age 4.5 years. By this point we were no longer surprised. Disappointed yes, but not surprised. In the meantime, we got stuff – we bought it from SEN sites, we researched car seats and found one that worked. Alone again.

Alone The common thread to all of these referrals was the lack of diagnosis. Every therapist asking us ‘what is the medical condition?’ – we don’t know. We have been told we may never know but we struggle to believe this. We live in the UK, post 2010, surely we will find out one day soon? More than 5 years into our journey and still no answers. It turns out that no label = more hassle. Professionals do not know how to deal with those who remain undiagnosed. Even at times told,further support will be looked at once a diagnosis is confirmed. We are in limbo.

It is incredible that we have to ask and fight for these services. Incredible that we were not referred at the first point of contact. Incredible that one therapist cannot refer to another and we have to start from scratch. Incredible that we have to justify our need for the support because we do not fit into a box.

For context, I have described 3 out of 24 non-medical touchpoints that we have or will need to access in the future. This is the reality of how unco-ordinated and under funded services are.

Out of the Box

The frustration, swearing and tears have eventually resulted in a pro-active and positive effort to make a change. 6000 children are born each year with no diagnosis. Many many more, with a diagnosis, will still suffer from the lack of co-ordination. Please support #outofthebox Out of the Box

 

#undiagnosed should not be a barrier. Please support @swan_uk who provide a lifeline to those with no diagnosis.

*Each individual therapist has tried their hardest to help. This is no way reflects on the individuals but the system. More training on #undiagnosed is needed to avoid delays in services because of a lack of a label.

Swan UK have provided a lifeline to all we have faced in the past 2 years. We need this group and funding is at a critical junction with some big grants ending. My one request is to help support Swan UK to continue running and supporting the 1000 families already signed up, as well as reaching out to the 1000s of other families battling in isolation.

If you would like to donate to support the work of SWAN UK you can do so via the Just Giving page or our Virgin Money Giving page. You can also donate by texting SWAN11 £3 (or any amount up to £10) to 70070


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