‘Prove’ to me that your daughter is disabled

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Sadly, it seems that this is what the world has come to. A simple day trip spoilt by me needing to justify our need for a little bit of extra help.

I was brave and for the first time attempted a day out with my 3 children  – on my own. This may not sound like a big deal to many, however with a learning disabled child in the mix, as well as a toddler, getting out without help is not easy to do. I did it though and we went to a well known attraction on the coast, which advertised itself as ‘fully disabled accessible’.

The day started well, we left home without too may traumas, we arrived in good time with everyone in good spirits and the morning passed with little to comment on, (excepting the usual activities – GG crawling around the floor during one talk and the high pitched shrieking at the appearance of sun lotion).

The venue turned out to be a maze and with no automatic doors (aahh) I found myself battling against the crowds with GG in her buggy screeching for lunch. Trying to navigate to the restaurant was a nightmare, having discovered that the usual access was up a flight of stairs. A kindly member of staff spotted my dilemma and assisted us to the restaurant – guiding us right back to the start to find the lift. Not a great experience, but we made it.

I had prepared for this bit as I knew lunch would not be do-able on my own. GG is incredibly demanding around food (she takes after her mother!)  and without a doubt, the minute food arrives, someone needs the loo and chaos reigns. My sister was awaiting my text to come and join us to help me manage the most difficult part of the day. However completely unexpectedly (and unreasonably) they wouldn’t let her in….

You can picture the scene, GG has screeched until food arrived being in an unfamiliar place and being unclear on where food would come from. Food arrives and toddler announces he needs a wee – quickly mummy! The toilets are back downstairs and through the shop. At this point, my sister is explaining politely the situation and still being refused entry – despite wanting to buy lunch from the restaurant.

In an impossible position, I dash downstairs, quick trip to the loo and explain frantically to a member of staff that I really need my sister to come in. The manager appears and I cannot convey how furious / upset she left me. In the middle of a mini-crisis with my girls being upstairs without an adult, she asks me to prove that my daughter is disabled….the people in the lengthy shop queue are all staring now. My son is looking at me questioningly.

I have already explained that my daughter uses a specialist buggy  and has a learning disability. I have offered for the manager to come and see, given she is sat just upstairs in the restaurant. However, I am told in no uncertain terms that they cannot allow ‘just anybody’ into the restaurant unless they can prove they are pregnant, disabled or a carer – which my sister clearly was in this situation. I was told I needed to go and get my blue badge from the car as ‘proof’. I was speechless. Her staff were visibly embarrassed.

I ran back upstairs, toddler in tow to my amazing 9 year old who was, as always, doing way more than any 9 year old should. To the gorgeous GG who fortunately was oblivious, tucking into her lunch with gusto. My sister determined to help me out, took a photo of the blue badge through the car windscreen and without hesitation, an apologetic member of staff allowed her in to join us – the manager had disappeared from sight.

It seems to be an increasing trend that disabled people and their carers are thought to be taking advantage of the ‘benefits’ available. Whether it be the dreadful PiP process that demeans disabled people and accuses them of scrounging off the state, or stories of disabled people in the workplace being told that ‘reasonable’ adjustments to enable them to work to the best of their ability are in fact ‘unreasonable’. This was just another example of being treated unfairly and quite frankly, inhumanely.

We went on to enjoy the rest of the day, we even managed half an hour on the beach in the sun, but needless to say, it certainly diminished the pleasure of having ventured out on my own.

Note: I have not named the tourist attraction we visited however I will be sharing this blog with them privately, and offering support with staff training.

Spectrum Sunday

EMPLOY A CARER – WE ARE WORTH IT!

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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.

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.