The chase was on – I sprinted after her, she was gone before I could reach her. I froze, scanning frantically – through the mêlée of suits, tourists and police officers. She’d gone, vanished. Panic rising, I caught my breath and headed for the nearest doorway – there were five to choose from. Tentatively edging through a door marked, ‘Members’ Family Room’ I found her innocently asking, “Can I play with the dolls’ house?”
Rosy, seven, has Autism and Learning Disabilities and in busy, public spaces she becomes very over-excited and experiences a sensory overload, which means she finds it really hard to regulate her behaviour. She is overcome by impulses; to run, jump about, flap her arms and shriek.
Possibly not the ideal behaviour for the corridors of power, the higher levels of government where the most important decisions are made, but there we were, causing a ruckus. The Houses of Parliament are an intimidating place, both in terms of bricks and mortar and as the foundations of democracy, rights and freedom.
Rosy and I were there last week to speak up for those rights. The rights of children with disabilities to receive appropriate, affordable childcare that meet their needs and are close to home. We were one of six families asked to give evidence to a cross-party Parliamentary Inquiry looking in to childcare for disabled children.
This is a provision most families take for granted, but for close to three-quarters of disabled children in this country it is simply not there. When asked in a recent survey, only 28 per cent of Local Authorities have provision for this group of children, meaning there are well over half-a-million children missing out on childcare, whether it is their right to 15-hours of pre-school education, wrap-around care such as after-school clubs, holiday play schemes or inclusive activities for young people with disabilities.
Perhaps I shouldn’t have brought Rosy along to such an important occasion – but you know what? I didn’t have any childcare! The irony was not lost on any of us that day. Bringing her was not the easy option – a train journey from Cambridge, two tubes, a late night for Rosy and a big upset to her routine. But I can’t commend Parliament enough! The staff at the entrance queue fast tracked us through, the police officers chuckled at our mad dash around Central Lobby and the MPs leading the Inquiry Robert Buckland and Pat Glass made us so welcome.
They and the others on the Inquiry panel – including Baroness Eaton and MPs Teresa Pearce, David Ward and Sarah Champion were understanding and really interested in our views. We felt truly listened to and they were shocked – the evidence from parents like us on the front line is a far cry from what they had been told the day before by the Local Authorities that gave evidence.
Moreover I met, in person, the women who have been on this desperately seeking childcare journey with me – the mothers of four other children with disabilities. Children of different ages, different needs and in different parts of the country, but all struggling with the same challenges to find appropriate, affordable childcare. The solidarity amongst the women there with me, was palpable. We are determined to change things for families like ours and this occasion was a significant step.
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The Play Doctors
Family run and with inclusion at the heart of everything they do, The Play Doctors are dedicated to helping children and families with SEN and unseen disabilities.
Wendy and husband Martin, are a great duo – with a vast knowledge of children’s play, development and disability access and inclusion.
Their daughter Lydia, Wendy’s sister Angela and the all important test panel – the grandchildren- make up the rest of the team.
The Play Doctors range includes Books, Communication Fans, School and Early Years Resources, Positive Behaviour Tools, Home and Play Resources.
Wendy says, “I love my work, every enquiry is different and I enjoy responding to each customers individual needs, meeting challenges head on and working towards positive solutions”
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Who says it has to be the Easter Bunny hiding treats? We think it might be the Easter Horsey… From tall tales to spending a bit more time outdoors, we want to put a spring in your step this Easter!
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There’s lots to think about when you are looking for presents or gifts for children with autism… We’ve had a little ponder right here…
When picking toys for children with autism, think about what they like. Often they have a special interest; look at toys or books, if this is a highly specialised area you may want to keep an eye out for something during the year as they can be difficult to find around Christmas or birthdays!
When choosing toys for children with autism think about their developmental ability rather than their age. For example:
- Simple turn taking games will help a child who is beginning to notice their peers
- Cause-and-effect toys are great for children with autism who interact very little with other people. These toys teach autistic children their actions can cause something to change in their environment. These types of toys can provide fun positive interactions.
- Many children have difficulty with fine motor skills. These are skills that require them to use their fingers and hands (like holding a pencil). Simple fine motor toys that are fun can also help children on the autism spectrum develop this essential skill.
Regardless of age many autistic children enjoy sensory toys.
- Do they enjoy visual stimulation? Visual toys like lava lamps, light projectors or light twirlers can be fantastic.
- Do they like to touch lots of things? Think about tactile, sensory toys for children with autism.
Toys Can Help with Social Skills and Language
Children learn through play and is essential for teaching social skills and language. Small world, role-play and dressing up can all help with these skills.
I had given up on having a career again… returning to work after children is not straight forward for any mum. I knew it was close to impossible for me because of Rosy’s special needs. The endless commitments of her care, appointments with school, hospital and the unpredictable nature of her needs, meant no workplace would even consider me.
What boss was going to say, “Sure, roll in to work at 9.30 after dropping off two kids at seperate schools and then leave again at 11.30 to collect Rosy because she only does school in the mornings.” And that’s without the mornings I’ll be late in because the TA at school had a couple of questions or the days I need to leave early to take Rosy to her eye check up at the hospital or some such!
We all know what I’m talking about…
As a mother you sacrifice all the normal things you are told to expect: sleep, social life, money and work, but then those things cut deeper and last longer as your child’s special needs or disability become all-consuming. The prospect of working seems very distant…
I have been out of the workplace nearly seven years, much longer than many of my counterparts who don’t have children with disabilities. It’s not uncommon for mothers like me to take a decade or more out of work… for many it’s forever.
I did try to go back to my old job, but my boss would not let me work from home a couple of hours a week, just enough flexibility to make it all fit. He presented me with a 14-page assessment form and turned me down because I did not have a wheelie chair at home… So I had no choice – really, none.
I became resentful and very low – my own dreams just dissolved into a brutal treadmill of caring, appointments and battles for her needs. Most special needs children have a lifelong condition and their family adapts to over a lifetime, often involving huge dedication in terms of time and effort.
Many mothers of children with special needs feel they DO work – at home! You have to become an expert in special needs and your child’s difficulties and behaviours. You do research, plan and manage their education, I have had to become a legal expert, a form filling expert, a social care expert, a SALT expert, an OT expert. Do educational work with Rosy at home, her therapies at home… the list is endless.
I totted up the hours, I average an extra 12-15 hours a week in terms of Rosy’s care needs, appointments, hospital visits and meetings with school.
It’s easy to underestimate how much time and effort and self-sacrifice is involved in being a carer. Many children have lots of hospital appointments and stays or lots of time off school with complex medical conditions. Children with disabilities get ill frequently – Rosy suffered from seizures, which meant the slightest temperature I would need to keep her off school or they would need to send her home.
I thought I would try and get a feel for the views out there about this and popped a post on MumsNet… the response has been astonishing… Mums are really struggling with this. I had more than 100 replies in just a few hours…
Here are a few of their thoughts…
- Appropriate, affordable childcare is the main problem, but stress and exhaustion come a close second to why mothers of children with disabilities find it hard to return to work.
- If mothers give up work families rely on one salary and the wage-earning partner tends to work long hours, which further polarises childcare responsibilities.
- The lack of support and understanding from employers mean many feel they have suffered discrimination in the workplace and have been forced out of their job. And because many spend all their time battling for their child’s needs to be met, they don’t have the time or the funds to fight discrimination in the workplace.
- Leaving a child with disabilities is harder – good quality care is the main barrier. And often mums feel they are compromising on their child’s care, so there is also a heightened sense of guilt.
- After-school clubs and holiday schemes are not an option because of the care my child needs. If I want to send her I have to find somewhere able to take her and then send a carer with her – I looked into it – £163 per day! Which makes 13 weeks of school holidays a year a major problem.
- Something else people forget is that you can’t share pickups, play-dates after school or exchange childcare. Mothers are often a child’s main carer 24 hours seven days a week, and can’t just share babysitting, sleepovers and other childcare arrangements in the way you can with children who do not have special needs or disabilities.
- I know a single mother who was told by her local authority, she should give up her job to make up the shortfall in appropriate care for her son. This, after she had struggled to get back into work, came as a real blow especially as they should be ensuring sufficient childcare for children like hers.
- The current job market is so tough many mums feel discrimination is inevitable when they need flexibility or time off to deal with a child’s needs.
- Did you know, only 16 percent of mums of children with Special Needs work compared to 61 percent of other mothers?
- Families with a disabled child pay at least 5 times more towards childcare costs than parents without a disabled child.
- Women are almost 3 times more likely to start their own business or be self-employed than men. Mumpreneurs, contribute £7.4bn to the economy each year.
How to make it work?
Some of those women setting up businesses are mothers of children with special needs or disabilities – they are not doing it because it is ideal, but because it is the ONLY choice open to them! It is though necessity!
It’s not the easy option. But we do it because working for someone else who doesn’t understand is even tougher than going out there on your own! At least with Rosy & Bo, I work from home at all sorts of odd hours of the day and night – snatched where I can so it fits around my children and I can also call on the support of two colleagues when I’m in a tight squeeze.
Another mum told me, the only way she had managed to stay in work was by reducing her hours, taking a demotion to allow her to have a more flexible job & by having a wonderful employer and colleagues who are always willing to help her out if they can.
What we can bring to the workplace?
I have been challenged and pushed to my limits bringing up a child with special needs. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without her.
It teaches you perspective, priorities and patience like nothing else.
We are resilient, resourceful, adaptable, great negotiators, formidable advocates and extremely hard workers.
What needs to change?
The main issues that, if we can find the energy, need to get someone to listen to, are:
- Better access to specialist childcare that should be as affordable as it is for children without disabilities.
- Employee rights to flexible working so allowances can be made to take time off for appointments, illness and support for the emotional wellbeing of parents and children.
- Career counselling and a re-training grant to help long-term carers get back into work would be very valuable and so appreciated by many mothers like me.
Me? Well… I was left with few options… Here and there I looked for other opportunities – working freelance, franchise businesses, all sorts of things… but so many things were closed to me. I resigned myself to being at home full-time or looking for poorly paid part-time, term-time only work.
But against all notions of sense, I decided to become my own boss and set up Rosy & Bo! My own business would allow me to fit in my mothering and caring commitments. Give me a sense of identity again and hopefully an income.
But I wanted to use everything I had learnt about family life from a special needs perspective. Rosy & Bo was a way to combine all that knowledge and empathy with a real desire to bring a bit of gorgeousness to the world of special needs and disability.
Frankly, I can only do this because I have the support of two other fantastic women co-founders, two glorious grannies who lend a hand and a husband prepared to help me make it all work and cook the odd delicious omelette! It’s feels like walking a tightrope, but I know how lucky I am – many mums simply don’t have the chance.
We all do it… do ALL of it I mean. When you have a child with special needs or disabilities it is all to easy to fall into the habit of doing everything for them.
I do understand that there are many children for whom this is entirely necessary, and doing it all is not a choice. I suppose I am writing from a viewpoint of a child with capability but not much in the way of co-operation.
I find myself doing everything for her, as it is easier than the melt-down if I don’t. I tend to do most things for her neuro-typical brother too. Things that I realise they should and could be doing for themselves; taking their plates to the sink after a meal, putting their rubbish in the bin, hanging up their coats…
So here is a step by step guide to encouraging independent self-help skills and learning to back away;
1. Have the resolve to follow it through – there will be a hump to get over while your child resists the new routine.
2. Make sure the skill you are trying to teach is developmentally appropriate to your child. Don’t frustrate them with a task they can’t succeed at. Make a list of the skills your child can already do – and a few new ones to add. Keep the list visible to remind you what your child CAN do and so what not to help with. This is as much about you changing your ‘help’ habits too.
3. I found it really helpful to make little cards with velcro on the back and stick them up all over the house to remind me not to do the task for them and as a close-at-hand visual cue to remind them what their task is. There’s even one in the fridge to remind me and them, they can open their own yoghurt pot!
4. Work out the steps involved in the task – a task analysis if you like – and perhaps work backwards, so you do everything but the last piece of the task. This approach works for long tasks like cleaning teeth or for short things like putting their plate by the sink. If you have to support them to almost the end but then gradually fade that support you are allowing your child to succeed.
5. Keep it in context – always teach it in the place and time that your child will be needing the skill.
6. Get your child’s attention first – obvious but sometimes the hardest part of the task.
7. Keep your instructions, cues and physical prompts to a minimum, just give your child what they need to complete the task. Anything you do will eventually need to be faded.
8. Keep it positive, use reinforcement and praise; lot’s of ‘well-dones’, high fives and hugs! Carrot not stick works best in our house. Or if social praise is hard for your child, you could set up a sticker chart with a reward after say three stickers. This is especially good if your child can manage deferred reinforcement. Or try a more immediate reward like a raisin or chopped apricot every time they attempt the task you have set them.
9. See it through, stay neutral, always end each task with some effort coming from your child, however small. Reinforce their effort. Gradually expect more from them with each task and reward the increased effort. Know what they are capable of and aim higher and higher.
10. Don’t be surprised if it takes a long time – we all know our children need time and lots of practice to learn new things. The other thing is, often they need to keep using a skill or they will loose it – maintenance is crucial. Be consistent and patient, even though I know it’s tempting to just do it for them!
11. Perhaps read a favourite book about doing things for themselves. Charlie & Lola’s – ‘I can do everything that’s anything all on my own’ is a hit.
It’s early days but we’re giving it our best shot – let me know how you get on in your house…
There is a group of mothers in our midst that modernity has simply passed by…
Should you find yourself in this circle, you will identify with the turning of life as a mother to a child with disabilities or special needs. It is often monotonous, hum-drum and turns relentlessly day-in-day-out.
It is a motherhood that lacks the modernity our contemporaries living in Western societies have come to take almost for granted. Unlike our emancipated sisters, we can only gaze at the freedoms they enjoy.
For us our version of motherhood is firmly stuck in the 1950s. Endless caring for children with needs often years younger than their chronological age; the bed-changing, hand-feeding, nappy-changing, washing, cleaning… the list is endless and with little or no chance of ever being over for many mothers like me. Often children with disabilities are unable to ‘give back’… They may be non-verbal, physically immobile, unable to connect emotionally, making the rewards of motherhood that much harder to uncover. But uncover it we do; it’s the small things, a look, a smile, trust, treasured all the more for being so hard won.
What we do not enjoy, as we continue to pass through motherhood unnoticed, hidden behind closed doors, are the freedoms like; a day off here and there, a paid job if we’d like, some financial freedom, a choice to be a stay-at-home mum or not, a visit to the cinema with our hubby, a holiday at the seaside, Christmas with the family, playdates with kids from school, ballet classes for our girls, football for our boys… normal stuff.
So much is off-limits. We exist in an opaque bubble, which obscures oppression and disadvantage. We are a disadvantaged, disenfranchised group. Through a lack of affordable, good-quality childcare, first-rate specialist education for our children, respite care and rights to flexible-working and support, we are forced into a lifetime of caring.
Distinctly un-modern, I’m sure you would agree. Hard to imagine this is going on in Britain today? We need to speak up, speak out. Not because it is only about work or our rights, but because it is about a society that does not value our contribution, recognise our sacrifice and support us, our children and our families. Society is allowing us to fade into a life that should be firmly in the history books.
Be proud of what you do for your children everyday, but ask also what you may dream of for yourself…
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Returning to work is tough after kids, full stop. So I almost feel a bit of a fraud bleating on about this topic, until you consider one of my children has autism and learning disabilities. Disabilities, special needs, hospital appointments and appropriate childcare all play a part in the difficulties mother’s like me face getting back to work. But there are also the barriers we face from employers, not to mention the sheer exhaustion and strain making it an impossible prospect for many mothers.
In a recent Woman’s Hour interview I began to explore this subject – and was then asked to write a guest post over on Special Needs Jungle The feeling amongst other mothers in my position is astounding – just take a look at the responses on this MumsNet thread I posted…
This is not something we can continue to leave unsaid – we need to talk about it, air it and try to change it.
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“Honest & compassionate, I couldn’t fail to be moved”
“Loved her honesty; given with grace.”
“Enjoyed the honest interview, the feelings of grief and jealously ring true.”
“You are an inspiration to me.”
“You’ve really inspired me Hannah – thinking of setting up my own business!”
Hannah from RosyandBo.com interview about her struggle of combining a meaningful career with caring for a child with a disability. On BBC Radio 4′s Woman’s Hour – poignant, heartfelt & inspirational – listen again here http://bbc.in/1hHZSxo
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I’ve made two major promises in my life – to ‘The Mad Cyclist’ at our wedding and to our babies when they were born… both promises were short and simple,
“To love them with all my heart and to do my best for them, all my life.”
Well, the New Year seems an apt time to make another… This time to families like mine – families with special needs children.
Because I’ve been there, am still there, and will always be there with my special needs child, I really want to make family life easier and lovelier for other families like mine. So along with two friends, I set up RosyandBo.com, where we promise to always:
- Find useful products and gorgeous gifts for families like yours.
- Innovate and develop new products and ideas where they don’t exist and can see a need.
- Use our personal experience and professional expertise to bring you clear, informative tips and ideas.
- Listen to you; the real experts in everyday life with special need children.
- Work hard to provide a haven, a friendly neighbourhood where you can share stories, tips ad ideas with other families, because we know sometimes it can all get a bit overwhelming.
- Respect you, be on your side and never judge you. We know that you need support, practical products and helpful ideas, wrapped up in loveliness.
- And finally to pamper you too, because you’re all superstars and all too often get forgotten!