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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 – £85 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!
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Sleep? We all need it, most of us relish it and if you are a mum to a special needs child, the chances are you don’t get anywhere near enough of it!
Five nights ago, weighing heavily in my arms and my hopes, I gently laid a beautiful, hand-crafted, personalised weighted blanket over my beautiful girl.
I tried not to get my hopes up, but I knew I was pinning a great deal on this simple idea of weight to calm her nervous system enough to help her sleep.
Rosy often has trouble falling asleep, then staying asleep and will also wake really early. Not great for any of us as she literally bounces out of bed any time of the night and is WIDE awake… really, really wide awake.
Weighted blankets like the one we have for Rosy, are in widespread use therapeutically for children with sensory processing disorders and autism. They give proprioceptive feedback creating increased body awareness and calming benefits for many children with special needs. This can help improve attention, focus and concentration and in many cases can be effective in helping calm overly stimulated children with sensory needs.
Weighted sensory items, with the supervision of a qualified Occupational Therapist, have been shown to help meet the needs of children with Sensory Processing Disorder (SPD), Sensory Integration Disorder, Autism, Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), Angelman syndrome, Aspergers, Cerebral Palsy, Down syndrome, Dyslexia, Hypotonia, Pervasive Developmental Disorder (PDD-NOS) and more…
Scope.org.uk suggests that statistics show sleep problems can be more common in disabled children. Children with additional needs also seem to have greater difficulty staying asleep. Children with severe learning disability are more susceptible to sleep difficulties with over 80 per cent of children up to the age of 11 years demonstrating sleep problems. Research also suggests that children who have autism are more likely to have sleep difficulties. It has been suggested that sleep problems last an average of just over seven years and are unlikely to disappear without intervention. Scope have a lots of useful tips on sleep, medical information and a simple Sleep Diary to help work out some practical solutions.
Checking for medical issues and environmental variables and then as consistently as possible, following a bedtime routine and a sleep training method can improve the quality of life for the whole family. It can take time to establish positive sleeping patterns particularly if trying to change a long-standing problem. It is worth all the effort though!
We have finally, with a combination of a sleep routine, restful music and now her weighted blanket, had our first five consecutive nights undisturbed sleep in a row, ever! It has taken almost seven years…
As you can imagine, we all love her weighted blanket, even our cat Pudding.
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Hmm, I sigh at this time of year… “Why?” I hear you cry. Christmas is on the horizon; the festivities, the sparkle… but not yet upon us in its frenzy of planning, wrapping and of course shopping!
Now, there it is… the Christmas shopping. I find myself sighing again, sorry. I don’t want to be all bah humbug about it.
It makes me feel like this for two reasons:
1. Going shopping with kids, any kids, is pretty courageous but imagine doing it with a deftly defiant, escape artist like my six-year-old autistic daughter!
2. What, oh WHAT on earth do I buy her and more importantly, what do I tell all the grannies, aunties, uncles and other family when they ask what she wants?
They are afraid of getting it ‘wrong’, they are not sure what she is able to enjoy, interact with or manage. She is developmentally delayed in all areas of her development making many of the ‘age appropriate’ toys simply out of her reach. Those ‘helpful’ age guidelines mean nothing when you are six going on… what age? Well even that’s not simple, progress is not uniform, especially with special needs children.
Often in their keenness to show their love they instead go overboard and a mountain of presents appear – talk about sensory overload. Too much can be worse than too little for children on the spectrum or with sensory processing disorders. They can’t take in all the excitement and plethora of gifts. For Rosy she simply becomes obsessed with the wrapping paper instead. Good tip that – just ask family to pop their present in a festive bag rather than lots of wrapping paper!
Once I give it some thought though, family are likely to get several suggestions for toys, books, clothes, the odd practical thing. Then they ask the next question, ‘Where do I get a lace-up shoe to practice fine motor skills?’ or ‘What was the name of those colouring books you told me about?’
So this year I am keeping it simple, sensitive and sane… I’m creating a personalised Christmas Gift List for both my children at www.RosyandBo.com
I can add the things I know Rosy will enjoy, find accessible and last more than the short flush of novelty factor. Share the lists with the rest of the family and let them choose; it means they still get to be original and also be reassured they are getting it ‘right’.
Here are a few useful things to keep in mind when making a list of gift ideas for special needs children:
- Consider the child’s sensory profile – would toys that explore the sensory side of play appeal?
- Their stage of development in different areas – it won’t be uniform, perhaps you’d like to pick an areas to work on?
- Their ways of communicating – are they verbal, do they use Makaton or PECs?
- Do they enjoy physical play and movement?
- Or are they more quiet and keen on detail?
- What is your child’s favourite thing to do or play with? Can you expand on it or reduce a rigidity they may have?
- Don’t worry about the age ranges on toys – these are not created with special needs children in mind.
- Potential for interaction; will the toy encourage social engagement with others?
- Self-expression; does the toy allow for creativity, uniqueness, and making choices?
- Multisensory appeal; does the toy have some cause and effect aspect? Perhaps lights, sounds or movement?
- Method of activation; will the toy provide a challenge without frustration? What is the strength required to work it? What are the number and complexity of steps required?
- Where toy will be used; can the toy be used in a variety of positions such as side-lying or on wheelchair tray? Will the toy be easy to store?
- Opportunities for success; can play be open-ended with no definite right or wrong way? Is it adaptable to the child’s individual style, ability and pace?
So perhaps this year I can at least tick the gift anxiety off my list… Now, what about the turkey order…
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New one-stop shop RosyandBo.com brings together the best gifts and lifestyle products for families with special needs children
RosyandBo.com, launched earlier this month in response to the very real difficulties faced by special needs families. Co-founder Hannah Postgate, mother to Rose who has autism and learning disabilities, found it hard to find great products for her family, so set about improving the lives of families across the special needs community.
By teaming-up with special needs expert Lauren Allen and retail guru Lesley de la Mare, Rosy & Bo have sourced products from Europe, Australia, Hong Kong and the USA that all have three things in common; they are useful, life enhancing and stylish.
Rosy & Bo is brimming with great products, all handpicked by them, with helpful descriptions, expert tips and no-nonsense ideas on how to use them with a range of special needs and disabilities. Uniquely, Rosy & Bo features products from both special needs and mainstream retail partners, and have the vision to see how this diverse collection can enhance the lives of special needs families.
As an online marketplace, Rosy & Bo allows parents, friends and family to shop from many different Partners through one checkout. Rosy & Bo’s personalised Gift List for birthdays and Christmas, means parents can make a list of suitable products, so family and friends can choose the perfect gift for a special needs child in their life.
Rosy & Bo also plans to provide support – a friendly neighbourhood – for informative tips, practical products and helpful ideas, all in one inspiring place.
Co-founder, Hannah Postgate says, “Being a parent to a daughter with complex special needs has been tough… very tough, so I really wanted to bring families like ours, innovative, practical products, which are also attractive and inspiring. While the functional items have a really valuable place, I was just so fed-up with the dull, institutional products out there. So Rosy & Bo’s mission to enhance and inspire every-day life for special needs families became something we just had to do!”
The Rosy & Bo team live and breathe special needs; both at home and at work. Children with special needs usually have a lifelong condition that they grow with and a family adapts to over a lifetime… Rosy & Bo helps with all aspects of family life not just the medical or educational needs of the individual child, but the other things to make life easier for the whole family. Rosy& Bo has great ideas for family life, even the most special ones.
A taster of the great ideas for family life on RosyandBo.com:
Gifts and parties – birthday and great gifts with the Gift List for family and friends
Travel and holidays – travel comfort zones, blackout blinds, swim-gear, sleeping bags.
Manageable mealtimes –grounding highchairs, ergonomic cutlery, brilliant bibs.
Better bedtimes – nightlights, sleep trainers, wriggle-proof pjs, weighted blankets.
Kit for kids – itch-free, chemical-free, fabulous clothes, shoes and accessories.
Home comforts – storage ideas, clean-up solutions, calendars and organizers.
Toys, learning and play – sensory fun, active play, social skills, homework and more
Well done! – sticker charts, reinforcers and novelty toys.
About 1.75 million children in the UK have a special or additional need. My daughter Rosy is one of them. She is a vibrant, loving six-year-old, with complex learning disabilities and autism. She has developmental delays and receives speech therapy, occupational therapy and behavioral therapy. Bringing up a child with any disorder, condition or special need, is both amazing and a challenge; a challenge for the obvious reasons, and amazing because you don’t know the depths of triumph and joy until you see your child overcoming some of those challenges. If you are reading this, the chances are you know a special needs parent, or you may be one yourself. We all face different things with our special children and I don’t claim to speak for every special needs parent, but from the ones I know, some things are pretty universal.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve had a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there. Hospital visits, daily therapies. Paperwork stacks up, spare time is spent researching new treatments, advocating for her in the education system. This is not to mention the emotional toll of raising a special needs child, which seems so much more extreme for us. I am always appreciative of any help no matter how small.
2. I am jealous. It’s a hard one for me to come out and say, but it’s true. When I see a much younger child do what Rosy still can’t, I feel a pang of jealousy. It hurts when I see her struggling to learn to do something that comes naturally to a typical kid. It can be hard to hear about the accomplishments of my friend’s kids. Sometimes, I just mourn inside for Rosy, “It’s not fair.” It sounds petty, and it doesn’t diminish all my joy and pride in Rosy’s accomplishments. But often it’s very hard for me to be around typical kids. Which leads me to the next point…
3. I feel alone. It’s lonely parenting a special needs child. I used to feel like an outsider around mums of typical kids. If I didn’t have such a fabulous ‘Sistahood’ of ordinary and special needs mums, with whom it’s not uncomfortable or shocking to talk about Rose’s difficulties, I would have lost all sanity long ago.
4. I am scared. I worry that I’m not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Rosy’s future, whether she will ever drive a car, or get married, or live independently. I am scared thinking of the hurts she will experience being “different” in what’s often a harsh world. Finally, I fear what will happen to her if anything were to happen to me.
5. I am human. I have been challenged and pushed beyond my limits in raising Rosy. 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. But I’m just like the next mum in some ways. Sometimes I get grouchy, and sometimes I just want to give-up, but I still have dreams and aspirations of my own.
The truth is it is hard, but I was brought up to “keep on trucking” and that is what I shall do and is what hundreds of thousands of you do everyday. It is not just our children who are amazing – we are too!
Hannah Postgate is co-founder of RosyandBo.com an online marketplace of gifts and lifestyle products for special needs families.