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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.
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Theatre Hullabaloo’s Luna reviewed by Holly Borba
One of the things I love about being an American expat in England is the opportunity to see great theatre. What I love even more is when I can share that great theatre with my daughter who is seven and has autism. She loves books and storytelling but has enough sensory challenges to make accessing theatre and movies a potentially stressful experience rather than an enjoyable, enriching one.
We can usually count on Cambridge Junction and last Sunday’s production of Luna by Theatre Hullabaloo possessed all the qualities that make for a successful experience. The story content was simple but interesting. The pace was slow but not boring, employing lots of physical gesture. The use of gesture and physicality is generally much better than a heavy reliance on spoken word which can be difficult for children on the spectrum to process.
Perhaps my favorite aspect of Luna was the beautiful live music. Live music is almost always better because the source can be seen and generally is not too loud. By contrast, recorded music generally is too loud and it can be difficult for a child to know where the sound is coming from, all of which would add anxiety for my daughter.
“children have a sophisticated, emotional landscape”
Obviously live music adds to the educational value for all children as it allows them the opportunity to learn about different instruments and see how they’re played. I liked the music so much I was wishing they had a CD from the performance. This isn’t just a fanciful wish either. My daughter is incredibly resistant about having music on at home because she has so much anxiety about anything unfamiliar. Being able to access music from a familiar story or play would be fantastic.
I spoke to Miranda Thain, Creative Producer for Theatre Hullabaloo to tell her how much we enjoyed the show and how appropriate it was for my daughter. I asked whether their shows were ever made with autism or special needs in mind. While Luna wasn’t specifically made with that in mind, Thain agrees the underpinning values of their early years work—gentle, visual, musical, strong physicality and with an intimate engagement from the performers—have made for really good experiences for all children. “We’ve found that the sensory elements of the production are engaging for babies from as young as six months too. I have a strong belief that children have a more sophisticated, emotional landscape than sometimes we give them credit for, so we’ve made a show that we hope is emotionally meaningful for our audiences.”
Another plus for Theatre Hullabaloo is they always include ‘relaxed performances’ so parents can feel confident to bring children with special needs. As a company which seems to have a good deal of influence in the world of children’s theatre, I hope they will inspire other companies to adopt similar values in their productions.
Luna is on tour until the end of the year so catch them if you can. Check their touring schedule here:http://www.theatrehullabaloo.org.uk/shows-schedule.asp?showid=82
The truth is I don’t get the endless creative treasures, loving pieces of art or toilet roll fairies that other mummies receive as a sign of true love. And dutifully collect in ever expanding nooks and crannies around the house. Rosy’s traditional creative abilities fall way short of the six-and-a-half years she’s been around. Barely able to hold a crayon in a tripod grip, she is prolific in scribbles and scrawls… pages and pages and pages… but there is little else.
So, I look for other things to treasure in Rosy. Her gaze when she chooses to shine it upon me – it positively glows, warms me from the inside out, seeing her eyes fix on mine. Her shuffle as she curls her long legs into my lap and under my arms for a snuggle. Her repetition of my favourite phrase, “Hello, baby girl”. Or her only ability to kiss, a “mwah” and a smile.
This all adds up to one thing… trust.
Unquestioning, innocent, utter trust. Trust that I love her, enjoy her company, find her captivating, funny and frustrating in equal measure. Most of all trust that those constants will continue forever.
Let it be that – just that… no more, no less, but always and true.
Sleep well, baby girl.
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All kids do it… but if your kid finds speech really hard, has limited vocabulary and reasoning skills, what follows is literally amazing! As her mummy, I nearly fell off my chair.
Over supper this evening, Rosy was drinking her milk – she asked for ‘Pink Milk’ and…
Rosy,”Milk comes from cows.”
Mummy, “Yes, that’s right, it does.”
Rosy,”Pink milk comes from pink cows… Who painted the cows pink?”
All with a cheeky smile – Rosy was telling her very own joke!
Rosyism no. 457
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I had a shared moment with a stranger this morning over a muffin. There we were enjoying a not serene but close’ish coffee with the kids, when he swooped. Nabbed an orange and cranberry muffin and was gone.
Fiendish Fred was his name and muffins are his game. Fred’s mum was embarrassed and apologetic… “What for?” I said, “We have one too…” She knew at a glance what I meant. Social norms, dos and don’ts are not Rose’s strong point either.
This week we have been on our annual visit to Centerparcs, not for the snobs amongst you, but for our family and 1.4 million others last year, an inspired holiday. Swimming and bike riding everyday, Rose and Ned’s activity version of ice cream parlour and sweet shop rolled into one!
Fred’s family come for the same reasons we do, no stigma, no judgement, Fred likes the way the ‘Holiday House’ looks the same every year. His mum is relieved to find somewhere with well organised and inclusive fun, just like I am.
As I say, not for the snobs amongst you, but if you have a child or grown up with a disability Centerparcs is an understanding destination. Or if you wanted to produce a documentary on tattoos the tropical swimming paradise is research heaven.
Can I start by saying, however unfashionably, I’m not looking forward to the littlies going back to school. We’ve had a fab summer and the good weather seems to be back just in time for the start of term.
I think I may just have found the perfect school shoes for her! They are cute (she won’t wear boring black – the behaviour problems just aren’t worth it), have a patent toe (she wears leather out), they do up with velcro (she cant manage buckles or laces), they are in a narrow width (what ever happened to fitting for length and width?) and they are in her size (so often velcro stops at size 10/28 – fine if your kid doesn’t have fine motor problems – mine does…). Here’s a pic… sooo lovely!