All posts by Guest Blogging

Guest Blogging

About Guest Blogging

From time to time we invite charities, carers and those in care professions to contribute to our blog to provide an insight into what they do and how we work together to improve people's lives. If you are interested in contributing please click here to contact us.

Chernobyl Children’s Hospital Revisited

By Richard A Street M.B.E. Chairman Chernobyl Children Life Line

We have just returned from our visit to Belarus where we give support to the families and children affected in some way by the Chernobyl nuclear disaster. This is a trip we undertake each year and sometimes twice per year. As I have told you there are not the facilities available in Belarus as we take so much for granted in the UK and over the years we have taken many things to support the care of the children and their recovery.

We have purchased a number of items from Rompa especially sensory lights which are not available in Belarus. We are also grateful for the items which were donated by Rompa to use to assist the children’s recovery and time, especially in the Children’s Cancer Hospital, however this year we also supplied some lights to the Social Services in Osipovichi for use with the day patients and users there. All of what we took was extremely well accepted and will benefit all that attend both places.

Rompa Donations to Chernobyl Children's Hospital

Below is a letter I received from Elena the child psychologist at the Children’s Cancer Hospital just before my visit where she is telling me about the benefits of items we have taken on earlier visits.  The letter refers particularly to Laser Sky Projector, the LED Projector and the `magic ball` is the Laser Sphere Projector. I think the letter describes the great benefits gained by the lights at the Hospital.

Thank you once again for your help and support in the work we do with the children of Belarus in giving them some hope in their lives.

Dear Richard!

I congratulate you on the coming Easter holiday! I wish that you, and all members of your family, all volunteers of the organization have everything in the best way. All of your health, joy, strength, happiness, success!

Thank you very much for helping the children of Belarus! I especially thank you for helping children with cancer. Many and many children and parents find comfort when they come to us for relaxation sessions and have the opportunity to observe the starry sky (and other pictures) on the flow of the relaxation room. It became possible thanks to the projectors transferred to our centre. Still in the procedural room of the day hospital a special love is enjoyed by the “magic ball”, shimmering with different colours, which the child can look during the procedure and be distracted, and after the procedure, children can put their hand on it and make a wish – the ball is “magic”! .. This not only raises the mood – it’s comforting!  It is interesting that many children say that wishes come true!

But have not miracles happened during the years of our friendship and cooperation? The day before yesterday I saw Nastya, yes, that girl, who was sick of myeloblastic leukaemia, who was lying in an isolated box, dreamed of drawing, but she could not, because on her right arm was connected a dropper. The very one I gave to the beautiful pencil brought by you said that it was a pencil for your left hand, specially brought by you from England – and she learned to draw with her left hand and was very happy about it (which is important, when you lie in an isolated box and other joys are not available to you! … she did not even have a TV, or a computer to watch cartoons ..) Now this is a big, beautiful girl who defeated the disease and became so strong that she could come to children’s holidays without a mask!  Please accept greetings from Nastya and her family!

If you would like more information about the work Chernobyl Children Life Line do or would like to make a donation you can contact them directly:

Richard A Street, 91 Wharf Road, Pinxton, Derbyshire NG16 6LH

Charity No. 1014274

Tel :01773 810712 / 07816 913787

email richard-street@btconnect.com

Understanding Makaton

Makaton Badge

Makaton is a language programme using signs and symbols to help people to communicate. It is designed to support spoken language and the signs and symbols are used with speech, in spoken word order.

Using signs can help people who have no speech or whose speech is unclear. Using symbols can help people who have limited speech and those who cannot, or prefer not to sign. With Makaton, children and adults can communicate straight away using signs and symbols. Many people then drop the signs or symbols naturally at their own pace, as they develop speech.

Makaton Nursery Rhymes

Being able to communicate is one of the most important skills we need in life. Almost everything we do involves communication; everyday tasks such as learning at school, asking for food and drink, sorting out problems, making friends and having fun. These all rely on our ability to communicate with each other.

For those who have experienced the frustration of being unable to communicate meaningfully or effectively, Makaton really can help. Makaton takes away that frustration and enables individuals to connect with other people and the world around them.

Makaton is extremely flexible as it can be personalised to an individual’s needs and used at a level suitable for them.

    • It can be used to:

    • share thoughts, choices and emotions
    • label real objects, pictures, photos and places
    • take part in games and songs
    • listen to, read and tell stories
    • create recipes, menus and shopping lists
    • write letters and messages
    • help people find their way around public buildings.

Makaton Make and Do Activities

Today over a million children and adults use Makaton symbols and signs. Most people start using Makaton as children then naturally stop using the signs and symbols as they no longer need them.

However, some people will need to use Makaton for their whole lives.

The Makaton Charity exists to ensure that everyone living with learning or communication difficulties has the tools and resources they need to communicate. Our nationwide network of over 1,000 licensed Makaton Tutors and Trainers across the UK deliver training to over 30,000 parents, carers and professionals each year.

Makaton National Curriculum Symbols BookOur wide range of printed and electronic resources extends from nursery rhyme DVDs to vocabulary books covering a wide range of subjects. Our vision is a world in which all people with learning or communication difficulties are able to communicate, participate and achieve their potential.

For further information visit makaton.org

Carddies Awards

What Are Carddies?

What are Carddies?

Raquel & Esther - Creators of Carddies

Raquel & Esther, creators of Carddies, tell their story

Carddies colouring in and play sets are Card People and animals who live in a box: you can bring them to life by colouring them in, giving them names and making up their stories. Carddies are perfect for outings and travel, as well as for play time at home. The toy is self-contained, very portable and durable.

Click Here to Buy Carddies.

Winslow kindly asked me to explain how the Carddies came about, and why they might be suitable for you and your child.

How did Carddies come about?

Carddies are loved by hundreds of children, typically aged 3 to 10, but they started off by chance. I used to make “cardboard people” for my three girls whilst on holiday. I would draw hundreds of little figures (on request), cut them out, and they would colour them in and play with them for HOURS AND DAYS, in fact over several years! They gave the Carddies names, made up stories, songs and games, and treasured them.

Carddies Creators StandingOver time, when I saw other children’s reaction to Carddies, I realised they had wider appeal… The first set I made for other children, was a Victorian family at the request of a little girl; her older brother asked me for a football set. It so happens that the boy has autism and moderate learning difficulties. Although he has poor fine motor skills, he enjoyed colouring in his Carddies and it was good for his imaginary play when he used them to play a football game.

With the involvement and hard work of my sister Esther, we made sure that the Carddies retain all the principles we care about. We wanted the Carddies to be hand drawn (by us!), top quality, Made in the UK, with strong eco credentials; packaging that was compact and sturdy, yet attractive to children so that they would keep their Carddies in a lovely little home… pencils of artist quality… Basically we wanted a toy that as parents we would be happy to buy for our own children.

What is a Carddies set?

Carddies SetEach Carddies set has:
-A theme that appeals to children (Knights, School, Football, Fairies, etc).
– 12 double-sided card figures, 12 colouring pencils, 12 plastic stands, a fold-out scene that also doubles up as a naming card.
-In the case of the Carddies Football set, a little plastic sphere so the child can play a pretend football game.

Colouring in. We made the figures double-sided to extend their colouring-in value and to make them more realistic.
Play value. The stands facilitate play (we realised that although my own children were happy to play with the little people flat, or holding them up, the stands enabled children to move them around as they would other little toy figures).
Imagination. The idea of a fold-out scene to colour in and use as a backdrop came from one of my girls, making the toy similar to a mini-theatre.

Personalising. The idea of a naming card (on the reverse of the scene) first arose from my children always wanting to give the Carddies names.

What makes Carddies special?

We have been delighted to see how the Carddies have appealed to a very wide number of children, including, for example, where attention, verbal or motor skills might be more limited, and also in the case of physical disability.

These are a few of the reactions to the Carddies:

Storytelling/Imagination.

Rebecca, who reviews toys from a disability point of view, (mainly from a child’s perspective), gave Carddies a big thumbs-up, and showed how brilliant they are for play (note the wonderful names she gave the Cavepeople!): http://critiquesandtests.weebly.com/carddies—cavemen-set.html

Educational

We have often been told that Carddies are a valuable educational tool, and could even be useful in therapy:

“These Carddies sets could easily be a great resource in the early years and primary classrooms, with the different themes allowing for a diverse array of storytelling opportunities. Adding the use of simple technology, stories can be developed, supporting language and literacy skills or used as a teaching aide so teachers create their own stories.”

https://ukedchat.com/magazine/

Fine Motor Skills/Creativity/Communication/Sharing.

“I love the idea behind Carddies and feel they would be brilliant for creating social stories for a child on the autism spectrum while encouraging creativity and improvements in fine motor skills… The fact Little man was sent a football theme box of Carddies made all the difference and he had fun actually designing the kits for the players. It was a great way to unleash some inner creativity that he has and he remained on task for a little longer than usual.”

(A Boy With Asperger’s: http://aspergersinfo.wordpress.com/?s=carddies)

If a child needs a bit of help with colouring in, or placing the figures in stands, the toy can be used with the help of an adult, or siblings/friends:

“My son sat colouring for about 15 minutes but because he has poor pencil grip he tends to tire of writing/colouring for longer periods however his 2 1/2 year old sister helped by doing some colouring too while my son kept saying thank you A you good girl!”

(Sarah’s World: http://sarahandc.blogspot.co.uk/2012/04/carddies-review.html )

Personal connection/collectability value.

A reviewer early on wrote this about her boy whose “attention span with this sort of toy can be quite limited”:

“S has particularly enjoyed his Carddies. He coloured in the background really carefully and some of his characters, making sure that the colours matched on both the back and the front of their clothes. He talked about the different members of his family, and has named some of them on the back of the background, where there are pictures of each character and a space for their name.”

This from another reviewer:

“I bought these Carddies for my 4 1/2 yr old daughter who was finding it hard to settle into school. She enjoyed colouring them in and name tagging them with the names of the children in her class, she has role played the time spent at school through her eyes with them and now knows all the names of the children in her class and is beginning to settle into school. A fantastic toy.”

Relaxing and Absorbing. My friend (whose daughter has ASD) said:

“We were meeting a friend for lunch and L asked if she could take her Carddies with her. She sat yesterday and named them all and wanted to carry on… She sat the entire time in the restaurant colouring them in and placing them in the “ballet classroom”. It was great in so many ways-so quick and neat to store away when the food came, such high quality pencils and colours AND she still has loads to do in terms of colouring and playing!! I will be taking them out with me on future trips!”

L wanted me to tell you “the Carddies are brilliant… I really love them. May many others love them too!!”

On that note, we really hope that you give the Carddies a go!

Carddies are available from Winslow Resources

Constructive Cutlery

Construction Cutlery for Picky Eaters

Construction Cutlery

Construction Cutlery

Unfortunately with toddlers, difficult mealtimes can be a given. How can parents possibly hope to make sure healthy options are included on the plate when some little ones won’t touch anything, let alone something green? With the Construction Cutlery, mealtimes becomes a fun affair instead of a dreaded struggle when their peas turn into gravel and their pasta into building blocks. Adding a little fun to mealtimes gets kids to the table and encourages them to stay there longer, which gives parents an improved chance to fill their tummies with yummy and healthy goodness.

Buy Construction Cutlery

Construction Cutlery Set

Construction Cutlery Set

The folks at Constructive Eating know this because they’ve been there when the struggle was all too real. Parents Carter & Jackie Malcolm couldn’t get their toddler to stay at the table long enough to munch on anything before he was distracted by the draw of his construction equipment toys. The imaginary world where he was in control of building and demolishing anything his heart desired was so much better than the boring reality of eating his fruits and veggies.

He was absolutely obsessed with everything that belonged on a construction site, from cranes and bulldozers to excavators and jackhammers. The stage knew no boundaries. Anything and everything became focused on construction. Before long, their child was asking to put Cheerios on the floor to act as rubble for his bulldozer. This made them ponder…  What if breakfast, lunch and dinner could become “rubble”? What if forks, spoons and pushers were the “machines”? Carter and Jackie put on their entrepreneurial hardhats, designed the fleet of Construction Utensils, and began Constructive Eating.

Since those early days, Constructive Eating has added several award-winning products to

Construction Cutlery Plate

Construction Cutlery Plate

embrace creative play at and away from table. The focus has always been on fostering a fun AND productive mealtime for parents and kids. Especially in children with sensory and developmental disorders, a positive association with food and sitting at the dinner table can be key in overcoming feeding challenges.

What parents say about Construction Cutlery

“My 5 year old son has severe apraxia of speech and autism. We’ve done three years of feeding therapy, countless hours of exercises, and so much begging for him to eat. He has about ten foods he will eat, and that is it.

I ordered the entire eating set thinking it was cute and I figured, it’s $35 let’s just give it a shot. My son just ate yogurt. A food we’ve tried over and over again without success. He just ate it, by himself, no incentives.

Thank you guys so much for making Constructive Cutlery! I was worried it was a fluke or that the novelty would wear off, but it hasn’t!

“He’s currently eating lunch- I put yogurt and peaches on his plate today. Normally that

Construction Cutlery

Construction Cutlery

would result in him refusing to eat anything on the plate. He’s actually ate his yogurt first because he loves the pushing tool so much! Seriously, this product is ingenious.”

Stories like these from parents, caregivers, educators, and therapists overjoy the workers at Constructive Eating Headquarters. Knowing that a small company with an emphasis on quality products, good business practices, and top notch customer service can make such a positive impact on the lives of their customers makes every box that leaves the door with “Constructive Eating” emblazoned in yellow and orange special.

Where is Construction Cutlery Made?

All of Constructive Eating’s products are manufactured in the USA with only the best and safest FDA approved dishwasher and microwave safe materials, so parents can feel good about what they’re giving their kids. Specialty textured easy-grip rubberized handles make it even easier for little hands to lift and hold the utensils, which helps develop fine motor skills.

When parents purchase from Constructive Eating, they’re not just getting cleverly designed and cute utensils, but an entire experience of continually fostering development, fun, and healthy eating with their kids at the dinner table.

Narrative Therapy

Narrative Therapy – The River, Roads and The World of Trains

By Gali Salpeter – Creator of Narrative Therapy tools, The River, Roads and The World of Trains

Background

Gali Salpeter

Gali Salpeter

I am an Expressive Therapist with specialisation in Drama and Narrative therapy and a background in Psychology, Sociology and Anthropology.

My fields of study, work and life are closely intertwined; I have worked and volunteered as a therapist in a few countries and I feel blessed to have chosen this field of work, which enables me to connect with, support and be touched by, so many wonderful people across the world.

I live in beautiful Norway with my husband and 3 children (my most meaningful creation).

Projective cards – underlying concepts

I began to use projective cards as a psychological tool when I was working as a therapist with children having special needs. Combining the cards with art, drama and stories proved to be very useful and I realised it helped my clients raise and share the issues they were dealing with. It supplemented the verbal mode of communication in many ways.

However, with time, I felt that something was missing; putting separate cards apart from each other in order to tell stories, was in fact “losing” the idea of flow. It looked as if there was no connection or transition between the different parts of the stories that the clients were telling. I have started to search for ways to make the images illustrated on the cards “connect” so that the flow of the stories that the clients told will become visual as well.

Narrative Therapy

Joining up the cards to create a story

The metaphors of the river and roads, flow and paths, were metaphors I found enriching when speaking of processes that people are dealing with. People often speak about journeys they make, paths they choose, steps they take or a continuum of periods in their lives.

Both the metaphor of the river and the metaphor of roads enabled my clients and me as the therapist to relate to the “whole” as made of different parts. It helped clients realise that the stories they tell are built of certain chapters and to observe the processes they described as made of many stages or several sub-periods.

Thus, using the metaphors of rivers and paths matched my goals as a therapist; to help my clients tell, observe, work with, and retell their experiences in life in new ways.

The River Set

The first set I have created is “The River”. Like most journeys, it begun with a personal experience. This time it was a sad one… My grandmothers died in a short period, I was a mother of young kids and as a way to cope with my grief, I wrote “The river story”. It dealt with my interpretation of life and death, relationships, identity and memories, strengths and weaknesses. I often use writing as a tool to process the personal experiences I encounter in life so that story almost ended up “in the drawer” like many others…

Since I was working with projective cards I came to the idea of drawing the story in the form of cards. Derived from the story, the atmosphere I chose for the cards was one of – nature – as I have perceived it. I looked for subtle stimuli, and not too much fantasy in the images drawn.

One thing led to the other, “The river guidebook” kind of wrote itself, the ideas for ways to use cards kept on flowing from my experience and imagination, and then – after a long “pregnancy” – ״The River set״ was born. Like many wonderful things, it was born out of pain but it holds the strengths of sharing hope.

Roads Deck

״Roads״ was created several years later when I was living elsewhere. I like travelling to new experiences and I have lived in wonderful countries around our globe. My journey and the paths that I have chosen (and the ones which have chosen me) always led me to interesting places both within myself and in the cultures around me.

The metaphor of “Roads” for me means that I have a road that is mine, with the obstacles I encounter and the “gifts” I find along it, my own beginnings, the steps I take and the ends. However, it is also a road that goes in amazingly different surroundings, with interesting people I was lucky and maybe brave enough to get to know. So perhaps “Roads” for me is this journey as a whole – a journey that is one and unique and “mine”, but it is also many meaningful journeys, stories, paths and periods which I have experienced with others around me.

I believe that although each of us have a unique path in life, we are changing in many ways along it. I decided that the stimuli will be clear in that deck, I wanted to use fantasy and include obvious objects. The colours and atmosphere was completely different than the ones used in ״The River ״so as the method of painting used.

In a sense I think that the sets complete one another. Hopefully having these different sets enable clients to choose the most suitable tool and image they would like to work with, in each given moment.

The World of Trains set

״The world of trains” set is being edited for print in these days. I am not objective, but I think that it is a very special set. The set is designed for therapeutic work with children in settings of individual therapy and group therapy. It contains a deck of illustrated cards, a deck of story-cards and a comprehensive guidebook for therapists. The guidebook describes in detail numerous professional suggestions for application of the cards, according to the different settings and relevant issues children cope with.

Final Thoughts

It is my hope that every person working with the sets will enjoy the opportunity of telling her/his story and the wonder of discovering its rich layers and intertwining chapters.
We all have stories waiting to be told.
Thank you for reading a chapter of mine…
Gali

The Talkabout Series by Alex Kelly

Alex Kelly Talkabout Books

Alex Kelly

Alex Kelly talks to us about her Talkabout series of books and games for nurturing self estem, social skills and forming friendships.

Can you give us a brief overview of Talkabout?

Talkabout is a complete programme that develops self esteem, social skills and friendship skills. It is based on teaching children in group settings either in school or college but can be adapted to be used on a 1:1 basis or at home. It uses a hierarchical method of developing skills where basic or foundation skills are taught before more complicated skills.

How did Talkabout come about?

The original Talkabout book came about because I was working in a FE college with a large number of young adults with intellectual disabilities and after a year of social skills interventions, and with pre and post assessments on all the students, I noticed a pattern in who was responding well to the social skills groups and who wasn’t.

It all centred around the hierarchy of self awareness coming before non-verbal skills and non-verbal coming before verbal and assertiveness coming last. I decided to put together a programme of intervention for this college based on this hierarchy and thought the name TALKABOUT was quite good!

3 years later and lots of testing and piloting, I decided it was worth publishing. Later on I noticed the link with self esteem and friendship skills so these were added to the hierarchy about 5 years later. After that I realised that what people really want are resources that are right for a specific client group, so we started with writing a Talkabout book aimed at secondary mainstream children and then wrote the Primary series Talkabout for Children because you need very different approaches to different types of children and adults.

What makes your books stand out?

They are the only social skills books that I know of that work through a hierarchy from self-awareness and self-esteem to assertiveness (and now sex and relationships). They are a total package and include all the games and worksheets to work on these skills. they also have term plans which make them very easy to use in schools as they are a scheme of work designed around academic years (I am married to an ex-teacher! So I know what teachers need to make it easy to embed into school life).

Alex Kelly Talkabout Books

The Talkabout  Series

Which features do you think will be most useful to users?

As a busy therapist or teacher, I think the fact that each book is written with them in mind so the sessions are planned, the games are ready to make up and the books are therefore pretty easy to use.

What is the one message you want reader to take away with them?

The Talkabout books have developed over 20 years to be resources that work and that children enjoy. Please don’t dip in and use activities randomly. All of my research and experience has shown me that a hierarchical approach to teaching skills is the most effective. So if necessary start at the beginning and work through for as long as you need to. In this way we are setting children up to succeed not fail.

What are the benefits of using your book in schools and private practice?

Teachers like the Talkabout books because they can work as schemes of work for a whole academic year and the planning has all been done for them. similarly in private practice the fact that it is all planned out, is obviously attractive as it cuts down on planning time.

Are there any factors or adjustments needed for Talkabout to be introduced into a school or private setting?

You  just need a group of people who need work at the same level or who will work well together.

How do you think your books help address SLCN?

Many children with SLCN also struggle with their social skills and with making friends and they can also struggle with their self esteem. So even though my books are not specifically aimed at improving Speech and Language, they are often appropriate resources for children with SLCN.

What are your future plans?

We are writing the second volume of the sex and relationships book this year. We are also doing some research into the effectiveness of Talkabout within schools Finally I am busy writing my theory book on social skills which will cover all the theory behind this subject!

Perianne Walters Reviews The Rompa Maxi Bubble Tube

Perianne

In this review of the ROMPA Maxi Bubble Tube we will explore everything about what I think is the best and most reliable bubble tube you can buy.

I will start off with a bit of back-story, when our son was first diagnosed with autism my husband and I agreed that he would need a sensory room, I myself am autistic, so I already knew what an autistic child’s sensory needs would be.

Long before we bought this excellent ROMPA bubble tube, one of the first things we bought for our son’s sensory room was a cheap bubble tube (I apologise, I cannot disclose the name of the seller or manufacturer of said bubble tube due to legal threats against us). We built up our sensory room around the cheap bubble tube assuming it was a quality item. After four months the cheap bubble tube started to leak! It had ruined about half of the special needs toys and equipment we had saved up for years for. Both my son and I had multiple meltdowns over weeks while my husband tried to obtain a refund and compensation while helping us deal with our meltdowns, eventually after around three months of much discordance and obtaining legal information from solicitors, the aforementioned seller and manufacturer paid out. I could write a book with the amount of excuses and lies they gave my husband during this time, but I wont go into that here as I want to move on to ROMPA’s amazing bubble tube and service.

My husband and I agreed that if we were to get another bubble tube, we would have to go for a quality retailer and manufacturer. We already knew a lot about ROMPA and had always wanted ROMPA equipment in our child’s sensory room, we thought things were a bit expensive at first, but trust me, you get what you pay for! We put the money that was refunded to us and saved up for months and finally bought the ROMPA maxi bubble tube, we went for the 2 metre one, because why not? We saved a lot of money by filling in the VAT relief form when going through the checkout, which your child is valid for if they are disabled, if you need more information on this, click here. There are also charities that may be able to help you afford this sort of thing for your disabled child, such as the Newlife charity.

DSC01153

When the bubble tube arrived it was already set up, no messing about with tubes and ties, it just came in one piece. We just put it in place, filled it with water, put the lid on, and turned it on, simple, just the way it should be.

This thing is tall, our son loves it, he hugs it every night watching the bubbles, plastic fish and cubes during his sensory time before bed.

The bubbles are nice and big and there are millions of them, when they start, the plastic fish and cubes bob up and down through the bubble tube weaving in and out of the bubbles. You can get the fish from here and the cubes from here.

It has a nice low pitched hum sound when its turned on, our son likes to mimic the sound.

The colours are very vivid and bright, perfect for children with special needs to help visual processing and colour recognition.

Speaking of colours, the bubble tube changes to many different colours, but we didn’t realise we could interact with it until I read more about ROMPA’s WIFI switches, we saved up for one and bought it (this one) but recently have upgraded to this one. We also got this cool talking WIFI cube here which also changes the colour of the bubble tube. the switches work with all our WIFI enabled ROMPA equipment. You can read our review of the ROMPA Deluxe 8 Colour Wirefree Controller here.

When the WIFI switch arrived it just worked, no setup, we literally opened the box, pressed a button, and the bubble tube changed colour! You don’t need any computer experience, it just works, here is a video we took of the different colours and the bubbles stopping and starting using the WIFI switch:

We have had the ROMPA maxi bubble tube for about 18 months now and its been perfect. No faults, no leaks, no problems, just what you’d expect from the makers of equipment for people with special needs.

We empty it once every 4 months to add fresher water, and in between that window of time we keep the water clean using BCB, which you can also get from ROMPA here.

Its really easy to empty too, just attach the drainage pipe that comes with the bubble tube, put the other end of the pipe in the sink, and turn the valve ….. that’s it!

If you have the money, I highly recommend this bubble tube. Our son has been so happy with his ROMPA equipment, as long as ROMPA keep pumping out quality equipment and keep up their fantastic customer service, I’ll keep buying.

If you want to buy it, click HERE.

We are not affiliated with ROMPA, we are just very happy customers – find out more about Perianne and her experience of using sensory products at http://specialneedsandsensoryplayideas.com/ or join her Facebook Group https://www.facebook.com/groups/300929950082444/.

DSC01158

Coping with Sleep Deprivation for Special Needs Families

By – Tina Baily (Twitter @TheMotherGeek)

As a special needs family, some days can be stressful, intense and very very long. Our chances to take a break or have child free time can be pretty much none existent.

People frequently say “I don’t know how you do it”. For me, that’s easy. Love. I will do everything I can to look after my children. If that means surviving on 2 broken hours of sleep a night, I will. At least for as long as I can.

In the past few years, my husband and I have developed a few ways to push through the sleep deprivation, and make our days easier. Our eldest child, Sam is 4 and has low functioning Autism. Our youngest child is 3, and she was a terrible sleeper, until recently.

Sensory LightsMy first sanity saver has been buying Sam a single bed with a pull-out guest bed underneath it. This means that on the nights when he wants me with him, I can just pull out the spare mattress and snuggle up near enough to soothe him, without lying on the floor or taking up half of his bed. This has been worth it’s weight in gold when he’s been poorly.

Sam has Sensory Processing Disorder and likes pressure. He used to wake a lot in the middle of the night, and be up for hours on end. A few people suggested we get him a weighted blanket, but our Paediatrician said these are not recommended for overnight use. In the end, we got Sam a 15 tog feather duvet. This is really heavy, so he sleeps well underneath it. The duvet is also breathable, so he doesn’t sweat under it. On really hot nights, we put the fan on, so he is kept cool.

A Blackout Blind is also a must have in the Summer for us. The second Sam wakes up, he is up for the day. If the room is dark, he will lie quietly in bed, watching his sensory lights on the walls and ceiling while I get a sneaky extra hour’s sleep in.

Sam is still in nappies, and loves to remove them. I have managed to prevent this by putting zip up onesies on him, back to front so he can’t get to his nappy. This is more for my benefit than Sam’s, as it prevents the 3am bed changes when he’s leaked everywhere, after removing his nappy.

Caffine saves the daySome days, I am too tired to function. I used to hate this, but now I accept that it is part of our “normal”. I have a stack of books / stickers / iPad games and DVDs on standby to keep the kids entertained on days when I need to take it easy and look after myself.

Having people to talk to who understand is also a great tonic. There are lots of great special needs communities out there now. Search on Facebook or twitter for #specialneeds and you’ll find lots of people who understand. The #AutismMom hashtag on Twitter or instagram is a great place to find other Autism mums.

Finally…. Caffeine! I am a huge fan of coffee and cake. I find it to be the perfect mid-morning pick-me-up. (It’s also good during mid-afternoon…. or at 4am)…!

Someone said to me a while ago that if I didn’t start taking care of myself, I wouldn’t be fit enough to look after the kids. That stuck with me. Sometimes leaving Daddy in charge while I have an hour of peace, soaking in the bath can feel like the biggest indulgence in the world.

So, these are a few of my go-to sleep deprivation hacks… what are yours?

Tina

Chernobyl Children’s Life Line Return to Minsk

There were four members of our group that visited Belarus in late April to undertake charitable support as part of our work helping the unfortunate child victims of the Chernobyl Nuclear disaster. As you might remember, back in November (read article)  we were able to take some sensitive lighting that you at ROMPA kindly helped us with, and which made a massive impact on the children who are receiving treatment in the hospital. Well, you will be pleased to know the lights are still being thoroughly enjoyed by the children at the Children’s Cancer Hospital in Minsk and we were able to also let them have the further equipment you were able to donate towards our work. So a big thank you to ROMPA in supporting the work we do in trying to put a little hope in the children’s lives.

One special moment at the Cancer Hospital was when I was asked by a child what I would be doing and I told her I would be visiting the British Ambassador the next morning and she asked me to pass on her best wishes, which I did. I also asked the Ambassador if he would reply with a personal letter which he promptly did and I took it to the girl at the hospital. She was absolutely amazed that she had received a personal letter from such an important person who didn’t know her and it was such a special moment for her. The child psychologist at the hospital told me it was the best medicine any one could give the child as it made her feel special and that someone somewhere was thinking of her and took the time to write to her. To see her face was a very emotional moment for all of us including her mother who was not the only one with tears in her eyes.

While we were in Minsk we took some diabetes testing equipment to the endocrine hospital and also visited an orphanage, the British Embassy and many other places around the City. At every place we visited we took lots of toys for the children and tried to make it a very special day for them in their lives.

After leaving Minsk later in the week we proceeded to the town of Osipovichi where we visited school No 4, the school from where we take our children from when they visit our area for a convalescing break during the summer. Whist there we had an opportunity to meet the parents and the children who are due to be coming in July and enjoy a concert in the school. The remainder of our time in Belarus was spent visiting homes and families to get a better idea of the problems these unfortunate families have to deal with on a daily basis and again there were many emotional moments as we visited these wonderful people, that despite their poor conditions always made us welcome and were so hospitable in every way.

We will be continuing with our work helping these unfortunate children and if you know of anyone who would like to join with us or host a child in their home please pass on our details to them. Likewise if there is anyone who would like to support us in any other way please pass on our details. Chernobyl Children Life Line is a totally voluntary charity with no salaries or huge on going costs, so you can be assured that any support given is used for its intended purpose and very much appreciated.

Richard A Street
91 Wharf Road
Pinxton
Derbyshire
NG16 6LH

Email: richard-street@btconnect.com
Web: www.ccll.org.uk/pinxton

Our Journey to an Autism Diagnosis

By – Tina Baily (Twitter @TheMotherGeek)

Tina & Sam

Tina and Sam

When our son was 18 months old, he still wasn’t walking, talking or responding to his name. He rocked – a lot, and bounced up and down for hours on end on his knees. I mentioned my Autism concerns to our health visitor, and we were referred to a paediatrician. Initially she said it was probably delayed development, but when he still wasn’t speaking or responding to his name at 22 Months, we began our journey towards an Autism diagnosis.

The months between our journey beginning and Sam receiving a diagnosis were really hard. I felt very lost, and overwhelmed by the whole experience. I felt like a fraud for asking about support as Sam hadn’t yet been diagnosed with anything. It was a very lonely time. I had no idea what to do to help Sam, and I was scared about what the future would bring.

As time went on, we saw more and more professionals, who gave us more and more advice. I tried to implement everything which was suggested, but eventually realised that I knew Sam best – some suggestions were none starters for him, it was as simple as that.

One thing which has always helped to get Sam to engage is shapes. Whether it be drawings, toys or iPad apps – if there was a shape involved, Sam would spend time exploring the item. I spent a lot of time doing shape puzzles with him, and this helped us to realise Sam’s potential. He is non verbal at the moment, but if you ask him to find the square, he will find it almost immediately. The same applies to most shapes, colours and numbers now. He spots shapes in places where I would never notice them.

I clung on to this, and stopped focussing on the things Sam wasn’t yet doing. By encouraging him to do the things he enjoys, Sam has developed other skills. His hand-eye co-ordination has come on massively, thanks to puzzles and iPad apps. Sam’s social interaction has improved hugely too, by playing alongside and then with him, while doing activities he loves – not necessarily the ones he will “learn” the most from.

If I had to give one piece of advice to a parent beginning their child’s autism diagnosis journey, it would be “ask what support is available locally”. I went to our local Autism family support group, and made some great friends. It was amazing not having to panic and explain Sam’s needs when he began shouting.

There is plenty of support online, too. I found the #AutismMum hashtag on Instagram and Twitter amazing for finding other UK based Autism parents. You can find me on Twitter at @TheMotherGeek, and you can read more about our autism journey at mothergeek.co.uk as well.

Thanks for reading.

Tina