Tag Archives: Dyslexia

Here’s to 2015

That’s another year done, more adventures experienced and new lessons learned.  We’re starting 2015 with a positive outlook – the switch to NG-tube and elemental feeding has already started to see some health improvements for M and we finally have a plan for moving forward that will be looking for the root cause for some of his health problems.  Both children are happy and settled at school and G is looking ahead to moving into secondary school in September. We’ve met and made friends with several of the lovely FABED families and have been able to help raise funds and awareness for this charity and the condition it supports.  I’m not sure what 2015 holds for us all, but, if nothing else, I’ve learned to hold tightly to my hat as it’s certain to be a bumpy ride!

Wishing you all a happy, ssuccessful and peaceful 2015.  May your wishes and dreams be fulfilled. 

 

 

Merry Christmas!

May your Christmas be filled with love and laughter; times of happiness and of reflection; family and friends…

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…and may 2015 be a year that brings new hope, understanding and peace.

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Beating the Bullies – Anti-bullying Week 2014

November’s proving to be a busy month, what with Armistice Day (11th), Children in Need (14th), World Prematurity Day (17th) and this week it’s the turn of Anti-bullying week (17th-21st).  The aim of the week is to raise awareness of bullying and encourages children, young people, schools, parents and carers to come together and work towards stopping bullying for all.  There are no official statistics about the prevalence of bullying across the UK, but recent reports state that almost 45,000 children spoke to ChildLine about bullying during 2013, a worryingly high number and one that’s unlikely to scratch the surface of the problem.

Bullying is defined as Repeated incidents of physical or mental abuse (teasing, taunting, name calling, threatening, isolating) of a weaker person by a stronger person.”  Stronger is not necessarily defined by size, but also includes those who are more confident or more able to pinpoint a weakness in the person they are victimising. The sad reality is that this naturally makes disabled children or those with special educational needs a prime target for bullies and they are more likely to experience bullying in school and in the wider community that other groups.  The focus of this year’s campaign is to eradicate bullying for these vulnerable individuals in particular.

This focus has struck a particular chord with me this week as M has been dealing with some bullying over the last few weeks at school.  Some of the boys in his class have been teasing him about his allergies by saying that they are allergic to him and then pretending to be physically sick. This has had a knock-on impact in the playground, where the same children have then been avoiding playing with him, leaving him feeling isolated and on his own.  He has some good friends, who have stuck by his side and defended him when he’s felt unable to do it himself; and his big sister has lent her support too by watching out for him whenever she can and inviting him, and his friends, to join in games that she’s playing with hers.

Unfortunately, M’s complicated needs – dyspraxia, dyslexia, EGID and food allergies – make him an obvious candidate for attention from bullies, who only need the smallest difference to focus in on and attack. We’ve taught him to stand up for himself without being aggressive or rude, to ignore whenever possible the comments made and to walk away when the going gets tough; but it’s not an easy issue to tackle.  Right now, he’s anxious about their response when he finally has his tube fitted and is even worrying about how things will go next year, once G has moved on to secondary school.  Don’t get me wrong, his teacher and the school have been proactive in dealing with the bullies, but they can’t take away his fears or his belief that he’s not being heard.

Sadly he’s not on his own.  Children with complex medical needs can feel isolated by their illness as they struggle with feeling different and the questions of why they can’t be like their friends or why they are so frequently absent from school.  Even those with better known conditions, such as T1D or asthma, may have limited contact with others of the same age who are dealing with the same issues and I can only imagine how much harder it is for those with rare illnesses, who may know no-one else with the same diagnosis in their area.  A lack of true understanding about their medical needs and the impact on their everyday life can add to their frustration and the sense of being on their own.  Adding bullying to that already tumultuous mix is often a burden too many and these children may head into a downwards spiral that can result in poor self-confidence, depression and even self-harm.

What can we do?  I don’t have an easy answer to that difficult question.  As a parent I can educate my children to respect the differences of their peers and not to belittle those who don’t conform to society’s notion of “normal”.  I can encourage them to enjoy friendships with everyone and not just those who have similar interests or hobbies.  I can teach them that sometimes they won’t see eye to eye with their classmates and that those differences of opinion is what will challenge and shape their own beliefs.

And as a parent to children who stand out from the crowd, I can help them find their feet in our world, to stand strong when challenged and to see the value in their very uniqueness.

Time for a Dyspraxia update

Over the last 18 months since we received a diagnosis of dyspraxia and visual dyslexia for M, he’s been making some progress and it was good to have a review this week with his Occupational Therapist to see just how far he’s come and what he should be aiming to achieve next.  When he was first assessed, it was noted that he had significant issues with his upper body strength, which was leading to weaknesses with his fine and gross motor skills.  He struggled to hold his cutlery or pencils correctly, couldn’t tie his shoelaces, wouldn’t tackle riding his bike and had handwriting that, at best, bore a passing resemblance to ancient hieroglyphics, assuming they’d been scrawled out by a spider meandering meaninglessly across the page.

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Shoes tied by M

Meal-times have become easier, thanks to the sets of caring cutlery I invested in soon after we met his OT for the first time.  M has grown in confidence as he’s mastered the co-ordination needed to cut up his food himself, although constant reminders to actually use his cutlery are still a main feature at our dinner table!  After a year of having to ask for help to tie the laces on his football boots, M decided he was going to crack that challenge over the summer and having so determined, succeeded quicker than any of us expected, himself included, and was rewarded by 2 new pairs of trainers – with laces – whilst we were out in Florida.  As for the bike, well it’s still something of a no-go area for M right now, but the draw of being able to cycle to his godmother’s house along our local cycle-path, may be all the impetus for learning that we’re going to need this autumn.

However, the one skill that still needs a lot of work is that of his handwriting and was the key area for my discussion with his OT yesterday.  Over the last few weeks, I have been trying to track down some additional support with his literacy skills as we have become increasingly concerned that his school-work will start to suffer if an improvement isn’t made soon.  I contacted both our local Dyslexia Centre and the local branch of Dyslexia Action, to find out what support might be available to M and similar answers came back from both.  There was an opportunity for weekly, 1 hour small group sessions to develop his writing and literacy skills, but although it sounded good, there inevitably was a downside.  The sessions are only run during the day, Monday to Thursday, which would mean that he would need to miss around 2 hours of school a week, by the time you allowed for pick-up and travel.  As the helpful Dyslexia Action representative warned me, “You’ll have to get the school on board first, as they may be reluctant to allow him to miss that much school each week.”

I mused over the decision and discussed it at length with Mike.  Whilst we both know that the time is critical for M right now and he really needs that support, we are also waiting for an admission to GOSH, which will mean at least a week off school.  On top of all his other regular appointments, I felt that it was just too much time absent from his friends and his learning and so decided to put this plan on a back-burner for the time being until we have some more information about the admission.

At this point, like some sort of guardian angel, his OT expressed her own increasing concerns about his handwriting skills and suggested the perfect solution to our dilemma.  She has offered to visit M in school for an hour a week for 6 weeks and will work with him and a member of staff, teaching him how to properly form cursive handwriting and write in a size that makes his writing legible.  handwritingShe will make sure he is sitting correctly, holding his pencil in the right way and knows how each letter should be formed.  His class teacher has said that M is reluctant to use cursive writing, believing that he needs to print instead, so the OT will show him some examples of work from other children she has worked with to convince him that this is the way to go.

I am so delighted that this is being offered by an OT who is as concerned about M’s handwriting and the impact on his learning as we are and, what’s more, wants to actively do something about it. As well as teaching M the skills he needs, she will also be teaching the member of staff about what he needs to be doing in class and how they can encourage him to continue the good work once her 6 weeks are up.  M’s SENCo, who also just happens to be his class teacher this year, has already agreed that the school are happy to accommodate the OT’s visits and now I’m just waiting for confirmation of when the sessions will start.

‘looming marvellous!

I know, without a shadow of a doubt, that G & M are not the only children across the UK, or indeed the developed world, who are currently obsessed with the latest craze to sweep the nation:  Loom-bands.  Every day as the children walk up to school with their friends, we pass child after child sporting an armful of bracelets made from these brightly coloured elastic bands.  Mike and I even have our own growing collection, consisting of bracelets and rings made by both G and M, in a variety of colours and patterns.

For the uninitiated amongst you, and I know there will be a few, you can create a range of unique jewellery, or charms, or just about anything else you think you might like, from relatively little.  All you need is:

one of these....

one of these….

...a lot of these...

…a lot of these…

 

 

 

 

 

 

 

…a vivid imagination and an endless supply of patience.

From the simple single-loom bracelet (where we unwittingly started before I knew that each pattern had a name) to the Starburst and the Inverted Fishtail, my children have been kept occupied for hours designing and making a constant stream of new creations for us to admire.  I have discovered loom-bands lurking in unexpected places and have had to think on my feet to enable emergency repairs when, at the last moment, a previously undiscovered fatal flaw threatens the final piece of art.

Just some of the children's creations

Just some of the children’s creations

I love this latest craze.  It’s not prohibitively expensive as you can pick up a bag of 600 bands and 24 s-clips for under £1; it appeals to both boys and girls, with M and his friends spending time during their mid-morning or lunch-time break to teach each other new techniques; and my pair are spending time after school to work on their bands together, rather than spending the time arguing.

Even better, it is proving to be a great way for M to hone his fine motor skills, which is such a critical part of the occupational therapy for his dyspraxia.  Putting the bands onto the loom is tricky and he has to focus on what he is doing to make sure they go in the right places.  M has also taught himself how to make some of the different patterns using just his fingers, which is really challenging the strength and mobility of his fingers and hands.  We’re yet to see whether this activity improves his pencil grip and his motor skills, but I’m grateful we’ve found something he loves to do which should prove to be extremely beneficial.

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Rainy days and Mondays

I suspect we must be like every other family when it comes to unexpected free time or the need to find rainy day activities.  We have lots of discussions about what we could do, followed by M complaining that “there’s nothing to do” or “I’m bored” or “you won’t let me do what I want anyway, so there’s no point in asking” and eventually finishing with a decision that at least 3 of the 4 of us agree on, sometimes, if we’re lucky.  This past weekend was no exception.  Amazingly, there was no football training or game for M, no parties for either child and no school events to contend with as it was the start of the May half-term.

20140428_130100Chalk Wall Snakes & Ladders – this was invented by M and Mike and has been the source of hours of fun for all the family.  One wall of M’s bedroom is painted with blue chalkboard paint and they decided to create a gigantic Snakes & Ladders board on the wall.  It featured some individual-looking snakes as well as ladders of varying lengths and can be changed and adapted as the fancy takes M.  Once designed, they played the game using a dice and coloured chalk to mark their progress on the board.

bananagramsBoard games – I doubt we’re the only family in the world to indulge in a board game or 2 on a weekend afternoon.  The kids have been obsessed with two games recently: the Game of Life: Fame edition, where you’re a fledgling celebrity trying to make it big; and Bananagrams, a game that’s similar to scrabble, but each player works individually to create a crossword grid from their tiles.  The latter has become a new and firm favourite in the household, although M struggles sometimes with the challenge of creating words from his letters.  Even though he won’t always play on his own, he is always more than happy to give suggestions to anyone else playing.

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Egg painting – this is an activity usually associated with Easter as the photos show, but I see no reason why you couldn’t do this at any time of the year.  M was fascinated in seeing how exactly you blew the eggs, whilst G quickly learnt just how delicate the resultant egg-shells were.  They were occupied for a good half an hour or so before they had had enough and had run out of eggs to decorate.  G decided to go for 3 unrelated designs for her eggs, whilst M themed his eggs around a Matador, bull and red cape – don’t ask me, I have no idea where he gets his ideas from, though I’m guessing it must be something to do with his father.  Mike identified the eggs from 3,300 miles away via Skype:  I can only assume he saw something I didn’t.

lightsabersLight Saber battles – nothing overly original, though G, M and Mike appear to have created their own battleground, almost Hunger Games style, called “Schwing Schwang”.  This involves each having their own Light Saber of different colours and indulging in a series of highly complex fight moves as well as striking what I can only describe as their best battle poses. This is all accompanied by hysterical giggling from G and ear-piercing shrieks from M.

spacehopperWashing Line volley ball – This offering is an alternative to regular volley ball.  It involves the use of the washing line strung up between the garage and house, a space-hopper and a sense of humour.  We played in teams, had 5 lives each and had to catch and throw the space-hopper from side to side without dropping it or letting it bounce out of the poorly indicated boundary lines. Challenging, but great fun for a sunny afternoon.

popcornFamily film night (or morning, or afternoon) – Finally, there’s sometimes nothing to beat sitting down as a family to watch a film together.  Our biggest problem was agreeing on which to film to watch, with M and G inevitably choosing the same 5 films over and over again, whilst any suggestion from Mike or me to watch something different usually ended in tears.  So, I came up with a rota system that keeps everyone happy and has seen the children enjoying some films that they never thought they’d like.  Now we take it turns to choose the film and no one film is allowed to be chosen again until we have worked through everybody’s turn twice.  I drew up a grid on a piece of paper that lives near the TV and faithfully record who has chosen the film and what it was.  So far we’ve enjoyed a mixture of Disney, Pixar and classic films and would be hard pressed to say which has been our favourite.

 

Our birthday boy

Over the past few days, we’ve been celebrating young Master M’s 8th birthday.  It’s hard to believe that it’s been that long since he first crashed into our world and whilst the time hasn’t been easy, it certainly has flown past fast.  The last 8 years have been filled with a lot of laughs and smiles and it’s exciting to see just how our “little bean” is growing up.  Obviously, we’ve had a lot of health worries along the way – this blog wouldn’t exist without them – but those haven’t overshadowed the joy and good times of having M as part of our family.

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M has become a little boy with a big personality.  Like most other boys of his age, he loves everything Lego, Star Wars and Angry Birds and is a keen member of our local under-8s football team, where he can be found most Saturdays running around the pitch and even occasionally kicking the football.  He loves discovering new things and although he’s not the most academic of children, his passion for new facts, knowledge of the world and probing questions have been flummoxing his teachers for years.  M does struggle due to his dyslexia and dyspraxia, but the strides he has made since we got the diagnosis last year are amazing and he never lets them stop him being an active participant in class. He enjoys school now more than I ever thought possible and is keen to get there each morning to spend the day with his friends.

DSC02717He adores his big sister and even though he spends most of his spare time planning new ways to wind her up, he will be the first to leap to her defense or comfort her when she’s upset.  He will go off to search for a scrap of her “rag” when she’s in tears, though he will also hide it from her when he’s in one of “those” moods.  They love nothing more than playing together in the garden and enjoyed most of the weekend’s sun by washing my car with M’s brand new super-soaker.

P1010012Perhaps more unusual is his flair for all things theatrical.  M has never been backwards in coming forwards and I have photos of him stepping up to perform karaoke age 4.  He loves to perform and is always looking for the next opportunity to do so.  His current favourite musical is “Singing in the Rain”, though he’d probably also mention “Lion King”, “Matilda” and “Oliver!” in no particular order.  M has a dedicated dressing-up wardrobe and has fancy dress to meet every occasion.  No matter what character you’re looking for: be it “Odlaw” from Where’s Wally, “Bert” the chimney sweep from “Mary Poppins” or the “Ringmaster” from “Ninja Meerkats”; I can guarantee that M will have already been there and worn that!

When it comes to coping with his EGID and his diet, M is a trooper.  He takes his medicines with the minimum of fuss and accepts the food restraints with relative good humour.  He’s not perfect by any stretch of the imagination, far from it, and really struggles at times with frustration and anger that this is his lot in life.  Yet he nearly always bounces back and keeps going with a positive attitude.  The latest challenge of no potatoes has been one of the hardest M has had to face and he has really found it difficult to accept that he might have to avoid them longer term; but even he has had to agree that things have improved since we whipped them out of mealtimes and is now hoping that our next GOSH appointment will bring a food trial instead.

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To celebrate in true style, I once again attempted to bake the double and created 2 cakes for M to enjoy – one for our family dinner and one for him to share with his friends at his party. The first he chose from my cupcake decorating book and the second was inspired by G and M’s current passion for all things “Despicable Me”.  It took two long and extremely late nights, but I achieved my goal, was pleased with the results and, more importantly, so was the birthday boy himself.

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Dyspraxia support

Courtesy of shoreline-pt.com

Courtesy of shoreline-pt.com

As well as going back to school, we’ve also had M’s referral appointment for Occupational Therapy to support him with his dyslexia and dyspraxia.  We had been warned that we might have to wait up to 9 months for the referral to be made, so you can imagine my delight to be offered an appointment just 3 months into the process.  The therapist, D was fantastic and a lot of the health professionals we’ve seen along the way could learn a great deal from her approach to helping M.

Unsurprisingly, she had not come across EGID before, so had spent some time researching the condition and understanding how this might impact on M before we got to the appointment.  She had read thoroughly the reports completed by the Dyslexia Centre, school and us, but then spent more time clarifying points with me, taking into consideration the change of schools and asking what we were hoping to achieve through OT.  As we chatted, D observed M as he played with the various activities she had set out in the room, including a bat and ball, foam football and low-level balance beam.  Her conclusion was that he most needs the support in improving his fine motor skills, which will directly impact his academic prowess and that working on those will then lead to an improvement in his gross motor skills and balance.

She then switched to assess his writing, cutting and cutlery-holding skills, all of which I had mentioned as areas that I felt needed some work.  M showed his reluctance to write by insisting on discussing each task she set him, obviously in the hope that he could browbeat her into leaving them untouched, but he had met his match.  D listened to his comments, acknowledged them and then prompted him to get on with what she had asked.  He may have grumbled each and every step of the way, but he did them all and enabled D to assess as she needed.

Creating and then dismantling paper-clip chains

Creating and then dismantling paper-clip chains

D suggested a number of games using everyday items – clothes pegs, marbles and paperclips – and explained how these would help build his finger strength.  She set him challenges and played the games with him, so that he could understand what was required and she could check that he was doing them correctly.  What impressed me the most was that D gauged accurately how many games to introduce and how long to play each one such that she didn’t overwhelm him with suggestions.  Playing these games at home several times a week will bring about improvement and I foresee a number of family challenges to see who can perform the best.

A paper plate sun with peg rays to attach every morning

A paper plate sun with peg rays to attach every morning

D also agreed that using a writing slope at school will make a massive difference to his writing ability.  As it is highly unlikely the school will have one lying around, the OT department will arrange to lend one to the school for 3 weeks, which will allow the teachers to assess the difference it makes to his work. This will be followed up by a written recommendation and a school visit, where D will be able to observe M in the classroom setting and see what else might be done to support M and help him achieve, before meeting with the SENCo and suggesting how some funding from their SEN budget will help.

This school visit will then be followed up by a return appointment with M himself, whereby she can see if the daily activities she has suggested have helped and whether school have followed her recommendations and funded the special equipment he needs.  I have already invested in a set of “caring cutlery” to help him at meal-times:

Courtesy of completecareshop.co.uk

Courtesy of completecareshop.co.uk

Whilst we continue to struggle with his gastro health, it is a huge encouragement that there is something useful that we can actively do to improve M’s school-work and performance. He is a bright and articulate child and it will be both fascinating and exciting to see how things develop over the coming months.

A new term

September marks the start of the new school year and an opportunity to look ahead and plan for the coming months.  For our household, September has seen M starting at his new school as well as a number of appointments to make and keep regarding his health. There’s been so much to deal with that, for my own sanity as well as ease of reading, I’ve spread my thoughts over a couple of blog posts.

Courtesy of carevan.org

Courtesy of carevan.org

School-wise, the start of term has gone amazingly well for both M and G, who have enjoyed meeting their new teachers and are slowly settling down into their new school routines.  G was a little nervous on the first couple of days meeting her new teachers (she has 2 who job-share), but her class is the same, so she’s with her friends. It’s hard to believe that my first-born is starting in Year 5 and makes me feel old to realise that I’ve been parenting for nearly a decade.

Sadly, the continued use of Movicol meant that M wasn’t able to start back without wearing a pull-up as we had hoped.  The risk of an accident during school hours and the massive negative impact this would have on him left the school and us in agreement that the pull-up was a necessary evil, and M reluctantly agreed.  It has been hard to judge his real feelings about this as he has been deliberately disengaged from the decision-making, which has been no surprise at all.  He just doesn’t want to face this new reality at the moment and who can blame him? His biggest fear is that his classmates might find out, but the school and I have worked alongside each other to make sure this possibility is minimised.  The pull-up is hidden by his underwear – a sensible pair of trunks long enough to cover it completely – and school suggested he uses the classroom toilet to change for PE, away from prying eyes.

His sensitivity to his “different” lunch-box has been handled well by his new teacher, Miss K, who suggested a special circle time at the end of the first week to introduce his diet and health issues to the class.  By the Friday, M had decided he was open to answering any questions his new friends might have and, as we expected, most of them revolved around what he could or couldn’t eat.  Following that Q&A session, Miss K has also suggested that perhaps we could arrange a “tasting” session for the class, so that they can see, taste and understand some of the foods M has to eat.  M loves the idea of being able to share his diet with his new friends and is drawing up a list of what to take into school as we speak.

Which will make the final cut?

Which will make the final cut?

School have also made allowances regarding his use of the toilets and impressed me by thinking around the matter of which toilets he would need to access.  They considered what could happen if the toilet was in use when he needed to go and have given him special permission to use the Year 6 boys toilet, which is just along the corridor.  They’ve also agreed that as long as the adult in charge is aware he’s dashing off to the loo, then he can forego the need to ask permission before he leaves the classroom or playground. All important when time really is of the essence.

All of this is a refreshing change for us and a real affirmation that we made the right decision in choosing to move schools.  Their positive approach to working with us and with M means that we all feel a great deal more relaxed about the school day.  School are keen that the day is as stress-free for M as it can be and the effect of this on M is clear, as so far we’ve had no toileting issues at school and he is the happiest we’ve seen him in a long time. They really have restored my confidence that M will be supported as he needs and the lines of communication are very much open for us all.

Well, it might be a bit more high tech than this... Courtesy of www.lifeschocolates.com

Well, it might be a bit more high tech than this…
Courtesy of http://www.lifeschocolates.com

My child with Super powers

As a parent, we all go through that experience of self-doubt and belief that we’re doing it all wrong.  As a parent of an unique child, a child with unexpected needs, that self-doubt is part of your every waking moment.  You begin to wonder if it’s something that you did, right or wrong, that has led to the position you find yourself in.

A good friend recently sent Mike and me a link to this wonderful blog post that really spoke to her, and our, hearts.   Through it I discovered the truth that I have children with super powers, rather than with special needs.

Courtesy of kotaku.com

Courtesy of kotaku.com

We all know that it’s not easy being a parent and when you add into that mix an illness or condition or special need for your child, you rapidly begin to wonder why.  Almost every day I question why M has this condition.  Is it something I did, or didn’t do during my pregnancy?  Is it faulty genetics on my side, or on MIke’s, that have led to these problems?  Could I have done anything to change the outcome that my boy has to live with?  Of course, the answer is no.  He is who he is and who God made him.  I don’t have the answers as to why his life has been so medically complicated and why he continues to have to fight a daily battle for good health, but I also can’t live my life playing the blame game.

I struggle when talking to expectant Mums who are holding forth that they don’t mind whether they have a boy or a girl as long as the baby is healthy.  I remember saying the same thing myself, so why is it that that wasn’t the card we got dealt?  I smile and nod and bite my tongue, because I can’t promise that for them that’ll be their experience.  I hope it is, I really do, but I know that there are no guarantees in life.  We are the exception to that rule.

During a recent conversation, I was asked whether I wished I could turn the clocks back and make different decisions to those I made 10 years ago.  I didn’t have to stop and think because I know the answer. No.  The mountains may be high and treacherous, but the view from the top is amazing and my answer is no.  The valleys can be dark and bleak, but the sunshine reaches down and touches those darkest of places and the answer is no.  I may get knocked down far more times that I thought possible and struggle to get back up and keep on with the fight, but my answer is still no.  I would love for life to be easier for both M and G, I wish for their medical problems to disappear in a heartbeat, but I love them and I love being a parent to children with super powers, even if the going is sometimes really, really tough.

Lake Huron, Canada

Lake Huron, Canada