Tag Archives: Special education

And so it continues….

After last week’s unexpectedly busy week, I was hoping that this week might slow down a bit; or at very least, enough to allow me to draw breath and properly put some thought into my blog posts! However, things often don’t quite work out as planned, especially when you’re me and I’ve found that the roundabout hasn’t quite slowed down enough just yet for me to get off. There’s been little time to stop and smell the roses…or the coffee…the latter of which is probably more apt as it’s been huge quantities of the black stuff that’s getting me through each day right now.

With work full of “stuff” – legal, finance and HR bits and pieces to get my head round; Mike slowly winding down to his last few days in his current job and both children back at home after a fantastic week away for G (hurrah!) plus rehearsals for concerts, fundraising plans to finalise for Over The Wall and some rather meaty health/education issues to tackle for M, I can honestly say I’m looking forward to a quiet-ish weekend to tackle the growing piles of ironing that just don’t appear to be shrinking.

Whilst we’re in the midst of dealing with the challenge of school not really understanding all of M’s educational, physical and mental health needs, I found this wonderful image this week, which truly summaries what I want both him and G to remember and hold on to as they grow up. They really are so much more than their school achievements and exam results #kindhearts #generoussouls #greatfriends

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Brave New World

If you’re on any social media platform, be it Facebook, Instagram or Twitter, the chances are that your timeline will have been flooded this week with the ever popular first day photos like this one, on what an old friend humourously terms “National Stand in Front of your Door Day”. The start of every new school year always brings a list of tasks that need to be completed, which includes for us more than just name-labelling the new school uniform and buying huge amounts of school stationery that will potentially have disappeared by the end of the first week, but also making sure that we’ve dotted the “i”s and crossed every single “t” relating to the health needs of both children.

This year felt like even more of a challenge as M moves up into the same secondary school as his big sister and we find ourselves dealing with the reality of different teachers for every subject, a year group that’s bigger than the whole of his junior school and the need to educate the school in the world of M. The good news is that having reached the end of the first week, things have not gone horribly wrong and on the whole, it has all been a huge success. Every evening, M and I have looked through his timetable for the next day to discuss what he might need to do to make sure all his needs are being met as they need to be. I was as delighted as he was to discover that his educational needs have been noted on the tutor group register and so his teachers are aware that he needs extra support in relation to his Dyslexia and Dyspraxia. We still need to iron out the finer details of note-taking in class and how he prepares his homework for each lesson, but our unexpected find of yellow-tinted sunglasses whilst on our summer holiday have been an added bonus to helping him read the worksheets he’s given.

Disappointingly, though not altogether surprisingly, the level of awareness about his EGID and food restrictions has not been what we hoped it might be, but whilst my hopes were high, my expectations were truthfully quite low and we knew there would be work to be done in this area. He went to the Student Services with his medicines on the first day and by day 2 was confident enough to ask for a set of yellow cards, which gives him permission to leave class early to take them, jump to the front of the queue with 2 friends when it comes to lunchtime and go to the toilet whenever he needs to without having to wait and ask permission. Our biggest challenge was the one we feared it might be, that of the Food and Textiles classes that he will be taking this year. His cookery teacher was not aware of his dietary restrictions or just how important avoiding the cross-contamination risk is for M and so I’m waiting to talk to her after school on Friday to discuss just how we go forward with the lessons**. We are all keen for him to take these lessons and learn to cook, but Mike and I are very aware of the need to protect his fragile mental health and so will be working hard to make sure the cookery lessons don’t become a challenge too far for him.

As for G, my big girlie quietly and confidently started in Year 9 and is looking forward to the year ahead. She’s a little anxious already about making her GCSE choices later this year, but we have been spending time reassuring her that she won’t have to make those decisions on her own and that we will help and support her every step of the way, as will the school and her teachers. This year is a little different for G as they are now splitting a number of her classes into sets and her hard work over the last couple of years has stood her in good stead as she has been placed in the top 2 sets for almost all subjects.

It really is a step into a brave new world for the whole family and I can’t wait to see what the year ahead will bring for us all.

** So that conversation has happened today and I’m delighted to say was a really positive one. Mrs J has agreed that M can use ingredients and adapted recipes that are safe for him wherever possible and will work at his own station to help reduce the cross-contamination risks for him. She is as keen as we are to make the lessons a positive experience for him and will be regularly touching base with me to make sure we’re all getting it right.

#NEAW2017

May 8th: No matter what’s going on, there’s no escaping #EGID or leaving it at home, even for one day. For all those facing exams over the coming weeks, their EGID will be just one more challenge that they have to survive.

Today, this is for M – and his schoolmates and the other Year 6s across the country who are taking their SATs this week. We’re so proud of you: of the obstacles you’ve already overcome and your determination to succeed. Just remember, the results really don’t matter.

UnSATisfactory Pressure

Since the introduction of the National Curriculum to UK education in 1989 and the creation of the Standard Attainment Tests (SATs) in 1991, everybody has had an opinion about them and few are afraid to make that opinion known. For 25 years, controversy has raged about the value of these tests and who, in fact, the tests are really testing – is it the children or the schools? The one thing that is not in any doubt is that these tests put our children under a huge amount of pressure to perform well, even when their skills perhaps lie in a different direction and little allowance is made for those who find formal testing an unbearable strain.

Even though it’s been 2 years since G was in Year 6, I can well remember the stresses and strains that the prospect of the year-end SATs put on her. Small, but telling signs of the pressure she felt were revealed through changes in her behaviour at home and her already shaky confidence in her literacy ability took a further battering as she struggled to understand what the tests were demanding of her. Her homework steadily increased to ensure that all maths and literacy elements were taught, revised and well-established by the time the tests themselves actually happened and she spent Saturday mornings working with my 29Mum, a retired Year 6 teacher, to fine-tune those skills that were proving a little elusive to my school-loving child. Her hard work and focus throughout the year stood her in good stead and we were all proud of her year-end results, most of all because they rebuilt her belief in herself. Despite that previous experience, I knew that M’s start in Year 6 would herald a very different set of experiences and that’s absolutely proved to be the case.

M has been expressing his worries about the SATs since well before he even reached Year 6. He loves reading and his imagination and vocabulary are impressive, but the ongoing struggles with his handwriting and spelling due to his dyspraxia and dyslexia have really knocked his confidence when it comes to his literacy skills. This September saw the very real manifestation of the stress and pressure he’s put himself under and pieces of homework and classwork alike have left him in tears. I realised just how bad things had got when I received an email from his class teacher expressing her concern about his wobbles in the classroom. She knows him well, having been the school SENCo since he started at this school in Year 3 and also his Year 4 teacher when he had his NG-tube, so she’s fully aware of his additional educational needs and personality quirks and felt that his response was completely unlike him.

We have been working hard with M to develop the basic knowledge that is missing due to the delay in getting a diagnosis for his learning needs and are seeing a slow, but steady improvement. He attends weekly lessons at our local Dyslexia centre and his teacher there is working on his phonic and spelling knowledge in particular. We have agreed with school that he will only learn the spellings set by the Dyslexia centre as there is a greater need to ensure he has a good base on which to build his literacy skills, than worrying about the finer nuances of prefixes and suffixes for the time being. M uses the Nessy computer program, which was developed to teach reading, writing and spelling skills through a series of fun store_icon_nessyreading-01and interactive games and challenges. He has access to this both at home and at the Dyslexia centre and will soon be able to use it during some of his intervention group sessions at school. I have also just invested in the Nessy Fingers course, which will teach him to touch-type, a skill we are all agreed will be of huge benefit to him, especially when he moves on to secondary school next September. The ability to make notes on a laptop or tablet will ease some of the angst he already feels about the workload he will face in Year 7 and we are hoping to investigate some dictation programs that will also make his life just that little bit easier.

During Year 4, M’s occupational therapist came into school and taught a series of lessons focused on improving his handwriting and teaching him how to form his letters correctly. He now has the most beautiful joined up handwriting and, whilst it may take a lot of time and effort to do, he shows great determination to produce a well-written, well-structured and well-spelled piece of work. Even better, M recently received a certificate at school recognising his hard work with the diary entries he had been asked to write and congratulating him on some great ideas and marvellous handwriting. He was so incredibly proud of being awarded that certificate and his confidence and self-belief soared as a result. All too often over the last few years, M has been praised for his courage in dealing with his EGID diagnosis, NG-tube and food allergies, so it was great to see him receive recognition for the hard work he’s been putting in to improving his handwriting over the last 12 months.

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Truth be told, at the end of the day it really doesn’t matter what M’s SATs results are. They will not be a reflection of the bright, brave, cheerful boy that he is or of the huge strides he’s already made from an educational standpoint. They won’t show his breadth of knowledge on random topics such as the Illuminati, or expound his theories on anything Star Wars or his opinions about Brexit and the American Presidential race. They will never reveal the medical and health hurdles he’s overcome since the day he was born. Rather they will be a single snapshot of the ability of my 11 year-old to perform under certain pressures on a given day in May and will have no bearing on the journey he will eventually embark on for the rest of his life. They really are an unnecessary and unsatisfactory pressure that M and his friends could do without.

March comes in like a lion

Ever had one of “those” days? You know, the ones where you’re already insanely busy and barely have time to breathe and yet everything that could conceivably go wrong, does go wrong to an unbelievable extent, plus those few extra and unexpected hiccups and challenges that appear along the way. After the last 48 hours, I appear to be heading into not just one of “those” days or even one of “those” weeks, but more realistically, one of “those” months. The next few weeks promise to be extremely busy and I’m beginning to wonder how I’ll get everything done on time and in the right order. You know it’s a sad state of affairs when we’re only on the third day of the month and I’m already counting down to the start of the next one.

Wales from space, courtesy of UK astronaut, Tim Peake

Wales from space, courtesy of UK astronaut, Tim Peake

The month started with our rather low-key marking of “Dydd Dewi Sant”, or St David’s Day for those of you not au fait with the Welsh language. Fortunately, this simply required some frantic scrabbling around my drawers hunting out the daffodil brooches that the children and I wear every year and remembering to pin them securely to school jumpers before heading out the door. The children were both keen and proud to wear their daffodils, though equally unimpressed that their friends didn’t know why they wearing them and so took the opportunity to quickly educate their classes. If I’d been more organised, I might have posted on the day itself, but I wasn’t and I didn’t, so this is me recognising that celebration of my heritage now.

But after that gentle start to the month, things have already started to ramp up. The next four weeks include:

Gotta love my left-field boy - who better than Ford Prefect from HitchHiker's Guide to the Galaxy!

Gotta love my left-field boy – who better than Ford Prefect from HitchHiker’s Guide to the Galaxy!

  • World book day and required costume x 1
  • parents evenings x 2
  • school book fairs x 2
  • M-friendly croissants (eek!) for French role-play at school with just 3 days advance notice to attempt adapting my MEWS-free recipe
  • Mothers Day
  • riding lessons
  • a 10th birthday (how did he get to be a decade old?)
  • birthday celebrations, including themed party and cake
  • class assembly x 1
  • dentist appointment
  • hair appointment
  • GOSH appointment
  • Easter
  • Performing Arts Exams x 2
  • school play, which translates into costume provision, rehearsals and performances
  • Spa day – a late birthday celebration which will be much-needed as it comes in the middle of the busiest week
  • events linked to school topics which will undoubtedly require some inventive cooking from me
  • preparations for a sibling camp for G, which gives her a week away with other youngsters in similar situations and, more importantly, a week away from M

gin-and-tonI’m sure that there will be things I’ve already forgotten and likewise, there’s no doubt that there will be more items added to my list as March passes by. Needless to say, I will be blogging about many of these occasions and just how I overcome the challenges of taking my M-friendly cooking and baking a step further than I ever imagined possible. Once all of these things are out of the way, it’ll be time for a well-deserved drink and, in case you’re wondering, mine’s a large gin!

A pain scale for every season

My last blog post about M’s interpretation of his pain and how important it is for his medical team to understand him sparked a series of interesting conversations both on-line and in real life about just how effective pain scales can be for those who suffer from chronic pain. So many shared their own experiences of how their children express their pain and adapt to a new “normal” based on what their average day looks like and the symptoms they assume to be something that everyone has because they’ve never learned any different. What was most fascinating was the array of ideas and examples of the different pain charts out there that were sent to me and I thought I’d share some of them with you:

painG’s godmother shared this pain scale image with me and I love the wording that is attached to it as it sums up to a tee how M has described his levels of pain over the years. From the magical unicorn of no pain at all which happens occasionally, to the breaking point of inconsolable sobbing and unbearable pain that little can ease, I’ve seen M pass through every stage of this chart on all too regular a basis. I doubt the colours, images or facial expressions would appeal overly to him, but it helps to clearly explain how he copes to those who need to know.

charlie_brown_pain_scale-170452A fellow FABED Mum sent me this one saying, “It’s the only one that’s ever worked – I think it’s because apart from the last face, they aren’t very emotional, so she is prepared to admit to them. There is a Lego one, but the emotions depicted on the faces is *extreme* – I think it’s more for a paediatric A&E type thing. So a kid with a normal pain/health experience would probably find it helpful, but the level of distress the pain correlates to isn’t much help for someone who has made this into their normal…I do think these pictorial pain scales are good – pointing is so much easier than talking, to start the process. R finds the words ‘annoying/uncomfortable/miserable/horrible’ very helpful and she even sometimes uses them without prompting.” The recent release of the latest “Peanuts” film will no doubt lend added appeal to this Charlie Brown themed scale.

legoThis third one I discovered through Twitter and was posted up by @2tubies, whose 6-year old son helped make his own pain chart for the school environment with the help of the school SENCo and his Mum. They used Lego figurines to depict how he might be feeling and offered some easy solutions for his symptoms. This solution-based approach is one that I find works well with M and have started using it more and more over the years. I rarely give M the option of staying home from school when he’s feeling unwell, but will instead list out those solutions I think might ease not only his pain, but also the whirlwind of emotions that is so frequently tied into what he’s feeling on a physical level. Whilst he was still being tube-fed, I would always start with the offer to slow down or even stop his pump for a limited amount of time and then followed that up with pain relief or a hot water bottle. My final question has always been what M thinks will help him the most and given he has a clear idea of what I’m suggesting, then we have always been able to find a solution that works for us both. Whilst giving these choices verbally works well at home, I imagine that presenting them in a pictorial fashion would make great sense in the school setting.

Of course, the ideas behind these pain scales can easily be extended to cover other physical and emotional needs that our children may have when outside of the home. When G was younger and dealing with her own health challenges, one of her fantastic teachers introduced the concept of a “magic marble”. We had discussed the use of a password, a word that was random enough to not be misinterpreted as a genuine contribution to a conversation and which would indicate that G needed help, but she was at an age when she was reluctant to vocalise her needs and the use of “rhinoceros” actually stuck out like a sore thumb most of the time. Instead, G kept her marble somewhere safe and easily accessible at all times, be that her pocket, bag, drawer or table, and just needed to give it to her teacher or place it on the teacher’s desk to indicate she needed some support. No other child was aware of the significance behind this marble and consequently didn’t bat an eyelid if they spotted her handing it over, assuming that she’d probably just picked it up and was handing it in. It was an easy way for G to communicate her needs about a sensitive subject and gave her a sense of ownership over a situation that was otherwise lacking her control.

Signal LightAt G’s secondary school, they have included traffic light coloured pages in the back of the pupils’ planners and the children are encouraged to use them by putting the relevant colour facing up on the desk if they need some help during a lesson, but are too worried or nervous to ask. For some children, a “traffic lights” approach using counters or cards can also be effectively used to indicate how they are feeling in any given situation, where red can indicate their sense of losing control or not coping with the environment surrounding them. The opportunity to be tactile with the counters may also help children with sensory issues order their thoughts and be more able to express them when asked. Even if the child is not able to share what’s troubling them, a clear plan of how the teacher or adult in charge should respond to each colour will change that child’s perceptions and experiences away from home. Similarly, M’s school uses a “Fist to 5” approach to their work, where fist indicates a lack of understanding and the need for some help, and 5 means they are confident and happy to carry on on their own.

Whatever the system used, these scales encourage a child to communicate with the outside world about how they are feeling and coping, even when they don’t have the words to express it.

More than a smile

It all started with a simple compliment that was probably given without too much thought, almost a throw-away comment, but the words, planned or not, had a profound effect months ago and still do. I had walked M and G to school after a particularly difficult night with M,  following on from a couple of really tough days and I was tired and emotional as I left the school grounds. Passing their Head at the gates, I gave a small smile, a nod of my head and a quick reply to his question about how M was feeling. His next words stopped me in my tracks and even now continue to resonate in my memory, especially when things are feeling a little more challenging or tiring than normal:

“I just wanted to say that I admire your constant smile and upbeat attitude about everything. Your positivity is reflected in the way both children deal with whatever’s thrown at them in the classroom and in life.”

My garbled response was a variation of my stock answer:

“What else can I do, but smile? If I didn’t I might end up crying, but that won’t help M or G or me; and it won’t change the way things are…” (I shrugged) “…besides, if I don’t smile and get on with things, who else will? That’s my job as Mum.”

That might be true. but I know a lot of people who wouldn’t be able to smile about it. They’d feel hard done by and resentful of the hand they’ve been dealt, their response would be focussed on complaining – that simply isn’t you or the children.”

I don’t know if the exhaustion of a failed food trial and a bad night’s sleep had made me more sensitive to the world around me, but his words had an impact that I felt resonating deep in my soul and gave a lightness to my step that certainly hadn’t been there 10 minutes earlier. All the way home, with unexpected tears in my eyes, 11987081_10153905230214523_3086822525667980358_nI pondered what he had said to me. After all, am I really that unusual in my response? I don’t feel particularly unique in my attitude and, believe me, I can certainly have a moan with the best of them. I suddenly had reason to reflect on how I present our situation to the outside world and why I smile, even at the most difficult of times.

I smile because, despite everything – the difficult pregnancy, the premature birth, the EGID diagnosis and the decision to tube-feed – I have a lot to celebrate. I have 2 amazing, beautiful, cheeky, intelligent children, my children with super powers, who astound me regularly with their unexpected insights into the world and make me smile. Whilst I might not be able to say truthfully that they are both “happy and healthy”, the wish of every new parent as they await the arrival of their latest addition, they are growing into young people I am proud to say are mine and fascinating individuals in their own right. They might have their struggles to manage, but they are here with me and every day with them is one more opportunity to cuddle, to kiss and to share their lives. As a family we have a lot of fun and there’s always a reason to have a giggle, laugh out loud and just smile together, even at the darkest moments.

Of course the truth is that, in many ways, my smile is also much, much more than a reflection of the joy I feel when spending time with my nearest and dearest. It is also my most effective disguise. If you look hard enough, there will be times when you might notice that the smile doesn’t quite reach my eyes or that my smile is perhaps a little bittersweet. Those are the days when it’s been hard to fight the urge to crawl back under the covers and pull the duvet over my head. The days when getting up, getting dressed and just being is a massive success.12049331_865332913546071_5149015929277272601_n The days when it’s been hard work to put one foot in front of the other and not just get started, but keep going too.

And I’m not alone. Out there in the real world are a huge number of parents who are facing the same struggles, fighting similar battles and often surviving a reality that is far harder than the one we face each day. I have been privileged to meet and get to know some of these superhero parents through our shared experiences and I see that same positive and undeniably brave approach to life reflected in each and every one of them. They are often the parents who just a tiny bit more weary at the school gates, a little more contemplative at the end of each day and a lot more determined to make the most of every moment they have because they know just how precious those minutes are. They will be the ones who will shrug off your questions about their well-being and turn the focus firmly back to you and yours. Not because they don’t want to answer, but because they know that if their emotional floodgates are opened, it will cause a tidal wave that will engulf them and make keeping their heads above water just a smidgen harder to do. And they will be the parents that tell you they don’t consider themselves particularly special or outstanding or unique because this is their life, they know they can’t change it or their children and nor would they want to. M might end up being the cause of many more grey hairs than I’m ever going to admit to, but I wouldn’t have him any other way; he wouldn’t be him any other way; and those parents’ love for their children transcends the unexpected difficulties they’ve been presented with.

I want to finish with a beautiful thought that a friend shared on FB when we were reflecting on this thought-provoking blog post and our own life experiences as special needs parents:

“That’s the thing…we weren’t given these special children because we are special, they make us that way with how amazing they are.”

superhero

A Super Tubie of my Own

Courtesy of feedingtubeawareness.com

Courtesy of feedingtubeawareness.com

This week is #feedingtubeawarenessweek, a week that our family is embracing with every ounce of our being this year.  Last year I wrote about our 2 previously brief encounters with a NG-tube, knowing that there was an ever-present chance that M might end up needing one at some as-yet-unspecified point in the future.  Just 12 months on and the state of M’s health due to his EGID means that a NG-tube is now part of our everyday family life.  The aim of the campaign this year is to dispel the myths and misconceptions that surround tube feeding and to show that adults and children can live their lives and have fun with the tube in place.  A tube is often the path to improved health and development and should be embraced as such by us all.  Their theme is “The truth about tube feeding”.

Picture1M’s friends and class-mates have accepted it as very much part of who M is and have been amazing at looking out for him at every turn without leaving him out of their games.  One friend was so intrigued by the tube and how it worked that I spotted him peering up M’s nostril to see where the tube went, just before M opened his mouth wide and pointed out that the tube could also be seen at the back of his throat – how I love the honest interest of 9-year old boys!  He was more bothered by the Year 3 children at school, who he often caught staring at his tube, but he developed his own coping mechanisms and when asked what “that” was – a question often accompanied by a finger pointing towards his nose – he started telling them it was “…nothing, but a mere figment of your imagination…”, before walking off, leaving in his wake a stream of very confused 7- and 8-year olds.

In light of all this, I was chatting to M this afternoon about his tube and people’s attitudes towards it.  I was interested to find out how he feels about strangers staring and what response he would want them to give instead.  His reply fascinated me as it expressed clearly how much more awareness is needed about tube-feeding and the impact had on those living with a tube. He didn’t mind the idea of people asking me about his tube and the reasons for it, but he isn’t yet comfortable with having to deal with those questions himself.  However, the most telling statement was this one:

“Adults should know not to stare, but sometimes they do and I don’t know why”

and that, in turn, made me think about how I feel about M and his NG-tube.  Hospital, home and support groups all exist within a protective bubble, where nothing is unusual and normal is defined by each individual and their particular needs.  It’s only when you go out into the outside world that you suddenly come up against opinion and prejudice and the harsher side of life; against people who don’t understand that this tube is bringing nutrition and healing to my child and who find themselves unable to pull their eyes away from the tube stuck to the side of his small face.

Courtesy of timemanagementninja.com

Courtesy of timemanagementninja.com

We’ve been lucky and haven’t experienced negative comments or unwanted interest.  Yes, I’ve seen the intrigued looks or double-takes as passers-by register his tube, and I’ve received the sympathetic smiles from other parents as they’ve watched me attaching his pump or silencing the alarm, but nothing more.  We’ve been fortunate to have the most amazing support from the families and friends who are part of FABED, many of whom have been in the same boat at one time or another and know how it feels to be suddenly following a slightly different path through life than the one we thought we were on.

Today, I found an article written by Traci Nagy, the founder of the Feeding Tube Awareness Foundation, in 2013 to discuss the importance of feeding tube awareness and thought I’d share with you this excerpt that sums up for me just why awareness matters so much to families like mine:

“It matters that people understand something about feeding tubes other than Terry Schiavo or that silly KE diet.  It matters that they know there are well over 200 medical conditions and diseases that can lead children to need extra nutritional support through tube feeding.  It matters that they realize that these conditions aren’t always visible, and that looking “normal” doesn’t mean there isn’t more going on inside.  It matters that they know that the feeding tube can be thought of like any other medical device in that it helps you do what you can’t do on your own…for now.  It matters that they understand that the benefit is that children get the nutrition and hydration they need to grow, develop and thrive.”

20150208_181917So, this week we’re the family proudly sporting the “I love a Tubie” t-shirts accompanied by the live-wire that is our very own “Super Tubie”.  Stop and say hello and don’t be afraid to ask me questions, but let M get on with whatever he’s doing.  We’re hoping to raise awareness and are happy to start in our community, after all, we know that every journey begins with a single step.

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.

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.