Tag Archives: occupational therapy

It takes a village

village

Do you know that quote?  There’s a chance you might associate it with American presidential hopeful, Hillary Clinton and her 1996 book of the same title, but in fact it comes from an Igbo and Yoruba (Nigeria) proverb and has a sentiment that is echoed by numerous other African sayings.  It recognises the great value of having community involvement in a child’s upbringing, not just for the child and immediate family, but for the extended family and local community too.  As I have mentioned so many times before, we are incredibly fortunate to have an amazing community surrounding us, who are unbelievably supportive, and none more so than our fantastic village school.

Since day one, when G first headed in through their gates, we knew that this was a place that would offer our children not just a great education, but also a safe and secure place to grow and develop, all within walking distance of our home.  The children have had the opportunity to build strong friendships with others living nearby that will hopefully continue into their teenage years and beyond.  In the 2 years that M has been there, we’ve seen time and time again just how invaluable the school community is, not just to M, but to G and to Mike and me too. The impact of M’s ever-changing health has been particularly profound in the last couple of years and there is no doubt in my mind that the unfailing support of their school has been a steadying force for us all.

Without the readiness of the Head and other key members of staff to accommodate M and all his needs, we would have struggled to keep his education a priority this year and I doubt I would have been able to continue working.  Their willingness to have M in school as normal and to learn the intricacies of his NG-tube and feeding regime has allowed me to stay in my job, confident in the fact that this is a group of people dedicated to including M in every planned activity and who have taken on that intense in loco parentis responsibility without a second thought. This year in particular has tested their mettle with the demands of not just feeding tubes and complex allergy requirements, but of occupational therapy, dyspraxia and dyslexia added to the mix too.  His teacher, Mrs M, has been amazing and she approaches every new challenge with great positivity and an unparalleled sense of humour. www.amazon.comEven the minor hiccups encountered along the way – non-stop beeping, blocked tubes, leaking pumps and soaking wet clothes to name but a few – haven’t derailed her and that attitude has helped M cope remarkably well with all the changes this year has thrown at him.  I cannot thank her enough for being the rock that M has needed during school hours.

Equally, Miss K, G’s lovely Year 6 teacher has been a real blessing to us as a family and to G in particular.  She has encouraged G every step of the way and helped build her confidence throughout the year.  M’s hospital stay in December was difficult for G as he and I disappeared off to London for 2 weeks and couldn’t be around to help celebrate her 11th birthday or enjoy the end of term build-up to Christmas.  What made a big difference was Miss K, who was fully aware of all that was going on, made herself available to G whenever necessary, understood that emotions were high and made allowances when needed, and stayed in regular e-mail contact with me during our stay and also during the Christmas holidays, so she was as prepared for where things stood with M as the rest of us.  She is moving on from the school at the end of this term and I, for one, will miss her, especially as I was hoping she would be M’s teacher for his Year 6 year.

It’s not just the teaching staff who have done their utmost to give us the support we depend on, but the parents and children too and this past week I was left speechless by the thoughtfulness and compassion of M’s class.  Following his presentation during EGID awareness week, this group of enthusiastic 9 year-olds discussed different ways they could support him and focused their attention on the fact that he has to wear a backpack all morning, which contains his pump and his “food”. This is what happened next:

“We decided, as a class, that we would all wear a backpack for a morning so that we are able to understand a little of what M has to go through each day. Therefore, on Friday 10th July, it would be great if all of 4M could wear their backpack to school and keep it on for the whole morning!  If you can make it weigh about 2 and a half kilograms that will be amazing as that is the weight that M carries around each day.”

20150710_111650On Friday I had the privilege of going into school to see this amazing group plus teacher and teaching assistants with their backpacks on and to express my thanks, not just to the children, but to Mrs M and the school for encouraging and allowing them to show their support in this tangible way. His classmates have adapted well to M’s tube and accept it as an essential part of him.  They’ve asked questions and been interested in the whys and wherefores about it and then just forgotten all about it and carried on with day-to-day life, which is exactly what M has needed.

There have also been shows of support from parents, including one from a Mum I’d never met before and doubt I’d recognise again.  We were travelling back home late from our last GOSH appointment after a long, hot day in London and arrived back at our local train station.  As we reached the stairs of the railway bridge, I became aware of a fellow passenger catching up with us and smiled with her as she chuckled at the inane chatterings of my night-owl.  I paused to let her go past, but she slowed her pace to match mine and started an unexpected conversation:

“I just wanted to tell you that my children are at the same school as your son and came home and told us all about his presentation. They both raved about how amazing it was and how much they had learned from watching it and asking him questions.  I just wanted to tell you how impressed they both were, especially as they now understand a little more of what he’s having to cope with and we all think he’s incredibly brave.”

The conversation carried on until we reached our cars and said a quiet good-night. This for me is the advantage of having not just a child who stands out from the crowd because of his tube,Colorful solidarity design tree but also a community who is brave enough to have the confidence to speak out words of encouragement to a near-stranger because of a shared experience and the desire to add their voice to offer support.

From helping take G to school early in the morning to having my tubie home for tea; and from working hard with M to improve his handwriting to encouraging G to reach her potential and aim for the stars, our school, its outstanding teachers and the families who go there have helped us out along the way. This academic year has been a tough one, but we’ve survived all the bumps in the road with the loving support of the truly exceptional community that we live in.

Christmas decorations with a M twist

Whilst we are processing all that has happened in the last 3 weeks – think hospital admission (M), 11th birthday (G), 15th wedding anniversary (Mike and me), Carol services x 4 and metres of wrapping paper – I thought I’d share some quick snaps from a Christmas project that M undertook before he headed into GOSH.

20141126_204723[1]The challenge came from school – to create a unique Christmas tree decoration for a competition – and M knew exactly what he wanted to make.  A couple of weeks earlier, we had been watching a Christmas film (don’t ask me which one as I honestly have absolutely no idea, other than it starred Tori Spelling and was loosely based on the Dickens classic “A Christmas Carol”) and he had been fascinated to see the children threading popcorn into a garland to hang onto the tree.  He was adamant that this was what he wanted to make for the school competition, so Mike popped a saucepan of corn kernels and M and G sat down at the coffee table to start their threading.

20141126_204743[1]Bedtime arrived quickly and M asked if he could continue the job upstairs once he was ready for bed.  As M is rarely asleep much before 11pm on any given night, I swiftly agreed, knowing that this would be a great activity to keep him occupied and stop him bothering G too much, as well as a sneaky way to get 20141127_084222[1]another finger exercise to improve his fine motor skills into his day.   Whilst M was upstairs threading his garland, I was downstairs looking for simple instructions on how to make loom band candy canes to add an extra festive twist.

 

Six feet and six candy canes later, the garland looked amazing and M was proud to enter it into the competition.

20141127_084149[1]

 

(Oh, and that Christmas film we’d watched? – A Carol Christmas.  Well, I couldn’t leave you wondering!)

Busy days

Now that Halloween and Bonfire night are behind us and Christmas is fast approaching, there’s finally a little time to look back and reflect on the start of the new academic year.  September seems like a lifetime ago and yet was a busy month with appointments right, left and centre that have had a lasting impact on decisions about M’s long-term care.  We had appointments with GOSH, a new community paediatrician, M’s OT and with CAMHS; and I needed to be the thread that linked them all to ensure that M remained at the centre of their focus and that all agencies were working together to provide the best support they could.

Courtesy of travaasa.com

Courtesy of travaasa.com

The OT’s review was everything we needed it to be and she has already started going into school once a week to work with M on his handwriting skills.  The clinical psychologist he meets with fortnightly through CAMHS is slowly building a relationship with him and gently pushing him to talk about how he feels about life with EGID and the frustrations he experiences.  As for the new community paediatrician, who was recommended by our local hospital, well, lets just say we won’t be rushing to meet with her again.  Her complete lack of understanding of his condition was glaringly evident as she suggested that regular toileting and a sticker chart were the answers to all our problems.  How I refrained from saying something very rude is nothing short of a miracle!

The most important of all these, for us, was our regular appointment at GOSH with the gastro team charged with M’s care.  The restricted diet and increased medications over the last 3 years have not brought about the results we’ve been aiming for and M continues to be symptomatic a lot of the time.  We have become increasingly concerned about his emotional well-being as he struggles with the impact of EGID and multiple food allergies on his daily routines and I was determined to come away from that appointment with a tangible plan in place.  Despite our best efforts with the challenging treatment suggested by the local consultant leading into the summer, our worst fears were realised when the registrar told us that M appeared to be impacted again and we would need another course of fairly heavy-duty laxatives to empty his bowel.

planningThat led into a lengthy discussion about where we’re headed and what the most sensible next steps for M’s care are.  Short-term plans are all well and good, but we now need a long-term care plan put in place.  He agreed that we can’t keep limping from one appointment to the next and promised to discuss M’s current situation with our consultant.  Medical terms such as “pellet study“, “elemental diet” and “manometry” were bandied around and I am glad that, thanks to the support from other FABED families, I have a reasonable layman’s understanding of what all these terms actually mean.

We left the hospital feeling that we were beginning to making some progress in dealing with the problems that continue to dog M’s every step and a short-term plan that would start to deal with the current impaction issue.  The longer term decisions would be discussed both internally and with us before anything was settled on for definite.  A follow-up appointment with the consultant herself was made and our step was just a teeny bit lighter as we felt our concerns were being heard and addressed.

Courtesy of abercrombierealestate.com

Courtesy of abercrombierealestate.com

However, since that day, over 7 weeks ago, I have spoken to GOSH at least once a week and almost daily over the past 10 days.  The improvements expected haven’t happened and so the decision has been made to admit M into the hospital for further testing.  We need to understand whether his bowel is working as it should or not as that will give us a clue as to the direction we need to head.  We have also agreed with his consultant that the diet and medicines just aren’t helping his hugely allergic colon and so have made the decision to remove all food from his diet and follow the elemental diet via NG-tube for a while.  This should give his bowel and body some much-needed time to rest and recuperate, something I believe it so desperately needs.

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.

20141104_184432

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.

20140630_194813               20140630_194827

 

 

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

Where there’s hope

“Where there’s hope, there’s life.  It fills us with fresh courage and makes us strong again”

– Anne Frank, The Diary of a Young Girl

This has been a quote that has resonated with me over the last week. As I wrote in my last blog, we have been struggling with a relapse that has left us all feeling despair and wondering what our next steps were destined to be.  Dealing with IT changes and financial year-ends at work, as well as M’s challenging behaviour at home, has left me feeling battered, bruised and emotionally fragile.

In the midst of the week, I desperately needed a little hope to remind me that there is more to life than the rubbish I’ve been dealing with recently and it came on Thursday, from what was, to me, a surprising source.

school

M is fast-approaching the end of his final year in Infants and will be moving up to our local Junior school in September.  G has been there since Christmas and has really flourished and we felt that it was the right place for M to continue his education.  We haven’t had the support we had hoped for or that we are entitled to from M’s current school and I have been concerned as to whether things would improve when he made the move.

On Thursday, I arranged a meeting with the Head teacher, SENCo (Special Educational Needs Co-ordinator) and class teacher to discuss all of M’s needs from the EGID to the newly diagnosed dyslexia and dyspraxia.  I spent considerable time reading around what we were entitled to in terms of support for all of these issues, spoke to our local authority about whether we could hope for any help from them and what exact questions I needed to be asking to make sure my boy gets the help he so desperately needs in the classroom setting.

meeting

I went to the meeting with the lowest of expectations as I know how hard the world of SEN can be from following the experiences of others and talking to those in the know, but I was quickly proved wrong.  The staff members were interested in M, asked questions along the way and made suggestions of how best to help him within the classroom.  They made copious notes about what small things we have already found help him and where we need to make improvements to support him more.

The SENCo had already put a phone-call in to his current school to ask for information from them about what procedures, if any, they’ve put in place for him and had read through the report from the Dyslexia Centre which contained the Educational Psychologist’s recommendations for help.  She checked whether we had made the referral to Occupational Therapy, which our GP did during the week, as she was happy to do that for us, but felt it would be quicker coming from the GP than from school.

Even before the OT referral eventually happens, the school are happy to support his dyslexia and dyspraxia by:

  • the use of a writing slope (provided by us!) in the classroom
  • the use of triangular pencils and pencil grips (again from us) in the classroom
  • photocopying or printing worksheets onto yellow paper as this helps M to see writing clearer
  • the use of lined, yellow paper when he’s writing or doing spelling tests, where practical
  • the use of a stress ball to warm his right hand before he starts writing
  • encouraging him to use a yellow overlay when he’s reading as this helps him track the words

Then we got to the biggie, the matter of M’s EGID, multiple food allergies and his current frustrations and emotional issues surrounding it.  I printed out a letter for the school, which I sourced from FABED and which I could personalise to highlight M’s exact condition, allergies, medicines and reactions.  Both his class teacher and the SENCo gave the document a quick scan and then listened intently as I explained the finer details of what this condition entails.

One of my biggest concerns was how they would handle it if M experienced a soiling accident at school.  We have been fortunate that over the last 3 years of his education, this has happened only a handful of times, but given his current relapse and all the anxieties of moving up to a new school, I wanted to pre-warn them that this could be an issue.  They instantly agreed that there would be a need for additional support for M in case this happened and wanted to discuss it further with the Head, particularly as they don’t currently have a shower or suitable facilities to make changing him easy.  At no point did I feel that this was an inconvenience and whilst I don’t expect miracles, or funding, to happen overnight, I am confident that they will find a way to make sure his needs are met.

ticklist

I had discussed the meeting with M the night before as I felt it important that he understood that the school wanted to help him and also to gain an insight into whether there was anything he was particularly worried about regarding the move.  M has had some issues in building friendships and he was worried that the other children in his class would ask him a lot of questions and then be mean to him because of the food allergies.  He is overly sensitive and as emotionally fragile as me at the moment and this was obviously playing on his mind a lot.

I raised M’s concerns and was thrilled to hear his class teacher instantly suggest that they discuss his food allergies as part of the circle time during the first week of term.  They will be talking about all the children and asking them to share something about themselves, so will be a perfect opportunity for M’s allergies to become known in a non-confrontational way.  M can choose to have as much involvement in that discussion as he wants and will help him understand what the other children are told about him.

The staff were concerned and interested enough to reassure me that they would do everything they could to support M in school.  They will be working on a health care plan as well as some short-term targets that will cover all of his health issues and educational needs.  They will ensure that all adults who come into the school, and not just those dealing directly with M, are made aware of his multiple allergies and that his photo, name and list of those allergies will be displayed in the staff-room.  Most importantly, they will maintain a strong communication link between us and them, to make sure that any problems that arise either from their point of view, or from home, are dealt with quickly and not left to develop into something worse.

hope

My difficult week has ended with some hope that, whilst I can’t control M’s health, we will be able to influence his education and that hope really has given me some courage and has renewed my belief that we are strong enough to walk this path.

Parent Power

I don’t know why anything surprises me any more when it comes to dealing with our local authority or the NHS or those involved in M’s education or, indeed, any combination of the three, but yet again, I have been amazed and astounded to find that the best way to get support for him is for us to take the initiative and forge the way, showing the professionals the best and most efficient way to get the job done.

support

We first discovered the power we wielded as parents approximately 12 months ago, when we came to the conclusion that M needed some speech and therapy help.  Actually, that’s not exactly true.  We first discovered it when we insisted on following our instincts and getting the referral to GOSH, but it would be accurate to say we were reminded of this yet again a year ago.  M was a late developer when it came to his speech and for a long time was extremely difficult to understand.  The only people who could understand what M was trying to communicate was G and me, which led to frustration all round as I was continually having to interpret for him and he hated the fact that nobody understood what he was trying to say.

Two things happened last summer that made us decide that we finally needed to address the issue.  First of all, M failed his phonics testing at school as his pronunciation suggested that he didn’t know his phonics.  His teacher hadn’t wanted to raise his speech as an issue with us before because of all the other health worries we were dealing with, but when Mike expressed his concerns with her, she was quick to concur.  Despite our requests, we were told that there was nothing that the school could do to refer us for speech and language therapy and so we needed to see what, if anything, we could do ourselves.

The second was during a visit to our local National Trust property for a fun day out.  G and M befriended another little boy and started playing quoits with him and his father.  When the father asked M to repeat for the third time how old he was, “six”, and then turned to G to seek confirmation of M’s age, I could see the frustration reflected on M’s face and determined then and there that we had no other choice.

speeh

At that time, I thought that the only way forward was for us to pay for private speech therapy for M and so set Mike the task of speaking to a couple of local speech therapists about starting the process and seeing if they could help M or not.  Within minutes of his first conversation, Mike was told something startling.  Not only could M’s speech problem be identified – he pronounced his sounds through his nose, known as “nasal fricative” pronunciation – but there was definitely something a therapist could do to help and, what was more, Mike and I could complete a parent referral on the NHS for treatment.

We filled the forms, returned them to our local health authority and waited for the assessment date, which was scheduled for about 6 weeks later.  The assessment completed, the therapist agreed that he should receive therapy within the school setting and 3 months later, M started 12 weeks of SaLT (Speech and Language Therapy) 2-3 times a week at school, all courtesy of the NHS.  If we had listened to the advice of M’s school, we would have paid for the privilege of the therapy that M was entitled to and that has changed his speech and his confidence beyond recognition.

Now, a year on, we are again in a position where we could have ended up paying privately or waiting an inordinate amount of time for something M is entitled to receive.  One of the recommendations made following M’s diagnosis with dyslexia and dyspraxia is that he receives Occupational Therapy (OT) to help develop his motor skills and his muscle strength, which, in turn, will improve his handwriting.  The Dyslexia Centre gave us details of local, private OTs who would be able to provide M with the therapy he needs to see him develop.

OT

I was told by another Mum, who’s child receives OT support through our local authority, that the waiting list for NHS-provided OT is in the region of 8-9 months, which is a long time to wait for something that could make a significant difference to M right now.  It was here that I hit the next wall of confusion.  I was advised to ask our GP to refer him, but she informed me that the only way to refer M for local OT was through his school.  Now, given that M’s school hadn’t identified there even being a problem academically and were surprised that we had taken the decision to have him assessed for dyslexia and dyspraxia, I had no confidence whatsoever that we would get a referral from them, particularly after the whole speech therapy debacle.

So, once again, Mike took to the phone and made some strategic phone-calls.  His first point of call recommended calling our local cottage hospital as it provides physiotherapy and OT for the community. One quick phone-call to there and we had an answer.  We needed to print out a copy of M’s report from the Dyslexia Centre which details the benefits of OT to him, write a quick covering letter and send it directly to the Physio department at the hospital, whereupon they would review it and let us know.

Today, this plan changed again.  The Physio department called me to ask why we had sent them the report.  I explained the advice given and she was stumped.  They don’t work in OT with children at the hospital and so advised that I called Children’s services at the local authority or alternatively the nearby Children’s Hospital.

You can probably guess where I’m going with this, but no sooner had I called Children’s Services, than I was advised that OT was run out of a different location and I needed to contact them direct.  I have just spoken to a wonderfully helpful lady from Community Children’s Services, who has told me I need to go to either the school or the GP to get the OT referral M needs!  Back to square one.

square1

Don’t get me wrong, I’m a big fan of the NHS and am impressed by the range of services and support they are able to provide, free of charge, to so many people, but once again, the link between NHS, the local authority and the school is an inefficient one.  Over the course of the last week, I have gone full circle and am now back to where I started without making any discernible steps forward.  However, I am now armed with the advice that I need to get the referral made and a name for the GP to send it to.  When the lead-in time for much needed help is so long, every moment wasted is frustrating for us all.  The support that M needs is going to have to start with us and I will be fighting his battles, and any that G faces in the future, before anyone else wants to get involved.  Maybe re-training as an Occupational Therapist would be the quickest solution to our current need, or perhaps I shall return to the wise advice offered by Dr Google to see if I can pick up any tips from there to try whilst we wait for the referral to be made…

What else can I say?  Parent power rules!

Pictures July 06 030