Tag Archives: Education

Feeling normal

Courtesy of evotivemarketing.com

Courtesy of evotivemarketing.com

One of the hardest parts of M’s EGID journey is that he no longer feels like a normal child and is massively aware that he stands out from the crowd.  Every day is filled with numerous medicines to be taken, carefully planned meals, aches, pains and a constant awareness of needing to make sure he gets to the toilet on time.  As I’ve alluded to before, M is incredibly self-conscious about his condition and spends a great deal of time worrying that he will be picked on or bullied because of his illness and restricted diet.  He has a tendency to isolate himself in group situations with his peers, though he will spend hours chatting to any available adult who’s prepared to listen.

We refuse to let his chronic illness get in the way of his life any more than is necessary, so he goes to school, takes part in after-school clubs and has friends home for tea just like all his friends.  However, every new thing he participates in has to be carefully assessed and I spend a lot of time talking to teachers and organisers about M, his condition and the consequences they might have to deal with.  We have been lucky that we have never come across anyone who isn’t prepared to work with M’s needs and accommodate them so that he can take part.

fish

A recent week has been a perfect example of how wonderful it can be when M can feel like part of the crowd and not stand out for being so different.

Both G and M have been attending our local Stagecoach theatre school for a number of years and enjoy performing.  They were lucky enough to be part of the 25th Anniversary celebrations for Stagecoach back in March and took part in a massive performance of CATS at the Birmingham Indoor Arena.  We are also avid theatre-goers and love nothing more than seeing a musical on stage.  When I heard that the Youth Music Theatre Academy (YMTA) were running a drama workshop for a week this summer and that they were going to be learning and performing routines from a hit West-end musical, I knew I had to sign the 2 of them up.

G and M have been excited about this opportunity for weeks and, since the start of the summer holidays, have been counting down the days until the course began.  By some strange quirk of fate, Mike and I had booked tickets to take them to see this show on tour the weekend before the workshop began, long before we even knew about the course and it was the perfect introduction to the week.  What made the performance even more special was that some of the cast members were coming out to teach on the course during the week and we spent the interval musing over who the kids might get to meet.

The only grey cloud on the horizon was the difficult time M was going through with his health in the lead up to the course.  By the Thursday of the week before, it was evident that he wasn’t going to find the week easy and I needed to be on site with him for those “just in case” moments that might happen.  Fortunately, Jo (the course organiser) had no issue with my presence and welcomed me and M on board with an excitement that meant a lot.  When you have a child who’s chronically ill, then it’s these little acts of inclusion that make all the difference.

I spent the week sitting quietly with my trusty laptop, tablet, mobile phone and books in a corner tucked away from view, armed with snacks, coffee and anything and everything M might need.  The children knew I was there as a security blanket for them both, but I wasn’t an ever-present reminder that there was anything wrong, especially to those who were meeting M for the first time.  He sang, danced and acted his heart out, learning new routines, perfecting familiar songs and most of all, having an amazing and fun time.  We managed his medicine and his toileting with the minimum of fuss and I doubt that any of the other children really realised that there was anything different about him.

Courtesy of www.oscars.org

YMTA – this Oscar’s for you!

The Friday performance to the parents was fantastic and a real testament to the talents of those who had happily given of their time that week to teach the youngsters some new skills.  We were amazed by how much had been achieved in such a short amount of time. My thanks have to go to Jo, Rosie, Joe, Holly and Zach, who didn’t let M’s EGID phase them, but supported and encouraged him every step of the way.  He had an amazing time and can’t wait for the next workshop to be arranged!  Best of all, M had a week where his health didn’t stop him from taking part and he was able to feel and be as normal as any other child who was there.

Proud Mummy moments

A little while ago, I wrote a post about everyone needing a hero and pondered on who M and G would adopt as their heroes as they got older.  This week I’m adding to my choice of heroes and am including my children at the top of my list.

In their own ways, they have been brilliant over the last few weeks and I am so proud of them both.  This post is a tribute to them and their awesomeness and will act as a good reminder to me on those occasions when they’re pushing my patience to its very limits.

Pictures July 06 019

Marvellous M

This week I’ve had M’s school report and Stagecoach report to enjoy.  I was equally thrilled with both.  I expected the Stagecoach report to be glowing, after all, as his drama teacher stated, “M was born to perform on the stage”, but I was a little more apprehensive about his school report.  I know his behaviour is impeccable there, but academically this has been a tough year.  The last 5 weeks, since we got the dyspraxia/dyslexia diagnosis, have seen a real turn-around in his attitude to his school-work.  All the aids we’ve put into place have seen him make huge strides forward and he’s much more confident in how well he can do.

To my delight, we also finally got to see the short charity film that M took part in about 6 weeks ago.  It focussed on Domestic violence and is hard-hitting though not overly graphic.  He performed well and enjoyed every moment of the filming.

He’s also understood that G has had to focus on her own school-work (see more details below) and has given her space to just sit down and get on with it.  I was immensely proud of his attitude on the last night of working on it, when he had to entertain himself for the best part of 2 hours as G and I reviewed, finalised and polished her final effort.  I heard not a word of complaint from him and he regularly checked in with me to make sure I knew where he was and what he was up to.

However, it’s not just his reports that have made him my hero this week.  It has been his approach and stoicism to taking his medicine.  As I’ve mentioned several times, his recent flare-up has been hard and has really knocked his faith that things would improve.  The revolution of Grandma’s jam, as mentioned in a previous post, has helped enormously when it comes to his new medicine.

To put it simply, he’s taking it.  Despite feeling poorly, hating the taste and with a depleted appetite, M is taking all his medicines every day without argument, or at least with the minimum of fuss, because he knows he needs to and there is still a small spark of hope that this will help hiding somewhere inside.

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Gorgeous G

I’ve also had the pleasure of G’s music, school and Stagecoach reports to read.  Each report commented on her hard work, positive attitude and determination to give 100% to every new task set.  Despite her nerves, she has performed solos on her clarinet at school and in the end of term performance for Stagecoach and really gave her all.  She listens well, takes instructions and applies them to the task in hand.  She doesn’t have M’s academic struggles to cope with, but she does have to deal with me having to give attention to M at home when they’re doing their homework and she’s worked hard to complete as much of hers on her own as she can.

Mr.G, G’s teacher this year, praised her for being “always cheerful, courteous, co-operative and helpful…very reliable and always willing to help with a smile”; whilst her Head teacher commented that it was an “impressive report” and her continued efforts would see her having a “very successful Year 5.”

G has been working incredibly hard over the last 5 weeks on a project for school, where she had to choose her own topic and complete independent study and research for it.  She decided to write about Canada and has spent her time reading reference books, researching on the internet and talking not only to Mike, but her cousins and grandparents too.  The piece of work she has produced is amazing and she is rightly proud of it.  She finished it by preparing a powerpoint presentation and photo montage to show in class, which was a learning experience for us both as it’s not a piece of software I’ve particularly used before.

Most importantly, despite her disagreements with M and the frequent sibling wars we have in the house, G has also been aware of M’s struggles with his new medicine and has encouraged and cheered him on every step of the way. She has given him massive support and has managed to coax him to take “just one more mouthful” when he’s found it especially difficult and my powers of persuasion are failing.  M is very lucky to have a big sister who will hold his hand and let him cuddle her teddy bear when times are rough.

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Sometimes my children are a challenge and I find myself rolling my eyes as I pull them apart for what feels like the twentieth time that day.  Sometimes I want to disappear from their world and just go back to being “me” – not head chef, not referee, not problem-solver extraordinaire.  Today, I’m happy and proud to be Mummy and to shout out loud about all their achievements.

There's nothing like team-work!

There’s nothing like team-work!

School’s out for summer!

I have that song by Alice Cooper bouncing around in my mind as I type.  I wish I could have it playing in the background as you link to this blog post, but the best I can do is point you to this You Tube clip.

We’re in the final stretch of the school year and the end is tantalisingly close.  G finishes school tomorrow and M has one last day on Monday.  The promise of 6 weeks of summer (well I can but dream) to enjoy is wonderful.  A time for us all to rest, recuperate, have some fun and hopefully see M return to better health for the start at his new school in September.

The last 2 weeks have been mixed.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Last weekend, Mike took the kids away on a “Dads and Kids” camping weekend, organised by other Dads in our church.  The weather was amazing, they had a great weekend, got to build on some fantastic friendships and I got to have a weekend off!  I wish I could say I spent the weekend doing nothing but relaxing and spoiling myself, but the reality is that I spent the weekend catching up on some long overdue household chores – ironing in this temperature is no mean feat – and trying to stay cool.

Courtesy of export-forum.com

Courtesy of export-forum.com

Unfortunately, M’s hoarse throat on Friday afternoon turned into, well, I’m not 100% certain what it turned into, but it might have been croup or a heavy cold or a chest infection or any combination of the above.  By Sunday evening, his temperature had shot up to over 39 °C and that started 3 days of a very poorly M.  He had a sore throat, high temperature, complete loss of appetite, croup-like cough, no energy to do more than sit and watch TV and felt sick every time he took his new medicine.

The problem is for M that he just has no reserves to fall back on when he becomes ill.  His body can’t cope with the illness and his EGID symptoms will typically flare too.  He has, however, headed back to school today; the lure of the Year 2 leavers’ disco after school being too great for even my poorly boy to ignore.  It is such a shame that he has missed 3 days off this week as he moves on from the school at the end of term and will miss his friends.

Courtesy of yola.com

Courtesy of yola.com

Our plans for the summer holidays are simple.  Mike and I will spend most of our weeks working, whilst G and M spend some time with my Mum.  We are off to Portugal for a week once again and I’m already beginning to plan what foods I will need to take with us.  The time I have at home will be spent playing in the garden, investigating our local area and trying out some new baking recipes that I’ve been given by friends.  Most importantly, we will be trying to encourage M’s body to recover and hopefully see a return of his appetite. The hot weather at the moment isn’t helping, but I would love to see him eating as much as he was even a fortnight ago.  We don’t have any return visits to GOSH planned until October, but I will be putting in another call to the gastro team this week to see if there’s anything else we should be doing or if they do want to see him ahead of the next appointment.

Most importantly, my plans include ice lollies…lots and lots of M-friendly ice lollies!

Courtesy of lovefood.com

Courtesy of lovefood.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.