Tag Archives: Dyspraxia

Our birthday boy

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

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

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

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

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

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

A Pizza Express birthday

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The first day of December heralds the start of the busy season for most, but an especially hectic time in our household. As well as the much-awaited day itself with all the associated celebrations at school, work, choir and church, we also have to fit in a 10^th birthday and a wedding anniversary. This weekend we got the ball rolling in fine fashion with an early birthday celebration for G.

Whilst G is most definitely a December baby, this year other commitments near her birthday led to my decision to throw her party early and sneak it in at the end of November instead. The first discussion was about the format her party was going to take. G was keen to combine cooking or baking with a sleep-over. I was less keen. The prospect of organising a group of near 10 year-olds (and two 7 year-old boys) to prepare, cook and possibly decorate a selection of M-friendly foods lacked appeal. Add in M’s inability to settle and sleep at the moment and I could see that it was more likely that full-scale battle would break out, rather than the joyous birthday celebrations G had in mind.

Thanks to some wise words from Canadian friend F, I found the perfect solution – a pizza-making party at Pizza Express. Now I appreciate that throwing a pizza party for a child with wheat- and dairy-intolerances and her multiple food-allergy suffering younger brother sounds somewhat off the wall, but thanks to the gluten-free menu introduced by Pizza Express earlier this year, we knew it was a viable option. We discussed our requirements with our local restaurant and were reassured that both children could participate fully and work around their dietary restrictions.

The date was duly booked, invites sent, travel arrangements made and finally the day dawned. Following our prompt arrival at the restaurant, each child was given an apron and hat to don before their starters of garlic dough balls and a side salad were served. Thanks to the information provided by Pizza Express, I was fully equipped for all eventualities and the chef was able to lightly toast 4 slices of M-friendly bread, which was served with garlic butter that I had prepared at home.

Next the task of making the pizzas themselves. G, M and their friends were given a ball of pizza dough each and were then instructed in the art of rolling, pressing out and filling the pizza pans. The children had varying success with their pizza bases, but eventually, after a couple of false starts, everyone had a base to be proud of. They were then given a selection of toppings to add before their pizzas were baked in the ovens. G and M were able to take full part in this, preparing pizzas for Mike and me to enjoy.

Stretching and fitting the dough to the pan

Adding the GF tomato sauce to the base

Once these pizzas were ready to be cooked, G and M were then given the opportunity to make their own lunch. Our party host was fantastic and explained just how Pizza Express make sure that their GF options are kept safe from the risk of cross-contamination in their kitchens. The GF pizza bases are pre-made and kept in separate storage as is the GF tomato sauce for the base and they use different pizza pans to cook the GF pizzas, which are easily distinguished from the normal ones. I had brought our own supplies of grated goats’ cheese for G and chunks of Violife vegan cheese for M, which is both dairy- and soya-free.

G’s with goats’ cheese and ham and M’s with black olives and Violife cheese

We finished the meal with a small portion of ice-cream with various toppings they could add at their discretion. Once again I had been able to bring with me a tub of Booja-booja chocolate ice-cream for G and M to enjoy and was thrilled to discover that the Pizza Express toffee sauce was safe for them too as the party host had made the effort to check the detailed allergy listing for all their products and could reassure me that it was safe.

A game of “Pin the moustache on Paulo” entertained them whilst the pizzas were cooking

All the children had a wonderful time and we were hugely impressed by the attention to detail that PIzza Express makes to ensure that their allergy-friendly options remain safe, even down to serving G and M’s pizza on separate platters to once again ensure no cross-contamination occurred. It was a real treat to be able to offer a “normal” birthday experience to G and for them both to enjoy the birthday celebrations with their friends.

Dyspraxia support

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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

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

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

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

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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

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?

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

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

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

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

My child with Super powers

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

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

Courtesy of kotaku.com

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

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

Courtesy of http://www.evolllution.com

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

Lake Huron, Canada

Proud Mummy moments

Where there’s hope

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“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.

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.

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.

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.

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

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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.

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.

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.

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.

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!

Exhausted!

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It’s been a long, exhausting, but fantastic weekend. We’ve got so much more from this weekend than we had expected or even hoped we might.

Saturday was a busy day at the Allergy and Free from Show and I really wish we’d had the 2 day visit we’d originally planned. Just to give you an idea, the photo below is a small part of the hoard of M-friendly goodies we came back with:

We managed to pick up some of our family favourites at “show” prices, which meant that lots of the products were at half price or less, but also found some new things too, which were either new to the market by some familiar names or simply new products to us. Amongst the new treats we discovered were

Bfree Gluten and wheat free tortilla wraps – perfect for M and G’s lunchboxes
Gluten, wheat and egg free spaghetti – the manufacturer assures me it won’t go sticky during cooking like so many other brands do. This is one that we’ll have to try and see
MozzaRisella – a mozzarella-type cheese made from rice and containing no dairy or soya
KoKo Strawberry flavoured coconut milk – not just a new flavour, but now also available as a pack of 3 250ml cartons, perfect for a treat on a day trip

We found that all the stall holders were knowledgeable, informed and friendly. Nothing was too much trouble for them and they all took their time to talk with not only Mike and me, but M and G also. We were also lucky enough to meet the wonderful folks of both Fabed and Parentsown and discovered them to be even more delightful and helpful than they are on their respective web forums. Finally, the children were collared by well-known TV weather girl, Sian Lloyd who had her very own weather map on hand to show the pollen count and problems experienced by hayfever sufferers in the UK. She spent a long time teaching both G and M how to present the weather, had photos taken with them and chatted to us about M’s condition and why we were visiting the show.

My round-up of the show has to be M’s quote on whether he enjoyed our visit:

“It’s the best show we’ve ever been to, Mummy. Can we come again?”

Sunday was another great day, although the sunshine we had been hoping for didn’t materialise and the morning was overcast and grey. We made our way across London and eventually reached Battersea Park to join around 3,996 other people in the 5K RBC Race for the Kids raising money for Great Ormond Street Hospital. It may have been a less than sun-filled day, but the number of people taking part was amazing to see and I can’t wait to hear the final figure for the amount of money raised. We didn’t rush to get to the start early after a late night at Matilda on Saturday – and before I forget, I highly recommend a visit to the Cambridge Theatre to see this awesome show – but we felt the camaraderie and excitement of the walk nevertheless. As requested by M and G, we had taken along the scooters and they happily led our way as Mike and I followed, alternating between a walk and a gentle jog.

We had some highs and lows along the way with M as expected as he took the occasional tumble from his scooter (we’re still working on the balance issue as he struggles because of the dyspraxia) and minor tantrums as it appeared that G might beat him across the finish line. However, finish it we did and we collected our medals and goodie bags, completed a quick tour of the entertainment provided for those who took part and even fitted in a play at the fantastic park in Battersea, before heading back across London for lunch and our train back home.

I’m still waiting for a final couple of donations to be made before I can update you on our personal family fundraising total, but, for the interim, here’s a photo of M in his race t-shirt, RBC lion and medal.

Another day..

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…and another challenge.

Today has been a different kind of challenge for us. We have long been aware that as well as his dietary difficulties, M has also struggled in the classroom. He’s a bright lad, articulate and with an imagination that many would envy, but he has struggled to learn to read and write. He loves to be creative, to perform and can sometimes answer mental arithmetic faster than G, but he struggles to spell and put his creativity down on paper as the written word.

Having finally found the diagnosis for his health issues, Mike and I decided we needed to seek an answer to the academic ones. M completed 12 weeks of fairly intensive speech therapy at Easter which enabled him to say his “s” sounds clearly and we have seen his confidence grow. Now it’s time to see if we can give him a pair of metaphorical wings and watch him soar.

So, this morning, instead of heading off to school and work with our packed lunches in tow, M and I made our trek to the Dyslexia Centre for an assessment. M met with a lovely Educational Psychologist for just over 2 hours, where she put him through his paces. The answer came back with a resounding “yes”; they could identify the problem and there is something we can do to help. M has dyspraxia and possibly also visual dyslexia. This is going to be a steep learning curve for us, but in a nutshell, he is going to struggle with processing the messages his brain sends as they are not properly or fully transmitted.

We came away with 2 coloured acetates, one yellow and the other “celery” (I kid you not), which will help him track lines when reading text or numbers – this is the visual dyslexia part. We now need to research the options for an occupational therapist to help with the dyspraxia, an optician who specialises in the diagnosis of visual dyslexia and the processes we can put in place and can ask school to do to help him. Whilst this seems, and feels, like yet another set of labels for M, I am relieved to have an answer to his academic struggles and a resource to be able to find some fixes for it.

On the dietary front, both Mike and I have managed okay and, as I type this blog, Mike is putting the final touches to tonight’s dinner. My biggest struggle today has been hunger pangs, I have found that I don’t feel as full on M’s diet as I usually do, but I don’t think that’s necessarily a bad thing. Mike’s is the continued avoidance of the cakes and cookies at work, which is definitely not a bad thing. The hardest thing for tonight’s dinner? No mayonnaise, which I love to eat with Corn fritters and sausages normally.

	M	Me	Mike
Breakfast	A handful of raisins	Sliced apple	Bowl of: Cornflakes Raisins Rice milk
Lunch	Crispbreads x2 Ham Cucumber (3 slices) Fruit smoothie Crisps (Plain) Bear’s Fruit yo-yo	Crispbreads x4 Ham Salt & Vinegar Mini rice-cakes	Leftover cooked rice and Chicken Korma Apple
Dinner	2 Tesco Free-from sausages 3/4 Corn fritter (home-made using my pancake recipe) Carrot (1 stick) Cucumber (3 slices)	2 Tesco Free-from sausages Tomato Mushrooms Asparagus Corn Fritters with added chilli flakes	2 Tesco Free-from sausages Tomato Mushrooms Asparagus Corn Fritters with added chilli flakes
Snacks	Nkd Cocoa Mint date bar Fruit Factory Fruit stars Doves Farm Fig and Quinoa cookies (2) Banana	Peppermint tea	Banana Apple

7 years to diagnosis

Searching for an answer

Tag Archives: Dyspraxia

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Exhausted!

Another day..