Life hurdles – by Jenny Foster


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When Ewan was 6 he was diagnosed with a learning difficulty you will all be familiar with called dyslexia. In general it affects his ability to read and write and has a knock-on effect with all of his schooling.

The dyslexia in itself is a major life hurdle for Ewan and puts him in difficult situations everyday but I never expected it to have a detrimental effect on his health. That was until he was diagnosed with Type1 diabetes.
You might be asking yourself what the Dyslexia has got to do with the Diabetes and vice versa. Surely they are two separate issues, dealt with in completely different ways? One with extra support during lessons and the other with medication. Well that was my way of thinking too until just recently.

Last Thursday Ewan had a blood glucose reading of 24.2. It was out-of-the-blue, in the middle of the night. We managed it as we always do but he awoke in the morning with a similar high. Having just started a new year group and class at school I decided to keep him at home until I got things settled and agreed with his teacher to bring him in at morning break. Not being able to pinpoint why he had this sudden high was a little frustrating but everything soon became all too clear.

When it was time to get dressed and leave for school I found Ewan in a heap on the floor of his room in floods of tears. He was scared and frustrated and the tears just kept on coming. It transpired his next lesson was English and he was going to be sitting a reading assessment, for someone with Dyslexia this presented him with some major hurdles to jump.

What followed was the realisation that his anxiety about the assessment could well be the cause of the high blood readings and then two very long hours of calming him down, getting him to school, meeting with the special educational needs co-ordinator and arranging some support for him to get him through the assessment.

I was left feeling exhausted and thinking about all of this upheaval for a minor, in-class reading assessment that has no bearing on his future – and he is only 10?! You should by now see where I’m going with this…

In 6 months time Ewan will be sitting his Year 6 SATS and there’ll be various assessments over the next few years before he starts in 4 years time to study for his EBaccs!! (Come back GCSE’s all is forgiven!!). Managing his anxiety and stress, as well as getting the right level of support for his dyslexia has suddenly become crucial for his future health.

The change to EBacc’s and the return to an end-of-year exam instead of 2 years of assessments and course work could not be worse for Ewan. The format relies heavily on him having a ‘good day’. Even without dyslexia and diabetes to consider, this is a tall order!

While I will never doubt his enthusiasm or determination to succeed, the vicious cycle of him worrying about his capabilities to complete the exam, then the stress and anxiety increasing his blood glucose levels, in turn making him hyper and potentially very unwell makes me wonder whether having a good day, at just the right moment will ever happen for him?

Only the future will tell.

I would love to hear from other parents of children with Type 1 and other people with Type 1, who have additional needs to understand how they have learned to cope with one in order to help the other. Leave your comments below.

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This issue does not just affect children like your son. Standardised testing affects ALL children detrimentally. The documented evidence is that Standardised testing lowers overall educational attainment. Every country that adopts standardised testing sees their PISA scores fall. Examples are the US, Norway, Australia and now the UK. And why do we continue on this road to ruin? Because politicians with absolutely no background in education are allowed to make decisions based on personal opinion.

If you want to make a difference then there has to be a campaign to stop standardised testing, get rid of the word “excellence” and replace it with “equality” and replace league tables with a set of standards that all schools must meet in terms of professionalisation of teaching.

Thanks for sharing this inspiring true to life story of your son. Although it is hurting that every we get to see our son suffering from diabetes but I am sure that God has a purpose. Let’s just pray for Ewan’s future ahead.

Dear Jenny,

My daughter was diagnosed dyslexic in primary 5 and Type 1 diabetic in primary 7, she dealt with all this very well. As before she was diagnosed officially with dyslexia she “felt stupid” and when the school finally admitted she was dyslexic she said ” at least now I know I’m not stupid!” The school wasnt keen to label her but I feel once she knew it wasnt her fault and she wasnt stupid she was much happier.
Emma accepted being diabetic very well for a start considering she was 11 and about to go to high school. She was injecting herself within a week of being diagnosed and went to Paris with the primary school 4 weeks later(I was a bag of nerves). She then went on several trips at high school and has sat her standard grades and passed all 7! She is now in the process of doing her highers and looking into going to University. I have had to fight for support at school for her dyslexia and the school really doesnt seem to understand the needs of diabetics, even though there are several kids with it.
Since she turned 16 she has refused to test her blood as she hates doing it and her finger tips became very sore and sensitive. Six months ago she turned 17 and was refused her provisional driving licence as the DVLA said ” she had poor understanding of her diabetes!!!!!” after they had contacted her doctor. She has learned a hard lesson and now tests her blood 3-4 times a day and has been told she can re-apply for her licence.
Dyslexia and diabetes are hard work for us all! Keep stong and keep fighting for your son to get all the help he needs and deserves. If we cant stand up and demand help from health professionals and education, no one will. The more noise you make the more you and your son will be heard. This is what I have found anyway!
Good luck
Allison

Dear Jenny

I am now filling a complaint for discrimination against First CapitaL Connection.

Last week Daren was on his way to London when he was catched on First Class trying to recover from an hypo…..they fined him despite he was drinking lucozade and feeling very unwell .They train was full and he couldn’t find a place in standard class.

As you might now Diabetics are now protected by the Equality Act 2010 and there are a big number of decisions from the ECJ on this regard .

Since I am a Lawyer (although qualified in Spain) I have to tray to defend the rights of many Diabetics as Daren.

I have now trying to make Diabetes Uk the charity of the company I work for.We donate money every week for a charity and I really hope this week will be Diabetes Uk.

Un fuerte abrazo

Hello Jenny. I have not had experience with Diabetes – extreme examination related stress is something that my family is somewhat of an expert in (and I do mean extreme, not just the usual occasional tears etc). Aside from your complaint against the EBacc system (I think you may be dramatically underestimating the stress levels on coursework that isn’t going well), I find this a very interesting piece.

I think when the time comes, the most important thing for your Ewan is likely to be preparation. There is no way to remove his worries over the effects of either his Diabetes or Dyslexia, so to minimise his stress they need to be Ewan’s only concern – he must walk into every exam confident that his preparation has been as complete as physically possible. Additionally, I would recommend starting relaxation rituals e.g. regular yoga or other home therapies within the next year or two, so that in the tough years to come Ewan always feels like he has a ‘go-to’ solo activity to help him cope with stress.

Hope this is of some help, although I’m sure it’s nothing you weren’t already thinking.

HI all,

More lovely comments and great stories on the back of my blog last week…..

Dawn – your story is inspirational for me to read and fills me with huge amounts of hope for Ewans future, thank you for sharing!

and Sue – well you have me tears!!!! You have been a constant support for me since Ewans diagnosis – you are always there when we need you and you give me a great excuse to stop lifting weights when we bump into each other at the gym and get side-tracked with Diabetes talk!!! It’s so lovely to hear you share yours and Robbies story, he is a credit to you and the rest of your family!

Jen x

Hi Jenny, I know we only live round the corner, but with children nearly 8 years apart in age we are at different stages if life. Robbie was diagnosed with type 1 diabetes at the age of 3, in shock and wondering what life would bring i always believed one thing – i would never let it make him ‘different’.

Robbie went through first school with snacks that every other child wanted to have and he didn’t, he moved to middle school and took his first residential trip in year 5 with 2 staff from Valley Gardens who reassured me completely they would look after him, i had to let him go, and he was allowed to phone me every day with his sugar levels – he had a fab time!

By Year 7 Robbie was the first child in North Tyneside with an Insulin Pump (which i had to fight for) and from then on life became so less complicated for him. Freedom to eat what he wanted, when he wanted, no force-fed snacks, less night-time hypos and no more injections!

Year 8 he enjoyed a skiing trip to France with the school. I didn’t sleep for a week! But he wore a ‘guardian’ which kept 24hr track of his sugars and he had the most fantastic week with his friends, skiing, staying up late, eating at different times while i learnt to let go a little….. I’m sure like all parents of a child with diabetes, we worry and continue to strive for near perfect blood sugars.

Then High School and teenage years arrive, testosterone running wild and alcohol on the scene …. Still, although sensible, he never wants to miss out and I never want to stop him. …. So, he has a couple of cans (tests more), goes to Evolution, stays out late and falls in love …. (almost all in one night!!)

(PS: the contraception talk remains the same!)

What I hope you see in my story is that Robbie never wanted to be any different, so i always tried. We managed, and I have tried to let go a little at a time. In 6 months time Robbie will be 18 and like any parent, I have to hope I have done my best to guide him in the right direction. He is still with his girlfriend from 2 years ago and still plays rugby every week.

Next year he plans to go to university (after he has a lads holiday in Greece!) I think it is time for me to let go, although as you are probably all familiar with, I still wake with “what’s your blood sugar?” , “have you got your blood test?”, “did you change your lancet?”,” have you got lucozade?” – a constant reminder, but don’t ever let it stop your child doing whatever he or she wants to do.

I have hopes for Rob that many parents must have for their children …. That he does more than me, travels the world, fulfils his dreams and never lets anything, including diabetes, stop him.

God bless and good luck son. love you always xx

Dear Jenny

I would like to share mi history with you.
Sosrry if my english is no great but Spanish is my first language.
My boyfriend who with I have been sharing my life now for a few years is diabetic and dislexic.

He was diagnosed with diabetes 1 at the age of 6 and dilsexic a bit later.Now he is 43.

I know very well from his mum that he had great support from his family , but I know that for the rest of the world can be diffcult to understand sometimes.

Daren studied engineering and he works in the financial industry now.He is not the quicker employee for sure but he tries his best and I know that he works very hard.Sometimes he is a biot down but we are always ther to help him.

I have learnt how to deal with diabetes and how to understand his feelings when he doesn’t feel very well.

Daren loves sports and specially cycling and he has a very healthy style of life.I am there to cook the best and healthier dishes.

I know life is no easy for him and sometimes he asks himeself why he suffers from this…life is this unfotunately and we have to go through it and always smile.

I think maybe all this makes of him a nice, down to earth and honest person.I am a really lucky woman and I hope God give me the strenght to care him of him for always.

Thanks for sharing you story and always think that with the love and support of your loved ones everything is possible.Ewan will do whatever he wants to do, I am sure of that.

Saludos

Maria

Hi Jenny, I am type 1 diabetic and dyslexic too (as well as having chronic back pain, and a needle phobia to deal with). I have just finished my Masters in Marine Biology, and I am currently working with Great White sharks, and applying for a Phd. It has been hard learning how academic work has a knock on effect with my diabetes, if I have a really intense day when I am concentrating hard I risk going hypo, and if I get stressed about work or exams my sugars would go high. Its really hard learning to balance this new twist in diabetes with all the work needed to do well in school. For me teachers etc did not understand how the work and stress could have an effect on my sugar levels so I have to do it on my own (and the support from my family). Hopefully you will have a more understanding school. Being dyslexic you have to work twice as hard at school to get the same results as anyone else but it is worth it when you get a good grade back at the end.

Hi Guys,

Thanks for all the messages and comments, it’s great to get it all off your chest sometimes isn’t it??!!

Diane – Ewan is also Coeliac so we know exactly where you are coming from! it’s heartbreaking to see them having to cope with all that the world has thrown at them… I wish I could take the diabetes and give his dad the coeliacs then he would just have the dyslexia to deal with!!!

Alison – I wish you, your son and your husband all the luck in the world as I know sometimes a little bit of good luck is all we need!!!

Kate – I think your mum must be a saint!! although she sounds very lucky to have you helping her support your brother – best wishes and thanks for sharing your story.

Keri – Wow! Leah sounds like a little trouper!! Ewan wears an insulin pump now so injection sites have been replaced with finding good cannula sites, so being limited as you are, as to where those sites can be must be really stressful. Thanks for sharing your story and for reading mine!

Best Wishes
Jenny & Ewan X

Hiya,i have just read your story and i can really sympathise with you.My 8year old daughter Leah was diagnosed with Type 1 diabetes in July 2011 and also has other additional needs to deal with.
Leah was born with a birthmark which covers a large part of her body (giant bathing trunk nevus) and also has many other smaller birthmarks which are all over the rest of her body…basically there is not a part of her that hasn’t got one on.
As Leah is starting to get older is she is becoming more aware of how different she looks to the other children at school and is starting to question “why me”?. This covers both “why do i have all these moles”? and “why did i have to get diabetes”?.
It is heartbreaking to see your child at such a young age have to put up with so much but i do remind myself that there are others far worse off than us.
Because of Leah’s birthmark we are limited to where we can inject her insulin,the areas where the birthmark covers have very little fat under the skin so the only place that’s comfortable for her is her arms.She does self inject at school but is not very keen on doing it but we obviously don’t have any other choice. It does worry me as she gets older and becomes more independent that she will skip some injections,but we have yet to cross that bridge.
We do cope with all this and Leah has been absolutely brilliant but that’s not to say we don’t have our ups and downs.Sometimes it really gets on top of her and she refuses to check her blood saying she would rather die,as any parent knows that is something you never want to hear your child say.Because of this we have made an appointment to see someone from our local Child Mental Health Services just to see if they can provide some help and support for Leah.
It is comforting to know we are not alone in this and i wish you and Ewan well.

Keri.xxx

Hello, it’s touching to hear your story as my older brother (recently turning 20) has been coping with type 1 diabetes as well as suffering with severe autism. This makes things incredibly difficult in everyday life. Myself (recently turned 18), my older sister (recently turned 22) and my Mum all take part in being a full time carer for him as he’s not able to do anything for himself. Because of his autism, it’s impossible for him to accept the word ‘no’, and he loves his chocolate! Which of course means that his blood sugar goes high. If we was to tell him no, he wouldn’t listen and would probably end up having a big temper tantrum instead! So its just easier to let him have the chocolate. and on top of all of that im also a type 1 diabetic and have been since the age of 6, i’ve suffered very badly with Diabetic Keto Acidosis (DKA) from around the ages 12-15. My mum hasn’t had it easy bless her! :/

Hi my son James is 21 he has diabetic since he was 13, he also has learning difficulties like jenny,s son, he also was amitted to hospital 4 time with his ketones because his sugar levels sometimes gets too high, he does have hypos but not very oftern of any one else has the same thing look after your self becsuse its hard when you have to look after two people in your family who have diabetic type one , my husband is also a diabetic, he was 13 also when it happened,

Hi Jenny,
Thanks for sharing your experiences with Duk. My son was diagnosed with type 1 diabetes at age 4. He was diagnosed last April with coeliac disease also. What Ive found with CD is that if he has been “glutened” he can have severe stomach cramps and diarrohea. This leaves him drained, his blood sugars go haywire for a few days and all together leaves me feeling exhausted too. Whenever he gets invited to a birthday party, I make gluten free cupcakes for him to take, and at age 9, he’s happy to do this. But he does get so upset when he feels so different to everyone and this upsets him.

I can’t imagine how hard it is for your son, all through school he’ll need first class support to help his confidence grow, and I hope he gets this.
My son’s school are still making mistakes with things, but I try to educate them each day, i really hope his teacher doesn’t irganise anymore class baking events this year or I might go bush! Lol

We are in Scotland. I also have a daughter who is older, but with no medical conditions. She can be a great support