As you may have seen, on Friday we had our YorkTest results back for Ellie which indicated she had a Yeast intolerance.
First of all, how naive was I to flippantly say “I can do Yeast”, thinking it would be a case of withdrawing bread and a few other things! I mean, she’s already Wheat, Gluten, Dairy and Soya free… surely this can’t be too bad! Wrong! It’s found in vinegar which is in bloody everything! Well, anything you might want to put on top of your dinner… and Ellie loves ketchup and salad cream! There are also a whole host of foods that aggravate the Yeast production in the gut!
So, as I do research on what I can and can’t give Ellie to eat I look up the symptoms of Yeast intolerance.
Whilst some of the obvious ones don’t particularly ring true, the Neurological symptoms were spot on!
I’ve always known that there was a strong link between the gut and the brain but couldn’t believe that with the exception of headaches – Ellie is suffering with all of those other symptoms.
For a while we had put it down to hormones with her being a near teenager and autism playing a part, but it had got so bad, I had a ‘gut feeling’ 😉 that something wasn’t right. It got so bad last night that I was in tears to a friend on the phone considering counselling or medication for Ellie.
This morning Ellie has woken up all sunshine again, but she can literally change like a light switch to a screaming, crying, self deprecating mess.
Whilst I don’t think this will be some kind of miracle cure, I’m so glad we have taken the test so we can start the process of making Ellie’s gut a little better.
Now I’d better ring for that Nutritional Therapist appointment!
It’s midday on a Sunday and I’m still sat on the sofa in my summer pjs. After having a very much needed day out drinking Gin and eating platters of meats and cheeses with my two oldest school friends, I’m now sat thinking about the stretch of the six weeks holidays in front of me!
I’m buggered whatever I do here. If I have a plan all written down, Ellie will go on and on about it, decide it will be rubbish and drive me crazy and if I don’t tell her she will go on and on about and decide we’re not doing anything and it’s going to be the worst holiday ever…driving me crazy 😜!!
She actually got upset when I told her that we wouldn’t be doing something every day! With 43 days to fill, I’m not putting myself under that sort of pressure… plus, I don’t have a money tree at the bottom of the garden! I know, there are lots of things we can do for free, and believe me, we will, but the stress of going out is sometimes too much to bear!
We’re due to go out for a walk along the river this afternoon with the dog, stopping off at a little pub and then walking back again. Hubby started to chat about the dog (who’s still new to the family and only four months old) and how much he loves her to which Ellie said accusingly “you don’t love me then”! True to form, always turning a conversation around to her! So already feeling stressed Ellie then started worrying about what we are going to talk about on our walk and whether we were going to have a good time. No matter what we say to reassure her (which I can only do for so long before I sound sarcastic) she still looks like she’s been slapped around the face with a kipper! 🐟
At this rate, who knows if we’ll go as Ellie is currently upstairs ‘calming down’.
The thing is, Ellie is now 12 years old and a lot of her peers go out and meet up with each other, have sleepovers and do things together. This doesn’t apply to Ellie.
I’ve no doubt that her peers think the world of her and support her – she’s in a lovely tutor group, but like most of our special ones, Ellie finds friendships difficult. She’s never been asked to a sleepover or around a friends house which is heartbreaking.
Thankfully Ellie really enjoys school and has a lovely little mate called Ed who is also part supported by Ellie’s LSA. To me, enjoying school is the most important thing, everything else is a bonus. However, when I think about the firm friendships I formed at secondary school, I would really love that for Ellie too… and I don’t mean a big group as she couldn’t handle that. The only plus side at the moment is that there’s no bitching and friendship break-ups – see, I’m a ‘glass half full’ kinda girl!
It is thought that high functioning autistic children have feelings of intense loneliness, even though it is thought that they like to be alone.
I find that so sad.
I know Ellie watches a lot of things on YouTube of young girls and families vlogging about having sleepovers, doing ‘friend things’ and she compares her life to theirs and must wonder why she doesn’t do those kinds of things.
I suppose that brings me back around my friendships. I am so incredibly lucky to have a wonderful group of friends and also amazing friends outside of that friendship group. They are the best form of therapy (though this blogging lark is pretty good too!) they don’t judge (true friends don’t) and their support is second to none.
I thought that when my mum passed, that I would be lost without that female bond (my mother-in-law was also lost to cancer), but this awful event in my life has made those friendships stronger. They’ve been a tower of strength to both me, hubby and the kids and I know any one of them would be there if I needed them… as I would be for them.
I just hope Ellie gets to be as lucky as I am one day.
So yesterday, we got the results back of the YorkTest (re-test) we did for Ellie last week. We first did this for Ellie some 9-10 years ago when she was two years old and was seriously regressing and we had major concerns about Autism.
Back then the test confirmed what we thought – wheat and dairy were having a huge effect on her brain function and her ability to communicate and understand (see first few blogs for more).
Anyway, the results came back as Yeast showing as a intolerance and nothing else. NOTHING ELSE! Now, I wouldn’t expect wheat or dairy to show up as Ellie doesn’t have this in her diet (maybe just now and again in an emergency like there only being a burger van to get food from!) but other than that, very little so its likely that these wouldn’t be in her system to test against. A huge relief though to find that the 11 foods that were picked up a few weeks ago didn’t show up. To be honest, I did wonder if Ellie was following the instructions the Kinesiologist gave her and whether sometimes she couldn’t be bothered to keep her arms raised. I mean, this is the girl that finds a bag of cotton wool balls heavy! 🙂
So, come Monday morning, we will be eliminating Yeast as best we can from her diet – along with still keeping her wheat and dairy free (after what we went through all those years ago, I’m terrified to fully re-introduce those at the moment – plus it would mess with any improvements from the Yeast withdrawal).
So, what are the symptoms of Yeast intolerance? If you Google this you are immediately taken to symptoms of Candida. These include: Abdominal bloating, constipation and diarrhoea. anxiety and depression, hives and psoriasis, impotence and infertility, menstrual problems, respiratory and ear problems, unexpected weight gain, feeling “bad all over”.
There is a useful video with the lovely Dr Hilary Jones on the YorkTest site that explains the symptoms of yeast intolerance and foods to avoid.
Bloating, Cramping, Diarrhoea, Constipation, Headaches and can also cause;
Acne, Eczema, Fatigue and Sugar Cravings
The symptoms that ring true with Ellie are the Anxiety and Depression (but could this be part of her Autism profile?) and also Ezcema and Sugar Cravings. I’ve always said she is addicted to sugar!
Having looked at some of the foods Ellie enjoys – crisps being the first that springs to mind, the varieties she can have all have yeast extract in apart from the Ready Salted. Ellie is constantly asking for crisps and gets very upset when I say she can’t have any more. She’s even been caught sneaking crisps up to her room (crafty kid).
Its also in all types of food such as vinegar – does this mean no tomato ketchup and salad cream? No wonder she likes it so much!
Other big culprits are Marmite (safe there!) dried fruit, Bread, Mushrooms, Gravy and Stock cubes, Fermented drinks, Beers, Wines and Ciders (safe there too!) and Ginger Beer (does anyone actually drink Ginger Beer?!).
It looks like I’m going back to checking everything again and seriously reducing/stopping the consumption of Prawn Cocktail crisps, Tomato Ketchup and Salad Cream, amongst a long list of other stuff!
I’m not going to be very popular around here!
I’ll keep you posted… but be warned, there may be many more vlogs involving distressed scenes and wine!!
So, lets get back to the story. If I’m honest, most of the summer of 2008 was a bit of a blur. We had returned from Florida, which went ok considering how poorly Ellie had been in the previous months.
There’d been doctors appointments (but that’s for another blog). We’d also decided that we wanted to try for another baby. I remember this news shocking my mum as she felt that now wasn’t the best time to be thinking about trying for another child with everything that was going on with Ellie. Why would we want to risk having another autistic child? What if Ellie didn’t get better? I knew that’s what she was thinking.
Ellie had been following the diet for six months now and we felt we were getting a handle on the situation (how naive!) and considering our past complications with not conceiving in a previous life (that’s a whole other story!) we figured we may not be as lucky to get caught again anyway. Plus, we couldn’t see ourselves just having the one child – I certainly didn’t feel like I was done with the whole babies and pregnancy thing.
So, with a possible pregnancy on the cards, we decided to book a little getaway for ourselves to New York (ok, not that little) in November – at the earliest, I could be in the early stages of pregnancy – and if we didn’t do it now, we might not get around to it. Mum and Dad kindly agreed to have Ellie while we were away.
So, lets fast forward to late November. I was 12 weeks pregnant (wooo hooo!) and we were going to New York in two days but for the past week Ellie really hasn’t been very good. A lot more moany and any little instruction was met with confusion and meltdowns. Simple things like ‘sit down’ and ‘put your coat on’ was lost on her. It was clear to see that she was starting to regress again.
So, in a panic we made a quick dash to the Kinesiology lady that did the weird stuff with little bottles. Once again, I held Ellie’s hand whilst she sat on my mum’s lap and I raised my arm up (and sometimes not) each time the lady put a little bottle of something on my cheek. I didn’t know what was being tested and neither did the Kinesiologist but it turned out that along with the usual suspects, Rice was now a bad guy!
WHAT!! Something else we now had to eliminate! When we thought about it, Rice was in a lot of what Ellie was eating as a substitute to the wheat and gluten so she had now become intolerant to it. That seemed to happen pretty quickly with Soya earlier in the year which we were warned about from the York Test Nutritionists on one of our telephone appointments.
This was not great timing. We were due to go to New York in less than two days, we now needed to sort through what Ellie could eat while we were away. Thankfully, Mum was ‘on it’ even quicker than I was. She had everything sorted out ready for when we went and assured me that Ellie would be fine.
So we went to New York and had an amazing time – apart from feeling absolutely shattered from walking for 10 hours a day and growing a baby… and not being able to enjoy a beer in a New York bar 😦 We rang home often to check on Ellie and was assured that everything was fine. Apart from it wasn’t. Mum and Dad had taken Ellie to visit my brother and his family for the weekend and whilst she was there she was extremely upset, and unsettled… they just didn’t want to tell us while we were away.
By the time we got home the following Wednesday Ellie was just coming out of this withdrawal period and was starting to follow things a little better. Mum knew that had we known how bad she was on the Saturday before we flew, we may not have gone. We couldn’t believe the effect food had on her. Once again, Ellie had become intolerant to something that made her regress.
Thankfully, over the months, we managed to reintroduce Rice back into the diet. We now knew that too much of anything could cause Ellie to become intolerant.
For this last year or so (2016-2017), we have become a little more relaxed with the diet. Back in the day we were so anal – making sure there could be no contamination of wheat or dairy. However for a while now, we’ve allowed the odd bit of chocolate or a burger if we’ve been out and stuck for food options and some cheese on her gluten free pizza on ‘Pizza Friday’!
I have noticed recently though, that some of Ellie’s behaviours have become more extreme. She is getting easily confused, not understanding what I am saying, extreme mood swings and slurred speech. Of course, this could all be the process of becoming a teenager (god help us!) but when you have a feeling in your gut (excuse the pun!) you need to act on it. We’ve already had a Kinesiology test which is great if you want an immediate answer, but it revealed 11 different foods! We needed something more conclusive (ie; whether something was severe or borderline) – so yesterday, YorkTest received a small blood sample to get Ellie re-tested for food intolerance … so now we wait!
Back in May, we surprised the kids with tickets to Little Mix as part of their birthday present (they’re both May babies!). They were both very excited and for the last few months I’ve heard nothing but how excited they (Ellie) was for the concert.
Fast forward to the night before (Thursday). Ellie had a huge meltdown about how she was going to look rubbish, how she would “look like the donkey” (what!??), how she was going to have her hair – up/down/curly – and which ever way I suggested, it was still going to look rubbish!
Then there was more…. “Are you going to dance?” (Yes Ellie) “I don’t think you will”. “Can I dance?”… “I’m a rubbish singer”… “Shall I sing?”… “My hair is going to look rubbish”…… I zoned out!
Weirdly she said nothing about the crowds and waiting… though I know this was the underlying factor to the anxiety. There was constant shouting at me of “I’m excited for Little Mix!”. I had to resist the urge to shout ‘Tell your face then’ and just replied “Ok babe” but that just got a shout back “Are you excited?” Well, right in that moment, no I wasn’t excited. I really didn’t want to go at all.
Forty-five minutes later and Ellie had finally gone up to bed – crying and mumbling more of the same… and I’m sat with a vodka – on a school night – with work in the morning (I’m hardcore like that 😉 !). A WhatsApp moan to my best girls and a waffle on my Facebook page and I felt a little better… plus the second vodka was kicking in! (don’t judge).
Next morning… what do you think were the first words I heard? Yep, you guessed it… “I’m really excited for Little Mix” which would’ve been fine, except it was a moany, shouty noise I heard and not an excitable 12 year old! Oh god! Here we go again! There was an hour of more of the same – all whilst trying to get us out for the school run and me off to work. Well, I lasted 45 minutes before I blew my top – which actually could be some kind of a record! Hubby stayed out of Ellie’s way so as not to add to the anxiety levels! It’s really not helpful for two parents to lose it!
Later that morning, I hear that the traffic for the the previous night’s gig was horrendous. Over an hour just to get into the car park, and hours to get out again. I was really not wanting to go now. Ellie doesn’t do waiting at the best of times, so this would definitely be meltdown territory.
After much consideration, we came up with the following plan. Hubby offered to stay at home as he’s not great in traffic either (stressssss head!) and that would take the pressure off of me to try and keep both him and Ellie calm. I think the thought of a quiet night, hot tub, beer and the TV to himself may have also played a part! What a trooper! 🙂
We were also taking George’s little friend from school and her mum with us, so that would hopefully be a good distraction for Ellie. Well, the plan worked! Despite it taking well over an hour to move the last six miles, the singing in the back of the car and eating of snacks was a complete distraction and we got there meltdown free.
We were lucky at the gate as well. We arrived just half an hour before the main act – which meant the line for bag search was empty and despite a little wobble as we entered the site, Ellie was doing really well.
The concert was held outside at Powderham Castle in Devon so there were no feelings of claustrophobia and we stood quite near the back (which was handy for later as we got out first). Ellie didn’t even need her ear defenders (George wore them) and she was now genuinely excited to see her favourite group.
What happened next made all that pain and anxiety (mine as well as Ellie’s) worth it. As the girls came on, Ellie held her hand to her mouth and started to cry. She was so happy to see her girls there on stage! Granted, they were small dots from where we were, but seeing them on the big screen and seeing Ellie so ecstatic was amazing. She must have cried with joy at least half a dozen times during the concert!
We danced, we sang, we waved and even ‘slut dropped’ a few times! (did I just say slut dropped?!).
As I said earlier, being near the back had its advantages. We left just before the encore (as did a lot of others) and watched the last song as we walked to the car park. I then made a sprint for the car and picked up the guys on the way out! We were out of the car park in 5 minutes! Genius!*
Apart from a scary detour up a single car sized country lane which seemed to go up into a forest and me trying to manoeuvre us past several cars coming the other way (Ellie really not keen on that – & nor was I tbh!) the evening was a complete success and I’m so glad we decided to go. Both Ellie and her brother George were still buzzing when they got up this morning.
So, I might just do it again!
*I heard later that night that two friends were stuck in the car park for over two hours! So whilst they were still trying to get out, I’d got the kids up to bed and was now sat… having a vodka! Right decision made! 🙂
So, the end of the school year is nearly here! To be honest, I don’t know how I feel about the holidays. I love the fact that there’s no routine, no lunches to prepare, no uniforms to get ready and no PE kits to hunt down! On the other hand, there is the anxiety of what we are doing for the six week stretch (and that’s just me!). If I give out a programme of activities to Ellie, I won’t hear the end of it as each situation is super analysed and questions (the same ones) asked over and over again. If I keep information under wraps, there are meltdowns that we aren’t doing anything this summer and its going to be rubbish! We actually had one of these on Sunday with two whole weeks to go! Joy!
Anyway, I digress! I want to talk about the end of term and events that our AS children find particularly difficult – Sports Days and Exam Results.
Sports Days have always been difficult – especially in the early years. The cheering, the waiting around, the heat (if we happened to have a hot day) the co-ordination required to do the races and following multiple instructions.
I remember the first sports day Ellie had with the teaching assistant running along with her. We felt a huge sense of pride, but also saddened that she wasn’t able to do it on her own like the others. She stood out as being different. What I do know, is that everyone loved her. All the parents were cheering her on and were genuinely as pleased as we were that she was competing.
Something then happened at the Year 1 Sports Day. Ellie managed to do one race, along with the assistant running with her, but everyone cheering her name and encouraging her to finish, it all got too much. Ellie sat back down in tears and didn’t want to take part in any more races. My heart went out to her. Her peers were always so caring and really looked after her – they made her feel like it wasn’t a big deal – I loved them for that.
The following year, Sports Day was rained off … twice! Aaaah, those rainy memories of 2012!
So, onto Year 3 and a major achievement! Sports Day was taking place at the local park with all of the Key Stage 2 children – some 240 children plus parents. Once again, we were apprehensive about whether Ellie would want to take part. My heart was thudding as she stood with her team mates ready for her race. I can’t tell you the pride I felt as she ran down the straight towards the finishing line. As I looked around, hubby, Mum and my Dad were all tearing up as well. Over the other side of the track, I could see Ellie’s teaching assistant wiping tears from under her sunglasses. Yes – Ellie had done Sports Day all by herself.
And by the time Ellie did her final Sports Day last summer she was nailing it!
Exams and results are also a big part of the summer term.
We were very fortunate with the SATs that Ellie took last summer, as school didn’t pile pressure on the children and we certainly didn’t with Ellie. Surprisingly, Ellie’s assistant reported that she had her best week ever at school during SATs week. All the routine and structure was a dream for Ellie. In the end, we didn’t even find out the results of the SATs – we knew that Ellie had made progress during the year which for her was the goal.
So now fast forward a year. This week we had a panic attack about this year’s exam results? Where did we lose the ‘being proud of the progress’ attitude.
Its not that we would ever compare Ellie to any of her peers, but it was just a shock to see how she did in a paper that the whole of the year took. Admittedly, it was Maths, which has never been a favourite ( Ellie used to be scared of Maths) but to see that she only got a handful of questions correct out of a score of 60 really got us worried.
The story was similar in other subjects. All I could think was ‘what are we going to do?’. I was imagining Ellie sat in her classes, not benefiting from the curriculum in any way. I couldn’t understand why they would test her on a paper that she hadn’t even been learning (Ellie does Maths at a lower level away from class).
Thankfully, Ellie is fortunate once again, to have a super teaching assistant who kindly asked the Head of Year to give me a call. Talking things over with her made such a difference. She explained the processes and the reasons to why they tested everyone the same and that for Ellie, she has made great progress during this year… not only academically, but more so socially, gaining confidence and independence in lots of aspects of school life. She has her own targets to strive towards and school were very pleased with her progress.
And that’s were it’s at… progress. We don’t need to worry about what everyone else is doing – as long as our child is moving forward, be it big or small, and most importantly, if she is happy, its all good.
So, I’m now on countdown to the start of the summer holidays! Best re-stock that wine fridge! 🙂