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! 🙂
So, back to the story and it’s April 2008 and we have a trip to Orlando to go on. Obviously, when we booked it some 11 months earlier, we didn’t envisage that we would have to navigate a restrictive diet along with the regressive behaviour of our two year old daughter. It was a real worry thinking how Ellie was going to manage.
I remember doing a lot of planning! Literally, organising food for every eventuality. Hand luggage was full of treats, special sandwiches, plain crisps etc to keep Ellie busy on the flight. We’d gone up to the airport the same day so didn’t have to worry about overnight food before the flight.
Before we went, we did some research looking for specialist stores that sold ‘free from’ food and located a Publix not too far from our appartment, where we stocked up on rice, GF pasta, crisps (potato chips!) and bread.
I don’t remember having any trouble with the flight, Ellie was still a lot quieter than she was before the virus and we kept her busy with comics, tv and food!
The shops in America were a dream come true in comparison to the poor selection we’d been used to at home. I remember it taking so long to find all the products at the store because they didn’t have a ‘Free From’ section like here in the UK but instead stocked it with their counterpart ‘normal’ products – so going around the huge store took forever!
Everyday, we would load up with plenty of food for Ellie – either a GF pasta and tuna dish or a rice, ham and peas dish in our clever little tuberware ‘keep it hot’ lunch pot. If Ellie got hungry in the parks, she would have ice lollies and she even tucked into those huge Turkey legs! Huge packs of ‘potato chips’ were a godsend as well!
There was definitely sensory overload going on in the parks – so much was happening and so many sights and sounds, so there was a lot of moaning and crying from Ellie when she wasn’t coping. Thankfully, we had my Mum and Dad with us to take the heat off a little.
Having to wait more than 10 minutes for a ride was a big issue. Thankfully, we went at a quiet time of year so it wasn’t too bad and we managed to buy a Fast Pass ticket in the Universal parks to get through the queues quicker. On visits since 2008 (and having a diagnosis) we have had a letter from the doctor which has meant we have been able to get Assistance Passes for all the parks – but more about them in future blogs!
Even back in 2008, the parks were very helpful in terms of food for allergies and intolerances. The best experience we had was at The Crystal Palace in Magic Kingdom where you get to meet Winnie the Pooh and his Friends. Once seated, the chef came out to see us and took us around the buffet bars letting us know what things we could give Ellie. She was able to have quite a feast as so much of it was fresh and not processed junk. It was Ellie’s third birthday and they made a real fuss of her, even giving her a special chocolate brownie cake and some soya ice cream which she absolutely loved. We were all beaming and welling up at Ellie really enjoying her food.
At the end of the meal the chef came out to us with a bag full of different flours and cake mixes for us to take away. It was such a kind jesture and it really was a highlight of the holiday.
That afternoon we got to meet Mickey Mouse. There was a long-ish queue for that experience which resulted in another meltdown (and that was just me!). It’s the anticipation of what is going to happen which builds up and results in a meltdown. Despite the wobble, once we’d got into the see Mickey & Minnie, it really was magical.
Ellie had just turned three and at this point we were only a few months into this journey. Ellie wasn’t diagnosed with anything and we had yet to see a doctor who knew what was going on.
I remember whilst we were away, we all thought that Ellie had come such a long way since those dark days back in January and that she was really coming back to us. It wasn’t until a few years later that we watched the holiday videos again and realised she was far from coming back to us. There was a lot of smiling and pointing and a few words tagged together, but the chat Ellie once had was still a long way off. I can assure you however, now at age 12, the speech is most definitely back…but that’s for another day!
So, after our first experience with Kinesiology and being told that Ellie was having issues with her gut and that she was intolerant to wheat, dairy, cows milk, oats and potato we went hell for leather and took all of those things out of her diet.
We’d already asked at the doctor’s whether intollerance testing was available on the NHS – but it was restricted to allergies. The difference between them is; an allergy will show up almost immediately (such as a rash or vomitting) but an intolerance can happen several days later, which makes it doubly hard to work out what nasty food caused it.
I can’t remember how we came across The York Test – whether it was Dr Hillary on Good Morning TV or if it was word of mouth, but we found ourselves Googling it and forking out the £200+ on this comprehensive intolerance test which looked at 113 foods from a small sample of blood.
So, we ordered the kit, pricked Ellie’s finger and sent the sample back. The results took a few days to come back… and there it was – Wheat, Gluten (Gliadin) and Cow’s milk, with a borderline result on Beef and Yeast.
So, we continued with the diet and very slowly, we saw improvements from what we experienced in those dark winter months. There was still such a long way to go.
I’m not going to lie, it was hard work. Constantly planning ahead and taking a rucksack of food everywhere we went. Watching Ellie’s every move – she was two, she didn’t yet understand that she couldn’t have the biscuits at play group and why did mummy have a special one.
The ‘Free From’ aisles were a lot smaller than they are today, and didn’t even exist in some supermarkets. There was very little ordering on-line – we weren’t that computer savvy back then anyway! There was also very little choice if we went out for a meal – it was usually baked potato and beans as everything else would have some kind of a coating on them.
We were so lucky to have family on our side with these big changes to Ellie’s diet. I’ve read stories where family members don’t get on board, not believing it makes any difference and sneaking little treats because ‘one won’t hurt’. There were several occasions where it only took one little mishap for Ellie to be really poorly a few days later.
I know that back then I would never have done it without my mum’s help. She was amazing. She would be constantly researching, trying out recipes for biscuits and bread made of different flours and scouring the supermarket aisles for foods that Ellie can eat. She would be so excited ringing me up to tell me that she’d found something tasty that Ellie could have. I miss that so much.
Oddly, I seem to find myself in a similar situation right now. Ellie’s behaviour has gotten pretty erratic lately – and whilst we’d been putting it down to hormones, grief and moving up to secondary school for the past year, something doesn’t sit right. Call it Mother’s Instinct. I’m now considering doing another York Test to see to what extent these foods are not agreeing with her… because its bloody hard finding Gluten free food without Rice, Corn and Egg as a substitute for a non-stop eating Tween!
This time, I have no choice but to do it without my mum. I’m just thankful for how far ‘clean eating’ has come. There is so much more out there – whether it’s on Twitter, Instagram, Pinterest (I totally love Pinterest!) YouTube or Facebook.
So I’ve once again taken to the baking today… Cherry and Walnut Squares made with coconut oil, maple syrup, ground almonds, etc etc. I had to use an egg substitute and it didn’t turn out quite right… but practice makes perfect… or edible!
Until next time….
Love & hugs xxx
Ok, so they were actually pretty nice… they just didn’t turn out quite like the picture from the ‘The Foodie Teen’ book!!
So, you may have read in my last blog that a Kinesiology test revealed that Ellie’s body isn’t coping too well with a whole host of foods including corn, rice, yeast and the usual wheat! Cows milk and soya were ok but I’m dubious to go too full on with them as we know it doesn’t take long for her to become intolerant to them too.
So today I made my first batch of treats from a book we’d bought for Ellie for Christmas; The Foodie Team.
See below my attempt at Date and Almond Granola Bars along with the recipe and what they should look like!!
They actually taste pretty good. I didn’t have any vanilla powder so used Almond essence and chucked in a few more sultanas for good measure. My son took to cutting it up when I wasn’t looking!
There will be more to come about our story soon; tales about doing the ‘York Test’ and ‘Free From’ & Autism Florida!