Sports days, exam results and being proud of the progress (Blog #12)

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!

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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! 🙂

Until next time,

 

img_9537 Love and hugs xxxx

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Fun Finding ‘Free From’ Food In Florida! (Blog#11)

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!

Until next time,

img_9537-1Love & hugs xxx

We need more tests… The York Test! (Blog#10)

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!!

Free From Everything Granola Bars! (Blog #9)

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!

Until then, Love & Hugs xx

How to do it… and what it should look like!
Before… After & Ready to Eat!

Kinesiology results! Oooooh shit! (Blog#8) 

So, nine years after doing this weird practice with Ellie, I had a feeling that some of the food she is eating at the moment isn’t helping her. We’re seeing some very random behaviour that just doesn’t feel right.

It’s so hard to tell though… she is 12 so is raging with hormones… she is 12 so is gaining an attitude with every waking moment, but she is also autistic and her ‘traits’ seem to be more exaggerated lately!

So, we had the Kinesiology food intolerance test done. Ellie lay on the ‘bed’ and was given one by one, a tiny tube to hold by her cheek with different food essence (or something like that) in. She then had to hold her other arm up. If she could hold it up, the food is ok… if it dropped, it wasn’t.  I know it sounds completely weird, but it has worked before so we had nothing to lose.

Now,  I was hoping that maybe one or two foods would come up so I could eliminate them and we would see some calmer behaviour. I wasn’t expecting 11 foods to come up! Wheat, Oats, Corn, Eggs, Cheese, Beef, Fish (cod), Oranges, Yeast, Chocolate & Rice!  What the F am I going to feed her?! Weirdly, Cows Milk was ok, as was Soya, both of which used to bother her greatly.

So, I need to give this my best shot, and the good thing is we tend to know within a couple of weeks if it has made a difference and we can slowly re-introduce certain foods.  I’m going to take the weekend to look at what foods we can work with and start next week… and on the bright side, crisps are still  on the menu!! Phew!!

Until next time,  love and hugs xxx

Friday Morning Rant! The joy of non-uniform day and music festivals! (Blog#7)

It’s not often I will do this (I hope) but I’ve had a crappy morning and my first instinct was to bash out a blog.  The whole point of me doing this – along with telling our story, was to get off my chest all things I would want to talk to my mum about (double meaning to the blog you see) so hopefully after this I will feel better… otherwise I may need a trip to the local bakery as it’s a little early for wine (unless you’re in an airport!).

So the morning started in a familiar way – sleepy hubby, crazy dog, chirpy son, mildly grumpy daughter… but today is a different day – which is usually not a good thing.  It’s non-school uniform day and Glastongrove Music Festival (taking place at school for the last lesson of the day going into the evening – family can attend after school).

So first we have the drama of whether Ellie looks nice in her chosen outfit.  She’d made a really good choice and she looked lovely.  I could handle the constant asking if it was done in a nice tone of voice, but Ellie’s default setting is sarcastic/angry/loud and hyper negative so her repeatingly barking at us “do I look nice?” wears a bit thin at 7.30am!

I maybe made the mistake of suggesting that it would sound a lot nicer if she said ‘how do I look’ (said in a much gentler tone!) to which she attempted to repeat it, one angry version, one sarcastic version and one upset version.  After moving on quickly from that, I dared to check if she’d done her deodorant and perfume (as she’d worn perfume the previous day). Well, that sparked a lot of angry shouting saying I was ‘forcing her to wear perfume’.  WTF!!!!  So I told her I didn’t care either way to which she screamed “I WILL!”. Trying to keep calm, I walked away.

So the next little speed bump this morning was the the whole music festival thing.  Ellie wants us all to go, but at the same time, doesn’t want us to go and she simply can’t cope with that emotion.  She told me “I’m gonna be kinda embarrassed when you and Dad turn up later” so I said (still calm) “That’s fine, I’m happy not to come” to which she yelled – “BUT I WANT YOU TO COME”.  That too-ed and fro-ed for a bit… all going on whilst trying to get out the door for school! I dare not ask if she’s done her teeth yet, but I do! Not my best decision!

What followed was a lot of stamping, kicking things (because she is, quote; ‘so angry’), muttering, saying negative things about herself  and all the while I just want to scream my head off… and I nearly got there a couple of times… the volume in the house was definitely rising this morning!   Thankfully, our little eight-year old was being a little angel… they do that on purpose to piss the other sibling off, but I’m not complaining!  I felt awful that I couldn’t wait to drop her off at school.

Now, I get that ‘Tweens’ & ‘Teens’ can be miserable, hormonal sods that make you want to chop your own head off… but what I struggle with is the whole negative, anxiety part that autism throws in with it.  Blowing up over the smallest thing.  Every bit of my response is super analysed and seen as negative, however I say it and whatever I say.

I mentioned in my last blog about how we used Kinesiology when Ellie was small to find out if any foods were bothering her and that she’d done a few things lately that didn’t sit right with me.  Well, I have an appointment with Ellie later this afternoon to see the same lady.  I haven’t told her yet though… it’s just easier to tell her 5 minutes before we leave!

Is it wrong that part of me wants her to find something?  We know that if there is too much of something in Ellie’s body it can effect her brain function. It’s not going to take the Autism away but it might help with the occasional weird eye flicking, the stuttering and not being able to get words out.  The only thing is, if she has to cut out crisps, we’ll be in for another meltdown!

Best check the wine fridge!

Until next time…

mothersdaugter logo  Love & Hugs xx

 

 

 

 

 

Kinesiology… Kinesi-what?!! (blog #6)

So, we had already seen a bit of an improvement in Ellie’s symptoms from changing her diet, but we needed to know exactly what was bothering her.   I personally had suffered with episodes of tummy pain in the past (we’re talking 2001 here) and it got sorted out with a practice called Kinesiology.

Kinesi-what?!  It’s one of those ‘alternative therapies’ that you need to have an open mind about. We weren’t even sure if it could be done with two year old… but, it turns out you can!

We visited a practitioner who lived not too far away who saw myself, my Mum and Ellie. Now, this next bit may sound a little mumbo-jumbo to some of you, and to be honest, we weren’t really sure of it ourselves, but we gave it a go.

This is what happened….

Ellie (two years old) sat on my mum’s lap whilst I lay on the bed.  The practitioner did something with my ‘Meridians’ and cleared them and I then held Ellie’s hand so she was now working with Ellie’s body.  I know, I know, this all sounds very weird!

I then had little samples of different products placed on my chest and I had to push with my arm against the practitioners arm.  I didn’t know what she was putting on and when, but there were occasions when I couldn’t lift my arm at all!  Can you guess what I (Ellie) was weak against?  Wheat, Dairy and slightly against a few other things like potato, beef and even tomatoes. OMG… ketchup!!

This certainly helped us to pinpoint what was troubling our little girl and encouraged us to stick with the diet.  We tried a few more forms of testing such as The York Test which also confirmed similar foods.

Its been nine years since we did that test but today, I looked up the details of the same Kinesiologist.

I’ve had this niggling feeling lately that something isn’t right…. some weird eye movements, stuttering, not following simple instructions… it might be nothing… but my gut (no pun intended) is telling me to follow this up.

Until next time…

mothersdaugter logolove & hugs xxx