Happy Sunday! ūüėäūüėä

So happy to be finishing the day with a much more positive blog! 

We went to Kidz Rock this afternoon which is the final day of the Somerock weekend which is a big music festival in Bridgwater, Somerset (Google it!).  

Two tribute acts were playing – Ed Sheeran and Little Mix which the kids were both excited for. 

As we approached the site, the familiar shaking started and panic was setting in. Worrying that people were looking at her, that it was busy etc, etc.  Thankfully another lane opened up as we joined the queue to get in so that was one hurdle quickly jumped. 

I could see that Ellie felt anxious at the size of the circus ‘big top’ and the few thousand people at the ground, but once the ear defenders went on, the stress seem to settle. 

Thankfully, another bonus was that we are friendly with the organisers and they let us watch from the side of the stage, should we need to. Well, we did, and were so grateful to be able to do that.

We could enjoy the concert with lots of space and no stressing. It was so good to be able to relax a little and enjoy the day.  The two acts were absolutely brilliant and the kids watching the other side of the stage were loving it! 

We then skipped out just as the final song was playing so we didn’t go with the crowds and made our way home… all still smiling.

And I’m still smiling now as I sign off for the day… a day very different to yesterday… thank god! 

Until next time

Love & hugs xxx

Autism, Meltdowns and Mental Health… An honest view of not dealing with it!

Oooooh, that sounds a bit deep…. probably is for a Sunday morning tbh, but then I’ve had a good night’s sleep to recharge so this blog may be a little more coherent than it would’ve been last night (and not because of drink for a change!).

I have to be honest, we’ve probably had the worse start to a six weeks holiday in terms of Ellie’s behaviour… and its really starting to take its toll.

So, I’m going back to yesterday… We’d had an OK Saturday afternoon. ¬†We took the dog for a nice walk, rewarded ourselves with a couple of cheeky afternoon drinks in the lovely pub with the beer garden and play area (keeps George happy!) before strolling back, picking up some grub and spending the evening in the hot tub and garden.

We were enjoying a game of ‘Adults vs Kids’ (general knowledge questions) whilst sat in the tub and as usual, Ellie is talking in an aggressive loud voice to ask the questions. ¬†The simple request for Ellie to use a ‘talking voice’ started it all off. ¬†She then started to panic about what tone of voice to use and started getting aggressive towards her brother who only ever tries to help her. ¬† After 10 mins of me keeping calm I decided that I was getting far too hot in the tub (it was at 40 degrees!) and hubby and son agreed to which Ellie ranted at us “Why do you all hate me so much?”.

Here we go again! Time for the too-ing and fro-ing of “of course we don’t hate you, we love you” …. “Do you?” ….”You love Dusty (the dog) more than me”…. ¬†“I wish I wasn’t Autistic”… “What has us getting out because we’re hot have to do with you?” ¬†“Everything is not about YOU!”

We’ve had similar meltdowns most days since the holidays started – I’ve even started to keep a diary of them. They were starting to manifest well before the holidays – I’d mentioned them in the annual review at school, but now they are getting out of control. ¬†The scariest part was when Ellie came back downstairs (after being asked to go up and calm down) shouting that she was ‘calm’ (I think not!) and shaking on the sofa saying she was scared that the three of us were going to hurt her! ¬†WTF!!! ¬†Where the hell had this come from? ¬†I know she says some ridiculous things sometimes but this was at a new level! She was looking so confused and ‘different’. ¬†I can’t explain it.

Now, I know that there will be parents reading this who will think ‘ Yeah… And?’ as this is a daily occurrence – outbursts, meltdowns and for some, physical aggression. ¬†This however, is new territory for us, and I (we) are having real problems coping with it.

Lately, the anxiety, paranoia and the aggression has noticeably increased and I’m at a loss with what to do? ¬† Most people have said that it will be her hormones at work, which is probably true and up until now, that’s what I’ve put it down to. ¬†But at what point can it start to be something else? How long do I keep saying “Its the hormones”? ¬†Could this be delayed grief? ¬†Losing my mum last year hit us hard, but with Ellie it was always hard to tell. ¬†Could this just be processing now?

I’ve even found myself Googling, ‘Medications for Autistic children’. ¬†Does she need something to help her? ¬†I’ve read that Prozac has been prescribed in some cases… but Christ, if Ellie goes on the ‘happy sweets’ that would mean three out of four of us would be on it!! Yep… you read right!

This past year, both hubby and I have been taking anti-depressants. Last year was such a hard year after mum passing, and for me, after six months it really wasn’t feeling any easier (which is understandable) and it got to a point where the tiniest thing would be massive. ¬†It was like going 0-60 in three seconds instead of slowly shifting your car up through the gears.

I have to say, whatever your school of thought is on antidepressants, for us, it was the best thing we did – it really helped me feel more ‘level’ and able to deal with things… albeit that I’ve now gone from being a Crybaby to an Ice Queen! Takes a lot to get the waterworks going now!

So, I’m thinking, if it has helped me so much, could it help Ellie? ¬†Will it calm down the paranoia, the meltdowns, the aggression and the confusion? ¬†I’m doing all I can with her diet, but the brain is a very powerful machine and sometimes, getting that extra ‘crutch’ really does make a difference. ¬†Or maybe counselling is the way to go… or both!? ¬†I definitely need to think about support groups for me and Ellie so lots to think about!

Anyway, today (Sunday) we are going to a Kidz Rock festival. ¬†We’ve made arrangements to go somewhere quiet if it gets too much so we’re going to go (last night hubby was adamant we wouldn’t be going) ¬†so wish me luck!! ¬† I’ll probably blog about it later… lets hope it’s a happier one!

Until next time,

img_9537-3

Love and hugs  xxx

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Consulting Consultants and what they either don’t know… or don’t tell you!

Meek-121Wow! That’s a cynical title if ever I saw one! ¬† This picture of the kids sums up our feelings of the whole process… and it makes me chuckle every time I see it!

It took two and a half years of consultants appointments before we had Ellie diagnosed at age five.¬†During that time, only one consultant, the last one we saw, had some idea of what we were talking about in terms of Ellie’s virus, her food intolerances and her regression, but even then she couldn’t really explain it.

Some of the doctors we saw, I suppose you could say, were ‘old school’ and had very clear ideas of what Autism was – you were born with it and that is that. ¬†We felt sometimes like they didn’t believe our ‘anecdotes’ of how we had no concerns and saw no signs of Autism until Ellie got struck with a virus and then regressed within weeks. ¬† I felt like some crazy mother going on and on! ¬† Other doctors were newer to the profession so were a little more open minded but also didn’t have any experience of seeing this before.

When Ellie was three or four, she had to go into hospital to have grommets inserted into her ear because she had ‘glue ear’ and during the operation we met with the Dietitian at the hospital. This isn’t usual practice, from what I remember, our appointment was meant to be the next day and she kindly saw us whilst Ellie was ‘under’.

It was the Dietitian that told us that she had first hand experience of seeing some (not all) children on the spectrum, improve when gluten and dairy was taken out of the diet, but there was a small window of opportunity to do this. ¬†Finally! I wasn’t making this up! Why was nobody else telling me this? I get that this doesn’t work for everyone, and every child is unique, but I was willing to try anything if it meant less stress for my daughter.

She also told us the best consultant to see in terms of pursuing a diagnosis  Рso the very next appointment we had with the Paediatric team we insisted on seeing this particular consultant.

During our time seeing the consultants, I kept an ongoing record, month by month of any improvements or setbacks we were seeing.  Ellie was also having speech & language therapy and records were also kept at her preschool.

When Ellie started reception class at age four, there was an additional classroom assistant to help Ellie Рwhich unbelievably, we were fortunate to have until the day Ellie left Primary School some seven years later.  From speaking with other parents, we were very lucky to have this in place, even before the diagnosis.

We then had a few more appointments and the following year, during the summer term of her reception year, Ellie was diagnosed with high functioning Autism or Asperger’s.

Whilst this didn’t come as a surprise to us, it was a time I remember feeling like I was grieving for a good couple of weeks. ¬†Ellie was no different because she had the diagnosis, she was still our gorgeous girl, but I was grieving for the little girl we thought we had and what we’d envisaged for her. ¬†I couldn’t shake how I felt. ¬†Thankfully, that feeling didn’t last and I soon got my ‘Warrior Mother’ head back on!

I don’t know what the state of play is nowadays for those seeking a diagnosis, but I’m curious to know if consultants still fail to mention any link with food and autism, or more so, gut health and autism.

Only yesterday at my Nutritional Therapist telephone appointment, she talked about the correlation between gut health and autism. ¬†I remember back in the day, reading articles about ‘leaky gut syndrome’. ¬†Ellie was severely constipated when we took her to the first consultant and he pretty much shrugged his shoulders! Is this still the case?

Whenever I speak to someone who has concerns about their child, I always ask if they crave certain foods.  Do consultants do this?  Nobody ever did with me.  Ellie would eat cheese like it was an apple and was addicted to Weetabix Рthe two food sources she was craving she should have been avoiding.

It was when I read ‘Louder Than Words’ by Jenny McCarthy, just a couple months into our journey, I knew we had to stick to this path. ¬†Her son was experiencing something similar – though much more scary as he suffered terrifying seizures – but the elimination of gluten and diary had a profound effect on his symptoms. The day he showed his mum his swimming shorts and asked to go swimming was almost a carbon copy to Ellie taking her jeans from her pre-school bag, showing me and saying “Jeans”. ¬†I cried and cried when I read that chapter.

Getting the diagnosis did feel final, but it wasn’t until we got the diagnosis that it opened up to more help and more knowledge and helping us do all we could for our daughter… and we’re learning each and every day!

Until next time,

img_9537-3

Love and hugs xxx

YorkTest Consultation Update! 

I’ve uploaded a little video today for speed! 

I had my Nutritional Therapist appointment ‚Äčto talk ‚Äčabout Ellie’s YorkTest results this morning – so here is me waffling on about how I got on!! ‚Äč

Apologies for the moody bitch resting face at the beginning!  I also now know what my ‘thinking/pause word is … “Ummm”!!  Some people say “You know”, some say “Like” but me – looks like I say “Ummm”!! ūüė≥ūüė¨ūüėā  Now I know why those who know what they’re doing, edit their vlogs… they’re taking out their ‘ummms’!! 

‚Äč‚Äč‚Äč‚Äč
PS; Contrary to what I said on the video… we did make a visit to the beach!!

Until next time,

Love & hugs xxx

A ‘sugar-free’ six weeks holiday?

So, its Sunday evening here in rainy Somerset and we have survived week one of the six weeks holidays. ¬†I’m not going to lie… I’m wondering how I’m going to keep my head for the next five weeks! ¬† I don’t want to be a ‘Negative Nelly’ but I think this has been the hardest start to the holidays so far.

We’ve had multiple meltdowns from Ellie – sometimes not even knowing why which usually ends in her screaming and crying, saying we don’t love her, she is ugly and stupid …. you get the idea. ¬†These have occurred more regularly lately and are more extreme than ever! There have even been points in the week where we have wondered if she needs some kind of help – whether that be some form of counselling, or medication to help her with her anxiety. ¬†I truly can’t believe we are thinking this way but we have a few more weeks before I have a GP appointment booked (which was actually to discuss the RSI in my hand!).

There may however, be a very good reason for this. ¬†If you read my blog a couple of Tweeks ago you would’ve seen that Ellie can now add Yeast to her list of intolerance’s. To help with this, we made a start this week in cutting right down on sugar consumption, along with all foods containing yeast and also things that include Vinegar (which is a lot of her faves!). ¬† We have a telephone appointment in the morning with the Nutritional Therapist so the cutting back will probably be more full on this week.

What I’m wondering is, has all this extreme behaviour really been down to us cutting down on sugar? ¬†Ellie has continued to have some fruit and a little honey on her breakfast – god only knows what she would be like if she’d gone ‘cold turkey’!

Having a quick Google, its clear to see that addiction to sugar really can throw up severe symptoms when you withdraw it. ¬†On reading about things that happen when you stop eating sugar, the symptoms include anxiety, restlessness, and even depression… tick, tick and tick!

Then a video popped up on my Facebook timeline… one of those that tells you the three foods you should never eat, so as per usual, I’m sucked in! ¬†I was pleased I clicked though, as the ‘Doctor’ was talking a lot about Candida and Yeast overgrowth and what this does to our bodies. ¬†What do you think is the biggest culprit… sugar!

We’ve always known that one of Ellie’s main triggers for meltdown ¬†is ‘Food’. ¬†She is literally obsessed with it and I can never work out where she puts it (must turn after my hubby’s side of the family!). ¬†So as you can imagine, this has been an incredibly difficult week – not just for her but for all of us! ¬†I just hope that in a few weeks time she will have settled down… and I can talk to the Doc about my dodgy hand!!

Wish me luck for week two!

Until next time.

img_9537-3love and hugs xxxx

‘Free From’ Friday! Slice & Bake Shortbread (Blog #19)

img_9839

In my attempt to become a domestic goddess (its never going to happen!) I am dedicating my ¬†Friday’s blogs to a ‘Free From’ recipe. ¬†Firstly, it will give me the motivation to bake at least once in the week. Secondly, my new ‘Kitchen Mate’ that I treated myself to won’t be gathering dust considering I got it on the premise that I would save a fortune on supermarket free from foods and eventually get my money back!!! ;/

At Christmas time, we bought Ellie a book called ‘The Foodie Teen’ because Ellie loves to read recipes and they were all gluten and dairy free, so at least there was a chance that she could eat most of them (as long as they weren’t too fancy!). ¬†So, whilst the boys in my life had taken themselves off to the local swimming pool, Ellie and I decided to do some baking – starting off easy with a shortcake biscuit recipe.

Now, don’t let the smile in the picture fool you… just before this was taken, Ellie was having a wobble because 1) I wasn’t getting the ingredients out quick enough which therefore meant she wasn’t helping me (!!) and 2) the biscuits we were making were going to taste rubbish as they were plain which obviously means they’re crap! ¬† Food related meltdowns are pretty common around here! ¬†I explained that Ellie shouldn’t judge them before she’d tried them but this fell on deaf ears. ¬†So, in truth, not long after this photo was taken, she’d stropped off to her bedroom and I was left (in peace) to bake!

Thankfully, this was really easy to make Рjust put all the ingredients into the mixing bowl (or fancy Kitchen Mate!), mix together and then roll into a big fat sausage.  I added a teaspoon of cinnamon to this mixture to add a bit of spice but you could add citrus or dried fruit.  At this point you can either put it in the freezer and use at another time or cut into 1cm slices and bake.

Fifteen minutes into baking and down comes a now smiley Ellie gushing at how amazing it smells! ¬†After the frustration she’d caused me earlier, I was struggling to match her mood. ¬†It’s like living with Dory (Blue fish – Finding Nemo) living with Ellie. She’d totally forgotten that she’d pissed me off not 15 minutes before!

Anyway, once the biscuits had cooled a little (just enough so our mouths didn’t burn) it was time for the taste test. ¬†Thankfully they got the…

img_9835

So not so rubbish after all then!!

In our quest to cut down on sugar to help with Ellie’s Yeast Intolerance (more about this next week) this recipe didn’t contain any evil white sugar. ¬†It was sweetened by Maple Syrup which still isn’t great – so I might do some more Googling into what else we could use to sweeten it up (any suggestions welcome).

The recipe is from The Foodie Teen by Alessandra Peters.

Until next time,

img_9537-3Love and hugs xxxx

Research on Yeast Intolerance… OMG!! (Blog #18)

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’ ūüėČ 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! 

Until next time, 


Love and hugs xxx

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!!

‘Sequence of Events’ ¬†Hurrah for paperwork and filing cabinets! (Blog #5)

I’ve been trying hard to remember the order in which everything happened during that first year of Ellie’s illness. So much went on that it’s all a bit of a blur to be honest. ¬†Well, imagine the joy when I looked through the filing cabinet to find two files (‘Ellie Medical’ & ‘Ellie Food’) crammed full of paperwork including a typed up food diary and ‘Sequence of Events’ for the first year! Yay!

I’d genuinely forgotten all of the symptoms and pain Ellie had gone through and I’m so pleased that I documented it all. ¬†I’d done this so I could confidently talk through what was happening with any consultants we saw. You know what it’s like – you’re face to face with the Doc and everything goes out of your head… until you’re on your way home!

So, here I attach a photo of the first ‘Sequence of Events’ and the food diary. I¬†hope you can read it!

Until next time… love & hugs ‚̧

%d bloggers like this: