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,

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Love and hugs  xxx

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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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  – so 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 – which 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 – the 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,

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Love and hugs xxx

YorkTest Consultation Update! 

I’ve uploaded a little video today for speed! 

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

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”!! 😳😬😂  Now I know why those who know what they’re doing, edit their vlogs… they’re taking out their ‘ummms’!! 

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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)

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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 – just 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…

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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’ 😉 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

Here’s to Gin & Friendships and Psyching myself up for the holidays! (Blog #17)

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! 

Arrrrrrggggghhhh!!!!!! 

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. 

Until next time, 

Love and hugs xxx

Bliss at our fave bar, Vinos!👍🏻🍞🧀🍇🍖🍸