The Guilt Trip! Wanting ‘time out’, enjoying a rant and other things…

For a couple of weeks, Hubby and I have been planning to have some ‘time out’ together – to gather our sanity, regroup and let loose!  Nothing too extravagant – a night away in Bristol which is an hour up the road, some drinks, something to eat… more drinks!

Turned out that my wonderful Dad was able to stay overnight with the kids on Thursday of this week, so that was our perfect opportunity to ‘escape’ for exactly 24 hours!  We were soooo looking forward to it!  However, the events of Wednesday night were about to throw a big fat spanner in the works.

I mentioned in an earlier blog that Ellie is really going through it at the moment and is having regular major meltdowns.  This is usually triggered by something food related such as me not able to confirm what time we’re having tea (or ‘dinner’ if you’re a bit posh!) which then escalates into rants of  “you don’t understand me”, “what have I done?”, “I hate having Aspergers”, “I hate you”, “IDIOT”… all because I said she couldn’t eat yet more food! Wednesday night was no different!

Ellie is yet to learn the art of negotiation.  If she’d given me the puppy dog eyes and asked again, I may have caved… but going straight to meltdown definitely isn’t going to do it. This is a 12 year old, not a toddler!  So, my decision had to be stuck to… and that decision meant we endured a good hour and a half of raging.  I kept my shit together for most of it.  Hubby was starting to lose his mind and took himself out to the ‘garage’ (which has been converted into a bar/workshop/workout area) to retain his sanity.

Right at the end though, I couldn’t take anymore.  You know the feeling, it comes out before you can stop it… but then as you’re having the rant, it feels really good to just let it all out! If I’m going to get shouted at for an hour then F*ck it, I’m going to have a go! I even threw in a “I’ve ‘f*cking’ had enough” so she knew I was serious (‘bloody’ doesn’t cut the mustard anymore!).

I went into my son to apologise for the shouting. He gave me a big hug and reassured me. When shit hits the fan, this little fella always knows how to make my heart sing… and then I feel guilty for that!  Hubby regularly reminds me of how he was a little shit when he was a toddler (our son that is!) and how if he was first, we may not have had any more!!

I also felt really guilty for feeling good about losing it.  What kind of mother am I?

The guilt took over even more! How the hell could we leave the next day for our escape now? It would look like we are leaving to get away from Ellie.  She already thinks every little action is about her, I didn’t want to add to her many insecurities. On the other hand, we really needed some time out, otherwise we were in danger of losing ‘even more’ marbles and resenting Ellie for us not going!!

In the early hours of Thursday morning I felt I was caught between a rock and a hard place with no winner whatever we did.

Then I came up with a master plan!

Hubby will come home early from work as planned, to ‘surprise’ mummy with a night away and granddad will turn up just at the right moment to stay overnight.  Genius!  No stressing all day about who is looking after her, how long we would be gone for, are we ever coming back, what is she going to do while we are gone etc etc!   There was literally half hour between the ‘surprise’ and us skipping and jumping out the door to the train station!! My acting was superb, if I do say so myself!

Thankfully, they were good as gold for granddad while we were gone and we had a much needed night out – drinking cocktails, eating junk and having a laugh.

It’s taken from the time we got home at 5.00pm yesterday until right now at 11.00am as I secretly type this blog, for the first ‘post escape’ meltdown!  I don’t even know what it is about to be honest.   I’ve heard, “I can watch what I like and you can’t stop me”  and “IDIOT” shouted down the stairs with the odd scream.  We’ve had the “have I been good this morning” altercation which I’m screwed on because whichever answer I give I am on a loser. I gave the answer “yes, you’ve been lovely this morning”. WRONG ANSWER!!

When our beautiful girl is calm, she is wonderful… but when she can’t cope and loses it, I feel like I’m slowly losing my mind. At least, after having some time out with hubby, I may not enjoy a rant today!

Until next time

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Love and hugs xx

For reference… this is our Bar! Not bad eh?!

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Happy Sunday! 😊😊

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,

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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  – 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