What a day of DRAMA!! Monumental milestones, big decisions & the runaway dog! 

Oooooh, I had a right day of it yesterday! Talk about up and down like a rollercoaster! 🎢 

I’d gone to bed the previous night in a bit of an anxious state – huffing and puffing and all that! I’d woken up not much better! 

The kids were at their Grandads for the day and getting ready was a tad more traumatic than normal. There seemed to be more distress with the hairbrushing than usual which included Ellie throwing herself on the floor and a couple shouts of “I hate you!”.  I blocked it all out and kept calm – feeling pretty proud of myself! 

However, the commute to work gave me thinking time and by the time I got into work I was feeling a little broken. 

I could only describe how I felt to my colleagues was like a broken vase that had been stuck back together but the water was starting to seep through the cracks.

A few coffees later and a natter and I started to feel a lot better until… My dad phones… “We have a little problem”.

Turned out that today would ‘The’ day that Ellie would receive her pass into womanhood! Bloody wonderful! (excuse the pun!). The one day in the last week that I’m working at the office and it decides to happen! 

I talked through what Dad needed to get at our house and spoke with Ellie – thankfully we’d already had a little practice run. I must say, she was really very sensible about it all and held it together. 

I toyed with whether I should go home and be with her and there was a little debate for both options – but I figured that as she was dealing with it and ‘things’ didn’t seem to be too bad my decision was to stay in work. I didn’t want to set a presidence that I would come running when this happened.  I’d also started to feel a little more sane being in the company of adults and I frankly wasn’t ready to go home after just an hour!!

With my brain now a little frazzled after all of that, I then made a big decision. I’d been thinking about enrolling on a six month intensive course in Social Media Management with DigitalMums. I’d had the telephone consultation- now I just needed to apply!  In my lunch hour, that is what I did… and got accepted! Holy shit! My friends and hubby had said to go for it so I figured why not! It will help me in doing this little blog, my job as a Personal Assistant is going more in the social media direction so it will help there… and with any luck, I might be good at it! 

I felt buzzing… and scared… but mainly buzzing!  My wonderful colleague had also picked me up a bottle of wine to cheer me up… the day really was getting better!

By the time I collected the kids at teatime, my dad looked a little run-ragged as they’d been arguing all afternoon, so it was a good job I’d taken annual leave for the rest of the week! 

Usual mayhem ensued at home, with most sentences starting with “can I have”,  even though they’d probably cleared the cupboards at my dad’s house!

Finally, to finish the day we decided to meet with our friends and take our dogs for a walk over the park. Both dogs are under a year old so both are equally crazy and love to run. However, since our little dog ‘Dusty’ (named after Dusty Springfield) decided to run off and cross the main road we live on, my son has been a nervous wreck with letting her off the lead. However after a few weeks of extra ‘recall training’ and being off the lead with just me, I felt confident that she would be fine – especially with her friend Maggie to run around with! 

WRONG!! 

For five minutes or so, all was fine, but the more the dogs ran around, the more anxious George got screaming at Dusty in a high pitched voice and panicking that she wouldn’t come back.  He was right to panic! 

The dog sat at the edge of the park for what felt like minutes with the five of us all screaming her name and attempting to tempt her back. However, she decided that she’d had enough and scarpered!!  Que hysterical kids!! 

They stayed with my friend while I looked for her along with my friends daughter. Nowhere to be seen.  Shit!  Now I’m starting to panic!  After running up and down the park for what felt like forever, I hear a shout from our front garden. My friend’s daughter had found her sat at the front door!!  Thank god! I felt so relieved considering she would’ve crossed the main road again and I wondered if she sat and waited like I taught her?!

Back to the kids and they’re now both hysterical, especially George who now claims he will never go out with the dog again 😬!  To say the kids were over-tired is an understatement! George couldn’t control his emotions and couldn’t stop crying! I now couldn’t wait to get them home, into bed, and reward myself for getting through that drama with a glass of something yummy! 🍷🍸

And that is exactly what I did… and guess who popped round later to join me? My poor run-ragged Dad!! 😊

Until next time, 

Love and hugs. 

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Our successful day out in the deserted forest! 

What started out as a rainy looking Monday turned out to be a beautiful sunny one, which was good as we’d been invited to a play-date in the forest. 

The kids were told just two hours before we were leaving, so that Ellie’s anxiety didn’t rise too much – though we did have worries about who was going to be there and that they would all look at us when we arrived! 

After a couple of minor wobbles on the way we arrived at our destination – The Great Wood (sounds grand doesn’t it?) and I was both delighted and surprised to see it was absolutely deserted! Nobody there, nada! For the middle of the summer holidays this is quite unusual but it was such a help for Ellie. 

After we had set up the multiple chairs, (we had more chairs than people) unpacked lots of play equipment and had a little food, all the kids went off to play ‘dens’ by the stream and had a competition of which group could make the best one. However, Ellie was still sat with us mums, not wanting to leave me. 

After my persuasion failed, it took a couple of goes from another mum and then she did it… Ellie went off with her friend to join the group… which was out of our sight. 

Whilst this isn’t a big deal to a ‘neurotypical child’ this was massive for Ellie. As she has got older, the anxiety has worsened. She will constantly check where I am at home (usually in the kitchen!) because she worries I will leave her – tempting as it is sometimes, that has never happened!!

To see our daughter feel relaxed in a group of children playing games out in the open (with no damn technology around) was joyful… and it gave me some much needed catch up time with the girls for a giggle and some inappropriate chat! 

The kids were gone for a long while playing and Ellie only checked a couple of times. All us mums felt really proud of her – this was a big deal and a real confidence boost.  

There was disappointment from the kids when it was time to leave – a sign of a good day out. 

It didn’t take long however for the switch to negativity to kick in and five minutes into the journey home I was being accused of not letting Ellie play with her friends!! WTF! 

Aaaaah, normal service resumed! It still didn’t spoil my brilliant day in the woods! 

Until next time, 

Love & hugs xxx

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 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?!

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