Autistic behaviour – Tales of a Mother's Daughter

Going with the flow & not sweating the small stuff at Christmas!

close up of christmas decoration hanging on tree — Photo by Gary Spears on Pexels.com

Excited for Christmas!

Actually, for the first time in a few years, I am excited for Christmas!

Not to sound like a miserable cow, but I must admit, the last couple of years have felt a bit shit without Mum being here. She was my Christmas. So much of how you celebrate the festive period is built around how you spent it as a child. All the traditions, the smells, the songs, the 80’s brash decorations! I loved all of it!

I certainly don’t want this to be a sad blog just before Christmas, but I know a few people that are experiencing Christmas for the first time this year without one of their parents, or a parent that is incredibly ill, and I just want you to know that you’re in my thoughts. It doesn’t seem like it now, but I want you to know that it does get just a little bit easier as the years pass.

Crying for Mum… or George Michael?

I can’t believe that this is the third Christmas without Mum. I remember the first one without her particularly well… Ellie constantly raising her glass to Nanny – which felt like a knife to the gut every time she said it, and I remember it just feeling very empty without her there.

That first Christmas was also the year that George Michael died, on Christmas Day! I’d managed to pretty much hold myself together that whole day, but when hubby came in and told me he’d passed away, the flood gates open. I’m not sure whether I was crying for Mum or George, but I just let it flow!

I was surprised at the resilience I found to get through the day… until I’d drunk my weight in gin and the news of George Michael passing away was announced! Your brain is a very powerful organ and it does everything it can to protect you – including pushing thoughts and feelings to the back of your mind so you can get on with life. However, if you need to let those feelings out… do that too. My mantra was ‘just go with it’…. Your body will tell you what you need to do.

Saving Your Sanity

To be honest, the last few years, I’ve avoided doing some things that made me think of mum at Christmastime, like shopping trips. It was just too hard to walk around and be reminded that Mum isn’t here. Seeing lots of mums and daughters picking out presents, having lunch with bags piled up next to them, I hated it! Thank goodness for Amazon – it’s been my saviour the last few years! This year however, I did drag hubby for some Christmas shopping and all was fine.

I suppose what I’m trying to say is, if you don’t feel like doing things because they feel too difficult, then don’t do them. Look after your sanity – there’s always another year.

Just chill man!

I must admit, I have been a little more relaxed about Christmas this year. I remember in the past, feeling very anxious in the lead up to it. I would want everything to be perfect, the house to be spotless, every eventually for food to be covered. But this year, I’m a little more chilled.

When you think about it, Christmas Day is just another day. We get so bloody stressed about the whole occasion but how many of us think ‘thank f@ck for that’ when it’s all over? Every year I say, I’m not going to get so worked up over Christmas this year and that I will have everything done and dusted well in advance, but as I type this I still have a load of presents to wrap and a list of food shopping that I didn’t manage to get last night on ‘The BIG Shop’! But it’s all good, it will get done at some point so there is no need to panic… and if I don’t have celery to stick under the turkey as it goes in the oven, Christmas will still be great, and nobody will actually give a shit!

Embrace the calm… while you can!

What has also helped with the feeling of Zen around this time of year, is that Ellie seems to be a little calmer. Christmas is not always a great time for children (and adults) on the autistic spectrum. For Ellie, the expectation is too much. She is still obsessed with what food is going to be eaten and when (that might come from me!) and gets excited/anxious about different things that are happening, but this year it just doesn’t feel quite so fraught. Maybe my new Zen-like state just lets it all wash over me (along with flashing the ‘Vs’ behind the fridge door). I also discovered the magic of Reiki this year… maybe that’s helped too!

Becoming a Self-Mastery Ninja!

I’ve also been doing a Self-Mastery course in the latter part of this year.

In short, it looks at ‘your own life story’ and the struggles, celebrations, and the pivots in life that we all go through. You then look at how you’ve behaved during the difficult times and look for patterns. Do you self-sabotage? Do you sit in denial? Do you move on quickly from something bad and not allow it to process? (I’m guilty of all of them!)

Learning to forgive, being mindful and practicing things like gratitude and self-care has been a big part of the course and I know it has helped me greatly over the past few months. Everything we have been through in our past, shapes who we are now, and this course has been invaluable to me in so many ways.

And finally…

If you’re still here at the end of this somewhat waffle-filled blog, I would just like to take this opportunity to thank you for sharing in my journey on the blog this year and wish you and your loved ones a Very Merry Christmas. Have fun, stay safe, don’t sweat the small stuff… and I’ll see you on the other side.

Love and hugs

TOMD xxx 🎅🏻❤️

When Magic Kingdom just isn’t so magic! Our (not so) magical stories of Florida!

Ok, that may sound a little harsh. Disney’s Magic Kingdom really IS magic, especially if you have never been before. I distinctly remember the first time my mum came with us to Florida, she stood at the top of Main Street looking up towards the Cinderella’s castle, and she cried… she was 58 at the time!! Just goes to show, all ages are touched by Disney magic.

However, when you take an autistic child to Disney, its a different story.

The first time we took both children, Ellie was seven and her brother George was three and we went the first two weeks of December. We left on a dark Thursday evening to travel up to Heathrow on the train and stay overnight to catch our flight in the morning.

Being the last day of November, we were naturally all dressed in coats, hats and scarfs when we boarded our flight… and we were to find out that this would be to our detriment by the time we got off!!

Thankfully, flight went reasonably well. Typically, George fell asleep on take off for his first ever flight! For most of the flight the kids were glued to their tv’s, and they killed time by going to the toilet multiple times. Ellie was also eating most of the way there (anything to keep her occupied). I swear it took is at least four hours to watch one bloody film!

On the landing George once again fell asleep! He was absolutely out of it and we really couldn’t wake the boy up! So trying to get out of the plane was a real struggle. Hand luggage, coats, scarves and a sleeping three-year old in my arms. We felt likethose donkeys in Spain cruelly being forced to carry luggage up a hill! Add to that, Ellie was really nervous and worried about what was coming next as we went into the airport… little did we know!

As you can imagine, the terminal is full of people queuing to get through customs. Lines and lines of passengers moving at a snail’s pace. Already Ellie was starting to get agitated. Then she asked “do you have Bellagio Bear?”

Now, Bellagio Bear (aka Daniel) was a special bear given to Ellie by her godmother and had travelled all the way from the famous hotel in Las Vegas. This bear had sat for a good few years on the shelf being ignored, but all of a sudden, he was in the limelight and had recently made it onto the Ellie’s bed and into Ellie’s arms. That’s like ‘soft toy goals’!

However, looking around, neither of us had Daniel with us. George is still snoozing and feeling like a lead weight and we are looking frantically through four sets of hand luggage for the bloody bear – nothing! Cue the whaling! Yes, the whole flight looked around to see what the screaming was about… “Daniel is gone” she wailed! We quickly had to establish with the people around us that Daniel was indeed a bear and not another child!

We knew exactly where we were sat on the plane but when the crew went back to look, Daniel was gone! I often wonder what part of the world Daniel ended up in!

For our trip I was mega organised. List after list, after list! I drew up visual itineraries for everything to help Ellie, the travelling to the hotel, the travelling on the plane and then details of where we were going each day. I also ordered a book from Disney called The little Big book of Magic which she took everywhere. It gives details about absolutely everything from the parks, to the restaurants, to the hotels and by the time we were half way through the holiday, Ellie was reading out details of the amenities in each Disney Hotel!

I also had a letter from the doctor to say that she finds queuing very difficult etc. I always worry that we’ll go into customer services and Ellie will be all smiles, greeting the staff by name and making us look complete frauds… so I go prepared. I needn’t had worried. Ellie was shaking when we went to get our Guest Assistance pass and they didn’t want to see my paperwork when I offered it up.

Thankfully, the parks are very helpful over in Orlando. The assistant passes meant that our queue time was very short so there was little chance of Ellie getting stressed. They were a godsend.

This was put to the test when we had to wait 20 minutes to get into the Beauty & the Beast attraction. By the time we got in there, Ellie was in such a state and we had to stand at the back and try and calm her down whilst other kids were getting involved with the characters and having a lovely time. It was heartbreaking.

What didn’t help that holiday was that George was also having a time of it… mainly being a difficult little 💩! I don’t know whether it was the tiredness of the holiday, or as hubby had Goggled…that boys have a surge of testosterone every six months that makes them impossible (and he’d just hit 3 1/2 years). Either way, him constantly wanting to do the opposite of what we wanted and dragging his feet under his buggy was not cool! I distinctly remember walking past families looking at us and shouting ‘Hi’ in a loud and cheery manner like some crazy woman!!

So, what happens when you book a beautiful meal with the Disney Princesses in Epcot that costs a small fortune? Well, I didn’t expect our seven year old to have a meltdown about what food she was going to eat and complaining that it was all going to be rubbish!! I don’t remember the details but the moaning and groaning really started to piss me off and I wondered why we bothered! By the time the waiter came round for our order, all I wanted was a huge glass of wine! I was fraught and on the verge of walking out, so an overpriced wine was what I had!

As soon as I took a distraught Ellie up to see the food buffet that she would have for her starter, everything changed. She knew that she would have a belly full of food and suddenly all was fine with the world! 🙄 The rest of the meal was fine and the kids met a number of Disney Princess’s. Alls well that ends well I suppose!

Most of the holiday continued with strops about queuing up, meltdowns about doing the opposite of what we wanted to do; the thing hubby and I started to look forward to the most was getting back to the appartment at the end of the day for an ice cold beer!

The truth was, Ellie was most happy when she was at the appartment, the pool or chilling in the hot tub. When you think about it, something like Disney is overwhelming for children as it is… throw in the sensory issues and I can’t imagine how hard it must be.

I remember coming home to the UKm just as exhausted and when we left, and vowed that next time it would be better… how wrong I was!

Until next time,

Love and hugs xxx <<b
when we got home, my lovely mum had searched the Internet for something that looked like Daniel Bear. A little cream bear greeted Ellie when she arrived home ❤🐻

D-DAY! Diagnosis Day… choices to be made and the surprising grief that followed.

D-DAY! Diagnosis Day… choices to be made and the surprising grief that followed.

I’m heading back to our Autism journey, back to the summer of 2010. Since ‘the dark winter’ as I call it, of 2008 we had seen many consultants, registrars, speech & language therapists, other therapists with fancy names, Autism Advisory Teachers and Child Development Practitioners. Today, we thought was going to be just another appointment with the consultant… the one we finally found that took us seriously, who could see that there was something not right and recognised a link between diet and the brain.

We’d already seen Dr McGreggor several times where she assessed Ellie’s behaviour, how she played and interacted and took a ‘progress report’ from us. What we weren’t expecting was for her to offer us a diagnosis. It had been two and a half years since we started this journey and now my heart was galloping at what she was about to say.

“Ellie is certainly on the autistic spectrum and I would say she has high functioning Autism. I would say she is borderline, and with that, you don’t have to take the diagnosis, if you’d rather not?”

I heard the words, I nodded, but it was like one of those outer body experiences. Were we being asked whether we would like to take the diagnosis? WTF!

The consultant went through the pros and cons (of which I just don’t remember now) but one was that with a diagnosis, we would be able to access better support. If having a diagnosis meant a better chance of getting help, then there was no question. Whilst I would’ve loved to stick my head in the sand and pretend this wasn’t happening, it really wasn’t an option. Ellie was still the same little girl, with or without a label. Plus, she had only just turned five years old. We had no idea how things would progress and change as she got older.

Looking back, I know it was the absolute right decision to make, as things really have changed as Ellie has grown up. For one, there seems to be an ever increasing gap between her and her peers and she continues to have a 1:1 support at secondary school. I’m sure this wouldn’t have been the case had we not made that choice.

The consultant also agreed that diet had played a huge part in Ellie’s symptoms and confirmed that if we had not changed her diet when we did, she would be in a very different place by now. The relief to hear that was immense. Thank god we did what we did and took those ‘poisonous’ foods out. I won’t lie, back in 2008 it was really hard work as the mainstream supermarkets had barely anything ‘free from’. My family, especially my mum, played such a huge part in making those dietary changes… it would’ve been so much tougher without them. I fear, that we may have even given up if it wasn’t for their support and understanding.

So, we decided to go for the diagnosis – High Functioning Autism (or Aspergers), although on our letter it actually says ‘Allergy Induced Autism’.

What I didn’t expect was how I felt in the coming weeks. Instead of relief… I felt grief. I definitely went through a grieving process for a good two weeks. Grieving over the daughter we thought we had, worrying about the things she wouldn’t be able to do, fearful for how she would ‘fit in’ with her peers and unsure of where this journey would take us next.

Until next time,

Love and Hugs xxx

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Rice, Rice Baby! What happened when another food becomes a bad guy!(Blog#14)

So, lets get back to the story. If I’m honest, most of the summer of 2008 was a bit of a blur. We had returned from Florida, which went ok considering how poorly Ellie had been in the previous months.

There’d been doctors appointments (but that’s for another blog). We’d also decided that we wanted to try for another baby. I remember this news shocking my mum as she felt that now wasn’t the best time to be thinking about trying for another child with everything that was going on with Ellie. Why would we want to risk having another autistic child? What if Ellie didn’t get better? I knew that’s what she was thinking.

Ellie had been following the diet for six months now and we felt we were getting a handle on the situation (how naive!) and considering our past complications with not conceiving in a previous life (that’s a whole other story!) we figured we may not be as lucky to get caught again anyway. Plus, we couldn’t see ourselves just having the one child – I certainly didn’t feel like I was done with the whole babies and pregnancy thing.

So, with a possible pregnancy on the cards, we decided to book a little getaway for ourselves to New York (ok, not that little) in November – at the earliest, I could be in the early stages of pregnancy – and if we didn’t do it now, we might not get around to it. Mum and Dad kindly agreed to have Ellie while we were away.

So, lets fast forward to late November. I was 12 weeks pregnant (wooo hooo!) and we were going to New York in two days but for the past week Ellie really hasn’t been very good. A lot more moany and any little instruction was met with confusion and meltdowns. Simple things like ‘sit down’ and ‘put your coat on’ was lost on her. It was clear to see that she was starting to regress again.

So, in a panic we made a quick dash to the Kinesiology lady that did the weird stuff with little bottles. Once again, I held Ellie’s hand whilst she sat on my mum’s lap and I raised my arm up (and sometimes not) each time the lady put a little bottle of something on my cheek. I didn’t know what was being tested and neither did the Kinesiologist but it turned out that along with the usual suspects, Rice was now a bad guy!

WHAT!! Something else we now had to eliminate! When we thought about it, Rice was in a lot of what Ellie was eating as a substitute to the wheat and gluten so she had now become intolerant to it. That seemed to happen pretty quickly with Soya earlier in the year which we were warned about from the York Test Nutritionists on one of our telephone appointments.

This was not great timing. We were due to go to New York in less than two days, we now needed to sort through what Ellie could eat while we were away. Thankfully, Mum was ‘on it’ even quicker than I was. She had everything sorted out ready for when we went and assured me that Ellie would be fine.

So we went to New York and had an amazing time – apart from feeling absolutely shattered from walking for 10 hours a day and growing a baby… and not being able to enjoy a beer in a New York bar 😦 We rang home often to check on Ellie and was assured that everything was fine. Apart from it wasn’t. Mum and Dad had taken Ellie to visit my brother and his family for the weekend and whilst she was there she was extremely upset, and unsettled… they just didn’t want to tell us while we were away.

By the time we got home the following Wednesday Ellie was just coming out of this withdrawal period and was starting to follow things a little better. Mum knew that had we known how bad she was on the Saturday before we flew, we may not have gone. We couldn’t believe the effect food had on her. Once again, Ellie had become intolerant to something that made her regress.

Thankfully, over the months, we managed to reintroduce Rice back into the diet. We now knew that too much of anything could cause Ellie to become intolerant.

For this last year or so (2016-2017), we have become a little more relaxed with the diet. Back in the day we were so anal – making sure there could be no contamination of wheat or dairy. However for a while now, we’ve allowed the odd bit of chocolate or a burger if we’ve been out and stuck for food options and some cheese on her gluten free pizza on ‘Pizza Friday’!

I have noticed recently though, that some of Ellie’s behaviours have become more extreme. She is getting easily confused, not understanding what I am saying, extreme mood swings and slurred speech. Of course, this could all be the process of becoming a teenager (god help us!) but when you have a feeling in your gut (excuse the pun!) you need to act on it. We’ve already had a Kinesiology test which is great if you want an immediate answer, but it revealed 11 different foods! We needed something more conclusive (ie; whether something was severe or borderline) – so yesterday, YorkTest received a small blood sample to get Ellie re-tested for food intolerance … so now we wait!

For more information on YorkTest visit: http://www.yorktest.com/products/foodscan-junior-test/

Until next time….

love and hugs xxxx

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Mixed Emotions for Little Mix! How we nearly didn’t go to the concert!(blog #13)

Back in May, we surprised the kids with tickets to Little Mix as part of their birthday present (they’re both May babies!). They were both very excited and for the last few months I’ve heard nothing but how excited they (Ellie) was for the concert.

Fast forward to the night before (Thursday). Ellie had a huge meltdown about how she was going to look rubbish, how she would “look like the donkey” (what!??), how she was going to have her hair – up/down/curly – and which ever way I suggested, it was still going to look rubbish!

Then there was more…. “Are you going to dance?” (Yes Ellie) “I don’t think you will”. “Can I dance?”… “I’m a rubbish singer”… “Shall I sing?”… “My hair is going to look rubbish”…… I zoned out!

Weirdly she said nothing about the crowds and waiting… though I know this was the underlying factor to the anxiety. There was constant shouting at me of “I’m excited for Little Mix!”. I had to resist the urge to shout ‘Tell your face then’ and just replied “Ok babe” but that just got a shout back “Are you excited?” Well, right in that moment, no I wasn’t excited. I really didn’t want to go at all.

Forty-five minutes later and Ellie had finally gone up to bed – crying and mumbling more of the same… and I’m sat with a vodka – on a school night – with work in the morning (I’m hardcore like that 😉 !). A WhatsApp moan to my best girls and a waffle on my Facebook page and I felt a little better… plus the second vodka was kicking in! (don’t judge).

Next morning… what do you think were the first words I heard? Yep, you guessed it… “I’m really excited for Little Mix” which would’ve been fine, except it was a moany, shouty noise I heard and not an excitable 12 year old! Oh god! Here we go again! There was an hour of more of the same – all whilst trying to get us out for the school run and me off to work. Well, I lasted 45 minutes before I blew my top – which actually could be some kind of a record! Hubby stayed out of Ellie’s way so as not to add to the anxiety levels! It’s really not helpful for two parents to lose it!

Later that morning, I hear that the traffic for the the previous night’s gig was horrendous. Over an hour just to get into the car park, and hours to get out again. I was really not wanting to go now. Ellie doesn’t do waiting at the best of times, so this would definitely be meltdown territory.

After much consideration, we came up with the following plan. Hubby offered to stay at home as he’s not great in traffic either (stressssss head!) and that would take the pressure off of me to try and keep both him and Ellie calm. I think the thought of a quiet night, hot tub, beer and the TV to himself may have also played a part! What a trooper! 🙂

We were also taking George’s little friend from school and her mum with us, so that would hopefully be a good distraction for Ellie. Well, the plan worked! Despite it taking well over an hour to move the last six miles, the singing in the back of the car and eating of snacks was a complete distraction and we got there meltdown free.

We were lucky at the gate as well. We arrived just half an hour before the main act – which meant the line for bag search was empty and despite a little wobble as we entered the site, Ellie was doing really well.

The concert was held outside at Powderham Castle in Devon so there were no feelings of claustrophobia and we stood quite near the back (which was handy for later as we got out first). Ellie didn’t even need her ear defenders (George wore them) and she was now genuinely excited to see her favourite group.

What happened next made all that pain and anxiety (mine as well as Ellie’s) worth it. As the girls came on, Ellie held her hand to her mouth and started to cry. She was so happy to see her girls there on stage! Granted, they were small dots from where we were, but seeing them on the big screen and seeing Ellie so ecstatic was amazing. She must have cried with joy at least half a dozen times during the concert!

We danced, we sang, we waved and even ‘slut dropped’ a few times! (did I just say slut dropped?!).

Ellie and me LMix — Finally relaxed at the gig!

As I said earlier, being near the back had its advantages. We left just before the encore (as did a lot of others) and watched the last song as we walked to the car park. I then made a sprint for the car and picked up the guys on the way out! We were out of the car park in 5 minutes! Genius!*

Apart from a scary detour up a single car sized country lane which seemed to go up into a forest and me trying to manoeuvre us past several cars coming the other way (Ellie really not keen on that – & nor was I tbh!) the evening was a complete success and I’m so glad we decided to go. Both Ellie and her brother George were still buzzing when they got up this morning.

So, I might just do it again!

*I heard later that night that two friends were stuck in the car park for over two hours! So whilst they were still trying to get out, I’d got the kids up to bed and was now sat… having a vodka! Right decision made! 🙂

Until next time….

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

So, the end of the school year is nearly here! To be honest, I don’t know how I feel about the holidays. I love the fact that there’s no routine, no lunches to prepare, no uniforms to get ready and no PE kits to hunt down! On the other hand, there is the anxiety of what we are doing for the six week stretch (and that’s just me!). If I give out a programme of activities to Ellie, I won’t hear the end of it as each situation is super analysed and questions (the same ones) asked over and over again. If I keep information under wraps, there are meltdowns that we aren’t doing anything this summer and its going to be rubbish! We actually had one of these on Sunday with two whole weeks to go! Joy!

Anyway, I digress! I want to talk about the end of term and events that our AS children find particularly difficult – Sports Days and Exam Results.

Sports Days have always been difficult – especially in the early years. The cheering, the waiting around, the heat (if we happened to have a hot day) the co-ordination required to do the races and following multiple instructions.

I remember the first sports day Ellie had with the teaching assistant running along with her. We felt a huge sense of pride, but also saddened that she wasn’t able to do it on her own like the others. She stood out as being different. What I do know, is that everyone loved her. All the parents were cheering her on and were genuinely as pleased as we were that she was competing.

Something then happened at the Year 1 Sports Day. Ellie managed to do one race, along with the assistant running with her, but everyone cheering her name and encouraging her to finish, it all got too much. Ellie sat back down in tears and didn’t want to take part in any more races. My heart went out to her. Her peers were always so caring and really looked after her – they made her feel like it wasn’t a big deal – I loved them for that.

The following year, Sports Day was rained off … twice! Aaaah, those rainy memories of 2012!

So, onto Year 3 and a major achievement! Sports Day was taking place at the local park with all of the Key Stage 2 children – some 240 children plus parents. Once again, we were apprehensive about whether Ellie would want to take part. My heart was thudding as she stood with her team mates ready for her race. I can’t tell you the pride I felt as she ran down the straight towards the finishing line. As I looked around, hubby, Mum and my Dad were all tearing up as well. Over the other side of the track, I could see Ellie’s teaching assistant wiping tears from under her sunglasses. Yes – Ellie had done Sports Day all by herself.

And by the time Ellie did her final Sports Day last summer she was nailing it!

Exams and results are also a big part of the summer term.

We were very fortunate with the SATs that Ellie took last summer, as school didn’t pile pressure on the children and we certainly didn’t with Ellie. Surprisingly, Ellie’s assistant reported that she had her best week ever at school during SATs week. All the routine and structure was a dream for Ellie. In the end, we didn’t even find out the results of the SATs – we knew that Ellie had made progress during the year which for her was the goal.

So now fast forward a year. This week we had a panic attack about this year’s exam results? Where did we lose the ‘being proud of the progress’ attitude.

Its not that we would ever compare Ellie to any of her peers, but it was just a shock to see how she did in a paper that the whole of the year took. Admittedly, it was Maths, which has never been a favourite ( Ellie used to be scared of Maths) but to see that she only got a handful of questions correct out of a score of 60 really got us worried.

The story was similar in other subjects. All I could think was ‘what are we going to do?’. I was imagining Ellie sat in her classes, not benefiting from the curriculum in any way. I couldn’t understand why they would test her on a paper that she hadn’t even been learning (Ellie does Maths at a lower level away from class).

Thankfully, Ellie is fortunate once again, to have a super teaching assistant who kindly asked the Head of Year to give me a call. Talking things over with her made such a difference. She explained the processes and the reasons to why they tested everyone the same and that for Ellie, she has made great progress during this year… not only academically, but more so socially, gaining confidence and independence in lots of aspects of school life. She has her own targets to strive towards and school were very pleased with her progress.

And that’s were it’s at… progress. We don’t need to worry about what everyone else is doing – as long as our child is moving forward, be it big or small, and most importantly, if she is happy, its all good.

So, I’m now on countdown to the start of the summer holidays! Best re-stock that wine fridge! 🙂

Until next time,

Love and hugs xxxx

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

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

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

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

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

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

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

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

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

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

Best check the wine fridge!

Until next time…

mothersdaugter logo Love & Hugs xx

The tale of the poisonous cat biscuits!

We are in full swing of the Wheat/Gluten and Dairy Free diet and Ellie is making slight improvements in terms of eye contact and speech, though a lot of other symptoms such as climbing, flapping, moaning still remained. I was also reading a book by Actress Jenny McCarthy (married to Donny Wahlberg of NKOTB fame) about her autistic son and what happened when she cut wheat, gluten and dairy from his diet. It was an almost carbon copy of our experience with Ellie. I remember reading it in tears. It’s a great book, called ‘Louder Than Words’ if you’re wondering.

Despite our best efforts, we found out pretty quickly what would happen if Ellie had an infringement on the diet.

Ellie and I were at a friend’s house on a ‘play-date’ and whilst chatting over coffee, I looked around to find Ellie eating biscuits from the cat bowl! Was she really craving wheat that badly that she needs to get a ‘fix’?

What happened next was quite unbelievable. Continue reading “The tale of the poisonous cat biscuits!”

The ‘A’ Word. Are we really talking Autism here?

The A Word…

I remember clearly – it was Boxing Day 2007 and Ellie, who was normally such a happy and sociable toddler was very upset by the visitors we had that day. She looked terrible – her eyes had black circles around them, she looked pale and her nose was constantly running. Over the following days, Ellie seemed to go even further downhill. Simple instructions such as “put your coat on” was met with moans and groans and hand flapping. Ellie stopped looking at my Nan and my mum became very quiet and speech was replaced with groans.

At a Christmas play date, a friend suggested changing her milk as her daughter was having some problems. Anything was worth trying so we changed the cows’ milk to soya milk. The change in Ellie was unremarkable. The following morning we were greeted with “Hello Mummy, Hello Daddy” instead of the moaning we had been experiencing. As days went by, Ellie became less moany and able to follow instructions again… but this didn’t last.

Over the following weeks, she started to revert back to her previous behaviour and some. The moaning became a lot worse, eye contact was going and Ellie didn’t seem to recognise close family members. We would also find her climbing into tiny spaces and constantly climbing on me – which I suppose you’d think was quite normal for a two-year-old, but for some reason, this just didn’t feel right.

This may be a little TMI… but Ellie’s bowel movements had changed. She produced what looked like ‘rabbit droppings’! She started dribbling excessively, started to eat weird non-edible things and would want to constantly be eating Weetabix.

We also had this really weird experience one night where Ellie was sat on my lap in her room, but she was looking behind me laughing uncontrollably – like she could see someone there. We jokingly said “Ellie, can you see dead people?” but the whole episode really was quite spooky!

I’ll never forget the day when my mum brought up the A word. It was a couple weeks into January and my husband Andy was working away for a few days. It was just after lunch when I got home from work and Ellie really wasn’t too good. Mum had that look about her that she was going to tell me something… and then she came out with it… “Do you think Ellie might be Autistic?”

I couldn’t believe what I was hearing! I felt sick to the stomach. She was just having some trouble with her milk and something else wasn’t agreeing with her… where on earth had this come from! I just thought it was ridiculous. Then mum mentioned a site about Allergy Induced Autism called Respectrum, run by Marilyn Le Breton and Rosemary Kessick – unfortunately, this site is no longer running. Part of the site included case studies about children and how certain foods had affected them. The comparison was unbelievable. Their stories all rang true to what we were experiencing. As we read through the case studies, it became clear that these children saw improvements when removing wheat, gluten and dairy from the diet. From the experience with milk, we knew there was definitely something in this link with food.

It was time to become Google masters and do our research…. And also tell hubby what we had found out. That bit wasn’t going to be quite as easy.

Until next time… Love & hugs xxx

The start of our Autism Journey…

Welcome to what I hope will be the first of many posts, talking about the ups and downs on living with a ‘Tween’ with Aspergers. From past experiences to future hopes and dreams… it’s all here!

Welcome to ‘Tales of a Mother’s Daughter’.

What is this all about?

This blog is primarily about the ups and downs of living with a ‘Tween’ on the Autistic Spectrum. My wonderful, funny, kind, challenging, anxious daughter is now 12 years old and on the brink of teenage years – god help me!.

From tales and tips, humour and hilarity (hopefully) and moans and groans, I’ll be waffling on about all sorts! From special wheat/dairy free diets and alternative therapies to hormones, teenage strops (and strategies to get you through it) and anything and everything in between!

I’ll be talking through past experiences as well and current ones – good and bad – offering advice… and asking for help!

So, why am I here?

I’ve been saying that I was going to start a blog about our experiences for years. I remember mentioning to my boss in an annual review at least four years ago, but never got around to starting… life just got in the way!

A lot has happened since those initial thoughts of the blog, and finally, I’ve gotten around to making a start.

The event to prompt me was the loss of my wonderful Mum. For five years she bravely battled cancer but finally lost the fight in February 2016.

Mum was my rock, my oracle, my best friend and the person who knew me inside out. Now that I no longer have her to turn to, I’m ready to start sharing tales about my daughter on this here blog – hence the name, ‘Tales of a Mother’s Daughter’. Clever huh? I hope some of the information and ideas will be useful, though I can’t promise it won’t be used for a right old moan now and again!

Our Story… the short version!

What started out as a virus for our two year old daughter turned into something life changing. Something that would challenge our strength, our belief and our fight for a diagnosis.

Our daughter Ellie was two when she was poorly in early December 2007. A couple of days of vomiting and temperature seemed nothing out of the ordinary. It wasn’t until over the Christmas period that things started to change. Eye contact with us was lost, speech which was fairly advanced had reduced to moans and groans. The ability to follow simple instructions was gone and recognition of close family reduced greatly.

After paying to see a consultant who had no clue as to what was going on and deemed Ellie’s dream world behaviour as ‘endearing’, we had no choice but to turn to Google! We took to researching and found study cases for Allergy Induced Autism that matched exactly what was happening to Ellie. The main focus in helping children in these cases was removing Wheat, Gluten and Dairy from the diet. Not knowing what else to do other than to watch our daughter’s symptoms worsen, we had no choice but to give this a go.

After going through a period of ‘withdrawal’ from these foods (not too dissimilar to drug addicts coming off heroin) three weeks later we started to see an improvement in Ellie’s speech and she started to interact with us again… but things still weren’t back to how they were before. If at any time Ellie accidently had one of the withdrawn foods, she would suffer around three days later with excruciating tummy pains, and a worsening of symptoms in eye contact, moaning etc which would then lessen over a few days. It was clear to see that there was something in this connection with food.

There we embarked on a two year journey, seeing consultants, re-telling our story over and over again, having multiple assessments. We would go through the same story of how Ellie would regress and be in pain when she had wheat or dairy but the Paediatricians we saw had never heard of a connection with Autism and food. We were made to feel like we were making it all up.

We then insisted on seeing a particular consultant who was more specialised in this field. After several appointments with Ellie, she confirmed that Ellie was indeed on the Autistic Spectrum and we finally had a diagnosis for her. We also saw a Dietician that confirmed that some children with Autism can improve when certain foods are removed from the diet – but there is a very small window of opportunity to do this. Finally we felt we were getting somewhere!

Once we got a diagnosis we started to get some help. Support groups helped us to understand what was going on and put us in touch with professionals who were more ‘in the know’.

We met with a lady called Ruth Salisbury who, once we told her our story, sat and drew a diagram of the nervous system and explained to us exactly what had happened to Ellie’s system the day she had the virus and how things hadn’t reconnected properly once the virus had been fought. She explained how wheat and dairy are not being fully broken down in her tummy and therefore their ‘proteins’ stay in the bloodstream and effect the brain.

To have someone understand what you are talking about and give you the answers to why things are happening was the biggest relief. I think I cried the whole day, retelling family and friends that this is what had happened. For two and a half years we told our story to at least half a dozen consultants that didn’t understand, just nodded and said “oh, I see”. Finally – somebody understood!

Things would have been very different if we had listened to those doctors and consultants in the early days that didn’t really understand what was going on with our daughter. If we’d taken their advice, the situation would now be a very different one. With a little belief in what we were doing and the determination to fight – we managed to reverse those dark days of minimal eye contact, minimal speech and a host of other symptoms and kept going until we got the answers we needed to hear and got the help to move us forward.

When it comes to your children, never give up on your instinct…always go with your gut. You know your children better than anyone.

Until next time… Love & Hugs xx

Linking up with:

Me Being Mummy

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