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Sunday, 26 March 2017

Mother's Day and Harry Potter Studio Tour

You know me, honest all the way, so I have to say that despite our hugely successful visit to Harry Potter Warner Bros Studios in Watford, my Mother's Day didn't quite turn out as planned. Don't worry, I'm still smiling, though there's a bit of a story...
Siblings at Privet Drive, Warner Bros Studios
Thanks go to the great staff at Warner Bros Studios, who, when we mentioned about Sasha's autism sent us to join a very short queue of around 15 people. That then let us in to the front of the 'holding room' before the other 100 other people booked for our time slot joined us. Sasha had to manage the wait in the holding room, which included a bit of talking and a short (ish) video about the success of the Harry Potter films, before we were allowed into the cinema room. 

There were lots of loud whispers from Sasha about 'why is this taking so long?' and 'I don't want to be here now' but we just about managed to see it through. Luckily, we were then able to get front row seats for the cinema film all about the making of Harry Potter, so she was happy with that as she had a good view - although she did have to sit there with fingers in ears because cinema films are always played SO LOUD (is that for the old people, I wonder?!). 

With hindsight, I probably should have asked to just skip those two parts of the day. Whilst amazing for everyone else, they didn't add to the experience for Sasha, who was keen to just get into the rest of the studios and run through it all as quickly as possible. I'm not actually so sure why she was desperate to visit at all if I'm honest; she's never read the books and is unlikely to, and she's not watched any of the films and would find even the first one too scary I think....

Anyhow the next three hours went pretty swimmingly, with lots of photo opportunities as you'll see from my slideshow above. It was a case of dash through everything super quickly for Sasha and I, while Daddy and Tamsin took their time and tried to enjoy it a bit... No queuing for things like broomsticks and car green screen but we did manage to do the train green screen section together as the queue there was so small. We had a short break for lunch (two pepperami and two bags of mini cheddars in Sasha's case) and finished the second half mostly together, with both girls enjoying the interactive Dobby screens.

As I stopped to take a photo in the last room, Sasha told me that I had to 'put hashtag 'the best ending' #thebestending' and added that it was 'just so magnificent'.

Steph's Two Girls at Warner Bros Studios
Magnificence at Warner Bros Studios London
Then we entered the gift shop, having warned the girls that they could have only one gift each. We nearly hit meltdown when Sasha couldn't choose between two items, but she managed to make the decision for herself. My day was made when Tamsin decided that she'd rather have the equivalent money than spend it on something she really wasn't going to use, and Sasha followed that up instantly by offering that Tamsin could share and play with her wand. Sibling love right there. So yes, as we left the attraction, I was feeling on cloud nine. I was also looking forward to seeing my own mum that evening as I'd booked a meal out for the family. 

The afternoon started to imitate a bad downhill skiing run at that point however. It took a sharp turn as Sasha was obviously trying to de-stress and she resisted leaving the house again in the afternoon to go and play in the garden of our new house, but balance was regained as we got ready to go out for our evening meal. Sasha seemed happy enough, getting dressed in a beautiful party dress - the type she never wears, as she'd always prefer comfort (preferably nothing) over looking good, usually. 

There we all were, dressed up and leaving the house, to go to a restaurant for the first time in years, and I couldn't believe my luck! On entering the restaurant, we sat down and Sasha's three year old cousin sat next to her on the sofa seats. She was happy to entertain him by trying to teach him colours for the first ten minutes. However all went disastrously wrong fairly quickly after that. 

Having been given a free glass of Prosecco, I'll hold my hands up to not spotting signs I may have otherwise acted on sooner. The general hubbub of the restaurant, the extremely long wait for our starters, and the exuberance of Sasha's three year old cousin all sadly took their toll. I offered the iPad and headphones (our standard distraction technique) but the point of no return had already been reached.

There were screams of excitement from the three year old, but strangled cries of frustration and irritation from our nine year old, who wanted to leave immediately. Fortunately in some way, the excitement of our day had obviously had an impact, and she reluctantly rested her head on my lap and fell asleep. Looking on the bright side, there was another success right there - I got to eat my tea, albeit having to stretch over her body.

Stephs Two Girls eating out

When Sasha woke up, she was still just as angry, and we needed to leave pretty much immediately.

Huge apologies to my Dad, who had to pick up the bill, and to my mum, who obviously didn't quite get the happy family meal or photos which she would have liked on her Mother's Day... but how lucky am I though that I know that they 'get' it, they understand and they support us through everything. There's always a silver lining when you look for it. 

So we'd left in a hurry and arrive back home with an angry Sasha, only to realise that both of us adults had left our house keys in the house. See, I told you it was like a downhill skiing competition, with a final spectacular fall! Luckily for us, our landlord lives nearby and was home (praise the lord!) and it was only a matter of minutes before we could get inside and start to calm Sasha down with her home comforts. She's still awake now, but starting to feel better thankfully. 

Let's not talk about the final present of the evening for me, which was something the cat left me in her litter tray... sigh, trip to the vet tomorrow to add to my to-do list! 

Anyhow the point of pouring my heart out here, as always, is not a 'poor me' post, but just a truthful picture of a day in the life of this family with a child with autism. Sasha was not having a 'tantrum', she was verging on meltdown, and despite what it might look like to an outsider, there's a huge difference. She was visibly distressed and struggling with the overload, with tears running down her cheeks. Of course I do what I can to lighten that load for her - often by not leaving the house in the first place. 

I've not even touched on the added burden all of this is to her sibling, who so wanted me to have a lovely special day - how can she really understand as an eleven year old what we struggle to understand as adults? But she tries, and she's amazing, and in my eyes she deserves the biggest medal of the day. Along with my mum of course... well, it was Mother's Day after all! We did manage a couple of good photos before the final showdown...

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Friday, 24 March 2017

House Renovation - Part 11

Wow, who ever thought that this house renovation lark would be so much fun (she says sarcastically).

Can you tell that I'm definitely 'over' decisions now - radiators, doors, paints, handles, windows, bannisters, floors etc etc (I may have mentioned these decisions before... they seem never-ending)?! 

I know, I know, I should be super grateful, so many people don't get the chance to do any of this, and I do appreciate it, honestly I do. It's just that I am Knackered with a capital K. 

Glossing paintwork is my least favourite job ever, I've decided. The builder made a slightly cheeky comment along the lines of wanting to make sure that nobody thought it was his work... I should be happy that he takes great pride in what he does I guess. I was tempted to throw the brush at him though...

So yes, there's been a lot of painting going on from me. You can't see that much of it in this update video as I've concentrated on the big changes downstairs and in the bathroom - but trust me, the painting is good. Ish.

Just over 8 months since building work started and we are reaching the end of the project (I hope). Last six weeks, so much still to do so please keep your fingers crossed for us - we will be moving in no matter what! Both excited, and petrified, by that prospect right now...

Life With Munchers

Home Etc

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SEND Stars 11

After a few weeks off (could be something to do with overload of work on our renovation project - see my update post coming soon), I'm happy to bring you another blogger in my SEND Stars series.

Everyone who has taken part in this series has a life which involves SEND (Special Educational Needs and Disabilities) in some way; some of them choose to blog about it a lot, some a little but we all share an understanding of how different life can be.

If you have time to pop over to the main blog or Facebook page, and read or even leave a quick comment, I know it will be much appreciated.

So here we go with number eleven.....


Who are you and how old are you?

I'm Jenni & am 37 years old!

Who else is in your family and what are their ages?

My husband Warren who is 35yrs old, Leo who is 12yrs old, Lucas who is 9yrs old, Reuben who is 6 yrs old & the newest addition to the family Faith who was born in June 2016.

Which members of your family have SEND (Special Educational Needs and Disabilities) or additional needs, and what are those needs?

My husband and myself are deaf , Reuben is currently undiagnosed (SWAN) and has severe learning disability, macrocephaly, white matter changes on brain, Hypermobility syndrome, Severe sleep disorder. Faith was diagnosed with a profound hearing loss and at the moment is mildly delayed but they believe she will catch up as she was very large at birth and they think this is why its taking her a wee bit longer to reach milestones.

Is there an official diagnosis and if so, what is it, at what age was it given and by who?

With Reuben there is no official diagnosis over all... he has undergone testing since he was 11wks old and is currently on the DDD study  to try and get an official diagnosis.

Faith was officially diagnosed with a significant hearing loss at 4 wks old by the paediatric audiologist at hospital

Can you list the job roles of everyone you've been involved with on your SEND journey so far?

Community Paeditrian , Audiology community paed, Neurologist, genetic consultant. Physio, OT, SALT, Disabilty team, School nurse, Teacher of the deaf, metabolic consutant, social worker, carer,Education psychologist & audiology team

Are your children in school (if so, what type of school) or home educated?

Older 2 attend their local schools, Reuben attends a school outside of our catchment but in same town – its mainstream with a specialist provision unit attached and many disabled children attend mainstream with help. Reuben goes to mainstream full time with 1:1 at all times

Faith is still too young but I hope for her to attend the same school as Reuben as they are more experienced to cater for her needs

Tell us a fact or funny story about you or your life which is totally unrelated to SEND.....

My surname is Jolly and everytime we get asked our name people comment on how its such a happy name. Now if anyone askes how we are my hubby always replies “we’re jolly”! Drives me bonkers!!


Jenni's blog is called Rainbow Dust and can be found at

She is also over on Twitter @mamajolly23 - https://twitter.com/mamajolly23

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Wednesday, 22 March 2017

Odd socks for World Down Syndrome Day

Yesterday was World Down Syndrome Day 2017 and at our youngest's school, there was an invitation for the children to wear odd socks to mark this event.

Steph's Two Girls odd socks World Down Syndrome Day
#lotsofsocks for World Down Syndrome Day
To highlight what an achievement this photo is for our girl, you'd need to know that she has always struggled with sensory issues; too much noise, too much light, and too much heat can all affect her. She has always found clothes difficult to wear; not necessarily sensitive skin as such, but just a heightened awareness of the feel of different fabrics on different parts of her body.

I've written several times over the years about the difficulties associated with clothing; funnily, as I looked back myself, I found this one from March 2012 which bemoans the lack of suitable dresses in the shops for her (particularly at this time of year - I've been looking in the past week this year and only found one). Suitable dresses are made from soft jersey, preferably with a swingy rather than tight skirt, they are short-sleeved, and they don't have any sequins or other sorts of embellishments on them which can be felt on the inside. If you see anything matching that description in the shops please do give me a shout!

Between the ages of two and four, Sasha refused to wear any socks at all. Not even in winter, when it was snowing. For a while it wasn't a huge issue as she'd wear those types of boots which are soft and furry, but then she started to refuse those too. We'd have periods where she'd get blisters from wearing pumps with no socks. Then when she did agree to wear socks again, we'd have very stressful times trying to get them on 'just right' so they didn't feel 'funny' and irritate her. Eventually, I researched and found the brilliant, but very expensive seamless socks at www.sensorysmart.co.uk. Cost is almost £6 per pair, but they have been worth every penny for the last few years.

So this makes it all the more amazing to me that Sasha agreed yesterday to wear an odd pair of socks with seams. She did this with no hesitation when I explained that it was to highlight this special day for all children like a certain boy in her school, whose company she really enjoys.

So why odd socks? The socks are because they vaguely represent the shape of chromosomes apparently. Typically developing children have 2 chromosomes on chromosome number 21, but children diagnosed with Down's Syndrome have 3, and it's known as Trisomy 21. About 2 babies are born with Down's Syndrome in the UK every day, so that's actually not as rare as some might have thought. There are some other great facts, over on the Firefly community, written by the lovely Hayley from Downs Side Up.

A couple of months ago, I had an interesting conversation with Sasha. Well, you know, it was more of a super quick chat, much more her kind of thing, but it was a 'talk' nonetheless. She'd mentioned the fact that this boy at school was playing with her, and had been doing some of the smaller group sessions with her, and I can't remember what her comment was, but it somehow prompted me to ask 'has anyone mentioned the words Down's Syndrome to you?'.

'No,' she replied, 'what's that?'. At which point I berated myself for asking a question without having an answer prepared. I made a very basic attempt at explaining it, minus the chromosomes part, and what Sasha said next took me aback slightly, I'll admit.

'Oh, is that what I have too?'

I actually found it quite refreshing that she didn't see any obvious difference, but it did highlight the fact that she now recognises that she is different from the other children and more like that boy. Quite possibly she's realised that for a while, but as she struggles with conversation it hasn't been discussed before now.

Following that chat, as I searched online for some ideas on how to explain to children about Down's Syndrome, this post from Sipping Lemonade jumped out - and it seemed to mirror my experience of telling Sasha she has autism. Maybe we don't need to tell children quite so much, but as adults, I think we should all try and educate ourselves a little more about everything to do with life, wouldn't you agree?

This infographic was designed by Firefly and I hope it helps, alongside reminding children to be kind, always:

Down's Syndrome Infographic


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