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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...

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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.....

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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!!

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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




“Our

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Friday, 17 March 2017

Siblings {March 2017}

Struggling somewhat to keep up with everything that is going on at the moment, which means that my blog sadly has to take a back seat. Half written posts will be staying in draft for a little while longer!

One thing I do want to stay on top of though, is my monthly Siblings update. I've joined in with this for so long now that it would be a shame to stop - and on the 15th of this month I managed to get a cracking photo of the girls together.




It was an unusually warm day for March and so both girls went out for an after tea play on the trampoline. It was lovely to hear them laughing and giggling together - so much has been going on lately that there just hasn't seemed much time for that. Fingers crossed that the good weather continues as it makes everything feel so much better for a while...

Another update soon on the house renovation front - and we now have a moving date, early May. Eeeek!


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Sunday, 5 March 2017

House Renovation - Part 10

A super quick update from me today - video made last week but have been a bit poorly (all together now, say 'aaahhhh') and time flies when you're not having so much fun, I've found.

House Renovation
Look upstairs... a new porthole window and a new window on the right too!

We've been through what feels like a million decisions already - bathroom furniture, sockets, light switches, radiators, windows, doors, tiles, some paint etc - but still have plenty to go. Flooring is next on the list, followed by more paint colours, bannisters, front door and other things I've not even thought of yet no doubt. I'd love to say it's all been fun, but in all honesty I can confirm there's been a few headaches along the way.

Anyhow as we inch ever closer to the final product, at snail's pace, I thought the nosey ones amongst you would like to see how it's looking right now - still a building site pretty much! Hoping the next update will be another huge step on... and that we may have more of an idea of the actual move date. Fingers crossed!



To hear some of what we went through to get to this point, check out my House Renovation Part 6 where I do a bit of a summary!


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