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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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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!

The Me and Mine Project

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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!

Life With Munchers

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Monday, 27 February 2017

How to tell your child they have autism

Over a year ago, I posted some top tips for how to tell a child they have autism. It was possibly a bit rich of me, considering I hadn't yet told our girl she was autistic, but I'd done some research and wanted to keep it in mind for when the moment arose.

Well, I finally decided the time had come. 

Rainbow brain different not less

I picked a good time, I remembered one of Temple Grandin's favourite phrases (Different, not less), I took a deep breath, and I planted the seeds.

Before I tell more, I'll come clean. I had to bribe Sasha to have a 'chit-chat' with me (her words for if we ever have a talk, though it's usually when she's in the bath and she wants to tell me something long and complicated about Skylanders or Minecraft). The reward for our five minute conversation was to be fries from that famous chip shop - a guaranteed way of making sure she is in a good mood.

Sasha has been struggling to explain her upsets of late, and has frequently said that she can't find the right words to tell me. That, coupled with the fact that we are about to start some serious discussions about what happens next in terms of schooling, and a couple of articles I've read about why it is better for children to know about their autism, was the nudge I needed to try and start this conversation.

We've never tried to hide the word autism at home; our eldest knows and understands all about Sasha and her particular type of autism (Pathological Demand Avoidance). Due to Sasha being diagnosed young (she was just 2 and a half), and subsequently being signed off by the paediatrician and most other services, we've never really had to go into meetings or appointments with her where autism was discussed. Last year when she was in hospital I did have to inform medical staff of her diagnosis, but most of the talk was carried out away from Sasha's bedside in order to try and keep her anxiety levels low. 

A couple of months ago, Sasha mentioned to me about how a boy at school who she likes, and who shares her cooking sessions, was out of his classroom like she was, getting extra help. She didn't mention anything about the way he looked, interestingly. I wondered if this might be the chance I needed to start a slightly deeper conversation and so I asked her if anyone had mentioned the words 'Down's Syndrome' to her. She said 'no', so I started to try and explain, only to be met with 'oh, do I have that then?'. At that point I took a deep breath and asked if anyone had ever mentioned the word autism to her... and she shoo-ed me away, grabbing the iPad, attention totally gone and not wanting to chat any more. Not because she didn't want to hear about autism specifically, but it was clear her mind had wandered and she wanted to watch something more fun on YouTube.

I left the room, and wondered if another opportunity would present itself. To be honest, over the next two months it didn't, so I decided to create that moment myself. As Sasha gets older (she's 10 this year), it feels like she is doing more thinking generally and I was worried that she may internalise any worries about being different, and not being part of friendship groups. The girls in her class are all totally lovely with her; they accept her for who she is because they've been with her since the age of 3 or 4. But they have all moved on, and grown up; they are at the stage when they want to have girlie chats about make-up and music and go shopping together or hang out and watch movies - all things which Sasha would find difficult.

So I went to sit with Sasha, armed with our copy of the fabulous book created by Chris from Autistic Not Weird, which has a photo of Sasha on the front and inside. I had her attention (because of the fries, I'm not daft) and asked her again if she had heard of the word autism. No, she replied. So I asked if she had noticed that she found things a bit more difficult than some of the other children in her class. She thought about it for a second, and then suggested that she was more stressed more of the time than the other children. That felt like a key moment; in some small way she is understanding her struggles.

We talked a bit more, about how she has extra help from classroom assistants, and how she doesn't do homework (because it gets her too stressed), but it was fairly clear that she hasn't actually given it much thought before now. I didn't labour the point; instead I referred back to the everyone is different idea, and then I brought out the book to show her. At first, she didn't spot herself on the cover, but when I told her the rough area to look, she found her picture, but it made her want to hide her face - 'mum, you know I don't like the popularity!'. Then when she realised there was an even bigger, full page photo of her inside, she didn't want to look at it, again seemingly embarrassed by the spotlight.

What we love most about life book Autistic Not Weird

So I moved on fairly quickly (it was time to get the fries; after all, we had been talking for all of about, ooh, six minutes maybe) and I left the book at the edge of the sofa. I'm guessing it won't be looked at again for a little while, but maybe one day before too long, her curiosity will kick in and she'll want to know a little more about people like her. Her Tribe. Different, not less.

(and as a little footnote, Temple Grandin has actually been given a copy of this book - see here for proof!)

Mummy Times Two

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Friday, 24 February 2017

Pushing for a diagnosis?

There has been an article printed in the Guardian which I just couldn't ignore this week - 'Parents pushing for Special Needs Diagnosis for children'.

This has of course done the usual Facebook rounds, shared most likely by two kinds of people; those who feel somehow vindicated by this report (carried out by a provider of assessments to schools) because it mirrors their beliefs, and those, most likely parents of children with Special Needs themselves, who are completely incensed by the idea that anyone would want to make up a label to gain some sort of 'fantastical' benefit.

Hmm. Wonder if you can guess which camp I am more likely to fall into?!

As it happens, difficult though it may be to stick to on a Friday night, I am going to try and be the voice of reason here.

Whether to give a child a label or not has been discussed many times before. I feel it shouldn't be about labelling a child, it's about finding the best ways to support a child. Sometimes the best support only comes with the label; some children manage fine or may even fare better without

The gist of the article by the Guardian is that middle-class parents who know how to work the system are pushing for a diagnosis while other children slip through the net, and that more than half of teachers polled believe there is misdiagnosis among pupils. Apparently 38% (of those polled) agreed that some parents who push for their child to be recognised as having SEN (special educational needs) do it to help their youngster gain a competitive edge in exams.

Obviously as the voice of reason I'm not here to deny any of these findings, although I do find it sad that they've been reported in this way. Those who will ultimately be affected the most are not the parents who the article is aimed at, but the children, most of whom will have bona fide needs of one sort or another.

I'm guessing the first statement is actually very true; that middle-class parents, or in fact any class of parents who have taken the time to try and understand the system, will push for a diagnosis. Meanwhile, other children slip through the net because their own parents are not so proactive, or because their parents have other issues to contend with. This might be because they are suffering from financial burdens which mean it's impossible for them to travel, or to be online, or perhaps there's a language barrier, or they have a full time job, or any other reason which might make it difficult for them to research the truly baffling system.

Teachers believing in misdiagnosis is a bit of a sticking point for me from this survey though. I don't know how we decide who is ultimately best qualified to give a diagnosis - parents, teachers or practitioners who have trained in certain areas of SEN? You could argue that a teacher spends a fair amount of time with a child.... they certainly see their behaviour in the classroom most. On the other hand, parents generally spend a much larger amount of time with their child and very often deal with the fallout of demands which take place in that very classroom - should this account for nothing? Practitioners have to study for great lengths of time and may know much more than me about the workings of a brain in general... but have they been specifically trained in how each individual child with SEN is thinking, for example? Surely we can all agree, not to disagree, but that everyone has some very valid points and that it's only when we all communicate together that we can get a clear picture of a child and their needs?

The truth is that there may well be some teachers who have met one or two parents who seem to be pushing for an unnecessary diagnosis. This brings to mind benefit fraud, and the issue with disability fraud at Disney which has led to the parks cutting back on their offering for those with additional needs. Or those who park on double yellow lines when they don't need to, or those who think it's OK to park on the zig zags outside school... the truth is, there will be some parents like that in every community. If the system is set up such that there's a way to 'bend the rules', some inevitably will. I'd like to suggest that 'some' is a much smaller number than all the others who are doing their best to do right by their child. Not all parents need to be tarred with the same brush.

Reports like this are in no way helpful, and can actually be very harmful to children with additional needs who may already struggle with extra prejudices.

There are bigger issues to discuss here which I will definitely come back to in more detail in the near future. One is that I have heard from many parents of children with additional needs who have not even started out on the path to getting an EHCP* because of the stories they've heard about how difficult it is. Then there are those who have done all the hard work involved in getting an EHCP agreed for their child, but who ultimately realise that there is no suitable education provision anyway so the whole process was verging on pointless? Maybe in fairness there should be a survey done of those parents, and those results then splashed about the news headlines?

I've also heard from several parents who believe their child may have Pathological Demand Avoidance (PDA), that they are being told by some practitioners that the notion of PDA is ridiculous, a 'made-up' diagnosis. Made-up by who, exactly? Elizabeth Newson wasn't some half-crazed mum who needed an answer for her own child, she was a well respected developmental psychologist. Do her research and findings count for nothing? 

Why are some so keen to blame the parents for everything? I know it's easy to judge, and we all do it sadly on a daily basis - I see 'those types' of parents who will get the blame first. Even if the parents are struggling, it doesn't mean that the children of those parents don't have additional needs. Those children still need help. Attacking the parents and not offering support will only have a knock-on effect.

Please, before you judge, think of the children.

For more reading on this I'd recommend a survey of teacher prejudice by Starlight McKenzie, which also includes a great summary of the Whole School SEND event held on Thursday this week, and of course a comprehensive summary of the issues by Special Needs Jungle.

*(Education, Health and Care Plan - a document which should ultimately detail the support your child with SEND needs)

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