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!)

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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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SEND Stars 10

After a couple of weeks off (teeny weeny bit busy around here, ahem), 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 TEN.....


Who are you and how old are you?

Hi, I'm Lauren and I'm 33.

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

My family is myself, Bella age 6 and Logan 5

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

Both Bella and Logan have autism although to very different degrees. Bella is very severe whereas Logan is very high functioning.

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

Both were officially diagnosed at the Child Development Centre age 2.

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

At the start we had to see our local community pediatrician who then referred us onto the CDC for assessment and diagnosis.  We have sporadically seen a dietitian for Bella's very limited diet and we have had assessments and subsequently been discharged from Occupational Therapy and Speech Therapy (I have privately paid for Speech Therapy for both children as not available on the NHS.) Bella is still under the Orthotics department as she is very hyper-mobile and walks on her toes which can lead to problems in later life.  We have also been through Wheelchair Services to get a specialist buggy for Bella as she is unsafe to walk out and about however our current one was funded by a charity.

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

Bella goes to an autism specific school which means she has access to lots of speech therapy, music therapy, 121 teaching, sensory rooms and a host of specialized teaching methods which are made to measure rather than one size fits all, she is now in year 2.  Logan has just started a mainstream reception and is getting on really well. He loves the structure and routine and after months of transition (thanks to his excellent mainstream nursery) he is really doing well.

What would you like others outside the SEND community to know about your child's condition?

Where to start... All children with all disabilities are totally unique and different and all children with Autism are the same. My children are chalk and cheese, Bella doesn't communicate anything other than her very basic needs yet she is quite adaptable and often goes with the flow. Logan "looks normal" whatever that means however he suffers with anxiety which affects most things he does, he likes things to stay the same and often needs way more preparation for things than his sister.  As I have said before Bella uses a buggy when out and about, this isn't because she can't's because she CAN run, very fast. She can also lie down in the street and doesn't even know what road safety is. She uses a buggy for her safety and for others including me and Logan.  She also isn't toilet trained, the part of her brain that sorts that out hasn't...yet. The part that knows her times tables up to twelve and remembers virtually everything she sees works just fine but those life skills we take for granted are like mountains for her. 

Logan isn't coddled, he is really big for his age; wearing 7-8 clothes at age 5 makes people expect more from you. He struggles to talk to strangers, I'll often talk for him when he needs me to.  His needs are just less obvious than Bella's, but they are still real.

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

Before I had the kids (and actually had a social life haha) I was living in London. I was out one night and let's say I was a bit tipsy...well I ended up talking to none other than the actor Dominic Cooper. He was working on a period drama at the time and had spent all day learning court dancing, I'm not sure how but I decided that he had to give me a demo in the bar (where nobody was dancing) and for some reason he obliged.  We chatted and danced as others obviously followed his lead and then I turned him down when he asked me to come on to the next party...yeah this story just went from a comedy to a tragedy! What was I thinking??


Lauren blogs at

She also runs Square Peg Foundation, a charitable organisation doing great work supporting children with additional needs. Their website is and they can be found on Facebook at Square Peg Foundation

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Saturday, 18 February 2017

Siblings {February 2017}

My two girls, just before we set out to play invisible football in the local park, in the pitch black. Two of us were actually quite scared (there are seriously no lights in there); one was adamant that invisible football was what she was going to do that evening, no matter what. As it's rare for her to leave the house without a fuss, who was I to argue?! Invisible football is not so called because it's so dark you can't see the ball... it's because there actually is no ball and we have to run up and down a pitch pretending that there is and trying to take the ball from each other and score while someone does a running commentary. Hilarious. For the first ten minutes.

The Siblings Project photo linky is usually set for the 15th of each month and I try to get as close to that date as possible. This month, though, there were other notable happenings on that date which stopped me from posting.

It was my lovely Mum's birthday that day, and it was also the day I attended the funeral of Daisy, the daughter of my blogging friend Steph who writes at Was This In The Plan. I wanted to take this opportunity to share this picture; I'm sure wonderful Daisy will be remembered by many and I'd like to send her siblings some extra special love and virtual strength.

On the 15th, my two girls were taken up to stay with their grandparents for a couple of days so that their parents could get on with the somewhat onerous task of painting the house which is being renovated. This was a picture of us all together just before they left:

I'm happy to say they are back with us now, after a fun time away, and we managed to get a fair bit of paint on walls - look out for another renovation update soon!

The Siblings Project - Dear Beautiful

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Monday, 13 February 2017

Tricky times

Today wasn't exactly a bright start to the half term holiday week. 

That's probably the understatement of the year. 

I spent half an hour lying on the floor next to Sasha, sobbing as she put her arm round me and even stroked my head.

Luckily, our eldest girl was out having fun with one of her friends today. They went to see the new movie, Sing. I'd have loved to see that movie. I'd hoped, after our Christmas holiday success with going to see Trolls at the cinema three times, that Sasha might have wanted to go and watch Sing.

She said no. She says no to most things these days.

I'm struggling to find a way to get through to her, to convince her to leave the house for any activity at all. Her only hobbies, she tells me, are the laptop or iPad, playing Minecraft and Roblox, or watching YouTube.

Stephs Two Girls painting

Of course she has had other interests, but these days they're not often mentioned. Swimming or roller skating used to be a guaranteed reason for her to leave the house, but they're no longer working. She's tried after school clubs, including gymnastics, dance and drama, and all bar one have failed. 

She's mostly to be found lying on the floor playing on the laptop, or sitting on the sofa watching YouTube. On rare occasions she'll play Skylanders, or Mario, Kirby or a.n.other Nintendo game. We do have small flashes of the old Sasha - the couple of times she's been happy painting in our new house, or when she's decided to make a chocolate ombre cake for her young cousin, for example.

Sasha's chocolate ombre cake design

It doesn't help that I've recently been creating photo yearbooks from when the girls were young, and there are so many happy photos of us out having fun together. I miss that.

Part of me thinks I shouldn't be confessing this lack of activity and focus on screen time out loud; that 'someone' will come round and deem me an unfit mother. Or that others will judge and think they can do a better job. Surely I just need to force her outside?

Anything I do with Sasha takes a lot of careful thought and planning. Sure, I can force her out, but I'd then pay for it afterwards. That's always been the case; there's nothing new about that. 

However over the last few months, there's been a marked decrease in her activity, and her happiness. This seems to directly relate to her increased anxiety and struggles at school. She needs to de-stress more at home to compensate. I've allowed this 'falling into a rut' to happen, therefore I must be a rubbish mum. I just don't know what else to do.

That's why I was crying. I'd got to the point today where I had tried everything to persuade her to leave the house, or even to stay in the house and do some activity with me. She was having none of it, telling me I'd interrupted her at the wrong time, that she hated reading, that 'when kids get older they just do what they want to do'. She doesn't want to do anything, and yet she says the laptop all day is boring, boring, boring - but says that anything else would be boring too, so she won't do anything.

She told me to go out of her room and shut the door, again. So I flipped. I said that maybe it would be better if I just left her altogether, seeing as she didn't want to do anything with me. I'm not proud of saying it, but I'd just had enough.

I left the room, and five minutes later she followed, to stomp upstairs to her own room where she proceeded to cry noisily in a very put-on sort of way, whilst kicking the bed. She was crying angrily that it was terrible that her mum was shouting at her (I hadn't actually shouted, but I had, for once, made my feelings very clear. She didn't like it).

I went to her, to lie with her quietly, to calm her down. I didn't talk, and she didn't say much either. 

I couldn't stop the tears. She knew I was upset, and tried to comfort me in her own way, with a small arm around me, by lying on me and squashing me, by stroking my hair in an awkward way, and then finally by kissing my head (she hates kisses).

Of course all this just made me cry more. You see, there was no understanding of why I was upset, no apology, no intention to change her mind about doing anything. She walked straight back to her screen without giving it another thought. Until bedtime, when she said in a very matter of fact way 'oh, this is like when you were lying down earlier'. This though, is not defiance and selfishness. This is her disability. This is Pathological Demand Avoidance. And that is the other part of why I was crying.

Of late it's become more apparent to me quite how much of a disability this is for her. She's told me several times over the past few weeks that she doesn't know the right words to use, that she just can't explain herself. I feel her pain; I'm finding it difficult to explain this to others, to be honest. That's my main reason for sharing a less positive day on here. In some ways, Sasha's brain seems to function at a higher level than some of her peers, and yet in others she is so far behind in terms of understanding and awareness.

We are entering a much trickier phase of her life than we've yet encountered, with decisions about secondary school needing to be made imminently, puberty just around the corner and mental health issues looming as she realises just how different she is. 

Tricky for us, tricky for her. Some days all of this seems beyond difficult.

Spectrum Sunday

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