Friday, 29 January 2016

Favourite Friday: Why I hope I would still have my kids

So when I say to people, "I think three is enough," they look at me as if I'm mad. I have three beautiful children and yes, two of them happen to be autistic. I was sparked into considering the possibility of their non-existence by a recent approval for a Down's Syndrome testRead more... 

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up.

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Thursday, 28 January 2016

Cookie Tots - Lovely little hedgehog is a hit

Sometimes I worry that my boys will never be able to do simple daily tasks like brushing their teeth, tie their shoes or cook a meal for themselves.  Cooking is a great way for all kids to learn and involves valuable skills for any child like measuring, sharing... and waiting.  Some of these can be difficult for kids with autism because they involve motor skills, sensory feedback and seeing things from other people's perspective like in Theory of Mind.  So I figured it was about time I think about these issues and what might work for them when doing recipes.

We've been visiting Cookie Tots, a kids cooking club, with Jane who is two and half years old.  At the club they sing and do actions to songs that teach them about cooking, hygiene and different ingredients. This can be engaging for some kids with autism who may also appreciate the structured the sessions.  

For anyone who likes their senses stimulated, there is hands on fun squashing, squeezing and learning how to cut, mix, tear and enjoy food. If your child is at the stage where they are following instructions then they may like that you get a recipe to take home with you and a special stamp too!  We make the recipe at the club and then take it home to cook. If your kids have difficulty waiting during the session you could try giving them a 'wait' token/card to hold and at home use this or an egg timer to watch while the food is cooking in the oven.

Recently we made: Seeded Tomato Bread Hedgehogs

Jane loved making this bread hedgehog. There was no kneading necessary but a bit of shaping of the dough.  If that's too sticky for your kids then you can help with this bit or use lots of flour to stop it being sticky.  Alternatively if they love getting their hands in a mess then make lots.  Adding the pumpkin seeds on top was challenging and a great fine motor skill and counting task. 

Some kids with autism avoid gluten.  If your kids are avoiding gluten you could try switching for a gluten free flour like rice flour but add in some (gluten free) baking powder to make sure your hedgehog doesn't go flat!  Picky eater Anthony enjoyed eating it.  He likes breads, pasta and pizza for comparison to your kiddies likes.

Wednesday, 27 January 2016

Getting responses using a token economy

David is in a specialist ASD unit attached to a mainstream school.  He's making progress, it's brilliant.  One of the key difficulties David faced with education was/is his self direction. David was interested in doing what David wanted to do and this not only made it difficult to teach him but even harder to evaluate what he knew and could do to start with.

This was focused on by having a simple target to getting David to follow adult instructions.  It didn't matter whether we asked David to touch his nose, put a cup on the table or pick up a ball, what mattered was he got used to the idea of systematically following instructions from an adult.

This was/is being targeted using token economy at school?  Eh, he's nearly five, isn't economics a bit of an advanced subject for him?  Indeed, token economy is actually a type of reward system.  Usually I'd be very suspect of reward systems, reward charts were completely useless when potty training David for example. But, I've a lot of faith in our specialist and it seems to be working. 

David receives tokens every time he successfully followed an instruction but this could be for any behaviour or desired outcome.  Although the tokens can often be an effective reward themselves, in most token economy systems, children are working toward a number of earned tokens which time they can trade in for something better, a reinforcer of somekind.  It's a bit like earning money and spending it on something you want.  In David's case this is playing with an IPad. 

David may be sat doing a puzzle but if he touches his knees when asked by a member of staff he gets a token.  If he points to the man when he is asked, he gets a token.  If he does anything when asked in a specific setting, he gets a token. Then he gets the IPad.  Pretty soon David understands it's good to do what he is asked. 

David can work for up to nine tokens now without needing his 'reinforcer'. It's not just for his education and at school that this has been helpful.  I can't believe he puts his yogurt pot in the bin. Or gets undressed (sometimes) or puts the IPad away. If you've read 'why sharing gingerbread men is truly amazing' you'll know what I mean.

Our current challenge appears to be that David has a limited number of reinforcers, he's only interested in the IPad and a few other toys or items so runs the risk of getting bored with his reward.  Whilst the school work on finding David something else he's willing to work for, I'm having lots of fun with David. I get tokens of his affection for free by requesting lots of kisses and I can get him to wiggle his cute nose anytime I ask. 

So, token would definitely be the word of the week. 

Our blog - Why sharing gingerbread men is truly amazing

External links
The Autism Helper - The token economy, dos and don'ts

Tuesday, 26 January 2016

SEN: Accessing specialist units or special schools

You already know your child will need extra support at school. The question is what type and where it is best for them to have it The preference is always for your child to go to a regular mainstream school if this setting can meet their needs, but that's not always possible. We knew after our experience with Anthony, our first child with ASD, who went to a mainstream school that there was no way that David, our second, could cope with it. We knew David would need a specialist unit, so what did I learn about getting him into one?

1. Special units and schools cater to different needs so you have to find out what ones might suit your child

You should be able to get a list of all the local (Borough) maintained special units and schools from your borough. This should list specialisms such as Autism, SCLN (social, communication and language needs) and BESD (behavioural, emotional and social difficulties). Or it may group into mild, moderate or severe learning difficulties.  Get the ones for your neighbouring boroughs too, they may be closer or better suited.

Look to see which ones might work for your child, then visit all of the ones you have identified with your education, health and care plan (EHCP), draft or otherwise, in your hand. Compare their offering with your child's requirements.

2. Ultimately your borough places your child and allocates places to special schools

Of course the borough take your preference into account, but its a bit of a shock to realise you actually get more say when choosing a mainstream setting than a specialist one.

Most special schools require to be named in the child's EHCP.  Make it easy for the borough to place your child where you want. Match your child's  EHCP with your preferred schools offering, facilities and abilities.  Make your preference known to the borough as soon as possible.   Then, have a back up in case it goes wrong. We were all set for one school then it had planning permission delayed and couldn't take our child as it simply didn't have space.

3. Become phone friends with your case officer

Your case officer is your voice within the borough office.  Given that the borough decides where to offer you a school place it makes sense to use this resource.  In most cases a SEN panel meets once a week to approve or discuss SEN school placements in the current EHCP process.   Your case officer can make suggestions about where to look and what panels might say. They often know where there are 'spaces' in specialist settings or can guide you on who to contact for visits.  They tend to be very busy people doing a of leg work - make sure that it's for you.

And remember you can get help or an adovate to help if you can't make these calls. Follow the link below about EHCPs for organisations that can help. 

4. Don't assume that you won't get in

Places in special schools change.  Pupils grow out of the school either in terms of age or their needs so places can open up.  The borough may be able to provide additional support to a school or unit so they can meet the needs of your child.  

In our case, we originally dismissed the school which David is now thriving at.  However, in the six months between starting and getting towards the end of his EHCP, the school was reorganised, it's staffing was changed, it was able to take more children and it suddenly became the top contender. 

5. No places?  Don't rule out independent or private special schools

We went to see a school maintained by a charity collaboration and two independent special schools.  Two of these were outside our borough.  The difficult part was actually finding out where these schools were as there is no list like the one you can get from the borough that's easy to navigate or that names all of the schools.  Often these schools were started by parents or advocates who couldn't find the right school for their children so made one. If it had not been for the planning rejection I mentioned earlier our second son, David, would now be in one of these. 

At another point we thought David was going to have to be in a taxi for 90 minutes to get to a suitable (independent) school. If there is no place suitable within a maintained school, then under the borough's legal obligation to provide suitable education to meet your child's needs that will need to place your child in a school, even if it means having to come to a fee paying arrangement or sending them out of borough.

Our blog - SEN: 5 things to know before seeking an EHCP 
Our blog - SEN: Choosing a mainstream school 

I'm not a legal or council expert, just a parent whose gone through the process a few times.

Monday, 25 January 2016

Never taught how to break the ice, in a different key

Is it possible that people with autism are still locked away?  I simply couldn't imagine being parted from my children or them being hidden from society because they happen to be autistic.  This is undoubtedly what used to happen as reported in The Daily Telegraph this Saturday by Kate Chisholm whilst reviewing 'In a Different Key' by John Donvan and Caren Zucker. 

As I read the review I was, as I have been many times, so relieved to be living in a time and country where my children are not taken to state-run institutions where they will be pumped full of various narcotics in an attempt to 'normalise' or placate their behaviour.

One of the keys parts of the review focused on the blame put on mothers for their children being autistic. According to the review, an article in Times Magazine in April 1948 ran an article that suggested these (my) 'frosted children' became so because their 'refrigerator  mothers' failed to bond with them.  I suspect it is simply that the mothers were never given the tools to break through the ice.

I remember having a feeling of disappointment after my first son had his first speech and language therapy session.  They hadn't done or said anything?  In fact all the therapist seemed to do was show me specific ways of playing with my darling boy.  As if I didn't spend all day sometimes trying to play with him.  She had pointed out a few things she was doing and gave notes to me on them afterwards.

Of course I realised that I was being given strategies to do therapy at home.  It was simple things like encouraging gap filling, encouraging requesting, encouraging eye contact and all just by changing the way I spoke and moved. Our second child needed more assistance in the form of my learning Makaton sign language and him using a picture exchange system to communicate. In both occasions, I was given the strategies and equipment to help my 'frosted children', indeed, I as given the tools to break the ice and help them access the world around them.

I'm so thankful that attitudes and 'healthcare' described were not frozen in time.  Speech and language therapy along with many other types of therapy such as occupational therapy is not simply dispensed at an institution or health centre.  Certainly for us, it's a way of expanding my sons horizons and is delivered on a daily basis with a mother's love and compassion.  And when there is a breakthrough, the results simply melt my heart.

Our Blog - Why ALL forms of communication are awesome, it's not all about talking
Our Blog - Comments from Steve Silberman on Neurotribes

The Telegraph - In a Different Key

Thursday, 21 January 2016

Cheery after chess, autism and games

Clubs are a bit hit and miss at school. We've found that after school ones seem to be a bit too much for Anthony. As a boy with ASD, ADHD and hypermobility, the sports ones require too much information processing and a lot of the clubs are sports related. Anthony was until Christmas only enrolled in a lunchtime computer club. 

Last term, all the Year 3 classes started playing chess on a Wednesday afternoon. At first I was a unsure how Anthony would react to chess.  It can seem a bit complicated and requires a lot of focus. However it turned out that rules and systems worked well for him. He totally got chess.  Most of the time he played with his teaching assistants but he started to request it at reward time. So, when the club renewal came round, I enrolled him in the Chess Club. 

He seemed keen and he received a chess set as a present for Christmas. We've had a few games but mostly they have been lessons really as we help Anthony realise what will happen next on the board. He's quite keen on using his queen a lot. He says it's because it's such a strong piece. But then he often looses her early in the game. A few times at home this has ended in tears and I wondered whether Chess Club was going to be a disaster. Mostly I was keen to ensure that he had lost a few times with me so I could see his reaction.  This way I could help him cope with loosing.  

When the day came. Anthony's teaching assistant took him to the club at lunchtime and left after a few minutes. When I collected him from school, she grabbed me before Anthony came to the door to tell me that he'd lost both his games.

My heart sank and I was prepared for the worst, but I needn't have been. He was almost pleased about it. "I'm getting lots of experience of chess and I'm seeing what others do to win." he said. 

My son may not be the king of the Chess Club but he's no pawn either.

Our Blog - Mummification mishaps - autism and dressing up at school

As listed in:

Tuesday, 19 January 2016

SEN: Choosing a mainstream school

When your child has special educational needs (SEN) it feels like there is an even greater weight to getting the right school for them. Many children with SEN can attend regular mainstream schools and have their needs met well there. Both our boys have an ASD diagnosis but only one is in a mainstream school.  Our eldest son positively blossoms in this setting. So what can I share about getting him a mainstream school?

Monday, 18 January 2016

Why I hope I would still have my kids

mum with baby later diagnosed with autism

So when I say to people, "I think three is enough," they look at me as if I'm mad. I have three beautiful children and yes, two of them happen to be autistic. I was sparked into considering the possibility of their non-existence by a recent approval for a Down's Syndrome test

We got told on Anthony's diagnosis day that it was nothing we did wrong, there was no cure and it's likely genetic which means if we had anymore kids they could also be on the autistic spectrum. If it is genetic then there could be a definitive test for it one day.  If that day had been eight years ago I might not have my beautiful kids.  

There is often mention of ASD being one of the invisible disabilities. True if you see my kids in a photo you might not tell that two of them are on the autistic spectrum but there is little doubt if you see them operating in life that they are different. Life with them is not the same as life with neurotypical kids, but that doesn't mean that it's not life and a great one at that. We have highs and lows just like everyone else. We have joys and sorrows but just because it's different to how it was expected doesn't mean it's not good.  

There always seems a pressure on families to live a perfect life.  But even that seems to have become stereotyped if you let it. Look up perfect in the dictionary and it doesn't say 'life living in an expensive house, with a big car, expensive toys and two kids performing excellently at school.'  It's not that I enjoy the fact that my kids struggle with things like busy places, school and sensory overloads. And we do try to change some behaviours that hurt or make it difficult to function.  But actually perfect means 'complete'. Well my life is totally complete with my family and that includes it's autistic elements as much as our family wide brown eyes, my husbands irritating sense of humour and my occasional bad temper. 

What's life if it's not living with and loving one another. I can't imagine how empty it might have been if I'd had a 'test'.  As our second son, David is also in the autistic spectrum, I suppose it's possible we wouldn't have had kids at all with a genetic test or prenatal screening available. If society had only shown me some of the difficulties we would have with my children or that they would have, instead of the joy. I may have had a 'career' instead although it was only after having kids that I realised I liked teaching. 

If the same society was just a bit more accepting of our neuro diversity, a test may only have been about preparing for our kids. Having all those autism training courses whilst pregnant maybe? 

I remember being relieved when our Down's Syndrome test came back as a low probability. I don't honestly know how I would have reacted had it been different. Or how I would have reacted had there been a screening for autism. 

They say that once you have kids, you can't imagine life without them.  Now I have the experience I feel my life would have been incomplete without them, autism and all.  If only society was just a bit more accepting of them and us being complete  too. 

Our blog - How autism is like our new courtesy car
Our blog - Comments from Steve Silberman on Neurotribes (neuro diversity)
Our blog - The hope I see in the kind acts of children 

The Telegraph -  Down's Syndrome people risk extinction at hands of science, fear and ignorance

It is moony tonight, extra vocabulary thanks to my autistic son

So apparently it's getting darker later? I haven't noticed and neither has Anthony. All he knows is that when he's dropped st his learning club after school it's light and when he comes out its dark. It will probably be quite a while yet before he comes out and it's still light. He makes great observations on the way home.  His latest one made me smile. He looked up at the black night and said "The moon is very bright, yes, it's very moony tonight."

I loved this. At first I thought this was a funny way of adding a suffix to a word. I'm pretty sure Anthony had already been taught about adding -ed, -ing and recently -s to words. I thought it was incredibly sweet to add -y to moon to describe the clear night as characterised by the moon. Just like it being cloudy or sunny during the day. 

Of course, I was disappointed to learn that more commonly 'moony' actually means something else. I don't think using words oddly is in any way related to Anthony's ASD, it's just part of learning and growing a vocabulary. When it's actually the wrong word this is a case of catachresis, the (accidental) application of a term to something which it does not properly denote.  Getting the meaning wrong.

Here's a couple I found that apply quite well to Anthony. 

Anthony has Attention Deficit Hyperactivity Disorder (ADHD), so would you say he was very restive?

No? Well if you think restive means peaceful or rested you'd be wrong. In fact Anthony is very restive. It means unable to keep still or silent and becoming increasingly difficult to control. 

When he's restive might he be noisome?

Generally no. Although Anthony can make a complete racket when he's constantly moving he's only seven and rarely works up a sweat. Maybe when he's older he might be noisome, which actually means to omit an odour, but then I'll just have him run around in the shower for a bit.

And is he enervated?

Yes? Well sometimes, but not if you are thinking it means energised. Enervate means to cause someone to feel drained or weakened.  Anthony can actually be enervated. One of things people often get confused about with kids with ADHD is thinking they have piles of energy. But imagine constantly being forced by your body to be on the go - it can be exhausting when you just can't stop and you are restive all the time.

And finally moony. As a boy with ASD Anthony sometimes struggles to interact with his surroundings. So, I smiled when I looked up moony online to find that it describes someone as dreamy and unaware of one’s surroundings, for example because they are in love. 

So for the past few moony nights I've smiled and been all moony, whilst remembering my moony son and his sweet moony thoughts. 


Our blog - When everything with four legs was a dog, generalising language and autism

External (source) 
Smooth - Words that mean something else  

As listed in:

  1. Life Unexpected  Little Hearts, Big Love
The Reading Residence

Friday, 15 January 2016

Favourite Fridays: I don't know how you do it

"I don't know how you do it." It's a phrase I've heard so many times. Often it's preceded by "with respect". It's hard to know whether it's a compliment or a criticism. Do I look such a mess that it seems I'm only just coping? Or are people suggesting that they 'wouldn't want my kids'? 
The last time I heard this comment I was sat on my sons hospital bed. I was sharing stories with another parent whose disabled child was in for a similar procedure as ours.  Read the full article here 

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up.

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Thursday, 14 January 2016

Why it's important that I stopped eating the leftovers

Everyone does it. There's leftovers in the fridge. It's not a mealtime and you are a little peckish so you eat it. That's not so bad. My problem was I ate it before it came off the kids plates.  It's got to be fairly common for anyone with young kids but I started to realise I was eating two meals at each sitting in secret. I didn't feel great about it and as I started to think about it the more I realised it was important that I stopped.

When Jane was two we went along to one of the local Children's Centres for her two year check up. I'm not sure what they checked, it actually appeared to be a short parenting class. All the first time mums had questions that I could answer better than the health visitor.  Its even possible I corrected her about a local service when she got the details wrong. The only useful tip I got was about child sized portions. Apparently a portion is about the size of your fist. This goes for adults, kids and toddlers alike. This was great, Jane finally started clearing most of her plate. But then, she's not the problem plate.

Our eldest, Anthony, has Autistic Spectrum Disorder and Attention Deficit Hyperactivity Disorder. He uses up a lot of energy, is super lean and so eats like a horse. His plate can easily be described as an adult size portion and virtually everyday he clears it. He's helped by the fact that he likes almost everything we put down to him. That's because we design it that way. Like his younger brother, he has issues around eating that aren't just being picky. He finds textures, particularly mixed textures difficult. He gets tired chewing food really easily. Strong flavours used to overwhelm him and he's also quite sensitive to the smell of the food.  This is great if it smells good.  He'll be excited about dinner before anyone else because he can smell it from elsewhere in the house, particularly if contains garlic.  Italian food is very popular in our home.  

So given this, Jane and Anthony were now eating most of their dinner. With only David's plate left why did I still feel like I needed to hide the fact that I was finishing his meal?

David, Anthony's younger brother also likes garlic. But only when it's on garlic bread. Like many kids with autism he has a restricted diet. He has many of the same issues Anthony has (or had), but worse. A while ago I noticed he was refusing more and more things, even some things he had eaten before. I began to think that if it continued my almost five year old child would only eat Shreddies, chicken nuggets and brown cola junky ice lollies. You may think I'm joking, but I knew of an autistic boy that only ate red baby food and cupcakes with blue icing. 

And so began the process of expanding David's diet. I'll write another time about our ABA type approach. Needless to say there is usually leftovers of rejected food everyday. I don't like waste, especially food waste, it seems so ungrateful to throw it away. I can't feed it to the dog, he's got 'food intolerances'. So I eat it. 

What's worse, is that it takes so long for David to eat the rest of the food he hasn't rejected and for us to trial through new foods that I'm usually left eating leftover food that's gone cold.  With a plastic spoon too. 

And what's a few mouthfuls? Well, I definitely don't need any more food so it's just pointless calories. But I'm also a bit of a stress eater. I think I've figured that eating the leftovers straight after they've been rejected (again) was quite depressing. It was like I was eating the failure.  I couldn't get him to eat something... again. It was as if  I had to hide what wasn't eaten. Like it was better to feel a bit guilty about eating the leftovers than feeling like a failure for not getting him to eat it.

Darling son. How dare I.

Once I realised that this wasn't a failure on anyone's part, once I saw a bit of progress was being made and once I knew that eating the remains of David's meals was making me feel bad, I suddenly felt better.

I now put David's half full plate under the pile of other plates in the sink. It's just a few mouthfuls and I still don't like throwing it away. But, it's better that I waste a forkful than waste my efforts on feeling like a flop.  David's adorable, and so are the other kids, so I can't be doing that bad a job.

Our blog -
Double Rainbow and Breakfast

Our blog - Are my kids in need of someone better?

External Links
National Autistic Society - Sensory issues

Wednesday, 13 January 2016

Gloves, glorious gloves! A moment of magic with my autistic son

Woman wearing gloves and covering her mouth

It started to get much colder this week. David's not great with wearing unfamiliar clothes. Unfamiliar things can be scary for anyone and it can be even harder if you are a kid with sensory issues. 

Two and a half year old Jane has been wearing gloves (well mittens actually) for a long time. Hilariously she even wears them eating ice lollies in the house. David's older brother has been told to put his gloves on every school day for the last two months as he scoots to school. 

I've been saying the word a lot and I guess David must have been listening and watching because when I said 'gloves on' to him, he held out his hands. 

He and I and the other kids were going to our local playground. In some ways it's better when it's cold because the playground is quieter.

David held my hand and we walked slowly down the road to the playground that's not far away at all. Did I say slowly? 

The reality is we had a great time taking a very long time to get to the playground:

David checked to see that he could still count his fingers when he had gloves on. Check! 

He made sure he could still clap. Check!

He checked that they felt soft on the outside too, by rubbing his cheeks. Check!

Then we stood still for a minute while I copied every glovey move he made. He covered his ears, then his mouth.  He put his hands like antlers, then just one antler, then the other. Then back on his cheeks, and then covering his eyes. I copied him exactly and he watched me intently and grinned hugely, and didn't notice when I peeked through whilst covering my eyes (after all, I had another child in tow).

This was almost a type of intensive interaction if you've heard of that before. 

Best of all, after we got to the park David found that he could hold on to the bars and play equipment for as long as he liked and his hands didn't get cold. We headed back home a little early when Jane slipped into a muddy puddle, but no one was upset about it. 

Great cold trip to the playground. 


Our blog - A ray of sunshine, autism in the playground 

External links

What is intensive interaction? 

Tuesday, 12 January 2016

Thinking about an EHCP?

It's been a term since David started at his specialist unit attached to a mainstream school. I've learned lots whilst getting David in here and getting the support for Anthony, his older brother, via an Education, Health and Care Plan (EHCP). Each Tuesday for the rest of January (at least) I will run Teach my child Tuesday. Here I'll post some information based on our experiences with our ASD kids about getting their special educational needs (SEN) met.   I'm not a legal or council expert, just a parent whose gone through the process a few times. Today, five things to know before seeking an Education, Health and Care Plan (EHCP).

1. Firstly, there are systems in place to help and support children in mainstream (that's 'normal) schools before you need to seek help from your borough or apply for an EHCP.

Every school gets a special educational needs(SEN) budget to spend within the school to help and support their pupils. It's different between schools as to how this is spent. Some could spend a lot of it on pencil grips and wobble cushions. I've also heard another school basically funding a 1:1 support for one of their pupils. It totally depends on each schools application of this budget to meet their pupils needs. So if you've got concerns about you child's educational needs ask their teacher or the schools SEN-Co (special educational needs coordinator).  They can create an Individual Education Plan (IEP) for your child and you may find their needs can be met without further help from the borough.

Additionally, when you seek an EHCP, the first thing you are actually requesting that your borough assess your child to see if they need one.  If your child is not getting this built in support from school, then your borough may turn your request for assessment down as it's possible their needs could be met within school already. 

2. You do not need to have a diagnosis to get an EHCP.

This is something I've seen a lot on social media. Parents desperate to get a diagnosis so they can get help for their kids at school. It can take months, even years to get a diagnosis of some conditions. The National Autistic Society have a campaign 'Why the wait' because in some places diagnosis takes so long. Some parents of children with very rare conditions have told me that actually the diagnosis didn't help in the end because no one really understood their condition anyway. 

The good news is that an EHCP is not reliant on a diagnosis - it is reliant on your child's educational needs. Our eldest son Anthony, started school with a SEN statement (the predecessor of an EHCP) and a diagnosis of ASD. Another boy in the same year started with the same support via a statement but he didn't actually get a diagnosis until four years later.

What you need is to be able to show your child needs more support than is currently available to them. Your child may be accessing school help already but needs more support or they may be getting occupational or speech and language support or something else.  Usually a child will already be on an Individual Education Plan (IEP) too. All this is the evidence to support your request for assessment for an EHCP. A diagnosis may add to this evidence but is certainly not essential. It also takes quite a few months after requesting an assessment for an EHCP to actually get one so you can send in your confirmed diagnosis later if you get it.

3. You do not need the support of your school to apply for an EHCP

I see this one a lot too. A school is being unsupportive whilst a parent is pulling their hair out. You do not need the support of your child's school or setting to apply for an EHCP. It helps to have the school support your request for assistance but it is not necessary. We requested the assessment for our eldest's SEN statement. We applied with our nursery for the EHCP for David.

It can be harder to show that your child needs more support if the school are not providing some already. However, the borough are likely to respond saying that the school should be providing certain services and this then highlights to everyone what the school can and should be doing to support your child.

4.  There is nothing wrong with having extra SEN support for your kid

Some parents have raised concerns that their kids will be labelled if they get extra help whether that's by the school SEN budget or an EHCP.  Lots of things that can be done either via the school or an EHCP will go unnoticed by their classmates. It could be anything from working in smaller groups or sitting nearer the teacher to help with concentration to handing out textbooks so your child gets a movement break. 

There are different statistics but figures saying between 20-50% of kids in primary school have some extra SEN support. 

What's important is that your child gets the education they are entitled too. Everyone's different and our very busy and pressed education system doesn't fit everyone. The system can need tweaking  your child can access it. 

Without support Anthony would not be able to access the teaching on his classroom, but with it he keeps making progress at an appropriate and enjoys school.

5. You are not alone

In addition to not being alone because many kids have SEN, you don't need to feel alone as a parents seeking that support.

There are organisations that will help you organise your request for and help you during the process of getting and submitting information for an EHCP.  It's important to remember that you are applying for an assessment for an EHCP.  Without some evidence, the borough may refuse assessment or even after this assessment your views on what support your child needs may not have been met. These organisations and other can help you through this and at a tribunal if necessary.  Here are a few but you may also find them listed under SEN in your LA website.

You can call the Contact a Family helpline for help and advice. 
Contact a Family helpline
0808 808 3555
Monday to Friday, 9:30am to 5pmFind out about call charges
IPSEA advice line
Telephone: 0800 018 4016
Monday to Thursday, 10am to 4pm and 7pm to 9pm
Friday, 1pm to 4pm

Other links
Our blog - Nervous about 'nearly' as school restarts (
Our blog - The hope I see is the kind acts of children (

Monday, 11 January 2016

Why ALL forms of communication are awesome in autism

talking and autism

"Does he have any more words yet?"

"Does he talk, does he say anything at all?"

A mum at a special needs playgroup once said to me, "I'm just desperate to hear her voice and hear her say mummy. Can you imagine not hearing that from one of your kids?"

Of course, I can.

However, I believe this mum made a basic error in her comment. True, her daughter doesn't talk, it doesn't necessarily follow that she doesn't have a voice.

Our son David has autism and no, he doesn't say any actual words. He uses makaton sign language most of the time. He sometimes uses PECS which is a series of picture cards to form sentences and he often vocalises with both of these. Without sign or PECS it would be extremely difficult for anyone to understand what he was saying. But trust me, my son has a voice.

He tells me when he wants something and tells me when he doesn't. He tells me when he's having fun and when he's distressed. And he's more likely to sign and give an effort to say daddy than mummy. After all, why request me? I'm always here.

About a year ago David's signing vocabulary started to expand far beyond the 20 or so words he knew that mostly related to asking for his favourite food items. He started signing 'swing' in the garden and 'house' when it was time for home.

One afternoon I was retrieving him from the car after returning home from his nursery. He held me tight as I went to release him from the car seat. I took the opportunity for a hug and said 'hug' as I squeezed him awkwardly. I went to get him out for a second time and he grabbed me again. This time I stood back and said and signed 'hug'. Then I asked him what he wanted. For the first time, David signed hug. I was close to tears. I praised him and he giggled, juggling around as I nearly crushed him. We continued signing and hugging for at least two minutes if not more. Soon, my daughter who was sat on the other side of the seat started asking for a cuddle too so we went into the house.

David may not say many words but we are working with him to help him say more. We have a great speech and language therapist that works with him and us. He will 'fit in' more if he talks, but even when he is older he could be like the other 25% of people with autism who are non verbal. Talking is not the be all and end all. He expressed his opinions and sometime understands situations. That's not even considering the progress he's made with his receptive language (the language he hears) such as following instructions.

I think David has a fine voice. Did you know A baby has to hear hundreds of repetitions of words to pick up them up. Everywhere they go, babies are listening and adding to their words lists. Imagine though that the baby didn't hear any of those words because they weren't engaged with them. David's had to pick up sign via a much shorter number of repetitions, just like hug above, because it's not happening everywhere.

No one signs at the shops, in the playground nor most other places we go. We don't even all sign to each other in the house, but that hasn't stopped him. And overall his I was far more delighted with his desire to sign and have a hug that I am about his perhaps odd attempt to say mummy. Showing affection seems a fantastic way for him to use his voice if you ask me.

Thursday, 7 January 2016

Favourite Friday: Follow their lead

A valuable thought to end our Bauble babbles and to continue into the new year - follow our kids.

Jane is busy make a big mess with the felt tip pens and the colouring books she got in her stocking. David was looking at a small book collection nearby. I thought I would try to engage him by picking up one of the books and looking at it. Read more

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up.

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Inset with David

There are positive and negative points to having all your kids in different schools. Not being able to hand down uniform would be a negative if any of it lasted that long. The commuting between schools is probably the most obvious.

What about having different inset days? Anthony and Jane both started back at school on Monday this week, but David had two inset days and only went back on Wednesday.  A pain if you are planning holidays but I found it a real bonus to spent some real playtime with our middle child. 

After the two drop offs, David, who is four, and I went to a nearby play gym that we haven't been to for years. We basically haven't been since David was 18 months when his brother started school and I didn't think he would remember it. Some kids with autism get very anxious about going to new places. Often though, David gets quite excited about going on a day out. This has improved since he started school. He mostly needs the support when he is in his new environment on how to behave appropriately (see 'Caution at the aquarium').

Generally at home David either has both socks and shoes on bare feet. We've been working on helping him to understand that in some places he just wears socks. He made no fuss at all as I explained 'shoes off, socks on'. 

He and I scaled the cargo nets, squeezed down the twisty slides and had an absolute ball in the ball pit. He giggled so much the balls shook around him while he played hiding. He wasn't at all phased by the other kids, some of whom were quite bigger than him, and with a bit of help was able to wait his turn appropriately. 

When it was time to go he did well. Grumbled a little bit but was quickly won over by being able to play with my phone and have a biscuit while I put his shoes and coat on. 

Jane is two years old and only in nursery on a Monday and Wednesday morning. David and I had such a good time on Monday and that we took his sister with us again on Tuesday. And after a fun hour I reminded myself just like I did in 'Why sharing gingerbread is amazing' that although David isn't talking much more than when he started in September his skills have improved immensely. And I must continue to give him the opportunity to use them. 

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Wednesday, 6 January 2016

Caution at the aquarium

Child with autism in aquarium

It sounds strange but sometimes we have to go kiddie attractions without some of the kids. We go on a recce to see what's there. It's a way of surveying the place and seeing if it's something our kids are going to like or worse yet like too much.

Jane gets sad if she's made to leave something she likes. We'll get a sticky out bottom lip, that she does really well by the way. Anthony will simply scream and dance with excitement. David's the worst though when it comes to liking things too much.  He'll sign 'no' when it's time to leave and run off. He'll usually get over it as we give him notice that it will be time to leave but it's not that that's the 'challenging' part so much.

Let's take for example last weekend. David did not join the rest of us in our trip to the sea life centre. He was going to the local playground with his grandparents while my hubby, the kids and I went to the sea life centre at Chessington. It was full of beautiful creatures and features. Jane loved the Nemo / Dory combination tank and the walk in bubble. Anthony liked the shark tunnel and big fish. The sea lions are always popular.

David might not have seen these. Looking through glass or at things in a crowd seem to either not have enough or be too overwhelming on his sensory scale.  He'd be more interested in his iPad while the other kids were excited.  David's interest and our hazard would have been the big open Ray pool and deck. I'd bet money that he would have stripped naked and jumped in the pool. 

Funny? Try restraining a five year old hypermobile (that's super flexible to some of you) autistic boy who has it is in his head that he's supposed to be playing in the water! I love his freedom of thought. The way he sees water here as no different from the beach. The way he's not deterred by the fact no one else is going in. 

I looked about to see if there was a way to avoid the Ray pool on our next visit, but there wasn't. For David,  we'll wait just a little while until he can maybe either appreciate the tank fish or is  just a bit happier following our instructions. It's a fine line between a good day out and a wet one sometimes. But we will keep looking for activities David and the rest of the pack will love 'just the right amount'. And in the meantime we had fun at the sea life centre and David had fun at the playground. 


Our blog - A ray of sunshine: autism in the playground 
Our blog - Racing clouds, David's delight 

External links 

National Autistic Society - Sensory information  

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Life Unexpected
What is Autism?
It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.
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