When David missed out on his Christmas show

David wasn't in last year's Christmas show. I didn't think twice about it.  This year I got a call to say, he could be in the Christmas sing along.  I'd like to say it went well. But all I can say right now is I'm watching tears drip into my Costa coffee.

Dear Health Minister: Please, I don't want to lose my son

Update: At the end of the summer 2016 The Guardian  has reported that families were struggling to find decent care after coming out of Winterbourne.  Looks like I've still got plenty to be afraid of .

Dear Sir,

I have this secret fear.  It sits way in the back of my mind and only comes out when I hear things that make me shake.... and then I think, please, I don't want to lose my son.

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 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 post has been updated - see it here.  See some related links below. 

Links
Our blog - Why sharing gingerbread men is truly amazing

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

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.

Links
Our blog - Double Rainbow and Breakfast
Our blog - Are my kids in need of someone better?

External Links
National Autistic Society - Sensory issues

Why sharing shortbread is truly amazing

Have you seen the episode of 'Friends' where Joey doesn't share food? Joey is going on a second dinner date with a pretty lady and orders an extra portion of fries 'for sharing'. He has adopted this as his strategy to avoid sharing his dinner with his date. If course it all goes wrong as it always does in sitcoms. Joey not only knocks his dinner on the floor, his system backfires when he wants to eat the dessert ordered by his date. Our son David has a strategy that's far less complicated. Try to take food away from David and he might attempt to scratch your cheeks off. That's why I nearly fell over when he handed a shortbread stick to his little sister the other day.

David was diagnosed with autism a bit earlier than his older brother. Possibly this is because we were familiar with some of the signs but looking back I had a gut feeling that David was going to be more affected than his older sibling. All kids find sharing difficult sometimes but just how do you explain sharing to a child who doesn't listen when you talk and has fundamental difficulties in seeing things from another persons point if view. Even more than that and as the Theory of Mind suggests, David may actually expect others to see things from his point if view.

This can be part of the reason children with autism see little point in communicating. David would just go and stand by the biscuit cupboard as he simply expected me to know he wanted a biscuit. After a while, if I didn't manage to guess that he wanted a biscuit then he'd start to get upset. This was particularly the case with things like biscuits or iPads. These are high value items for David. A high value item isn't dependent on financial cost but how much David wants them. These are also items he finds difficult to give up. The only real way to help him learn to cope with going without something is to practice giving it up. Start slowly by offering another high value item in exchange. Then move to switching for a lower value item, like switching a biscuit for an apple. Finally offer help giving up the high value item for nothing, we use a countdown strategy to give David time to deal with loosing what he wants.

We and the school have also recently been working with David in his ability to follow instructions. This has followed something similar to an ABA (Applied Behaviour Analysis) type activity where David has been rewarded immediately when he follows an instruction. Then he is rewarded after following two instructions, then five and then any given number so that he doesn't expect a reward after completing a specific number of requests. I think this work combined with David's greater ability to give up high value items came together when he decided to share his shortbread with his sister.

David had just asked for shortbread by combining the Makaton signs for biscuit and stick. Having retrieved the box of shortbread from the cupboard, Jane his younger sister declared she also wanted one. David had two shortbreads. I asked David to give one to Jane and used the sign for 'share'. I fully expecting him to either ignore me or understand what I was asking and therefore run away or cheat and give his sister a new one out of the box.

But he didn't. He shared his shortbread, straight away without fuss or tears. I could barely believe it. And I reminded myself that if I don't constantly help David to use the skills he learns he won't use them and I won't get the opportunity to be amazed when he does something like sharing shortbread.

Links
Our blog - Theory of Mind, double rainbow and breakfast
Our blog - Conversing about broken gingerbread men (ABA)

As listed on:

Conversing about broken gingerbread men

We don't really do Halloween in our house.  If you've read 'Rocky reality: Autism and imagination' then you would understand at least one good reason why trick or treating is not a great idea. No, the closest I'll come is decapitating and chopping the legs off gingerbread men for David.

David is a very cunning little boy.  If you didn't know any better, you'd think that he didn't know very much at all.  After all, if you ask him to point to his head, he'll probably ignore you and continue playing with his cars.  But that doesn't mean he doesn't know what you are saying or know where his head is.

There are various reasons why any child, but particularly ones like David who have ASD, won't follow directions.  They may lack the skills to carry out certain tasks, have difficulty processing words or quite often in David's case, lack motivation.  As following instructions is fairly important in terms of functioning in society, being able to do as you are asked is considered a life skill. 

Getting a child with autism to learn this can be difficult.  Some people advocate Applied Behavior Analysis (ABA) programmes or methods for children with autism.  We have found that David responds well to motivation and in this case, gingerbread.

Truth is I'm not chopping up gingerbread men as some strange Halloween ritual but as a way of interacting with David.  It wasn't long after we had gingerbread men in the house that David learned he could use Makaton and his single syllable words to request a 'biscuit man'.  Using PECS have really helped David with sentence formation too.  A few days ago when I pulled out a broken one I offered him a pair of gingerbread legs and he signed 'I want' and pointed to his legs. 

Offer David any other broken biscuit and you are likely to get a crying child. The biscuit is not right. It's broken, it's just wrong. But this seems different.  And it's wonderful that David is able to recognise the parts of a gingerbread man. It means he's using his imagination.  

And it's always good to find another thing that David will communicate with us about. So mostly, I'm going to spend Halloween offering a few legs, arms, heads and possibly bellies to David in exchange for him signing which he wants. I might even munch a few myself. 

External Links included
The Makaton Charity Homepage - Makaton uses signs and symbols to help people communicate. 
Communication Matters - PECS (Picture Exchange Comunication System)