Thursday, 31 December 2015

Bauble babbles:Focus on key or core words

Our kids are all at different stages with their communication. At the beginning on the holidays we talked about aiming high with their communication. I can't expect the same from everyone.  Trying to get Anthony to speak more in sentences and the same for Jane is fine but that's not really the goal for David. We are after him communicating what he wants and to follow instructions.

There is lots going on during the holidays, routines are thrown out of wack and he's learning a new vocabulary for the time too. Now more then ever docs ions on key or core words are essential. While it's chaotic and busy I need to help him say what he wants without over complicating it. If he's able to sign 'want gingerbread man' then he's doing ok. I can encourage him to sign 'I want gingerbread man please' but only because I know he understands these terms. It's not going over the top. It's more important that he has his key or core words right and getting them in the right order help too. Otherwise things can be mislabelled without you noticing. The last thing I want is for David to think a gingerbread man is actually a 'gingerbread manplease' because I'm not focuses on key words. 

Thankfully, he's not lost his head yet... Although several gingerbread men have! 

Tomorrow: Last idea before school starts again on Monday
Yesterday: Ask real questions 


Notes: Thanks for reading Baubley babbles, my notes on helping my family talk over Christmas. My sons are both on the autistic spectrum and we have a two year old daughter. Our son, David is five years old and uses a variety of Augmented and Alternative Communication (AAC) to talk. Every school day till school restarts I'll post a one thing I'll be keeping in mind to help us all communicate over the festive holidays. Maybe some things will be of interest to you too.

Wednesday, 30 December 2015

Bauble babbles: Ask real questions

Isn't every question a real question? A question by definition is expressed to elicit information, but it's important that it's not information you already know. 

David likes figures of all types. For Christmas he was given Clangers figured, Twirlywoos and a lovely wooden figure nativity set. The nativity set included three wise men or kings (one on a camel), a baby, an angel, a sheep and the other obvious figures but I knew David would be able to sign these ones. I could try to test him and make him practice his words by asking 'what is that' and pointing or holding up figures but this is exactly the pointless task I need to avoid. It's a question I know the answer to and even more that that, he probably knows o know the answer as well. So why would he bother responding? 

Much better I ask him an actual question, who do you want to play with? Or which toy next? This way we can communicate with purpose and practice too. 

Tomorrow:More ideas for communicating
Yesterday: Always make it possible to communicate

Notes: Thanks for reading Baubley babbles, my notes on helping my family talk over Christmas. My sons are both on the autistic spectrum and we have a two year old daughter. Our son, David is five years old and uses a variety of Augmented and Alternative Communication (AAC) to talk. Every school day till school restarts I'll post a one thing I'll be keeping in mind to help us all communicate over the festive holidays. Maybe some things will be of interest to you too.

Tuesday, 29 December 2015

Bauble babbles:Always make it possible to communicate

Today was the first since before Christmas that it wasn't raining. We took the kids to the park. We are just at the point now of being able to go short distances without a buggy. It's not for the two year old, it was for our four year old with ASD. It was very difficult for him to follow instructions and difficult to keep him safe. But we can just about do it now. 

Another thing we don't have to take out is the PECS book. This time last year we took it most places because David used it more often. 

I've spoken to several mums who didn't want to use PECS because it was impractical dragging a book around everywhere. I totally understand. I used to take photos on my phone of the cards so when the book was awkward we can refer to photos of it on the mobile. It's not as good as the book but if we take away a communication device we take away Davids opportunity to communicate.  So it goes with us.

Now, David is a serious Makaton user. But whatever he uses we will always need to have it available, even at this busy time of year. 

Tomorrow: more ideas to help us talk over the holidays
Yesterday: Wait for it...

Links
The Makaton Charity

Notes: Thanks for reading Baubley babbles, my notes on helping my family talk over Christmas. My sons are both on the autistic spectrum and we have a two year old daughter. Our son, David is five years old and uses a variety of Augmented and Alternative Communication (AAC) to talk. Every school day till school restarts I'll post a one thing I'll be keeping in mind to help us all communicate over the festive holidays. Maybe some things will be of interest to you too.

Monday, 28 December 2015

Bauble babbles: Wait for it...

Let's start the week with one of my favourites. Waiting. Bless my kids, waiting is not one of their talents, but thankfully I've learned that my ability to wait is a virtue when it comes to my boys communicating.

When the boys see so much it can be hard for them to filter the information they need from a question. Like a computer chugging along and slowing down when it has lots of tasks going on, my boys need time to work. They need time to process and then act. 

David needs plenty to time to form his thoughts into a communication. I need to wait. Eventually he manages to Makaton that he wants to watch Toy Story 3. Great - I'll put it on. 

Anthony needs lots of time to process and understand what I'm saying. I need to wait. At the pantomime today I took a snack with us so he eat something familiar. He was prepared for the idea of having ice cream during the interval but when I asked him I still had to wait for about 20 seconds for him to process what I was saying and accept my suggestion. 

20 seconds doesn't sound like a long time? Try it in the middle of a conversation, it feels like an age. After getting the ice cream, he had just two spoons from the tub. Anthony was then finished with it and returned to his familiar rice cakes. 

I'm not at all bothered that he only had a bit of ice cream. In fact it's quite daring if Anthony to eat ice cream that's not presented in a fine (as it should be). But if I'd not waited he'd have missed out on this theatre tradition and perhaps been disappointed later.

So good waiting, and watching of Toy Story 3 and nibbling of ice cream.

Tomorrow: more tips to talk over the festive season 

Notes: Thanks for reading Baubley babbles, my notes on helping my family talk over Christmas. My sons are both on the autistic spectrum and we have a two year old daughter. Our son, David is five years old and uses a variety of Augmented and Alternative Communication (AAC) to talk. Every school day till school restarts I'll post a one thing I'll be keeping in mind to help us all communicate over the festive holidays. Maybe some things will be of interest to you too.

Friday, 25 December 2015

Bauble babbles: Use their choice of communication

David uses both PECS and Makaton to communicate but he's not forced to use either of them instead of the other. Some people may use programmes like Proloquo2go or a talker device too.

If David manages to communicate that he wants to watch The Polar Express using key words with either his PECS or his Makaton sign I'm not going to force him to repeat it with the other device. This kind of exercise will only confuse him, no one else has to repeat themselves? I've found that if David has communicated to me asking him to repeat this only irritates him and causes him stress.  And despite my preference for Makaton, if he chooses PECS that's fine too.  Imagine the upset on Christmas Day if I asked him to request a present again because he used his PECS book instead of his Makaton?  I don't think so. The important thing is he communicates as best he can.... and that he gets another Christmas present... and to watch The Polar Express of course!

Yesterday - Modelling language 
Monday - more ways to help us communicate

Links
The Makaton Charity
Communication Matters - PECS

Notes: Thanks for reading Baubley babbles, my notes on helping my family talk over Christmas. My sons are both on the autistic spectrum and we have a two year old daughter. Our son, David is five years old and uses a variety of Augmented and Alternative Communication (AAC) to talk. Every school day till school restarts I'll post a one thing I'll be keeping in mind to help us all communicate over the festive holidays. Maybe some things will be of interest to you too.

Thursday, 24 December 2015

Bauble babbles: Model the communication

Today it's about model communication. David's default communication method is Makaton. But that means it's my default when talking to him and sometimes when talking to the other kids too. If he's going to use his Makaton he has to know how. I wouldn't expect Jane our two year old to speak if I never spoke to her - same for David and his signing.

If I'm asking David if he'd like a mince pie, I need to use signs just like he does when I'm asking the question. I'm looking directly at him, just like he should look at me. I'm talking and signing just like he should. And I'm using the language he needs to understand, reply and be able to request again. It also means if I'm using a sign either I don't know or is unfamiliar that I can introduce it for practice in a meaningful way. For mince pie, I signed 'sweet' and a mini pie 'crust' sign. 

Whatever I'm using, I'm trying to do it myself and be consistent. Though I guess we might go through a fair few mince pies! 

Tomorrow - Use their communication choice
Yesterday - Reading our conversations social story

Links
The Makaton Charity - Christmas vocabulary

Notes: Thanks for reading Baubley babbles, my notes on helping my family talk over Christmas. My sons are both on the autistic spectrum and we have a two year old daughter. Our son, David is five years old and uses a variety of Augmented and Alternative Communication (AAC) to talk. Every school day till school restarts I'll post a one thing I'll be keeping in mind to help us all communicate over the festive holidays. Maybe some things will be of interest to you too.


Wednesday, 23 December 2015

Bauble babbles:Reading our conversation social story

Our Baubley babbles are my notes on helping my family communicate over Christmas.

Today is about using a social story to help with communication. Social stories work really well for some autistic children, and I think could help a neuro-typical child with a particular behaviour. Anthony has a social story that's about have conversations and in particular speaking in full sentences. 

Social stories are short stories model appropriate social interaction. They are describing a situation with its social cues, other's perspectives, and what an appropriate response would be. It can be used to help correct an inappropriate behaviour but is often used to praise appropriate behaviours too. Reading through the story again at times when you think you might need to reminding about the is an easy trick.  With so much going on at Christmas, a quick read of Anthony's social story at the beginning or end of the day gives him a better chance of achieving it's goal over the festive holidays.

Tomorrow - more tips to help my kids talk at Christmas
Yesterday - Introduce and use appropriate (festive) vocabulary

Links
National Autistic Society - How to write social stories



Notes: Thanks for reading Baubley babbles, my notes on helping my family talk over Christmas. My sons are both on the autistic spectrum and we have a two year old daughter. Our son, David is five years old and uses a variety of Augmented and Alternative Communication (AAC) to talk. Every school day till school restarts I'll post a one thing I'll be keeping in mind to help us all communicate over the festive holidays. Maybe some things will be of interest to you too.

Tuesday, 22 December 2015

Baubley babbles: Introduce and use festive vocabulary

Our Baubley babbles are my notes on helping my family communicate over Christmas.

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Monday, 21 December 2015

Baubley babbles: Aim high with your communication

Welcome to our Baubley babbles, my notes on helping my family talk over Christmas. My sons are both on the autistic spectrum and we have a two year old daughter. Our son, David is five years old and uses a variety of Augmented and Alternative Communication (AAC) to talk. Every school day till school restarts I'll post a one thing I'll be keeping in mind to help us all communicate over the festive holidays. Maybe some things will be of interest to you too.

Today: Aiming High

An opening thought, aim high with your kids communication. My kids make progress at school and I'm not always aware of how much they can do. But I do know David can string several Makaton signs together and when he is using PECS, he is at working at stage 4 + attributes. I also know Anthony's speech targets includes responding in full sentences.

I'm not going to withhold fun at Christmas or expect targets to be hit at all in the midst of present opening. But during the normal parts of the day, I can encourage the boys to request/respond in full sentences as appropriate.  During breakfast it a good idea as its routine. 

Jane is lucky she's at the point of forming  full sentences so she gets constant good modelling too. 

Tomorrow - introducing festive vocabulary

Links
Communication Matters - What is PECS?



Friday, 18 December 2015

Favourite Fridays: Our melatonin mission - autism and sleep

Our eldest son, Anthony, was never a good sleeper.  He was diagnosed with ASD about three years old just shortly after we had our second son David. Anthony has problems going to sleep, but David's a whole other ball game. He can't stay asleep. He's up for several hours in the middle of the night nearly every night. Given that we still have to all function, get up, go to school etc, and after having exhausted all other avenues, we've turned to melatonin. Read more..

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

Too much in your inbox? You can get Favourite Fridays instead of our daily posts. Fill in the subscribe box (Opens in a new window and only works on our full version site).


Thursday, 17 December 2015

Finally, excited to see a Christmas show

Yesterday I was at my daughters Christmas show. I have three children and attend all the shows etc that I can, but this is the first time I've attended with nerves of excitement instead of nerves of anxiety or a feeling of indifference. 

It's because despite being only two and a half, Jane was by far the most interested and engaged in the Christmas show possibly because she's the only child without autism in the family. She's only been at nursery for two mornings a week for four weeks. But that hasn't stopped her being a full participant in the Nativity Play. 

Our little 'angel' did all the actions, quietly sang songs, enthusiastically clapped in all the right parts and identified afterwards that she was actually wearing a Cinderella dress but it was ok. She even filled in gaps during the songs which had no actions with a bit of Makaton sign language. Clever girl. As well as that she could actually re-tell the nativity story afterwards. 

There was no fear of clapping, loud noises or the need to make sure everyone else (including the technical staff) were doing their jobs right. There was no excessive fidgeting or lying down. And I knew this would be the case. It's not at all that I'm disappointed when I go to see the boys at their shows. Because they are both on the autistic spectrum, these events are more challenging.  

If you've read my other posts, you'll know that in some ways I'm more over joyed by the boys smaller achievements. Attending their events tend to come with different expectations, more weight and nerves. I guess I'm just lucky to be able to enjoy their achievements and glorious little Cinderella too.

Links



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Tuesday, 15 December 2015

Does Luke Skywalker have ADHD?

So, one of the weird things once you become a 'disorder' or 'condition' mummy is that you start spotting traits and signs everywhere. If you go to a playground and there's another kid there with similar traits to your kid, there's a secret glance with the other mum. Course it doesn't stop in the playground. Disney movies are a good place to start spotting traits and conditions.  Sci-fi and superhero shows are a goldmine too. And now I'm wondering if Luke Skywalker will be confirming my ADHD suspicions or not in the latest Star Wars: The Force Awakens that releases tomorrow.

Yes, I know, I'm more an ASD talker.  However, aside a few 'special interests' including technology (specifically building Droids and lightsabers) and of course 'The Force', I'm not one to look for symptoms that aren't there. Anakin was probably more akin to ASD or Aspie traits than Luke. 

ADHD or ADD on the other hand is a possibility. We're awaiting the outcome of an ADHD assessment. I'm not an expert but I do know that Luke ticks quite a few boxes. It's usually broken down into areas of being inattentive or lacking concentration/focus, being impulsive and being hyperactive. 

Yoda says, "I cannot teach him. The boy has no patience," and "All his life has he looked away... to the future, to the horizon. Never his mind on where he was. Hmm? What he was doing. Hmph. Adventure. Heh. Excitement. Heh. A Jedi craves not these things."  Yoda may not have the benefit of an ADHD diagnostic toolkit but he still managed to spot a few things. 

Luke disappears off on own quests on a whim I'd say that's impulsively just going off on missions. He charges into fights and places without thinking as if he can't stop himself. He looses focus even in the midst of a fight with his father and starts thinking about his sister instead which gets him into a whole heap of trouble. 

Ok, so I'm a symptom spotter. The good news is that Luke seemed to be coming up with some useful strategies to help himself. Medicating using The Force  seems to help his focus a bit and all that energetic fighting has no doubt helped his hyperactivity levels. 

He seemed most relaxed right after the massive fight at the end of the last film. Hallucinations with some ADHD medications are apparently not uncommon so perhaps that would explain seeing ghost Jedi then too. Ok, so that's maybe a bit of a stretch. One thing is for sure, "Enjoy the film I will. But look out for ADHD symptoms I also shall!"  I just can't help myself! What can you spot?

Watching our son stand for his Christmas concert

It's the time of year when my hubby goes in late to work due to the variety of Christmas related performances. 

Last weeks was Anthony's turn for the Yr 3 & Yr 4 'Christmas Sing-Up'. A wonderful 45 minutes of Christmas cheer squashed into a gym hall. With a mix of whole year, cast and class songs to enjoy!  As always it opens with a song from the whole 180 kids on stage. Except of course for our son. 

We know Anthony knows all the words, because he sings them in the car and in the bathroom, even sometimes in bed. But it's as if his mouth is glued shut. He must have been breathing through his nose in an effort to ensure not a sound escaped his lips. It's ironic really as Anthony actually has a lovely singing voice and carries a tune far better than a lot of the other kids there (honestly not just because I'm his mum either). Instead what actually happened was that my husband took three hours off work (by the time you add in commuting etc) in order to watch our son stand up and sit down with between 29 and 179 other kids. 

But wait, there was also some instrument playing. Anthony has music therapy so can actually play a bit of piano. And again the truth is he'd have been just as good if not better than the other kids... if he would play in front of an audience.  It's no surprise I suppose that he didn't want to perform at the music therapy concert either.  

It's something to do with the spectacle of it all.  Praise is difficult to receive, we can only clap quietly or give pillow claps (think air claps) when he does well.   We were at a lovely birthday party at the weekend, and as we sang happy birthday to the birthday boy, I knew Anthony would have been hiding away in a corner outside. It's just too much pressure and focus, even when it's for someone else! 

Still for a kid with ASD, Hypermobility, possible ADHD etc etc, he managed to sit, stand and do actions appropriately throughout his 'Sing-Up'. And whilst sometimes like in 'The hope I see in the kind acts of children' I'm overwhelmed by his ability to take part in class assemblies etc, my partner and I were happy enough to giggle at the fact that we'd managed to get a few hours otherwise kid free and off work just to watch our son stand up and sit down 14 times. 

Who knows, with another year of maturity, he might manage a whisper, but only if he can hide at the back and we promise not to say much afterwards. 

Links
Our blog - The hope I see in the kind acts of children (Anthony's class performances)

Monday, 14 December 2015

Gale winds and a low sun - is this what it is like for my autistic sons?

I got a precious few minutes this weekend to myself.  It had been a pretty miserable day.  The low sun had just broken through the clouds but the trees were still being blown around like bags in the wind.  Despite the roughish weather, our dog (yes we also have a dog), still needs walking so I gathered up the lead and left the kids in the safe hands of my other half. Although I'd left our 'autism' at home, I still managed to think about it on my walk with the dog.

It has been blustery of late and this afternoon proved to be no different. In fact it was gale like. As I walked into the local park area I was greeted by a blast of cold wind that took my breath away a bit. Obviously the dog didn't mind. Whilst I was acutely aware of the sound of air rushing past my ears, our beagle had such large lobes that I'm sure he was only interested in he scent being carried by the wind past his nose.

The sun was low in the sky and as I carried on it was reflected off the damp ground. I had to squint a bit to see and as then I noticed another dog walker coming towards me. I think they might have been saying something but I couldn't hear a thing with the howling wind in my ears and couldn't see their face either as it was in shadow and thanks to that bright low sun. 

I got to the tree line and as I rounded the corner I drifted into the long shade of the trees and breathed a sigh of relief and a sniffle as the wind abated thanks to the shelter there. I continued in our little loop if the park and met another walker, "Hello again," they said. 

Of course I realised this was the same dog walker I'd seen just a short while ago.  This time though, I could see them, hear them and happily replied 'hello,' back. I guessed they hadn't thought me ignorant before when I'd simply squinted at them and said nothing. After all I couldn't help that I couldn't hear them or see them, I had been trying to.

And that's a bit like what it is like for my autistic sons. It takes far less than a gale like wind and a blinding light to create a sensory overload in our boys.  And when this or any other type of overload happens they literally can't see or hear what's happening around them.   What's supposed to be a simple, friendly 'hello' is a mass of confusion.

Both boys are pretty good now at saying hello when they go somewhere but I knew as I came back to our house that's always in the midst of an activity that I'd have the remind at least one of them to say 'hi' to me when I came back.  And I  figured this was ok, and was pretty happy that they were willing to do that for me.

Links
Our blog - Final straw on a pile of worries
Our blog - Racing clouds - David's delight

External links
NAS - Sensory


Thursday, 10 December 2015

A lead pipe, a ball and a pair of feet - our swimming sensations?

Last night was a real treat for me. I don't usually accompany Anthony to his swimming lessons, I'm usually the stay at home with the others kids parent.  We knew that Anthony would need individual lessons and that his autism, dyspraxia and sensory processing would need a sensitive touch.  It took two years to get someone, but Anthony has now been going to lessons for six months and his progress is so encouraging.

Going swimming as a family was always a bit of a mission. Once the drama of actually getting ready for the pool was over, it became a game of keeping them all safe. 

Anthony's younger brother, David, is nearly five years old and has ASD and hypermobility. Part of this means he is both very flexible and loves the feeling if touch. In the water he has on a float vest and little water wings. He then folds his legs so his feet are against his chest and hugs himself. Yep, without assistance David is basically a ball floating away in the water.   

Their little sister Jane is as inquisative as any two year old and spends a good deal of time lifting her feet out of the water, to the joyous exclamation of "feet!"

Then there was Anthony. He's quite temperature sensitive, his dyspraxia means he needs motor skills broken down into small steps, and can find it difficult to focus in busy or loud places. When you put him in the water he'd go rigid, but instead of floating like stick he'd just sink like a lead pipe. Worst of all, he would be absolutely still, meaning he would make zero effort to get back above the water. Combine this with not being able to tolerate water on his face and swimming for Anthony was really just paddling up to his waist in the learner pool. 

His transformation over the last six months has been amazing. Don't get me wrong, he's no Olympic freestyler, but he is developing a style of his own. It took weeks of pouring jugs of water over his head in the bath and then all of a sudden he was fine with water on his face. He still sinks like a lead pipe if he doesn't move but today he managed four lengths on his back and a very messy width on his front. He still needed a teacher helping him sequence his movements a bit by saying arms or legs at the right times. 

Neither his lengths nor his width could be described as anything close to graceful.  And neither compared to the real surprise from his lessons. For the boy who didn't like getting his face wet is most comfortable and joyful when swimming under the water. He now couldn't be more unlike a stick, constantly moving about and storming through water to collect sinkers and just to get from A to B. It's just a delight to see.

His swimming teacher has told us that without constant supervision he'd still end up under the water, but he's made such progress. At least if he fell in the water somewhere he's now got a chance of survival. And that's pretty good.

Links
Our blog - Hyper-what else?

External Links
NAS - Sensory

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Wednesday, 9 December 2015

Our melatonin mission - autism and sleep


Our eldest son, Anthony, was never a good sleeper.  He was diagnosed with ASD about three years old just shortly after we had our second son David. Anthony has problems going to sleep, but David's a whole other ball game. He can't stay asleep. He's up for several hours in the middle of the night nearly every night. 

Tuesday, 8 December 2015

Always the same Christmas Tree because they all the same?

Yes, we have finally put up the Christmas Tree. The whole build up to Christmas can be a bit stressful in our home. It brings with it a lot of change of routine and unexpected events which can be difficult for our autistic sons. With Anthony's recent 'All the trees are dead' comment I had expected to have an interesting 'evergreen' conversation with him when we put up the Christmas tree. However it didn't go as I had expected.

Anthony has been pointing out the 'dead' trees on the way to school for the last month. In the last week or so we've also noted some if the evergreen plants and trees on the journey too. Anthony and I have discussed how they didn't have regular leaves and were special in a different way. Please don't get me going on a Christmas tree - autism analogy just yet. 

The evergreen conversation seemed to go down well until we discussed our own Christmas tree. It's the same one we've had for years. It seems logical to stick with the same tree if you have kids who shy away from change. Even with using the same decorations, our younger son with ASD still has a hyper couple of days after the lounge is made over for Christmas. 

We've also never had a real tree since having the boys for fear of them hurting themselves mostly. It was a real eating hazard with the needles, David in particular is very orally stimulated and was mouthing until he was nearly four years old. 

It was discussing the weather, the trees and the evergreens on the way to school the other day that Anthony explained that he had known already about evergreen trees. "They aren't dead like the other trees because they are pretend trees to start with."

Anthony assumed that every single fir tree, evergreen and holly bush was fake like the ones we had at home. He was absolutely certain of it. After all it made perfect sense given the 'normal' trees lost their leaves in autumn. It was only upon inspection of a few evergreens that he started to listen to me about only some Christmas trees being fake. 

In a way it's strange, I don't think he thinks we have real star or real snow flakes on the tree and he knows these are different in real life. Perhaps it comes down to having been introduced to a 'fake' Christmas tree before a real one. He could be over generalising, a common difficulty in some people with autism, where he thinks all evergreens are fake like our one. It's almost as if he thought real Christmas trees didn't exist. 

So his education continued today, pointing out 'real' evergreens on the way to school. Goodness knows what questions spring will bring in the new year! 

Links
Our blog - All the tree are dead
Our blog - Generalising dog, autism and language 


Monday, 7 December 2015

Anthony's first experience of guilt

If you have read 'Our terribly truthful child' you will know that Anthony is a seven year old boy with autism who has never told a lie, ever. But, that doesn't mean he has never done anything wrong.  And as of last week, it doesn't mean that he's never felt guilty either. 

One of Anthony's special interests, which is nearing an obsession at the moment, is playing a app game called Marvel Champions. Special interests are very common with autism. As Ambitious About Autism say, 'people with autism tend to be more all-or-nothing than most people: something is either absolutely not interesting or absolutely fascinating.' An obsession is a special interest taking over your life or your ability to function due to an inability to stop thinking about or doing your obsession. 

Marvel Champions is just on this border at the moment and it was this game that led to Anthony's first experience of guilt.  Usually Anthony only plays the game when his father is home. This allows some control for us. Sometimes Anthony's father can't be at home because of work or something else and then Anthony is allowed to play the game with certain restrictions. One of these restrictions is that Anthony is not allowed to spend the game tokens without asking his dad. So, if his dad isn't there then Anthony has to wait. 

Last week this proved to difficult and when asked to come down the stairs for dinner Anthony burst into tears. It took me a while to work out that Anthony wasn't crying because he'd accidentally spent his game tokens. He was upset because he was having difficulty reconciling the fact that he had chosen to spend the game tokens despite knowing he shouldn't. 

My son cried for nearly an hour. Then had his swimming lesson and then started crying again. At one point I thought we weren't going to get him to stop crying in order to get into the pool. His whole concern was about how sad and disappointed his dad was going to be. 

It's interesting that Anthony would get so upset by this. He barely blinks when he does some other things that 'disappoint' us like for example hurting his sister, or not trying to do homework. I think it's the first time he's really felt guilty about something. 

I'd tried several strategies and then finally told Anthony a story from when I was a little girl and did something similar and how I felt about the fact that it had upset my parents. Anthony was mesmerised. It culminated in a phone call to my own father to get him to re-tell the story again and explain how my own father had  felt about my 'crime'. 

In many ways I think this shows Anthony maturing. He has always struggled with interpreting his own and others feelings. My heart when out to him. Feeling guilty is awful, but in some way I'm pleased that he's been able to achieve this milestone and that I was allowed to work through it with him. 

Links
Our Blog - Our terribly truthful child
Our Blog - Autism and the misunderstandings of empathy

External links
Ambitious About Autism - Obsessions and Special Interests

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Friday, 4 December 2015

Favourite Friday: Potato passer and crumble creator 23 Nov 2015

We don't often do roast Sunday dinners in our house. We used to do them a lot but then there was a period of time when it just became too difficult. Not only were the kids not taking part in the dinner but they required constant assistance to stay off of one another, entertained or safe. There was almost a shift system and someone was always away from the table. Recently though whatever combination of child development stages led to this 'no Sunday roast zone' we had entered seemed to pass. And to my absolute delight our autistic five year old was actively interested in the return of our Sunday dinner preparations. Read more...

We've introduced 'Favourite Fridays'. Each Friday 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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Favourite Friday: Why sharing gingerbread 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. 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 gingerbread man to his little sister the other day.  Read more

We've introduced 'Favourite Fridays'. Each Friday 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, 3 December 2015

Art Neuro?

It's been well over six months since I raised the question with our various health professionals. We know our son Anthony has autism but does he also have Attention Deficit Hyperactivity Disorder (ADHD)? So how come it was only today I came across the term neuro-disability.

Anthony has been diagnosed with autism, or autistic spectrum disorder (ASD), since he was three years old.  This confirmed his difficulties in lots of areas such as language, social interaction and also sensory processing.  Both Anthony and his younger brother are sensory seekers and demonstrate sensory seeking behaviours.  They move their bodies an effort to 'feel' right.  Constant spinning, flapping, and in Anthony's case jumping to settle their sensory system. 

At school Anthony leaves his classroom several times a day for movement breaks and as he has grown I've wondered whether his constant moving and lack of interaction could partly be due to also having ADHD.  Many kids with ASD  have comorbid conditions, one's that are likely to co-occur and having both ASD and ADHD is quite common indeed.  Practically if this meant Anthony should be getting different support to help him function at school then I knew I should seek further advice and a diagnosis if needed.

Our appointment with the Neuro Development team was today and could be described as dull at best.  I spent an hour answering the many questions that I've answered before and Anthony sat, tapping, tutting and eventually ended up on the floor. Despite me trying to involve him the conversation, the consultant hardly ever asked Anthony a question about himself.  Anthony was paying absolutely no attention anyway, yet another pointer to his potential ADHD. 

At the end of the appointment the neuro consultant talked a bit about 'neuro stimulus' and Anthony's obvious hyperactivity and said he'd be in touch again in a few days after talking to Anthony's school.  We started on our one hour journey home and after 15 minutes went back past a grand building called the Royal Hospital for Neuro Disability.  It suddenly occurred to me - have our kids had neuro-disabilities this whole time and I've never realised it? 

I don't know why but it doesn't feel like this is the right term to describe them.  NHS England defines Neurodisability is an umbrella term for conditions associated with impairment involving the nervous system.  The basic element of the nervous system is the nerve cell, or neuron.  There are billions of neurons in the brain and this along with the spinal cord forms the two main structures of the nervous system.

NHS England goes on to say that this includes conditions such as cerebral palsy, autism and epilepsy.  Other organisations seem to list different conditions.  I've not been able to find a definite list, but NHS England would say our son's have neuro-disabilities. I've always described Jane their younger sister as neuro-typical and  I've always been happy to describe my boys as having a disability but it seems weird somehow to say they have a 'brain' disability. Clinically, I guess it's true, their brains function differently. 

Obviously I'm not a neuro expert and I think I'll probably not be able to stop myself investigating this more. Most recently I came across the term neurodiversity from Steve Silberman's book 'Neurotribes'. Neurodiversity is an approach to learning and disability that suggests that diverse neurological conditions appear as a result of normal variations in the human genome and presents the idea that neurological differences should be recognised and respected as a social category on a par with gender, ethnicity and sexual orientation. Perhaps it is because I heard the term neurodiversity first that I find neuro-disability strange.  

Whether officially my boys are neuro-disabled or neuro-diverse, I guess all that matters is that my son's get the support they need.  That they are given the opportunity to reach their full potential and to lead their lives in the way they wish.  And so I'll wait to hear from the neuro development team as to whether Anthony needs an ADHD diagnosis and what we can do to continue to support him.  

Links
Our Blog - Hyper what else? (Co-morbid conditions)

External Links
NAS - Sensory
Neurotribes - Steve Silberman's website


Colourful brain representing neurodiversity or neurodisability







Wednesday, 2 December 2015

All the trees are dead - autism, facts and absolutes?

Yesterday was the 1st of December, and according to Anthony, who has autism, this meant it was now definitely 'Winter', he had to open a chocolate advent calendar and all the trees were dead.

We were lucky to have an advent calendar as Anthony hadn't mentioned it at all before yesterday and only sort of got the concept last year.  We've talked about the season's before and I'm pretty sure we agreed that December was a 'winter' month so this was a relatively normal comment.  And if you had been in the car with Anthony on the way to school for the last month then the tree comment wouldn't surprise you either.

For the last month or so, Anthony has spent several journey's to school pointing out all the trees that are loosing their leaves.  Then yesterday he proclaimed that leaves fall off the trees in autumn and as December is a winter month they should now all be off and so all the trees are now dead.  Throughout the last month we have talked about the fact that it is more like the trees are going to sleep, but Anthony rejected this.   To him the tree doesn't look any different in winter to when it looks when it is dead.  Instead he thinks about it coming back to life in the spring.

Perhaps this is because Anthony tends to deal in absolutes. When he has asked us what happens when things or people die we can only tell him what we and some people 'believe'. And this is really hard maybe for any child to understand.   He can't understand why we don't know what happens when we die. I've been asked to look it up on the internet, or ask someone who knows. It's too hard a concept to explain that apart from the obvious at Christmas time, I can't physically talk to anyone who has died to ask them what happened and what it is like.

It may be related to the difficulties some autistic people have with Theory of Mind, it could be difficult to attach feeling to something that isn't physically present. 'Theory of mind' is being able to attribute 'mental states' such as beliefs, desires, pretending, knowledge, etc. to oneself and others and to understand that others have beliefs, desires, intentions, and perspectives that are different from one's own.  Anthony for example has a unique application of empathy in this post because he finds understanding others difficult. In this case of understanding about what happens when something dies, it's more about the mental state of belief for Anthony that's challenging.

At the moment, Anthony does not actually 'believe' but simply take as facts what he is taught at school and what we tell him about Christmas and Easter. Given this, he has then simply generalised the concept to the trees, which die and then come back to life again. In a way it's sort of wonderful.

I have no doubt that over the next few days, several trees will be told off by Anthony for still having leaves and not dying on time. And we will have to finish the discussion on evergreen plants.  At least this should lead nicely into putting up the Christmas tree at the weekend.

Links
Our Blog - Theory of Mind, double rainbow and breakfast
Our Blog - Generalising dog, autism and language




Tuesday, 1 December 2015

Jane loves her autistic brothers

Jane is two and a half years old. Despite her young age she has already accomplished many more things than her older brothers.  This is because as yet, Jane is the only child in the family not facing the difficulties associated with a diagnosis of autism.   She's developing in a more neuro-typical way, talking in near sentences, enjoying social interaction and to my absolute joy, declaring love for her siblings.

Jane's eldest brother Anthony is seven and if you ask him if he loves his family he will tell you that of course he does. David is five years old and can tell you if he wants something, but not really if he either likes it or loves it. He is more likely to ask for a biscuit than his mother. This doesn't mean that the boys don't play with their younger sister. On the contrary, Jane being younger makes things easier for them.  Jane is able to be directed in play.  She will follow instructions and suggestions for play.  She's also up for anything fun like running around, wrestling and hiding. And she does it with an absolute joy than is infectious even to the boys. 

Don't get me wrong, playing with the boys can be challenging.  Both have sensory difficulties meaning than can be very physical in play. David can be fairly rough and his play repertoire is mostly adaptions of chase.  Anthony can be very demanding, games have to be played as he dictates and sometimes Jane has to put up with a fair amount of shouting when the simple rules aren't followed appropriately.  This is because Anthony enjoys repetition as it means he doesn't have to deal with the unexpected.  They were both diagnosed with ASD within a year when they were around three and four years old has meant we understand them better and are able to help them all play together.  Both boys also need their space too and it's not uncommon for poor Jane to be told 'I don't want to play with you right now.'

Jane had been told such a thing when I went to comfort her yesterday.  I asked her if she was sad because she liked playing with her brothers.  "Yes, I sad. I like playing with my brothers. I love them," she said.  Admittedly, she seems to 'love' everything at the moment. But despite this it was still one of those many times you have as a parent when you know you should have a sad face to show you empathise with your child but you've actually got a smile.  For despite her brother's behaviour being a bit odd, rough and sometimes seemingly mean, she still loves them, even at two and half years old.  I know she may find her brothers difficult to understand as she and they get older but I'll take a bit of love between them all right now. 

Links
Our blog - Normal Repetitive play, watching Jane's development
Our blog - Anthony's always aloud

External links
NAS - Sensory
NAS - Obsessions, routines and repetition

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