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What’s the time Mr Wolf?

This week we’ve been trying to teach the concept of time. A tricky concept at best but Dylans ABA consultant has a handle on it!

We’ve brought Dylan a watch. Not digital but with hands. Specification was with a large face, clear of pictures or decoration. Oh and no second hand.

We found a watch. It has a second hand but otherwise meeting spec. Now to see if Dylan will tolerate wearing it.

Right. It’s on 🙂

Dylan had a programme learning the time about a year ago which has been maintained and reviewed since it was originally taught. It was pictures of clock faces and the written words for ‘o’clock’ ‘quarter-past’ ‘half past’ and ‘quarter to’ for Dylan to match to the clock faces. Dylan found this difficult as a matching programme so we took the steps back further by using a real clock with no batteries so that Dylan could see the hands moving to make the different hand positions more obvious. This was also difficult so we stripped the skill back even further by removing the second hand and just having the hour and minute hand. Totally distraction free. Only then was Dylan able to report the correct time on the clock face. From there we built onto the skill, layer by layer. Slowly replacing the second hand and giving more choice options for Dylan to answer from. The ehole porcrss from initially introducing the paper clock faces to mastering the 4 time matches took about 7 months in total.

But this is different. This is the concept of time.

Dylans day typically appears to run from mealtime to mealtime. Once he has eaten his breakfast he is asking for lunch.

Dylan requires reassuring countless times throughout the morning about what he will have for his lunch. Then (at lunchtime) he finally eats his lunch before he is then bang on it planning his dinner and so on. This appears to be Dylans current model of time. So to open up Dylans concept of time to a less anxious routine we are throughout the week- every hour through the waking day, approx 7am through to 6pm, having an alarm going  off every hour on the hour and we ask Dylan

‘What time is it? What are you doing?’

Dylan then verbally approximates the time (which is difficult but not impossible to understand) and then with his Ipad he selects an activity or statement for what he is currently doing. Dylan then copies the text from the Ipad to a purpose made paper schedule for him to record his day. The idea is that he develops awareness of sections of time in the day.

Here are a selection of his diary sheets.

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It’s an interesting programme and Dylan is certainly developing the habit of checking the time when prompted. However, for us it’s a long day when you’re governed every hour by an alarm.

And Dylan still asks for lunch at 9.30am

Still, it’s work in progress 🙂

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Pizza

Dylans just ordered his own lunch. He has an osper card which is like a prepayment card for youngsters. Dylan doesn’t spend his money often and so the £5 a week we load on there has grown to a whopping 45 quid.

He was asking for pizza for lunch so I thought; you want it, you get it.

We used the online ordering facility and it was good practice for him to go over and over the postcode and other required details and although he enjoyed picking the pizza and sides (which were actually totally different to what we usually order, so that will be interesting!) He found the rest of the process tiresome.

Dylan entered his address details which is something we’ve been practicing as part of the life skills programme and his payment card details. I kept on reassuring him he was doing fine and he needed a lot of reminding to slow down as his rushing meant he was skipping sections and mistyping and that would have left the whole thing a mess. It was only once we had completed and checked out that I realised the whole process had taken over 40 minutes! He did it though and was motivated at points. It was lovely to see him so proud when he opened the door and all his food that he had asked for arrived.


I can see this becoming a regular event! 🙂

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Forever In Combat

​**please excuse the potty mouth**

Autism Moms Have Stress Similar To Combat Soldiers

https://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/
This is crap. Parenthood is stressful. Kids are stressful. Does Dylan cause me stress?  Does his Autism cause me stress?  No. The shitty care system causes me stress, sub-standard good for nothing education causes me stress, shoddy therapists cause me stress. That’s the only comparison to combat in my life- the frigging system. Jeez.
This was my Facebook post 1 year ago. 

Every year June through to August is statement review time.

It sucks. It’s a time when you have to argue how bad everything is all the time to people who judge if you are justified to access resources based on how bad your circumstances are. Resources I may add that the assessors provide. So if your needs outweigh the resources available then that particular need is overlooked. Its not assessed.  Not discussed. And you get: No help. 

Now I work in health care. Hence the comparison.  Now if I have a patient who has cancer and they present in chemo suite with a broken leg it would not be acceptable to send them on their way without acknowledging the leg.  

‘You have cancer. We will treat the cancer but not the leg. The leg isn’t as important as the cancer. And especially if the leg break is anything you do with the cancer then it must be seen as a byproduct of the cancer. Either way. Have your chemo or go home.’

Can you imagine the uproar? You would ask to see another Doctor.  Go to another hospital and ask for a second opinion. You almost certainly would have your leg treated elsewhere with a big fat apology for the first departments negligence and lack of care.

Now I hate comparing anything like this with cancer but its a scenario that most cam understand and relate to. 

There is no apology. Not with education. There is no other department. No other professional. No second opinion.  If your leg/need/disability can’t/won’t  be treated/acknowleged/met then that’s it. Tough.

And that’s where the combat starts.

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Stims and Nasal Douching

Yep.

Sick of the snorting, throat hacking, grolly producing sniffing that dominates day and night.

Prior to the snorting Dylan has had other stimmy behaviours which are less than desirable.  

Dylan is a highly sensory seeking child and has been through various stages of high pitched rhythmic screetching and sensory saliva smearing on everything! By using a variety of distractions and ABA redirection techniques we have minimised the disruptive or unhygienic behaviours and replaced them with more manageable variants. 

Now we have the snorting.

I had suspected for months now that the nasal snorting it is a nervous tic as well as a self stimulatory behaviour. Its something which definitely worsens in quiet public situations you certainly don’t want to draw attention. You know the ones; in libraries, school presentation assemblies, the quiet important bits of wedding ceremonies. 

But then it occurred to me, maybe it’s not comfortable? Maybe he feels congested. Do what do you do?  

YOU GOOGLE!!

Well when Googling I stumbled across nasal douching or ‘saline sniffing’. Basically it pouring,  dripping or snorting salt water up your nose and then blowing it all out along with whatever is up there. I checked the evidence base and couldn’t find any contraindications or injuries reported. Apparently non-infective rhinitis is recognised as improving with regular douching soooo… we gave it a go. 

I’m not squeamish but I cannot bear water up my nose so I sat out of this one and Dylans Dad kindly gave the demo and modelled to Dylan what he needed to do. Dylan was like a pro and picked up the syringe of warm salty water and whooshed it up his nose. He even made the ‘ahhh’ sound so as he didn’t swallow any. 

He’s been doing this now a couple of times a day for a few days and there’s a definite improvement. Still snorting but not as violently and certainly not as frequently as before. 

Would be lovely if this made Dylan comfortable and not needing to snort anymore. For him and for us.

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Birthdays

Dylan will turn 13 this month. Every year he gets harder to buy for.  He has never shown any interest in birthdays. He often won’t open any presents and although he enjoys eating cake the candles burning brightly on the top will often make him anxious, resulting in him grabbing at his ears and holding them tight until the cake is taken away. He doesn’t yet register that if he blows them then they will expire. He is gripped by pure panic. 

So needless to say that July with three birthdays in the house in it can be stressful for him at best.

Yesterday was both Joshs and my birthdays; and Dylan was okay. He has learnt to write his name in the cards and with a bit of support was able to insert the card into the envelope before sealing it. Yesterday he sat with the cakes and watched- albeit guarded- the candles be lit and be blown out. Dylan managed well with the excess wrapping paper and change to routine and having boxes and mess about the place and being late for everything due to Josh wanting to bring all his new bits everywhere. He coped.

Later on it, about 10pm when all the children had settled down, the little ones asleep and Dylan just sitting in his bed in the cool darkness of his bedroom gently humming to himself. I glanced in on him to see him sitting quietly gently flicking the chewed up old straw that he’s been carrying around the last few days. The only item that he’s reslly shown any recreational interest in. 

‘Nice day Dylan?’

‘And what would you like for your birthday?’ I gently whisper to him. 

He looks up a me softly but blankly before getting back to concentrating on his dishevelled plastic drinking straw. 

Me: ‘No; I have no idea either!’

I was hoping with the emerging communication on the Ipad that we might gain a bit of insight into what Dylan would like about his birthday or for him to be able to express what he doesn’t like even – so we can make his birthday as bearable as possible for him. But so far we have learnt little about this.

We will keep trying. There’s still time! 🙂

July 2015, age 12

 

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Hal

Dylan has a 4 legged friend. Today 5 years ago I came home after being away on a week long training course and brought home with me Dylan’s assistance dog Hal.


I first became aware of autism assistance dogs through the good old internet. Research showed me they were very popular in the US and increasingly popular in Ireland where both locations had charities and popular organisations surrounding assistance dogs for autism. In the UK there were only 2 charities helping families find these special animals. One was up north and we were out of the catchment area. The second ‘Dogs for the Disabled’ as they were then known were closer and had a self referral system.

The application process was straightforward although there was an exclusion criteria which was quite tight; only one child in the house with autism, no other dogs, age restrictions etc. We thankfully met the criteria and were accepted on the waiting list to be matched with an appropriate therapy animal. It took years! However one day out of the blue we were contacted by the wonderful staff at the charity who confirmed they had a match for us and could we meet? Arghhh! We were so excited!! Of course we’ll meet!

Like some doggy blind date we waited anxiously for the charity workers to arrive with our match for the initial meet. Well, he was worth the wait. Still just a pup really Hal was 18 months old but big strong and lean. His nature shines as the most patient and gentle dog and when in his working jacket he is masterful and controlled. The meet went well and I was quickly booked in for a residential date with him and two other families and their matched dogs to receive handover on the training and upkeep of Hal once he comes home with us.

The residential week was the hardest ever. It was a 2 hour drive away and the first time I had been away from the children overnight since my dad died 3 years previously. I was so homesick but Hal got me through it and after 5 days I finally came home bringing Hal with me.

Hal is the sweetest, kindest dog.  For Dylan, who is often sensory seeking, Hal will tolerate his pushing and rough handling until he has had enough and the he will remove himself from Dylan’s reach. When out walking, Dylan will hold his lead and Hal will stop at the road when Dylan will not; forcing Dylan to remain at kerbside and not shifting an inch until instructed to otherwise. Dylan quickly learnt that even if he wanted to turn left to go to the park if Hal was turning right to the shop then right we would turn. Unlike when we would explain to Dylan our undesirable destination there would often be aggression, frustration and anger. We found Dylan would follow Hals direction- with confusion initially but- without resistance. Dylan quickly learnt to trust Hal and would easily follow his lead.


For both Josh and Grace Hal is a positive presence in what can often be a difficult home life. Without the working jacket on Hal is a playful energetic dog with emotional insight and intuitive compassion. Often offering a wet nose or head rest to provide comfort to all siblings when they are quiet or upset. He will sit and wait patiently for his breakfast while everyone rushes around feeding themselves or getting ready for school or work.  He is like the kindest friendliest most supportive person you could imagine but in dog form. And we love him.

Happy 5 year homecoming Hal xxx

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Social stories in action

Social stories are largely recommended by professionals to explain situations or repercussions to people with Autism who may be upset or unable to cope with a change to routine or plan.

At TeamDylan we’ve never been a fan of the idea of social stories and Dylan has always seemed to understand that there are frequent changes to plans in real life. He maybe unhappy with that but that’s just life right?  Anyway to try and keep things as calm as possible while on holiday I made a social story about swimming. Dylan is nervous of the pool at the beginning but once in it he loves it and often struggles with the idea of the pool being there but not always being allowed in it, especially right after eating.

To do this we used Pictello; an app which you can add photos,  voices and text which can suit the story you are making. This story took about 4 minutes to put together. 

And here it is 🙂

https://m.facebook.com/With-a-hop-skip-and-a-jump-1056106674469666/?ref=bookmarks