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Ha-ha-happy Halloween!

Halloween. 

Not one of Dylans favourite celebrations probably due to the lack of preparation. The decorations go up that day and come down the same day. The costumes are uncomfortable and with it being a school/work day its usually all a bit rushed. 

The golden rules are broken and suddenly everyones out knocking on doors and taking sweets from strangers. 

I can see that it must appear bizarre and very unsettling.

So this year we did things a bit low key. Dylan wanted to dress up like the other two but instead of going out we drove them round to my mums for a hot chocolate and a handful of mini chocolates each.


And for the last day in October, and the final day of AAC awareness month, we set it up so that Dylan could treat us to some Halloween jokes.

Happy Halloween all 🙂

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The Amazing Miss E

Once a month we have Dylan’s speech therapist come to visit. On a Sunday,  this amazing lady leaves her family to come to spend an hour with Dylan to work with his speech.

Miss E has been seeing Dylan for over 2 years now. We found her through the recommendation of Dylans ABA consultant. Being primarily non verbal Dylan has had speech therapy through  state services since he was 2 years old.

Generally Dylans speech therapy targets have built around the communication development pyramid of which further details can be found here.

The Communication Development Pyramid

Taken from http://ladybughouse.com.au

The methodology for this is that before you can move through the pyramid you need to fulfill the lower level to progress up to the next developmental stage.

It is a well known fact that eye contact and imaginative play in its typical sense  is not a trait which comes naturally to those placed on the autism spectrum. Sadly due to this Dylan’s typical speech therapists could see no worth in attempting to develop Dylans speech  sounds as he had not yet met their  critera for moving forward.

After 7,  yes thats right 7,  years of traditional speech therapy we became tired of the repeated tasks of posting items into trays and other therapist-selected activites designed to prove Dylans ability/inability to progress. We finally decided to seek further assistance. It was suggested that we seek the advice of an alternative privately funded speech therapist.

When I initially rang Miss E to ask for help I remember spewing out this rant of frustration and disappointment at how Dylan was being let down by the system. My feelings of anger that he was deemed as not being worthy of attempts to help him communicate were based on a system which valued his communication attempts without considering his disability. Thankfully Miss E didn’t run for the hills at having this mad woman on the end of the phone, she reassured me and we scheduled a home visit in the coming couple of weeks.

Thank goodness she did! Her assessments were thorough and longwinded and often conducted over a couple of months to build a true picture of Dylans ability. 

Since that point Miss E has been a source of support, an absolute fountain of knowledge and a really positive presence in our lives for the last two years. 

It was Miss E who agreed to work with us on Dylans speech sounds and introduced  us to the Nuffield  Programme for Dyspraxia to help Dylan with his articulation. 

It was Miss E who suggested Dylan be formally assessed and had the real idea that maybe ‘Dylan cannot make words’ be put into the mix. Until this point we had literally been told by every other speech professional that:

‘Dylan won’t speak to you. He’s autistic, he doesn’t want to speak to you. He doesn’t see the point. It’s part of the autism’.

Absolutely heartbreaking to hear as a parent. I cannot imagine how Dylan  feels as he was often within earshot of these comments at the time. 

Now Miss E was presenting us with the idea that this isn’t just autism, there’s something else going on and Dad and I would have to manage the idea that our darling boy would have another difficulty to deal with. 

‘He has signs of verbal dyspraxia.’

To have that insight, that level of understanding and that professional   integrity is admirable. 

I trust Miss E with her judgements and advice regarding how best to help Dylan. 

With her support we are well informed that Dylan will probably need a degree of speech therapy for the rest of his life. 

Miss E has shown us triggers for when Dylans speech and articulation are particularly trying for him and has devised coping strategies for him (and us) to manage these. 

Miss E advises us where she can with the Ipad –  although this is not her speciality – and lets us know if she is unsure of something. 

Miss E has the professional confidence to share the boundaries of her expertise and promotes the ethos of Dylans wellbeing at the core of her work with him.

This week Dylan started off the session trying  to work but was very jerky and twitchy. Miss E noticed and acknowledged the tics with both Dylan and myself. She then gave him time to settle himself down so that he would be able to provide his best efforts to the tasks in hand.

It worked. Dylan worked successfully and beaned with pride at some of his speech accomplishments this week. 

And that’s how therapy should be. 

Thank you Miss E 

Xxx 

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100 followers!

Wowzers! I started writing as a bit of therapy and as a personal log of Dylans progress back in May.

Five months later this has been the most productive and supportive experience. 

Thank you for reading, commenting, sharing and joining us.

As things develop I will be posting videos of Dylans progress and activities over on his Facebook page however the bulk of my writing will remain here; where it all started 🙂

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Fffap Update 

After hours of guess work. 

Constantly attempting to get to the cause using varying methods of pen and paper, using a keyboard and even requesting Dylan take us out and show us what on earth ‘ffap’ is. 

We guessed it! Pure and simple. 

‘Ffap’ is ‘shop’!
Dylan has now been shown the location of the button for ‘shop’ on the iPad.

Drama over 🙂

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‘Fffap’

Dylans new dialogue.

Dylan: ‘Mum,  I wan munee bee’

Me: ‘You want money?” 

Dylan: “Yah bee ‘ 

Me: ‘What do you want money for?”

Dylan: ‘Wapah’ 

Me: ‘One pound?

Dylan: “Yah be’

Me: ‘What do you want to do with your one pound? What do you want to buy?”

Dylan: “Ffap”

Me: “Ffap?…(pause)  I don’t understand Dylan. I’m sorry”

Dylan: “Ipad.”

Then Dylan gets his Ipad and hovers over all the pages. He opens up the icon which allows the creation of another button but then pauses over the keyboard; unsure of the letters he needs to decode the mystery surrounding “Ffap.”

We’ve been through this routine countless times over and over again in the last few days.

The repetition is getting wearing but for Dylan he want to get his ‘ffap’. I just wish we knew what it was!


I love the fact that he is now independently reaching for the Ipad to support his communication. And he’s talking! Really talking! 
Although unclear, the drive to communicate has arrived and I’m absolutely thrilled about it. There’s a definite improvement in his vocalisations since he is practising more. I’m aware his speech may not ever be clear to others outside of the family home but he is certainly trying! Thank goodness!

But ‘ffap’ has got us for the moment

 It won’t be forever but for now its a stumbling block. 

But we’ll get it, any ideas? 🙂

3

Making sense of Sensory Processing Disorders

Sensory processing issues impact on all aspects of Dylans day. In fact it’s often difficult to tell where autism stops and the sensory processing element of him begins.

Growing up with sensory processing difficulties you tend to find a range of coping or avoidance strategies to be able to get by. The image above labels a lot of the characteristics of SPD (sensory proxessong discorder). It’s strange how only when seeing it like this in black and white can you appreciate just how huge these difficulties are in everyday life.

Hair.

Dylan will now wash his hair but won’t ever brush it. 

We had many tears for many years with haircuts at home. Only with the help of an ABA programme for hair cutting we gradually helped Dylan become desensitised to scissors or clippers near his hair. It took many months but Dylan is now thankfully able to attend a public barbers for his hair to be cut. He still whines and wimpers; it is clearly very uncomfortable for him. But he is confident that the discomfort is shortlived and he appears to feel better when his hair is shorter.

Shield eyes from bright light or stare at bright lights .

Dylan won’t set foot in the bathroom with the light on. He requests ‘off’ before he has his turn in the bath. We have downlights in the bathroom and yes it’s bright but it clearly affects Dylan to the poinnt where he can’t go in the room until the lights are off.

On the flip side of this, when much younger he would walk up to the tv and press his nose on the screen staring absolutely fixated by the bright lights from the images on the screen. Thankfully this has settled now. Before I knew of or understood SPD I was so worried about how he was damaging his sight.

Oversensitive to loud sounds.

  • Hand dryers in public toilets.
  • Motorbikes revving
  • Buses stopping

These sounds all send Dylan over the edge. He becomes incredibly anxious and clingy with these noises. We have started to use ear defenders to reduce Dylans anxiety with these noises. He won’t independently use the defenders but if we see he is unsettled we suggest them and he’ll get them out of his bag and put them on. They seem to help.

  • Babies crying
  • Christmas singing decorations

These sounds over excite Dylan. A baby crying will make Dylan laugh and cackle until he has tears streaming. Again this may be a stress response but it is decidedly different from the more fearful responses to other sounds.

Chew on different materials and textiles

Dylan will often chew on his bedding or towels when settling. He will shred them into threads which then get balled up in a big spitty mess that has posed a big choking risk in the past. We try and avoid this as much as possible.

Dylan isn’t often seen without a selection of drinking straws. He had a heirarchy of straw standards and will dump one of when he had the option of a new, unchewed one. This is his biggest pacifier for him at the moment. From the minute he wakes to him going to sleep he needs to know where his straws are. 

They’re his favourite toy.

Poor fine motor skills 

Cutting and buttons both had a designated ABA programme to teach them as functional skills. Handwriting is improving but still very large and messy and requires ongoing prompting and support with pen control. 

Only practice I think will develop this.

I like to smell food, objects or people.

Offer Dylan a biscuit barrel or food item and he’ll take it, sniff it and if not desired will try to put it back. Sniffing is the decider for if somthing is to be eaten. Same with new objects. A good sniff will determine if the ball is worth playing with or if the glue will stick.

Dylans smell interest expands to personal hygiene with huge amounts of deodorant and toiletries being used daily. The smellier the better.

Difficulty dressing myself

Dylan has been taught to wear t shirts, both the right way around and not inside out. He wears pull on shorts or jogging bottoms. Jeans are too difficult. Shirt buttons are too difficult. All clothes are pull on and off. Shoes are velcro fastened, no laces.

Poor gross motor skills 

Dylan has just leart to ride a bike,  however he struggles with most areas of physical education, sports, balancing and climbing. On struggling with this Dylans anxiety increases resulting in  him often becoming emotional or distressed when in these situations. 

Same shoes.

Crocs. 

All the time. 

In winter or when its wet outside Dylan will wear trainers but this is only encouraged by us putting the crocs away out of reach for the winter. Dylan will always go batefoot as a default but we quickly discourage this. He has had so many sores to his feet from being barefoot, we always remind him to wear shoes.

Walk in tiptoes.

Actually no. 

This is a skill we had to teach Dylan as part of occupational therapy. The reflex of walking on tip toes was missing for Dylan so we taught it to him over a month. Also walking on heels on the inside of his foot and the outside of his foot. He just couldn’t do it. All these skills which are deemed as instinctive were missing for Dylan. 

Clumsy and stumble over things.

Yes. And Dylan is a boy who likes to have his feet firmly on the ground. He will trip over apparently nothing. He often drops things or goes to put a cup on the table but will misjudge it either spilling the drink or knocking the whole cup over. 

I can detest being tickled and squuezed or I can adore it.

Yes. 

And at the same time.

Occupational therapists often describe children as being either over or under sensitive to touch. I would sit in these parent training sessions and ask 

‘But what if your child is both?’ 

Dylan would laugh at a tickle for 5 mins then all of a sudden act as if you are tickling him with a red hot poker. No therapist ever answered me. 

‘You cant have both’ they would say.

 Dylan does.

Tags on clothing.

Not a problem. I think we just have naturally accustomed to tags or labels being problematic.

Selective with food.

Dylan loves his food but will not eat anything soft with something crunchy. For example Dylan will have crumble but no custard. He hates egg. And cheese. He seeks out hot, spicy salty flavours.

Dylan’s diet is not too limited but he definitely has his favourites. 

If sitting for a roast dinner Dylan will eat his potatoes first. Then he will ask for everyone else’s potatoes until everyone around the table has eaten all of their potatoes before he will move onto eating his meat. Once his meat is finished he again won’t eat his vegetables until everyone’s meat is also eaten, just incase he gets some more. When everyones meat has gone and there’s no chance of anymore he will then eat his vegetables. 

He forever lives in hope of getting some more of his favourite foods.

So that’s just a quick whistle stop tour of Dylan and his sensory needs; needs which intertwine and conflict with one another, causing Dylan confusion and anxiety. 

Dylan doesn’t have a diagnosis of sensory processing disorder. It is considered that these sensory needs are incorporated within his diagnosis of autism. 

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A family affair

Thursday is Dylans grandads birthday but we’re busy later in the week so we visited today to take cards and wish him a happy birthday. Not being a particularly close family we only visit maybe once or twice a year. Dylan’s not familiar with his extended family and they never seem to know how to interact with him. 

Sitting on the sofa together in my in-laws house Dylan led my hand to his iPad to add another button on the screen. He led me to the family page and opened up the function to add a photo.

He wanted another drink but knew not to ask his Dad or myself and that Grandad was the one to ask.

I was amazed that Dylan had independently made the connection that his Nanny and Grandad should be in the family members folder within the iPad. They both agreed to having their photos taken and now live in the family folder with the rest of us.

Dylan wasted no time in utilising the new buttons.

4

Creating Ospertunities for Independence 

I feel like I’m living for the weekend at the moment.

Its been a busy week. Dylan had a monthly educational workshop at the beginning of the week so we’re chasing our tails trying to catch up with all the resources and changes that amass from the meeting.

Still its the weekend now and I’m trying to encourage Dylans independence with interactions in shops and in public. It’s tough to teach when every situation and scenario is different. Also a lot could change with the ‘Great British Public’ who tend to look past Dylan and ask Dad or I what Dylan would want when they’re presented with the iPad from him. 

C’mon. Its not like you people don’t know how and Ipad works?! Jeez.

But Dylan doesn’t let this dampen his enthusiasm. Especially when there’s crisps to be brought. 🙂

Out for a Saturday stroll and we stop for a coffee. Dylan chose a milk shake but once we’re all sat down with our drinks Dylan asked on his IPad for a cola. I told him he had money, he can go get one. I literally had to ask everyone to sit down and let him do it. The anxiety from the whole family around Dylan managing this alone was unreal!

What’s the worst that could happen? The waiter may not understand. Dylan forgets to pay? So what? We’re all here with him. It’ll be fine!

Dylan goes with his iPad and gets in the queue skipping and hopping like the Duracell bunny but he waits where he needs to until the young lady serving tries to take his order.

Her face!? She looks totally out of her comfort zone at Dylan showing her the iPad and making his request. Again I remind everyone to sit down; Dylans got this. 

He looked straight at her. He turned the device round and calmly placed it in her hands so she could read it. 

‘Oh okay’ she says and scuttles off to get his beverage. 

We gesture to Dylan from our table to get his money ready and when she comes back to him with his drink he hands her his card to pay.

Dylan has an Osper prepayment card for children which had a chip and pin number so he doesn’t need to carry lots of money with him. He knows his pin off by heart, knows which end to put in the machine and knows to wait before removing it.

Transaction complete.

Quite a queue had grown by this time and Dylan had his iPad, his drink (which would always be the priority item!) his wallet and now the Osper card to put away. He left his wallet on the counter and brought over the other items to the table. He needed reminding to get his wallet or otherwise he would have just left it and a kind lady in the queue held it or for Dylan to take it.  

I would’ve liked him to thank her but often unprepared situations or members of the public don’t allow the time needed for a successful aac response. 

Maybe next time.

Everyone at the table congratulated Dylan on how well he did. Almost like they were surprised. Not me. I know he can do it.

He has the Osper card, he has the skills, he certainly has the drive. All he needs now are the opportunities. It’s becoming more and more apparent that we are not giving Dylan the opportunities to develop his confidence in these situations.
After this we went to the supermarket and Dylan used the iPad to ask for some cracker samples, he requested to buy some crisps and then went and attempted to use the self service machine. More support was needed for this but his enthusiasm and determination to achieve success is, as always, admirable.

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Buy buy love

Dylan has mild obsessions; mostly foods. Its not really a problem. He will ask for his favourite snacks crisps and cola. All the time. Easily 50 times a day. It’s a pleasant polite request of ‘I want crisps cola please’ but its continuous. 

We will let him buy these treats maybe once every couple of days. He loves full strength Coke but I make him get Pepsi Max so it has less sugars. He always selects a packet of Hot Doritos to go with them. 

Yesterday after school we went to our local shop. Its a fair sized local convenience store and having just been the end of school the shop was slowly filling with noisy secondary school children. 

Dylan, unfazed by the increasing babbling around him, did his usual request for his favourite snacks.I nodded my approval for this to him from the other end of the aisle and he nipped behind the next aisle to select his treats.

Luckily Dylan doesnt bolt off like he did when he was younger. He is still incredibly vulnerable though in that he gets swept away with crowds of people and will never really seek us out. Thank goodness he has never been lost but that’s only through our relentless insistence to always hold our hands or stay close to us when outdoors. I am slowly coming to terms with giving him more freedom from us but today the shop was far too busy. 

Josh and Grace passed me their snack choices as I tried to work my way through the now very busy aisle towards the tills to meet Dylan and pay. I could just see Dylan further down near the tills; occasionally losing sight of him as the queue between us became engorged with the ever growing flow of noisy boisterous school kids. I could see him enough to know he was safe but he was too far ahead for me to call him back or get his attention. 

But Dylan was cool. He heard the cashier when she called for the next person in the queue. He handed over his goods and quickly got his cash card ready. The cashier didnt interact with him; obviously far too busy to make small  talk with another irritating child on her already busy shift. This suited Dylan fine. He picked up on her cue for payment and waited until the payment machine asked for his pin number. After punching in the correct number he waited again until it was okay to remove his card and he replaced it back in his wallet. Dylan then collected his goods and his receipt and before waiting at the door for the rest of us. 

Cool as a cucumber and so so happy with himself. 

Now he knows he can get these prized treats by himself they’ll be no stopping him!

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Dinner date

​Just had the best evening out on my own with this little guy. 

He ordered all his own food and made a  choice between another fizzy drink or a pudding- (pudding obviously!) which he chose and ate in record time. 

I started filming as Dylan began typing as I expected him to ask for another coke. Instead he spontaneously thanked me! Bless him. 

Seeing my surprise and joy at his’thank you’ he then independently went to the bar and thanked all the servers with his iPad before we left.

 He left the pub cackling with pride and making everyone smile 🙂