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No Dignity

Source: No Dignity

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Making requests other than food.

Dylan wants to say something on his iPad. He’s loaded the sentence but doesn’t want to hear it: probably because he knows the answer will be a firm no. (Dylan lost his pudding today as a punishment but that’s a whole ‘nother story!)

Because he won’t turn the iPad volume up I can’t hear his request. I tell him ‘Dylan I can’t hear it, turn it up’.
Dylan has no choice but to turn the volume up if he wants to have a chance at pudding. But he really doesn’t want to hear the request (as Dads probably already answered it) and neither does he want to hear me repeat Dads negative response to his pudding plea.
So this is a video of Dylan trying to untangle his ear defenders from his iPad strap so he can put them on before turning the iPad up. I know he’s in a tangle. I know he probably won’t be able to untangle them himself but I’m going to sit and wait and not get involved until Dylan makes an important request for something other than food. 
**Dylan needs to ask for help.**
Dylan was probably trying to free his ear defenders for about 40 seconds before I began recording. Including the 24 second video thats a minute of Dylan struggling before he makes his request. 
It just goes to show that despite Dylans ability to use his voice, be it verbal or with the iPad, for something less motivating than food he needs more time. 
He needs more time to focus and more time to either coordinate what he needs to complete the task or to coordinate what he needs to gain assistance.

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Questioning times

Wednesday is my dinner out with the kids. I take one at a time for a bit of Mumma time. Dylan loves his Wednesdays, in fact every Wednesday, no make that every Monday evening we are already putting the feelers out for whether this Wednesday is *his* Wednesday.

When it is, we hear about his plans all day, he checks in with me regularly

‘Wednesday Pizza Hut’ 

‘Yes Dylan this Wednesday we will go to Pizza Hut’

I love it.

 

Things have changed recently at Pizza Hut; they did a buffet with refillable chips which Dylan loves. We have the same waitress who is absolutely lovely. She seeks Dylan out and knows that he really loves his food. One thing I love about taking Dylan to Pizza Hut is that the staff never really talks to me – Dylan orders us a table and gets us seated independently; the staff familiar with Dylan don’t even speak to me – I’m just with him.

This waitress loves to see how Dylan is and check he’s okay throughout our visit. As soon as Dylan’s bowl of chips runs empty she’s there ‘Would you like more chips?’ She understands Dylan’s ‘Yah bee’ and happily rushes off to get him some more.

However four – yes four bowls of chips later and Dylan’s looking grey, instinctively I took him to the toilet where he then threw up the aforementioned chips.

It got me questioning – what do I do? Do I stop him from eating so much like you would a toddler, or do I treat him like his 14 year old self and let him decide how much he wants to eat? 

Josh and Grace definitely wouldn’t be allowed to eat that much but then neither would they want to as they know it would make them ill and I’m not sure if the waitress would offer the other two so many refills? Dylan is treated differently in what could be deemed as a positive light. Where he is so restricted in his communication and lack of interest in so many things when you do catch his interest it’s hard to say no to him or not grant his wishes. He does get treated differently to Josh and Grace who would often be told no to a second pudding but see Dylan eating his third because we were so happy that he initiated a interaction with us to request it that we agreed with him. But that isn’t right, nor is it sustainable.

I brought this up a recent ABA workshop where Dad and I talked through reflectively the issues that I know I have always had with telling Dylan ‘no’. I’m ashamed to say that once I let him eat 6 hot cross buns as he kept asking for them and I was so scared that if I said no to him then he wouldn’t ask me with his little PECS pictures anymore. Silly but that’s how autism affects you as a parent; Terrified of regression.

Then we realised we ask ‘Would you like…?’ when of course Dylan is taking the question literally; yes he would like but that doesn’t necessarily mean that he should have the said item. 

We could ask Dylan ‘would you like ice-cream or a lolly’?’ Dylan will get muddled and ultimately answer both. Which of course he wants both but the fault is in what we are asking. The method of our question is naturally confusing for him. 

From this workshop we are changing what we ask Dylan from ‘Do you want?’ to ‘What will you have?’ A more concrete question more steered to one specific answer than can be a truer reflection of his answer rather than a combination or false answer.

So when at Pizza Hut and Dylan’s next asked ‘would you like more chips?’ I will intercept with a ‘Are you having more chips?’ which then formulates the opportunity for Dylan to provide a more realistic ‘no’ after the second portion.

Wishful thinking eh?

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Not hanging around for washing 

Everybody in this house hates putting their clean laundry away. But no-one more that Dylan.

It’s probably due to the endless piles which, no sooner are they hung away, seem to grow again, larger and at a frightening speed.

Through months of ABA teaching, tens of skills are taught tiny bit by tiny bit until Dylan is confident that he can remember and apply them when needed. Examples of tasks taught are sorting, fine motor skills for how to work pegs – this was a 4 step program alone requiring work on pressure of fingers, angle of hand/wrist, when to squeeze the peg and when to stop squeezing the peg (and let go!) A timer programme for the washing machine, sorting programmes for clean and dirty as well as wet and dry and then a whole programme on how to ensure hung clothes stay on the hanger. This is all in addition to a whole bunch of other previously taught skills and learning which was tweaked so that Dylan could apply this previous learning to washing specific learning to ensure his laundry tasks were successfully completed.

The skills for washing are now chained together enabling Dylan to load and unload the washing machine. He’s both a pro at hanging the clean, wet washing out on the line to dry and will also take the load down again once dry and bring it indoors in a calm controlled fashion without pinging clothes pegs everywhere (much better than Josh and Grace do it!!)

But this end bit, the putting away bit, causes him no end of anxiety. He can put the clothes on the hangers and hang them up in his wardrobe fine but between each item joining its hanger and them being put away he has to bring it to us and thrust it in our faces.

Every. Single. Item.

No words. He just shows us he’s done it. We praise him for each item successfully on its hanger and then he grumbles off to hang it away.

Well done Dylan 🙂

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Ever increasing expectations

A new Speech and Language Therapist came this week; the purpose was to offer advice with progressing with Dylan’s IPad. I think she came under the impression that we needed clarification on if the P2G is the right programme for Dylan. Lucky for her she agreed that it is indeed the right programme for him as he is doing so well with it.

As a family we are self-taught with the iPad; we instigated it, brought it, researched its use and implemented it. Although we Dylan shows us every day it’s a success it was so nice to have professional recognition that Dylan’s working well with it.

Dylan uses the IPad with greater ease each day. He has requesting down to an art. Initially with motivating food but he will now request places, items and even people. The next step is opinions, questions and turn taking. If we can get these practiced then we have the pillars of conversation!

Plans for future goals are for Dylan to use the name of the person he is addressing. Dylan really tries with making eye contact when he is speaking to people but with his jumbled up speech and the time delay of writing his words on the IPad the purpose of eye contact in gaining attention is often lost. If Dylan can use the name of the person he is talking to this will direct his speech more appropriately and increase success in an interaction. The use of names also helps Dylan to label his requests. A previous request for ‘car’ can turn into a request to visit Granny with the right words used.

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To ask questions and give opinions ‘Would you like some? How was work? Where are we going?’ Dylan will make basic requests which could be manipulated into questions but we also need to expand on these. An example of this is recently when Dylan requested ‘pizza please’ when what he was signalling was that he actually wanted some of mine – I returned with modelling ‘Can I have SOME of YOUR pizza please MUM?’; same message but a more acceptable use of words.

On a separate day when asked if he would like cheese on his dinner Dylan’s verbal ‘non’ was then prompted with the IPad to develop into ‘No I don’t like cheese thank you’ with little more than verbal prompts for the words needed, Dylan found these on the IPad by himself.

Once shown where these words are Dylan will often remember them and use them spontaneously himself.

Once equipped with a range of opportunities to practice his option and ask questions we just need to integrate this with the ability to turn take in a flowing manner.

Generalise and voila we have conversation! Simples 🙂

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Happy birthday Mister!

Well. 

Dylan’s 14.

Not sure what I have to say about that. Apart from

Where’s the time gone??!

This year’s birthday Dylan definitely understood more. He looked out for his name on envelopes and opened those addressed to him and enjoyed placing his cards out on the unit for all to see. 

He looked through the various home shopping catalogues we have and asked for many many items for his birthday (shame we were looking for ideas for Joshua birthday at the time but hey-ho! What a development of awareness!). 

He chose his birthday cake and planned his birthday meal out. He has genuinely seemed excited about it.

First thing this morning Josh and Grace performed a ‘chicken nuggets’ song and made up a dance show for him which finished with the bringing out of a platter of all of the chicken nuggets in the house cooked for Dylan to eat for his breakfast. The whole thing planned and executed totally independently by the younger ones. Dads face was a picture on the presentation of the nuggets and Dylan was in his element!

Presents are always tricky and despite Dylan’s interest in the shopping catalogues it was tricky to find him something suitable as a gift. 

Dylan’s main present from us was a classic games console and a tv for his room. Where the boys shared a room and tv before we moved Josh has inherited since they have had separate rooms. Now Dylan has his own tv we’ve hardly seen him. He loves the retro games and plays them for hours, and he plays them well!

There’s something very satisfying about having your strapping son enjoying games that you played when you were younger than he is now.

Happy birthday boy x

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Best foot forward

Dylan went to the doctors today. Thankfully as a healthy child he doesn’t see the GP much. At all.
But recently I’ve noticed small bones protruding from just above the arches of his feet. The bumps are rubbing on his shoes resulting in him having small pressure sores developing. Dylan’s having to wear socks in the current stifling heat to avoid the skin there breaking down further. 

Although Dylan lets me look and check these lumps without complaining, his body language tells me it hurts. He flaps violently when he thinks they are going to be touched, his whole body stiffening with anxiety until he is reassured thst these sensitive areas won’t be meddled with.

We had no option but to visit the GP. We talked this through with Dylan who appeared to be okay and understand the basic process we were explaining to him. 

Appointment time came and went but Dylan was a superstar waiting patiently in the busy waiting room for his appointment. Finally we were called into the GP office Dylan kept his anxiety under control and allowed the doctor to look and feel the bony protrusions. I explained to the doctor they don’t look right and seem sore although Dylan’s communication difficulties make this really hard for him to relay to us.

‘Its all fine ‘

 doc said as if I was being a bit silly bringing my concerns. He went on…

‘We all have different feet, as long as he is exercising plenty he’ll be fine. 

Keep him moving”

That’s it. Consultation over. 4 minutes.

Dissatisfied with the advice from the GP we leave politely and get in the car so I can contact my default doctor for advice; 

Dr Google: search term “painful bump on side of foot”

First result of many all saying the same thing is this:

Seems Dylan is fitting the descriptor for a diagnosis of having Accessory Navicular Bone. 

Side effects of which are possible fractures, loss of stability of joints, development of ‘flat feet’, loss of mobility and pain which “gradually becomes worse, and… is aggravated by activity, walking, etc.” Resulting in Accessory Navucular Syndrome which can be debilitating and require a range of treatments.

Seems my inital discontent at the advice of ‘exercising plenty’ was not misplaced and indeed will not remedy this issue. 

I’m so mad! 

  1. Dylan has his diagnosis of autism in bold on his medical notes on the computer screen. 
  2. I told the doctor clearly that Dylan can’t tell us if he’s hurting. 
  3. We never go to the doctor but had presented for this ailment so it clearly is a concern and we were nothing short of fobbed off. 

First thing tomorrow; I’m self referring to a podiatrist for a proper examination for Dylan and some advice for me. Something I think I probably should have done in the first place. 

Grrr!