Aside
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We’re all for trying new things, Dylan included. So when dinners involving a new item Dylan likes to check it before it’s dished up into his plate. Actually as soon as the serving spoons are out Dylan’s hovering around the kitchen checking out what’s going on.

Tonight’s dinner involved cous cous. Moroccan cous cous. Now Dylan likes rice and pasta and he certainly likes spice but in this combination. Not heard of before.

Dylan’s flapping around the kitchen so I get a small spoon and offer him some from the pan. Dylan sniffs everything before it goes into his mouth. Cous cous passes the sniff test and he goes in to take the while lot off the spoon. No gagging or grimacing Dylan swallows the lot. I go to put a spoon of it into his plate.

‘Non ‘ 

‘No? You don’t want any more?’ 

‘Non.  No danoo’  (No thankyou) shaking his head. 

‘Oh okay’ 

It’s no issue if he doesn’t want any. I’m just glad he tried it. Dylan’s still flapping in the kitchen. Then within ten seconds…

‘Yah bee’ pointing to the pan of food.

‘Yes? You want some?’

‘Yah bee’.

At home this perceived indecision isn’t a problem but it can take 5-10 seconds for Dylan to process the a relatively closed question and produce his correct answer. I think it’s his anxiety which is based on him knowing that an answer is expected which almost makes him knee jerk into a response be it correct or otherwise to avoid being wrong. Not having this delay acknowleged when out in public can result in Dylan’s verbal communication being futile and causing him further anxiety. Having the iPad as the first mode of communication when out produces more of a delay than when Dylan is speaking verbally. However if Dylan’s  speech is understood but its not his correct response then it can be problematic.

More so I’m understanding that complex communication issues and disordered speech sounds are Dylan’s greatest difficulties.

Oh and he ate the lot!

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Crash, mugum and other wonders 

Holidays are great for getting away from everyday life but also for spending non stop time with one another. Some families may not like this too much but as we hardly spend any time all together at home for us to be on holiday and have 24/7 in each others company is bliss!

Being away together also gives us time needed to fully embrace Dylan’s iPad use. He is supported to use it for every interaction both with us and new people. We can model words for him and add vocabulary to it as it’s required. 

In addition to this Dylan’s becoming proficient at adding his own words too. He can independently use the iPad to take a photo of an item or person that’s not in his vocab list and then use the drop down keyboard to type the word in. Dylan struggles with the spellings in this bit but is able to write enough for us to be able to understand and type the correct spelling for him. Self directed pictures and typing is a useful technique we are encouraging to enable Dylan to generate his own working vocabulary. This week already we have had

‘magum’ for Magnum icelolly 

‘hannk’ for hammock and 

‘crash’ for a computer game which he remembered both the location of and correct spelling for since our visit here last year.

This boy astounds me.

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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