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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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21 days of modelling… day 18

I love my weekends.  I’m a firm believer in the 2 day week and 5 day weekend.

Unless I become Prime Minister or win the Lottery its a five day week of work for me for the foreseeable future so my mini weekends are precious.

We are lucky as a family that Dad and I both have flexible and understanding employers which allows us a small amount of time at the weekends to spend together with the children.

Today it was Dylans choice of activity and although he was out of the room while the possible plans for the day were being discussed he soon piped up with the IPad that he wanted to go the the local village pub for lunch. Unprompted; Wow! 🙂

Dylan doesn’t have limited food obsessions. He largely just loves food. He has a spicy, salt seeking palate at home but when we eat out he often uses the Ipad to request chicken and chips or burger and chips- simple items which are usually available from the kiddie menu.

Today we used the IPad to model requesting different foods. We modelled to Dylan the different items on the menu and he was quite taken with the idea of chicken skewers and concentrated to correctly spell them out on the IPad.

He loved them! A proper adult sized meal from the big boy menu and he ate the lot!

Its really nice to see how he’s starting to realise that there are words all around him that he can tap into successfully.

No food pictures I’m afraid, we were too busy eating!

Here are some snapshots from the Ipad instead. 🙂

 

Dylan ordering his meal

Finishing breakfast and then some sensory seeking

Requesting breakfast. No butter thanks.

Clear plans for the after lunch activity.

New words- 24
Total words- 169

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He will be okay

 

 

Everyone’s out in the garden, the little ones are making up a dance routine and Dylan goes over and discreetly knees his sister in the side. It’s not an aggressive move, don’t get me wrong it could knock over a small child but it’s not as violent as it could be. His sister carries on playing – turning a blind eye to her brother’s bad behaviour. Not me.

‘Dylan, come here. Why did you push your sister? Get your Ipad, what’s wrong?’

Dylan gets his Ipad, whining and groaning, obviously not happy and at risk of spiralling, spiralling up and out, up and boiling over into fury, grabbing at himself, the pitch of his whine becoming higher and higher, more strained at his at his inadequate attempt to suppress his feeling, to supress whatever it is that he needs to say, to shout about, whatever it is that’s swimming around in his head causing a whirlwind in his mind with no opening or outlet to be released so it continues to swim and swirl, continuing the confusion, the upset, the fury.

He uses all of his focus for a couple of seconds to block out the confusion of emotions and tenderly pressed the buttons.

pic1

‘Sad? You feel sad Dylan?’ Dylan has never told us how he’s feeling before. We often ask him how he is feeling but he just doesn’t have the words to tell us.

pic2he gently pushes the buttons. Then againpic3

‘You feel angry?’

His little face looks at me, almost studying for a second – Did she? Did she understand me? He looks back at the Ipad and continues to press the buttons

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I feel my throat tighten, choking me ‘What hurts Dylan? Tell me, please?’

He beings to swipe through the buttons, looking intently for the next option that he needs. He glides through the array of pictures that I have clumsily placed on the screens for him. No pattern or purpose to them, just words that Dylan has been exposed to previously and we have feverishly hoped that he would retain and use if he ever needed to. He begins to select more buttons.

pic6pic7

 

‘Your head hurts?’ I ask and Dylan looks up at me with pain in his eyes, sad eyes and then he find the buttons to continue.

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And there it is. He feels excluded, he wants to play. His aggression towards his sister was because he wanted to play with his brother. I’m astounded but also saddened. Standing there at the back door holding the Ipad. A simple tablet which has just shown me a chink of insight into the personality of my beautiful boy, his feeling, his isolation, his sadness but has also shown me the ability for him to emerge out of it. My eyes prick as his sibling hear Dylans requests and take turns in kicking the football to each other, gently encouraging Dylan to play and share with them. And for the first time ever I feel a sense of calm. He talked; with intent, with purpose and he made things better for himself. I realised then; He will be okay.