0

21 days of modelling… day 14

A busy day today with a visit from Dylan’s speech and language therapist. 

The focus of these sessions is to work on Dylans speech production sounds using resources from the Nuffield Programme for Dyspraxia.

It’s work that Dylan finds stressful.  

The repetitive nature of the drills make him anxious and the natural inclination of the therapist when he makes the correct sound is to 

  • give him a big ‘yayyy!’, 
  • gets him to high five her and then
  • he has to repeat the sound. 

From Dylan’s perspective he tries his best to make a difficult sound, 

  • gets shrieked at, 
  • invited to have his hand slapped and then 
  • he has to do the difficult sound again as if it wasn’t right the first time. 

I can see why he appears so irritated yet baffled by the activity.

Despite this Dylan persevered and managed well. He was praised directly as well to us as parents for the great progress he is making and the therapist suggested that we must be completing a lot of the drills for Dylan to be improving so much. 

I advised her that we have stepped away from the table drills and attributed his progress verbally directly to his recent modelling. 

Its as if by removing the need to talk verbally to communicate in turn removes the pressure to perform which affects his dyspraxia so fiercely. 

He seems proud of his ability and is more relaxed making speech sounds when there is no requirement behind it. 

Throughout the rest of the day we have had a mixture of AAC and verbal talking which has worked well. 
Grace made a game up this evening involving messages describing prizes were being hung from the ceiling on little bits of folded paper. 

Each family member has to jump and pull a piece of paper from the ceiling and then read the message out to the room to get their prize. 

Dylan was keen to get involved and jumped high to select his note. 

We sat together and he typed out the message inside of his note very carefully letter by letter without any help before skipping off to collect his prize.

New words – 14
Total words- 113

1

21 days of modelling… day 13

“Opportunities multiply as they are seized.”

Sun Tzu 

 

Activites. Chores. Surroundings.

These are no longer mundane things or objects but now perceived as opportunities. 

Opportunities to model. 

To discuss.

To share and to learn.

I feel as if the world has opened up to show me my surroundings as being new and gleaming. 

Fresh and crisp with the opportunity to share while gently warming with the potential of giving me the tools to reach out and share time with my boy.

I feel truly blessed.

New words-11

Total words – 99

4

21 days of modelling… day 12

Cinema day!

We go every month to the autism friendly screenings held at our local cinema. They have been run once a month for the last 3 years by Dimensions a disability charity. These sessions are designed to be inclusive. The screening environment is not too loud, its not as dark as usual showings and viewers are allowed to move around the cinema.

We go every month, in fact due to the summer holidays we went last week too. Last eeek we saw The BFG and todays showing was Finding Dory. 

Dylan chose his snacks before we went and he excitedly sat to watch the movie. He always gets giggly at the cinema,  I think its anxiety from the expectations of having to sit still and watch the film. This often settles with a bit of reassurance. 

Otherwise its been a restful day off. We didnt follow any time schedule, no clock watching and minimal expectation to use the Ipad unless he felt he needed to. I think I’m still reflecting after my exhausing attempts yesterday to solely use the Ipad to communicate so he had a day of less expectation and a bit more rest. 
Full on modelling will recommence tomorrow!

New words -4

Total words – 88

1

Missing Kreed

It’s been 3 months since Kreed passed away. A young man that I never had the pleasure of meeting but who inspired me from across the Atlantic Ocean.


He was the first person I had seen who reminded me of Dylan and I immediately felt drawn to him. 

Same mannerisms. 

Same humour. 

Similar difficulties. 

Kreed gave us an insight into how non verbal communication and aac could work and for that I will be forever inspired. 

His communication needs were so similar to Dylans but they were expertly managed by Erin his mum who would work continually with him and his aac device. 

I was enthralled. 

For the first time with communication I felt hope and I knew I had to learn what to do to help Dylan the same way. 

I followed Kreeds journey for 2 years before he sadly passed away on 12th May 2016 aged only 18. 

No age. 

A life cut short. 

The final few months of his life are shared here in the recent post from Kreeds World.

I think of him every day.

Photo taken from Facebook page Kreeds World: A Complex Journey Through Autism.

3

Sibling love

Dylans siblings are the kindest sweetest children who are growing into the most respectful, patient and globally enriching young people. 

They sacrifice their space, toys and attention selflessly time and time again. 
Sometimes graciously, often without realising. 

They are inclusive and considerate. 

They actively encourage Dylan to progress and support us as parents to allow us time to concentrate with the endless educational resources, paperwork and meetings Dylan requires. 

I am so immensely proud of them.

3

21 days of modelling… day 11

Today I tried to be non verbal. 

I lasted 4 hours before I became too frustrated and gave up. 

Instead of talking I used an Ipad with Dylans programme on it. I first explained this to Josh and Grace who thought it would be a good idea and were supportive of me trying it. 

I was slow. 

I had to keep changing what I was going to say as I couldn’t find the words. 

People got bored of waiting to hear what I was writing to say. 

I found myself holding my breath trying to focus on what it was I wanted to say.

I found myself sitting hunched over the Ipad alone, flicking through the icons to try and find what I was looking for when Dylan came and sat with me. 

He brought his IPad over and seemed to think I was telling him what to type. He kept looking at my Ipad and copying the icons onto his. 

We didn’t converse but we shared the location of button and words and I told him how proud I was of him using his IPad to talk so well as I find it so hard. 

I lasted communicating non verbally until lunchtime and then used my voice. I felt exhausted by the effort of this morning using the Ipad and have been feeling reflective at the enormity of what feels like teaching another language. 
So we went out for lunch; we continued to model and give Dylan time to think and choose his answer. 

Dylan seemed a bit withdrawn after dinner. Quieter, with less stimming and his usual physical twitching. 

He’s spent the afternoon sitting in the garden on the cabin steps watching the others play. 

And that’s fine. He had a tough morning.

New words: 9

Total words: 84