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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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What’s in a day?

It’s Dylan’s birthday next Saturday. Since Joshuas birthday last week all talk has been preparing Dylan for it being his birthday next.

He has picked what presents he would like, what he would like to eat, which restaurant he would like to dine at. Hell, he’s even picked his birthday cake. We’re ready. 

Shame is that in all the preparations Dylan has overlooked the fact that it’s his birthday NEXT Saturday and not actually today. 

Dylan’s having none of this ‘we’ll do it next week’ business and is still sitting on his bed fully clothed with his coat and shoes on waiting to go out for his birthday dinner when it’s really late at night and he really should be ready for bed. 

Only another 7 days to go…

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Dear seat 12a

You turn around in the luggage queue and we briefly made eye contact. That was just before another coach load of 18-30 club holidaymakers spilled into the already busy and humid airport ready for their late night flight back home. We broke eye contact as I helped Josh usher Dylan closer into the protective circle that we were enclosing him in, away from the bustle and the noise.

The queue moved slowly and Dylan being tired and disorientated wants to wander out of our protective hold. He wants to sit down and rest his weary legs. The chairs are on the other side of the packed waiting room; Fine for a teenager usually but Dylan’s bright red ear defenders suggest to you that Dylan is not a typical teenager. Again you turn and look and I smile as I meet your glare. You break my eye contact without response and turn back to your conversation with your companion.

The waiting to travel is always long and appears even more so when homeward bound in the middle of the night. The children are slow and tired. The flight is practically boarded by the time we find our seats. I see our seats are directly in front of yours.

The flight home is long and uncomfortable. The babble of aisles of rowdy boys quickly quieten as they all fall asleep. I know Dylan rocked on his chair and that disturbed you resting you head on your tray. I know that he giggled at times and that you heard him loudly ‘shuuush’ in response to my visual request to him to sit quietly. See, he was so tired and so anxious, it was too quiet on the plane and he can’t sleep with the light on; you were reading by your overhead light for the first 2 hours of the flight and he doesn’t understand that he should be trying to sleep even though his seat was illuminated by your bright reading light. By the time you decided to switch your light off and rest your eyes Dylan had passed the stage of sleeping and we were going to remain awake, regardless of how tired he was.

I promise you he did his best to be quiet. He giggles and rocks when he is nervous and I desperately tried to quietly reassure him so as not to over stimulate his already highly anxious state.

Please believe me when I say he did so well, despite him hearing your mumbled comments and disgruntled huffs at him moving the tray on the back of his seat with his rocking. He didn’t respond or allow you to heighten his anxiety further.

I did my best to reassure him he was doing great when the unkind or unhelpful comments you made about him smelling were made loud enough for him and others around us to hear.

I was so relieved and so proud when those aeroplane wheels hit the tarmac back at Gatwick; Proud of Dylan’s resilience and relieved that you and I could get on with our separate journeys.  I praised Dylan openly and loudly in your presence. He did do so, so well, he did amazingly at self soothing and calming himself to be able to get through the three hour flight. The work for Dylan to manage that took more effort and drew on lessons which have been learned over many painful hours to formulate a smooth and socially expectable journey. More time and effort invested that you would ever realise or probably ever appreciate.

If you come away from three hours sitting behind Dylan in an enclosed space and all you have to complain about is the rocking of the seat in front of you – which is only affecting you because you are leaning on his seat – then I am glad. Dylan worked so hard and the journey went so well that we are not going to let you or your unacceptable intolerant ways ruin it for us.

In fact I’m glad he blew off at you.

Oh and I hope you lost your luggage.. 🙂

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Shhhhhhh!!!

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Feeling hot, hot, hot!

A scorching day today. 

Dylan continues to appear to have minimal awareness of how hot he is. He rarely sweats and insists that he sleeps with a thick blanket wrapped around him despite the temperature being 29 degrees overnight last night. 

Dylan is drinking plenty of water but is not requesting any independently and instead relies on us offering him sips literally every 15-20 minutes throughout the day. If he isn’t drinking little and often than he guzzles the water and it ends up making a reappearance leaving him at even greater risk of dehydration. 

We got up late this morning and all had breakfast together instead of mixing and matching between some of us eating and some swimming as we usually do. After eating its a rule that we make all children stay out of the pool for an hour to let digestion settle but today once the hour was up we were even further into the hottest part of day with the thermostat hitting a whopping 39 degrees celcius. 

We used the time together teaching Dylan how to play chase the joker. Dylan’s really good at recognising when he has a pair of matching cards and although he required assistance to take his turn and hold his cards correctly (fine motor difficulties again) he really seemed to tolerate the game. Josh and Grace were really kind and let Dylan pick the cards that he needed for the first couple of goes. 

By the time Dylan got into the swing of it he was winning independently! 

Playing cards is definitely a skill for us to practice and nurture for Dylan to access further age appropriate opportunities and social bonding.