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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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Up, up and away 

Grace’s 10th birthday party was this week and she opted for a climbing theme. We arranged for seven giggling 9-10 year old girls with Josh and Dylan to all have 90 minutes on a climbing wall with an instructor.

Dylan appeared keen from the get go. He quickly grabbed himself a helmet when instructed but then the whole concept got a bit real and from that point on Dylan was a bit more apprehensive. 

When Dylan starts to get anxious he will whine and winge and usually sit out. He get frustrated and bored and will then require direct attention from a parent to ensure he is kept focused and behaviours don’t spiral for him. This isn’t bad behaviour but Dylan’s anxiety coupled with frustration at himself for being unable to complete the task. To most people they see “Dylan can’t do it; he needs to sit out.”

The party leader was relatively new so she was being supported by a more experienced instructor, lets call him Bill. On the registration form it requested any medical details for the children and for Dylan I added ‘autism -non verbal’.


Bill instinctively saw Dylans anxiety but also his wish to be involved. He showed Dylan the equipment and let him hold it before asking if he would like to wear it. He spoke directly to Dylan and copied the way I gave Dylan simple language and clear choices so Dylan could repeat his option back to me.  
Dylan will link onto my arm when we’re out and gradually through the party when he was ready to try a bit more equipment or to feel the wall a bit more,  Dylan started to unlink my arm and go and link arms with Bill.

Well. He only got on the flipping wall!! And more than once!!


Bill was so supportive and reassuring for Dylan. Once off the floor Dylan would panic, it looked like his correctly fitting groin harness was sending him into sensory overload and he wanted to get down now. Dylan would grab onto Bill’s hands and hold them tight but Bill took it fine. Some people recoil when Dylan tries to touch them. I suppose being an adolescent boy Dylan has some tactile needs that are closer to a boy younger in age; like the arm linking or hand holding and not everyone understands why Dylan does this. Bill didn’t care.  
Bill was cool.

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Looking Back on 2016 – September

 

Back to school after the summer break. I so love having them at home. The house is so noisy, so messy, so lived in. We have seriously outgrown this house, it bulges when we are all in it together. It bulges with love, with laughter, niggly arguments and catty comments. We all adore one another.

The academic years starts quickly with targets being set and the pressure piling on. I believe the Autumn term is the hardest. So much rest and relaxation over the summer months and then there’s the looming dark evening that become cold dreary afternoons, The expectation of better behaviour, better attention, better grades ‘now you’ve come up to class X’ when really only 2 months have passed since they were in the little class below when they could watch films and make models out of cardboard and nothing really seemed to matter. It’s a lot of pressure from ones so young. They get tired and irritable and stressed and their heads hurt from trying to remember everything, new rules, new procedures, new expectations.

So I started to take the children out one by one, for dinner, to given them that little midweek boost and to allow them a small respite from some of that pressure. Its been great. They each take it in turns and we go out for dinner and a chat. The boys love it, they eat and we talk – Josh more than Dylan –  but we still talk! Grace not so much, she gets upset with talking, she’s a little pressure cooker. I’d love for her to speak freely about her concerns and worries but she won’t, she hates getting upset. I have let her know that I am always here for her to talk but she always says she doesn’t want to. So for her we go and do something else. We go bowling, or to see a film or something where we don’t have to talk, we can focus on something else and enjoy each others company.

I love spending time with them, they are great people.

I love it. I really do.

I hope they do too.

Image may contain: textDylan’s favourite place to go is the local pub. At first people would look over at us, Dylan would order his food loudly on his iPad and with it being quite a quiet village pub people would look at him humming or stimming. After a couple of weeks of visiting the staff became very used to him. I always ensure that Dylan would order his own food and drinks using his Ipad. Some staff would still look to me for clarification for this but I would simply ignore them. I’m getting quite good at that; ignoring people. Much like people try to ignore Dylan when he talks to them.

Facilitating communication with other people in resturants at the moment comprises of the same routine at first…

  1. Us both being asked for our order,
  2. Dylan will answer with his iPad,
  3. The waiter will will then look to me and ask me a question about Dylans order, be it sauce, size of portion etc.
  4. I will then look to Dylan in silence.
  5. The waiter will then repeat the same question.
  6. Again I’ll stay silent but I will switch on Dylan IPad as a prompt for him having to answer the waiter.
  7. The waiter will then stand and wait while Dylan types out his response.With me smiling sweetly at them both. By this point the waiter has usually grasped the point.

This process really only needs to happen once or twice before they realise they get more response out of Dylan than they do me. Works every time!

 

 

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Christmas 2016.

It’s been a wonderful day on so many levels. We have been a family. We have looked after one another, focused on one another and been there to support and enjoy one another.  A real family Christmas, it’s been great. 

But it’s also been a time for reflection. Now this is not a sad post but one to remind of how fragile we all are, how every moment should be relished and enjoyed and how we should focus on what’s really important and not get lost in the smaller issues.

I’m holding my little ones close tonight when thinking of the international terror that’s been occurring in recent months. Feeling lucky that I am born where I am rather than a war-torn climate. I’m feeling thankful that I am loved and that both myself and my loved ones are healthy.

I am thankful for my steely determined views and that I am surrounded by people who believe in me, take a chance and allow me to act on my beliefs and hopes. 

I am reminded that this time last year things were so different. For Dylan theres been so much progress made, developments, friendships blossoming. But also in wider circles unexpected deaths, changes in health and some relationships shattered. We don’t know what’s around the corner; none of us do. That’s why it’s so important to live in the moment. Take a chance, right here and now and make it matter.

Wishing everyone a merry and peaceful Christmas  xxx

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Ha-ha-happy Halloween!

Halloween. 

Not one of Dylans favourite celebrations probably due to the lack of preparation. The decorations go up that day and come down the same day. The costumes are uncomfortable and with it being a school/work day its usually all a bit rushed. 

The golden rules are broken and suddenly everyones out knocking on doors and taking sweets from strangers. 

I can see that it must appear bizarre and very unsettling.

So this year we did things a bit low key. Dylan wanted to dress up like the other two but instead of going out we drove them round to my mums for a hot chocolate and a handful of mini chocolates each.


And for the last day in October, and the final day of AAC awareness month, we set it up so that Dylan could treat us to some Halloween jokes.

Happy Halloween all 🙂