As the children are getting bigger we are out growing our lovely home and are currently waiting to move.
This poses a number of issues.
We have spent years gradually accomodating autism in our home. Security for the unplanned breaks for freedom. Managing surfaces to combat the sensory seeking climbs the numerous laminated words, symbols, instructions and safety reminders strewn around the house. These have all been added slowly as issues have arisen over the last 10 years since we moved in.
When we originally arrived there were walls in different places, we’ve both added and removed external doors. The garden has been made secure and filled with swings, trampolines and yoga balls for Dylan’s sensory needs.
We have locks on the doors, both kitchen and utility to lock people out rather than in. The window in our bedroom is the only one upstairs without a restrictor on it so we have a lock on the outside of our bedroom door. Up high. So Dylan couldnt reach it.
We have restrictors in all windows to prevent Dylan falling out of them. He would spend hours climbing up and sitting on the window ledges and falling was a real risk. All upstairs windows are now bolted to only open with a 2 inch gap for ventilation.
Our kitchen was the only way to access the lounge. Dylan would frequently attempt to open the oven; keen to have his food which he could smell but wasn’t yet ready. It was too much of a risk not to do anything about it so we had to redesign it so that there was alternative safe access to the lounge.
We have double bolts in the access to front garden. Many visiting professionals struggle to work out how to get out once in.
We live on a quiet road but I know that if Dylan gets out alone he’ld head straight to the chip shop on the busy main road a two minute walk away. With no road sense the risks are huge.
Dylan wears an ID wrist strap with his details on and all our neighbours know who Dylan is and that he wouldn’t be out alone.
Our local police officer has a photo of Dylan and he is registered at the station as a vulnerable person so, should he be reported missing, the usual ‘lets sit and see’ time does not apply. Alerts and resources would be sent out immediately to hunt for him.
Where we live our neighbours go that one step further to always keep an eye out for Dylan to ensure he is okay and alway wave good morning to us, ensuring we always feel part of the community.
The prospect of starting all this over as new. Without the time to assess for the need for locks and bolts, contingency plans, building up rapport with neighbours so they don’t mind our constant noisy home. To have to replace all of that feels overwhelming.
A home is more than a house.
It’s a shame we’ve outgrown ours.
Its dark and quiet. Everyone seems asleep then there’s a small whispering voice in the doorway.
Me: ‘Dylan? You okay?‘
Dylan: ‘I waaa doo dah beee’
Dylan: ‘Doo dah’
Dylan: ‘Yah bee’
Me: ‘Of course! Yes you can go to the toilet!’
Dylan scuttles across the hall to the toilet.
He doesn’t have to ask to go to the toilet. He never asks.
Then I think to myself that he doesn’t usually go to the toilet in the night and that maybe he doesn’t feel well.
Me: ‘You okay Dylan? Do you need a wee or a poo?’
Dylan finishes. He gets up and scuttles back to bed.
Me: ‘Goodnight Dylan. Love you.’
I love the little talks we’re starting to have 🙂
Ring a ring o’roses, a pocketful of posies, atishoo, atishoo, all fall down
Traditional English nursery rhyme
Dylan has been really sensory seeking today; requsting his hair tickled and arms and hands to be tickled. Josh and Grace have shared giving him bursts of ‘ring-a-ring-o-roses’ ending with a big armpit tickle. Dylan loves this and will try and share the interaction back to them with his approximations for words and end with a fruatrated tickle.
Today we put the rhyme on the iPad. Sentence by sentence, that way Dylan can choose whether to plan the whole song and play it in one go or he can play it line by line adding more suspense to the game. Dylan prefers this way, he loves the suspense and ends up in fits of giggles before the end of the rhyme 🙂
We spent the rest of this afternoon at the seaside about an hours drive away.
Dylan loves the sea and is instinctively drawn to it. He loves to paddle and watch the waves lap around his feet.
Naturally in the heat of an August weekend the streets were busy and Dylan desperately kept trying to break free from his Dad and I and walk alone in front of us. I know hes 13 but with no road sense or stranger danger awareness he is so vulnerable it terrifies me. I find I have to coerce him back to me with talk of food or one-sided discussions regarding our immediate plans to keep him focused on us and within arms reach as we walk to our destination, preferably away from roads or other dangers.
Dylan has been talking alot throughout the day! It’s still so hard to understand what he’s saying due to his articulation and I feel bad telling him I can’t understand him when he’s clearly trying so hard. But, when reminded, he will use the iPad and hopefully this will continue to grow into more of a natural habit.
But the trying to talk. The eye contact, bringing his face close, the waiting for a look to check that he’s been heard, even being in the same room as us are all such huge leaps in progress for him. These are elements of progress which are so tiny they aren’t even recognised in the neurotypical spectrum sense of communicating.
These are elements of relevance for us, and after all these years they’re finally, *finally* emerging.
Its been a wonderful day.
Today we went out for a long walk.
Dylan led us around the shops and followed a shopping list as a task set by his SLT. The idea was to see how Dylan follows a shopping list as a communication target but to be honest this is something we have been working on anyway.
Dylans speech therapy is very disjointed with the NHS targets being based on targets already achieved through previous work, doesn’t make sense but that’s a whole ‘nother story!
Modelling today included plans for the shopping list. Requesting help with opening a can of drink and using the iPad to request that an activity finishes. Dylan requests this verbally but his articulation is so poor he pleads for ‘finished’ but often no one knows that this is what he is saying. Being able to request that something stops is definitely something that we will continue to model for Dylan to be able to fully be understood.
This is it. We completed 21 days of making effort to model communication and support Dylan use of the iPad.
We’ve used modelling in the last 3 weeks as an experience to discuss cooking, to share books, to ask for help, to explain whats just happened, we have discussed the time of day and made plans for the future as well as reflecting on past events. Modelling has been used to chat about meals eaten, trips out and to partake in family activities.
Dylan has developed his communicative efforts to a wider audience. To relatives, the dog, shop staff, peers; both using the iPad and verbally. He has used the iPad to correctly label items that we haven’t taught. Dylans ABA background has always been very prescriptive; thats how Dylan’s always learned. I feel empowered by the fact that there appears to be a new developing ability to absorb information around him. And I tried to spend a day being nonverbal: The most frustrating, disempowering and vulnerable 4 hours that gave me an insight into Dylans world.
This experince has taught me about the need for space and time so that Dylan is able to make the correct response for him. I am now aware may just be repeating the last word he heard rather than actually making that choice, by giving Dylan adequate time and the iPad he is then able to consider his options and reply to the question or choice without having to find the correct words verbally.
And this whole process, ultimatly, is about giving Dylan a voice.
New words- 10
Total words- 217.
(Thats amazing, 217 new words!!)