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!!)
A day spent at Woburn Safari park. Plenty of opportunities for modelling, observing and commenting. We spent the day in the car which was frustrating at times for Dylan. It’s not always appropriate to model during these times but the closed environment meant that Dylan could focus on the iPad without the sensory overload of the crowd, attractions and other distractions which can be such a barrier to Dylan’s ability to communicate.
We went around the park twice in the car before getting out to stretch our legs. As suspected Dylan found the bustle hard and needed his ear defenders on for that added bit of security against the overwhelming noise and excitement from those around him.
Dylan is 13; he doesn’t look like an unruly toddler. We have now approached the age and height that makes it clear that Dylan is different. People move out of his way and apologise that way you would if you got in the way of a wheelchair user. That’s fine, I think it means that I can focus on what Dylan needs and how he’s doing instead of worrying about the opinions of those around us as I have done previously. Lets face it – no one has given us disapproving looks for many years, the looks are more of sympathy or people simply don’t look – like they don’t make eye contact at all.
Maybe its me; maybe I’ve stopped giving a s**t.
Anyhow, as we were at the park and after being sat in the car for a while Dylan *obviously* wanted an ice cream. I went with him to the list of ice creams at the stall so he could see what was available and then ensured that the ice cream of choice was programmed into his iPad ready for him. We queued patiently together until it was our turn and Dylan approached the kiosk and with minimal prompting used his iPad to ask for 3 ice creams.
It was busy and there was a queue forming behind us but the two lovely girls at the stall interacted directly with Dylan, looked at him, waited patiently for him to get his money out to pay and addressed his slow but accurate ‘thank you’ as he put his change back into his wallet. It was beautiful to watch as Dylan strode purposefully away from the kiosk with ice lollies for himself, Josh and Grace.
Tomorrow is day 21 and I’m going to miss this. I’m sure that the pattern of modelling is now engrained in the way we work with Dylan and the iPad but I’m going to miss the recording of it. Looking over the last 3 weeks Dylan has had so many positive interactions and developments which would have been lost in the day to day bustle had I not recorded them on a daily basis.
New words – 22
Total words – 207
A sunny day today so we took advantage of it and had a mammoth 3 hour trip to the park.
Kids were out everywhere making the most of the August sunshine.
Dylan generated a lot of attention with his IPad. Some people seemed genuinely aghast that Dylan uses it to speak.
Josh saw some kids that he went to school with previously before moving schools a couple of years ago. They remembered Dylan from the playground at school pick up time even though Josh was at school with them probably over 3 years ago.
They were so happy that Dylan was finally able to communicate and asked him loads of questions. Dylan began to get flustered at all the attention and Josh recognising this quickly redirected them to an inclusive game of football.
Dylans much happier interacting with people from afar and knows whats expected from him when a ball is kicked in his direction.
We stayed at the park for hours before heading over to the shops for bits for tomorrow lunch. Dylan used the Ipad to talk about where we were going and was really pleased to be heading out for food, even if it’s not going to be eaten till tomorrow!
Football’s great but it doesn’t have a patch on food!
New words- 16
Total words- 185
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. 🙂
New words- 24
Total words- 169