Source: JOSH WILLS – MISSING
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.
Sometimes nuggets of compassion from strangers catches you right in the feels.
It could be a throwaway comment, a glance and a smile or a gentle nod of ‘I get you’ before the moment passes and the crossing of paths continue.
Although few and far between these moments can give you a spur onwards when tiring from the ongoing effort of managing family life and the relentless need for continuity while offering encouragement during noisy, disruptive times when it can all feel a bit too much.
A look of support, a kind word or just ‘seeing us’ when out as a family can give us enough of a boost that sometimes we can feel supported without even interacting with anyone.
The truth is that the differences of having a child with disabilities to a family is immense and can make some of the most basic public tasks feel impossible.
While away at the beach Dylan screamed, cackled and splashed, immersed in his deep deep joy of the sea and finding a common ground enjoying the warm water with his siblings.
Josh came over to me on the waters edge and whispered to me “Mum, look; everyone’s looking” I turned to see everyone sitting upright on their lounges watching Dylans show. Josh and I smiled to each other as he rushed off to go back to play with his sister and noisy brother.
Those watching may have been judging his behaviour or disapproving of the disruption to their quiet sunbathing but it felt to me as if they were enjoying watching them have fun as much as I was.
To those who spread little gestures of kindness, thankyou. Thankyou for recognising and spreading understanding for families like mine.
Acceptance feels beautiful. Thankyou x
Education authority bods say:
“See the thing with ABA is you can teach all these skills but they are worthless as they can never be generalised outside of the classroom.”
Doubters please meet ‘doing up button’s,’ taught using ABA methodology and currently going international! 🙂
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.
Difficult to navigate with lots going on, traffic in both directions, potential danger everywhere AND a journey to complete.
Dylan had been working hard at home on crossing the road and adhering to road safety in an effort to increase independence with slow but steady progress.
I can walk along the pavements with him and I don’t need to request that he holds hands with me anymore. He often just links arms with me for stability, Dylan tires so easily when walking, and knows when we approach the kerb that he needs to hold hands, stop at the edge of the road and await either verbal instruction or discussion about our surroundings and how we can complete this crossing safely.
Now we are in Greece the rules have changed. We have a 20 minute walk from the hotel to the beach. The traffic is fast and flows on the opposite side of the road. There is a large volume of noisy older cars and scooters and an absence of pavements. There is literally a fainted partially painted line approximately half a meter from the edge of the road. This indicates where the walkway finishes and the busy road starts. The difference between Greek and UK roads is huge.
We have visited Greece for our holidays for the last 4 years so we are accustomed to the differences. Dylan manages this well usually.
This time round with the teenage defiance, agitation brought on by the blistering heat and non stop sweaty hands Dylan refuses to hold hands; absolutely point blank at times. It’s exasperating and terrifying just like when he was 6 or 7 and we could compromise by having him hold onto Graces pushchair. Today we have nothing but empty pleas and trying to hurry the situation along, frantically trying to avoid a catastrophe.
Not having the safety net of Graces pushchair I’m increasingly panicking until Josh calmly steps in.
“Mum, let me try.
C’mon Dylan lets get out the sun”.
Thanks Josh x