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Connecting

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

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Buttons and generalising skills

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! 🙂

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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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Holding hands and praying for a green man 

Roads.

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”.

And breathe. 

Thanks Josh x

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Parenting win #448

I took the kids shopping last week when usually its Dad who takes them. 

Dylan made me turn back down the beer aisle and pick up a 4 pack. I had to take this pic and ask Dad “Do you usually buy these? Dylan has picked them up and put them in the trolley”. 

Turns out he does indeed buy that brand of beer. Parenting win for Dad! Go Dylan!! 😂😂

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Holiday Prep

Travelling can be stressful at the best of times. Add on the possibility of delays, an unusual environment and lots of queuing  (see previous post) on an annual daily holiday could be an autism recipe for disaster.

Dylan has always travelled. Even from his toddler years pre diagnosis we would pack him and all of his necessities and have a yearly holiday abroad. Sometimes it was good. Sometimes not so. But we would persevere.

‘Preparation is key’ is a mantra I have learnt to live by over the years. The holiday preparation begins about 4 weeks before we leave and isn’t anything too involved but is just enough to help Dylan get through it. In recent weeks I have had messages asking for advice from others with young children with autism. Its taken me years to gather these nuggets of advice and I’m more than happy to share.

Holiday countdown– We have a laminated A5 sheet which has a grid on it. Like a calender; it has the weeks leading up to holiday, the time we have away and a few days after our return. Everyday, often prompted we get Dylan to tick off the day with a permanent marker. 

We do this everyday right up to the day we leave. The grid is something that we take away with us and continue to tick off the days. The day we depart and come home are highlighted on the grid to help give Dylan a concept of time for before, during and after our holiday. We had a hard year a few years ago where Dylan would spontaneously burst into tears. His communication was much more difficult then and we really had to guess what was wrong or how we could help. We guessed that the whole situation was just too much; one day being hauled out of bed, put on a plane to a hot country and not knowing when or if you would ever go home. We also used to refer to the holiday apartment as home whilst we were out and about abroad “Right Dylan we’ve finished at the beach now so we’re going to go home” before we would go back to the apartment. To have this described as home when it’s not the UK home must be really confusing so we refer to where we sleep on holiday as ‘the hotel’ or ‘the room’ to make a clearer definition between the two places.

Swimming aids– Dylan still can’t swim but lives on holiday to be in the pool. Josh and Grace are both proficient swimmers and so will jump and dive into deeper waters. Dylan loves to follow suit which poses a real risk. Swimming aids can be really tough to find as Dylan gets older. Kids armbands pinch his arms and he has so little stability or strength in his arms the he struggles to keep up with them as they float. A year or two ago we brought him a swimming vest which goes up to age 14. It’s a snug fit this year and we will have to find a replacement for the next holiday. He knows he has to wear this to swim, so after a gentle reminder he will go and pop it on before swimming. It’s an obvious sign as well to those unfamiliar with Dylan that he can’t swim and despite his size he may not be appropriate for the usual boisterous water games played by boys of his age.

Marmite, ryvitas and random foods – At home we naturally stockpile items, usually food, y’know in case of a manufacturing delay or some sort of freak weather that means there may be a national shortage of steak McCoy crisps.

Its not the end if the world if there’s no ryvitas at our holiday destination but it sure makes things easier for Dylan to start the day the right way with as close as possible to his usual breakfast of cherry tomatoes, ryvitas, marmite and a large cup of tea. 

Taking extra foods can be difficult if you are not taking hold luggage. Containers must be under 100mls to go through customs in hand luggage. Marmite seems to come in 125mg jars in Uk stores and so won’t be accepted in hand luggage. I even argued with the man that Marmite is not a fluid but the customs officer wasn’t having any of it and I had to get rid.

If traveling from a large airport you can usually buy larger items in the shops once through security. We found a 100ml jar of Marmite in Boots of all places at Gatwick airport. A great find after that sinking feeling of watchng your child’s planned meal’s for the week be considered contraband.

Laminated iPad– Dylans main mode of communication is his iPad and although there’s a lot of waterproof iPad covers available i don’t really want to risk breaking it by having it in the pool. So to overcome this we have screenshots of Dylan’s main pages which are laminated and can then either go in the pool with him or stay on the poolside within the area that would be the danger zone for the ipad. 

This is the first year we have done this, I saw it on a speech and language forum as an option for facilitating communication during those time of sharing moments or making requests in a highly motivating situation.

In addition to this we have produced extra vocabulary on the iPad to help with the new words that will become more useful over the next couple of weeks. Words like beach, suncream and cocktails are not usually required in our leafy hometown so we have these words ready to support Dylan’s transition into his new environment. 

Social stories – In new situations or on holiday the usual reassurance of rules and routines is lost; everyone stays up later, we eat at different times and although enjoyable for most it can be a little unsettling if you rely on routine for familiarity. There are also rules which may not be broken, road safety and pool safety are important and need to be adhered to and a social story can support the verbal message being given. Dylan has an app on his iPad ‘Pictello’ which is really simple to use and Dylan can rewatch the stories to reaffirm the message if he needs to. But social stories don’t have to be hi-tech. Social stories can be made on paper and as the information within them as involved or simple as you or your child needs. Last year we made a social story to help Dylan understand why he couldn’t go swimming straight after eating. We are using it again this year.

Extra straws and comforters – Dylan has hierarchy of straw and their acceptable standards. The straw should be new and barely used. McDonald’s do the best gold standard straws. Other straws are acceptable but the is a fine line between a really used worn McDonald’s straw and one which is in better condition but from a different vendor and only Dylan can make that decision. When these decisions are too difficult we go to McDonald’s and get a new straw. We can’t do that while we are away so we gather a stock of them over time to take away with us which can be brought out one by one as Dylan needs them. Never be caught short without a comforter!

Packing list and discussion about clothes. – Josh and Grace pack for themselves whereas Dylan needs to have his bag packed for him. Dylan is involved in this but often picks up a hoody or tracky bottoms when asked what he would like to wear. Options are given but unwise choices are gently overruled for more tropical-friendly alternatives. 

We talk about how the weather may be different and what we need to take. Holiday shopping such as aftersun and snacks are brought together to help Dylan visualise the future coming event we are talking about. It takes time but doing these things together in the weeks leading make the idea of holiday (which is a really abstract concept) into more of a concrete reality.

Letter of diagnosis – I always take a dog eared old copy of a letter confirming Dylan’s diagnosis just in case. In case of what? In case he melts down, in case of disruptive or socially unacceptable behaviours, in case we find ourselves in a situation where autism can explain it but I need to prove it. Dylan looks totally normal. When I hold his hand in a busy airport, he’s nearly as tall as me and he’s telling me ‘non’ as he wants to go running off to stim at the disappearing steps at the bottom of a packed escalator. It would be totally acceptable for a well meaning member of the public to intercept to ask me what I’m doing holding onto him so tight. Why don’t I let go like he’s telling me to.  That he’s old enough to know what he wants to do and I should respect that. 

This has never happened. But it could and I could need to prove that I am not being abusive but trying to protect Dylan. A high anxiety area such as an airport could exacerbate Dylan’s behaviours or our responses to them. Dylan letter of diagnosis is our only proof.

Airport assistance – Larger UK airports Gatwick, Manchester and Glasgow have all changed practices to offer support to those with autism travelling with them. It’s worth checking with both the airport and the airline to see what assistance they can offer. Gatwick have a lanyard with small sunflowers on it that can be collected from their assistance desk and it is instantly recognisable to all staff yet discreet enough to not be noticed by anyone else. Its use certainly made a difference to our journey this time and it’s worth looking into. I would thoroughly recommend it. 

Preparation is a necessity and it can make travelling with autism possible and great fun. Parental relaxation, switching off and reduced anxiety is not guaranteed but at least you have a change of scenery.

Think of it as a busmans holiday 🙂