It’s Easter Sunday and Dylan’s had a good day with a family lunch and after dinner games. Everyone enjoyed the spelling, maths and celebrity guessing games whilst Dylan requested sitting away and watching his favourite programme on the telly. After a while he came and sat back at the table with us so we showed him how to select the correct amount of cards to be placed on the board for each of us to take our turn on the game.
Now I know that Dylan couldn’t give a hoot about how many constanants or vowels we need to play but with support he enjoyed sharing the game with us and seemed happy to have a role within it.
Little efforts were made to promote inclusion; it doesn’t take much.
In previous years, Easter time with its chocolate, change of routine and flurry of bunnies everywhere has never fazed Dylan. Hes barely even noticed it.
This year he has carefully chosen his own chocolate egg and is eagerly eyeing it up in anticipation….
Not long to go.
An overall funny week culminating in a win for Dylan!
He’s been playing badminton for the last 6 months. He started off not even knowing how to hold the racket or able to coordinate hitting the shuttlecock as a serve let alone hitting back a return. But surely over time he has got into the swing of the warm up (which must seem pointlessly running around the perimeter of the courts until he is asked to stop and handed a racket.) He has learnt how to handle the racket and the shuttlecock. He loves the return of the passes and sees it a a pleasant return the shittlecock game rather than a game that he should be striving to win.
Ultimately the sessions end with a light game of which scores are recorded on an app on a phone to try and demonstrate to Dylan when a pass concludes with a point and who ultimately gets the point. Winning is a difficult concept to understand and the scoring or scrutinising elements of the game resulting in the point simple delays Dylan from getting back into the game.
Until this week he’s always lost, happy just to play the game but there no hiding from it; every week, he gets his butt kicked.
Then there was this.
Following a week of ‘No!’ and of disagreements, Dylan plainly telling me ‘No’ when I suggest he uses his IPad so I can understand. He bellowed ‘nuts’ at me throughout a 40 minute car journey to speech therapy as he wanted to divert to the shops before his session. He has well and truly skidded into his teens this week with grunts, disagreements and good old ignoring of us.
It’s been tough but reassuringly typical and I like to think that it’s this fire in his belly that’s got him a win at his beloved badminton.
Dylan loves his dog.
And his dog sure loves him ♥
It’s social worker day.
She’s half hour late so I’ve just rung to check I haven’t got the wrong date or it’s been cancelled.
She answered her phone.
‘Youre not in’ she barked into the phone as I introduced myself.
‘I am’ I say.
I’ve just been to your address and there’s no answer’ and reels off our old address, that we moved from over a year ago and have had social visits at since moving.
‘No, we’ve moved’ I calmly reply and give her our address.
She’s coming back.
I literally cannot wait.
Happy International Women’s Day.
Mothers, sisters, aunts, Nanas.
It was never a dress.
Sitting in a restaurant with Dylan in the midst of the half term rush and bustle.
There’s crying babies, noisy excitable children and the usual hubbub of people enjoying their lunch. Sitting here with Dylan is a marvel. Not do long ago, we used to hide away in holiday time. It was too busy to go out, it was too much for Dylan to cope and we achieved nothing. Dylan became distressed and self injurious, Dad and I felt self conscious and out of control in the glare of stranger’s stares and Josh and Grace well, they were just there being brought up within what felt like isolating chaos.
So to sit here today with Dylan calmly managing the situation (I wouldn’t say he’s enjoying it) is nothing short of amazing.
To be able to go out and eat in public is integration, something that we as a family have strived for for many years. For Dylan to order a refill of his drink, be heard, listened to, acknowledged and addressed, now thats inculsion.
Strike my previous observation; now Dylan’s enjoying it 🙂
Adapting to change is a concept which can be difficult to us all, notoriously to those with autism. This weekend Dylan has made fabulous adaptations and taken it all in his stride.
Saturday we went to Dylan’s usual supermarket. He knows the layout here. He knows where he’s going and we often go there late on a Saturday afternoon so it’s part of our routine. As usual he had a small list of 2-3 items he wanted to buy. He got his own basket and we wander around so he could pick up the bits he wanted to buy. It’s only when he got to pay that he realised he didn’t have his wallet and looked to us to pay for his basket of goods.
Now maybe a few months ago when Dylan was begining to piece together the elements of holding a basket as it got weighed down with purchases or if he was still at the stage of practicing queueing up or navigating the store we would step in and pay, but we’re not, Dylan knows the routine and most importantly he knows that if he wants to buy something then he needs his money.
So I toughened up, we left the queue and went back around the shop returning the items to the shelves. Dylan’s not happy. He held it together and I just keep reminding him; he needs his money if he wants to buy anything.
We get out the shop and back in the car. It’s late and we don’t have time to go back to the shop once he finds his wallet at home. Again he’s not happy but with a clear explanation we manage.
Now tommorrow is a tricky concept so naming the day as Sunday helps Dylan correlate the time frame of how long he has to wait with his daily schedule. After a few minutes of support and reassurance Dylan comfortably understands ‘Sunday is battery and Pringles’.
Fast forward to today and I decide that we will pop round to the small super market around the corner, Dylan’s happy with this and we walk in the rain instead of driving. This is another compromise for Dylan who would always rather take the car for journeys, especially when the weather is bad. But he happily walked.
He adapted to a different shop, grabs a basket and navigates the shop to find his chosen items, paying with his card and we then walk home together. So many changes handled so well.
So easy. Finally.
UPDATE : So we got home to a message on the answer machine, apparently the social worker did not feel comfortable with how our conversation was left and although I have her contact number she wants me to ring her back to discuss. Fearing that I may have ballsed things up with my emotional outburst earlier (because thats how they work – make you feel neurotic) so I rang her back.
Turns out she doesn’t want me to feel negative about our conversation, she isn’t comfortable with that. She insists on arranging a meeting even though she can’t specify why or which assessment or report we need to meet for. I give in, not wanting to appear obstructive and we arrange a date for mid March, I agree to the first date she gives me as available.
‘What time?’ I ask,
‘Well,’ she says ‘Lets make it late afternoon, so I can meet Dylan after he gets home from school, that would be nice.’
‘Erm, time doesn’t matter, Dylans home schooled’
‘Oh? Is he? You have him home with you all day, everyday?’ she questions
‘Maybe we should try and review how much support you’re getting then….’
Dear God give me strength.