R had a bit of a stressful Saturday morning as we went to a few places to get shopping. Nonetheless he was really well behaved as I now know all the signs of him stressing and take action to alleviate anxiety.

Sarnia de la Mare FRSA
Artist • Composer • Educator
Sarnia is a multidisciplinary artist and founder of Tale Teller Club and Blink Friction. Their immersive work blends art, sound, and story—exploring identity, transformation, and the beauty of otherness. Sarnia is an advocate of autism and ADHD acceptance and founded the Autism Caravan to raise funds and encourage inclusivity for neurodivergent people around the world.
As a Fellow of the Royal Society of Arts and founder of the Sarnia de la Maré Academy of Arts, they empower creatives to think radically and create fearlessly.
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Showing posts with label autism journal. Show all posts
Showing posts with label autism journal. Show all posts
Sunday, June 15, 2025
An autism weekend #autismdiary with Sarnia de la Maré FRSA
He has become quite attached to me and wants to be in close proximity. We popped into a cafe for a hot chocolate but it was noisy, as was town, and R was really gnawing his nails. He couldn't log on to play his game on his tablet so we decided to go home as soon as possible.
We had our food voucher from social services so went to buy a new toothbrush and paste which Romeo chose. He likes the 9-12 year old paste and he chose a snazzy monochrome electric brush. We talked about cleaning his teeth that night but R still takes a great deal of persuasion and so he declined. We make deals and pinky promises but they usually slip and I do not pressure him.
R did however have two nice strip washes with a big bowl of water and a Vivienne Westwood soft designer flannel, which he likes. He seems to prefer this to bathing and is of the opinion that one bath a week is sufficient.
As the weather is muggy the strip washes cool him down and I think they are fun for him.
He has managed to clean his teeth once and I gave him a lot of encouragement and told him his teeth sparkled.
We were much more relaxed at home and Romeo settled. He went to bed around 6pm.
He has started to eat less, leaving food and asking me to leave only one peanut butter sandwich for when he wakes instead of two. I think he may have lost a pound or two since he has been here. He has realised I do not fry anything and was not impressed. But his panic at not having food around seems less obvious now. I never deny him food and this seems to be paying off. I also promised him I will never let him go without food as a punishment.
I do not tell him anything negative about his weight, I tell him he is beautiful and perfect.
I have started watering down his apple juice, using skimmed milk, light drinking chocolate and other sneaky grandma tactics.
He has sussed when I try to do maths things, and says he knows what I am up to. I tried to discuss even and odd numbers and he answered a question then look quizzically saying 'I am not doing maths things.' We laughed about it.
R likes me to go in his room and hang out for an odd half hour. I wrote his name on my iPad and showed him some digital colouring techniques which he was interested in. He said the R was like the logo for one of his games and he found an image of it on Google before I could even type it in the search box.
He is very computer savvy. He told me he was regularly on a stranger meeting site online which I looked up on Google (Omegle) and it seems to be quite dangerous. There is no age verification and a lot of adult material and grooming. I spoke to R about never showing his face or body online and he said he would never do that.
R woke at 2.15am. We were both thrilled that he had slept so late and we think he may be back to normal soon.
Sunday was a gentle day with no stress and lots of chilling. R left half a bowl of porridge and I think his appetite is regulating along with his sleep pattern.
R did not like me not being able to hear him when he called as I was editing music with headphones on. He asked that I have one ear free at all times. R calls me a lot, mostly to take his tray away after food, but also, everything else. He has started to venture out of his room more and is happy to jump in the car now to get things we need.
This is a marked difference from last week. He seems happy and content. He is expecting to come and stay for extended periods in the future and assumes it is his new normal. He has not mentioned going home but I have told him that we will find out more details on Friday and be able to make more concrete plans.
Sarnia de la Maré FRSA, MDes, PGDipMus, BAHons
Friday, June 13, 2025
An Autism Journal by Sarnia de la Maré
Today R was relaxed and comfortable. He woke at 1 am and woke me for his peanut butter sandwiches which I had forgotten to prepare.
I went back to bed and R stayed up playing Playstation. He knows to wake me at 6am which he did precisely. R is very punctual in this regard and reads time well. I am also really pleased that He keeps the volume of the TV on number 8 while myself and neighbours are asleep. This is a show of respect and understanding that was not evident when R first arrived. I always make a big point of saying how amazing he is to do that and I believe he likes to be praised in this way.
Friday is pocket money day and we had to put in my debit card details online, which I normally do for him. But today I said R should do it (so I could assess his number confidence etc.) He completed quite a complex task with the card details really well and was praised. I have noticed that he is gaining confidence in these literary and numerical processes and that he is enjoying his success.
Later, after two cooked breakfasts, we made a deal to get a fizzy drink if he strip washed and cleaned his teeth. He quite enjoyed the strip wash which involved a basin of water and a flannel which I took into his room for him to do himself.
I have noticed R is itching his head a lot and I have told him a wash and brush would stop that. So far I have only mooted the idea as the prospect of either is not appealing.
When we were out we had a short walk. I noticed R stims when anxious and he was really gnawing at his nails as we walked. When I slowed right down he stopped gnawing. So in future I will walk really slowly at his pace and I will talk in a less rushed tone. I am normally charging around but I think this may have worried him in the past.
Back home R decided he didn't want to buy the fizzy drink in question as it was bad for him. I think it made him feel sick and as he is a worrier my warnings to that end had made him consider future choices. We had a discussion about him making his own decisions and how important that was for him which may have gone over his head, I couldn't say, but I like to do these conversions just in case.
I have bought R a second hand Nike hoodie as his one from home was covered in white paint. He likes Nike but prefers Adidas. I bought him 7 pairs of new socks as his were too small.
R is aware that a social services meeting occurred this morning. I felt he was anxious during the meeting as he was asking for food. When the meeting was over I asked how he would feel about staying weekends with N's sister but he said it would depend on which one and he was unsure. He said he just wanted to go home. I explained that we will know more next week. I did feel R was anxious once again so tried not to overload or confuse him further.
Finally around 5pm R began to tire. We decided that this week we could make a podcast with my AI robot reading a spooky story that he wrote. He would tell me the plot and I would write it. He wants all the money if it goes viral on YouTube and I agreed.
R fell asleep straight after and I promised there would be two peanut butter sandwiches in baco-foil (not clingfilm) and the bright light turned on (not the blue autism nightlight) on his bedside table. He will wake me at 6am for his cooked breakfast of beans, 3 hash browns, and two eggs.
Today was a great day with lots of milestones.
#autismcaravan
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