February half term saw meltdown after meltdown with G, whilst at Easter in the same place, we saw a much calmer G. Therefore all the family had a more enjoyable experience. Underpinning the specific areas of progress detailed below there was also the small incremental things we put in place across the day to day of the 6-week term.
This broadly included:
- Making a termly calendar with G to see his term visually. It also meant that he could count down to the Easter break, we spoke about the weekend and what it will entail.
- We used PECs sequencing cards (homemade) to discuss any given school day, or change to the week, and we also used them to plan out the weekend break.
- As parents, we immersed ourselves with research reading and watching webinars on how to support a child with a PDA profile (see ‘Our shares’ page on the website for some information on what we delved into).
- G continued his Play Therapy and also had a new class teacher, who communicated more frequently with home, which helped with his day-to-day regulations and work on ‘placing his emotions’ to prevent the angry meltdowns that we have since learned were commonplace at school.
It is all too easy to only see failure when parenting an autistic child and so we wanted to share some positive progress. So, what changed in 6 weeks and how did we identify the successes in a few small areas? We have reflected on 5 moments, which we switched it up for G:
1. Transitioning
In Feb half term we had some (we felt these were low then!) expectations around wearing appropriate clothing (not the coat!!) but wellies instead of crocs, and socks. We were part of an extended family group so there was some external expectation on the family generally to eat at certain times, and be in places at certain times.
At Easter, it was just the 4 of us. We relaxed expectations, we realised swimming twice a day was what G needed. We would go as a 4 in the morning, and try and spend some time together. Then in the afternoon we would split, dad taking G home to decompress and move about the lodge, and I would take H out for an activity, cycle, climbing, park etc. Clothing wise, it was warmer, hurrah, and he rocked swimming costume or PJs the whole time, of course now he wanted to wear wellies and not crocs so we had swim shorts, labels removed, and wellie looks going on for most of the time.
2. Leaving the swimming pool
In February we used upfront contracts, G agreed to these and therefore after 2 hours we expected him to just leave the pool as agreed without a fuss. This strategy didn’t work, and we often left with him kicking and screaming, yelling “you’re all idiots” and going to ground. Not easy to move with a very solid and tall 7year old and a preschooler in tow. Let’s not mention the shame and embarrassment, which we know we should get over, but it does kick in.
At Easter we persevered with upfront contracts, as they do usually help with G; but we developed it further and built in deliberate layers: looking at a clock, explaining “we have 2 hours left” and then doing the same countdown every half hour. We took snacks (Yo-yos and bits of croissant) for him to eat every 20 mins as we passed by a chair near the pool, importantly there was no demand and no question we just held it out nonchalantly and suggested that we didn’t care if he ate it or not, we were literally praying inside please eat them! These snacks were gulped down on the move, this kept his energy levels up and prevented the anger rising. At 2 hours when time was up, we suggested it was time to go, if there was resistance (there always was) we agreed on a new deal, 2 more times down the rapids, and 1 more time on the peace (piste) slide. OK, that’s acceptable. We could also offer that he could go for a night swim later, which helped a lot. Dad took him after their tea, every evening, for an hour (more like 2) but this helped on many fronts from sleep, bribery to of course his enjoyment.
3. Animal communications
In February G had a bad experience with a goose that has since made him scared of all geese. This led to multiple meltdowns and a fixation on them, he often shares his experience at very random times, usually in new situations, which makes me think it is a way of him explaining when he now feels anxious. Despite G loving all animals all the time, we now had this contradiction and visible and loud anxiety at the prospect of more geese in Easter.
So, at Easter, we were intrepid about how it would play out with the geese. When he first saw a standard Canada goose, he was delighted, it helped it was behind a glass door! And he focused on feeding the other animals, the muntjacs, squirrels and coots. All well, until enter stage left the highly territorial Egyptian goose that wanted to eat all of the other animals’ food and was noisy about it. In Feb we would have tried to reassure him and fixated on it. This time we let him explore communicating with the goose and let it draw to its own conclusion. It worked we have some brilliant laugh out loud memories of G squaring up arms out and squawking at the goose, they genuinely communicated well, in the end the goose waddled off and G felt a real sense of achievement. I’m not sure we would have been as relaxed with him exhibiting these animal characteristics in the past, we try and move away from animal noises at the best of times, but recently we have embraced them as his way of communicating and it seems to be working well for him.
4. Bedtime
Bedtimes generally are very long winded and late. We can’t leave him alone due to fears, and dad needs to be with him until he falls asleep. February saw a real battle every evening as we wanted to be with others and yet we had to go through the ‘G-show’ every night.
At Easter, we didn’t insist on a certain time for bed, he had his evening swims and he agreed to go to bed all 3 nights with his door open without anyone there because he could here us, we were close outside, he was so shattered he went to sleep immediately and slept through until 6.30am – unheard of! Of course, swimming for 5 hours a day probably went a long way to success, we certainly have returned to the long-drawn-out process at home sadly, but our flexibility really helped at Easter and our expectations adjusted to fit his.
5. Eating
Usual eating habits for G include dry, beige food on different plates and with no cutlery. Eating out often brings disasters and social humiliations and we don’t attempt it too often. In February we went out for a meal and the reluctance of even walking through the door was impactful, screaming and crying you’d think we were setting him up for a torture chamber not a plateful of pancakes. He opted for plain pasta and watched his ipad, we were relieved whilst slightly on-edge, not the best feeling to have throughout our holiday.
Roll on Easter, we attempted another meal out and again, had the PECs sequencing for the day and the weekend break and booked it directly after swimming. He walked in with glee and had two full courses, omelette and then pancake. He didn’t need his ipad, and played in between curses in the soft play talking to a girl about his favourite arctic animals. Success!
We have already mentioned the importance of snacks throughout swimming times, to prevent the anger from encroaching so quickly. We took a lot of snacks, he ate fruit – with the animals – which was lovely, and it felt like he bathed in nature all weekend, when he wasn’t in the pool of course!
In conclusion, let’s take the wins; there were of course the odd meltdown and then there are the small consistent daily strategies, not just across a weekend break, but for life. From everything we have read recently we agree that the most important thing is that G 100% trusts us. Trusts what we tell him we will do, and always check in with him and if he wants to leave somewhere that we do. We will not trick him or lie to him or put him in uncomfortable experiences to ‘see’ how it goes. In the past we have tried these types of strategies so that we can ‘achieve’ more things as a family and with friends. However, we have recently accepted our limitations and are learning to work with and for G’s regulation, to reduce his anxiety, and build more and more trust in each other as he grows up.
