Update

It’s been a long year, a lot of things have been happening. Polar Bear has been doing great at school, especially this term. He’s been going swimming at the weekend too which, although it tires him out, has helped him grow his confidence and has a calming effect. We finally received a diagnosis for him too from CAHMS. ASD is the official diagnosis. We decided not to pursue a PDA diagnosis since I knew they’d be unlikely to give us one, coupled with him not having obvious traits so they’d have to have a great understanding of PDA to see it and the fact that we were already so far into the diagnosis run that it would have caused further delay.

So, Polar Bear is officially autistic. This helps the school get more funding for him, which, considering they have already spent a large sum on help for him, can only be a good thing. The school are doing everything they can to help Polar Bear and they’ve recognised that in some ways he doesn’t fit the more typical autistic traits. They have learnt that the usual strategies don’t work for him too and have adapted their techniques to meet his specific needs. For now, an autism diagnosis alone is enough.

We received a report for this term which shows improvements but also shows how, even when things are at their best there are still PDA related issues there, if you know what to look for.

“He has been more able to manage within the classroom this year as he is in a much smaller class. He still becomes upset both on the playground and in class each week, and it is hard for staff to predict when these incidents might happen as the same type of difficulty can have a different response day to day. For example, he could become highly anxious if the wrong chair is at his table one day, but not be bothered the next.”

Break times are usually the hardest because it’s so unpredictable and so much relies on good social skills, many autistics trip up here, so it’s not surprising there are problems at break. Lessons are also hard for PDAers as the number of demands is generally high. The unpredictability of what constitutes a problem on any given day is very common in PDAers. Functioning fluctuates and is affected by anxiety so much that what is a problem one day is manageable the next simply because some days anxiety is high and others low. This isn’t a common problem in autistics, generally what is a problem one day is still a problem the next, although their reaction may vary in intensity.

“He generally indicates to staff that he feels more anxious immediately after breaks and lunchtimes, so it might help to give him a little quiet time before his next lesson.”

It’s good that Polar Bear is showing when he is anxious, this allows the school to see where the problems may be, and they seem to be responding to it in a way that should help. Transitions have always been hard for him but he is getting better at managing them.

“He continues to find it difficult to accept any changes to rules on the playground, even when the other children have discussed them. He does not like not being in charge of games at times.”

Control, especially over games, definitely a PDA trait. Not wanting the rules to change is common in autism, add in a need for control and then you have problems socially.

Polar Bear is making lots of progress and the school seem to be really good at managing his needs. However, now he is in year 5 talk of secondary is looming, this is a difficult transition and we can only hope we do the best to minimise any difficulties. Watch this space.

Monkey, too, has been making progress. I’m still trying to figure out where his difficulties lie and since I’m so used to the autism life it kind of shadowed any differences with his peers that he has so I haven’t noticed them as much. I think it’s highly likely he is autistic and he definitely has sensory issues. I’m thinking what seemed like hyperactive behaviour may have actually been sensory and autism traits, I still have much to learn.

His three and a half year check is coming up. We have been given a check list to go through prior to the appointment. I happily checked Yes to most of the questions, showing that he has met most of his milestones, but I had to leave a couple blank, one asked about walking and jumping up and down stairs. Since we live in a  bungalow and I can’t remember the last time we used stairs I couldn’t actually answer, but since he has no issue jumping off the settee, I think it’s safe to say he can do those things. Another question asked is are we happy with his behaviour. I had to leave that one blank. Why have a Yes/No tick for that? Monkey still isn’t sleeping through the night, although it has improved a lot. He’s also a little monkey who we struggle to manage, so no, I’m not completely happy with his behaviour. Although his nursery have said they don’t have any problems with him. That’s not really much of an indication though, especially when you consider he may be PDA too.

I did have to tick No for is your child toilet trained during the day. Monkey will only go when he wants to go, there’s no forcing him. He will only go for his parents too and so far, at nursery, the most he has done is sat on the toilet once, fully clothed.

I also had to tick No for can people beyond the extended family understand his speech. This after I checked Yes to can he count to 10, match 2/3 colours, talk in simple sentences, join in conversation, ask questions. The boy never stops talking, is great at matching anything and in fact loves to line up pictures and match colours to what’s on the picture. He’s known his numbers for a while and has started to sing the alphabet. But, most people can’t understand what he’s saying. He is very sociable and joins in conversations and starts them all the time, although he doesn’t ask personal questions like what someone’s name is or what they like. Something I noticed both myself and Polar Bear struggle with. He’ll talk about his trains and show you his favourite toys, but he has only recently started saying his own name and age.

Monkey has been seen by SALT, and is due back again for assessing. His speech has improved since they last saw him, but I don’t think it’s enough, especially when you have people saying he’s speaking ‘chinese’ or ‘just making noise’. There are times when what he says is so clear and others like yesterday where he repeated the same words over and over and none of us knew what he was saying. He has such a wide vocabulary yet most people can’t figure out what he says, it must be so hard for him. Luckily his key nursery worker has done a speech and language course and can understand a lot of what he says, hopefully it’ll get better as he gets older.

Ton has had a lot of health problems recently. He has eczema which was pretty bad, it then became infected and he was in a lot of pain. We struggled to get anti-biotics in him, it took nearly half an hour every time, four times a day. He wasn’t eating much or sleeping. The meds gave him diarrhoea which continued when he picked up a nasty bug before the course of meds had finished. Before that cleared up we also found out he was teething. Then he caught a viral infection and he is only now better. His eczema has thankfully cleared up a fair bit but he’s still very itchy and has scratch marks all over his skin where we haven’t managed to stop him scratching despite two of us teaming up to change him and him wearing socks over his hands. It is getting better though. He cut two teeth today but so far he’s coping well.

Sleep is an issue, Ton isn’t getting to sleep until 10pm every night, then he’s up several times during the night. He only has one nap a day too, and here I was hoping he’d be a good sleeper like Polar Bear. We’ve also figured out that he’s allergic to corn flour, of all things. Took a while to find the common ingredient in the foods he was reacting too. At least now we know what foods are safe and which aren’t.

On a positive note, Ton is on his way to taking his first steps. He can walk around all the furniture, getting upset if someone gets in his way, and can stand unassisted for several minutes. It won’t be long before he’s off. He’s fascinated with lights, loves to roll cars and balls around on the floor and has learnt to wave. He also has tantrums when he doesn’t get his way. Proper, throwing himself on the floor and crying tantrums. What age do they usually start this? Pretty sure it’s not at 12 months. At the moment I have to hide my phone from sight as he wants it all the time and tantrums when he can’t have it, but stops when I give in.

Overall, all three boys are doing well. I’m sure any problems will improve, and if not then we’ll deal with them as needed.

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