The Big Trip

Last week I was getting all irate because I couldn’t get LB’s TA to understand the magnitude of LB going on a residential – see Hysterical . I was also worried about how LB himself would cope, following moments of distress and him struggling to sleep.

After that, things improved a bit, seemingly because they’d spoken more about the details of the trip in school, resulting in LB realising they weren’t in fact camping out in tents. The idea that they were must have been worrying him because he did settle when he realised they weren’t. I have no idea where he got that idea from in the first place – it just goes to show that not all worries are predictable.

I didn’t press any issues with school because things seemed to be ok.

The night before the trip, LB grew anxious again. He really struggled to get to sleep and got himself in quite a state. He was worried about “missing us too much”. The next morning, we woke to him to him crying and shouting the house down. It was such a shame to hear because it isn’t like him to get so distressed.

LB came into bed for a cuddle and soon rallied. He started doing my make up while I was still half-asleep and, despite, or perhaps due to me looking a state, it cheered him up considerably.

When BB got up, he did a fabulous job of encouraging LB – telling him that he was nervous when he went on the trip too but that all his friends would be there and it’d be ok. He is so instinctive that boy, it really does make my parenting job easier.

It was almost as though once LB got his head straight that he wanted to go and that it would be fun, even if he was nervous, he just focussed himself on getting ready. Soon we were at school, amongst a throng of similarly excited children and LB was fine. He didn’t struggle to separate at all (as I thought he might have) and went right on in.

I had a quick word with the TA and impressed upon her the importance of calling me, should he need her to. I could see her reluctance, but ensured I got my point across.

 

It was a very strange evening at home, that night. It was so quiet. And so tidy. And something was palpably missing.

Our thoughts were not far from LB all evening. I checked my watch every ten minutes, trying to think what he’d be doing at each point. I was surprised by how much BB worried about him – he too wondered aloud about him much more frequently than he would if he had been staying with grandparents, for example. We all knew this was a huge deal and could have gone any which way.

From about 8pm onwards, I kept thinking my phone would ring any second. But it didn’t.

I kept checking the school Facebook feed but it hadn’t been updated since 4pm so that revealed nothing.

By about 10pm, I figured it was safe to take my shoes off and have a cup of tea, whilst simultaneously wondering if they would call the second I sat down.

But they didn’t. It seemed unlikely they’d call during the night so I assumed this was us: he was really doing it. It would have been really appreciated had someone taken a couple of seconds to send me a message saying he was fine, but that didn’t materialise either. I half thought, due to them having me down as mildly hysterical and neurotic, that they would have sensed the need for such a message. But there we go.

 

By school pick up time yesterday, I was very keen to get him back again. I had half envisaged him running out of the classroom door to be swung into a swirling hug, but, this being LB, our reunion was a lot more nonchalant. I had forgotten that we’d probably get a bit of the cold shoulder because we had been separated for twenty-four hours. That’s always the way of it. But, in the grand scheme of things, it was ok. He didn’t hate us, he was just a bit quiet and standoffish.

He was also, what Gary would technically describe as, “dead dog tired.”

It happened to be parents evening, so between the information LB shared, the chats I had with his teachers and accusations made by random children in his class, I managed to piece together an accurate-enough account of what actually went down. I think he enjoyed it overall. Apparently at teatime on the first day, LB began to droop and asked to go to bed. He does go to bed early and his body is very much ruled by a strong circadian rhythm, and affected by not sticking to it. The staff jollied him along because they hadn’t done the bonfire and marshmallows yet. LB managed to power through but then, obviously, went beyond tired and by the sounds of it, struggled to get to sleep. I suspect there was a degree of high jinks. However, I’d rather that than him be upset and crying for us. And, according to his TA, “all the boys were a nightmare for bed.” And, well, I did warn them.

I suspect the second day was trickier – LB was tired and no doubt struggling with regulation. But, he came back in one piece and so did all the staff.

I think this is a probably a time where I don’t need to worry about the details too much – instead focussing on the bigger picture. That picture is that LB, at seven years old, with a history of neglect and trauma, has managed his first residential, without any significant ill-effects. What a guy.

I thought he’d have been fast asleep early last night, but no. I suspect if there are any lasting effects, it will be tricky bedtimes for a few days, while he re-adjusts and maybe a dysregulated weekend – no big deal.

I hope that him going away and us still being here when he came back is powerful for him. We all told him how much we missed him and how weird the house was without him. We told him how proud we are of him for managing it. I hope it’s another step forward with his attachments, and with his self-confidence too.

LB might be the smallest member of our household but my goodness he’s a big presence. Even when he’s asleep, the house feels fuller and more complete when he’s in it. I think the trip gave us all a strange vision of what life would be like without him. It would undoubtedly be tidier – the tornado of discarded clothes and toys notably missing; quieter and calmer. But, jeez, it’d be boring. Who wants sedate when you could have exuberant, unpredictable and hilarious? I know which I’d choose, and there’s no contest.

 

Addition – Saturday

As you can tell from the above, I thought we’d survived and were kind of okay.  I didn’t anticipate that I would be called into school on Friday evening, faced with teachers who were surprised at LB’s lack of ability to control himself and have a smiley face chart waved under my nose as a supposed cure-all.

I actually despair.

Surely it is not that difficult to attribute dysregulated behaviour the day after a trip, to the trip? Surely, it should have been obvious to all that Friday would be a very tricky school day? Surely, or so we naively imagined, the demands and expectations would be reduced accordingly, to accommodate LB’s temporarily reduced window of tolerance? Surely?

Err, it would seem not.

Instead there was outrage that LB wouldn’t do what was asked of him and that he was rude to some teachers. We just cannot accept this behaviour, there have to be consequences.

Groan.

Then, without consulting any of the members of staff who know him best, and without reading any of LB’s paperwork, two members of the senior leadership team thought they knew how to sort him out. A smiley face chart. Seriously. I think they actually thought I’d be pleased with this new fangled invention.

I’m just so frustrated that every time we think we’re there; that school understand LB’s needs and how to support him, something like this happens to suggest the polar opposite.

Grizzly and I now feel we shouldn’t have let him go on the trip. School clearly aren’t able to accommodate and support his needs properly when dysregulated. They can’t even recognise that he is dysregulated. Essentially, they can’t keep him safe. And if that’s the case, they can’t take him on any trips. Its so frustrating because I told them and I told them, but they thought I was exaggerating. Then when the behaviour we predicted does occur, they think its nothing to do with the trip, it’s him getting spontaneously extra naughty. Not my words – how I imagine they think of it.

I could scream.

And while I’m ranting, getting dragged into school means my children are left in the playground, to their own devices, which is clearly unwise for LB. I’m discussing his behaviour while he’s given further opportunity to misbehave.

It is exhausting being a parent of a child with behaviour needs – not because of their needs – but because schools just cannot wrap their heads around them, despite training and meetings and about a gazillion discussions. The patience of a saint is required and mine is running out.

 

 

 

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Speech & Language & School

Although Little Bear is making progress with his speech and language skills all the time, I continue to have concerns about this area of his development. I think him being in school has made some things more noticeable. The fact that he is now away from me for long periods of time, in which I have no idea what he has been up to, sometimes leads to difficulties. I know a lot of children don’t like talking about their school day but I think Little Bear is often keen to share the things he has been up to but unfortunately he frequently still doesn’t have the language skills to be able to. I have to rely on things like the Facebook updates his class teacher posts or things other parents mention. If I have a starting point, Little Bear can then usually tell me something.

There are things that happen that he just can’t explain e.g. when he injured his eye at school requiring a trip to hospital, he couldn’t tell us how the injury had come about or why his eyelid was bleeding. We had to rely on another child’s account to get to the bottom of it.

There continue to be situations when I can’t understand what he’s trying to say to me and strangers certainly struggle. Thankfully his teachers seemed to have tuned in pretty quickly but I think there have been some communication breakdowns with his peers. They seem to be going through that phase where they tell each other that they can’t play or they won’t be inviting you to their party. It’s typical 4 year old stuff but Little Bear is at a disadvantage because he struggles to negotiate verbally. Where others might argue back or try to be persuasive, Little Bear has already used up his best attempt at joining in by saying “can I play?” If he is then rebuffed, his hurt feelings and lack of any other options still lead to a physical response now and again.

Little Bear is good at persevering when we don’t understand him now but he understandably gets frustrated when he has tried and tried and still can’t get us to. Sometimes his attempts at words are nothing like the target word so it can take a long time (even several days) to figure out what he means e.g. we finally worked out that “boarbuh” is actually ‘Paw Patrol’. He struggles to imitate words accurately so even though we have been tapping out the syllables for him and modelling each bit clearly, he can’t copy them in any recognisable way. Equally I used the word ‘soggy’ to describe a wet cardboard box. Little Bear already knew ‘foggy’ and now thinks that is both weather and a wet cardboard box. I just can’t get him to hear or mark the difference.

This morning I said to him “I’m not sure about swimming today, you sound quite husky”. Little Bear then said to his Dad “I can’t go swimming, I’m too whisky”.

There is definitely something going awry with his speech processing system. This system helps you to analyse the words that you hear, figure out what sounds they have in them, in what order, how many syllables etc. Your brain should then store the word accurately and send instructions to your mouth muscles of what sounds you need and how to make them whenever you want to say the word. Things can go wrong at any point in that process and I suspect there might be more than one problem with Little Bear’s speech processing.

However, all the phonics work that is happening at school is brilliant and will help with his speech development too. He has continued to surpass expectations by learning all the letter shapes/ sound correspondences in phase 2 phonics in the first half term. At school and home we are both focussing on helping him to hear and identify the first sound in words e.g. sun starts with s. This will be essential because it is all well and good knowing the letter shapes but he will not be able to read if he cannot break words down into their individual sounds and then stick those sounds together to make words. At the moment if you try to get him to blend sounds, he just can’t. You might say “c-a-t” and he’ll say “banana”. Blending is a very difficult skill so we will aim for identifying first sounds to start with and go from there.

We have made progress with the auditory memory side of things too and Little Bear is finally able to count! He can get to 5 reliably and to 10 with a little bit of prompting. The best thing about it has been his motivation to keep trying and his determination to succeed with it. He has a very similar attitude to learning his phonics.

When he first started bringing books home to read I got a little concerned. Obviously he is not expected to read words yet so he brings the picture books where you are meant to talk about what’s happening in the pictures. To begin with it was a disaster as he just didn’t get the concept of describing what he saw. I honestly felt it would have been easier to teach him to sight read a word. However, we persevered. I would get him to tell me whatever he could, usually just one word. I would then put that word into a sentence and model it for him. I used questions such as ‘who’ ‘what’s happening’ and ‘where’ to help him give the key information, then I could formulate the sentence for him e.g. Me: “who’s in the picture?” LB: pig Me: “Yeah, what’s the pig doing?” LB: “jumping” Me: “He is jumping. Where is he?” LB: “bed” Me: “Good, the pig is jumping on the bed”.

We continued like that, painfully, page by page, for some time. I assume that’s what happened when he read to his teacher too. He has done brilliantly though and now attempts a sentence for most pages most of the time. There might be some little words missing but he makes a good attempt.

I really noticed his progress when he had his first NHS Speech and Language Therapy appointment last week. The therapist assessed him using a picture description task. When he started giving answers such as “the man is riding a horse and the horse is jumping over the fence” I knew she probably wouldn’t be as concerned about him as I felt she should be or as she would have been had he been seen sooner.

Unfortunately it has taken 8 months and them cancelling 4 appointments for us to finally get an assessment. I didn’t find it a particularly fun experience, mainly because I wanted to be able to attend the sessions with my parent hat on, not my Speech and Language Therapist hat but when I walked in the first thing she said was “so you’re a Speech and Language Therapist I believe?”. Someone had helpfully written it on the referral form… Little Bear was also having some sort of regressive behaviour moment and suffice it to say that it was stressful to manage him with a professional looking on.

Either way, he is now in the system and will be attending for regular therapy soon. I’m not loving the idea of having to take him out of school for it and I don’t think he is either, judging by the size of the meltdown that took place when I tried to get him back to school after the first appointment. However, I know that school will carry out any programmes given to them and we have been talking about his Pupil Premium funding and whether any of that could be used to provide speech and language input that is more integrated with his education.

We are continuing to scale the word mountain that I talked about in Living with Speech and Language Difficulties. We are getting there, word by word, syllable by syllable. I don’t think the pinnacle is in sight yet but we continue to climb and that is the best we can ask.