The Right Eyes

Today, Little Bear has been seen by another psychologist. This came about because the last time we saw an Educational Psychologist, I became very irate and had to resist the strong urge to tell him he didn’t know his arse from his elbow. You may remember this ranty post which tells you all about it: Conversations

Thankfully, the Bear’s school were none too impressed either and volunteered to pay for a private psychologist to ensure a non-biased, useful report. I know that I have moaned at times, about the school, but things have come a long way. I feel a real gratitude towards them that they genuinely care, about Little Bear and us, and that they are willing to be creative and do things differently if that’s what’s required. In these times of dwindling budgets, I’m well aware that many schools wouldn’t have funded such an assessment.

It isn’t just that, but by inviting a knowledgeable stranger into the school, they were laying themselves bare to observation and potential criticism. They took that risk because they want to do the best they can for our son and they are willing to make changes to their practice if advised. There is something about us having these shared vulnerabilities and this shared desire to ensure he reaches his full potential and is as happy as he can be, that makes me a little emotional. I think (I hope) that we have reached that much longed for status of Having A Good Working Relationship. And also Mutual Respect. I hope so, because I do feel like giving them a collective hug.

So, having got the right professional across the threshold, how was it?

Other than the times someone from our post-adoption support service has come into school meetings, this was the first time that somebody with an evident knowledge of trauma and attachment has observed Little Bear and seen what I see. There is a palpable relief in that. It isn’t in my mind; I haven’t concocted his needs; I’m not exaggerating. A knowledgeable stranger has come in and is sitting at the table I have sat at many times before and is observing things and recommending things that I have previously talked about, at that very table. She’s more convincing than me because she’s a psychologist and she certainly couldn’t be accused of being a neurotic mother, but even so, it makes me feel a little vindicated.

It’s refreshing. It’s also reassuring and hopeful. It means that instead of things being okay for Little Bear, maybe there is hope of them being the best they could be. I probably haven’t aimed that high for a while – just hoping we could avoid abject failure. School are willing and keen and they like the Psychologist and she is passionate and full of useful ideas. Surely this is the most hopeful our status has been so far?

I complained in my blog about the incompetent Ed Psych, that I knew more about trauma than he did and I’m sure that’s true. (Incidentally, today’s Psychologist said almost the polar opposite of everything he said. One has to laugh). I’ve written about  Being an Expert Parent and how our children necessitate us being so. I have always been a little reluctant about it though, so when a professional appears who is undoubtedly more knowledgeable than me and more experienced than me and I can learn from them, it’s brilliant. There is a surprising relief in it, that allows me to relax a bit, so I can attend the meeting as a Mum, not some sort of parent/professional hybrid trying to do several things at once. It makes me realise how exhausting navigating such meetings can be and how much of my emotional energy is eaten up week to week, trying to make sure Little Bear has what he needs in every area of his life, unwittingly filling the gaps left by others lacking in knowledge. Perhaps I can relax a little about his education now because between the psychologist and the school, I think they’ve got this.

It also highlights how rarely I’m in a situation with a professional who is knowledgeable enough to give advice about Little Bear’s needs. This shouldn’t be the case – that a professional who is trauma-informed is a rarity. Any professional coming to advise on children with developmental trauma should be suitably trained and aware. It is wrong that we find ourselves in a situation where the only way of getting that expertise is to pay for it, especially as childhood trauma is so prevalent.

Anyhow, with the right eyes on Little Bear, what did we learn?

There are some real positives about how things are currently being done. The Psychologist commented how lovely it was that Little Bear’s teacher and his TA are both willing to be physically affectionate with him and allow him to snuggle close to them. His teacher (a man), calls him ‘mate’ a lot and gives him reassuring pats on the back or arm. In this day and age where figures of authority have to be so careful about touching children, and some establishments have become so wary that they don’t touch children at all instead keeping some kind of unnatural and cold distance, it is heartening that the Bear’s school feel able to react to him naturally and to provide him with the physical comfort/connection he needs.

There are also real positives in terms of a multi-sensory curriculum and learning being fun. Little Bear is largely happy in the classroom and his trusting relationship with both members of staff is evident to a new onlooker. These things are reassuring.

What is more concerning is that Little Bear was not observed to be regulated at any point during the morning-long observation. I’m not surprised though. We achieve periods of regulation at home but that’s because we work really hard at it and we have spent three and half years getting tuned in and figuring out what works. I can see that without a trained eye, it would be difficult to figure out the underlying causes (often linked to Interoception in my opinion). I am still very much trying to untangle Little Bear’s sensory needs and that is with Sensory Integration training under my belt and a lot of time to puzzle. I can fully understand how, without the training or the experience, school would struggle to interpret and manage these aspects of Little Bear’s needs. The good thing is that today’s visit has brought them better understanding and the report will bring many practical suggestions for ‘sensory snacks’ to hopefully improve regulation across the day. I’m excited to read the ideas and maybe steal some for home too.

Little Bear was also observed to be anxious, hyper-vigilant and attachment-seeking in the classroom. Staff were observed to be inconsistent in making Little Bear adhere to the rules and at times punished possible self-regulatory behaviour. The big take home message for school was to ask themselves, ‘what is Little Bear showing us with this behaviour?’ ‘What is he showing us he needs?’ ‘What can we do to make him more comfortable/reduce his anxiety?’ instead of saying, ‘how can we stamp out this unwanted behaviour?’

The take home messages for me were more questions to ask of myself: ‘Are we doing enough to meet Little Bear’s sensory needs?’; ‘Should I get somebody else to assess him in this area?’; ‘Do we make appropriate accommodations for his sensory needs, particularly at mealtimes?’ I do find myself saying “sit down properly” a lot more than I probably should.

We talked a lot about difficulties with executive function and employing strategies to support that, such as visual supports, timers and short sharp bursts of learning, interspersed with sensory snacks. We talked about positive feedback, a proper meet and greet, a better transition for the end of lunchtime and closer supervision if unstructured play is leading to difficulties.

One of the main reasons we initially sought psychological input was due to the upcoming need to re-apply for funding for Little Bear. Today’s Psychologist was strongly of the opinion that Little Bear’s supportive adult should not be removed from him – he needs her support to get going with tasks and frequent check-ins to help him complete them. He cannot learn without adult support currently – an opinion we also hold strongly and one of the key reasons I got so frustrated with the LA Ed Psych who thought we should be working towards independence. The fact that today’s Psychologist independently and without any vested interest, drew this opinion is a great outcome and will hopefully add significant weight to our case for funding. I would love to say I’m not worried about that but I am because there are a few wider things also happening, relating to staffing at school and some problems with our back-up plan, should the funding application be rejected. There is always something to worry about it seems, but, today, I’m going to bed hopeful that now Little Bear has been seen through the right eyes, we might be on the right track to him getting the right support.

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Being an Expert Parent

Recently, I keep having flashbacks of being a community speech and language therapist. The memories are of some very specific parents: those whom we feared a little bit. I think every caseload has them – the parents whose children you resort to drawing straws for and whom everybody avoids ringing. More often than not it would be me ending up with them on my caseload. That was a little bit because I’m a glutton for punishment, a little bit because I’m magnetised towards a challenge and quite a lot because I admired them and even then knew that I shouldn’t avoid them because in another world, I would be them. Not all of my colleagues were so keen though and there were certainly parents who gained notoriety within the department for being demanding or difficult to please.

I knew, even then, before I’d had my children and before I had become one myself, that nobody becomes an Expert Parent for the pure fun of it. Nobody sets out to rattle people’s cages and make demands and make themselves heard and fight for stuff just for kicks. People are forced into these positions by services which don’t meet the needs of their children and by having children who are different and need different things. That in itself is a tricky and unenviable position, before you find yourself pushed to the bottom of clinician’s to do lists.

I suppose I felt I owed it to these parents to shake myself off, put my big girl knickers on and bring them my A game. Yes, sometimes they were difficult. Sometimes they asked me hard questions or tried to pin me down to providing things the NHS couldn’t really justify. Sometimes I needed a little lie down after I’d seen them or an extra chocolate biscuit but generally, I didn’t regret taking on those cases. If anything, those parents made me a better therapist. They made me think harder and consider more angles and give even more than usual. I would far rather work with a keen parent, who would support care plans etc., than with an apathetic parent who didn’t really want to be there and hadn’t really bought in to the whole speech and language therapy thing.

However, I am not an angel and I’m sure there were times I went back to the office and had a little rant about what Mrs Whatever Her Name had done or said now. I know my colleagues did that too and no matter what anybody says in public, I think it’s natural that that kind of letting off of steam happens and I’m certain it does happen in clinical and educational and medical teams up and down the country.

I suspect the reason I keep thinking of these parents at the moment is because the realisation is dawning that I have become one of them and there are probably people discussing what a nightmare I am in an office nearby as we speak.

I think it hit me last week, during our horrendous meeting with the Educational Psychologist (see Conversations ). I realised that in a competition of who knows most about the needs of adopted children (well, my adopted child anyway) I could have left him for dead. It was a hands down defeat. Not that I wanted it to be a competition or to have to assert my knowledge in any way but the more defensive and wild he became with his points, the more I found myself standing my ground and refusing to accept his ignorance. I could see the fear in his eyes and him shrivelling away into his shell in front of me.

Having been on the other side of the fence, I do fully understand how it feels to receive that type of onslaught. I have been grilled in tribunals and sat in meetings where I’ve said the opposite of what people want to hear. I have stood in front of a room of experienced adopters and wondered what on earth I could possibly teach them that they didn’t already know. None of us have all the answers and it can be uncomfortable to be faced with someone more knowledgeable than ourselves, especially when we are in the position of ‘expert’.

It’s never fun to be in that situation but the crucial thing is our handling of it. I’m finding that professionals tend to fall into one of two camps when faced with an Expert Parent – those who are comfortable with admitting they don’t know things and are prepared to go away and find out, and those who grow defensive. The ones who grow defensive are no help whatsoever. I find they tend to want to discredit you and give opposing views just to save face.

Although I have to accept that as a parent I do come with quite a bit of knowledge now, I certainly don’t want to come across as conceited or combative or difficult. Most of the time, I think I conceal the majority of my knowledge and try to allow professionals we meet to do their job without interruption. Our experiences with the Speech and Language Therapy Service were reassuring in that way – I was a pain in the backside and I did complain but as soon as we had a therapist who wasn’t frightened or defensive, things went fabulously. I knew she knew her stuff and that if she didn’t, she would admit it before going away to find out, so I felt completely reassured. I didn’t need to come over all Expert Parent with her. Equally, I have rarely, if ever, shown school the full extent of my knowledge or readiness to fight.

However, our experiences with the EP last week would suggest that when faced with a professional who talks bollocks I can no longer rein myself in. I am careful not to be rude or aggressive but I did ask hard questions and I didn’t accept his answers and I did make the poor man sweat.

I couldn’t help myself. It seems there is a certain standard that I expect (as Expert Parents in the past have rightly expected of me) and I can’t tolerate a standard that isn’t good enough. There are many reasons for it – my oft spoken line ‘if I don’t stand up for my child, who will?’ Also, if I, as a professional person with a brilliant support network don’t have the balls to call out professionals who aren’t good enough, who will? As I said last week, our children deserve the best services, not the worst. I didn’t wake up in the morning thinking, ‘I know what would be fun today, lets antagonise an EP’, because no one does and in reality it isn’t an enjoyable experience. I was furious for most of the afternoon afterwards and only relaxed when the SENCO caught me at home time to say they wouldn’t accept the inappropriate standard of the EP either and would pay for a private assessment for us. I was really touched and reassured that they cared enough to do that.

The following day I had a migraine because I had become so tense during and after the meeting. There isn’t anything enjoyable about being an Expert Parent. It is a compulsion based on having a child who needs you to be one.

As much as I have purposefully armed myself with knowledge and am prepared to fight if necessary, I do worry about how I’m perceived when I unleash my inner Expert Parent. I have the same insecurities and basic desire to be liked as anybody else. I do worry that people will think I’m a knob. I worry that the teachers sit in the staffroom discussing what a pain I am and how much they hope Little Bear doesn’t end up in their class, like we used to when Expert Parents got referred for Speech and Language Therapy. I worry they see me as overly outspoken, too big for my boots or just plain annoying.

This morning I had to check some SEN paperwork for Little Bear’s teacher. I queried one part because I was worried how it would appear to a funding panel. “I knew you would,” the teacher said. He was laughing but my reputation already comes before me.

Part of me genuinely worries about how I’m perceived because having good relationships with people is important to me. I want to get on well with teachers and other professionals. I am not someone who has ever been a fan of having enemies. However, another part of me tries to listen to my husband, whose attitude is ‘who cares?’ We do what we do because we have to and because our children are our priority. If people can’t handle it, that’s their problem.

There is a certain kinship about being an Expert Parent – we understand the routes that have been taken, the difficult meetings, the dredging up of energy we don’t have to face another battle. We understand so many things about each other without even having to explain it. It’s so important we stick together. It should never be a competition about whose life is hardest – it should be a network of mutual admiration and understanding.

I have a close friend who is just making the first difficult steps into seeking a diagnosis for her son. She is encountering professionals who won’t listen to her, despite her having turned this situation over every which way in her mind for several years and her being an Occupational Therapist. She’s struggling with having her worries aired for other professionals to hear and with fearing people won’t see what she sees. It can feel very vulnerable being an Expert Parent, especially as there is so much scepticism from teachers and other professionals over whether you really do have the knowledge you’re pretty sure you have. It is unfortunately through these vulnerable moments and the judgement we face that we become even more confident as Expert Parents.

I know that we are feared up and down the land by professionals of every type because we make working days harder and take up more time. It is the system that has bred us this way; the services that have nurtured us; the unprofessional comments and decisions that have fuelled us. We don’t want to be Expert Parents any more than you want us to be. If you work hard, do your job properly and are prepared to meet children’s needs adequately, you have nothing to fear. We’re lovely, actually. But woe betide he or she who stands between us and our children’s needs being met. They will experience the full force of our Expert Parent fury, knowledge and willingness to call you out.

And the ground shalt quake.

Conversations

Firstly, I’m sorry, I’m in a bad mood at this moment and I rather suspect it will be evident as this blog post progresses. The reason for my mood will also transpire.

Earlier in the week, we had some workmen over to do a job for us. I didn’t know them but we got chatting, as you do. Within minutes I had learned that the man’s son had ADHD and they’d had difficulties with his schooling. Feeling an immediate kinship, I felt I wanted to tell him that I also have a son and he also has some behaviour and learning needs. I was cautious though because I distinctly remember sitting in adoption preparation groups doing a practical exercise on who you should and should not share information with about your child being adopted. Workmen were a clear ‘no’. They knew where you lived: they did not need to know that an adopted child, who may be vulnerable, lived in your house. This was in the back of my mind but I also knew that this man had walked a walk which I understood. I decided to trust he was a decent bloke and shared that I also have a son with needs.

We shared some similar anecdotes and then he asked me what diagnosis, if any, my son has. I knew this would happen and this was the bit I had considered avoiding. However, I didn’t. I explained he’d had a traumatic start in life, was now adopted and his diagnosis was Developmental Trauma. The man understood what I was talking about and it turned out he knew an adoptive family well and their son had similar needs. It also transpired that the man himself was adopted so we chatted about that too.

It was a conversation I perhaps shouldn’t have had, but it was a thoroughly positive experience.

Today, we had a meeting with an Educational Psychologist about Little Bear. This was an official conversation I had to have but ironically, this was the conversation I wished I could undo. As I’m sure you’ve guessed, this is the reason for my furious mood. As a parent of a child with additional needs, when you have a meeting about those needs with a professional who is supposedly more knowledgeable than you are, the very least you can reasonably expect is to come away feeling understood. You would also hope to come away with some useful tips or strategies. You would not expect to come out sweaty-angry because things have got a little heated.

We’ve seen the Educational Psychologist (EP) before (see Seeing the Educational Psychologist and SaLT, EP & an Assembly ) and despite me having some misgivings, it went brilliantly. The man in question was knowledgeable and trauma-informed. Unfortunately, that EP has moved on and we have a new one.

Things started okay with this fellow. He’d done an hour’s observation first thing then we had met for a consultation, with the SENCO, class teacher and Little Bear’s TA also in attendance. The main purpose of the meeting, in my mind, was to review where we were up to in terms of re-applying for funding going forwards. I am fully aware that funding is not within the jurisdiction of the EP. However, I have been in enough of these situations to know that as a professional, you are often called in to inform a funding decision. You make an independent assessment and you write a detailed report detailing a child’s needs. It wouldn’t bother me in the slightest if people wanted to discuss funding in my presence. I wouldn’t be able to say whether a child should have it or not but I would be very clear about their needs and what measures are required to meet those needs appropriately. I thought the EP would do the same.

Instead, he was so touchy about funding (even though we didn’t mention it any point) that I came away believing he had a (not very well) hidden agenda. It meant that he wouldn’t give a straight answer about what level of support he believed Little Bear to require and wouldn’t comment in any detail on his needs. He kept saying, “I have no influence on funding”. We kept saying, “We know, we aren’t asking you to comment on funding”. At one point Grizzly said, “So, are we on the same page?” (in relation to a specific point) and the EP replied, “I’m on my own page”. When we tried to establish what that page was, he wouldn’t tell us. It was most baffling.

I also felt he had little to no knowledge of trauma/attachment. It was when we started discussing independence that things started to unravel.

The key reason that Little Bear has 1:1 support now is due to his extremely poor emotional resilience and lack of self-confidence. I’ve talked about it before and I think my post Jigsaws illustrates my point most powerfully. The EP evidently thought (though he only said so cryptically) that Little Bear has too much support and does not do enough work independently. He felt independence in his learning was a priority. I disagreed with this because I feel his biggest priority is building resilience, a love of learning and the confidence to tackle new tasks when faced with them. When those things are in place, he will manage independence. I struggled to get the EP to understand this.

He kept saying that Little Bear can be given a task he knows how to do first to break him in gently to a task he’s never done before. That makes sense in theory but what he doesn’t account for is Little Bear’s alertness to new tasks and the fact that, without the nurturing support of a trusted adult by his side, Little Bear will baulk at the task and not be able to begin. The EP, in his uninformed wisdom, reckons that with practise of working independently, Little Bear will learn to complete tasks alone. He won’t if he doesn’t have the requisite skills or belief. He will disengage and learn diddlysquat.

The EP went on to patronise us all by saying that children need to experience success in order to build resilience. I KNOW. I feel as though I have said it a million times myself. However, Little Bear currently needs adult support to begin and engage with a task. He needs an adult to support him to stay on task and reach the point of completion and success. Without that support, he will not experience success. You can’t remove his safety net and expect him to get there by himself.

I pointed out that we put him in challenging positions all the time. I didn’t labour the fact that we tirelessly work to match activities to ability (see Our Just right challenge) and carefully dampen or increase our level of support to ensure his success. He said, “But do you though? Do you do it enough?” It was an open question to us and school but I would like to have seen him take Little Bear canoeing when he was still in the feral phase or take him for a skiing lesson or horse-riding or on a plane or on a skidoo or a bike or supervise him with a sharp knife or a power tool. We have done all of those things and more and I did not appreciate the inference otherwise.

Grizzly had done well keeping fairly quiet throughout this debate and I wondered if it was just me. However, the EP went on to suggest a strategy of “planned ignoring” for when Little Bear interrupts or shouts out in class. Grizzly stepped in to point out that there is an attachment reason behind this behaviour and Little Bear shouldn’t be ignored because, if anything, it would inflame the problem. He needs to know the teacher hasn’t forgotten him and is holding him in mind, even if shouting out is not an appropriate behaviour. The teacher’s approach of saying; “That’s a lovely answer. I’d love to hear it when it’s your turn/ when you have your hand up” feels much more appropriate.

Overall, I felt the strategies the EP suggested were extremely basic and I felt defensive of the school who are already working hard and employing so many more complex strategies. The suggestions he made indicated a lack of knowledge and understanding of the complex behaviours we all experience.

The final straw, which we were unable to resolve, came when he said he had made a tally of the number of times Little Bear’s TA intervened to help him during a task. Apparently it was, “considerably more often than she intervened with others”. I queried this because Mrs. C is employed with Little Bear’s funding as Little Bear’s TA. I would expect her to help him more than others because that’s her job. I couldn’t understand the point of it as a statistic. The EP seemed to suggest the number was meaningful so we asked him what his interpretation of the number was – did he mean that Mrs C steps in too frequently or that Little Bear requires a high level of support? He refused to be drawn, saying he is there to gather the information, not to comment on it. He then returned to his rhetoric of not being allowed to comment on funding.

The Head, who was working quietly in the room, but not in the meeting, said, “They aren’t trying to trick you, I think they just want an answer” to which, there was no answer.

The more I reflect on it now, the more bizarre it seems. I get the impression this EP is used to coming to meetings, asking lots of questions, writing down the answers and going away again. I don’t think he is used to informed parents who ask difficult questions of him. I’m pretty sure he went away thinking we are a royal pain in the backside but I don’t really care. It isn’t okay to provide mediocre or downright rubbish services to parents because they don’t know otherwise. Services should be excellent because these are the most vulnerable children in our society. What we do now and what support is put in place for Little Bear now is going to be crucial for his life chances in the future.

I know people are under pressure because of funding cuts and I suspect he did have an agenda along those lines but children’s needs are their needs, irrespective of funding and I’m not sorry that I will fight for Little Bear’s needs to be met. I’m sorry we crossed paths with that particular EP and I’m sorry we have to have another meeting with him in a couple of months. I suspect it would have gone considerably better if we let our workman from earlier in the week chair the meeting.

I am sure it will all work out and with a child with additional needs, a meeting or three like this are par for the course. But they shouldn’t be. It isn’t ok and our children (and us if we’re honest) deserve more.

I do want to give credit to school though and specifically to Little Bear’s teacher, who has really listened and changed his approach and referred several times to ‘doing things differently’ in the meeting. I am extremely grateful to them.