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.

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Being an Expert Parent

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.

Conversations

Why Nativity Rocks is Not For Care-Experienced Children

This afternoon, we went along to the cinema with some friends of ours to watch what we thought would be a family-friendly film: Nativity Rocks. We’ve all seen the other films in the Nativity franchise which are funny, silly and worth a watch and just assumed this would be the same. However, I felt I had to write this post afterwards, to warn other families like ours that it might not be wise to take your children along after all.

The problems begin early on when Mr Poppy’s long-lost brother turns up trying to find him. The brother, who is a grown man, talks about not having a family and soon mentions that his mother “didn’t want him” and “put him in a children’s home”, before he ended up homeless and unloved and she died. There is so much to unpick in that sentence alone.

I sort of see where the writers were trying to go with this – I guess they were trying to acknowledge that some children who go into Care feel a sense of abandonment and as though it was their fault, somehow having driven their parents to ‘give them up.’ As we know, children are rarely ‘given up’ these days but aside from that, the narrative was such that Mr Poppy’s brother’s opinion wasn’t really corrected. Because the words about being put into Care come from a grown-up’s mouth, it makes the viewer feel as though they are true: that children really do go into Care because of something they have done. Were it a child saying it, perhaps I could forgive the film as trying to represent how looked-after children really feel, but it didn’t come across that way. For a young person viewing it, I think there would be a very real risk that they begin to question whether going into Care could have been their fault.

Not only this, but for non-care experienced children watching the film, the questions they are likely to carry away with them are, “When I meet an adopted or fostered child, I wonder what they have done wrong to have been taken away from their parents?”

Later on, the brother makes a throw-away comment about having been bullied and his Mum thinking he’d stolen something he hadn’t, leading to him, in his mind, going to the children’s home. Again this isn’t corrected and further perpetuates the myth that children go into Care through some fault of their own. The idea of being unloved and rejected continues throughout and is unfortunately portrayed as synonymous with being in Care.

As if this wasn’t bad enough, the film proceeds to present a very glib picture of how adoption works. There is a side story about a young refugee who has travelled to Britain from Syria, becoming accidentally lost from his father along the way. A social worker appears to care for him (wearing a stereotypical rainbow jumper, obviously) and takes him to what I assume is meant to be a foster placement. This isn’t so bad but Mr. Poppy’s brother announces that as neither he nor the boy have a family or home, they will need to get themselves adopted. Aside from the fact that you wouldn’t family-find for a child who is looking to be reunited with their father nor for a grown man, the film’s handling of the next steps is insensitive to say the least. According to a very facetious scene, children get to interview potential adopters and ask them ridiculous questions. As we know, potential adoptees are not offered such a say, if any, in their future parents and to suggest they are and that the process is so superficial felt distasteful at best. One question asked is: “If you adopt us, who will be your favourite?” to which the potential adopters point to their birth child as if to say “obviously her.”

I couldn’t help feeling the whole idea of adoption was laughed at and demeaned.

To compound it all, the adopters all say no to the pair and Mr Poppy’s brother announces they are homeless and will need to sleep on the streets. I know that our Care system has its flaws but suggesting to fostered children that all potential parents could reject them and leave them to live alone and outdoors is at least triggering and at most the stuff of their nightmares.

By this point we have a picture of children in Care as being unloved, rejected at every turn and destined for a life on the streets. I suppose if the film were about being in Care and raising awareness of some of the issues experienced by care leavers, this might be appropriate but it would need to be balanced by success stories, permanence and safety. I definitely don’t think that the message we have received is the one we want to give to young people in Care at Christmas, of whom there are thousands who, like other children, will want to see the film.

I can see that Nativity Rocks is trying to be inclusive and representative of all different types of families, which is laudable, but unfortunately a great deal is lost in the execution and the refugee issues are somewhat conflated with the Care issues. The Refugee is eventually happily reunited with his father but as the storylines are so confused, the film rather suggests that any child who has been separated from their birth families could be reunited with them, if they try hard enough. Again, not an appropriate message for children grieving the loss of their birth families or an appropriate message for non-care experienced children who will go away thinking adoption is a temporary solution to having accidentally misplaced a parent.

Such inaccuracies are irresponsible, especially in a high budget production that will be seen by thousands.

At another point, Mr. Poppy’s brother and the young refugee go home with a little boy who has a very affluent background. They stay there without the boy’s parents knowing but once they’re discovered, the Social Worker asks if they can stay because, you know, who gives two hoots about paperwork or approval or checking adults are safe.

The problems come thick and fast. Not only do we have all the above to contend with but the Social Worker is portrayed as hapless. Her father refers to her having “lost one before” as though mislaying a child in her Care would be amusing. She goes on to ‘lose’ the young refugee (oh how we raise our eyebrows and titter) and then a dog, which is apparently similar to losing a child.

I know that as a viewer of any film I should expect artistic licence and the impossible to become possible. If you can imagine it, anything can become real in a film. I’m all for that and some factual incongruities or inaccuracies wouldn’t be enough to bother me. What concerns me is when something is so inaccurate or portrayed in such a skewed fashion as to become harmful. I fear that’s what happened in this film. I feel the potential for re-traumatisation or the risk of worry or upset is far higher than necessary, especially in a film which sets out to entertain and spread Christmas cheer. For those it won’t upset, it will do nothing to improve their knowledge and understanding of the Care process.

Aside from the clumsy content, there are themes of loss and separation running throughout the film which could alone be enough to upset our children.

For me, the handling of adoption and fostering themes was catastrophically bad. Grizzly is usually fairly immune to the odd inappropriate comment but he was pretty outraged too. We were genuinely bemused as to how the film got approved. I’ve no idea who researched it but I don’t think they tried very hard – I certainly don’t think they spoke to anybody even remotely involved with the Care System. In my opinion, this is not one for fostered or adopted children or children who are separated from their families for any other reason. It’s a shame because the film is quite funny in places and Big Bear in particular was pleased about the rock music aspects. Little Bear liked parts of it but there were several bits that made Grizzly and I feel very uncomfortable to be watching it with him. He didn’t say anything but he did ask to play with one of our phones half way through and we let him because of the content. Sometimes with him it percolates and the questions might come later or the worries might come out through his behaviour.

Overall, an insensitive, badly-handled and ill-informed film that perpetuates harmful myths about children in Care. Nativity Rocks unfortunately doesn’t rock and I’m left wondering what on earth they were thinking.

 

Why Nativity Rocks is Not For Care-Experienced Children

DLD Awareness Day 2018

It’s been a hefty week for blog-fodder with both National Adoption Week 2018  and International Developmental Language Disorder Awareness Day (Friday 19th October) landing at the same time – two events I am always keen to talk about.

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This year’s theme for DLD day is the ‘ABCs of DLD’. The ‘A’ represents assessing our understanding of DLD. If you want to test how much you know, you can take this handy  Quiz

When I reflect on what I know about it, my professional experience as a speech and language therapist has mainly been usurped by my experiences at home, parenting my son who has DLD. He is currently 6 years old and in Year 2 at school. He has been discharged from speech and language therapy because his scores for both comprehension and expression of language now measure within the expected range for his age. A key thing I have learned is that with the correct intervention, children with DLD can make incredible progress and can catch up (see Speech Therapy Works  for more detail).

Although Little Bear has made unbelievable progress, he does still have DLD. He largely copes well day to day but there are specific times when I notice a difference in how his language system works compared to other people. One time is when he tries to learn a new word or a new name. Little Bear requires much more repetition of unfamiliar vocabulary and often needs me to break new words down into syllables so he can learn them in manageable chunks. He is very good at learning and retaining new words now but the processing part of his speech system isn’t as smooth as it should be and he would struggle to store new words without some specific teaching. If he doesn’t have help to ensure he understands what a word means and what all the bits of it are, he might struggle to say that word correctly e.g. ‘Emily’ recently came out as “Elle-uh-me” and ‘Joseph’ as “Jo-Fitz” or he might mis-store the word e.g. when Little Bear puts on a tall pointy hat, he says he’s being a ‘lizard’ (he means wizard) or he tells me to find things on the ‘window sledge’. Little Bear also uses ‘about’ instead of ‘without’ so will say, “It’s hard to sit on this chair about falling off it.”

Little Bear has good awareness and he knows he’s making the sound errors (he isn’t always aware of the naming errors). He often looks to me at these points to do a bit of speech therapy on the fly to help him. Children with DLD are not un-intelligent. They can learn and retain information like other children, as long as the information is presented to them in an accessible way and/or suitable strategies are employed to help them.

Little Bear’s DLD is also noticeable when he is tired or when he is faced with too much auditory information. He still copes better if large chunks of information are broken down for him and in a conversation it helps him if you are willing to repeat some parts of what you’ve said. He does generally understand the concepts you are talking about and any explanations you give to help him but he can need a little longer to process them, more pauses and sometimes a second chance to listen to the information. If words sound very similar, Little Bear can struggle to differentiate between them e.g. fourteen vs forty, which can impact on his understanding of what he’s heard.

Most of the time, Little Bear can express his thoughts and ideas competently with language, even if they are complex. Occasionally he forgets to reference what he is talking about and we have to ask a few questions to catch up with him. There are some parts of grammar that he makes occasional errors with. We still use modelling strategies at these points.

I think it can be difficult for people who don’t know him well or teachers to see his DLD straight away. Now that his speech sounds are much more accurate, his language difficulties appear more subtle. It isn’t a surprise that DLD is a hidden condition and is widely underdiagnosed or misdiagnosed (see Ensuring Children’s Speech and Language Needs Are Met: A Call to Action for more info).

This brings me to the ‘B’ of the ABCs of DLD – build knowledge.

If you’d like to read more about what Developmental Language Disorder (DLD) is, you can read this previous post: Developmental Language Disorder

DLD is much more prevalent than most people think – 7 times more common than Autism. If you want to estimate how many children are likely to meet the criteria for DLD in your school, you can use this calculator tool: Calculator Tool

A particularly useful source of information to expand your knowledge of DLD is the new RADLD website: www.radld.org

As DLD is often hidden or missed and the consequences of lack of diagnosis/misdiagnosis are so concerning (increased likelihood of unemployment, mental health difficulties and involvement with the criminal justice system) it is imperative that we work together to raise awareness, hence ‘C’ is for create awareness and is my main focus for the day.

Here are some of the things I will be doing to create awareness:

  • Emailing my children’s school to share information about DLD and the RADLD website
  • Sharing information on my social media channels including tweeting with the hashtag #DLDABC throughout the big day and sharing #my3forDLD
  • Sharing this blog
  • Wearing my newly printed RADLD campaign t-shirt and hopefully explaining what it’s all about to people who ask me
  • Our local newspaper has agreed to print an article I’ve written about DLD on the 18th. It is going to include a photo of me wearing my campaign t-shirt (their idea, I’m a bit scared and frankly too many people have seen my face this week already!).

 

If you’d like to join in with the fun and make a difference at the same time, you can:

  • Use the hashtags #DLDABC and #my3forDLD on Twitter, sharing knowledge, thoughts or ideas
  • Share this blog far and wide
  • Tell one person what DLD is
  • Contact your children’s school to let them know about DLD Awareness Day and the RADLD website (feel free to send them this post)

 

If you have any concerns about your child’s language development or a young person you are working with, contact your local speech and language therapy service. Getting the right support has made an enormous difference to Little Bear. I asked him what difference it had made: “A lot. A big difference because I wasn’t good at talking. It was tricky. My talking is lots better than before. Miles better! I’m good at writing now.” He went on to say that speech therapy was fun and he missed ‘the lady’.

It is never too late to put support in place. Ideally, identification of DLD would be early and support would be tailored and intensive but if the signs have been missed, it isn’t too late. Support in the teenage years continues to be effective.

Teachers, health visitors, social workers, the police, lawyers, people who work in public services (amongst others) all need to know about DLD. They need to know it exists so they can be better at spotting the signs. When we see disruptive behaviour, particularly in classrooms, we need to consider DLD. If we want to improve outcomes for children like Little Bear, we need to spread the word; we need people talking about DLD. Let’s see if we can make that happen…

DLD Awareness Day 2018

National Adoption Week 2018

Next week is National Adoption Week – a big push from the industry to raise awareness of adoption and to encourage would-be adopters to pursue it. This year the theme is ‘the adopter’ – who makes a good adopter and, from my perspective, what support do people need to succeed as adopters?

This is the third National Adoption Week since I’ve been blogging and it’s tricky to have a fresh perspective each time (the first year I blogged every day and last year I wrote The Little Things ) so this time I’ve asked the boys for some help.

Me: What should I say to people who might want to adopt a child?

Little Bear: Do it!

Big Bear: Do it because you’ll help save lives of children. You might regret it for a bit but it gets better and better and better.

Me: Is it something everyone should do?

Little Bear: Yes, because if they’ve not got good parents, they have to send them to good parents.

Big Bear: No, because you might be too busy or dangerous people shouldn’t be allowed. Parents need to be approved as good. It depends on their environment and home. They need to respect the child’s values.

Me: Is there anybody who shouldn’t be allowed to adopt?

Little Bear: Named a lot of people we know! I think this question was too abstract.

Big Bear: They can’t judge a child on colour or how they look. You need training. It doesn’t matter about shape or size. You really just need to be able to protect a child.

I think you can tell Big Bear has been learning about values and diversity at school. Or perhaps he has a future in politics.

Me: Have you got any advice for people who adopt children?

Little Bear: You should be nice and take care of them.

Me: Was there anything we did that you didn’t like? That we should have done differently?

Little Bear: You guys were really bossy but now you’re just perfect.

I suspended the interview at this point to smother him in kisses and tell him he is perfect too.

Big Bear: You can’t give children everything they want, just what they need. Help them. Support them. Ask if there is anything wrong. Don’t be violent to your child. Take it easy to start with. Don’t talk about horrible stuff.

Little Bear: Yeah, don’t let them see scary things.

*

Between them, I think the Bears have raised some salient points. Firstly, adoption is not for everybody, they’re right about that. Adoption is life-changing. I don’t see the point of lying to people in an attempt to snare them, only for them to find out the realities when it is too late. Adoption is challenging in all regards – emotionally, practically, financially. It is rarely a fairy tale. Adoption requires you to open your lives, not just to a traumatised child, but to the wider birth family who inevitably come with them. If you think they don’t come with them or that a child can just forget their past once they’re with you, adoption is not for you. If you do not believe in attachment theory or the impact of developmental trauma on the infant brain, adoption is not for you. If you believe that a child’s needs can be resolved by love alone, adoption is probably not for you.

However, if you are prepared to educate yourself in ACEs, trauma and therapeutic parenting, and you are willing to put yourself in the shoes of your child and are prepared to try your best to look at the world from their point of view, you might find out how amazing adoption can be. Adopters need resilience, a willingness to learn, a preparedness to fight for their child if circumstances require it, an open mind and an open heart. An ability to persevere helps and so does keeping going, no matter what. If you have not yet turned away or come out in a cold sweat, maybe you could do it?

I think there are some members of the adoption industry who are unwilling to tell this truth through fear of the damage it will do to recruitment of adopters. My view is increasingly that if people are put off by a few truths, they are unlikely to be cut out for adopting. We need people to go in with their eyes open, because discovering you can’t do it or it isn’t quite what you thought it would be once you’re already in, causes irreparable damage to all parties.

I don’t mean to point fingers – to some extent there will always be unknowns. There is the unavoidable disparity between understanding something in theory and experiencing it in practise. There is the unpredictable impact of moving a child from foster care to their forever home and all the additional losses that come with that. There is the unavoidable risk of relying solely on the information that is provided to you.

Risk cannot be fully mitigated in adoption.

However, I truly believe there will always be people who are willing to take these risks; people who won’t see the risks but the possibilities. Those people, they are the ones who are needed.

Everything in life is a risk isn’t it? Conceiving and given birth is riddled with risk but we tend to err on the positive when we talk about those. Riding motorbikes is risky. Buying shares is risky. Extreme sports are risky. Debts are risky. Crossing the road is not without risk.

We decide where to put our risk; when to roll our dice. We choose which risks are the ones we want to take. Which ones feel like calculated risks and which are a risk too far. I am one of the most risk-averse people you could meet. I wouldn’t roll my dice on debt or drugs or bungee-jumping or extreme-anything. In truth I’m hyper-aware of risk, worrying far too much about terrorism, planes falling out of the sky or getting squished on the motorway. But I took the risk of adoption. I informed myself so it was a calculated risk. I embraced everything about the idea of it, risks and all, because, for me, I believed it would be worth it. I believed it would be more than its risk. And it has been. So much more.

Adoption has been life-changing for us, in every way. Big Bear has become a brother through adoption. He has grown stronger and more self-assured because of adoption. He was always going to be a kind and empathetic young man but adoption has made him even more aware of others – the ways in which they might struggle, the ways in which he has the power to change outcomes for them through his words and actions and the ways other people’s lives might differ from ours. He’s very emotionally astute for a nine year old and I think adoption has played its role in that.

For Grizzly and I there is the obvious impact: we have gained another son. A son who drives us up the wall at times, who has found buttons we didn’t even know we had and pushed them, then pushed them again. A son whom we love entirely, just as he is. A son who we are immensely proud of and who brings each one of us joy, every single day. A son who is the funniest, kindest, most determined young man you could wish for.

Adoption has completed our family. It has brought our parents another grandchild; my brother another nephew.

For me, adoption has taken my career in new directions. It has led me to writing.

And as for Little Bear himself, it’s kind of hard to quantify. I don’t want to perpetuate the myth that adopters are like superheroes, saving children from a lesser life. There are no capes or bulging thigh muscles here and we don’t wear our pants on top of our clothes too often. There is no heroism in losing your temper or the natural mess of our daily lives. But it is possible to think about Little Bear’s starting point and the ways in which being adopted have undeniably changed his trajectory. He has gone from being a three and a half year old functioning at a 16 month level to a keen, enquiring and capable 6 year old. He has gone from attending a special educational needs nursery to literacy, passing through and leaving behind the lowest group in his mainstream class. Expectations for his future have gone from zero/ worrying to certainty he will succeed in a field of his choosing.

Adoption means Little Bear aches for his birth siblings. It means he has a lot of questions and we don’t always have the answers. It means he sometimes feels different and wonders where he belongs.

Adoption has given Little Bear stability, safety, self-belief and certainty. It’s given him a forever home and a family who will fight wolves empty-handed for him, if necessary.

Adoption has been life-changing for us all.

I can’t tell you to do it and I can’t tell you not to do it. It’s your risk.

If you think you can do it, do your research. Know the type of risk you are considering; arm yourself with knowledge.

I can tell you this: you cannot do it alone. You can be a single adopter, of course, but you need your people for the days when you don’t feel well or when your little darling has driven you three times around the bend. You need an adoption agency with proper, robust, actual post-adoption support for the times when only a reassuring, experienced professional will cut it. You need to acquaint yourself with self-care; what works for you, how much and how you will know when you need it, because adoption relies fully on you being okay.

Adoption is not the right route to parenthood for everybody. But if you like your risks with a high likelihood of progress, satisfaction and pride, it could well be the route for you.

National Adoption Week 2018

Working on Interoception

Back in March I wrote this blog: Interoception   At the time, I promised I would have a go at working on interoception with Little Bear at home and I would report back about how we got on. Another random Twitter chat has prompted me to do that this week so here we are!

I began Mission Interoception by buying this book because I struggled to find any practical information on the internet:

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It is quite informative but it is also very expensive for what it is. I was expecting a sturdy text book for the £24 I paid, not a thin novel sized book which I was able to read in one sitting. Although the content is quite helpful, I didn’t find it revelatory. The basic premise of interoception remains the same as I thought before: we need to get children more tuned-in to things that are happening inside of them. In order to do that, we need to get them thinking and talking about what’s inside. A key part of interoceptive therapy seems to be describing how different parts of the body are feeling and this is where we ran into a bit of trouble. Little Bear has well-documented speech and language difficulties and it soon became clear that coming up with lots of different adjectives to describe parts of his body he doesn’t really know are there is fairly challenging. In fairness, if I make myself think of how to describe my stomach for example, when I’m hungry, I’m not sure how many adjectives I can really come up with either. Working on interoception has several pre-requisites I’ve discovered and good language skills are one.

The book gives quite a few different activities to do but they are essentially all just different ways of making a child think about a specific body part (a grown up points at different bits with a light sabre/ you draw a picture of your child & point at different bits of the picture etc.). As with most things, I picked the bits I liked the most or thought would be the most fun or the most practical and we had a go.

The book suggests that a good starting activity is to draw around your child (who will be lying on a large piece of paper – wallpaper or lining paper is ideal), get them to help you mark their different organs on their body map and then talk to them about how different ones feel in turn. We enjoyed the drawing around each other part – I roped Big Bear in too to make it a bit more fun:

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 It was at the stage of marking the organs on the map that I realised there was another pre-requisite skill that we were slightly lacking. Your child kind of needs to know what’s inside of them. Not complex anatomy but stomach, lungs, heart, brain, bladder, bowel are all fairly crucial to this. Little Bear seemed to find the drawing around each other part quite overstimulating so between that and not really knowing about the organs, he quickly lost attention for the task. If you were hoping for the kind of blog post where everything goes swimmingly and I resolve my child’s difficulties overnight, you have come to the wrong place.

My conclusion after this was to shelve direct work on interoception for a while so that we could fill in some anatomy blanks. Little Bear’s birthday was around this time and always wanting to get something a bit educational in amongst the fun stuff I had got him this:

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 I found this a much better way to think about insides with Little Bear. The model is good because you can take the transparent plastic ‘skin’ off then ‘dissect’ the man with the tools provided. There is a labelled sheet with blank spaces for you to match the 3D organs up with their pictures. It felt quite a bit more rock’n’roll than drawing on the paper which meant it grabbed my boys’ attention more and they engaged with it better. Over time I linked the items they were removing from the unfortunate plastic man to their own body parts. Sometimes I would hold a bit up and ask if anyone knew where it was on their own bodies. We began to talk about what the bits did and how they worked. We re-visited this task every so often to re-inforce the information.

 Alongside this, the book I bought advocates working on interoception ‘on the fly’ i.e. just at random while out and about, not solely during an interoception task. It also suggests trying to apply interoceptive learning at points of dysregulation, though it points out this is difficult. I realised I was guilty of identifying out loud that Little Bear was hungry or needed the toilet but I wasn’t really arming him with the skills to identify this himself. I tried to add in a bit of interoception on the fly at these points. For example, I might say, “We need to get up now; its breakfast time. How is your tummy feeling?” Little Bear might struggle with the vocabulary so I would sometimes give him a choice of possible descriptions e.g. is it full or empty? If his tummy rumbled, that was brilliant and an opportunity I tried to seize. The first time I tried it, I said, “What was that noise?” and Little Bear very earnestly replied that it was a bear. I suspect he knew full-well what it was but it is possible, with my interoception hat on, that he couldn’t identify that the noise was coming from inside of him.

Over the last months I have tried to tune him into these little signals, as well as things like how his behaviour changes when he needs the loo or is hungry. I describe the changes I see to him and try to get him to feel them e.g. “You are talking really fast and jiggling up and down. I wonder if that could be because you need the toilet? How is your bladder/bowel feeling?” I might put my finger on his tummy to help him focus on the right place.

I think the most significant thing we can now (sometimes) manage is getting Little Bear to pause, even for a few seconds, to consider his body. I can’t pretend it works every time or that when he pauses he can read the signals but certainly sometimes he is now able to stop and try to tune in. This doesn’t sound like much but I think that interoception is something that takes a long time to change. We are chipping away at it and maybe in a year’s time I’ll notice bigger changes.

One thing that has changed is that Little Bear has become aware of his heart and how fast his heart is beating. We haven’t targeted this directly so I do think it’s a sign of improved overall interoception. The fact that Little Bear is able to lie still and be quiet enough to notice his own heart beat feels like a positive step in the right direction. He can use his breathing to slow it down and notices when it speeds up, neither of which he could do before. He seems to have gained this awareness by himself, perhaps as a result of being more aware of where his heart is and what it does. I have seized on this where possible to link the changes in his heart rate with his feelings/emotions, especially when he feels angry. I have explained why I encourage him to do his ‘Ronaldo breathing’ at these points.

A couple of times, Little Bear has been getting grumpy and heading for meltdown when he has managed to say, “Mum, I think I’m grumpy because I’m hungry”. This is brilliant and obviously I have fed him straight away. It’s far from consistent though and I would say that the majority of the time it is still down to Grizzly or I to interpret his behaviour to figure out things like hunger or needing the loo.

With regards toileting, this is the area we have had least success with in terms of interoception. The majority of the time Little Bear doesn’t seem to know he needs a wee until he is wet and then sometimes he isn’t always aware. This is the area that would make the biggest difference to him but I wonder if there is a hierarchy within interoception, with some body parts being more difficult to tune into than others.

Overall, I would say we are making progress but it is slow and steady. I guess it might be quicker if I chose to focus all my efforts on interoception for a 6 week period and did a little every day. It is hard to give it that level of focus though when we have so many other areas that also require our attention.

On a related but slightly tangential note, I have noticed significant improvements in Little Bear’s sensory seeking behaviours recently. I suspect it is since he has had his Our Gym Bar Invention. Initially he used it all the time, for lengthy periods – mainly hanging upside down – but he rarely uses it now. I wonder whether he has had sufficient proprioceptive and vestibular stimulation that he has been able to re-organise those brain systems. It was particularly noticeable during the summer holidays because there were quite a lot of days when he didn’t do any vigorous exercise, just walking, and he was absolutely fine. That could never have happened even a few months ago. Every day he needed a good run around or swim or bike ride or to climb something or we would have been in for trouble. I can genuinely say that has changed which fills me with hope that sensory diets do work. We still see dysregulation but it’s less physical than it was.

My belief is that interoceptive work will be effective too but it’s a long game. Perhaps if I’m still blogging in a year’s time I could give you another update then.

 

 

 

 

 

 

 

 

 

Working on Interoception

Talking is Crucial

We’ve had a flurry of activity here over the past week or so, with various people visiting us and several sleeping over at different points. Each person has come with their own story, most of which have made our day to day challenges pale into insignificance. Their stories are not mine to share of course, so I won’t, but reflecting on it all has left a few thoughts whirling about.

Firstly, talking is crucial. It is crucial in a very basic form: the form where it allows you to have your needs met. We know this as a family, having adopted Little Bear at a point when he couldn’t communicate well and there was more he couldn’t tell us than he could. We know it but sometimes a situation arises that reminds you. One of our guests was a family friend who happens to have learning difficulties. Her speech and language skills are very limited and even in the short time she stayed, we could see a snapshot of the challenges she faces every day. She couldn’t always tell us what she wanted to eat; she couldn’t tell us what she wanted to watch on TV; she couldn’t tell us why she did or didn’t want to do certain things. It must be incredibly frustrating, especially as she can understand much more than she can express (you can’t help but notice these things as a speech and language therapist and incidentally, be a little desperate to solve them).

I certainly feel as though life would be different for her were she able to say everything she is capable of, whether that was verbally or in another way. I also felt it must have been really scary for her, to come and stay somewhere she hadn’t stayed before, knowing she might not be able to get all her needs/ wants met. Imagine how vulnerable that would make you feel. I suppose some people might think that due to her learning difficulties she doesn’t think about these things but I know she knows her communication is different. I think she’s embarrassed about it and is certainly more reticent if there are a lot of people around or people she doesn’t know well. More words began to sneak out as she settled but there was still a huge disparity between the ones she comprehended and those she was able to verbalise at the point she wanted to say them.

I can’t help but think of the what-ifs. What if she’d had more/better speech and language therapy when she was younger? What if she did now? Is it too late? Is it ever too late? Should something alternative have been put in place? What should it be? Why wasn’t more offered? Did people think it was ok because of her learning needs? What if a young child presenting as she did when she was young was under speech and language therapy now? What potential would be seen in them? Would outcomes be different? I like to think so but given what we know of speech and language therapy services since Bercow10 (see Ensuring Children’s Speech and Language Needs Are Met: A Call to Action) I wonder…

Surely we should be striving for the most a person can do, whoever they are, instead of settling for the least we can get away with.

On another note, it was interesting to observe Little Bear with this person. Firstly it really highlighted the progress he has made with his communication. He is a competent communicator now; he can say everything he wants to say and mostly with clarity. It’s not to say that his speech and language skills are perfect, because they are not, but in general, if you popped him into a group of people he didn’t know well, he’d be ok communication-wise. I don’t mean to draw a comparison, because that’s wholly inappropriate, but the realisation that Little Bear has reached that point was a bit of a surprise. I worried for so long that he wouldn’t reach it that this little revelation is very welcome.

Along with this revelation came an uncomfortable truth. Little Bear is now able to use his communication skills for both positive and negative purposes and though he was mostly great with the lady I’m talking about, there was one point when he was tired and cottoned on to the fact that he was verbally wilier and could use his words to wind her up. It was weird to observe because I have seen it so many times directed towards Little Bear, from wilier peers. I tried to intervene to stop him as I could tell he was upsetting her but as he was on that trajectory where he couldn’t stop himself he carried on regardless and I decided to take him out of the situation and up to bed.

The incident had a weird, double-edged irony: I was sad to observe it and sad for the lady’s communicative limitations whilst being simultaneously disappointed that Little Bear would do it yet also noting it was indicative of his developmental progression. We talked afterwards about it and Little Bear could remember times when he wasn’t able to say what he wanted and times when he had to resort to other methods of getting his messages across, such as hitting out and I think he understood why he shouldn’t have exploited her communication difficulties as he had. He was sorry afterwards.

Although it feels like an important moment to reflect on, I don’t want to make it more significant than it was. Overall both boys were fabulous and just took all the issues of the past week in their stride. They are both very empathetic and I’m extremely proud of the kind, understanding, non-judgemental young men they are becoming.

At one point the lady I keep talking about gave Little Bear a bear hug that was a little squeezier than he might have liked. Initially he got a bit upset and took himself out of the room. When I went to him he started with the usual “I hate said person/ she hurt me/ she did it on purpose/ I hate her now” rhetoric but we had a little chat and I left him to calm down. The next thing I knew he was coming over to her, offering another hug but asking her to be more gentle. Again, I could see the progress he had made. Previously he wouldn’t have been able to put his communication skills to such good effect, would not have calmed so quickly and would have given said person a wide birth/cold shoulder for a lengthy period. I think the approach he took showed real maturity and I felt a glow of pride.

Our week also taught me that it is not just talking at the fundamental level of getting our most basic needs met that is crucial. Talking is also crucial to keeping us mentally well. Other guests we had were carrying other issues and when I say carrying them, I mean lugging about a massive sack of stress, hurt and grief wherever they go. The difference, I think, between that massive sack dragging you further down or you being able to get on with your life despite it, seems to be your ability to talk about it. The person who internalises or who does not have an available/ safe outlet for their worries and feelings is in danger. I know that sounds a little dramatic but I genuinely believe it’s true. There is a lot on social media at the moment about suicide prevention and all the statistics around the issue. It’s worrying.

Talking helps people take things out of their massive sack. Issues can become less, opinions can be sought, advice given, soothing words or hugs dispensed. Talking doesn’t make things go away but sometimes it can give perspective, space or a fresh view point. Things tend to multiply or expand or metastasise when left in the sack. Talking can curb things, keep them in check, prevent them taking on a life of their own.

On face value, one of our guests maybe seemed to have a lot of issues. They told me a lot of things. They seem to have a lot to worry about. However, I know that another of our guests, who said nothing, also has a huge sack of issues. It’s the one who said nothing that worries me. The one who talks spills the contents of their sack at regular opportunities and I’m glad they do. They have hard things to cope with but they’ll be ok. The other one, the one who doesn’t talk, I worry about them. I don’t know if they have that safe outlet, that trusted person, that someone who will just listen. I don’t know and I think their lack of being able to talk, even though they have the communication skills they need, is a red flag. I suspect it is not being viewed as such by people around them – they do not appear upset, they aren’t saying upset things ergo they must be fine.

Whilst talking is crucial, so is listening and both are required for mental wellness. I know many people who think they are good at listening but few who genuinely are. The best kind of listening is not just done with the ears; it is about observation, reading between the lines, hearing the unsaid. It is the ability, or maybe the willingness, to see beyond what is presented. I suppose it is about connection. I suspect not everyone thinks they have the time.

I also suspect that people don’t always think the same level of observation and alertness to emotional wellbeing is required for children; that somehow children are just fine. They aren’t and the ways they manage, or don’t manage, their feelings and worries and grief will follow them into adulthood and shape their future selves. This whole talking thing needs to start as soon as possible.

Sometimes I wonder if I’ve got too wrapped up in adoption and the issues it brings. None of the people who have been here this week are care-experienced. They are not adopted yet they have experienced trauma. I guess I’ve been reminded that we don’t know what sacks people might be lugging with them; these cumbersome burdens are often invisible. The emphasis is on us, as fellow human beings, to be alert, to look beyond appearances, to actively observe and skip the snap- judgements. Talking is crucial but so is hearing the unspoken.

It has been a funny old week.

 

 

 

Talking is Crucial