Speak Up For Communication

With absolutely no mention of decorating downstairs toilets this week, I am back talking about the serious matter of children’s speech, language and communication needs – SLCN.

Last year, I wrote this post – Ensuring Children’s Speech and Language Needs Are Met: A Call to Action– about The Bercow10 report – a damning reflection of the state of speech and language therapy services in the UK and the enormity of unmet need. RCSLT and ICAN last week began a new campaign highlighting the changes that have been successfully brought about in the year since Bercow10 and asked for renewed efforts to speak up for SLCN.

Of the 47 recommendations made in last year’s report, 17 have already been fully actioned, which is a promising start.

You can see some of the key successes here:

Bercow10 key successes

I mentioned the petition begun by @GillianRudd at the end of last year’s blog post. Following an incredible effort, this was successful, gaining 11,622 signatures and leading to a debate in Parliament. The government have stated they are committed to meeting the needs of children with SLCN, and Teresa May herself has committed to change during Prime minister’s question time.

However, there is widespread agreement within the speech and language therapy profession that this is not enough. Budget cuts have decimated speech and language services up and down the country. Yesterday, there was an article in the Daily Mirror about children languishing on waiting lists for as long as a year before getting any sort of meaningful help (see Mirror Article). The NHS department I used to call my professional home no longer exists – its contract having been lost to a private provider – and those children I work with in independent practice talk of long waits, minimal input and quick discharge in their NHS services. I never thought I would have to end up working privately to be able to give children the quality therapy they deserve and part of me is still saddened by it, not least because private services are out of reach for so many vulnerable children who need them.

Pressure on NHS speech and language therapy departments has been growing over a number of years, with an increase in need and a decrease in funding. Clinicians are under pressure to move children through services as quickly as possible and to be inventive with the budgets they do have. The department I worked for, put a heavy emphasis on others, such as speech and language therapy assistants and teaching assistants, carrying out therapy with children. This was part of being ‘lean’ and making savings but ultimately I think it has devalued the work and knowledge of speech and language therapists and contributed to the demise of services. We also worked to an ‘episodes of care’ model, in which children were seen for a block of therapy to target a specific aim and then discharged, with the plan for them to come back again when they needed more. Although this was effective for some children – the ones whose parents or school would make sure they did come back – I’m sure it put vulnerable children with poorer support networks at increased risk. Although the service was designed for children to come in and out of, I think it gave the message to some people that nothing else could be offered and that children’s needs had resolved, where they hadn’t, and were unlikely to for their lifetime. In trying to be frugal, I suspect some services have inadvertently misrepresented the severity and long-term nature of some SLCNs as well as lessening children’s chances of getting the additional support they needed at school (funding is difficult to justify if a child isn’t actually under any external services).

As it stands, Little Bear has also been discharged from speech and language therapy. He too could be re-referred but that would require energy I’m not sure I have. I would need to prove his needs were severe enough to get through referral criteria and no doubt start back at the beginning of the initial assessment to waiting list process again, which took a year last time. He clearly does have ongoing needs – he has Developmental Language Disorder – but proving the daily impact on him would be difficult now his needs are more subtle. Like any parent of a child with SEND, I am already pretty stretched with managing behaviour, seeking funding, trying to get school to understand his needs etc. etc. I’m not sure that I should have to jump through hoop after hoop to get him the help he needs. Yet I would have to. And so too do parents of children with SLCN in all corners of our country.

For me, it has been far easier to create a speech and language therapy programme for Little Bear myself and to train his TA to carry it out myself. Clearly this is a perk that other parents cannot rely on.

The majority of clinicians want what’s best for children and many are deeply frustrated by the limits of the services in which they work. In an unprecedented move, RCSLT and ICAN wrote an open letter to government last week, asking for SLCN to be given the attention it deserves. It was countersigned by 60 organisations, ranging from Autism charities to fostering and adoption charities, who share a deep concern about the future of children with communication difficulties. You can find it here: Open Letter

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Five key areas requiring change have been identified as priorities for action and are the five areas the open letter asked the government to act upon. They are:

Joint commissioning of Services – as SLCN impacts upon children’s emotional wellbeing, education, future employability and likelihood of involvement with the criminal justice system, a joined up approach to meeting need would be ideal. It is hoped that this would also help to iron out the postcode lottery which currently exists in the provision of speech and language therapy services.

Long-term support for SLCN – although support has improved in the early years, support for the 10% of older children and teenagers who will have ongoing needs continues to be poor.

Professional Development – there is a pressing need for all teachers and those working in the field of childhood mental health to be aware of SLCN and the many ways it might present. Professionals need to be able to identify SLCN and be aware of clear pathways to support.

Incentivising schools – budget cuts are impacting on education settings too. In these times of reduced funding and fewer EHCPs, it is imperative that schools are supported from the top down to identify and meet SLCN. The anniversary report asks for provision for SLCN to be considered during Ofsted inspections.

Supporting vulnerable groups – as children who have been excluded from school, those in Care, those with mental health difficulties and those who are involved with youth justice are more likely to have SLCN and are more at risk of their needs going unidentified, improvements need to be made to the support available for these groups as a priority.

This is the main area where I have tried to make an impact – providing training workshops for adopters and prospective adopters to arm them with knowledge of communication development; how to identify red flags and what to do to best support SCLN at home. Myself and another speech and language therapist adopter have also written a social communication group specifically for children with trauma backgrounds which is currently being advertised. It is good to see that work is beginning to happen with children who have experienced, or still are experiencing the Care System in other areas, and training for speech and language therapists in this previously neglected area is becoming more common too.

There are pockets of hope but in short, our work is far from done. RCSLT and ICAN are asking for our ongoing activism. We need to continue speaking up for communication and for children with speech, language and communication needs. We cannot stand by and do nothing.

If you would like to help, here are some things you can do:

  • Use the hashtags #SpeakUpForCommunication and #SpeakUpForSLCN on social media
  • Make a Vox Pop clip to pledge your commitment to speaking up for SLCN and share on social media (advice here: Vox Pop Guidance ) . I’m still pondering how I can get involved with this anonymously…
  • Visit the website here: www.bercow10yearson.com where you can download speech bubbles and get tips on other ways to join in
  • Write to your MP, or tweet them. Are they speaking up for communication? They are our representatives in Parliament – we need them to know about SLCN and Bercow10. We need them to speak up most of all.
  • Retweet and share this blog
  • Tell anyone who will listen about SLCN

Perhaps if we all shout loud enough, real change will happen.

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Speak Up For Communication

Stop. Collaborate & Listen.

No, Ice is not back with his latest invention, it’s just me, yattering on about relationships between home and school again.

Since Little Bear started school we have had our fair share of concerns (see School WorriesSchool-Parent Partnership and Dear Teacher ). We have worked hard to overcome them as best we can and around this time last year I wrote Alleviating School Worries about some of the positive practical changes that had been made.

A pattern seems to be emerging now where the first part of a new school year is hard work, stressful and leads us to the brink of crisis before we somehow manage to get school to listen and things improve considerably. The improvement part is fabulous and more of a relief than I imagine when it finally happens. The fact we have to go through the hard bit first, not so much.

We worked extremely hard on Transition this time so I don’t honestly know what else we could have done differently to avoid the tricky bit. It feels as though no matter how clear we are and how much we labour the specifics of Little Bear’s needs, the new teacher doesn’t hear us until they have experienced what we are talking about for themselves. It’s as though they need to approach him in the way they think (taking our information with a pinch of salt), using the strategies they usually use, only to find out the hard way that his behaviour will escalate. They then cynically have a go at the things we suggest, leading to a miraculous transformation. At this point, they seem to start listening a bit harder.

As you can see, I don’t have all the answers and I don’t know (yet) how to prevent this pattern. However, along the way we have learned a lot about developing the relationships we need with teachers and making change happen. I thought it might be useful to share some thoughts and ideas:

Things for teachers to think about

  • Parents of children with additional needs of any nature, but particularly adopters, are often a vocal and knowledgeable bunch. You might find we e-mail more, ask for more meetings and try to talk to you more than the average parent. I understand this is time consuming and potentially a little full-on. Please try not to run a mile or hide under your desk when you spot us coming. The best way to tame the over-involved-parent beast is to talk to us. If we see that you are listening and that you want to work with us, we will be a lot lower-maintenance.
  • (The little chat I’ve made a point of having with Mr. Teacher at the end of each week has made a huge difference to our relationship and to his understanding of Little Bear.)
  • Please don’t interpret our involvement and commitment as ‘over anxious parenting’. We think working in partnership is best and that laying the groundwork before problems arise is preferable to waiting for crisis (We’ve been there before, it isn’t fun).
  • Unfortunately, if you don’t respond to our e-mails and won’t meet with us and won’t consider other ways of doing things, we are left with no other options than to escalate our concerns to the SENCO/Head/Board of Governors/Virtual School. This isn’t meant as a threat. We don’t really want to do these things – it’s a hassle/it takes time/ it takes emotional energy we don’t always have – but we will because parenting is about being a voice for our child when they don’t have one and if we don’t fight for them, who will? We won’t be quiet and we won’t go away. It’d be so much better for all of us if we could do this the easy way: together.
  • When a child challenges you in your classroom with their behaviour, please don’t automatically assume it is due to ‘parenting’. Familiarise yourself with the child’s history; read their file, talk to other staff who know them. Is there trauma in their background? Do they have speech and language needs? Do they have attachment needs? All of these things could be the root cause of difficult behaviour.
  • If you are unsure how to support a child or your usual methods aren’t working, that’s okay. Parents are often experts in managing their children’s behaviour and we have many, many tricks up our sleeves. Ask us. We won’t think you’re crap at your job, we’ll feel valued and respected as the people who know our children best. If you are having moments of feeling out of your depth, we probably are too. Let’s work together.
  • Some of the strategies we talk about (especially for children with developmental trauma) might feel counterintuitive and opposite to the things you usually do. Please be brave and try them. Give them a good go, because once or twice isn’t enough. If you want to know more about the theory behind the strategies, we can point you to sources of information. Even if you don’t ask, there is a high likelihood we’ll be printing things off and giving them to you anyway. We’re sorry about that but getting things right for our children is kind of important to us.
  • If a child comes to your class with a visual timetable/social story/ communication aid/ calm box/worry monster/ chewy tube/ sensory diet/ other useful item, please get it out and use it. These things do not work in cupboards or drawers. If you’ve given it a good go and it doesn’t seem to be meeting its aims, talk to us about it. Maybe we could come up with a solution together.
  • Children will not learn in your classroom if they don’t feel safe and secure. This isn’t my opinion; it’s a fact. If a parent, or a child themselves, lets you know they aren’t feeling happy and comfortable in the classroom, try not to take this personally. Our children struggle to form relationships with all new people – it is not a reflection of how nice a person you are/aren’t (though I understand how it can feel like that). I understand why learning a child is unhappy in your classroom might make you feel defensive. Please see that it is not a personal attack. Also, if anyone understands how uncomfortable this feeling is, it’s us. Imagine how rejected and impotent you would feel if your child didn’t feel safe and secure at home, with your parenting. We’ve been there and felt that. We totally empathise.
  • However, it is a problem and in order to fix it, you will need to accept that the child isn’t feeling safe. Telling parents that a child is behaving in a certain way ‘for their benefit’ or ‘to get attention’ or ‘to manipulate adults’ isn’t okay or helpful. Instead, ask, ‘what could be done differently to help them feel safe?’ and be open to the suggestions that are made.
  • A child will feel safe in your classroom when they feel safe with you and in the relationship that you have. Get to know them and their individual likes/dislikes. Is there something you could bring in especially to show them? Could you give them a special job or responsibility? Could you find 5 minutes each day to spend 1:1 with them? Part of feeling safe in a relationship comes about when a child is really clear about what your boundaries are and knows what will happen if their worst behaviour spills out. Ideally they will know that you will be in charge even when they lose control; that you will be calm and that you will still like them. Often the only way they can find this out is by testing your boundaries. Expect some challenges. Don’t panic. Be firm. Consider your strategies carefully: avoid punishing dysregulation. Consider calm-down time and giving the child a break (in a physical sense of letting them use a quiet corner). Talk with them afterwards. Wonder aloud as to why they may have acted as they have. Empathise. Remember to separate behaviour from the child themselves – it is imperative we don’t shame children who already feel worthless. If in doubt, imagine you are them: consider the incident through their eyes.
  • (Little Bear’s teacher coming out of his classroom door in the morning and having a bit of ‘banter’ with Little Bear has made a huge difference to him going into the classroom. It’s a small thing but it’s completely overturned school refusal.)
  • I understand that it is difficult to cope with a child with social, emotional or mental health difficulties in your already busy classroom. You are already working hard trying to balance everyone’s needs with the demands of the curriculum, meeting targets etc. Our children needn’t be another challenge: with the right support they are pure potential. With the implementation of a few strategies and tweaks to your approach, you could be the difference in our child’s education.
  • (Now that Little Bear is back on track, he is on target for making more than a year’s progress in year 2. That’s amazing.)

Things for parents to think about

  • Be as quick to praise the good as to highlight problems. We are a vocal bunch and it’s only right that we expect a high standard of education for our children. However, let’s not be moaners or doom bringers. Let’s save our complaining for when it’s needed and be fair about it. Let’s balance our complaining with positivity: when school get something right, tell them. They need to hear the praise and affirmation as much as any of us.
  • As frustrating and upsetting as our interactions with certain teachers can be, always stay on the moral high ground. If we want to be respected as professional parents, we need to act professionally. I have sworn and cursed and badmouthed in the privacy of my own home but never anywhere else. I have been direct and I’ve shared my feelings but I have never been rude, raised my voice or been in any way offensive. If we hope to achieve good working relationships in the future (surely, always the aim?) we need to be careful not to do anything that would cause irreparable damage to those relationships. For that reason I think it’s wise to avoid venting our spleens in Whatsapp parent groups or Facebook groups or on the playground. Firstly, it’s not cool. Secondly, these things have a tendency of getting back to teachers and head teachers. Thirdly, why do anything to jeopardise the relationships we are working so hard to build?
  • (Note to self: be extremely careful when blogging!!)
  • I think the key to getting good relationships with school is communication. I’ve found that e-mail is not a great medium. Often you don’t get a reply which is pretty irking. When you write the email it is difficult to pick your words correctly so as not to leave anything open to misinterpretation. I certainly think I’ve caused defensiveness (totally unintended) with some of my attempts. I have now ditched email in favour of a face to face chat. I’m particularly partial to a playground ambush!
  • It is tempting to stop chatting when things are going ok. I think there is a danger in this that the teacher begins to associate a chat with you with a problem; further compounding their desire to avoid you. I think it’s good to keep up the chats and to be able to have really positive ones – they make everyone feel better.
  • Don’t be scared of spelling things out. I am an increasingly big fan of directness. Previously I have assumed it is obvious how I might be feeling but it seems it isn’t. I sent one email to Little Bear’s school team saying, “When you don’t ask our opinions or include us in big decisions, it makes me feel as though you don’t value our expertise as parents. This is upsetting because we believe that working together is in the best interests of LB.” This was swiftly followed by an apology from school and the penny seemed to drop about why I was ‘fussing’ again. People are busy; they probably don’t have time to stop, think or notice. It’s ok to explain how you feel.
  • Teachers are humans too. We need to remember that they don’t just have our little darling to think about but at least 20 others as well. They have ridiculous demands on them to meet this, that and the other standard and every professional who comes in asks them to do something else in addition to the myriad things they already do. I don’t think it hurts to acknowledge we are aware of this. It isn’t going to stop us asking them to put things in place for our children (they are our priority after all) or to give us their time but we can be thankful and empathetic when they do.
  • (I am genuinely grateful that Little Bear’s teacher found an hour and a half for me yesterday after being in school on Monday evening for a writing exhibition, having his class in the music afternoon yesterday and then needing to build a stage after I had gone for next week’s nativity, and I told him so. He has a home to go to too.)
  • As much as we want teachers to respect us and our knowledge of our children, we need to respect them. I’m not a teacher. I don’t know all the ins and outs of the curriculum or the different methods of teaching Maths. Ideally they bring their knowledge to the table and we bring ours – kind of like a bring and share work lunch. We aren’t aiming for us and them, we’re aiming for us.
  • I strongly believe that a consistent approach across home and school is the most effective way of supporting our children to feel safe and to reach their full potential. This is what drives me to keep politely approaching the teacher, keep repeating the same points, keep coming up with possible solutions even when I actually feel like crying or slapping somebody.
  • Remember to practise self-care. This whole managing school malarkey can be really bloody hard work. A bad drop-off can set a worrying tone to the whole day. You do need confidants who are safe to vent to (maybe people who aren’t involved with the school) and you do need to look after you. You can’t afford to run out of energy because who fights the fight then?
  • I also think it’s important to keep the Big Guns up your sleeve for when you need them. Don’t underestimate how exhausting this can be and how alone it can make you feel – like a tiny whisper standing up to the behemoth that is school. Sometimes it gets too big to do on your own. Don’t be frightened of bringing someone with you to meetings. I tend to wheel Grizzly out when I’ve had enough – he isn’t frightened of being extremely direct and sometimes that’s needed. I also know that we’ve got the post adoption support service there if we need it and we have called on them to be in meetings when things are going awry. Unfortunately, schools can be more likely to listen when the person telling them is a professional. That doesn’t make us feel good but as long as the message gets across, we need to not concern ourselves too much with how.
  • Equally, if you aren’t sure what is going on in the classroom and you have some concerns, getting another professional that you trust in there can be really effective. Many professionals (speech and language therapist/ OT/ educational psychologists) do school observations as part of their work. I know that when the speech and language therapist did an observation as part of her work with Little Bear, the feedback she was able to give me was really enlightening.
  • Ask for regular meetings and always book in the next one at the end
  • Make notes and keep your notes
  • Ideally have a home-school book for day to day information. We’ve had a few discussions about the type of information that is needed in there – “LB found it hard to sit still during the English lesson on expanded noun phrases” is a lot more useful than “good reading”.
  • Keep the faith. It is never too late to turn things around (though I totally see that in some situations the only solution is a different school or home-school. I don’t see that as giving up, but finding a workable solution)

 

I’m very sorry for another lengthy post. I promise to write something short and sweet next week 😉

Stop. Collaborate & Listen.

Play

The other day I noticed both Bears playing together in a way I hadn’t observed before. Little Bear had built a new Lego set, an air ambulance, and had somehow managed to convince his brother to play with him. Not only that but he had convinced him to include his new Lego set, a superhero ship with Ant Man in it, and the two of them were caught up in some sort of imaginary world that involved Lego men living in an Egyptian sarcophagus, daring rescues and the occasional mention of a ninja. The game moved around the house, obviously, because helicopters and spaceships do fly and baddies will insist upon moving their lairs.

It felt noteworthy for a couple of reasons. Big Bear has hitherto been very cautious about his possessions around Little Bear, generally keeping new or precious things safely stowed in his bedroom with its securely lockable door. There are now days when he leaves the door open (a MUCH bigger deal than you would imagine and one we are pretending not to have noticed for fear he will shut it again) and days when he is more relaxed about his stuff. The fact that he had just built something new and was willing to play with it in the same game as Little Bear really showed how far the Bears have come in terms of trust and respect for one another.

I wondered why they hadn’t played similar games before with Little Bear’s toys (he’s only too happy to share with his brother) but realised it was because until very recently, this year anyway, Little Bear couldn’t have played those games. He wouldn’t have been able to follow the storyline or formulate appropriate dialogue to be able to join in, however much he might have wanted to. The leaps he has made (and continues to make) with his language development have unlocked a whole new world for him in terms of imaginary play. Not only that, but his ability to concentrate and to engage in more complex games has really developed too.

It has got me reflecting about play in general and the changes we have seen over the nearly three years Little Bear has been with us. I’m going to talk about play in developmental stages. There are various ways play development can be categorised but I’m thinking mainly about symbolic play/ imaginative play rather than social play. There are several different terms for each of the stages that can be found in literature on the subject but this is the version I personally find the most useful.

Exploratory play

This is the first stage of play to develop (in typical development) when infants pick things up, drop them, chew on them, throw them, bang them together. Children are exploring tastes, textures, weights, sounds, wetness/dryness etc. They tend to be fascinated by anything and everything, not necessarily things you traditionally consider to be toys. It’s their first attempts at engaging with the world around them and they want to experience everything.

I suspect that many children who have adverse starts in life don’t have enough experience at this stage. If you spend too long in a cot or pushchair or highchair without any stimuli, you won’t be able to explore the world around you in the way you should. Being neglected at this stage robs a child of the experience they need to assimilate their senses. It is hard to learn to differentiate between hard/soft, wet/dry, hot/cold, rough/gentle if you don’t have any experience of feeling/touching things. I suspect that many sensory integration needs have their root in neglect at this stage.

When we met Little Bear, aged 3 and a half, much of his free play happened at this level. We spent a lot of time splashing in water and digging in sand. I also spent a lot of time telling him not to throw things or touch things that I would have expected him to know not to touch. There is the time he tried to lick a snake, the time he played in the toilet water and the time he smashed all the hens’ newly laid eggs. I genuinely believe Little Bear was still trying to assimilate all the sensory information he was getting from his environment and can only assume he hadn’t had enough time exploring (safely) when he was younger.

I had to make conscious efforts to offer him plenty of opportunities to engage in tactile sensory activities whilst teaching him some boundaries to keep him safe.

Water, the sand pit, kinetic sand, play doh, baking, not concerning ourselves with cutlery and turning a blind eye to him laying down prostrate and ‘swimming’ in gravel were the key, alongside exposing Little Bear to a wide range of ‘normal’ play experiences.

Pretend play with real objects/ oneself

The next stage of play is when children begin to show an understanding of what everyday objects are used for e.g. they might pretend to drink from an empty cup or babble into a pretend phone.

The thing about children who have been neglected is that their development is pretty patchy and though Little Bear had gaps at the exploratory stage, he did know what everyday objects were for and could pretend in this way already. He was certainly partial to a phone, even though his language skills wouldn’t allow him to have much of a conversation.

Large doll play

It isn’t usually long before children begin to relate everyday objects to each other and to their other toys. This is when they start to ‘feed’ their teddies or get them dressed.

We are pretty partial to a teddies tea party in our house and I can remember Little Bear being a bit bewildered the first time we got plates and food out for his cuddly animals. He soon picked up the idea though, often dolling out real biscuits for the animals and taking the opportunity to have some himself.

I found this stage useful for modelling behaviours and exploring some of Little Bear’s behaviours in a less direct way. Sometimes I would make the animals do things he had done or that we were finding tricky and it was interesting to observe how he dealt with them (he often took the role of parent). We also did it in a way that took the heat off Little Bear. Sometimes it was his rabbit who had been shouting or throwing things or saying rude words and we would ask Little Bear to have a word with them and teach them how to be sensible. He loved this responsibility and getting the rabbit to behave often mysteriously led to improvements in Little Bear’s own behaviour.

I’m not sure whether the last paragraph is more about developing play or exploiting the stages of play but still. Occasionally it worked the other way and Little Bear would express a fear or a worry through the voice of his animals, which was useful too.

Sequences of pretend play

Over time children begin to put several bits of play together so they might play with their toy kitchen and act out making dinner, feeding it to their doll then washing up.

I would say we were working at this stage alongside the previous one and exploratory play when we first met Little Bear and for the first months afterwards. That is the thing with child development; it is often not neat and linear, but skills overlap and appear at different rates. I think that children who have had difficult starts are more likely to have a muddled developmental profile and I can honestly say we could go from working at a 6-12 month level in the morning to approx. a 3 year level in the afternoon then back to an 18 month level again. It was hard to keep up with but imperative to match Little Bear’s level as best we could. There is no point trying to work to chronological levels when your child needs something much different. Little Bear would not have been able to reach the places he has reached had we not filled in the gaps.

The main sequences of play we engaged in a lot involved Little Bear pretending to be a superhero. We did a lot of dressing up, building dens and pretending we were in peril. He seemed to love it and it was great for extending his world knowledge and vocabulary.

Small World Play

At this stage children transfer their play skills into miniature representatives of the types of games they have already been playing. They might start playing with a farm or Duplo or Playmobil and doing some basic pretending.

I know we weren’t ready to play at this level when Little Bear first arrived. I distinctly remember trying to introduce him to Duplo but he lost his temper within the first nanosecond because he couldn’t get the man to sit in the bus as he wanted. You would certainly expect a typically developing three year old to be able to play at this level but it would take months of exploratory play, building resilience and bigger, more physical play for us to be ready to try again.

I think it has been the development of Little Bear’s attention span and his resilience to persevere through knockbacks and failed attempts that has allowed him to engage in small world play and crucially, enjoy it. I find it uniquely pleasing to observe.

Little Bear has always had a good imagination, that was clear from day 1, but it is only at some point in this past year (he’s 6 now) that everything has come together to allow him to explore it in his play. Play stages and language development are very much aligned so it shouldn’t really be a surprise that it is the point at which he has gained linguistic competence that he has also developed complex play abilities.

Play develops from here on in, becoming more complex, with longer, more detailed scenarios panning out. The Lego game that I observed the boys playing at the start of this post epitomised the progress Little Bear has made – playing a small world game, with tiny fiddly pieces that require a heap of resilience, making up an imagined scenario, adding appropriate dialogue and crucially negotiating and listening to his brother so that they could both be in the same imagined place, at the same time, contributing to the same scenario. It is standard kid stuff on face value but it is so complex and requires so many pre-requisite skills that it really is a feat of development.

I should really give Lego its own special mention before I finish because we love Lego in our house and also because it alone is a good indicator of how Little Bear is doing.

Big Bear had a premature love for Lego, getting into it from age 2.5 and loving it ever since. Given Little Bear’s disordered/ delayed development he wasn’t going to get into it anywhere near as young. I think he was about 5 when he could first start to tolerate building a simple model with a high level of adult support. I remember worrying because he really struggled to scan the tray to find pieces he needed let alone being able to follow the instructions. As with everything, we have practised and persevered and Little Bear has developed his skills quickly (once he overcame the initially difficulty). This week he chose to spend his holiday money on a sizeable Lego model of a dragon. It has an 8-14 age recommendation and he has done brilliantly, followed the instructions well and built the majority of it himself with just a little adult support.

What are my conclusions? Well, Little Bear is something of a legend but that is often my conclusion. Play has played a crucial role in his development and is very much intertwined with language development. Play has to happen in developmental order. You can’t skip bits willy-nilly; whichever stage a child is at, that is where you need to meet them. Development doesn’t happen overnight; stages take as long as they take. Developmental delay is never hopeless. Progress can and does happen and we should be aspirational for our children, no matter their start in life.

 

 

 

 

 

 

Play

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

Dinner Winner

I have decided while I Am Writing to post some shorter blog posts for a few weeks about some products we have bought recently.

This week’s product is the Dinner Winner plate made by Fred.

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 Meal times have always been a bit tricky here, ever since we first met Little Bear. I suspect his development was disrupted around the weaning stage and when he first arrived I probably should have gone back to basics with introducing solids and different textures. He was over three at that point though and I was pretty distracted by many a pressing behaviour challenge. I did do purees for him and I have fed him on and off since.

Little Bear is six now and at mealtimes, especially tea time when he’s tired, he tends to mess with anything and everything but doesn’t focus his energy on eating. He will clamber over the bench, fiddle with his cutlery etc. but not touch his food. It has always driven us a bit mad but we have tried to be patient and to feed him if that’s what he needs.

I wasn’t looking for another solution but a few weeks ago I was flicking through a therapy magazine and came across these Dinner Winner plates. I immediately felt it would be worth a try because it is essentially a visual support for eating your meal. It evidently struck a chord with the speech therapist in me: it’s such a clever and practical idea and I couldn’t believe I hadn’t seen one before. We found you could buy them on Amazon and one was with us the next day.

There are lots of designs but I chose the superhero one as I felt Little Bear would like that one and it was a bit more grown up.

On the first day, the plate worked like a miracle. Little Bear LOVED it, especially the fact that there is a compartment with a lid for you to open at the end of your meal and hopefully find a treat. I explained to him that you start at the beginning and eat one compartment at a time. There was a risk Little Bear wouldn’t care about the order but he took that aspect very seriously and finished his dinner in record time. I don’t want him to rush but tea it is usually a very lengthy affair so this was a clear improvement.

The second day was similarly wonderful. After that, the novelty wore off a bit. However, I can honestly say that though the plate hasn’t delivered a miracle it has certainly improved things significantly. I think Little Bear is much less prompt-dependent now. Previously I had to prompt every mouthful or load his fork for him but now he does often feed himself the whole meal, without prompts, just with a bit of dithering between compartments. I now wonder whether seeing a whole plate of food was overwhelming for Little Bear and he was having difficulty breaking the task of eating into parts. The plate has done that for him and one compartment at a time is not overwhelming. Also, when one has gone, counting the remaining compartments gives a natural countdown to being finished which seems to help Little Bear with seeing an end to the task. Sometimes we are winning at dinner.

I don’t think the treat at the end would be appropriate for all children, depending on their issues with eating but it does work for Little Bear. One chocolate button seems to be motivation enough.

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On a practical level the plate requires a bit more preparation from me. I tend to serve his food onto a normal plate to check I’m giving him the right quantity and then I need to chop it up and divide it between the compartments. It is a bit more faffy but I feel as though it is worth it. The first meal he had on it was baked potato which obviously had to be modified a bit more than usual!

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Overall I think it’s a fabulous piece of design and a really clever use of visual support. I would definitely recommend it and this is not one of those blog posts someone has paid me to write!

As an added bonus, Little Bear practises his reading on the words written in the compartments. It’s a big thumbs up from me and my little dude.

 

Dinner Winner

Fantasy versus Reality

Little Bear has been everywhere, man. He really has. He has been to America, Spain, the Eiffel Tower, Australia, the jungle. He has even been to Paradise. Any country you can name, he has been there.

And the things he has got up to! He’s wrestled sharks, ridden elephants, punched President Trump in the face and even witnessed the death of Princess Diana. Many people have tried to harm him along the way but he’s killed them; or punched them in the face at the very least. He’s very strong. SUPER strong. In fact, probably stronger than Batman or maybe even the Hulk. And he’s got guns. A whole arsenal of them. He’s taken out many a good man.

And he has two Fathers, but sometimes one is dead. His Father is also VERY strong. He can do ANYTHING. He has fast cars. He’s encountered a plethora of sharks, tigers and poisonous spiders himself.

Oh, and did you know Little Bear has a special car? One that can fly to heaven and bring people back from the dead! He quite often pops there and back in the day apparently. And all those songs you hear on the radio? Little Bear sang those. And all the sportsmen on the television? Little Bear.

As for that school he attends! Well, there are frequently brawls in the classroom and the teacher seems a right one for throwing the first punch. Sometimes the Head teacher joins in. Sometimes they do PE on roof. And they hardly ever feed them lunch.

Apparently.

According to Little Bear, anyway.

I wouldn’t describe it as lying, because Little Bear thinks these things are really true. I think I would describe it as a very fertile and fantastical imagination. Most of the time, Little Bear’s high tales are very entertaining and I’m sure that when he is a little more adept at writing, he will be able to conjure up some amazing stories. Perhaps he will be an author, or film-writer; he certainly has the creativity for it.

It does have its drawbacks though. It is virtually impossible to know when he’s telling the truth, especially as he seems so good at convincing himself that things that haven’t happened really have. Due to that he can get genuinely annoyed with you for saying something isn’t true (even though it very clearly is not) as he is so bought into the idea. We can’t rely on reading his responses because his own position of what he thinks happened is so skewed.

Most of the time, I don’t attempt to call him out on his stories. The only parallel I can draw (and please bear with me as it is a bit dubious) is that if somebody had confusion (Dementia) and kept forgetting things, you wouldn’t continually tell them they were wrong and draw attention to the forgetting and the repeating. You would just go along with them so as not to upset them. There would be no real benefit to either of you to insist upon correcting them.

It feels the same with Little Bear and his fantastical tales. What does it matter if he claims to have met the Queen or have been on a midnight adventure with a friendly lion? It doesn’t matter and there is no harm in it. To be honest, we mostly find him hilarious and he often takes us by surprise with a new, even wilder tale. The story-telling is part of his charm and we wouldn’t want to discourage it.

However, it is essential that, as he gets older, he does learn to know the difference between truth and lies and that he can be relied upon to tell the truth (even if he still likes some fantastical escapism). There are times therefore that I do call him out and label what he has said as a lie. This tends to be when he has said something that sounds more like an accusation or relates directly to one of us. For example, he does have a tendency to say that people have hit him when they blatantly haven’t. I could sit with him and a grandparent or Grizzly the whole time and despite me having seen everything, he might still claim that somebody present hit him. It’s not generally malicious, more that things just come out of his mouth and sometimes he can be purposefully provocative.

At these times I will call out the lie. I will say “you shouldn’t say that Little Bear, because it didn’t really happen. It is a lie.” I generally go on to explain what the possible consequences of telling the lie could be e.g. the person you are saying hit you could get into a lot of trouble with the Police. Occasionally, over recent weeks, when he has a made a wild claim and I have asked him whether it is true or not, he has sometimes admitted it is a lie, which is reassuring and shows he is starting to develop some awareness.

Obviously I have no idea if this is the right way of handling it, I’m just following my instincts (AKA making it up as I go along).

I have to admit that I have also duped him into telling me he’s lying sometimes by convincing him that our noses really do grow like Pinocchio’s when we tell an untruth. I have no idea what possessed me, it’s a very un-me thing to have done, but I’m reluctant to reveal the truth just yet as sometimes Little Bear will make a bold claim then a few seconds later say, “has my nose grown?”. Then I know I’ve got him. It’s the only time I can be certain he’s lying. It’s quite useful for situations such as ‘have you washed your hands after the toilet?’ where you really do need to know the right answer.

Don’t worry, the irony of me lying to him about his nose having grown is not lost on me in a blog about lying! I have to be a little bit wily though otherwise I would be constantly outwitted by a five year old.

We have discussed this issue with school and with PAS. Not because we are really worried about it but because school obviously experience it too – apparently Little Bear’s account of our summer holiday began with the boys enjoying the sea in their wet suits and ended with some sort of killer shark massacre.

The conclusion we have drawn is that Little Bear is in a developmental phase that would usually happen earlier. A quick bit of research suggests that typically developing 2 and 3 year olds lie frequently and spend a lot of time exploring the boundaries of fantasy/ reality. Most studies seem to suggest that around 3 is a pivotal age for being able to separate your imagination from real life.

Little Bear has such a spiky profile that it is quite possible that this is the level he is functioning at for this particular aspect of his development. We do wonder though how much this has been impacted by his language difficulties and whether he would have been able to move into this phase earlier had he have had a wider vocabulary at his fingertips. His language skills have leapt forwards again recently; perhaps this has allowed all those thoughts and ideas that have been in his brain for a long time to finally get out?

Often, when he is telling his tales, I am not worrying too much about the content but am marvelling at his fantastic turn of phrase and narrative structure. Only a Speech Therapist would say that, obviously, but nevertheless, I stand by it as a year ago, when he started school, Little Bear really struggled with those reading books without words that require you to make up one sentence to describe what is happening. And here he is, using words like ‘return’ and ‘sadly’ and ‘supposed’ and structuring a whole story that is cohesive and makes sense. It’s incredible really.

Whilst I do think this is likely to be a developmental phase, I came across something else today that really resonated. I was reading the Coventry Grid*, a resource developed by Heather Moran, to pull out the differences between the presentation of children with Autism and those with attachment difficulties. In the ‘mind-reading’ section, there is a subheading of ‘problems distinguishing between fact and fiction’. Here are the descriptors for children with attachment difficulties:

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I’m sure you can see why it resonated. Who knew that this type of presentation could be another result of a neglectful start? Adverse Childhood Experiences (ACEs) have so much to answer for I’m finding; their effects being so pernicious and wide-ranging.

It also amazes me how much there is to learn about our children and despite reading a lot and thinking about Little Bear a lot and writing about him a lot, I am still learning new things and continuing to grow in my understanding of his behaviour.

 

 

*The Coventry Grid is an excellent resource that I would highly recommend. You can find it easily on Google.

I don’t actually spend all my days reading sensible things; I was working at the time. I was interrupted by a giant anteater appearing from my computer screen though. It sipped my tea with its long snake-like tongue before engaging me in a sword fight. I won.

 

Has my nose just growed?

 

Fantasy versus Reality

Developmental Language Disorder

As both a Speech and Language Therapist and Mum to a boy with Developmental Language Disorder (DLD) this is a subject close to my heart. This week is DLD Awareness Week and tomorrow, the 22nd September 2017 is DLD Awareness Day. Through this blog I want to make a small contribution to raising awareness of this poorly understood condition.

Although DLD has been recognised as a condition for a long time, its name is new. The condition has previously been known as Language Disorder or Specific Language Impairment (SLI) but everybody used the labels differently and the lack of consistency wasn’t helping with making people aware of it. There is currently an awareness raising campaign taking place which is brilliant. There are more children in the UK who meet the criteria for DLD than there are children with Autism but nobody has heard of the former. This equates to 2 to 3 children in every class with a condition that is poorly understood and under-identified. I’m not quite sure what us Speech and Language Therapists have been doing wrong but I’m pleased that there is now a big push to raise the public’s awareness.

As part of the campaign a video has been made. You can watch it here: https://www.youtube.com/user/RALLIcampaign

You can also tweet about it using the hashtags: #DLD123 #DevLangDis

There are 3 key messages that are the focus of the awareness raising campaign:

  1. DLD means that a child (or adult) has difficulties with understanding and/or using language
  2. DLD is a HIDDEN condition but is surprisingly common.
  3. Support can make a huge difference to children with DLD

In order to bring these messages to life, I would like to share some of my son (Little Bear)’s journey.

  1. In simple terms, Little Bear experiences difficulties with both understanding and using language. This visual produced by Susan Ebbels is helpful in giving more detail:

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Little Bear experiences (or has experienced) difficulties with every area in the peach circle including Phonology. If you want to know more about his journey, the specific types of difficulty he has overcome and some of the things we have done to help him, you can read about it in these previous posts:  Living with Speech and Language Difficulties , Speech & Language & School, A bit of a rant, SaLT, EP & an Assembly, Communication Difficulties: Update

As part of the awareness campaign, the diagnostic criteria for DLD have been clarified. Crucially, for us, early neglect is not an exclusionary factor. This fits with my growing hunch that Little Bear was always going to have DLD but that his early adverse life experiences have served to deepen his difficulties.

2. DLD is a HIDDEN difficulty but it does show itself if you know what to look for. It is crucial that teachers in particular are able to see beyond ‘challenging behaviours’. A world in which you cannot understand much of what is happening around you and you are unable to verbalise your thoughts, fears and ideas is scary and frustrating. It is no wonder that many children with DLD express themselves through their behaviour. In general people need to get better at looking beyond behaviour – what are the child’s reasons for behaving as they are? In our case (and many other cases up and down the country) trauma could be at play too.

Children with DLD may not put up their hand in class, they might struggle to complete their work and their learning may not be progressing as you would expect. They may struggle in particular with literacy.

If you speak to somebody who is taking a bit longer to answer you or who doesn’t seem to be following your conversation or who is confusing to listen to, they might have DLD. Give them more time. Don’t worry about having a big pause – they might need that time to think. Try to keep your language clear. It doesn’t matter about flowery language – cut to the chase. Say what you mean. Your conversation will get much easier.

Children with DLD are not un-intelligent. Little Bear has the potential to learn many things but the way they are explained to him is crucial. He can struggle with too much or very complex language but if you can explain a complex concept to him in an accessible way, he will understand it. We have recently had chats about hurricanes, electricity and endangered animals and he is a sponge for knowledge if it is presented in a DLD friendly way.

3. The best message from our story is that support really does make a massive difference. A diagnosis of DLD is not hopeless. Despite having been neglected for the first 3 years of his life and having very poor language stimulation during that time, Little Bear’s language skills have gone from strength to strength with the right input. It is never too late to put support in place.

Of course Little Bear’s difficulties are ongoing but he is progressing all the time. He has gone from using 3 to 4 word sentences to full, compound, complex sentences.

His vocabulary has grown from a miniscule hand full of words to a wide and fairly ordered plethora. Although words do still have difficulty getting stored correctly and sometimes jumble together (Numicorn for unicorn (Numicon + Unicorn) or chicken yoghurts (nuggets + yoghurt)), Little Bear is getting better all the time at being able to analyse the parts of words and can mostly imitate them correctly now.

Little Bear’s grammar is not bad, though the order can be jumbled. We usually have one target on the go at a time. At the moment we are working on ‘bigger than’ instead of ‘bigger of’ which Little Bear is grasping and using appropriately.

Little Bear’s speech has gone from being completely unintelligible to just a few vowel and more common errors such as ‘v’ for ‘th’.

His awareness of the sound patterns in words has gone from non-existent to being able to say the first sound to being able to blend sounds together to being able to read.

This level of progress in a two year period is fairly transformational. He doesn’t sound like the same child any more.

The progress has meant that making friends is much easier and things like being able to sing are becoming a possibility (it is still a challenge but Little Bear tries very hard and repetition of songs is really helping him). Little Bear has learned lines and spoken in a class assembly. He can speak on the phone and family members can understand him and have a proper chat.

 

Little Bear’s DLD will be ongoing. It will probably affect him into adulthood but this doesn’t keep me awake at night because I have seen the progress he can make with support. I have every intention of keeping the support going and although DLD will always be a part of him, it needn’t stop him. With the right support, he will be able to reach his full potential.

 

 

Please share, use the hashtags and watch the video. We need to put DLD on the map. Perhaps you know someone who experiences it?

Developmental Language Disorder