Mislaying The Positives

I think everyone knows that the last few weeks have been a little trying. Between school residentials and transition, there has been plenty to get my knickers in a twist about (if you somehow missed it, see Hysterical , The Big Trip and Is Dysregulation Rocket Science? ). This isn’t unusual, I’m frequently banging on about some issue or other, more often than not relating to LB’s education. I’m aware though, that in getting caught up dealing with the myriad issues, it can be all too easy to skip over the positives. It means that things, that when you stop to think about them are actually amazing, can pass you by with barely an acknowledgement. I don’t want to skip over these things – these achievements of LB’s – because they are massive within the context of his history and should be given the credence they deserve. I’m going to share one thing, in particular, today. First, I need to tell you some facts.

I don’t like bragging. That’s a fact. I can’t bear it when people go to parents evening then write #giftedandtalented on Twitter or Facebook. Or when someone asks you if you’re concerned about your child and you say yes, and then they say how they aren’t at all worried about theirs because they are exceeding expectations in every area. I don’t like it when people brag about how expensive their house is or how much they earn or how clever they are or any of the others ways that people try to seem better than other people. Just, no.

Here’s another fact. When LB started pre-school, his development was measured to be two years behind the typical expectations for his age – so he was functioning round about the level of a two year old, when he was four. That’s a very tricky educational starting point. There were many barriers between LB and formal learning – behavioural, emotional, linguistic.

When LB started reception class, he couldn’t count. I’m not exaggerating – he literally couldn’t count to three in the correct order. This was not through a lack of trying on anyone’s part – it was mainly due to his Developmental Language Disorder (DLD See Developmental Language Disorder or DLD & Education ), as well as his tricky start. It did mean that numeracy was going to be extremely difficult. It is impossible to do sums if you don’t understand the currency you’re dealing with. It literally must have been like adding apples and pears for him.

By the end of year 1, though LB had made incredible progress in all areas, he had never quite managed to hit an expected level in any subject. It didn’t matter. We were extremely proud of him because of all the things he had achieved and really, from a starting point of 2 years behind, how could he?

Year 2 felt like a big jump. Year 2 had SATS. SATS were going to be hard for someone working below the expectations of the curriculum; someone who had only been able to count for 18 months or so. Fact. We didn’t even know if we’d let him sit the SATS – if they were going to feel too big an obstacle.

Somehow, despite all those facts, at the end of Year 2, LB managed not only to sit his SATS but to pass his Maths SATS. Not only that, but he smashed it, gaining close to a ‘greater depth’ score. He has also been deemed to be working at the overall expectations of the curriculum in numeracy, so in his report, he got his first green light. In fact, he got one for science too.

Why are you telling us this, if you don’t like bragging? I hear you whisper.

I’ll tell you why.

The ACE’s index (Adverse Childhood Experiences index) came about as a way of measuring the impact in later life of various different adversities that could befall a child. This is important because it is only fairly recently that society has begun to acknowledge that things that happen during childhood can continue to impact a person throughout their life. It is important we understand that childhood abuse, neglect or the disappearance of a parent through divorce, death, imprisonment or moving into the Care system doesn’t stop impacting a person once the event is over. It is really important these things are widely understood. The old adage that ‘the child is safe now so the past can be forgotten’ really does need eradicating and something like the ACE’s movement helps with this.

The ACE index also tells us that the more ACEs a person has experienced, the greater their risk of mental and physical health difficulties, substance abuse and unemployment. In short, the worse your start in life, the higher the likelihood of your life outcomes also being poor. A double-whammy body-blow.

ACES another one

 

It is beginning to be recognised that though this information is well-intentioned and to some extent needed, by encouraging people to count numbers of ACEs, you are really misunderstanding the way trauma works. It’s feasible that a person could score just 1 on the index, for an event that may only have occurred once, on one specific day. The index would suggest that this event would only have a minor impact on the person. However, from what we know of trauma, this is isn’t accurate. Depending on the person and their own reactions, that single event could have anything from a minimal to a profound lifelong impact upon the person. Similarly, because you have a large number of ACE’s, it doesn’t necessarily mean you will end up homeless, addicted to alcohol and drugs and suffering several health complaints, and I think there is a danger in suggesting you would.

ACES

 

For a young person, growing up with the knowledge they have a high ACE score could well make them feel hopeless about their future, and is that really what we want for our most vulnerable children? Surely the message should be that, yes, rubbish things that happen in childhood can impact upon a person and as a society we acknowledge it. We should also be offering all the extras a child could need – therapy, education, social/behavioural/emotional support – to help them in overcoming the impacts of those ACES. We should be acknowledging that children with any ACE score need more from us – more care, more love, more support. We should be flagging them up as at risk of the future harm the ACE index suggests whilst providing them with what they need to negate that risk.

I think there’s a danger in suggesting that something that happens early on will categorically lead to x or y later. These things are not set in stone. With the correct support, children who’ve had adverse starts in life can and do overcome the barriers their early lives attempted to block them with. I’m not saying it’s easy – it will undoubtedly be harder for them than for children without ACEs – but shouldn’t we try? Shouldn’t we aspire for the best we can for all children?

So, when a child comes from two years behind expectations, having experienced neglect and the severing of links with their biological family, and several moves, and despite all that catches up with expectations for children who have dealt with none of that, shouldn’t we be shouting from the roof tops? I think so.

Often, it is the most privileged who brag the most. It is hard to be impressed by the gains of those who already had a head start, but when the one who was lagging behind, who joined the race a long while after the others and kept on running despite being so far back, manages to catch up, that’s truly brag-worthy.

This is not all about catching-up though. Even if LB hadn’t have caught up, but had kept running, that would be a significant achievement too. He’s still running when it comes to literacy and he may always be, as may many of his other adoptee peers who have educational mountains to overcome, and I think it’s important we acknowledge that every next reading level, every percentile, every point on every scale, is harder won for our children with ACEs. But they’re doing it. They’re out there, surpassing expectations all the time. And I don’t want that to be lost in schools that don’t understand their behaviour or in parents having to fight or getting dragged down by the multitudinous battles they’re facing. We mustn’t mislay the positives. These positives are huge and indicative of something bigger even than ACEs. They’re about human fortitude and our ability to overcome. And a beacon of hope for what can be achieved, when we properly support our most vulnerable.

 

 

 

 

 

Mislaying The Positives

DLD & Education

Today there has been a web chat run by @DLDandMe all about the impact having a language disorder has on a child’s education. It is part of their wider work to raise awareness of Developmental Language Disorder  (DLD) and to spread the word to a broader audience, about what DLD is, how to recognise it etc. I joined in a little, although late, but I thought it might be useful to share more detail about this topic, from our own personal experience.

As most readers already know, I am both a speech and language therapist and Mum to our seven year old son – LB – who has DLD. There is a complication to our story, which is that LB experienced early neglect and didn’t come into our lives until he was three and half. It is pretty impossible to pick apart the different impacts of neglect and DLD, with both having made their mark. However, it was clear from fairly early on that the communication difficulties LB experienced were more significant than delay alone and where progress was quite quick in some areas, speech and language has always proved more challenging for him. As much as possible in this post, I’m going to focus on the specific ways DLD has affected LB’s educational progress, notwithstanding the separate effects trauma has had.

LB’s DLD impacted on all areas of his communication development when we first met him – including his ability to understand language (comprehension), his auditory memory, his ability to use words and make sentences (expressive language), his ability to listen and pay attention, his ability to speak clearly and his social communication. When I talk about his presentation back then, in workshops and the like, I can see that it shocks people. And it was shocking, because LB’s language system just couldn’t do what he needed it to – not one part of the complicated whole functioned as it should have. He was very much trapped inside of himself and he wasn’t left with many options other than to express himself through his behaviour.

In the early stages of his pre-school education, this impacted him in a myriad different ways. He was certainly delayed in learning concept words such as his colours, size words, same/different etc. which meant he just couldn’t follow much of the teaching or express answers to what nursery staff would likely consider easy or every day questions. That said, with specific teaching of one concept at a time and plenty of reinforcement in everyday activities and play, LB was able to close the gap pretty quickly. It isn’t that LB can’t learn, because he has developed phenomenally quickly, it’s just that he couldn’t pick these concepts up from the ether, as children with typical language skills would. He required specific teaching, repetition and showing, to get them to stick.

Obviously, struggling with comprehension made it even harder for LB to learn new things. There must have been much of what went on in Nursery that he couldn’t follow. This no doubt exacerbated his difficulties with listening and attention, because it is extremely hard work for anybody to focus on language they don’t comprehend. Imagine having to listen to French or Urdu or Finnish or any other language you aren’t familiar with, for large swathes of each day. It would be exhausting and it wouldn’t take long until you stopped listening. Therefore, in some ways, LB’s DLD exacerbated his DLD. He certainly coped better on a 1:1 and thankfully we were able to provide him with this because I was on adoption leave and he just went to pre-school for a few sessions (and now he has TA support). Keeping distraction levels down and matching our language to the level LB could cope with, was imperative. It meant we could keep language accessible for him most of the time and choose which concepts or structures we wanted to stretch him with. I guess this is where my professional background came in – I suspect creating these ideal learning conditions would be much more difficult for a child whose parents are new to the idea of DLD and whose pre-school setting don’t get it.

Certainly as LB’s comprehension developed, so too did his ability to learn. I know it sounds a bit ridiculous but he did appear to be growing cleverer. I maintain that had he have had a cognitive assessment at the beginning, and one a couple of years later, he would have climbed the percentiles. This is because learning and education is generally acquired through the currency of language. As he acquired more words, he knew what more things were. He was able to express how things work. He was able to enquire and find more information out. The more language you have, the better you become at gaining it. Initially, we just couldn’t have talked about complex ideas such as electricity or natural disasters or endangered animals or health conditions. LB didn’t have the vocabulary to access a discussion or explanation about such things so he essentially wasn’t able to learn about them. It was only when he had gained sufficient depth and breadth of vocabulary and could listen to and follow longer structures, that he was able to develop his knowledge of the world around him. And when this did happen, it was amazing to witness the world opening up to him.

Vocabulary acquisition was a huge ongoing challenge for LB (and me) for a long time. Initially, even though we used lots and lots of modelling strategies, he didn’t seem to be growing a larger vocabulary. Again, like with other aspects of his language system, the more he heard a word used and the more times he managed to store a new one, the better his language processing system got. He has certainly got quicker at acquiring new words, even if this continues to be hard for him. Evidently LB’s language processing system (the bit of our brains that hears words, de-codes them, decides what sounds are in them, and their meaning, and stores them in an organised way, ready to be spoken) was not well-developed. It was laborious for him to use it, meaning that getting his vocabulary as big as he needed it to be must have been an exhausting task for him.

Where LB would once have needed to hear a word used around him for several months, with a high level of repetition, before being able to store and use it, he can now store a new word almost immediately. This has had a huge impact on his ability to be able to keep up with the curriculum. Each new topic brings a cornucopia of new words, which children are expected to immediately absorb in order to follow teaching. If you can’t understand the new words, it’s extremely difficult to follow the new lessons.

Although speedier, LB’s processing system remains inaccurate – he struggles to de-code words so that, without help, he might store ‘Corvette’ as “courgette” or ‘submarine’ as “subramine”. He is aware of this so often requests help – just having someone break a word down into bite-size syllables is a huge help to him and allows him to store a new word correctly. At school he has word webs for new words and is building up a personalised dictionary with his TA.

Despite all the hurdles, LB’s comprehension skills have caught up. He seems able to access the vast majority of teaching in his year 2 classroom without too much difficulty. He does cope better with multi-sensory teaching and visual supports (such as narrative grids, Mind Maps etc.), not least because they help to hold his attention. When LB is tired, his skills in this area do diminish a little and he might need a bit more repetition but overall I think his progress underlines what the right speech and language therapy input can achieve for children with DLD.

LB’s difficulties with auditory memory have impacted in several ways – most notably on his ability to blend sounds together and to learn listed information. Literacy acquisition was always going to be a challenge for LB, as his speech continued to be unintelligible well into year 1, with vowel distortions, and his sound awareness skills (identifying the first sound in words, rhyme, syllables etc) were poor. Even the pre-reading task of describing what’s happening in a picture was ridiculously difficult, because LB didn’t have the sentence structures or vocabulary he needed in his expressive language – something else we taught specifically.

We worked hard on sound awareness in a stepwise manner – identifying the first sound of short words then longer words, then the last sound of short words etc., alongside attending speech and language therapy. Again, I feel that good phonological awareness skills are something LB wouldn’t have been able to acquire organically, but he was very much capable of achieving on a 1:1 basis with a personalised approach.

We stumbled at the point of blending sounds together – a critical final step before literacy could be gained. The difficulty it turned out, after a bit of ‘diagnostic therapy’ (again, thank goodness for my career) was the blasted auditory memory which was struggling to hold three sounds, let alone stick them together. Once more, practise paid off and eventually LB could blend. Which, having already learned his letter shapes – pretty easily, it was a visual task – meant he could read. Progress has been steady since that point, with him progressing through the reading levels as you’d expect. In my opinion, a good phonics approach is essential for a child with DLD. It was a challenge to establish that strong foundation but once it was in place, it served LB well. He is not yet meeting the expectations of the curriculum but his reading is good; he understands text and he can apply his phonic skills to decipher most words. Crucially, he loves books and listening to stories. Keeping things as fun and engaging as possible is another essential tool in encouraging a child with DLD.

However, LB is not yet ready to apply his phonic skills to writing, finding this laborious. The addition of SPAG requirements such as including a noun phrase, or adverbial, pretty much renders writing the very worst aspect of school life for LB and, in my humble opinion, totally takes the fun and imagination out of it for all children.

It is hard to get LB’s teachers to understand just how many demands writing places on the language system of child with DLD. My hunch is that when his reading skills are better still and he’s had more specific phonics teaching, his ability to spell will improve. I suspect that expressing himself on paper, with appropriate grammar, will always have its challenges.

The other area auditory memory difficulties have impacted is LB’s ability to learn listed or sequential information such as the days of the weeks, months and, perhaps most crucially, how to count. Learning the numbers to ten proved extraordinarily challenging for LB so that when he started school, aged 4 and half, he couldn’t count to three in the correct order. The knock on effect of this was that Maths was pretty much impossible. How can you do sums when you haven’t the basic language for it? When “4” or “732” are just as meaningless and unquantifiable? This certainly held LB back and for the first year, perhaps two, of his education, his literacy skills appeared better than his numeracy ones, which lagged significantly behind. However, all the repetition and visual representation eventually paid off and LB learned to count to 10. And then 20. Very soon after that, probably because he could use his logic and ability to see patterns, he could get to 100. Once he had the language, Maths wasn’t so hard at all. In fact, it looks as though LB will meet the expected levels of the National Curriculum for the first time this year, which is no mean feat, given his starting point. Now that he has the language, even the reasoning SATS paper is accessible to him, despite the problems being presented in word form.

Having DLD has made every aspect of LB’s education more challenging for him. However, with the right support, LB has proved over and over again, what children with DLD can achieve and how crucial getting that support in place is. Language underlies all learning and we ignore that at the peril of children with DLD.

 

 

DLD & Education

The Virtual World & Me

Well, things have turned a little unpleasant of late, in the Twittersphere, let’s just say that. Despite my better judgement, the unpleasantness has temporarily silenced me and called into question the wisdom of blogging at all. I say ‘against my better judgement’ because haters gonna hate, it comes with the territory, and I don’t want to be someone that easily cowed. However, I am human and fallible and, it turns out, impacted by unpleasantness whether I want to be or not. I’m just as vulnerable to over-sensitivity as anybody else. In fact, within the current context of multiple writing rejections, perhaps even more so than usual.

This has all led to feelings of being conflicted about blogging and my use of social media. Should I be doing those things? Why? Why not? Do these things have a purpose or are they merely a reflection of narcissism?

Sometimes it is good to stop and re-think and I’m grateful for the reminder to do so.

My pause has taught me several things.

Firstly, Twitter (my main social media platform), plays a more important role in my life than I would have thought feasible or healthy. When I back away from it, I’m left with a hole in my support network. I want to explore this a bit because I am fortunate enough to have a very supportive network of living, breathing, touchable humans around me, so why do I need virtual ones as well? This thought has led to me analysing my network, who it is made up of and what role they play in supporting me. I’ve realised that I have a range of friends/ family and they support me in different ways.

I have the friend who is always there at drop off in the morning, has observed my difficulties at this very specific moment in time (as well as at other times) and empathises with the challenges. I have the friend working with many children whose backgrounds involve trauma. She is extremely knowledgeable and truly trauma informed and we have many an in-depth discussion about Little Bear, but also about work and families and cake. I have the friend I’ve known since high school, who reads my stuff and champions my writing and fills my brain with filth. I have the friends who are always on the end of Whatsapp no matter what we want to discuss. They are the completely un-shockable ones who are as happy talking parenting as they are strange gynaecological issues or niche celebrity crushes. There is the friend who is my longest friend from way back when who I don’t see often and who lives an entirely different lifestyle to my own but with whom I have long, deep and meaningfuls on the rare but brilliant occasions we get to see each other. There is the friend I have from University who is also on the end of Whatsapp or Twitter or a text and knows exactly what I need to hear when I’m fed up or self-doubting, but who is equally happy having a detailed conversation about The Voice or football or shopping. I name but a few (please don’t feel unloved if I haven’t mentioned you).

There are, of course, also my parents and Gary (my mum in law but forever more known as Gary because Little Bear couldn’t say granny) and my brother, who know and take a keen interest, in all the ins and outs of our day to day lives/ challenges/ high points and low points.

All of these people play vital roles in my life and also our lives. Not one of them is an adoptive parent or adoptee and I don’t need them to be. They still support us in multitudinous ways.

I should also point out that none of these relationships are one-sided. I hope that I am also there for all of them, in all the different ways they need me to be. Some of these ways are related to parenting, some of them are not.

I know that I’m very lucky to have this varied band of supporters in my corner. However, I still find myself reaching out to a band of strangers on social media. The main thing I have in common with virtual friends is that the majority of us are adoptive parents and there is undeniably something to be said for talking with people who just get it; no explanations. They just get it because they are living very similar daily experiences to us. It’s natural that a group of people with so much in common will gravitate towards one another – it isn’t exclusive or cliquey, it’s about commonality – a commonality that people often can’t find in their ‘real lives’. It’s a commonality I also feel with other parents of children with additional needs, adopted or not. Similarly, I have many online friends who are speech and language therapists because I too, am a speech and language therapist. I also have online friends who are writers, because I too am trying to make my way in that career.

Though I talk to different groups about different things, when I blog, it’s for anybody who is interested. Consequently, there are now speech therapists who are much more trauma informed and adopters who have heard of Developmental Language Disorder . That has to be a good thing. Social media has allowed a cross-pollination of knowledge and experience we couldn’t have achieved otherwise.

The links I have made with all sorts of different people on social media have been my richest source of CPD for a long time, if ever. I know more about stammering, attachment, adoptee voice, inequality of PAS, the impact of austerity, homelessness, issues around leaving care, what makes a good flash fiction, how to query literary agents, which Netflix series everyone is watching and about a gazillion other things, than I ever would have without Twitter. At its best, Twitter is a rich tapestry of information and knowledge.

Up until recently, groups of like-minded individuals have found safe corners of the tapestry in which to meet, chat, and in the case of the adoption community, hold one another if necessary. I know that sounds weird and like a virtual hug from a virtual stranger wouldn’t do anything for anybody, but I know that it has been a lifeline for some. Earlier this week, due to the unpleasantness, I was feeling fed up and more than a little over Twitter and took the uncomfortable step of admitting as much. Many of those virtual strangers reached out to me, with kind words, reassurance and encouragement. They’ve got me, in the way my physical support network also have. Those people are not holograms inside a computer cable. They are real people, with real friend networks, real hobbies, real challenges and real care for others. And as weird as people might think it is, I need them. We need each other.

There are those who will argue that you can’t be friends with people you’ve never met. You can and I am. And just as I hope to be there for my physical support network, I also try to be there for my virtual one. Isn’t that what friendship is: still being there when the shit’s getting thrown? Brushing each other off, making each other laugh, answering those pleas from the darkness?

There will undoubtedly be those who say that adopters only care about other adopters. I wish I didn’t have to say this, but I will: I love my disparate Twitter friends, of whom there are adoptees, birth parents, adopters, foster carers, grandparents caring for grandchildren, social workers, teachers, psychologists, authors, accountants, musicians… (insert any role you can think of), of all genders, nationalities, colours, creeds, sexual persuasions. I will happily engage with anybody who behaves respectfully towards myself and others. I will offer a listening ear; a virtual hug.

Sometimes, the people who need those things most are unfortunately unable to reach out for them in a respectful way. That saddens me and I wish them well down the virtual waves and hope they find what they need somewhere out there.

The messages of loveliness restored my faith in what I’m doing in the virtual world. I’m not wandering around, lost. I’m learning, connecting, sharing. I’m becoming informed and informing others. I’m hanging out with my friends.

As for the blogging, there will be people who like it and want to read it. There will be those who learn from it, feel challenged by it, feel reassured or heard by it. There will be those who are disinterested or opposed to it. I would suggest they don’t read it. There will be those who wouldn’t miss it if it was gone and those who would.

I know I need it and that might be a selfish thing, but where some people talk or cry or box or run, I write. That’s what I do. It helps me sort out my head, organise my thoughts, get objectivity. It helps me be a better parent.

There will be those who say I shouldn’t write about my son, but, ultimately, that is between me and him. He knows I write, and as much as he is able to understand consenting to it, he does. Where I can include his voice, I do. I also write about my other son and my husband. Today I wrote all about my friends. I would argue the consent issues are universal, across all people, and I would never disparage those whom I love.

I use what small voice I have to spread the word about DLD, the impact of trauma, cuts to speech and language therapy services, how to improve parent relationships with schools and little talked about issues like PMS or continence. I try to use my (teeny) platform for something constructive.

I heard Mary Portas speak this week too. She talked about how we never hear people being honest about their vulnerabilities, especially with regards parenting, and how this impacts upon the cultures we create – both inside and outside of the business world. She’s right. We often think everyone else has it all sewn up because being honest about finding aspects of parenting difficult is hard and taboo. If I can make one parent, adoptive or otherwise, feel able to ask for help, take advice or just feel heard, then the blogging is worth it. Does that involve putting myself and my own vulnerabilities out there? Yes. A writer’s greater source is themselves and their own life and experience. Is that hard? Yes, sometimes it is.

As I’m learning with most things in life, nothing is wholly good or wholly bad. Blogging is the same. It has huge plus points but does it also have risks? Yes, of course it does. I’m more than aware of them. But, as with everything, you weigh it all up and you do what you see fit. Of course I exercise caution, of course I double and triple check my words for appropriateness and future readability, of course I keep my children at the centre of everything I do. Then, I make sure we are wrapped in the arms of our support network – physical and virtual – and try to remember that everything else is extraneous.

 

 

 

The Virtual World & Me

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

image-1.jpg

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.

Speak Up For Communication

Three Years A-Bloggin’

I seem to start every one of these types of post by saying I can’t believe how fast time has gone ( see My 1 Year Blogversary  and Two Years of Adoption Blogging ). It’s true: the passage of time is swift (and I can rarely keep up) yet here we are, 3 years and 157 blog posts later. What sorcery is this?

As I’m sure you’ve come to expect, I’m prone to a moment of reflection at these junctures. What exactly has possessed me to write post after post, week in, week out for three whole years? What do I get from it? What does anybody get from it? What is the meaning of it all?

At points in 2018 I struggled to answer these questions. 2017 had ended on a high blog-wise, with a pleasing growth in reader figures and I set myself some targets for that to continue. However, as winter turned to spring, my figures took a nose dive. I tried not to be bothered but I think being bothered by figures is an affliction most bloggers suffer from. Some weeks I struggled to think of good content or there were times I thought I had written something scintillating but my audience appeared less than scintillated. I got a bit fed up with it all. What was the point, anyway?

At the same time, I had re-written my book, Finding Ezra, and had sent it out on submission again (see Am Writing ). Being new to how the publishing industry worked, I found the prolonged periods of time everything seemed to take difficult and also the inevitable rejection. With each drop in blogging figures and each ‘no thank you’ or complete lack of response to my queries, I became more dejected. What was I actually doing with my life? I felt like I was working really hard going nowhere. I asked myself many hard questions about whether you can call yourself a writer if you aren’t published and if you never achieve that accolade, is all the time (and there was a lot) you spend writing a total waste of existence?

I was a bit down in the dumps about my wannabe new career and there were several occasions when I thought seriously about folding the blog. See Stay at Home Mum to see what I mean.

However, my stars must have come into alignment in July because a couple of things happened which gave me a lot of encouragement. The first thing was that someone had read my blog and wanted to include part of it in their book. That book was The Adopter’s Handbook on Education by Eileen Fursland which you can purchase here: Coram Baaf bookshop

For the first time, some of my writing (5 pages to be exact. See, the numbers matter) appeared in print. The book might not have had my name on the cover but this was awesome and certainly the next best thing.

Later in the month, I found out I had been nominated for Adoption Blog of the Year as part of The First4 Adoption Awards.

These two things gave me back the spring in my step: perhaps I was alright at this writing malarkey after all? I don’t think it’s any coincidence that in August I felt brave enough to make my first tentative steps into the world of fiction writing and began entering writing competitions. I realised that the only way to survive having your book in submission is to distract yourself with writing other things and flash and short stories were the perfect way to dabble and practise. I also thought, in for a penny, in for a pound, and started my first novel. I don’t want to say too much about it yet but let’s say that I have drawn on my knowledge and experience of developmental trauma as a central tenet of the story.

Without blogging, I wouldn’t have done any of these things. More specifically, without the readers of my blog and those who took the time for vote for me, I wouldn’t have done any of these things. You are a blooming fabulous bunch and I’m extremely grateful to each and every person who has read, shared or commented on any of my posts. As you can tell, this has all added up to a significant impact on me, on a personal level. It gave me the impetus to press on and helped me realise that success doesn’t happen overnight – it comes bit by bit: a few pages of print here, a longlisting there, an award here, a highly commended piece of writing there. Onward and upward I reckon.

My family and friends are all loyal readers of the blog and I think that has helped us all too. I don’t tend to take people aside and lecture them about DLD or explain the intricacies of why adopted children might struggle with eating or inform them about interoception over dinner, because, well, weird. However, if they choose to read my essays on such things, which, bless them, they do, they will absorb a lot more knowledge and become much more informed about Little Bear and his ways and the wider context of adoption/ SEND than they probably would have otherwise. I certainly feel lucky that the people in our support network are as knowledgeable and understanding as they are. I’m not sure we could have achieved quite the same level of awareness without the blog, mainly because I would be too lazy to explain all that stuff to all those people.

My most favourite thing about blogging though, is when I get a message from somebody saying “you’ve written my life” or “so much of this resonated with me”. When I first started out blogging I was a little bit tentative about how much I could reasonably share. I think most people would be cautious about sharing their deepest, most vulnerable feelings and experiences on the World Wide Web. However, every time I published a post I felt unsure about – because it felt too honest or too vulnerable – I received lovely feedback. I received messages from people saying they felt that way too and knowing someone else did made them quite emotional. I do seem to have caused a surprising number of tears (sorry about that). As this has gone on, I’ve realised we have far more in common than sets us apart. So far, no one has ever said I’m weird or parenting badly or don’t know my arse from my elbow, as I’ve often feared they would. I’ve realised that we all have similar anxieties and many of our children have similar behaviours and we worry about them similarly. Knowing that, has spurred me on to be more honest. Thank you, as always, for the lack of trolling in my readership and the times when one of you has taken the time to tweet me or comment on the blog.

There are a couple of downsides to blogging. My main fear is getting found out! Everybody who knows me well knows what I’m up to and many people who don’t know me at all, know who I am. However, the main people I don’t want finding out are school. My relationship with them is complex. I vacillate between loving them, being enormously grateful for the support they give us and wanting to hug them inappropriately; and feeling they are the bane of my life and will never, ever, understand. I think that navigating the education system for Little Bear is one of the biggest ongoing stressors in my life and having a place to air those stresses is essential. That place is my blog and I have written some pretty antsy pieces – Dear TeacherConversationsAdoptive Parent: Behaviour DetectiveSchool-Parent Partnership . As I do love school most of the time, I really wouldn’t want them to read these pieces. I do occasionally have nightmares about getting called to see the Head Teacher. Whilst I would never write anything defamatory or abusive, I still think they might not like it and this is the main reason I blog anonymously.

The other negative, as I mentioned before, is getting hung up about reader figures. I am trying to be less bothered but it’s a work in progress, along with taking rejection of my writing in my stride.

So, what next for the blog? I’m not someone who plans their content in advance so I’ll keep writing about how I feel at the time of writing. I think I’ve got a bit more vocal this year, in terms of using the small platform I have (and it really is teeny in the grand scheme of things) to raise awareness or rattle a few doors. I loved getting involved with spreading the word about Bercow10 (see Ensuring Children’s Speech and Language Needs Are Met: A Call to Action ) & DLD Awareness Day 2018 and certainly plan to be part of that again. Surprisingly, my most read blog of the year, in fact, ever, was the review I wrote of Nativity Rocks ( Why Nativity Rocks is Not For Care-Experienced Children ). It was another post I was unsure about writing but I’m glad I did because the content of the film was extremely inappropriate and it reached enough people that hopefully it prevented a few families seeing it and being upset by it. I did contact the writer/director directly and I did explain to her why it was upsetting and why I had blogged about it. I like to think it changed her perspective a little but equally, she could have been paying me lip service to get me to be quiet!

I’m always open to suggestions or guest posts so do get in touch if there is something you’d particularly like to read about. In the meantime, I shall continue my quest for publication with both Finding Ezra and my novel which I hope to finish in the next few months. That quest now feels more achievable and is being approached with more confidence, thanks to the support I’ve received from you lovely blog readers. Here’s to another year of weekly posts and no doubt a few surprises along the way.

 

Three Years A-Bloggin’

Alternative Gift Guide

In a temporary departure from my usual content, I’ve decided to put together an alternative Christmas gift guide this week. I appreciate my usual audience probably don’t visit an adoption blog to go shopping but bear with me, it’s sort of relevant. This isn’t one of those posts somebody has paid me to write – instead it is a collection of links to companies/people/ items that I have discovered over the last couple of years that I think are doing something good (I don’t get anything out it other than the warm glow of being able to spread the word). Amidst the hyper-commercialism of Christmas, it’s nice to be able to give a gift which gives to someone else or to support a small business. Here are my alternative suggestions:

Masato’s Beanies

If you are after a warm, hand-knitted beanie for yourself or a friend, this is the place to go. We bought one each last year. They’re great quality and kept us snug as bugs in rugs even when it was minus 25 degrees in Lapland. The best part of the deal is that for every hat you buy, one goes to a person living on the streets. Imagine how chilly that would be.

You can also buy socks and a pack goes to someone homeless.

I know some people worry about transparency but the website lists which other companies they work with to get the hats to the people who need them. A very genuine charity, doing it’s bit.

Here’s the link: www.masato.co.uk

masato beanies

Madlug

Did you know that for many children who move about the Care system, their belongings are moved in black bin bags? Madlug, like many of us, don’t think that’s appropriate and that young people should have the dignity of proper luggage at such a vulnerable time.

This is another ‘buy one, give one’ scheme – you buy a rucksack (lots of funky colour choices) and a rucksack goes to a young person in Care. You can also get gym bags or carry-on luggage. What’s not to like?

Here’s the link: www.madlug.com

madlug

Centrepoint

Centrepoint is a charity for homeless young people. Unfortunately Care leavers are amongst the most vulnerable to becoming homeless – with as many as 14% spending time on the streets. On the Centrepoint website you can choose to give a gift to a vulnerable young person at Christmas. You can give anything from a hot meal to a jumper to a box of useful utensils to a room for a night. There is a wide range of options, from a £10 donation to much, much more for those who feel able.

www.centrepoint.org.uk

centrepoint

Buddybox

I think the idea behind these subscription boxes is brilliant. They are dubbed ‘a hug in a box’ and are intended for people who are depressed or having a shit time for any reason. As a friend I tend to feel quite helpless if someone I know/ love is in a situation like that. I tend to want to do something but often, there is nothing practical you can do, especially if you are far away from that person. This is the solution to that uncomfortable feeling: send them a Buddybox.

You can send a one off box, as I have tended to, or you can buy someone a subscription for 6 months or a year. I heard about it because someone has bought a subscription for my friend whose baby had died. It was such a lovely thing to have done at such an awfully sad time.

You can even gift one to a stranger.

The contents are different every month and are always designed with self-care in mind. They describe the contents as ‘gender neutral and ageless’ so they are inclusive for all.

The perfect gift for a struggling adopter?

A lovely way to say ‘I’m thinking about you’ or ‘you are not alone’.

And if all else fails and you feel fed up, order one for yourself.

www.blurtitout.org/buddybox

buddybox

Steph’s Sock Monkey Store

This one is not so much a charitable cause as a small business trying to survive in tricky times. I found these sock monkeys totally by accident, fell in love with them and ordered one each for the boys last year. They’re great quality, bigger than you might think and make gorgeous presents.

There are currently some for sale whose profits are going to Marie Curie and ones where you can sponsor Yorkshire Air Ambulance. You can also buy gift vouchers so the recipient can choose their own monkey during the year.

www.stephssockmonkeystore.co.uk

IMG_1098 (1)

 

Books

I have read a couple of books recently which are relevant to my blog content – both to do with communication and both an excellent read. The first is this one by Cynthia Pelman:

IMG_0940

It is an account of a young boy, Joshy, who has DLD. It is told from the perspective of his speech therapist, his mum and him. It’s the only published account of DLD that I’m aware of at the moment.

 

The second book is written by an inspirational young man, Jonathan Bryan, who painstakingly wrote the whole thing by eye-pointing to an alphabet chart. This is a must-read for anybody interested in communication (especially alternative or augmentative communication) or those working in special education. It is also an inspirational read for anyone who is fascinated by people and overcoming adversity. Some proceeds from the sale of the book go to Teach Us Too – Jonathan’s charity which campaigns for schools to assume learning competence in children with profound disabilities and to give them the opportunities to become literate.

IMG_1078

You can follow Jonathan on Twitter @eyecantalk or read his blogs at www.eyecantalk.net

I’m not going to add links for buying the books because I don’t want to just assume Amazon is the only option. There are other booksellers out there!

Baby banks

Up until a couple of weeks ago I had absolutely no idea what a Baby Bank was or that they even existed. Think Food Bank but for baby essentials – nappies, formula, clothes, equipment such as prams and cots. It’s heart-breaking that in England in 2018 we have the need for such a thing but we do. Apparently it tends to be mothers fleeing violent relationships or those who are refugees and cannot access benefits who require the services. However, a recent documentary highlighted that women who work in low-income jobs can struggle to meet the costs of living and having a new baby can be the tipping factor into crisis. One family had been reliant on the Dad’s job as a painter and decorator. He was unfortunately in a car accident which meant he could no longer work as much/ do such heavy jobs and then a baby came along. Baby Banks are there for such situations.

I think many of us have a loft full of no longer needed baby or little people gear – perhaps this would be a good way of getting it to people who really need it. I know they don’t just want tiny things – coats for toddlers are particularly needed over winter. Some are also doing a Christmas campaign where you can help struggling families with Christmas gifts for their children.

I know that when I can finally face sorting out the clutter of my loft, this is where my pre-loved items will go.

Check out www.babybanknetwork.com   (they have centres in Bristol, Exeter, Aberdeenshire & Isle of Wight) or  www.baby-basics.org.uk who have many centres across the country. Both websites have maps which allow you to find similar services close to you.

baby bank

 

Thank you for persevering with my alternative post if you’ve read to the end! Do let me know if you know of any other organisations who are doing brilliant things – I particularly like the buy one, give one schemes so would love to hear about others if they exist.

Happy gifting!

Alternative Gift Guide

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.

IMG_0811 (1)

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