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:

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

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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Being an Expert Parent

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And the ground shalt quake.

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 19^th October) landing at the same time – two events I am always keen to talk about.

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 18^th. 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…

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.

 

 

 

Ensuring Children’s Speech and Language Needs Are Met: A Call to Action

As most of you know I am a speech and language therapist and my son, Little Bear, has Developmental Language Disorder   (DLD) so it is no surprise that meeting children’s communication needs is kind of a big deal for me. A recent report has come out reviewing speech and language therapy services for children and the findings are a little damning. It is called Bercow10 as it is written by John Bercow (of MP and having-a-bit-of- a-naughty-wife fame) in partnership with ICAN and the RCSLT and is a follow up to the original Bercow report which was written 10 years ago. It is a very important document and I want to share some salient points with you. As many of my readers are involved with adoption in some way, I am going to focus in particular on the bits of the report that are relevant for looked after children, children with mental health needs and children who become involved with youth offending. However, this is something that EVERYBODY needs to know about so please don’t look away, even if you don’t have any obvious connections to the content.

The report begins with an important message: “The most fundamental life skill for children is the ability to communicate” but it goes on to say that “as a nation, we have yet to grasp the significance of this”. This certainly seems to be the case as there are more than 1.4 million children in the UK with speech, language or communication needs (SLCN) yet it is not something we really hear talked about and most people have never heard of DLD despite it being one of the most common disorders of childhood. We hear a lot about the ‘obesity epidemic’ as it has a physical impact on children and a financial impact on the country. Bercow says that SLCN has a developmental impact on children as well as a social and economic impact and should similarly be considered an issue of public health. Being as SLCN impacts upon a child’s education, social, emotional and mental health and their future life chances it is a much bigger issue than it is given credence for.

A good starting point is to raise awareness of SLCN and what that means and what it looks like. If you want to know more about how Little Bear has been impacted by his language difficulties, see these previous blog posts: Living with Speech and Language Difficulties, Communication Difficulties: Update

Children from disadvantaged backgrounds, whether that is due to social disadvantage or maltreatment, are disproportionately affected by SLCN: in some areas as many as 50% of children have language disorder and Looked After Children have poorer language on school entry compared to those who are not Looked After. Children considered high-risk for harm, such as those on a Child Protection Order face a higher risk of SLCN as do children who live with domestic violence. Across the care system as a whole, 63% of children have SLCN, compared to 10% in the non-care experienced population. This makes our most vulnerable children even more vulnerable to poor life outcomes. Children with SLCN in early years are twice as likely to develop social, emotional and behavioural difficulties and are at greater risk of depression or anxiety. Children with poor vocabularies are twice as likely to be unemployed as adults compared to those with age-appropriate language skills.

The statistics are pretty scary. What is also very worrying and makes my heart break a little is that many children’s difficulties are missed or misdiagnosed. Studies have shown that 81% of children with social, emotional or behavioural difficulties, including those with conduct disorder or ADHD have significant undiagnosed SLCN. If we extrapolate that a little, the picture seems even worse. These children, who cannot learn in school (because the curriculum is not accessible to them and teaching is not differentiated for them), often go on to engage is risky behaviours – drug-taking, crime etc. and unfortunately many will go on to find themselves in the youth justice system. Another study shows that 60% of children in the youth justice service have low language skills, often lower than an average 11 year old. Imagine having to be interviewed and appear in court when you cannot access classroom language let alone legal jargon. Many of these young people are then expected to engage with various programmes to aid with their rehabilitation. Statistics suggest that 40% of young people cannot access the content of these ‘verbally mediated interventions’ due to their language difficulties.

If children do not get their needs identified at any early stage and do not receive the therapy they require, the consequences can be dire. This is what Bercow means when he talks about social and economic impact. I think this particularly upsets me because had life been a little different for Little Bear, he could all too easily have fallen victim to this pattern. His behaviour did come before him and had we not been able to see beyond that and not recognised his DLD (and developmental trauma), things could have been very different. Before Little Bear was adopted at the age of 3 and a half, although there was a vague indication in his paperwork that he might have some language delay, he had not been formally assessed by a speech and language therapist. I was shocked at the severity of his communication needs the first time I met him and his language was later assessed as being more than 2 years delayed. I’m not quite sure what other signs would have been needed for a referral to have been triggered but he was certainly at risk of falling through the cracks.

I think there are two key things here. Firstly, if a child is presenting with social, emotional or behavioural difficulties, they should have a speech and language assessment as a matter of course. Behaviour itself is a communication and people in general need to get much better at looking beyond it. The second thing is that other professionals need to become more knowledgeable about SLCN; teachers, health visitors, the police etc. all need to be aware of the ‘red flags’ and seek help to prevent life escalating away from vulnerable children.

The bleak picture I’m painting could possibly all come good if there were excellent speech and language therapy services available to meet need once children were referred. However Bercow is pretty damning about this too. There continues to be a post-code lottery when it comes to availability and quality of services: of all the 2500 respondents, only 15% felt services were available as necessary. More than 50% of people had waited longer than 6 months to receive the therapy they needed and 34% had waited more than a year. This is a statistic I can empathise with as we had to wait over 8 months for Little Bear to be seen for the first time and a year for therapy to begin (see A bit of a rant).

This isn’t good enough. I was lucky to have my professional knowledge to fall back on and could begin helping Little Bear from day one. However, most adopters or foster carers do not have that level of knowledge and couldn’t be expected to. A year is too long to wait for a child who has already been neglected and needs immediate support. Due to Little Bear’s behaviour, our adoption began at crisis point. Thankfully we were able to identify there was a communication element to his needs, as well as developmental trauma, and could begin to tackle it. As most adopters do not happen also to be speech therapists, they would be unlikely to be pre-armed with the knowledge and strategies required. The impact of not receiving support in a timely fashion could be catastrophic.

Our story does provide some good news though, thankfully. The thing is that when quality speech and language therapy is provided, it is extremely effective (see Speech Therapy Works). Despite starting pre-school at the level of a 16 month old across all areas of development, with communication being one of the most difficult areas for Little Bear, by the age of 6 his language levels had improved to within the expected range for his age. Admittedly he received a high level of input, both at home, in clinic and at school but that input was effective. Our story shows that as bleak as this situation seems to be, it doesn’t need to be hopeless. If change can be brought about, services can be improved and awareness can be raised, we can literally transform lives.

Bercow 10 doesn’t just highlight problems, it makes practical recommendations for change under the following headings: communication is crucial; a strategy for system change; an accessible and equitable service for all families; support that makes an impact; early identification and intervention are essential. You can read the full recommendations document here: Bercow10 recommendations

And if you are feeling very keen, you can read the whole report here (it’s really well written and a lot more accessible than I expected): Bercow10 whole report

What can you do to improve outcomes for children?

In order for change to happen, people need to know about the current situation. They need to know about Bercow 10 and its contents. @GillianRudd has begun a petition to bring discussion of Bercow10 to the government to ask them to ensure the implementation of the recommendations so that children’s communication needs can finally be met appropriately. 10,000 signatures are needed for the government to respond to the petition and 100,000 for it to be considered for debate in Parliament. You could help by signing the petition and asking one person you know to sign it too. Just follow this link: petition

Please share this post far and wide to get the message out there.

It is essential that schools, health visitors, psychologists, CAMHS services, doctors and the Police know about Bercow10. Could you share the link with your child’s school or other professional?

If you want to get even more involved than that, see the Calls to Action section of the website: Calls to Action 

Thank you very much in advance for signing petitions and sharing etc. Change has to happen.

 

 

*This post is based on my personal reading and interpretation of the Bercow10 report. If you want to know the sources of my statistics, please see the report.

Speech Therapy Works

As a Speech and Language Therapist it shouldn’t really be a revelation to me that speech and language therapy works. Obviously I have always believed in it otherwise I wouldn’t have stayed with it as a career for over 14 years. It’s just that trusting something works because you understand the theory behind it and actually experiencing something on a practical level, within your own home, with your child, is quite different.

Obviously I have experienced success in my professional life, but that has been within the confines of a large caseload and various time and resource pressures. In the latter part of my NHS career, as a more senior clinician, my main role was assessment and report-writing. I rarely did any therapy as we had a structure where skilled assistants carried out care plans under our supervision. It meant I didn’t get to know children as well as I’d have liked and I didn’t get to share in their small steps of progress week by week. I re-assessed and reviewed progress, seeing improved assessment scores but that isn’t the same as cultivating progression yourself.

Now that I’m an independent therapist I’m really enjoying being able to properly get to know the children I work with. I’m completely invested in their therapy and am just as pleased when they move forwards or overcome something as I am when Little Bear does. I do see (and feel) therapy working now.

However, what we have experienced at home has taken my belief in speech and language therapy to a whole other level.

I was recently running a communication workshop (for adopters, prospective adopters & professionals) when somebody asked me a question that made me realise the examples I talk about in it, from Little Bear’s communication profile, paint a bleak picture. The picture is totally accurate and reflective of his communication skills when we first met him, aged 3 and a half. The picture, detailing significant difficulties with attention and listening, comprehension, expressive language and speech sound disorder was bleak. At the time I was fairly overwhelmed by his level of need and the magnitude of the task ahead of us.

Here is a very brief summary of Little Bear’s presentation then:

Little Bear was not tuned into language at all and did not respond to verbal instruction, including his own name. His comprehension was better than it appeared but significantly delayed for his age. Little Bear had a very small vocabulary that didn’t meet his needs. He did not have words for common, everyday objects such as cow, train, television, food items etc. Little Bear couldn’t answer ‘what’s your name’, his only size word was ‘big’, he couldn’t name colours or count and he couldn’t put more than about 3 or 4 words together. The words that Little Bear did have were unintelligible. Little Bear was extremely frustrated and he was often left with no other option but to express himself with his behaviour.

I quickly realised this wasn’t a straightforward language delay and that Little Bear’s needs met the criteria for Developmental Language Disorder

At the time I had no idea what the prognosis would be but I suspected it wasn’t rosy and that speech and language therapy would be a big part of our lives for years to come. It was hard to know where to start and easy to become overwhelmed by priorities. There were times I really questioned my faith in what I was doing and wondered if we’d ever get to where we were hoping to go.

I did not expect, in my wildest dreams, that 2 and a half years later a speech and language therapist would observe Little Bear in his mainstream classroom and say there was no discernible difference in language skills between himself and his peers and deem him ready for discharge. Yes, his attention and listening skills still mark him out and there are some minor speech errors but his comprehension and expressive language skills are now within the expected range for his age.

This near miraculous improvement is due wholly to one thing: speech and language therapy.

Admittedly our circumstances are unusual: most children with DLD do not have a parent who is a speech and language therapist and able to provide targeted intervention on tap 24/7. Little Bear has essentially undergone an intensive 2 and a half year block of therapy. Strategies have been used by the whole family and are an automatic part of the way we talk with Little Bear, not something we use for just a couple of minutes each day. The key strategies have included: using environmental sounds to capture Little Bear’s interest as a way in to listening to language; reducing our language; modelling of vocabulary, sentence structures and sound patterns; repetition; showing, explaining & checking understanding of complex concepts or new words as well as seizing every possible communication opportunity. We have done some direct work on auditory memory, phonological awareness (initial sounds, syllables, rhyme, blending sounds together) and speech sounds.

I suppose at any one time I have always had a current communication aim in mind, whether it has been a specific language concept or speech sound and I have found ways to weave this into play or our usual day to day lives. I have very rarely, if at all, asked Little Bear to sit at a table and ‘do speech therapy’, it has been a much more holistic and inbuilt approach than that.

Little Bear has also been seen by an NHS speech and language therapist throughout the past 10 months or so. She has taken the lead on sorting out Little Bear’s disordered vowels which have been complex to assess and set goals for. Generally she has started us off with a sound or activity and we have carried it on between sessions.

The NHS therapist has also set language goals for school and has provided them with programmes to carry out, which they have done.

All of these strategies, techniques and approaches have worked. Their effectiveness is inarguable. Yes, the sum total of the input Little Bear has had is massive and yes, me being a speech and language therapist does make things different. However, I truly believe that a similar impact could be gained by providing parents with good quality, strategy based communication training alongside regular sessions with a speech and language therapist, who could do the assessing and target setting bits, as well as providing resources and guidance. Similarly, if speech and language techniques can be embedded into teaching and used holistically as part of the curriculum (not here and there for 10 minutes) that too can be highly effective and impactful.

Little Bear is living and breathing proof of the efficacy of speech and language intervention. Prior to treatment when I’m almost certain that no strategies were in place, he made negligible progress. In fact, on entering pre-school shortly after coming home, Little Bear was assessed as having a delay of more than 2 years in all areas of his development, with speech and language and numeracy being the most delayed areas. Within 2.5 years of therapy, that gap has closed (meaning that Little Bear has essentially made 4.5 years’ worth of progress) and his comprehension and expression now measure within age expectations on standardised assessment.

Speech and Language Therapy works.

Whilst his progress has been phenomenal, I should point out that speech therapy is not a panacea. Little Bear still has DLD and I suspect it will impact him to a greater or lesser degree into adulthood but what therapy has done for him is allowed him to reach his communication potential, despite having DLD. Little Bear still finds it difficult to learn new vocabulary and to figure out the sound patterns in new words but we know what to do and the strategies work. The approaches that we have built into our daily lives will continue as Little Bear is still going to need them and it is imperative we continue to strive for that meeting of full potential. As the demands of the curriculum increase, we might find we need to access formal therapy again and that would be okay too.

I feel extremely proud of Little Bear’s progress and find myself constantly marvelling at the things he can say now. Last week he took part in his second school assembly. He learned more than double the words he managed last time and was able to recite them in front of the school without any prompts at all. The naughty streak in me did notice that other children in his class had to read their lines or forgot them completely (I don’t mean that badly, it’s just he has never been able to keep up with them before, let alone outshine anyone and he’s more than earned his moment of glory). Not only that but he sat really well throughout, no teacher attached to his side like previously, and he spoke loudly and clearly. Several people came to me afterwards to comment on how well he had done, the difference being so stark in comparison to previous public appearances.

I am truly grateful to speech and language therapy for not only giving me a career I love but for unlocking my son.

 

 

I think I had better make some changes to my workshop too. Although people need to see the bleak picture, they also need to see the sunshine over the rainbow picture that can be gained by using the strategies and applying them diligently. Little Bear’s prognosis appeared extremely poor so his progress really is a beacon of hope.

 

 

A Confession

Readers, I have a confession to make. It is something I expect Society will disapprove of. It will certainly be frowned upon, if not judged very negatively, by most. I’m just going to spit it out: Little Bear still has a dummy.

I suspect this is controversial for two reasons. Firstly because Little Bear is 5, on the nearer to six side of things, and typically children give up their dummies whilst still pre-schoolers. Secondly, because I, his mother, am a Speech and Language Therapist (SaLT) who not only should know better but should be militantly opposed to dummies full stop.

It may make me a rubbish SaLT (I’ll take the chance) but I am not opposed to dummies. I certainly think they have their uses. Big Bear had one (ok, about nine) and was particularly attached to them, often sleeping with one in his mouth and one in his hand.

Initially, I tried extremely hard not to give him one, thinking it would make me a bad parent (as well as a bad therapist) if I did. However, after about 7 weeks of following the NHS guidance to demand feed, I had been feeding Big Bear around the clock and when I wasn’t doing that he was latching on to anything and everything (my arm, Grizzly’s nose etc.). I had to acquiesce to save my sanity, as well as my nipples.

Looking back, there are so many things to beat yourself up about as a new parent that I genuinely don’t think a dummy should be one of them. There are two main risks with dummy use: the impact on the infant’s teeth and the impact on their speech. Unless a child is plugged in constantly (wrong on many levels), an average amount of dummy-use is really only damaging to speech if a child speaks with the dummy in their mouth*. I have found that fairly easily solved with a ‘no talking with your dummy in’ rule, which I do stick to religiously. It hasn’t hampered either Bear from being a chatterbox. The dummy hasn’t stopped them talking, they have just got used to taking it out of their mouths to do so.

As Big Bear approached three years of age, his speech was developing well but I began to notice a change in his teeth. They were starting to angle outwards a little. It was obvious it was the dummy and it had to go. Although I knew he didn’t need it, I did know that he liked it A LOT and I was pretty trepidatious about the big withdrawal. Exactly how many nights would he scream for?!

I knew cold-turkey was really the only way but I wanted him to be as prepared as possible. We talked about dummy fairies and invented some sort of fable about what good purpose they put discarded dummies to (I can’t quite remember the details). I’m not ashamed to say we also used a good portion of bribery – those dummy fairies give a good reward! We left all the dummies outside on a plate on the allocated day (because clearly the fairies live outdoors) and the next morning a Lego truck had magically appeared in their place. The deed was done.

In reality we had one or two nights of Big Bear struggling to get to sleep but there was none of the fuss and palaver I had imagined. The big dummy withdrawal was, dare I say, pretty easy.

Several years later when we were in the process of Matching with Little Bear, it transpired that at the age of three and a half, he still had a dummy. Tut, tut, we said. How awful! He really should be rid of it by now! Just give it to the dummy fairies: how hard could it be?!

In our naivety I think we even suggested the Foster Carer’s should do the deed before he came to us.

The outrage! A three and a half year old with a dummy!

Yet, here we are, over two years later, the three and a half year old is now nearly six and he still has the dummy. So what has gone wrong?

Have I been too chicken this time?

No. Not too chicken. A little older, a little wiser and a LOT more tuned in. I haven’t taken Little Bear’s dummy away because he still needs it. Along with his blanket, it is the only thing that is guaranteed to calm him.

Usually the dummy and blanket live in his bedroom and Little Bear only has them after his bedtime stories when the light is going off. Most of the time he half forgets about them and can fall asleep without them. However, there are still days when he pads sheepishly downstairs with them, lays curled in the foetal position on the sofa and disappears off into his calm place for a couple of hours. If I didn’t let Little Bear have his dummy on that sort of day, he would prowl about, itchy, discontented and ill at ease. He would seek trouble, struggle with instruction and generally have a very difficult day. The relief and release when he gets the dummy is almost palpable.

When Little Bear was younger/ newer to our family we daren’t go on any car journey without the dummy and blanket secreted in my handbag “just in case”. There were months when they were literally the only way to calm him (though there was also a risk he’d lob it at your head).

We have many more available and effective calming strategies now and don’t take the dummy anywhere any more (apart from on holiday). However, when Little Bear starts wandering around the house with it, it is the equivalent of a red warning light. It means that Little Bear is not feeling good. We might not know why and neither may he, but it alerts us that he needs something different today. It generally means he needs few demands, lots of TV, cheesy pasta for tea, somebody to feed it to him and an early night. As yet, Little Bear can’t communicate this to us any other way so we have to rely on the medium of dummy interpretation. He has a wide enough vocabulary now but I don’t think he can pinpoint how he feels, let alone interpret the feeling enough to be able to voice it.

Although these are all valid points, there is something else, more fundamental, that is holding me back.

The dummy and blanket are the only things I can think of that Little Bear has always had. They have travelled with him (one assumes) from his birth family to foster care and from there to us, providing him with a reliable and consistent source of comfort along the way. Perhaps I should say that they are the only reliable and consistent source of comfort he has ever had. You would usually anticipate that the reliable and consistent source of comfort would be your Mum or Dad but as Little Bear has had three different ones of each and not one of them has accompanied him on his whole journey, he has had no choice but to seek an alternative source.

How can I, hand on heart, take away that consistent and reliable source of comfort? I genuinely don’t think that I can or, more importantly, that I should. Having had so little control over what has happened in his life I think I can hand over the reins of this one to Little Bear himself.

I know that Society will stand in judgement, as I too probably would have done a few years ago. I know Society will consider him too old and my behaviour in allowing it to be atypical. I have decided that I care not one jot. Sometimes I make that type of decision quietly. What wider Society doesn’t know about won’t bother them. However, if I really don’t care what anyone thinks and I genuinely believe I am acting with the best of intentions, why should I hide it? Society needs to become accepting of the fact that not all children follow a typical pattern of development and therefore will not adhere to the rigid expectations we set out, whether anybody likes it or not.

Last week I read a blog on a similar theme, though it was about using a baby carrier with a three year old, and I realised this type of age-related pigeonholing is happening left, right and Chelsea (It was written by @LivingtheTheory and you can read it here: http://living-the-theory.blogspot.co.uk/2017/12/thats-no-no-now-hes-getting-bigger.html ) Can we please quit it with the chronological age expectations and think developmental needs? So what if a toddler still needs to be close to his Mum when they are out and about? So what if my 5 year old still needs me to feed him sometimes? So what if a sixteen year old with severe learning difficulties still wants to carry a teddy around? So what if a ten year old still needs a pull-up at night? So what? All children have different needs. I’m not sure we need to get our knickers in a twist about it.

I have no idea how long Little Bear is going to need his dummy and blanket. I don’t think it is something I can set an age-related target for. Will he still have it when he’s a grown man? Somehow I doubt it.

 

*The main impact on speech of having a dummy is that children talk around it and inevitably start to form some of their speech sounds incorrectly. It is usually the tongue-tip sounds that are affected the most as the dummy prevents the tongue tip from reaching the alveolar ridge (the flat hard ridge behind your top teeth) , a place it needs to be in order to make accurate t, s, l, n, d, z sounds. A tell-tale sign of too much dummy use is the presence of a process called ‘backing’ in a child’s speech. The front sound ‘t’ is made at the back instead, so it sounds like ‘k’. Everywhere a child should use a ‘t’, they will use a ‘k’, so ‘tea’ sounds like ‘key’ etc.
Dummy use isn’t the sole cause of this process, it could just happen anyway, but it is not a process usually seen in typical development so can be a red flag.
As Little Bear has Developmental Language Disorder, with accompanying speech disorder, I would be stupid to allow him to speak around his dummy. Interestingly, although he has had many atypical processes in his speech, backing has not been one of them.
However long a child needs their dummy, I do believe that speaking with it in is a massive no-no at any stage.

For the record I do care about Little Bear’s teeth too. He has regular checks at the dentist and so far they are lovely and straight (as are Big Bear’s adult teeth).

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Credit Where Credit Is Due

When Little Bear’s Speech and Language Therapist and I met one another things could have gone either way. There was certainly a high risk of a strained relationship. As I had already made two formal complaints about the Service and she knew I was a Speech and Language Therapist too, she probably came to the first session with some pre-conceived ideas of how I might be. I imagine she thought I would be hard work, difficult to please and all-round a bit of a nightmare parent to have on your caseload.

I also came to that first session with some concerns. Our experience of the Service so far had been appalling (hence the complaints) and I was feeling embarrassed by association. I was worried that Little Bear wouldn’t get his needs recognised or met and that every session would be cringe-inducingly awkward.

Fast-forward seven months and I’m pleased to report that we have weathered the storm. Just as I felt it was important to speak-up when the treatment we received was poor, I also feel you should give credit where credit is due.

Things did go fairly well from the beginning because she (let’s call her Helen) listened to me and tried to anticipate what I needed from the sessions, as well as being lovely with Little Bear. We have now been working together (and I truly believe that is how we have done it) for some time and Little Bear has made a lot of progress. We have targeted three different vowel sounds in turn which he has learned to articulate and has successfully generalised into his everyday speech. Helen has also set language targets and provided materials for school to work on.

Helen has recently re-assessed Little Bear to decide on next steps. Her assessment showed that Little Bear has moved from the 5^th and 16^th percentile on two comprehension subtests to the 16^th and 63^rd respectively, both scores now within the expected range for his age. He has also acquired a 4^th vowel sound which we haven’t targeted in therapy. He has made incredible progress.

At the session before last Helen wondered aloud whether Little Bear might be ready to switch to the school part of their service now. As he has top-up funding he is eligible (in our area) for speech and language therapy visits to school. As he had made so much progress she wondered whether the time might be right.

I didn’t say much as I knew we still had further assessment to complete but when I left the session I had some nagging doubts. If he got seen in school, who would the therapist be? I’d have to get to know them from scratch and crucially so would Little Bear. How much involvement would I be able to have? Would the session take place without me being there? Although Little Bear has done really well with therapy, his speech continues to be peppered with errors and he is by no means ‘cured’ yet. I’d have to voice my thoughts next time.

However, when it came to the next time, I didn’t have to voice anything. Helen was one step ahead.

She had gone away and spoken with the school therapy lead and almost had a supervision session about Little Bear. I think it’s a sign of a good therapist when you can go away and reflect and ask other’s opinions. She is a very experienced therapist but knows that another perspective and some time to think can be really useful.

She happened to have some students with her during our session and took advantage of having someone to entertain Little Bear, allowing us the chance to talk. She suggested we had an honest discussion about how we both feel Little Bear is getting on and what should happen next. We went through each area of Little Bear’s communication and I told her how he’s doing with it, in real life, outside of clinic.

She told me that on reflection, she has some concerns about Little Bear moving to the other part of the service. She is worried about how he will cope, given his background, with getting to know another new person. She feels that both she and he, and she and I, have developed a good, effective therapeutic relationship. She is wondering about the benefits of trying to switch this relationship to somebody else. I wholeheartedly agreed with both of these things. I think it made it easier for me to be honest as she was so direct.

We agreed that although it is not ideal bringing Little Bear out of school to go to a clinic environment it is working well for him, he is used to it and it is manageable. We agreed we would continue in this way as it is better for Little Bear. It is not the usual protocol but Helen sees the need to be flexible to best meet his needs, as good therapy should.

As Little Bear is entitled to school input, Helen and her Manager have agreed to some flexibility about school visiting and Helen can do a classroom observation if I think that would be useful (she is usually clinic based only). I definitely think it would be useful to have another pair of eyes in the classroom. I have been desperate at points to go and observe myself but obviously as a parent it wouldn’t be appropriate. However, I value Helen’s opinion and it would be useful to know what is going on communication-wise in school, especially with Little Bear’s TA.

We then completed the prioritisation system particular to our local Trust. Helen allowed me to be a partner in this. We were mostly in agreement anyway but where we weren’t we went for the middle of our scores. I think it must be extremely difficult for her having another SaLT in all of her sessions and I find it hard knowing what involvement I should/shouldn’t have. I’m so grateful that she has acknowledged my background and we don’t have to pretend I’m not a SaLT. Ideal or not I am one and I can’t pretend that I don’t have knowledge that I do (although initially that was my intention).

I did acknowledge this with Helen and she said she is very mindful that Little Bear gets what everyone gets and they don’t just rely on him getting what he needs through me. She also said that if a parent had learning needs, they would adapt their approach accordingly. I happen to have a little more knowledge about communication than the average parent but this needn’t be a problem, they can adapt their approach for that too.

I know that not every therapist would have been able to take my profession quite as in their stride as Helen has. It is because she is confident and experienced that she knows it needn’t bother her. I have also been very careful not to comment unless invited and have acknowledged things like how difficult it is to transcribe vowels and that I would have found this challenging. Helen is the therapist and I am the parent and generally we stick to those roles. However, we do seem to have found a comfortable place in the middle where we discuss Little Bear’s needs on a level and plan jointly, as two co-professionals would. I suppose she has allowed me the role of professional parent, the specialist in my child, in a way that many parents, particularly adopters, are often denied.

We went on to co-write aims for the upcoming sessions of therapy.

Helen was clear that she will not be keeping Little Bear on the caseload forever. I know this and I don’t want her to but I do hope we are in agreement about when the time is right to stop. The prioritisation score we agreed on indicated that direct therapy is still needed so we are in agreement at the moment that the sessions should continue. We have two more vowels in our sights as well as some updated language targets.

I came away from the session extremely grateful at the way things have turned out. It shows that you can stand up for your child, make complaints and still go on to have a great relationship with a professional. As a parent you can get your views heard and you can get your child’s needs met if you persevere. I think Helen has been surprised that I’m not the nightmare I seemed on paper, I am just a parent who wants the best for their child and I am fully prepared to work together to achieve that. I will say what I think and I will point out bad practise but if things are going well, I will acknowledge that and praise it. We have a good working relationship and despite the odds I would even go so far as to say we that we really quite like one-another.

When we have finished therapy I will be writing to Helen’s manager to thank her for the service we have received and to recognise the great job Helen has done.

 

I have written a lot about Speech and Language Therapy and our experiences. You can read more here if you are interested: Developmental Language Disorder, Communication Difficulties: Update, SaLT, EP & an Assembly, Another try at SaLT, A bit of a rant, Living with Speech and Language Difficulties