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.

 

 

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Speech Therapy Works

Football: A Yardstick for Progress?

Back in the summer of ’15 (no, I am not re-inventing a song) Little Bear had just arrived. It was both a blessing and a curse that this momentous event had taken place during the summer holidays. It was great because it answered the question of how we were going to possibly manage meeting our youngest son a couple of hundred miles away whilst also managing the needs of our elder school-age child.

However, once we were back, the days stretched out interminably ahead of us. Grizzly and I were both on leave and there was no school or pre-school to give some much-needed structure to our days. There was just us and a very unruly seeming energetic mass of a child who at the very minimum needed to be kept out of immediate danger all the livelong day. With the benefit of hindsight I can say that he was traumatised and emotionally at sea. At the time I don’t think we quite knew what had hit us and I’m pretty sure we had barely a second to think about it.

We discovered, within the first hour of his arrival, that being inside the house with Little Bear was kind of difficult. He could not be contained in one room and wandered, nay prowled about, seemingly looking for the most dangerous or unwanted (by adults) tasks to engage in. He was everywhere: up shelves, in cupboards, under furniture. Little Bear was not in any way tuned into language so didn’t respond to any verbal means of trying to shape his behaviour. We spent the first weeks trailing after him, like a Police dog trailing a criminal, trying to anticipate what he might do next, trying to keep up with him, trying to offer distraction. We had to physically remove him from dangerous situations, which triggered his fight response and we were often bitten, scratched, hit or kicked.

It quickly became apparent that we might fair slightly better outside. Wide open spaces were good because there weren’t many things you couldn’t touch and Little Bear could be freer. Obviously the not responding to language thing was tricky, especially when you wanted him to come back. There was many an occasion when Grizzly had to sprint after him but notwithstanding that, things were easier.

You cannot actually live your life in a field though so we did have to try to make do with our small-ish back garden some of the time.

Left to his own devices, Little Bear would have spent the whole day watering the garden with the hose until a flood came and we would have needed Noah on speed-dial. We did of course allow Little Bear some hose time but it was essential we introduced some parameters if we were ever going to gain a modicum of order. As an aside, on one occasion of supervised hosing, Little Bear accidentally caught the sunlight at just the perfect angle to create a rainbow. It was one of the first times he responded to my communication to “look” and together we shared the same reference point and together marvelled at the amazing rainbow. I remember feeling more happy than you might think about that because I had actually reached him. After that we often tried to make a rainbow collaboratively and he began to see the point of me in an interaction. He also learned the word “rainbow” which was a big deal in his otherwise depleted vocabulary.

While the rainbow moment was a mini-turning point, I still did not want a flooded garden and knew that Little Bear needed help to engage with other outdoor activities too. Big Bear was 6 at this point and had recently got very into football. He was keen to be outdoors and was never far from a ball. Little Bear was also interested in the ball and generally ran straight though the middle of a kick-about with the sole purpose of nicking said ball. This was incredibly annoying from Big Bear’s point of view.

We tried to explain that Little Bear was little and didn’t understand games yet or that there were rules and he was really just trying to play. Big Bear could entertain this type of reasoning and would try to follow Little Bear’s lead. Little Bear would pick up the ball and run off, saying ‘catch me’ and looking for you to chase him. Big Bear or one of us would oblige. As he was shouting ‘catch me, catch me’ that’s what we tried to do. Only, when we did catch him, all hell would break loose. I guess because when the catching actually happened he decided he didn’t want it after all. I suppose being grabbed by people you aren’t sure if you trust yet is pretty frightening.

Little Bear would cry, we would be scratched. We would try some reasoning but Little Bear couldn’t process it. Five minutes later Little Bear would be running off with the ball shouting ‘catch me, catch me’ and the whole merry-go-round would begin again.

It was very difficult to manage or to see how to manage it a different way. All we knew was, it was a very inauspicious start to a footballing career and we probably had not just adopted the future David Beckham.

In the summer of 2016, things had developed a little. Big Bear was now getting good at football and wanted to practice properly. Little Bear had fallen totally in love with his brother and wanted to do whatever he was doing. If Big Bear was playing football, Little Bear was close by. Unfortunately he still had a penchant for ball-snatching and though Big Bear is extremely patient with him, it really did push his patience to breaking point. Most football games ended in one or the other or both in tears or storming off.

By this point Big Bear was pretty knowledgeable about the rules of the beautiful game and both he and Grizzly did their utmost to teach the basics to Little Bear. There were a few problems. One was that Little Bear could be (and still can be at times) rather oppositional so rules were like a red rag to a bull. If you told him he wasn’t allowed to pick up the ball, his first urge was to pick up the ball. Another problem is that Little Bear had very poor resilience then and the smallest knock or comment or his own perception that he had done something bad would be enough to cause him to purposefully kick the ball out of play or boot it at someone or call someone a name or hit them. Football continued to be a source of stress, distress and very little enjoyment for anyone involved.

Thankfully for Big Bear, he played football at an after-school club and he joined a club outside of school so he could get his fix somewhere. Interestingly, he had had a rough time because he didn’t like football when he was younger and it had really impacted on his ability to be accepted by the other boys. We had been reluctant about allowing him to join a club as it can be so competitive and the last thing we wanted was for his confidence to take a further knock, for example by being kept on the bench if he wasn’t perceived to be good enough.

Grizzly researched all the options and found a club with an inclusive ethos where all children get an equal go, irrespective of how good they are. Despite our reservations, it was a fantastic experience for Big Bear and did wonders for his confidence, both inside and outside of school. He continues to play for them now and apart from a recent appearance of nerves (a whole other tale, there is always something!) he loves it.

By the summer of 2017 a glimmer of football-related hope began to appear. Little Bear was beginning to tolerate the rules. He accepted they were there but was often in conflict with himself over sticking to them. He was still easily upset and something like the other team scoring a goal could be enough to cause a bit of a situation. However, the situation was generally less dramatic than before and mostly involved him stropping off to a corner of the garden for five minutes.

Alongside this, Little Bear’s language skills had now developed unrecognisably. We could start to talk about how he was feeling and what might be causing his behaviour. We could say things like “I think you are feeling a bit frustrated because the other team scored. That’s ok. Sit there for five minutes then join in again when you’re ready”. We generally didn’t make too much of a fuss and often if we ignored the outburst he would just join in again a few seconds later by himself. We always praised the good decision he had made to come back. We also tried some other techniques like bringing a squidgy stress toy outside with us and Little Bear would go and squeeze that if he was getting annoyed, rather than shouting at somebody or running off with the ball.

Football still had its moments but as the summer wore on I realised that the boys were starting to have a kick-about on their own after tea, while I did the washing up (handily positioned in front of the back window where I could keep a watchful eye). More often than not, the game would go without hitch and I would silently count my blessings when they came back in. They even started to set each other up for specific bits of play e.g. Little Bear would throw the ball so Big Bear could volley it in. Maybe football could be fun in the Bear household after all?

Not long after term started again, Little Bear began asking to join the after school football club that Big Bear attended. I had a lot of concerns. He is extremely tired after school, making listening harder than usual. We were having a very rough phase in the classroom and Little Bear was frequently in trouble for being disruptive. The guy who runs the football is lovely but not especially firm and I’d always rather suspected the children ran amok. Little Bear is not a child who should be allowed to run amok. It is not wise. It could be extremely detrimental.

Little Bear clearly wanted to go though and I had to listen. I decided this was a rare time that a sticker chart might work. I was clear with Little Bear that I couldn’t let him go to the club if he wasn’t going to listen to what he was told because that could be dangerous. The rules would be there to keep him and his friends safe. He gained stickers by doing what he was asked in school, at home and if he was with others like his grandparents. If he didn’t manage to do as he was asked, nothing happened. If he did manage to, a big fuss was made about his ability to make good decisions and he got a sticker.

By October half term the chart was full and I kept to my word and signed him up. I did speak with the football coach about Little Bear’s needs; that rules need to be clear and consistent for him and that he needs to know that the coach and I will talk and if things are not going well, the coach will tell me.

I knew I had to let him try but I was worried.

Last week, out of the blue, I received this message:

Just a quick one, I know you were unsure about signing Little Bear up for football but he has been amazing! I love coaching him, football or PE, just wanted to drop you a message to let you know. And then Big Bear is something else, great kid that doesn’t get the credit he deserves, he’s fantastic.

And my heart melted.

How lovely of the coach to take the time to send me that? I wonder if he really knows how much that means?

I couldn’t possibly have predicted, back in 2005, mid back garden flood, that my little dude would be able to overcome so many hurdles that he would be able to not just cope but flourish in a football club only 2 years later. He’s a phenomenon.

Maybe we did adopt the future David Beckham after all?!

 

And as for Big Bear, he is an extremely patient and lovely big brother and I hope that I at least give him the credit he deserves.

Football: A Yardstick for Progress?

Fantasy versus Reality

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

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

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

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

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

Apparently.

According to Little Bear, anyway.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

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

 

Has my nose just growed?

 

Fantasy versus Reality

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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A Confession

Developmental Language Disorder

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

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

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

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

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

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

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

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

FullSizeRender (10)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

 

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

Developmental Language Disorder

SaLT, EP & an Assembly

It has been a busy week at Bear HQ for meetings with professionals and thinking about Little Bear’s needs. On Wednesday we had our second session with his Speech and Language Therapist (SaLT); on Thursday Grizzly and I met with school and the Educational Psychologist (EP) and today Little Bear had an assembly and his first taste of public speaking. Each event has been thought provoking in its own way.

SaLT Session 2:

This week’s session consisted of further assessment and rapport building. The Therapist is continuing to impress me. This week she gave me the assessment findings from the previous week as she said she would. I find it is all very well professionals promising things but it is the actually doing them that earns brownie points.

The results are interesting, with scores ranging from the 5th to 75th percentiles. For those not familiar with percentiles, a score at the 5th percentile means that if you took 100 children the same age as Little Bear, he would score better than only 5 of them but at the 75th percentile, he is scoring better than ¾ of them. It is an unusual and atypical scoring profile. You would usually expect children to have a cluster of scores round about the same level across all of their skills. As all of these scores relate to his comprehension (understanding) of language it is even more unusual but nevertheless it is as I had expected for him.

Little Bear scored well on his understanding of basic concepts such as hot/cold, same/different, in/on/under. We have worked on these concepts so I would expect his knowledge to be fairly good. The longer or more complex an instruction became, the more difficult Little Bear found it to follow. Instructions containing more complex concepts such as before/after and ‘all except’ were also tricky for him. This fits with our feeling that he can understand a lot more than he used to but that we still need to simplify our language and that the more complex an idea is, the more repetition Little Bear needs.

His grasp of different sentence structures was at the lower end of the expected range and was impacted by his lack of awareness of pronouns.

Despite all that, the scores do also reflect positive progress as at first assessment (when he was seen briefly by a private provider in his pre-school) all his scores were at the 1st percentile. That shows me that his attention and ability to be assessed has improved as well as SaLT input having being effective. Working on language really does make measurable differences in performance. It will be  interesting to see how his scores change over time, especially now that he is having formal therapy alongside the things we do at home.

The Therapist gained more brownie points as she had evidently reflected on Little Bear since our last session. She had noted the unusual quality of his speech and had suspected his vowel sounds might be distorted. This is not a typical pattern of errors and is not a part of “normal development” i.e. most children make speech errors when they are first learning to speak. The errors usually follow a pattern e.g. back sounds such as ‘k’ are made at the front of the mouth instead sounding like ‘t’. This is an expected part of development and it usually rights itself as children develop. However, making vowel distortions is not a typical developmental process. In fact it is fairly rare and neither Little Bear’s Therapist nor myself have ever tackled it in therapy before. Little Bear’s Therapist could have pretended to me that she did know what to do and could have just made up some therapy as she went along. However, she identified that she needed to know more and discussed Little Bear with a colleague who specialises in hearing impairment and would be more knowledgeable about vowels. Consequently she now has a more targeted assessment that she is going to try next week. I find this honesty and seeking of support reassuring. It is important to know when you don’t know. In my view, it makes her more competent, not less. There is nothing worse than somebody who doesn’t know that they don’t know (“unconscious incompetence”) and just blunders on anyway.

The other thing this conversation did for me was provide me with relief that finally another professional (who isn’t me) has identified that Little Bear does not have run of the mill SaLT difficulties and that between his spiky language profile and his dodgy vowels, he does have a Speech and Language Disorder not a straightforward language delay. For any SaLT’s reading, she has not used the new terminology of “Developmental Language Disorder” yet, a term which I do think applies. It will be interesting to see whether she does as we go forwards.

Meeting the EP again

We first met the EP a few weeks ago when we had a consultation meeting. You can read about it here: Seeing the Educational Psychologist

Since then he has spent a morning in class with Little Bear. He observed and played with him and took him out of class for some formal assessment. His teacher told me on the day that Little Bear had been exceptionally well behaved and she wasn’t sure the EP would have seen all the things we had been worried about.

Interestingly the first point that he raised at our feedback meeting was that he had noted Little Bear playing well and interacting appropriately but mostly minding his own business. He had observed on a number of occasions that some of the other boys were quick to blame him for various things when in fact he hadn’t done anything wrong at all. We have had our suspicions about scapegoating and other children exploiting Little Bear’s difficulties with communication but it is different to have that confirmed by a neutral professional. Obviously it is completely wrong and worrying because nobody wants their child to be victimised. I am glad that school are aware of it but I do understand their difficulty in policing everything that happens as they can’t be everywhere or see everything. We shall be keeping a very close eye though.

In general, the EP was pleased with Little Bear’s social and play development. He had carried out some assessment and that showed Little Bear’s non-verbal (cognitive) scores to be around the 10th percentile (below average) and his verbal score to be around the 38th (within the average range). This result is completely at odds with my hunch which is that Little Bear has good cognitive skills and significantly poorer speech and language skills. I think there are a few reasons why it may have come out this way:

  • We have worked A LOT on language and Little Bear has made a lot of progress. We have probably worked on the types of activity that were used in the verbal assessment but not on the ones in the non-verbal bit so he was essentially more practised at the verbal one
  • The verbal assessment used won’t be as accurate as anything used by the SaLT
  • It is difficult to truly separate verbal and non-verbal abilities when so many activities intrinsically rely on language knowledge. The EP talked about picture matching activities such as bird with nest and dog with ? This type of task relies on a child’s knowledge of vocabulary and the meaning of words (semantics). It relies on them having good semantic links between words, something I suspect Little Bear doesn’t have. He does have a lot of words now but I suspect they are stored in a jumble, not nice and orderly and therefore it is hard for him to find the ones that should go together. I feel this says more about his language ability than his cognitive function.

Although the EP is lovely and I have found him very useful, this just highlighted to me how pernicious language difficulties are and how difficult it is to get even very educated professionals to truly understand the impact of them. I am so grateful that I finally have another SaLT on side who really does GET IT. I hope.

The rest of the meeting was taken up with reviewing the strategies already put in place. I was very pleased that school were able to give detailed feedback so are evidently using the strategies and they seem to be working well.

We also discussed transition to year 1. Thankfully Little Bear’s teacher is going to move up with him which assuages a lot of our concerns but it is the jump from EYFS provision to more formal learning that is worrying us all. Little Bear is certainly not ready to sit at a desk all day or to complete learning tasks independently. School are absolutely brilliant at providing him with the specific intervention he needs but we have all agreed to apply for funding in the hope that this will secure ALL the right things next year, when a TA in the classroom is not a given. Next week’s job will be completing all the paperwork…

Assembly:

During the Easter break we were tasked with helping Little Bear learn his words for today’s assembly. I was a bit concerned as only a couple of months ago, Little Bear struggled to hold 3 numbers in his auditory memory long enough to repeat them back to me. Learning words was not going to be easy for him. Yet today he stood up in front of the whole school and a load of parents, walked sensibly to the microphone and speaking loudly, without any sort of prompt, said all of his words: “Every day we are running or walking a mile and its keeping us fit and healthy”. I don’t think everyone understood what he was saying but I don’t care because it was a phenomenal achievement for him.

I have just picked him up from school and he has the dreaded take home book. I absentmindedly flicked through it when he handed it to me and was shocked to see pages of children’s handwriting. “Oh God, look at this” I said, waving it under my friend’s nose. “Don’t worry” he tried to reassure me “they’ve had that for a week”. I didn’t like to tell him that it wouldn’t matter how long we had it for, Little Bear still wouldn’t be able to write more than a copied or dictated very tiny sentence. It is SO hard not to compare and not to feel disheartened. However, I know that my gorgeous little dude is working as hard as he can with every fibre of his being and in his language disordered world, learning 16 words off by heart is incredible. Writing or no writing, he’s still incredible.

 

SaLT, EP & an Assembly

Too fast, too hard, too loud

Little Bear’s sensory needs can pretty much be summed up by the title of this post. Why walk if you can run instead? Why move things gently if you can slam them? Why say things quietly when you can shout?

Like many children who have experienced early neglect, Little Bear does have some quirks in his sensory system. However, as evidenced by the fact that it has taken me 51 posts to get around to talking about it, his needs are not that severe in the grand scheme of things. I’ve certainly met children who are more sensory seeking; whose whole environment needs to be changed to help them get the sensory input they crave; who cannot engage in everyday tasks in a functional way because they have to incessantly hunt for sensory stimulation.

Little Bear can function well enough in his everyday life, though we do notice that his sensory system is a little different at times.

I think we mainly notice it when we have to overuse the word “gently”. Little Bear finds it hard to grade his movements, always going in too hard. I constantly have to remind him that if he bashes his toys together they will break. Little Bear is what you would probably describe as “heavy handed” and is fairly prone to breaking things. It is no longer purposeful but usually due to accidentally pulling/ pushing/ pressing/ bashing too hard. He has written off many a felt tip pen and I have to buy the kind with an indestructible nib. We always have to consider the robustness of a toy before purchasing anything for him.

Little Bear often comes in with too much force for cuddles too, frequently head first. We must be used to dodging but if someone is caught unawares it tends to really hurt them whereas Little Bear hardly feels it. I guess all the head-banging he used to do may well have contributed to this. On a positive note, we have noticed that Little Bear seems to be getting more sensitive to touch on his head and does frequently cry now if he accidentally bashes himself (his head is currently at door handle height so he seems to bash it quite often) which is a far more ‘normal’ reaction than not really noticing that he’s injured himself.

The surprising thing is that Little Bear can be really gentle when he tries: he will stroke your face or stroke the cats with the right amount of pressure but during play or when he isn’t consciously thinking about it, his default is to crash and bash.

Little Bear seeks movement too and can often be found bouncing/ jumping/ hanging upside down. As soon as we get outside he has a tendency to run. We are quite outside-y as a family so Little Bear gets plenty of exercise as part of day to day life which probably helps to regulate his system. However, as I’ve got to know Little Bear better I have realised that when he starts bouncing and spinning all over the place it is not necessarily a sign that he needs more exercise. Sometimes it seems to be more of a self-stimulating activity that he uses when he’s tired or getting over-excited. It usually means that he needs calming and a rest. Giving him more movement at this point is likely to tip him further into over-stimulated territory.

Little Bear is more easily over-stimulated than your average child and when he gets to that point, he cannot yet bring himself back from it. There will undoubtedly be a period of him being generally out of control followed by a meltdown. As his parent I have to be vigilant of his level of sensory alertness and I have to intervene to stop him from getting to that point. I think it can sometimes seem as though I spoil his fun, especially when it comes to rough and tumble play. However, I can see him getting more and more excited and I know that he isn’t able to regulate this aspect of himself yet. He needs external help to identify when he has had enough and to find ways appropriate ways to calm down.

Little Bear is also pretty loud. I’m not sure I can totally blame his sensory system as Big Bear is one of the loudest children you could meet so he might just be following his brother’s example! However, Little Bear is loud within his own right. In his nativity play this week, he understandably struggled to learn the myriad of words needed to be able to join in with the songs but what he lacked in clarity, he certainly made up for in volume!

Interestingly for me, with my Speech and Language Therapy hat on, Little Bear is also too noisy in his speech. Most sounds in English have a voiced (noisy) and voiceless (quiet) counterpart. For example, ‘t’ and ‘d’ sounds are made in exactly the same way in your mouth. The only difference between them is that to make a ‘d’ sound your vocal cords vibrate but for a ‘t’ they do not. Therefore ‘d’ is really just a noisy ‘t’. Little Bear replaces almost all the quiet sounds with their noisy partners e.g. he says “gat” instead of ‘cat’, “bear” instead of ‘pear’, “do” instead of ‘two’. It is one of the reasons his speech has such an unusual quality to it and why he is so difficult to understand.

Little Bear obviously has quite significant speech and language difficulties but I do wonder whether some aspects of those difficulties are due to the way his sensorimotor system has developed.

So yes, Little Bear has his sensory quirks and at the moment he requires external help with staying regulated. However, he is not the only one with a quirky system. A little bug bear of mine (rant alert) is that people often talk about “sensory integration difficulties” while seeming to forget that we all have sensory integration systems that are constantly working to process the different stimuli that come our way. We all need to process and respond to movement, touch, smells, tastes, sounds, visual stimuli and challenges to our balance and position in space. We will all have different preferences when it comes to each sense. Some people like moving fast and being upside down and consequently love rollercoasters. Other people hate them as they make them sick and dizzy. Some people love spicy food, the spicier the better; others prefer more bland cuisine. As a migraine sufferer I am particularly sensitive to light and changes to light and will find things that others wouldn’t even notice very uncomfortable.

Everyone has a sensory integration system and everyone’s functions a little differently. Although I have described Little Bear’s in a fair amount of detail, I don’t view it as a huge problem, just a part of ‘normal’ sensory variation. Little Bear’s is different to mine which is different to Grizzly’s. As long as everyone is getting what their system needs and not too much of the things it doesn’t, we are generally ok.

I think true Sensory Integration Difficulties exist when a child can no longer function at home or in the classroom because of their need to seek or avoid certain stimuli. That is when referrals and further help are needed.

Thankfully we are not at that point. However, if you meet us you’ll hear us before you see us; brace yourself, mind your head and don’t lend Little Bear your felt tips. Oh, and I’ll sit with my back to the window ta, the light is a bit weird.

 

Too fast, too hard, too loud