Communication Difficulties: Update

Over the lifetime of my blog I have talked about Little Bear’s communication difficulties quite a bit: first of all in Living with Speech and Language Difficulties then later in A bit of a rantAnother try at SaLT and SaLT, EP & an Assembly. In the most recent posts I have focussed on our quest for formal speech and language therapy rather than Little Bear’s communication needs per se. As therapy has been going pretty well, I thought it was time for a look back at the development of Little Bear’s communication and how priorities have changed over time.

When Little Bear first arrived his primary communication need was to develop his listening and attention skills. Little Bear simply wasn’t tuned in to language – he ignored it in pretty much the same way you would ignore background noise. He didn’t see the point of it and sadly I don’t really think he thought it bore any relevance to him. Little Bear’s listening skills were poor which impacted on his ability to understand language and on our ability to get him to co-operate.

I can remember wandering around a beach with him during Introductions. In my typical SaLT fashion I talked to him as we wandered. I pointed things out and named what we saw. Little Bear found this completely alien and tried to shrug me off like a nuisance insect. I think he even took to shushing me. Equally he did not respond to his name or any other command. Getting him to behave and keeping him safe was incredibly difficult without the use of language.

Over time we worked on this, mainly by keeping listening fun to start with – lots of drawing his attention to passing noisy things such as aeroplanes or dogs or sirens. I definitely found that in order to engage Little Bear with listening, we had to start with non-language tasks. We were probably quite silly and playful too, which helped.

As Little Bear’s listening skills improved a bit, we were able to work on his comprehension at the same time. Probably as a result of the listening and attention issues, Little Bear’s understanding of language was certainly delayed for his age. We noticed that he often said “what?” and needed us to repeat things for him, sometimes several times. We all reduced our language from the beginning to help him understand as there was a clear pattern that the more complex the vocabulary or the longer the instruction/ explanation the more Little Bear struggled.

Little Bear’s vocabulary was very poor for a 3 and a half year old so we did lots and lots of modelling which has developed both his understanding and his expressive language. I think if I had to pick one strategy that has been the most effective I would say modelling. There are several reasons. Firstly you don’t need any equipment to model language – you can do it anywhere and completely spontaneously which makes it very practical within busy family life. You can easily work to your child’s level – either just modelling back their sentence without errors or by adding in an extra word to extend their sentence length. I would often have a couple of targets in mind at any one time e.g. for Little Bear to understand the concepts of same/different, so would model those concepts each time an opportunity arose in play or just when out and about.

You can use modelling to develop any aspect of communication – initially I used it mostly for vocabulary and sentence building. I have moved on to using it for grammar and speech sound accuracy. I don’t think I would have predicted that it would be as effective as it has been: Little Bear’s progress has been huge. The great thing is that it is a very positive approach and at no point has it felt like I’ve been nagging or correcting Little Bear. In fact he got so used to me using the strategy that if I didn’t model back his sentence after him he thought I wasn’t listening properly and would repeat himself until I did! This is in stark contrast to the boy who didn’t want me to talk to him at the beach.

Little Bear’s comprehension is now patchy on formal assessment. His understanding of basic concepts such as hot/cold, first/last, same/different is within the expected range. His understanding of different sentence types is at the low end of average and his understanding of complex sentences continues to be below expectations. However, in everyday life we have noticed leaps of progress.

I recall one day driving past some electrical cables that had come down in a storm. My natural instinct was to point them out and tell Little Bear about them but I remember stopping myself because I knew that he had no idea what electricity was and I wouldn’t be able to find a way to explain it that he would be able to follow. These days his wider understanding of life is growing all the time. I recently mentioned London in passing and he said “they had a nasty fire there, people died” and another time we were looking at a map and I said “that country is America” and Little Bear piped up “is that where Dobald (Donald) Trump is building his wall?”. He is full of surprises these days and it’s brilliant to see his understanding of complex concepts developing all the time.

Little Bear’s ability to express himself on arrival was also poor. I remember him saying “you came back” on the second day of Intros and this being quite a momentous sentence. On the third day he said “you came back again” which was poignant and sad and lots of things but also the longest sentence I heard him say for a while afterwards.

I don’t think it is any coincidence that Little Bear’s behaviour was as it was. His lack of ability to ask questions, negotiate, explain himself and talk himself out of situations certainly lead to a high level of frustration and anger and the unavoidable need for some very expressive behaviour.

For a long time Little Bear expressed himself through pointing and enthusiastic use of “that”. He had some stock sentences that all followed the same structure: I go running, I go playing, I go sleeping. He used the words he did have creatively to get his points across e.g.“bik” (big) meant lots, tall, deep, full, massive.

Little Bear’s expressive language now comes out as being within the expected range on the Renfrew Action Picture Test. I don’t honestly think this is an entirely accurate representation of his abilities but he does use lengthy compound sentences and I have noticed that being able to do so has helped him in many ways. Just today he had his IPad in the car and I heard a crash as though he had thrown it on the floor. “Did you throw that?” I asked him, “No Mum, I tried to put it on the seat but you went too fast and it slipped on the floor”. I have no idea if this was true but I had to credit him with the good explanation. Previously I might have wrongly assumed he had chucked it and he might have got into trouble and not been able to defend himself. Having improved language skills has definitely helped with behaviour in more ways than one.

A big indicator of Little Bear’s progress with his speech and language skills is that now he is having formal SaLT our agreed priority is his speech sound system. It is generally agreed that language should be the main priority with speech being more of a secondary skill. Our decision to focus on his speech is due to his language skills being good enough and his speech now being the biggest barrier to his communication. It is funny how priorities have changed.

Little Bear’s speech was pretty much unintelligible at the start. Then we tuned in and as he didn’t have many words it didn’t take long for us to be able to translate. That was all well and good until his vocabulary sky rocketed and then we were back to having no idea what he was trying to say again.

Using mainly the modelling strategy we have targeted voiced/ voiceless confusion (“beas” for ‘peas’), articulation of ‘l’ (there was a little more than modelling involved in that one but not much), production of l clusters (pl, cl, sl, fl etc) and some random inconsistent/ storage errors e.g. “gog” for ‘dog’, “nogat” for ‘yoghurt’, “mu-ey” for ‘money’, “di” for ‘dummy’ etc. However, despite all that, at the start of SALT, Little Bear was still fairly unintelligible to the therapist at the age of 4 and a half. It transpired that his vowels were jumbled which was resulting in very unusual sounding speech – his teacher had even asked me if he was foreign.

At this point, although I am a SALT and had worked on lots of aspects of Little Bear’s communication myself, I was glad and relieved to have another therapist on board. Vowels are complex, they are in all words and I couldn’t really see the wood for the trees. I was pleased to have somebody to defer to for clinical decision making. She didn’t really know where to start either so after identifying which vowels were going wrong, we pretty much just plumped for one to have a go at. It was ‘eye’ as in pie, pipe, kite, nine, five etc (for non-SaLTs think about how they sound, not how they are spelled). It turned out that Little Bear could make this sound and he could say it correctly after a consonant e.g. pie but as soon as a consonant was added after it (pipe) the vowel distorted. In this example it became “pap”. Little Bear could hear the difference between pipe and pap which helped.

Once we had figured this out and done one session of therapy, Little Bear had cracked it and was spontaneously generalising the sound. We were both unprepared for it to be that quick. I was also surprised by how often that vowel crops up in English and therefore what a difference working on it made to his intelligibility.

We have since worked on ‘ow’ as in house, mouse, brown which were coming out as has, mas, bran. Little Bear acquired ‘ow’ in much the same way as ‘eye’. We then tried ‘err’ for no particular reason other than because it was another he couldn’t say but for some reason that one just isn’t coming so we have switched to ‘ay’ as in pay, plate, eight. Little Bear can say it in words but is not generalising it as yet. I am now getting a bit tangled up with which vowels I need to model for him!

The formal therapy is pretty good though it is not completely plain-sailing.

I had thought it would be helpful for me to keep in touch with the therapist via e-mail between appointments so I could keep her updated and take away the need for her to change her session plan on our arrival – this happens most weeks due to Little Bear’s unexpected/erratic rate of progress. However, apparently this would be against policy which seems odd to me. I frequently used to use e-mail to keep in touch with parents and think this is a missed opportunity.

Also, it turns out that Little Bear is now entitled to therapy in school because he has top-up funding. However as his speech requires specialist input from a therapist only, he has been deemed more appropriate for clinic therapy. I suggested that maybe the funding could be used to train school staff to work on his language targets alongside this. Apparently it cannot be done because the school team and the clinic team are separate and you cannot be on two lists at the same time. Whilst I get this, I can’t help feeling frustrated at the lack of flexibility and feeling a little like he’s missing out on his entitlement. A system with two rigid lists does not have children and their individual needs at the centre of it.

Either way, Little Bear continues to make fabulous progress and for that I am extremely thankful.

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Communication Difficulties: Update

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

Another try at SaLT

Regular readers will know that there has been a bit of a saga taking place over Little Bear’s Speech and Language Therapy (SaLT) input from our local NHS Trust. You can catch up with the tale here: A bit of a rant

The response to my ranty post was both unexpected and overwhelming. It had evidently hit a nerve, both with other parents who had experienced similar difficulties and with stalwarts of the SaLT profession. Afterwards I felt my only course of action was to make a second formal complaint to the Service Manager. I thought long and hard about doing so because I didn’t want to get labelled as one of those nightmare parents that nobody wants on their caseload and as a SaLT myself it’s kind of awkward. However, in the end, I felt I had a professional duty to maintain standards and I couldn’t stand by and allow that type of service to be provided to other children.

The Manager didn’t seem to mind and took on board all of my points. She didn’t think the service we had been provided with was acceptable either. I’m sure that raises a whole host of other questions but I won’t go there. The outcome for us was satisfactory as she agreed Little Bear needed to be seen for THERAPY not another review ASAP and she wisely gave me a choice of seeing one of the therapists we had already met or starting again with someone new. I chose the fresh sheet and acknowledged that though I am probably every therapist’s worst nightmare, if there was somebody out there with a bit of expertise that would probably suit us.

So today, both Bears and I found ourselves sitting in the waiting room again. Little Bear wasn’t having the best day and was finding waiting very challenging. He had already slithered underneath the seat in front and therefore under the lady that was sitting in it; started chanting “look he’s bald” at the top of his voice; wedged his feet between the chairs, dangerously close to a man’s bottom and was getting increasingly agitated by the minute. Thankfully we weren’t kept waiting long and pretty much as soon as the therapist came out for us I felt we would finally be ok. I knew this because I’m not sure she even said ‘hello’ to me as she was too busy speaking to Little Bear. He fell into step with her and went into the clinic room pretty confidently. She chatted with him about his t-shirt, admired his new shoes and listened when he told her he was 5 now; little things but important things that were sadly lacking previously.

The second thing she had done was anticipated that I would prefer to sit next to Little Bear at the assessment table not at the big desk. Again a small thing but I felt she had thought a little about what would work for us.

She started the session by openly acknowledging the rocky road that had brought us to this point. I would much prefer that she did this, rather than shying away from it. I felt it got us off to a better start. She said she had read back over the file and, reading between the lines, had not found the information she had hoped would be there. To make us both feel more confident in the process she suggested we start again. She would spend a couple of sessions getting to know Little Bear and assessing him and we would then draw up some suitable targets. This seemed a much better plan than following the targets that were previously written without any real understanding of Little Bear’s needs and is probably the plan that I would have come up with, had I been in her shoes.

The therapist then took some time to listen to me and my thoughts on Little Bear’s communication. She acknowledged the work that has already been done and never made me feel as though I was exaggerating.

Little Bear had pretty much taken the clinic room apart by now but she didn’t seem bothered and got down onto the floor to try to play and chat with him. It didn’t go brilliantly well but that was more down to Little Bear not playing ball than anything. She scored full marks with me for trying.

Next she tried some assessment at the table. The previous therapists hadn’t assessed his comprehension at all so I was pleased she was going to. With a bit of help from Big Bear and some imaginary gorilla glue, Little Bear kind of sat on his chair for the time he needed to. It was weird watching him doing an assessment that I’m so familiar with carrying out, especially as I knew how well he was/ wasn’t scoring. It was lovely to see how much progress he has made and how much he CAN understand now though. Towards the end I was a bit unsure whether he was pointing to the items correctly or not and the therapist explained how she was scoring it to me. That opened up the discussion a bit and I felt we were sort of speaking as two professionals when one of us would say “I’m a bit dubious about that one” and the other would agree.

I definitely need to try to have mainly my parent hat on when I’m in the sessions but there is no point pretending that I’m not a SaLT when I am and if she allows us to work together that would be a brilliant outcome. I felt like a little team with the staff at Little Bear’s preschool and I do now with the Reception staff and I think that if you can achieve that sort of working relationship the outcomes are generally much better for your child. I’m hoping that all is not lost and despite everything maybe we could manage it with SaLT too.

At the end of the session we got another appointment for next week when assessment will continue so it does look like we are finally having regular SaLT input.

When we came out, Big Bear said “she was a bit crazy wasn’t she Mum?”. I knew what he meant, she was a little, but a bit of eccentricity is no bad thing when it comes to managing the little dude. She didn’t seem in the slightest bit ruffled when he kept reaching over her to type on her computer or when he straddled her leg or when he told her a story about having his willy out! I’m quite optimistic…

After my ranty post I felt it was important to also record the positive experience we had this time. Yes we absolutely should stand up and speak out against poor standards but we should also celebrate the good and I’m very relieved to find it does still exist.

 

Another try at SaLT