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.

Advertisements
Communication Difficulties: Update

A bit of a rant

Beware lovely readers this post is going to get ranty. I apologise in advance because I pride myself on being a blogger with a positive outlook and can usually find something that I’m proud of/ happy about/ amused by that I can share, even when things get challenging. However, even if I dredge the silty bottom of today’s subject matter I cannot think of even one half positive to balance things out. So for one day only I’m just going to vent.

The thing is that our local Speech and Language Therapy (SaLT) Service is turning out to be completely and utterly useless and for the first time in my career I am embarrassed by association.

Little Bear was referred last February. As most of you will know he was experiencing developmental delay caused by neglect with more specific and significant speech and language difficulties on top. His communication difficulties impacted on every area of his life, from his learning to making friends to his behaviour. I felt he had a high requirement for therapy, not least because he had had such poor stimulation for the first 3 years of his life.

We were offered an initial assessment appointment on 4 separate occasions and each time the appointment was cancelled by the SaLT Service. Apparently the therapist had experienced a string of personal problems. I was empathetic, things happen, it can’t always be helped. It wouldn’t have happened where I used to work though: somebody else would have covered for the therapist after the first or second cancellation.

Eventually Little Bear was seen on our 5th attempt, after 8 months of waiting, back in October.

I don’t think I was ever going to particularly enjoy taking him to his appointment: I’ve been doing Speech Therapy my way for a long time and obviously you do things a certain way because you think that is the best way. I knew a different therapist would do things differently and I would need to sit on my hands and try to distance myself as best I could. I have worked with lots of other therapists though and I know that my way is pretty similar to most other people’s way and I would have been very happy for any of my colleagues to see Little Bear.

I wasn’t totally convinced that the differences I saw in how the therapist ran Little Bear’s initial assessment could be passed off as style differences but I gave her the benefit of the doubt. I noticed that she didn’t take any time to get to know Little Bear or build up any rapport with him. There wasn’t any chat about what he likes or how old he is or where he goes to school, she just spoke with me to do a case history then assessed him very clinically. His behaviour during the session was off the scale compared with what was typical for him at the time.

During the assessment she didn’t transcribe his speech, just making some basic notes. I concluded her memory must be a lot more detailed than mine. She didn’t ask me anything about his social communication or memory skills.

At the end of the initial assessment, the therapist concluded that Little Bear’s expressive language skills were pretty much in line with his age (??!) and that his needs were not that severe. She agreed to put him on the waiting list for therapy though and said an appointment might come through before Christmas if we were lucky. I somehow came away feeling like a neurotic parent who had completely exaggerated my child’s needs.

Little Bear had a huge meltdown on our arrival home and flatly refused to go to school afterwards. He has never done that before or since and I had to carry him there with his dummy and blanket.

Then we waited. And waited some more.

We recently received a letter inviting us for a “follow up” appointment. It was at 8:45 am on the Friday of half term. I certainly wouldn’t have chosen to get both boys out of the house earlier than on a typical school day during their holiday but beggars can’t be choosers. We’d waited a year by now, I was damned if I was going to try to change it.

We arrived 5 minutes early and checked in at Reception. “Do you know which therapist it is?” the receptionist enquired. I didn’t. “It’s just that there are 2 and one is currently stuck in traffic” she explained. I really hoped it wasn’t our one.

It was our one. We duly took a seat and waited. This could have gone either way and we were just lucky that Little Bear was able to tolerate a wait today. I think it helped him that Big Bear was there too.

Little Bear did try to tell me that he was nervous this morning though. Previously you could just spring things on him and he would either go with it or not, depending on what sort of day we were having. He is getting a lot more aware of what’s going on now though and he knew that the ‘talking lady’ would expect something from him. Although he wasn’t able to say “I’m nervous” or “I’m worried”, he tried his best to get the idea across to me without a meltdown. He said “I think I take Phoebe to see the talking lady and he sit on my knee”. Phoebe is his cuddly dog who barks and wags her tail. Ok, I said. “Why? Does Phoebe want to come?”. “Yes, cos it might be scary”. “Might it? I don’t think the talking lady is scary” I tried to reassure. “Yes” he said “speaking might be scary for Phoebe”. Aha. I think perhaps he knows his speech isn’t quite how it should be and he knew that it would be under the spotlight today. We decided that noisy Phoebe might be best left at home but he brought 3 cuddly puppies to sit on his knee because they are “more sensible”!

What a shame to make an anxious child with attention difficulties (who finds sitting still difficult at the best of times) wait in this manner. Why arrange an early appointment if you couldn’t be sure of being there? I was getting cross but again tried to be reasonable. It wasn’t her fault the traffic was bad.

Eventually, the other therapist who was there came out to us. She was starting her own clinic at 9:30am but could squeeze us in. Apparently her colleague lived a fair distance away and was never going to make it.

We walked into the clinic room to find another person in there. She was later introduced as a student though I was not asked to consent to her being there which I know is the standard procedure.

The lady who had stepped in was obviously trying to do us a favour but was clearly flustered and had not read the notes. She started reading them while I was there and began firing questions at me: “how are his vowels?” “Have they improved?” “What about his word retrieval difficulties? Are you still concerned about those?”. As she was using technical language I assumed she knew I was a SaLT. “What is he working on at the moment?” she asked. “Well, we have started doing some work on ‘pl’ and ‘bl’ sounds” I explained. “Why?” she demanded. “Err well, because he was reducing those clusters and it was affecting his intelligibility” I replied. “Oh” she said “seems odd, those sounds are very complicated”. “And because I’m a Speech and Language Therapist” I retorted before I’d really considered whether that was a wise thing to say. I did well and kept the swearing inside my head though.

She proceeded to attempt an assessment with Little Bear. She was clearly in a rush and didn’t bother with any rapport building either. I could have told her, had she asked me anything about his behaviour and how best to manage him, that sitting him next to a big stack of toys would impact negatively on his ability to concentrate.

Once the assessment was over, she said “yes, he does have some speech difficulties I’ll put him on the waiting list for a block of therapy. Is that ok?”. Well no, after a year of waiting and thinking that therapy was starting today, no, that isn’t really ok. On querying whether today was meant to be the start of input, she explained that they have a lot of children waiting and some for quite lengthy periods so they are just seeing everyone to “check in” so “everybody has had something”. I can only think that that terrible piece of clinical decision making is due to having to meet some sort of waiting time target. It makes literally no sense because we still haven’t had anything. We haven’t had one piece of advice or even a strategy to use. Time is being wasted reviewing everyone who is waiting and doing NOTHING with them when they could have used that time more productively to start several children’s therapy. Although assessment is essential from a clinician’s point of view, on its own it does nothing to improve outcomes for children.

The whole experience was painful. We were very quickly dismissed, with minimal attention paid to Little Bear. I think it is just common courtesy to praise a child and let them know that they co-operated well at the end of a session.

I have been quite unsure about writing this post as it feels so wrong criticising fellow professionals. However, the whole experience to date has made me feel like an old person who says “it wasn’t like this in my day” as if things have changed beyond recognition over the past 50 years or so. Yet I am not elderly and I only left the NHS last year. Nevertheless I do not recognise this as the Speech and Language Therapy that I know. Where is the quality? The bit where you care about the children and families you are trying to help? The bit where you are thorough and try to consider all aspects of a child? The bit where you look beyond the snapshot provided by one rushed assessment? The bit where you think about a child’s background and the impact that their communication difficulties are having on their life? The bit where you don’t keep patients waiting, where you manage your diary in a realistic way and you prioritise the children who need you most?

If this is what people’s experience of SaLT is, I’m not surprised that nobody really knows the breadth of what we do and that as a profession we have a bit of an image crisis. I am ashamed to be associated with the type of service that has been provided to us. I know that each individual failure in our case has had a fairly reasonable personal excuse behind it but overall the quality of the service Little Bear has experienced is not excusable.

We have experienced the Audiology Service, Educational Psychology, School, Health Visiting and other medical professionals and I have felt well supported by them all. It does upset me that it is SaLT in particular that is letting us down.

And so we wait again.

 

*Rant over. I promise some positive sentiments next week.

 

A bit of a rant

My 1 Year Blogversary

As with a lot of things I’ve done over the past year I started blogging entirely by accident. I wasn’t particularly active on any social media channels and although I was already an adopter, I had never thought of seeking support online. I had absolutely no idea that there was such an established and friendly community of adopters and fosterers on Twitter. I would probably have thought if I’d have considered it, that it would be difficult to get to know people and it would be full of trolling. I’m suspicious minded like that.

One day, just over a year ago, an e-mail appeared in my inbox offering an opportunity for adopters to become Social Media Champions. You could attend a training session and they would help you to start a blog etc. Having never harboured any desires to blog, the next thing I knew I was replying.

A few days later I got another e-mail saying there had been quite a bit of interest and unfortunately there were not enough spaces for everybody to attend. I had not been successful in getting a place. I was surprisingly disappointed: perhaps I really did want to be a blogger after all?

Not one to take no for an answer I decided to see if I could figure it out for myself. After a few mind-boggling evenings of googling and trying to decipher technical jargon, somehow Adoption: The Bear Facts was born. Since then I have written and posted in my blog every week and I absolutely love it.

One year in I still don’t think I’m a very technologically savvy blogger. My site is fairly basic and I don’t own my own domain. I probably don’t know about half the possible functions of my platform. I have managed to acquire a small group of followers and the lovely people of Twitter are always very kind with their liking and re-tweeting. I have taken some ginger forays into linkys but there is certainly more that I could do to improve my reach.

The thing is that the bit I really love is the writing. I think I’m a little bit addicted to it. Even on the few occasions when I have been organised enough to prepare a couple of posts in advance and I don’t actually need to write anything, I find myself still wanting to. If I can’t fall asleep my brain starts to “write” things. I have mentally written whole posts at 4am before then had to commit them to paper in the morning before I have forgotten them.

I find the writing very therapeutic. I think what it has done for me is allowed me to step outside of our adoption and family life in a virtual way. It helps me to inspect our dynamics and consider any difficulties from afar without actually leaving the house. It has metaphorically turned our lives into a small ball that I can hold out in my hand, in my mind’s eye, and inspect from any angle. When something happens that worries me or needs unpicking in some way, my first reaction now is to write about it. In doing so, I’m usually able to sort out my position and become clear in what should or should not be done.

It also turns out that I’m much better at expressing myself on paper than I am verbally. I am a talker but I feel more comfortable being really honest and talking about my feelings (especially if I’ve been upset) through my writing. I’m probably quite introverted really. I definitely prefer to solve my own problems, rather than letting others help me, which is something our Social Worker highlighted during our assessment. It wasn’t something I knew about myself prior to that as I do like chatting with people and would consider myself quite open. However, she observed that I tend to take more of a listening role and if I have a worry or concern, tend to keep that more to myself. She had some concerns that if I encountered difficulties once we had adopted I might not ask for help: a potential risk factor in any adoption.

Now that I’m aware of it I have to make conscious decisions to draft in a bit of help when I need to. My default is still to have a good analyse by myself though and that is where the blog comes in. I think it has allowed my family and friends a way of knowing how things are going and how we are feeling without me necessarily needing to actually tell them, which is of benefit to all of us. In sharing our ups and downs I often find out that somebody else has been through something similar and that is reassuring too. Many of us adopters are in the same boat.

I have always been a bit of a chronicler: I still have all my cringe-inducing hand-penned teenage diaries; but I’ve never written so others can read it. I like the fact that through my blog I’m building up a huge memory bank of the boy’s childhoods whilst hopefully, at the same time, raising awareness of issues that I consider important. I don’t think there are that many personal accounts of adoption out there, not in book form anyway. There are quite a few of us bloggers about now but as everybody’s experience of adoption is different, the more the merrier. It can only be a good thing to have enough writers out there to build up a really representative range of stories. I try to share ours with a positive voice.

Another issue close to my heart is speech and language difficulties; something that I feel continues to be poorly understood. As a Speech and Language Therapist and Mum to Little Bear who has Developmental Language Disorder, it is something that features quite often in my blog.

Did you know that over 1 million children in the UK meet the criteria for Developmental Language Disorder? Most people haven’t even heard of the diagnosis. In contrast, almost everyone has heard of Autism despite there only being about 700,000 children in the UK who meet that diagnosis. Developmental Language Disorder continues to be poorly understood, missed and misdiagnosed. It is extremely common in children labelled as having “behavioural difficulties” and amongst those who find themselves within the Youth Justice System.

For me, helping Little Bear to navigate school whilst he’s not able to tell me anything about what has happened when things have gone wrong for him, has made the need to raise awareness even more pressing. There have been occasions recently where I have felt he has been wrongly blamed for things because other children are more articulate than he is and he is not able to defend himself verbally. Thankfully his class teacher mostly understands his difficulties but other staff, such as dinner ladies do not and do not take his communication levels into consideration when investigating what has happened.

A well respected Professor in the field of Speech and Language Therapy, Dorothy Bishop (@deevybee) is currently raising funds to make an awareness raising film about Developmental Language Disorder. If you want to contribute or find out more about the project you can follow this link: Raising awareness of DLD

The only down side to blogging is that because I love the writing so much, I can sometimes get a bit lost in it. Sometimes I get my writing done but not my washing! It has also caused me to get ideas about writing becoming more than a hobby… You never know, I’ll have to see what the next year brings.

All that remains is to say a huge thank you to everyone who has taken the time to read or share or comment on any of my posts and especially those of you who read every single week. THANK YOU! I really do appreciate it and it stops me feeling like a little whisper in the wilderness.

 

My 1 Year Blogversary