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?

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Developmental Language Disorder

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.

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

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

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