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

November at Adoption: The Bear Facts

It feels like literally 3 seconds since I was sitting here writing last month’s round up but here I am again and November is over. Here are our best bits:

Events:

  • Half term took place in the first week of November for us. In order to curb Big Bear’s growing I Pad addiction and to encourage him to spend time doing other things, we started the holiday by limiting I Pad time to 30 minutes per day. I was also strict about TV time. It was allowed but I didn’t want the I Pad just to be replaced by another screen. It was the best thing we could have possibly done and I truly believe it led to a much calmer and more wholesome holiday. In fact, the half hour limit is now a permanent feature at our house (mean Mum!).
  • I spent the first couple of days on my own with the Bears. Day 1 was fairly disastrous (I can see a pattern forming, the first day always seem to be a disaster) but day 2 was lovely. We went to the shops, had a wander around, bought new shoes (how had their feet possibly grown again??) and went to the Library where we got involved with a craft session that happened to be on. I have been trying to engage Little Bear with the Library for a while now. It has been a bit of an uphill battle but I was really pleased on the day in question because he took time (seconds, but still) to choose his own books for the first time and then concentrated really well for the craft. Both boys made a rocket which I’m still proudly displaying on my shelf.
  • I treated Little Bear to a comic and Big Bear to some Match Attax then we got a hot chocolate and some toast. I felt as though they actually wanted to do that and we weren’t just sitting down because I was tired and needed caffeine! We sat for a quite a while and Little Bear coloured in his comic and Big Bear looked at his cards and we seemed like a civilised family!!!
  • That afternoon we went to the cinema to see The Trolls which we all enjoyed. We happened to bump into some friends there and spontaneously went to the nearby soft play area with them to burn off some steam. It was a really lovely day.
  • Grizzly was off for the second half of the week and we went to a couple of parties. I also baked twice with the boys that week. Previously I have had double of everything so that they could have all their own stuff and there would be no arguing over whether it was fair or not. This time I chanced it with one set of equipment and ingredients and took turns to give them little tasks to do. I was really impressed with how they coped with it and what a calm experience it was.
  • We went away for the final weekend of half term as a surprise for my Mum’s 70th birthday. The boys put lots of effort into making her cards and cake and we had a really good family weekend. Little Bear was a little anxious on the journey because the plan was quite complicated (we were going somewhere else on route and though we were meeting my Mum it wasn’t at her house) and he needed lots of repetition but he settled really well once we there.

 

  • Big Bear played in his first football match. After saying that he wasn’t headed for the Premier League (Bad Mum!) I couldn’t believe how well he played! He showed a real grit and determination on the pitch that I don’t think I’ve seen in him before. It was brilliant to watch and then I nearly wept all over the mud as they made him man of the match! Little Bear coped fairly well with having to watch and was very proud of his brother. We have avoided taking him to watch again though as I think behaving yourself on the side of a cold pitch for an hour is quite a big ask and there are probably better ways we can spend the time.

 

  • When the last match was on, Little Bear and I went to pick up Aunty Giraffe for a visit. It was lovely to see her as always. Little Bear is very fond of her and the fact he hasn’t seen her for a few months in between visits doesn’t seem to matter.
  • We did family things over the weekend then on the Monday Aunty Giraffe and I escaped for a spot of shopping. Grizzly ended up being at home and was able to pick up the boys. Very selfishly, I was really excited to be out past school pick-up time and shopping turned into the cinema (to see a grown up film!!!) and dinner. Very decadent but ace.

 

  • Last weekend we attended our VAA’s Christmas Party. I bumped into quite a few familiar faces: a family whose prep group I had spoken at and who now have a tiny baby in their charge through concurrency; some adopters who had attended one of my Communication Workshops and now have 2 little girls; a couple from our prep groups and their little girl. It was lovely to see everyone, especially to meet the couple from our prep groups again, in the same building where we first met, now with our little people in tow. I also met a not so familiar face: one of my Twitter friends. It’s quite surreal to meet somebody you know so much about and so little about at the same time but also lovely. Finally, our Social Worker had tasked us with finding another couple who didn’t know anybody. We did find each other and I think we have quite a bit in common (I suspect our SW knew that) so we are going to have coffee soon. Phew! My adoption network seems to be growing quite rapidly!

 

School:

School has largely continued to go well for Little Bear. There have been some incidents but I’m going to count them as positives as I’m really pleased with how school have handled them. All the incidents have taken place at lunch times when there is less supervision and the supervision comes from mid-day assistants, not teaching staff. The incidents usually involve Little Bear playing a game that he shouldn’t be e.g. fighting and the game usually ends in him kicking/ hitting/ biting somebody. From what I can tell, all hell usually breaks out at that point, a dinner lady shouts at him that’s he naughty and drags him to a teacher. Little Bear is unable to explain what has happened or why and he gets punished, not the other child who is usually also involved.

That sounds pretty bad but I spoke with his teacher about it as soon as I spotted the pattern and she had separately spotted it too. She had already spoken to the Head and SENCO to say that she didn’t think the usual system of giving a red card and getting a good talking to from the Head was appropriate for Little Bear. She had concluded that the supervision wasn’t appropriate and that the mid-day assistants needed more support in managing his behaviour in a more constructive way. She asked for my permission to meet with them and explain Little Bear’s needs to them in more detail. She would give them strategies that work in the classroom e.g. thinking time and if they didn’t feel sure about what to do, they could bring Little Bear to her and she would manage the situation. She confirmed that his behaviour is good in the classroom and it is just a matter of handling him more constructively. I did suggest he needed to be watched more closely too because if the opportunity is there, he will get into mischief. I usually ensure the opportunity isn’t there.

His teacher also said “he is not a naughty boy, he just needs more help with boundaries and knowing what is acceptable. I will not have him branded as a naughty child”. That was what I was planning to say but clearly I was preaching to the converted. So yes, there have been a couple of bumps in the road but top marks to school for their sensitive and child-centred handling of it.

There is now a protocol in place for the mid-day staff and so far there haven’t been any further mishaps…

In terms of his educational targets, Little Bear continues to make progress. He is secure in his knowledge of Phase 2 phonics so is now learning Phase 3 and working on blending Phase 2 in school. The blending is proving difficult, as I suspected it would, due to Little Bear’s speech processing and auditory memory difficulties. However, he is mostly able to identify the first and last sounds in words so I don’t think he’s as far off blending as I did a few weeks ago.

Now that he has found out what numbers come after 10, he’s got a bit muddled with seven and eleven and the whole sequence has gone a little wonky again… I’m sure we’ll get there eventually!

Little Bear has discovered pens and has even requested paper a few times recently. He is making some good first attempts at mark making now.

I am super proud of how he is getting on as always.

Me, Myself & I:

I have mainly been making Christmas decorations (our first craft fayre is tomorrow), cups of tea for builders and doing Christmas shopping. I have run another Communication Workshop which went well but we are now on a mission to improve marketing and hopefully get more people next time.

Snapshots:

  • Little Bear asking me to put the radio on then the two of us holding hands and dancing around the kitchen
  • Little Bear showing great empathy with his friend who was crying and trying to find ways to cheer him up
  • Little Bear going back into his classroom each evening when I pick him up, trying to share his treat with his classmates. It’s all good when it’s a packet of sweets, not so much when it’s a giant cookie that several children take a bite out of!

Big Bear’s mini projects:

We have made quite a lot of decorations for our tree now, with some help from Little Bear and I for one can’t wait to get a tree now. Here is a little selection of some of the different things we have made:

img_5675

 

Project Home Improvements:

The builders are in! Well, in fact, they are out. They are building the outside parts of the little extension we are having at the moment and they are going to wait until the New Year to knock through. Thank goodness! So far, it’s fairly painless and they are nice guys so apart from making a few decisions about where windows need to go etc. and making hundreds of cups of tea, it hasn’t really caused me any stress. It means I can do my favourite bit which is picking paint colours etc. Hopefully by the end of January I might be able to show you.

 

 

November at Adoption: The Bear Facts

Speech & Language & School

Although Little Bear is making progress with his speech and language skills all the time, I continue to have concerns about this area of his development. I think him being in school has made some things more noticeable. The fact that he is now away from me for long periods of time, in which I have no idea what he has been up to, sometimes leads to difficulties. I know a lot of children don’t like talking about their school day but I think Little Bear is often keen to share the things he has been up to but unfortunately he frequently still doesn’t have the language skills to be able to. I have to rely on things like the Facebook updates his class teacher posts or things other parents mention. If I have a starting point, Little Bear can then usually tell me something.

There are things that happen that he just can’t explain e.g. when he injured his eye at school requiring a trip to hospital, he couldn’t tell us how the injury had come about or why his eyelid was bleeding. We had to rely on another child’s account to get to the bottom of it.

There continue to be situations when I can’t understand what he’s trying to say to me and strangers certainly struggle. Thankfully his teachers seemed to have tuned in pretty quickly but I think there have been some communication breakdowns with his peers. They seem to be going through that phase where they tell each other that they can’t play or they won’t be inviting you to their party. It’s typical 4 year old stuff but Little Bear is at a disadvantage because he struggles to negotiate verbally. Where others might argue back or try to be persuasive, Little Bear has already used up his best attempt at joining in by saying “can I play?” If he is then rebuffed, his hurt feelings and lack of any other options still lead to a physical response now and again.

Little Bear is good at persevering when we don’t understand him now but he understandably gets frustrated when he has tried and tried and still can’t get us to. Sometimes his attempts at words are nothing like the target word so it can take a long time (even several days) to figure out what he means e.g. we finally worked out that “boarbuh” is actually ‘Paw Patrol’. He struggles to imitate words accurately so even though we have been tapping out the syllables for him and modelling each bit clearly, he can’t copy them in any recognisable way. Equally I used the word ‘soggy’ to describe a wet cardboard box. Little Bear already knew ‘foggy’ and now thinks that is both weather and a wet cardboard box. I just can’t get him to hear or mark the difference.

This morning I said to him “I’m not sure about swimming today, you sound quite husky”. Little Bear then said to his Dad “I can’t go swimming, I’m too whisky”.

There is definitely something going awry with his speech processing system. This system helps you to analyse the words that you hear, figure out what sounds they have in them, in what order, how many syllables etc. Your brain should then store the word accurately and send instructions to your mouth muscles of what sounds you need and how to make them whenever you want to say the word. Things can go wrong at any point in that process and I suspect there might be more than one problem with Little Bear’s speech processing.

However, all the phonics work that is happening at school is brilliant and will help with his speech development too. He has continued to surpass expectations by learning all the letter shapes/ sound correspondences in phase 2 phonics in the first half term. At school and home we are both focussing on helping him to hear and identify the first sound in words e.g. sun starts with s. This will be essential because it is all well and good knowing the letter shapes but he will not be able to read if he cannot break words down into their individual sounds and then stick those sounds together to make words. At the moment if you try to get him to blend sounds, he just can’t. You might say “c-a-t” and he’ll say “banana”. Blending is a very difficult skill so we will aim for identifying first sounds to start with and go from there.

We have made progress with the auditory memory side of things too and Little Bear is finally able to count! He can get to 5 reliably and to 10 with a little bit of prompting. The best thing about it has been his motivation to keep trying and his determination to succeed with it. He has a very similar attitude to learning his phonics.

When he first started bringing books home to read I got a little concerned. Obviously he is not expected to read words yet so he brings the picture books where you are meant to talk about what’s happening in the pictures. To begin with it was a disaster as he just didn’t get the concept of describing what he saw. I honestly felt it would have been easier to teach him to sight read a word. However, we persevered. I would get him to tell me whatever he could, usually just one word. I would then put that word into a sentence and model it for him. I used questions such as ‘who’ ‘what’s happening’ and ‘where’ to help him give the key information, then I could formulate the sentence for him e.g. Me: “who’s in the picture?” LB: pig Me: “Yeah, what’s the pig doing?” LB: “jumping” Me: “He is jumping. Where is he?” LB: “bed” Me: “Good, the pig is jumping on the bed”.

We continued like that, painfully, page by page, for some time. I assume that’s what happened when he read to his teacher too. He has done brilliantly though and now attempts a sentence for most pages most of the time. There might be some little words missing but he makes a good attempt.

I really noticed his progress when he had his first NHS Speech and Language Therapy appointment last week. The therapist assessed him using a picture description task. When he started giving answers such as “the man is riding a horse and the horse is jumping over the fence” I knew she probably wouldn’t be as concerned about him as I felt she should be or as she would have been had he been seen sooner.

Unfortunately it has taken 8 months and them cancelling 4 appointments for us to finally get an assessment. I didn’t find it a particularly fun experience, mainly because I wanted to be able to attend the sessions with my parent hat on, not my Speech and Language Therapist hat but when I walked in the first thing she said was “so you’re a Speech and Language Therapist I believe?”. Someone had helpfully written it on the referral form… Little Bear was also having some sort of regressive behaviour moment and suffice it to say that it was stressful to manage him with a professional looking on.

Either way, he is now in the system and will be attending for regular therapy soon. I’m not loving the idea of having to take him out of school for it and I don’t think he is either, judging by the size of the meltdown that took place when I tried to get him back to school after the first appointment. However, I know that school will carry out any programmes given to them and we have been talking about his Pupil Premium funding and whether any of that could be used to provide speech and language input that is more integrated with his education.

We are continuing to scale the word mountain that I talked about in Living with Speech and Language Difficulties. We are getting there, word by word, syllable by syllable. I don’t think the pinnacle is in sight yet but we continue to climb and that is the best we can ask.

 

 

 

 

Speech & Language & School