The Building Work is Finished!

Here’s the thing: I can’t think about sensible, important things all the time. It’s tiring. I don’t watch the News because it’s frankly terrifying, though these days you can’t really escape international acts of terror or crazy world leaders or snap elections even if you try. I usually focus my brain space on important things happening closer to home: my family, the children’s education, any adoption-related issues we are having etc. But even then it can be hard work analysing and cogitating and wondering all the time. If I’m honest, and at the risk of sounding shallow, sometimes I just want to think about making things look nice…

I love colour and pattern and genuinely believe that if I wear things and surround myself with things that I enjoy the look of, I will feel happier. It’s not a vanity thing; it’s a creativity thing I think, especially as I’m not bothered what other people think of my choices. As long as me and the other Bears like it we’re all good. I think that thinking of outfits and decorating choices is probably actually a form of self-care for me.

This week has been a bit topsy-turvy as everyone has been feeling poorly and my brain just fancies a bit of making-things-look-nice self-care, so what better time to share the pictures of our FINALLY completed building work?

We have been working on the house pretty much constantly since last summer. You can read about the first phase of building, when we cut a bit off our L-shaped living room and knocked the kitchen wall down to make an open plan family room here: July at Adoption: The Bear Facts. This work left us with a brilliant family friendly living/ dining/ kitchen space at the back of the house. It also left us with a weird miniscule room at the front of the house that wasn’t in any way practical or useable. It was mainly used for storing bits of furniture and tons of boxes of books. We applied for planning permission to extend out the front of the house to fill in the space between the tiny front room and our porch which used to jut further out.

Building work on the second phase started in October/November and has really only just been fully completed. Although the work to make the family room was more major and affected our living areas more, it only took 6 weeks from the beginning to being completely done and it was fairly stress free. The second phase has in comparison felt like it has taken FOREVER and been a marathon. Towards the end of the project, I was feeling quite stressed and wrote about it in Juggling. It is therefore a massive relief that we are done.

For those of you out there who also love looking at stuff here is what it looks like now:

The tiny front room has become a second living room and office area. All the books are out of their boxes and happily residing on shelves. I am VERY excited that I now have an ‘office’ (what I actually mean by that is ‘a place to keep my extensive stationery collection’!). I also love having more shelves that I can display my collections on and fiddle with and make look nice. So far I have mainly only managed to LOOK at my office and definitely need more time to be in it, working.

As part of the work we also decided to fill in our open porch. This has made our hall bigger and meant we had to re-decorate it. I was pleased about that because we could finally get rid of the tester patches I had painted all over the place in a fit of foolhardiness several years ago. Everywhere is now quite grey but is very much brightened up by our new mustard front door.

We used the space from the porch to create a cupboard. That sounds ridiculously dull but it has changed my life because we no longer walk straight into a wall draped with hundreds of coats and there is no need for shoes to be scattered ALL over the house. I did also paint the cupboard fuchsia pink and put yellow hooks up so it is a very happy cupboard.

 The last few weeks have involved a huge spring clean and sort out while we have been trying to move everything back around the house again from the places we had been temporarily storing it in. I am still striving for whole-house order and tidiness but I’m not sure it will ever be achieved in a house full of boys. Apart from that, there is one last job to be done. We need a new carpet for the stairs… Obviously I have set my heart on a bright patterned one to lift the grey walls and it sadly doesn’t seem to exist. Well, it does, in the form of the most expensive carpet in the shop that unfortunately does not have any redeeming features such as being impervious to dirt. If anyone knows where to get a manmade pink spotty carpet that will not break the bank I will love you forever*.

 

 

*By the way I totally realise that this is a “first world problem” and that there are far more important things that I should probably be concerning myself with, but it would look fabulous.

 

 

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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 5^th to 75^th percentiles. For those not familiar with percentiles, a score at the 5^th 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 75^th 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 1^st 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 10^th percentile (below average) and his verbal score to be around the 38^th (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.

 

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.