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Wednesday, 25 June 2014

With the right support...

I have returned from the annual statement review in tears - not because it was so awful but quite the opposite. They can see her doing really well and she is nearly at average levels for her language understanding.

Expressive language is still an obvious difficulty and she doesn't understand everything but to have come so far in such a short time is enormous, and much of her vocabulary understanding comes from books. Her reading has unlocked a door to understanding and expression.

This is huge for me, to finally have some light at the end of the tunnel, however I'm not going to say it's all over and she's cured because that is not the truth.

It's the right support that matters and it saddens me that children don't get the support, don't have the help and end up struggling through life, illiterate and locked in a world they don't understand. It is still a large lack of awareness that needs to be tackled, even before you can find the support.

I wrote an article for the fabulous Speechbloguk which you can read here, about the struggle to get the speech and language therapy and support. It's brilliant that all the professionals involved pulled together to get her the right support in the end but this could have been done and dusted from age 2 if there was more awareness and focus on speech and language therapy. It absolutely worries me that there are so many children out there not getting the support because it should be a basic human right to be treated equally, which in our society means the same as anyone else who has a medical need. Saying that I'm blown away by the wonderful SLT support we've had and how well they've done at school with her.

Next on the agenda is to tackle the behaviour issues that come with frustration and acting out. To be honest we've had a few meltdowns that last for a long time and a lot of it is due to being socially unable to join in equally, so she acts out to get her own way.

Positive behaviour rewards.
I am a convert to positive behaviour reward charts. After many years of not having enough discipline in myself to keep them up for too long, they work like a charm on my daughter. If you have a child with special needs it's often the behaviour that causes most stress, but if you start to lay down discipline that is often a hugely negative effect. The problem with too much discipline is that my child would thrive on the negative attention and act out even more. So to turn to those positive behaviour reward charts might seem a hippy response to 'bad' behaviour but a really really effective one!
I have started a new one -  'independence' reward chart, to encourage her acting her age (of nearly 9) instead of regressing to toddler like behaviour. This seems to have worked wonders so next month I think we will tackle joining in and sharing!! I wonder how we will get on!  :-0

Wednesday, 28 May 2014

Non-Verbal Communication - the experts

A positive note that has occurred to me whilst writing this blog, as a parent if we learn to use more visual language and understand non-verbal communication, it will open up a whole new level of communication for you with everyone not just your child. After all it has often been quoted that communication is mainly non-verbal and children with language problems are often expert in that!

Some ideas for non-verbal communication :

Visuals - children with language disorders are often more visually literate, so pictures, drawings and visual stimulus are a great start.

An exercise to try : Info gap....
In ESOL classes we often use this as an exercise to encourage communication. Have a picture that one person can't see - you describe it and the other person draws it. Have to use 'left/right' 'above/below' and colours, as well as describing the picture itself. This can be lots of fun but keep the picture simple!

Splingo! app builds key words memory and following instructions by building a rocket with objects after completing key word instructions. Splingo description/ Apps are a great way to let a child follow their own path when learning.

Gestures - drama is a great way to try out non-verbal communication. Drama teachers often use 'tableau' or 'freeze frames' to tell a story or make a group picture. This can be used alongside 'musical statues' or simple 'charades' to include children with language difficulties in groups.

An example game from 'In the manner of the word' - everyone in the group trying out an action, the group leader or a child within the group shouts a present continuous verb e.g. 'swimming' and everyone acts out that word - can reinforce some words that get mixed up.

I'm currently looking at other ways of learning language, as an ESOL (English as a Second Language) teacher I often used drama techniques in teaching adults as many of my students had very low levels of literacy. This is a great way of attracting children as it's fun and inclusive. I'm going to look at learning through stories in my storytelling work and post some more on what drama and story exercises might be useful.

Tuesday, 20 May 2014

Additional Parenting

I was talking yesterday about what the difference might be between a parent/carer and a parent whose child hasn't any particular additional needs.

There are people out there who are parent/carers to children with severe disabilities of mobility and neurology, which I can't begin to imagine and they are tired and stressed and completely put upon and I pray they are getting enough support. Up all night, administering to medical and continence needs, those parents are doing an amazing and really hard job. I'm not that. I don't have it that hard, I am supremely lucky that my child has SLI and nothing more severe. A lot of children with SLI might have chromosonal conditions that affect them. We have some behaviour issues but no physical or mobility constraints and as I say, we are supremely lucky to have such an able and character-ful person in our lives. But that doesn't mean that SLI doesn't affect all areas of her life, because it does.

There are other parent/carers who are probably a bit like me, that have fought for sen or support and have a generally managed time as long as support and basic needs are met, routines are in place and you can find some flexible work for yourself (which is not easy and the main reason why I have decided to stick to working for myself for the time being.) You're unlikely to rule the world like you thought you would, as you have the extras to deal with. It is hard work still, and in a way that even we don't realise sometimes.

To explain - for some parent/carers it might be dealing with social anxiety, with a child who can't cope with plans changing or putting on socks. Sensory disorders/sensitivity. Routines. For me it encompasses being a full time teacher, carer, advocate and translator, which is something you don't realise you're doing until other people start meeting your child and you find yourself repeating their sentences.  It is sometimes about having to detach the parent's head and add on a carer's head. It's not full on, it's middling tasks but important ones and ones which aren't covered by anyone else if you don't work at it.

I've thought of the times I have to detach and do the extras....

Trying to explain the difference between 'it not suitable you' and 'it doesn't suit you' whilst both are being aimed at your dress.

Knowing that 'custard' might actually mean 'gravy'. Both are in the same word category of 'sauce' but it's necessary to remodel 'I had chicken with custard' to gravy, just in case she asks for it when I'm not there, and gets actual custard on her chicken one day. (Repeat it three times and picture the colour, gravy, gravy, gravy)

Understanding that they aren't going to be as independent of you in the same way that a child who is able to operate in mainstream are. But that doesn't mean you don't have to try to help them to be. Empowering

Patience. Endless, endless patience. And repetition. And patience.

Being assertive not aggressive with SENCOs, LAs, SLTs and any other abbreviation you can think of.

And many more!

Does this ring a bell with other parent/carers?  What are your added extras?

Monday, 19 May 2014

The Good News

I've said a lot so far about the difficulties encountered by children/people with SLI and how tricky it is to get it recognised and supported. There is another side to this of course, in my experience of the amazing achievements that you can see.

My daughter has gone from being a pre-reader at P8 in year 2 (aged 5/6) to a near average level of 3c in year 4 (age 8). This is at double the rate a child would normally learn to read at because she has had lots of support and been given speech and language therapy. The reading has unlocked so much for her and it is a really remarkable progression.

Someone told me the other day that we need our children to see themselves as superheroes. And she really is - a superhero and a little star who can defeat the obstacles to claim her place in the world. She made a comic strip called 'The Little Star' who wanted a hero because she had lost her light and Tom the cow who no-one believed could be a superhero but found the light and brought it back to the Star. It seems her inner world of stories is more in personal psychology than you can imagine!

So despite the fights for understanding and the on-going need to keep tabs on what's happening, (because it doesn't happen without an intervention), she is really her own superhero. And that is true for all children, and we just need to keep reminding them of that and the people around them of what they are truly capable of.

Tuesday, 13 May 2014

Noticing the signs...and the singing

I was interested to read an article recently about how singing can help babies development, but also slightly annoyed because we all knew that anyway. It got me thinking about how my experience was so different though, and how these generalised articles on language development can put the blame on a parent's doorstep if your child's language is delayed. It feels terribly unfair when you are a parent who, like most, works so hard at being a parent. I can report that I did sing to my child, pretty much constantly, as I did with my eldest daughter who has no language delay. I also read stories, talked constantly and did not sit her in front of the tv 24/7. She has a differently wired brain which has garbled the language and memory route and leaves her like a beginner in French class, cluelessly smiling at what you are saying and replying 'bonjour' or 'ou est le chat?' for misunderstood questions.

And so what were the signs? Not singing songs back was one of them. Whilst my eldest daughter would want a story repeated over and over, my youngest wouldn't repeat words or phrases back, however she would spend a long time with visual and sensory pleasures such as food (think Close Encounters of the Third Kind with mashed potato) and drawing. Her art work is very good and she can draw a picture to tell a thousand words.

So I thought I would flag up some of the signs I noticed as a baby that point more to a language disorder and SLI than to other problems. SLI is specific language disorder - specifically language - so her physical and mental development was perfectly normal if not advanced, up until the age of 1 1/2 - 2 years old. She responded early to smiling, soft toys, settled herself well (she was a master at getting herself to sleep) and started crawling and walking very early. When the time came to repeat words though I noticed she didn't seem to be as quick to develop. Of course you don't want to (and shouldn't) jump to conclusions. My eldest daughter was singing Old Macdonald's Farm at about one and was hilarious in supermarkets by singing at the top of her voice in her buggy. I'm picking up Rice Krispies, she's full soprano "wak wak ere anna wak wak der...." she loved to sing! My youngest didn't do this. She worked out her puzzles quickly, she ate well and her motor control was brilliant (especially when feeding herself!) but she didn't seem to repeat words in the same way. I remember her first sounds were similar, but words were more difficult. When she pointed at the fridge magnet of Tigger and Pooh, she would say something that didn't sound at all like 'tigger'. So I would repeat it, but instead of repeating at Tigger, she pointed to Eeyore and said 'gg'. I didn't jump to conclusions, and no-one should, but at her 2 year development check I started asking questions.

Her behaviour had become quite manic and she would run around a room in a place she wasn't familiar with, it was different to others, and you couldn't calm her down with words and soothing talk. At the development check her language development came out at 15 months whilst her social and physical development was at 4 years old. There was a delay with her language there was no doubt, however she didn't display common signs of autism spectrum disorder such as not giving eye contact, social problems and understanding facial expression. I must at this point put a disclaimer - I am not suggesting that another child is or isn't on the spectrum, I am not even suggesting that at some point a different professional might give my child a diagnosis of an atypical type of autism because it is a huge spectrum and I am not a specialist. I am just saying that in order to treat my child's additional needs we had to focus on her language needs, early intervention and essential speech and language therapy. She doesn't have ADD/ADHD, sensory needs or severe behavioural problems. She does have low level anxiety and frustration. She doesn't do things repetitively, taken everything literally or need strict routines. She does like to know where she is sleeping and where she is going, because her concepts of time are so erratic.

As parents we always have to have one eye on the development and one eye on the child. My child did not develop in the same way. At playgroup she would run around and find large crowds stressful, mainly because they were talking to her and she didn't understand. It really started to flag up at 3, but at that point the Speech and Language team discharged her 'because it was too soon to know'. I can't tell to this day if the policy was well meaning or if I was being fobbed off, but it took a couple more years of struggling before I took her to a private speech and language therapist and found out she had a moderately severe language disorder. Armed with some evidence I proceeded to bash it over the heads of anyone that would listen and she was finally officially diagnosed around the age of 5.

There is support out there but it's so hard to get sometimes and with a diagnosis like SLI, which is still largely unknown, it can feel like an uphill struggle trying to get people to understand what's going on.

When she got the right support for her speech and language and was given positive rewards, her behaviour changed. Her anxiety levels went down and she could cope with those environments but before that it was so incredibly difficult. We were lucky. We got a statement of special needs and we had supportive schools. We were lucky because her impairment is specific so in a lot of ways she can negotiate life, just as if it's in a foreign language. We were lucky because she is healthy and happy and has the ability to learn. But I know if I don't keep vigilant and get the right balance of support to independence it's going to be a struggle and I have empathy for all the children and parents out there who are struggling from day to day, or who don't know why their child is behaving in the way they are.

So back to singing. For my daughter 'Old Macdonald's Farm' wasn't an option - she could do the animal noises, but could never repeat/remember the words. As she got older she would pretend to be a singer with a microphone and made up her own songs, because she could never remember the words to others. So whilst others were treated to renditions of Bieber or Taylor Swift, we had 'We are the rocking girls, we are the rocking girls, we like rock, we rocking, yeah oooohhh bay-by' It was very sweet but then she couldn't remember the words she had just made up, so the lyrics changed.

At Christmas Carol Concerts this meant she couldn't repeat the words to any songs. By the age of 5 we tried patiently with Rudolph the red nosed reindeer and finally got to the point where she could do the title and that part of the chorus. Sadly this would be the Carol Concert at school where she was taken out because her teaching assistant got stressed and thought her fidgeting meant she was about to have a meltdown. The poor thing thought it was because she was bad at singing. It's at times like that you know your child has additional needs, but the people around her don't understand what they are.

You know your child has additional needs when the local posh nursery throws her out for being too disruptive within 5 hours and the state school nursery says she can't cope. You know your child has additional needs when you are being brought in to 'talk' about incidents and they are 4. When they can't stand in line or sit on a carpet. When the school is lovely because everything's going well with one daughter, and it's a road to hell because everything's going wrong with the other.

After the incident at the concert I raged against the machine (school) and drove her off to a private speech and language assessment. I presumed it would be the first of many diagnoses - that it would be language delay plus Adhd or something similar. It came as a shock to find out the delay wasn't just a delay but a disorder. That she wouldn't grow out of it without therapist intervention, and that her subsequent manic and anxious behaviours were through frustration and fear at not being able to communicate with the world around her. After that I started to fight and now we have a situation where she has as much speech and language support as she can get on the NHS, in a mainstream school with a unit and she is learning. As usual I have one eye on the child and one eye on the future.

Sadly singing to my baby was never going to change my daughter's condition, but that would never stop me singing because if it make a difference or not, it still made her happy. Now she can read she learns the lyrics that way. Last Christmas (aged 7) she finally knew the words to her favourite song, Away in a Manger because she could read them! That's got to be something to celebrate - but I just wish the media wouldn't put parents down because their child has a language delay. It's not all about the singing and switching the tv off - it might be because they have an SLI and it's not been recognised.

Monday, 12 May 2014

What is SLI? Our story

Specific Language Impairment - more common than Autism, as prevelant as Dyslexia and yet an unknown condition. This impairment impacts on expression and understanding, on literacy and on socialising. It's an invisible disability and the lack of awareness can be frustrating in itself. I have lost count of the amount of times I've been told that the condition is 'rare' or just another word for ASD (Autism Spectrum Disorder). It's not, it's just unknown.

The charity I CAN www.ican.org.uk summarises SLI as follows:

Specific Language Impairment or SLI is a type of speech, language and communication need (SLCN).
Children with SLI are usually as able and healthy as other children in all ways, with one exception; they have enormous difficulty talking and understanding language. This is their main area of difficulty.
Children with SLI are all very individual.
They may:

Have difficulty saying what they want to, even though they have ideas
Talk in sentences but be difficult to understand
Sound muddled; it can be difficult to follow what they are saying
Find it difficult to understand words and long instructions
Have difficulty remembering the words they want to say
Find it hard to join in and follow what is going on in the playground
SLI is a very broad category, with some children having mild problems that are short-lived. Others have severe and persistent difficulties with both understanding and talking.
These difficulties are not associated with other conditions, such as cerebral palsy, hearing impairment or autistic spectrum disorders. Children with SLI are often as clever as any other child of their age but they still have difficulties with speech and language, hence the term ‘specific’, as difficulties are specific to this area.

My daughter has a moderately severe expressive and receptive language disorder, known as Specific Language Impairment. She has frustration and social impacted behaviour relating to the fact she can't communicate to the same level as her peers. It took me years to get a diagnosis for her, the NHS froze all our local Speech and Language services and it took for me to get a private speech and language therapy diagnosis in order to get her needs recognised. As a parent who didn't know about it, it was very difficult to even understand what the problem was, let alone get help for it. A year later and I got a statement of special needs for her and a placement in a mainstream school with a language unit. What was clear was that without the extra help she would not have improved. At her current school she has learned to read and improved her understanding but her expressive language is still far behind that of another child of her age. It's an ongoing process to have her needs recognised and to raise awareness of this invisible disability.

About SLI an article and links

"Children with SLI can be emotionally vulnerable and lacking in confidence due to their daily battle with language, the medium through which all human learning, living and loving operates"

This is a quote from a brilliant article today on SLI on the Telegraph website http://www.telegraph.co.uk/education/educationadvice/10695427/Uncertain-future-for-children-with-SLI.html which is written by Speech and Language therapist Fiona Barry (her details are here: http://www.talkingtipsforkids.com/pages/about-us)

If you want to do a DLA form and are wondering what to put, it's a great quote to remember. For a child with SLI and/or SCLN, language is a daily battle that permeates all aspects of life.

There are some great tips at the end of the article that I will add here too:
Breaking down instructions into smaller chunks, using short sentences and pausing between sentences to allow the child to process what they have just heard.
• Using pictures, diagrams and demonstration to explain tasks and keeping something visual available for the child to refer back to. • Fostering a safe atmosphere in which asking for help or clarification when needed is socially acceptable among peers.

For more advice try watching videos from the video-led campaign ‘Raising Awareness of Language Learning Impairments’ (RALLI) which has its own YouTube channel and offers a wealth of advice.