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Tuesday, 25 November 2014

Women's Hour and Radio 4

The Radio 4 appeal this year is for Afasic - the speech and language charity for people with language and communication difficulties. However despite repeated tweeting and emailing Radio 4 and Women's Hour are still not replying. I'm trying to raise awareness for SLI as they still have repeated sections on other communication disabilities but I am yet to hear any mention of SLI. As it is one of the most common but least heard of impairments you might think they'd be interested!

It's Listener's Week this week and I have tried again by tweeting but if anyone reading this blog could give it a go as well that would be great!

Come on Radio 4 it's about time someone noticed SLI!

More awareness needed

The reason I started this blog was to raise awareness of SLI and it was interesting to see an article about this on Huffington Post  this week which I think I have posted previously #SLI 
and this tweet from ABSALT Clinic: 

 Nov 23
Have you ever heard of Specific Language Impairment? It's more common than Autism!

This prompted a twitter conversation with ABSALT Clinic who are a private speech and language clinic in Northern Ireland who were brilliant in covering some of my most asked questions, I'm posting the conversation below: 

Me: As a parent of kid with SLI I know it is more common than Autism but most parents I meet have kids w/ASD and few with SLI - why do you think this is?

ABSALT Clinic: Severe SLI may be more obvious but not always understood. Awareness & recognition of SLI is improving in schools, Also, is there an acceptance that in a class of 30 some childen will struggle & so their difficulties are not flagged?

Me: my daughter was severely affected but expect a lesser problem with SLI could be seen as general slow development/behaviour problem

ABSALT Clinic: and are crucial in identifying . Also, many cannot go down the private route for support

Me: and I couldn't afford actual slt only initial assessment
ABSALT Clinic: Yes, I see firsthand the burden it is for many parents who come for private SLT. Sometimes it's the only way to get access. Our SLT colleagues in the community services are slammed & being asked to do more with less & are under huge pressure too
Thanks to ABSALT Clinic for answering my questions.

What more can we do to raise awareness and campaign for better SLT?

Thursday, 4 September 2014

Debate over SLI terminology - what do we call it?

There is a debate going on over terminology with SLI. It is so unknown compared with other terms for language impairments or communication difficulties, and the question is, is this because the term Specific Language Impairment is not working as a label?

I think this might be less to do with terminology and more to do with awareness and media coverage. Dyslexia is a wide term referring to reading difficulties but is only widely known because of the focus on it during the 1980s, around the time my brother was diagnosed it was seen as a little known condition that affected many people. We were given a leaflet that cited such luminaries as Albert Einstein as being dyslexic and focussed on how it wasn't a measure of intelligence. Very little coverage is given to SLI in the same way. There are no famous people from history, or current celebrities shown as role models. I've done a quick google search to

Famous people with learning disabilities

On this list many are cited as having dyslexia or mild autism, but only one - Steve McQueen - seems to have an undiagnosed language learning disability which might be S.L.I. but since googling have found out he has had it diagnosed as dyslexia.

Is it time for SLI to be seen as part of a group of language disabilities and given more prominence that way? I wonder how many of the list also had S.L.I? Where does it go in adulthood, are all children affected with it destined for an invisible future?

In terms of awareness, either you reterm SLI as something which sounds like dyslexia/dyspraxia (giving the people affected by the condition another difficult term to remember!) or you start to push for more awareness of the thing itself.

There is very little awareness in schools, for example. Where are the leaflets and the checklists? The TV shows and characters? In addition is the diagnosis itself used as a coverall for a developmental delay with language. My daughter doesn't have dyslexia, which surprises me, but as soon as she was given enough support has learnt to read fairly quickly. Her issues come with learning language grammar and concepts in expressive spoken language. So how to we help the uninitiated to understand verbal and receptive language disorder?

I am contemplating a play or book about a character with SLI so if anyone is interested in encouraging me, please get in touch! Adults and children alike need more understanding so that our children don't end up like the dyslexics of old, stuck at the back of the class being told they are stupid.

Royal College of Speech and Language therapists - SLI information

Monday, 18 August 2014

School's Out

Wow, I didn't realise I hadn't posted for so long, the whirl of statement review followed by summer holidays has made me blog barren! I'm back for a brief post and hope your summer is going well.

Yet again the summer for us is a question of one step forward three steps back stage. Daughter is doing ok but has a complicated relationship with growing up, and as she gets bigger it becomes less easy for her to get away with making noises and pointing instead of sentences. At this point I am reminded of how much positivity is needed in parenting and being a child with communication difficulties because of the inevitable frustration on both sides.

However I saw this today and was so pleased to see a young man taking huge strides with his empowering overcoming of a speech impediment. I am posting it as a holiday treat -  The lad from Educating Yorkshire, Musharaf Asghar, who managed to find ways of overcoming his stammer is taking the presenting lead on a spin off series about speech therapy. I wish him all the best and am so pleased to see a young person being so confident and visible about their own communication needs. More power to you Musharaf!

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?