For the love of Liberty

This is something of a different blog for me, but an important one.
On Sunday I had one of those 'meant to be' moments. Let me explain....
I have for sometime wanted to sponsor a child who was living in abject poverty in Africa (or wherever), but the many searches I have made have never really assured me that any money I donated really will help a particular child. Many areas of Africa for example are rife with corruption and fraud and exploitation and I did not want to fuel that in anyway.

Last year a friend told me of three children she was supporting via a community project in Uganda. She receives regular school reports and letters and made contact with the lady who runs the project via social media and felt very happy that it was what it purported to be. Even better, last week she and her husband shut up their house and flew out to this remote area in Uganda to visit the place themselves and meet the children that they are supporting and to see how best they can help this desperate community..

Two days into their visit they happened upon Liberty, who was curled up on a mat on the hard mud floor which is the place she has slept every night since being a baby. Her mother is mentally ill, her father is absent and her Grandmother does her best to look after them both.

Liberty is four years old. She has to walk for three kilometres to fetch filthy water from a well which is the only source of water in the area. There are no toilets or sanitation. She desperately needed a sponsor .

I contacted Doreen Kanyunyuzi, who is the lady who runs the community project often just to help people simply get the basics they need for survival. I asked how I could sponsor Liberty and what the cost would be.

I was aghast to find out that for £200 I can sponsor her education for a whole year, buy her uniform and shoes for the year and so importantly get her a mattress to sleep on. £4 a week could potentially give this little soul a path out of the poverty that the lottery of life of life threw her way. I didn't hesitate......

Within 12 hours the money was safely in Doreen's hand and my friend went along with her to tell the family the news. 

hey sobbed.

Sunday was the first anniversary of my Mums death. She is a woman who I miss immeasurably every single day and a woman who loved children and believed very strongly in kindness. She would have thoroughly approved of Liberty and I am so pleased, really thrilled to be able to do this in Mums memory.

If anyone reading this is moved to find out more or would like to help this project in any way (it does not have to be the commitment of sponsorship) please contact me for further information.

 If you are on Facebook you will find the project here 

https://www.facebook.com/www.careforthem.org/

The man with tape on his face. (verbal dyspraxia and its impact)

My eldest sons speech was completely lost on everyone but me until he was nearly seven years old. I remember as a very small child in a montessori classroom a teacher was unable to understand him. She got down to his level and apologised and asked him to repeat what he said but again she was lost. On the third time of asking she shook her head and looked pleadingly at him and this little soul took her in his arms and hugged her, as if to say 'its' Ok, don't feel bad'. I knew right then and there that I was mum to an exceptional human being. I was right, but much of his brilliance is lost on those who do not appreciate the complexity of the difficulties he is living with. One of those difficulties is with speech and language.

Developmental Verbal Dyspraxia (DVD) is a contentious diagnosis but it is recognised as a condition and it is worth talking about. It is sometimes referred to as childhood apraxia of speech.

2.5 million people in the UK have speech, language or communication needs (SLCN) but DVD is a relatively  rare condition and it refers to difficulties in making and coordinating the precise movements (articulatory) required in the production of clear speech (P. Williams)  Children with DVD find it challenging to make speech sounds correctly and to join sounds together in words and sentences.

Oral dyspraxia on the other hand refers to the challenges in co coordinating the movements of the vocal tract (larynx, lips, tongue, palate), when not producing speech. Children with oral dyspraxia have challenges carrying out oral motor tasks such as blowing and licking. It would seem logical to think that if a child has verbal dyspraxia they must have oral dyspraxia too, but research suggests otherwise. Some children have both but not all. 

It may exist on its own or be diagnosed in conjunction with motor dyspraxia (and other possible co existing conditions).

Speech and language difficulties per se are the most common form of difficulty seen in schools, perhaps because we easily recognise when a child's speech is not developing as expected. In an ideal world it will diagnosed early and appropriate and intensive intervention will offer the chance of very meaningful improvement. Sadly though these difficulties are often met with a 'lets review in six months' approach and these are extremely important months in language development and subsequently in the acquisition of literacy.
If a child is lucky enough they will receive the appropriate help but then people think it has been corrected totally and forever. The truth is that as with motor dyspraxia this is a lifelong disability. Individuals just learn to cope with it better and adopt strategies to overcome the difficulties they experience.
My own son was not one of the lucky ones, therapy was a very rare resource and his therapeutic input came rather too late. He didn't learn to read until he was 16 years old!
It did allow humour though. We watched the 'terrible vision' and he jumped on the 'bouncealine'. His words were often so much more appropriate that those in the dictionary. I can remember at his school (which was for children with speech, language and communication disorders) being sincerely welcomed to the 'Harvest Testicle' service! 

In reality most people with dyspraxia (with or without a diagnosis of DVD) can have language issues because they process information more slowly than most other people and when they have a thought or idea, their memory issues mean that they have to get the idea out NOW often causing them to interrupt others or to speak  hurriedly and with an ever increasing volume. This is not intentional, just a manifestation of the difficulty being experienced.

It may be difficult for the individual to keep up with a conversation at speed, or to change topics rapidly. It may be that spoken language is reasonable (my son can talk the hind legs off a donkey), but receptive language is impaired meaning that the individual is not really understanding what it is being said to them. This can make them look like they are lacking in intelligence because it takes them so long to 'get' things. They are in fact not lacking in intelligence at all, just differently wired.

Observing my own son recently I watched him as he tried to follow and contribute to a conversation being held by people he knew and was comfortable with. When he interjected he stuttered and stumbled in his efforts to compose a meaningful sentence, and the other contributors often finished his sentences or tried to second guess his contribution rather than giving him the time to be part of the conversation. Eventually he fell silent, lost his place in the conversation and returned to playing a game on his tablet, and his isolation. He was excluded by people who had no idea that they had excluded him.
Joe once said to me It is no good just explaining something. I have to feel the words. A wonderful explanation of how it is for him.

I watch him as he says 'eh?' to everything that is said to him and whilst I completely understand that it is his way of giving himself a little more time to process things, even I find it irritating at times to constantly repeat everything I say.

He also indulges in a lot of verbal rehearsal, planning and mouthing what he hopes to say next. This means that he is no longer really listening to what is being said to him, and that he looks rather eccentric as he madly mouths away to himself as he is walking down the street or in a crowded room. He is also unable to enjoy free writing as he cannot get the words together to both make a meaningful sentence AND write them down. He adores the theatre (and comes alive on stage) but learning lines is ridiculously difficult for him.

I often consider that if I sometimes am irritated, the person who knows him better than I have a right to and who absolutely 'gets' dyspraxia/DCD and what it means to those who are living with it, how must it seem to others, those that are newly acquainted. What it usually means is that he rarely indulges in conversations with people of the same age as him as he tends to gravitate to those who are older and less demanding or much younger who have less expectations of him, or others with difficulties., and that condenses his world. Developmental verbal dyspraxia cannot be seen but is very disabling in the fast paced world in which we live. I guess a reasonable analogy for those without it is to drop them off in a foreign country where no one speaks their language and ask them to navigate their way through the day. It is tough, frustrating, embarrassing and oh so lonely.

Joe tells me that it is like living with tape on your face. It is for the rest of us to peel away that tape and give him and others like him their voice.

What we might do to help?

• Give more time. Allow people to answer in an unrushed way. Perhaps use a bean bag or someone's wallet for the person who is speaking to hold until they have finished. Then pass it on.
• Encourage them to be honest. 'Please give me more time to listen and answer, I have a speech difficulty'
• Talk to them about something familiar or that they enjoy so they can feel comfortable.
• Help them to organise and plan their responses.
• Be compassionate.
• Include them.
• Use facial cues, visual prompts or body language to express yourself.
• Business cards with essential information will save the person having to remember and verbalise routine data.
• Be informed and help to raise awareness.

For further information please see...

www.ican.org.uk/help
www.talkingpoint.org.uk
www.dyspraxiafoundation.org.uk
Supporting children http://blog.optimus-education.com/supporting-sen-pupils-speech-and-language-difficulties-classroom-strategies-teachers-and-assistants
www.afasic.co.uk
Apps for speech and language can be found at  https://www.afasic.org.uk/resources/apps-for-speech-and-language/


Ref. Williams P. Developmental Verbal Dyspraxia (Dyspraxia Foundation Information sheet).

Barbed wire and barbie dolls. Neurodiversity and sensory overload.

People with ASD, dyspraxia and other hidden disabilities often have quite intense sensory systems. It may be that they feel more dynamically, smell  with greater intensity, taste assiduously,hear more keenly and see more brightly. It may be that they require some form of sensory input to calm themselves. For my son as a child it was blue tac and barbie dolls. He played with the hair tirelessly in times of need and required blue tac to squeeze in order to fall asleep.

mijo brands.

When he was at school he embarked on the ALERT (how does your engine run) programme and learned what he found energised him and what calmed him in times of over stimulation or distress. He was lucky to be somewhere with a full time Occupational Therapist who made it her business to explore this with each student. They were then each furnished with a bum back in which things such as therapy putty, stress balls, a small packet of raisins etc could be placed and used as needed and they were each given a code word which enabled them to leave a class and go outside to calm themselves as required. Such simple strategies which were absolutely lifesaving for him but also allowed for the smooth running of classrooms. People who fidget, bite their nails, twiddle with objects may be under aroused and those that avoid or run from situations may be over aroused.  Some may find light touch physically painful (like severe sunburn), or deep touch unbearable. Some may find haircuts and teeth brushing extremely distressing.We all have different thresholds of tolerance and these can change over time.

Sensory needs do not go away as people grow older. Some may diminish in intensity, some may be reduced by exposure and some may always impact the day and the individual needs to be able to access what helps them when they become distressed. They may stim *, wear headphones. use a stress ball, listen to music, push against a wall, chew gum. There are hundreds of different strategies which may assist different individuals. 

Sensory overload, is distressing and uncomfortable and anxiety provoking and is best avoided if at all [possible and it is for others to allow people to practice behaviours (within the parameters of acceptability) to enable that individual to remain calm and productive.

It is for parents to recognise the stressors, balloons popping at a party can be terrifying for some children, the many colourful displays that are in abundance in primary classrooms can be over stimulating and distracting, certain fabrics may feel like sandpaper against the skin, walking barefoot on some surfaces may be physically painful, looking someone in the eye may be extremely difficult, having different foodstuffs presented on one plate may induce nausea or the pungent smell of different food stuffs or different competing perfumes in the same small space simply overwhelming. A busy office may just be too much to bear whereas a quite corner in the same office may allow someone to be calm and productive.

There are things we can do to help. There are cushions for chairs,deep pressure lap blankets, twiddle pens, stress balls, movement, additional opportunity for breaks, study or work booths,  swivel chairs, big ball seats (which improve proprioceptive** and vestibular input#.) The list is endless.

We need to let people explore different textures, positions and environments, so that they can learn their limits and be in control of how to balance them. In a classroom situation this to me is a basic kindness as well as necessary for learning. In an office or work place it is about allowing a person to be comfortable, productive and valued. Something that is important to each of us and something that is surely every persons right. So if you see a child wearing head phones, or coloured glasses, or an adult rocking or chewing or who refuses to enter the works canteen, they are not weird, they are simply individuals who have learned that some things are intolerable and have discovered a way to make them less so. The rest of us need to listen, to accept and to allow for those very reasonable adjustments which make the school or work day something that can be looked forward to rather than dreaded.

*Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner. It is thought to give comforting/pleasurable feedback.
** Proprioception perception or awareness of the position and movement of the body.
# Vestibular The body's system of balance