Category Archives: Help and information

My personal experiences of Cerebral Palsy

Melissa Parker is 20 and, as a result of a break from education due to surgery, is undertaking A-levels with hopes of earning a place on a law programme in 2013.

I first became interested in writing about my personal experiences of Cerebral Palsy when I read Andrea Dworkin’s article “Through the Pain Barrier” – it provided a forthright, fiercely earnest and human account of pain, disability and aging.

Being “normal”

It was also overwhelming because, having had Cerebral Palsy all of my life, it is difficult to remember that my experiences are not “normal.” They do not conform to other people’s experiences and perceptions. It was a moment of clarity, transparency, lucidity to remember certain times in my life that have been shaded, positively or negatively, by experiences such as these.

As a child I grew up with a mother who was determined that I would be “normal”, I did not in point of fact think there was anything out of the ordinary about myself until I was nine, and why would I? I had most of the customary childhood experiences: I played Mary and hit Joseph on the head, with a providentially, plastic baby Jesus. I would amuse myself by wearing toy high heels on my hands rather than on my feet, I would spend most of my early years as a quintessential tomboy complete with knee-length football shirt, which my mother had bought me as an Easter present, and quite naively as I then thought, assumed I would allow her to return it purely because it was too big. There were moments when my disability would affect existence, though I was apathetic about it, after all I knew and, as I realised when I read the aforementioned article now know no different. I had camouflage splints and a wheelchair which was yellow with red stripes. As I have grown those things have altered and as a consequence physically, emotionally and socially so have I.

I think numerous people automatically assume that disabled children are naturally angelic and my mother has always told me she did not know what to expect of a child diagnosed with Cerebral Palsy. However, what she got was, in all probability, the child most unlike the child she imagined, in terms of temperament, determined, stubborn and inquisitive. I would most often question all and make observations to an, in general, taken aback audience.

Side-effects of surgery

When I had the second surgery, I did have hallucinations I was an axe murderer, vivid dreams where, I admit, my wickedness took on an atmosphere akin to a Robert Louis Stevenson novel. This was as a result of potent painkillers and was a contributing factor in my decision to stop using them soon afterward. I refer to that period as my “Yellow Submarine” phase. Looking back I was a sixteen-year-old girl who had been pumped full of drugs it is no wonder they effected me so significantly furthermore it is also accurate to say that realism is difficult when your perceptions are so altered.

I remember a few things exceedingly, and sometimes dreadfully, distinctly so much is ambiguous and might not have happened, I remember most evidently the one split second of regaining consciousness, an overwhelming understanding that it was going to be arduous, laborious and exhausting nevertheless I was going to get on with it. This feeling occurred after both surgeries it was just, I believe, an innate knowledge that I had to.

I am fortunate to have had my mother as my supporter, the stoic woman I know, from the youngest of ages I wanted to emulate that strength, she has inspired me to fight regardless.

I was recently told that my disability made me determined to succeed I was initially offended by the remark it was so indifferent, listless. I can, after all imagine that any disability gives people determination, fortitude and resolve.

Botulinum toxin A

The one memory I will always retain, etched into my remembrance indelibly, is my experience of Botulinum toxin A, also known as Botox, anyone is considering trying it to treat Cerebral Palsy should not be put off by the following narrative, I am aware that it has helped many. However as I writing about my understanding of the events to inform others I believe it is important to give a sincere account of my experience. I was a young child when I had my first, and only, treatment with Botulinum toxin A, it was not effective however it was a distressing experience. I recall the first sharp pain, just as evidently as I do my Winnie the Pooh backpack, I remember being held down as the others were injected into my legs and I recall, most vividly, wondering why my mother and god-mother, who were both present, did not intervene. I have been asked since whether the fact that the treatment was not effective contributed to my antipathy toward the experience. I do not know. I do know, however, that I am pleased I tried it. One day there may be something which alleviates Cerebral Palsy and it is that knowledge that makes experiences such as these worth it.

The experiences which have built what I refer to as ‘character’ have been numerous and thus far I have been exceedingly fortunate that my physical world has been, comparatively, unaffected however there are instances when one is aware of physical barriers, mobility lessens when pain is enhanced is a truth as I have acknowledged

The one emotion I felt through the years, especially as a teenager, is frustration. It has motivated me immensely; I believe the teenage years are the most arduous phase emotionally, which has made me consider writing something that will be, I hope; an earnest and human account. I recently read Ernest Hemingway’s A Farewell To Arms and was most conscious of the following quote: “The world breaks everyone, and afterward, some are strong at the broken places.” It sums up my views and beliefs about my own disability and experiences.

 

Supporting parents of disabled children

Guest post from Jackie Logue – Scope Early Years Training Manager and the author of Working with parents: Of Children with Additional Needs (Inclusion).

At the Kidz South conference, Scope Early Years Training Manager Jackie Logue gave a presentation called Parent Support to help professionals who work with disabled children to:

  • understand the needs of parents and the wider family through diagnosis and beyond
  • learn more about breaking down barriers between parents and professionals
  • recognise the importance of valuing the child

Through diagnosis and beyond

Jackie, as the mother of a daughter with complex needs and as a Portage worker, has seen the relationship between parents and professionals from both sides.

What parents mean when they say they are “fine”

  • Fed up
  • Insecure
  • Neurotic
  • Emotional exhausted

Breaking down barriers between parents and professionals

Parents and professionals, Jackie said, often want the same things but sometimes they are at cross-purposes.

  • Turn up on time for appointments
  • Cancel if you can’t attend
  • Ensure family understands what is said at meetings
  • Do you check parents understanding of your role and what you can do?
  • Do you always pass on information you promised to get them?

Tips for professionals working with families of disabled children

  • Keep an open mind
  • All children are unique
  • Share information sensitively and honestly
  • Carry out your promises
  • Little things count
  • Encourage parents to ask questions
  • Be prepared for conflicting views
  • All parents/carers are different and will want different things
  • Ask what information they want to know and in what format
  • Take time to listen
  • Don’t judge
  • Be honest, be positive

 

The best toy we ever bought

Guest post from Rose-tinted World – a parent of a family affected by Irlen syndrome and dyspraxia. She blogs to raise awareness of these condition and to share information with others affected.

The best toy we ever bought is also the simplest. At first glance you might even struggle to see that it is a toy at all. The toy that has helped my children so much is an unassuming, plain and empty black tray.

The tray itself fits easily on top of my children’s small playroom table and can be easily stored behind a cupboard when not in use. However, this amazing toy has rarely been away in the five years we’ve had it.

Irlen syndrome and specific learning difficulties

Both my children experience symptoms of Irlen syndrome. This is clearest in my seven-year old daughter who experiences discomfort when reading and writing. She is a reluctant writer who will use the minimum of text to finish any task that she cannot avoid by other means.

What this toy has allowed my children to do is to develop their understanding of narrative form throughout their childhoods. This would be good for any child, but for a child with a specific learning difficulty this can be essential.

The empty black tray has been many things over the years; a seascape, a farm, a zoo, a pre-historic scene and even space-world. The tray can be made into anything the children imagine it to be: Sometimes scientific, sometimes fantastic and on occasion downright absurd. Most ‘worlds’ are created out of the children’s existing toys and require no expenditure or trips to the shops.

Creating worlds and storytelling

What the creation of worlds enables children to do is to build up stories using the building blocks of storytelling. First there is a setting (ocean with shells and sand, farm with trees and fields, pre-history with rocks and stones, space represented by shiny aluminium foil). Next the child can add features which denote this setting (boats, barns, fir trees, rocket) and then finally the child can add the ‘subjects’ of their story or inhabitants of their world (pirates or fish, famers and cows, dinosaurs, astronauts or aliens).

By building up this world the child is creating the story of this world and its inhabitants. This is a tangible version of the process children undertake when writing a narrative (‘On a dusty lunar surface a rocket stands surrounded by aliens. An astronaut peers out of the window…).

The child can also create their world starting from the ‘subject’ of their story by then building the environment around their main character (‘The farmer wakes up, walks to his tractor and drives over to milk the cows’).

Once the world is created then the scene is set for the story to develop any way the child’s imagination chooses it to. Moving the characters around to interact with their environment allows a child to build up more sophisticated plot and narrative. Long storylines can be developed which would simply be impossible if the child were reliant on their ability to write.

This can free a child up to experience the joy of storytelling and plot creation. My daughter used to cry if I asked her to write a sentence. She quickly became frustrated and uncomfortable when confronted with a blank page of white paper. This same child could create a world of fairies that would occupy her and her brother for two hours.

Developing narrative skills

What our empty black box has done is to enable both of my children to develop their narrative skills in a fun and meaningful way. Yes, it has taken them both longer to build up the writing skills to do this on paper. Fortunately, their language skills were already developed, simply waiting for their writing ability to catch up. This has prevented them from falling behind too far and has ensured they are growing up with a love of language in all its many and beautiful forms. This allows them to transcend their frustrations and discomfort they associate with pens and paper. It enables them to flourish and evolve into not only confident and happy storytellers but also into the potential natural historians, physicists and anthropologists of the future.

Our square tray measures 60cm x 60cm and it 7 cm deep. We bought ours five years ago from Hope Education.

This comes as a ‘Creation Station’ on sale for £6.59. This can be bought from Hope Education with along with a number of ‘mats’ with the base of different scenes designed on them.

Before we had our wonderful empty box, we cleared a shelf on a secure bookcase. This shelf was at the children’s height and they used to create ‘scenes’ on it.

Regular stars of ‘scenes’ and ‘worlds’ are dinosaurs; farm animals, zoo/safari animals, fairies, dolls house families, ocean animals/fish, aliens, insect and dragons. Props include cars, dolls house furniture, bath toys including boats, rocks, shells, miniature farm buildings, rockets and lunar craft. All of these come from my children’s own toy boxes.

Touch screen devices and disabled children

Guest post from Elvia Vasconcelos, Includer, North London

 

I first saw the potential of touch screen devices a few months ago when Mary, mum of Julian, a three-year-old with global development delays, handed us an Ipad for us to play. Both I and Julian were thrilled and excited when we saw it lighting up. Julian knew what to do and clicked on the application he wanted to use. I followed in wonder.

So what is an app?

“Application software, also known as an application or an ‘app’, is computer software designed to help the user to perform singular or multiple related specific tasks.” Wikipedia

They can be divided into Web apps and Mobile Apps. I will be referring to the later ones as they are designed to run on smart phones, tablet computers, portable media players and other personal digital assistants.

Out of curiosity, App was voted Word of the Year in 2010 by the American Dialect Society. In 2009 the word was Tweet, the word of the past decade was Google (as a verb) and in the 90s it was Web. There is no escaping it!

Potential of touch screen devices for disabled children

Julian is three and although he picks up on everything his mum says he can’t speak. It is still yet to be seen if he will be able to write in the conventional pen and paper way but when he started the Farm animals app he did spell. I was amazed at the control he had on the device and how intuitive it all felt. That was when I first realised the true potential of the ipad, and more generally touch screen devices for disabled children and how much of an impact they will have on special needs education.

The range of applications in special needs is wide and is constantly growing. A very popular one is AutoVerbal talking soundboard. It’s a text-to-speech program developed for non-verbal people with picture buttons that speak pre-programmed messages (such as “My name is Julian”) and it also has the type anything function that allows for more advanced users to carry on conversations. I found a lot of very enthusiastic reviews on the itunes website from people that have been using these apps with their autistic children and it is easy to see the correlation of these programmes with the already instated communication tools in educational settings such as the Pecs (pictures exchange system), Visual timetables and Makaton. I found a couple of websites very helpful in tackling the 30.000 plus apps available: www.SNApps4kids.com and oneplaceforspecialneeds.com.

Overall, apps can be divided into the areas of communication and speech; language and literacy; behaviour, schedules and social cues; cause/effect. There are also tones of games, musical activities and movies.

Also for medical purposes iBiomed is a mobile software application developed for parents of special needs children, to help in managing the complexities involved with their care. It is handy for all medical conditions, but is even more useful for: Autism, Asthma, Allergies, ADHD, Cerebral Palsy, Multiple Sclerosis, Diabetes, Alzheimer’s, Fibromyalga, Migraines, Depression, Bipolar, Schizophrenia, OCD. It’s a free app and there is also an online version if you don’t have any of the touch screen devices. It seems like a very good tool and I have already signed up for a test run.

Happy apping, finger tapping!