Learning to write with cerebral palsy and learning difficulties

My sister has cerebral palsy and additional brain damage (mostly to her right hemisphere) that has caused her to have severe learning difficulties and epilepsy. When she was adopted as a baby my mom was told she never learn to speak, let alone read or write. As she grew older the hours of speech therapy definitely paid off, and at 21 she can have as coherent a conversation as anyone (although she does sometimes need to repeat herself to people who don’t know her so well). However, whilst she has always been very chatty, her ability to read and write has wavered. I remember us being at school together (she is only a year below me in school years) and she’d be sent home with reading books aimed at 5 year olds when she was around 9 years old. It would seem as though she was learning to read quite well after you’d gone through the book a few times. She seemed able to read entire story books like Bif and Chip, if someone had gone through the book with her first, but it soon transpired that if you covered up the pictures, or made her attempt to read a randomly chosen page out of order then she was stumped. She’d memorise the books and regurgitate verbatim what someone had read out to her previously! I think this is a ‘trick’ common amongst young children learning to read, particularly because those story books are boring and repetitive.

For as long as I can remember her idea of handwritten words resembled something a 2 or 3 year old might scrawl when pretending to do “grown up writing”. A series of p’s that looked a bit like this:

With the arrival of a computer in our house it must be said that her ability to write single words did begin to develop but again she was merely mimicking what someone had shown her. It wasn’t uncommon to find a Word document saved under a name like ‘fsddh’ and open it to be faced with a list of ‘words’ such as Dog, Bog, Mog, Fog, Sog, Rog. It was a while before she began to put words together into sentences. The first one she wrote with no supervision is annoyingly burned into my memory.

It simply read: “ Olana is a fat pig”

She’d gone around the house asking different people to write down a single word from the sentence so she could copy it and put it together as a surprise.

Reading and writing has always been a part of her education, although I’d say it was never the main focus. Basic numeracy, social and ‘life’ skills were possibly the more important aspects, once she’d mastered writing her own name by hand. She still struggles with counting money but is more than capable of using a calculator for difficult sums if she needs to, she can also read time quite accurately these days.

In the past two years something rather different has happened when it comes to writing. She is now twenty one, and lives full time at an independent living centre for disabled adults, where she attends many different classes including numeracy and literacy lessons which are taught as an outreach class through the local college. In these she is slowly learning to put together her own words for the first time ever.  I think one of the most useful things she has done in conjunction with these lessons is to have joined facebook. It’s turned out to be a perfect medium for her to practice putting together full sentences. The last part of this post will be made up of direct quotes from her posts and private messages she has sent me. As you will see it is almost as if she has developed her own way of writing, whilst it may not be correct in terms of spelling and punctuation most of the time, it is still readable to those who know what to look for.

Here is the first message she ever sent:

August 2009

i ded not no nat d es on face book now

This isn’t too hard to understand if read aloud as if phonetically, it says ‘I did not know that D is on facebook now’. (D is our brother). The problem with reading out loud as if phonetically is that due to her cerebral palsy she doesn’t always pronounce words correctly, so she often spells them the way she says them, not as how they ‘should’ be said. For example a Remote Control is called a ‘remoke’ in our house.

I’ve tried looking at theories of language to find comparisons between the way my sister writes and development of reading skills but to very little avail. I have noticed that when she talks she often falls into the trap of over generalising a rule to words that are not regular. So that she will say things like ‘we drived home’ instead of ‘drove’, which is something younger children only begin to do once they start learning to read and write at school, but never did previously.

There are certain consistencies in my sisters use of language when writing that we’ve learnt to interpret (and although we have tried to correct her on these they have remained). Examples of these are things like always writing ‘Pes’ instead of ‘Please’, which makes some sense if you hear how she pronounces please in speech. The most persistent and confusing of all however is her use of  ‘ec’ instead of ‘ing’, so ‘going’ is always ‘goec’.

September 2009

i am goec to bed naw can i toc to u at 11pm pes

(I am going to bed now can I talk to you at 11pm please)

I’ve tried to work out why ‘ec’ has replaced ‘ing’ in her mind, some ideas are that when she pronounces ‘ing’ she is making a ‘cah’ or ‘kuh’ sound at the end so puts a ‘c’, or that on a keyboard capital G and C look quite similar so she’s confusing the two letters. It could even be a bit of both I suppose. If it is that she’s confusing G and C on a keyboard you would expect this confusion to occur in other words where g is replaced with c. I have found a few examples of this:

September 2009

can you pes gum up

(can you please come up)

October 2009

i am up set be gos alex hos goc naw

(I am upset because alex has gone now)

It seems that she will replace G’s with C’s when the G occurs in the middle or ending of the word, and will replace C’s with G’s if the word begins with a C. However, she does know that ‘Ch’ makes a different sound to a C on its own as is demonstrated in this example:

October 2009

i am sore fo chuteg a wa

(I am sorry for shouting at you)

Here she doesn’t stick with her usual ‘ec’ to replace ‘ing’ either. She’s made shouting into two distinct sounds created from ‘chu’ and ‘teg’, usually she never misspells ‘you’. Words ending in ‘y’ often become words ending in ‘e’ or ‘i’.. so Happy will be ‘hape’. I believe this is a common error made by young children when learning to write.

My favourite message from her was sent very early on and reads:

olana can u sop tacec the nec at of me i dot lic et won u sa i cut rit pes

(Olana can you stop taking the Mick out of me, I don’t like it when you say I can’t write, please)

I know it’s wrong that this made me laugh, but I never really took the Mick out of her (promise!)This referred to a private message she’d sent to our Mom asking her if she could get a new computer but she didn’t write the word ‘computer’ she instead wrote ‘cum pot’!  In all seriousness though, I think it’s fantastic that she’s doing as well as she is despite having suffered such severe brain damage, she continues to exceed ours and the medical professionals expectations daily.

Her ability to put together sentences is growing, although the words aren’t spelt all that well they are usually easy enough to decipher. We went to see Tim Minchin perform in December last year and her status became ‘I lic tim minchin’ (lic is like, although she probably wouldn’t say no to licking him either!) She also wrote this message on his facebook fan page:

faku tim fo a gut cho nysnat i am gated theat i cud not met you i wech you cyt ta ta am fran can you dot

(Thank you Tim for a good show last night, I am gutted that I could not meet you. I wish you could *something I don’t understand* can you do)

As you can see sometimes the messages aren’t always all too clear, and I still struggle to understand everything she writes. The problem we then have is she can’t read her own words back, whilst she has no trouble constructing her little sentences if you ask her to read what she has written say a day later she won’t be able to tell you.  Such as ‘i cum sot paec tec toc doc’ My best guess with this one is something like ‘I can’t stop playing tic tock doc?’ but I’ve no idea really.

She is also getting better at writing by hand, although her letters can still be quite big, she now spaces words out a lot clearer and will attempt capital letters where necessary.

The oddest thing about all of this I find is her comparably low ability to read despite her continued  progress in her writing skills. Her brain-damaged being mostly right-sided is consistent with the suggestion that language and writing abilities are predominantly processes controlled by the left hemisphere. However, reading is also thought to be dominantly a right-sided processes, the strangest thing here is her inability to not only read ‘proper’ sentences but also failing to read back things that she herself has written. I hope that she can continue to develop her literacy abilities as she gets older, although at 21 I’m not sure how far she can progress or what is already set in stone, I guess only time will tell but for now she’s doing just fine.

6 Comments

Filed under brain damage, cerebral palsy, disability, family, literacy, neuropsychology, Personal

6 responses to “Learning to write with cerebral palsy and learning difficulties

  1. I have some of her handwritten cards/letters she has written which I will scan and post as soon as poss. Hope this is of interest to some people, and gives some hope to others. :-)

  2. Miriam Said

    I can understand her perfectly.

    faku tim fo a gut cho nysnat i am gated theat i cud not met you i wech you cyt ta ta am fran can you dot =
    (Thank you Tim for a good show last night, I am gutted that I could not meet you. I wish you could entertain my family can you do it)

    i cum sot paec tec toc doc’ = Ican’t stop playing tick tack toe.

    Your sister is amazing.

  3. //ooops! My short, ‘how interesting’, reply became a mini-essay! Sorry!//

    As a geeky linguist I have to say that this is really interesting. Here’s my two pennies’ worth, approaching it from a totally different angle:

    As you say, most children will tend to treat all verbs as regular verbs until they begin to read and write, the regularisation of verbal paradigms as in ‘we droved’, therefore, is often regarded by some linguists as a positive step towards a more communicative language as it is seen as more ‘natural’ than the irregularities imposed in the Standard. Indeed, non-standard forms such as ‘we was’ are becoming ever more visible, and will, one day inevitably, become Standard. My point is that, as far as I see it, generalising the ‘ed’ ending to mean ‘action completed in the past’ does not show a linguistic ‘mistake’ as it serves a very clear communicative purpose: ‘we+driv+ed’ = ‘who + what action + when’ (interestingly the ‘spelling rules’ of the past tense *are* realised, we do not see we driveed (as we might expect), presumably because of an attempt to recreate the phonetic reality of the word). The generalisation of the ‘ed’ paradigm does, however, demonstrate a non-conformation to the Standard form of English, a common feature of new ‘web-language’ bed by Social Media. Taking our earlier example it is fairly common to see instances of ‘we was’ on Facebook because it is not a Standard English space. I would argue, therefore, that the use of this language on Facebook is acceptable and to be expected, perhaps more so than a more Standard variety such as: ‘We took a drive in the country’.

    The systematic replacing ‘ing’ for ‘ec’ is also fascinating, and attests to the arbitrariness or our orthographic system. Unlike in some languages (like Spanish) we don’t have a ‘phonographical’ writing system, that is to say that where as in Spanish an ‘o’ always has the same sound, an English ‘o’ will change – (consider the words ‘dog’, ‘loud’ and ‘over’). There is therefore no inherent ‘natural’ logic to our writing system, even today the same phonetic words can be visually represented in a number of ways: colour / color, foetus / fetus, travelling / traveling, chocoholic / chocaholic, etc. Given the fact that your sister has had less ‘linguistic socialisation’, shall we say, means that it’s understandable, if not expected, that she will not be as sensitive to the normative standard and invent ideolectical ways of representing sounds.

    In a poem or fictional work, if trying to replicate the variety of English spoken in the North, it would not be considered ‘wrong’ to write ‘ey baai gumm t’aint half ‘ot in’er’ or a similar phrase. It is through ‘linguistic-socialisation’ that we are taught that this, although acceptable in oral language, is not ‘correct’ in written language (unless in poetry and fiction whereby we grant them ‘artistic license’ to stray from the norm). Standard language therefore prescribes spelling rules which do not reflect our phonetic, physical or experiential, reality, they are a social construct.

    All in all then, I think that, at least from this geek’s linguistic point of view, whist your sister’s use of language may not be Standard, but is communicative and understandable in linguistic terms. It would be interesting to find out if she is sensitive to the idea of Standard and ‘correctness’, (though given that she doesn’t like being made fun of and that she underwent language therapy I would imagine that she is.) I think that her ‘misuse’ of language is therefore is less about the ‘workings’ of the language but more about questions of social spaces, linguistic adaptation, register, the ‘use’ of language in context.

    //Collaborative PhD?? //

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  5. Thankyou so much for sharing this insight into your wonderful sister.
    I am the proud Mum of a 7 year old with cp and we are just starting to see the learning gaps with literacy due to the brain damage. My son is having huge issues with reading and visually perceiving information as well as remembering sight words. He remembers everything you tell him( that he hears or does) but visually big gap. My son has a sister and a brother and I hope they have a wonderful relationship like it seems you do :)

    • You’re welcome. I hope it can be of some help? My sister has had a lot of additional support with her literacy and numeracy recently, which I think is helping with the sudden range of words she’s able to use. It does seem to go in stages though, sometimes she can go for months or even years with very little progression both mentally and physically and then she’ll have a sudden spurt of development. I have a friend with cp also who graduated from uni the same year as I did, so it just goes to show the variability in individuals with cp and their abilities. Keep up the good work, continued exposure to the things that are a challenge is the best form of medicine/treatment in my opinion and then it’s down to time and encouragement to do the rest. I’m hoping to start working on some more posts about my sister in the near future so keep an eye out for those. In the mean time please don’t hesitate to get in touch if you think my experiences may be of some use for you all. Best wishes, Olana

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