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.
statisticallysignificantscience.wordpress.com 
On being a ‘Young Carer’
The BBC are running a special report in November on Young Carers in the UK and have asked people with experiences with caring to share these with them. I shared mine in three parts, as I wrote too much. It’s a sort of conscious stream of thoughts, feelings and memories so I apologise for the poor style but if you are interested here is what I wrote to them:
My name is Olana Tansley-Hancock, and was a young carer from the age of three. I am now 23, and although no longer living at home having been at University for the past four years I will never stop being a carer for my family.
Unlike most other young carers I knew when I was growing up, I had the unusual circumstance of all three of my family members having disabilities and I was the only ‘normal’ one. My mom has grand mal epilepsy, and a degenerative spinal condition, my big brother is also epileptic and in recent years has unfortunately been diagnosed with biological depression also. My little sister, Roxanne (who is adopted) has cerebral palsy, epilepsy and severe learning difficulties. At the time of her adoption I was only 3, my brothers epilepsy had just been diagnosed and was uncontrolled and my parents were still together. However, my father had begun showing signs of bipolar disorder. When I was five my parents divorced. My mom encouraged me to be involved with Roxanne’s physiotherapy and care as it was really the only time mom got to spend with me.
We moved to a new house when I was 5, and then it was just me, Mom, Dietrich and Roxy. Over the years Dietrich’s epilepsy got more and more under control. Although, I do remember some scary moments when he was having medication changes, like the time he lost his memory and tried to strangle me cause he thought I was a stranger. Or the time he got electrocuted by the electric fence in the nearby fields and he had multiple seizures so severe he had a heart attack. I was walking with him in the field on my own at the time, and had to get him home semiconscious. I was only 9. I remember watching my mom performing CPR, and apologising to the ambulance men for ‘wasting their time’ cause normally when he’d fit, a neighbour would drive Mom and D to the hospital and the ambulance man said ‘if you’d waited for a lift from a neighbour your son would have been dead’.
Mom’s fitting used to scare us all too, but we got used to the routine we had to follow when they did happen. We knew to phone the ambulance, to phone her friend to come over, and to have pain killers and a glass of water ready for when she’d come round. I knew where the medications were in the house, I knew exactly how much medication and what medication everyone of my family took to tell the ambulance men when they arrived. I knew how to put my mom, brother and sister into the recovery position, I knew how to insert rectal diazepam, I knew how to do my laundry, I knew how to cook basic dinners, I knew how to take money out of a cash machine and pay for electricity and gas, I knew how to put the coffee on in the morning for mom, I knew all of these things and more and I was only 7.
I never once envied my other ‘normal friends’ with their ‘normal families’ because to me there was nothing abnormal about my family and I still don’t see them as different.
So we didn’t have yearly family holidays off to faraway places, but instead we went on trips to London to the hospital, or to care centres and we’d always get a Burger King on the way home, and being from the Isle of Wight we didn’t have a Burger King ever! We did go on two family holidays in my childhood, both to the same place in Scotland. I have very fond memories of snow, skiing and squirrels. I believe these holidays were paid for by a charity organisation, as we stayed at a cottage that was specially equipped for the disabled.
My sister had respite care every other weekend, and my Brother got a place at a very good boarding school because he was super smart! So from the age of 11 he only came home for holidays. My sister also a few years later got a place at a specialist school for disabled children on the Mainland and she was there from the age of 11. At that time I was 12, and in a drama school on the Isle of Wight. Just two years later my mom’s back went. She has since had 4 operations on her back and undergone many complications due to these. Whilst it was I suppose ‘easier’ once Roxy and Dietrich went to boarding school, my mom’s disability got progressively worse and worse and I was the only one left at home to look after her. At the age of 11 I was introduced to the Young Carers Project on the Island and they’d take me out on the odd weekend to go horse riding or to the cinema.
When I was 14 I was at a private school on a scholarship on the island, my mom cleaned at the school to pay for some of my tuition that wasn’t covered by the scholarship. She did this until she ended up in hospital because of her back. During my GCSE year my sister underwent an experimental operation to readdress the weight distribution through her feet, this was initially thought to have been unsuccessful and we were told she’d never walk again. She defied the odds however after being in plaster casts for 12 weeks and spending her Easter holiday at St. Mary’s Hospital on the Isle of Wight because we didn’t have the space for her at home in a wheelchair.
I was meant to take all 10 of my GCSEs a year early but due to my caring responsibilities I fell ill in the year before my exams, I missed a crucial 3 weeks of school through exhaustion and it was decided that I should only sit 5 GCSEs early. I still achieved grades A*-B for these exams. I then changed schools for the 7th and last time, and went to the local state school. Here I was able to take two AS levels early along with the rest of my GCSEs. Throughout all three years of being at this school my mom was in and out of hospital. I was running the house and doing to cooking, cleaning and shopping. A charity called ‘Crossroads, now Two Counties’ on the island would pick me up once a week and drive me to Tesco to do the weekly shop. I’d then be the one to do most the cooking, and would fit in my school work around everything else. I finished my high school education with Ten A*-B grade GCSEs, Four A-C grade A levels, and One B grade As Level. I always tell my friends/teachers that being a carer gave me an unfair advantage at school when they all saw it as a disadvantage, but I was so determined to focus on something other than my family that I poured about 70% of my energies into school, the other 30% went into Irish Dancing. I had been dancing since turning 14 and it was the only thing that made me forget absolutely everything about home life. When I was dancing nothing else mattered, nothing else existed, and I was going to be good at it.
I got a place at University and chose to go to Royal Holloway as mom had been getting stronger and I felt being only an hours’ drive from Portsmouth was close enough and yet far enough away for me to feel safe about being away from home but also so that mom could regain her independence. I’d taken so much of it away over the years by doing everything for her that had I been only in Portsmouth or Southampton for Uni I really do believe neither Mom or I would have found out who we were over these past four years, relying on each other as we had done for so long.
Over the Christmas Holiday of my second year of uni my mom fell down the stairs, knocking the bone marrow cage out of place that was surrounding the base of her spine. She developed septicaemia and the infection was so aggressive that she was air lifted to Southampton General Hospital for an emergency operation on New Years Eve. I remember the phone call from the nurse at the hospital, she said ‘your Mom says to tell you to carry on with your new years plans, go out and have fun, and she’ll call you in the morning’. None of us realised how serious her condition was until the weeks that followed. She could have died that night, but thanks to the hard work and amazing dedication of the team at Southampton she was okay. She spent the next month in Southampton and I had to put my studies on hold. By mid January I’d worked out a plan that involved travelling up to uni Monday-Wednesday for essential lectures, coming home via Southampton hospital to be with mom’s dogs Wednesday evening to Sunday, the neighbours looked after the dogs on the days I was away. I didn’t know at the time but this sort of thing is called ‘extenuating circumstances’ in university speak, I didn’t ask for any extra considerations for any of the assignments I handed in during or after this time as in my opinion I wasn’t the one in hospital so why did I need special considerations. I still came away from university with a high 2:1 in Psychology. I have spent this past year studying a MSc in Human Neuroscience and hope to do a PhD in a year or so. My interest in neuroscience comes directly from my family, all of them have disabilities that are a direct result of atypical brain functioning. It always comes back to that; the brain. I want to do more than be a physical help to my family, I want to help on a larger scale now, help fix the original problem so to speak.
The support I have had throughout my life has come from my family, they give and they take like any family. Disability has nothing to do with it. The young carers did help, but dancing helped more, finding something that was just mine was the most important thing for me. Other outside help didn’t really come into it, for example I only found out this year that as a carer you should get a free ticket at the cinema when accompanying you’re disabled sister or mom or brother. How has it taken 23 years for someone to tell me this information? Despite these silly little things, I do not feel like I have had a ‘disadvantaged’ childhood any more than someone who comes from a poorer background would have had. There is nothing ‘unusual’ about my family and I would not change a single thing about them, well maybe one thing, it’d be nice if I hadn’t been born ginger (I hear there’s no cure for that).
Anyway, back to the present day, my brother is back living at home, running his own business with help from mom, who is continuing to get stronger despite having a degenerative illness. My sister is at a development centre learning independent living skills and improving herself all the time. I visit her at least every two weeks and we hang out like any sisters in their 20s would (maybe with a little less alcohol and clubbing but still we have our own fun).
I will always care for my family, you don’t stop being a carer just because you no longer fit under the banner of ‘young carer’. Instead you’re simply a ‘carer’, you’re under the same banner as the husbands and wives who care for their spouses who had age related illness, or the children of elderly parents caring for them, there is no longer a distinction. To be a carer at 20 is a lot tougher in terms of outside awareness than being a carer at 8 or 18. My family are my inspiration, motivation and happiness, and I love them.
Hope that’s given some insight into things, I do get that my situation is a little unique. I can’t say I met many ‘young carers’ at University.
Hope to continue to try to understand the brain and go on to fix a few things!
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