Two -Three-Four-Five

Karens education started when she was six months old.She had a home liaison teacher called Gill Rohde who taught at Queen Elizabeth II Jubilee School. She came weekly to see Karen and brought ideas based on the Portage system. I was able to practice the various tasks and exercises with Karen during the weekly visits.I also found two books very helpful.One was called Teaching Your Downs Syndrome Infant by Marci J Hanson and the other was Helping Your Handicapped Baby by Cliff Cunningham and Patricia Sloper. They both were easy to use, breaking down accomplishments step by step and giving helpful hints on helping your baby achieve them.

Bill Cunningham and Patricia Sloper's book had been published in 1978 so was up to date and much more positive than the books about "helping mongol babies" which were still around then.The first chapter described coming to terms with the disability and was full of common sense and reassurance. It ended with a nice analogy from a midwife about the effect of an extra chromosome on the baby. She described it as being like baking a cake. Accidentally, a little coconut falls in.It's still a nice cake, but it has that little bit extra.The book then goes on to break down the physical and mental development of a baby into tiny chronological steps with a little square beside each to tick.In the section on communication for instance it goes through month by month from hiccups and cries at one month,to coos and chuckles and crows at three months, through ah-goos and mmmms to dada,babbling, imitating words, saying two words,six words and finally coming to a 3 word sentence at 2+ years.It did not matter that Karen never reached the stages at the chronological age she should have, what was enjoyable was the satisfaction of ticking them off stage by stage and looking back on her progress. When I looked at the book again recently I was interested to see That I never ticked off the box for the three word sentence because by the time Karen got to that stage I didnt need the book any more.

Although Karen did not sit without support until she was 13 months old,once she was off the steroid medication she made progress,and during here second year began to "bear walk", to stand,and to walk with her hands held.When she was two, she had her first educational assessment when she proudly demonstrated to the teacher her dexterity with her red spinning top, and her social security assessment which she slept through but granted her Attendance Allowance.She had been going to a mother and toddler group, which had been started up by a group of mothers I met at a postnatal support and exercise group we all attended, where she made some friends of her own age.In September 1981 she started school and playgroup.The playgroup was the one Elizabeth had attended and initially Karen went two mornings a week with a group of 2 and half and three year olds. Most of the activity was informal play, but there was always a milk and apple session when the children sat round the table , shared news and where one child would be encouraged to stand on a chair and sing a nursery rhyme. Karen soon had the first two words of Baa Baa Black Sheep learned by heart!Karen's favourite activity was the sand tray and about two months before her third birthday in 1982,she walked her first unaided step, moving from the table to the sand tray.

Karen started part-time at Queen Elizabeth 2nd Jubilee school,known to all as QE2 like the ship,in September 1981 .Every year the school has Christmas Entertainments. Karen missed it the first year because of being in hospital with bronchitis .She was to have played a Bubble. However in December 1982, aged 3 and and a half she played a snowflake.In future years she played a Victorian baby, a cat, a turnip-puller, a banana in Pyjamas, Mary in a nativity play, Gene Kelly and many other parts!

QE2 is a Special School,that is, a segregated school. At the time Karen went it was called an ESN(S) school .That is educationally subnormal(severe). Now it is called an SLD school(Severe Learning disabilities)Karen started at the school part time going some days to playgroup, some to school and some at home with me.When she was 5 she went to QEII full time. At that time, integration which is what inclusion used to be called was a very new idea. Isolated pioneering parents were getting children with Downs Syndrome into mainstream schools at the rate of a few every year but there were no formal systems in place providing guaranteed extra support and the head at Elizabeth's school said she would take Karen at 7 if she could read and write .Karen started off in the Nursery .There were 12 children, two teachers, two nursery nurses and one general assistant.They were full of enthusiasm and imagination and had lots of unorthodox ways of teaching the children.For instance the children used to slide down a slide barefoot into a tray of polystyrene chips!

To give you a flavour of Karen's early years at school I am going to quote you extracts from her school diary. Every Friday night Karen brought home a diary written by one of her teachers.Here are some extracts from the diary of May to November 1983, just after Karen's fourth birthday, written by her teacher.Week beginning June 6th.Monday morning ,work session on listening skills.Imitating rhythm of "hel-lo" on bongos.Karen got carried away with her drumming and I had to remove the drum from her just to hit the two beats.Matching sound shakers;noise and no noise.Matching linking animal noises to coloured pictures and line drawings. Before the session I talked a little about listening with their ears and where their ears were. Karen was very good at pointing where her ears( and others) ears were especially for the benefit of Kosuke who didnt know what ears were!

Tuesday morning splash pool session, followed by a language session. Karen worked well. She enjoyed the game where they each take it in turn to be a" monster"(with a blanket piece of material over their heads) and the group have to say/find out who it is. Karen was very vocal in school on Tuesday chatting jargon , singing to herself and babbling practicing different sounds. Tuesday afternoon we had the lid off the large sandpit which gave Karen the opportunity to do some serious digging .Friday morning Karen helped to make some yum yum biscuits which look and taste as good as they sound Lots of outdoor play in the sunshine with bikes , balls and large plastic building bricks.

WEDNESDAY June 15th.In the morning we had a play session-there was a whole variety of substances to feel with bare feet. Karen was not too keen-A dolls tea party with taped music to sing Happy Birthday and play Pass the Parcel.There was a selection of clothes to hang out and dry. A sound corner-different whistles, a sound effects tape,bells, a party-blower and a selection of shakers.There was also weetabix to feel and play with,dry and mixed with water and blue and yellow paint.In the afternoon they watched a video of themselves, made on Tuesday doing a drama all about working in the garden.Karen thoroughly enjoyed seeing herself on TV and pointed out all the friends she saw.Friday-Karen helped to make a fruit mousse and then to the Hall in the afternoon to see Goldilocks and the three bears. I'm Goldilocks!

June 29th Bathing the doll,a variety of wind-up and battery toys, tactile play with pasta,shaving foam, finger painting, wet and dry sugar puffs.September13th Karen worked well in the language session. She matches pictures and objects really well using biscuit, cup, car, spoon and book. She signed book, cup and biscuit and says book. She also enjoyed blowing bubbles through a straw, a whistle and general bubbling exercises.I used to write in the diary myself and tell the teacher about the weekends.On the 18th of September I sent in a list of all the words Karen used at home that I could think of. They were:banana, shoe,book, down, daddy,there, ear, hello, bye bye,see-saw, bow wow, light, cup,star, ball, more, apple, I, mummy(bubby),baby, E-a (Elizabeth),hoover, oh dear, sit down, dress,fish, toe,knee, dinner(inner),car, door and eeyuk(mess)I asked for the school list which was oh dear,sit down, oo(shoe,sweets, car,mummy car, daddy car, spoon, puppy,watch, a potty, a book, 'ria (Maria one of the teachers) inner(dinner) and eeyuk!

Karen was making progress in all sorts of directions. Here's what I wrote in the diary myself."Thank you for the list of school words which contained some surprises. After reading it I pointed to Karen's (empty) potty and said whats this? To which she replied "a wee-wee. "Yes, we would like Karen to try a toilet seat at school.Let us know how successful it is.By November I was able to report to the diary that Karen had gone without nappies all day and was using her potty sometimes at her own request.I was also reporting that Karen was learning two or three new words at least every week.Karen was now walking , talking and using the toilet.The next step was to learn to read , write and count. The next part of this story will begin in September 1984 when Karen said good bye to playgroup and went to school full time. Karens school page will take the story up to her eighteenth birthday when she got ready to leave school and go to college

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