Moylan Family - Patricia's Page Patricia's Page

Patricia Patricia Rose Moylan was born on July 5 1988 in the
National Maternity Hospital, Holles Street, 2 weeks late and weighing in at just 5 and 1/2 lbs (2 and 1/2 Kg.). She scored 9/10 on her Apgar, but due to feeding difficulties she spent 2 and 1/2 days in the neo-natal unit. She seemed to lack the impulse to suck, and fell asleep each time she was fed without really taking anything. We were discharged after 5 days, Patricia apparently a small-for-dates but otherwise healthy baby. I was told that small-for-dates babies often don't feed well, but to try to make sure she got 18 ozs. of formula per day. This was the beginning of what became an obsession with trying to get her to feed. We fed her every 3 hours, and she would take maybe 2 ozs. in an hour.

Things improved somewhat as the weeks passed, with a slight hiccup when she had to have surgery at 5 weeks to repair an inguinal hernia. When she started solid food without too much difficulty she cut back her formula intake. She didn't seem to like milk, but I was told she needed the calcium (Ha!), so small tubs of fromage frais became a staple in her diet. She had what I now know to be a slight gag reflex, but at the time I just thought she had a small swallow. She was irritable and colicky (night-times were a disaster - and remained so till she was 5 1/2), and in hindsight slow to sit and smile, but she was our first child and we didn't really notice. If we had had John first we would have known sooner that Patricia wasn't really quite right. We discarded the baby books because she didn't develop according to their pattern, but she seemed an alert baby who put on weight and maintained her position on the 10th centile growth curve. Constant questions at our local baby clinic about her colic and possible digestive problems were discounted - "she wouldn't thrive the way she is if she had a digestive disorder".

At about nine months I stopped trying to "force-feed" Patricia, believing that by then she knew herself what she needed to take. She lost weight and dropped to the 3rd. centile (where I believe she would have been all along if I hadn't been stuffing her with food she didn't want), and the baby clinic decided she should be referred back to the Paediatrican who first examined her after birth. She still wasn't crawling, but we still weren't concerned. She seemed to be just about to. (In fact she didn't crawl till 1 year, and didn't walk till 20 months. She also reacted strangely to certain sounds, but back then I'd never heard of hyperacusis, never mind Williams Syndrome.)

There followed regular visits to her Paediatrician at Crumlin Childrens Hospital, various tests to determine was there a reason she was so small, all of which yielded nothing. Her delayed development started to cause concern too at this stage. Patricia age 2 Eventually at about 2 and 1/2 she had her first psychological assesment. When this was first suggested to me I was horrified - it conjured up images of a psychologically damaged child i.e. something I had done. At 2 and 1/2 she assessed as a 1 and 1/2 year-old. Further assessments over the years highlighted her uneven development, her speech and social skills always appearing normal (in fact her enunciation was so good that strangers whom she engaged in conversation and who assumed because of her size that she was younger than she actually was would say to me "What an intelligent child!" - I would just agree, what was the point in trying to explain?), reasoning ability not so good, but gross motor skills poor and fine motor skills abysmal. At 4 she was referred to the Occupational Therapy unit of what was then Cerebral Palsy Ireland, now Enable Ireland's Sandymount Clinic for a series of sessions to improve her coordination, and we were given a program of therapy to work with her at home.

Eventually at 5 Williams Syndrome was diagnosed, on the basis of her developmental profile and facial features. We were skeptical until we read what little literature we were given. When we tracked down the WSAI (which we had to do ourselves - support at diagnosis seems very lacking), and got all their literature, everything fell into place - "so that's why she doesn't like those noises! And can't use her hands properly. And only has 3 lower incisors. And the hernia" etc. etc. For the first time we read a develomental and behavioural profile that was Patricia - exactly. It was such a relief to know we hadn't done anything to hinder her development. And with the information on education techniques for WS she could be helped to learn.

When WS was diagnosed we thought hypercalcaemia might explain Patricia's continuing problems with night-time waking with colic. In fact calcium levels tested normal and ultrasound scans of her kidneys and bladder showed no evidence of calcium deposits. When we insisted that at this stage the problem should be investigated, tests suggested lactose and glucose intolerance. Cutting out all dairy products and anything with high glucose content solved the problem. Cardiac and Renal assessments showed no real problems, and Patricia continues to be monitored regularly for all physical problems associated with WS. She wore an orthodontic brace from January till June '98 to correct some mis-alignment of teeth, and also wears glasses as she is very long-sighted.

Patricia was already in a Montessori School when she was diagnosed. We were very lucky to have the school so near our home, and it had a senior class (for 6-9 year-olds). Class size was small, which is essential because of WS distractability, and she attended till June '98 when she was going on 10 years of age. Patricia attended the Special Education Unit of Good Shepherd National School Churchtown from September '98 till June 2001. She progressed well, and took part in various mainstream school activities such as choir (including performances as part of a 2,000-strong childrens choir at the Point) and class outings. Patricia attended Cabinteely Community School (a mainstream Secondary School) from September 2001 till June 2007. She had a full-time assistant to help her with organisation and transition from class to class, with hands-on subjects and with writing when necessary. This worked very well for her, and the school staff were very supportive. She coped with Maths with great reliance on a calculator. Hand-writing continued to prove difficult (she can write quite fast but it is illegible to anyone not used to it) so a scribe was organised for State Examinations. She sat Junior Cert. (the State Examination for 14/15 year-old's in Ireland) in June 2004 and passed with 3 B's and 6 C's, a wonderful achievement. She completed Transition Year in June 2005, and then took the 2-year Leaving Cert.Applied Course. She sat the final exams for this in June 2007, and got an overall score of 82%, another great achievement. She did a Foundation Course in Roslyn Park College for a year, and is just starting a course at the National Learning Network in Bray.

Patricia is a happy, healthy, almost-normal 20-year-old. She has been to swimming classes at Sandymount CPI, has progressed through Ladybirds, Brownies and Guides, and learned piano and musicianship by the Kodaly and Colourstrings methods at the Leeson Park School of Music. She has the wonderful natural sense of pitch and rhythm which WS people seem to have, but cheats on the sight-reading because she memorises tunes so quickly! She has written her own compositions, Jelly (MIDI file, 2KB) and an unnmamed piece (MIDI file, 2KB). Playing the piano strengthened her fingers, which helped her hand-writing. She gave up the piano lessons years ago (the practising got to be too much of a chore), but did music as a school subject, and also attends the annual WSAI Camp. Last year she also attended the FEWS Camp in Sweden

Moylan Family Website

Information on Williams Syndrome

Changes last made on September 2008