Child Of The Month

Olivia
by Pam Taylor

Hello, my name is Pamela Taylor. I am married to Bob, and we have three wonderful children: Rebekah 11, William 10 and Olivia 5. Olivia is the reason that we are with IDEAS.

Olivia was born a week later than her due date. I was induced, and had a pretty easy delivery (as easy as deliveries can be!), which was very quick. She appeared to be a healthy, normal baby weighing in at 7lb 11oz. She slept almost constantly, needing to be awakened for a feed. We did, however, notice that she seemed to stop breathing every now and then. When I called for the nurses to come and see, by the time they managed to get to us, she had started to breathe normally again. We went home after four days.

At 14 months, Olivia had her MMR vaccination. She was such a brave little thing and didn’t utter a sound. One week and a day later, she took her first febrile convulsion, she was hospitalised for observation and allowed home the following day. Two months later, the same happened again, and up to now we have been convulsion-free.

Up until the age of 18 months, when Olivia was becoming increasingly late reaching all her milestones, we put that fact down to her being content and being the third child. Deep down, I had an idea that something wasn’t right. She couldn’t sit up unaided without folding totally in half. She didn’t crawl until she was 19 months, didn’t talk or babble, seemed to have a fixed stare, and had recurrent ear infections.

Eventually, when Olivia was 18 months, she had a development check with her health visitor. It was very clear to her that something was not right, so we were then referred on to a paediatrician. He ordered a battery of test to be done. Liver functions, full blood count, thyroid function (I have thyroid problems), and, as he said to me, “I will do a chromosome test too as we are doing everything else! I don’t think that we will find anything there, but we will do a process of elimination.”

The tests came back. Everything was normal …except of course the chromosome test. Her karyotype was 47 XX +psu dic (15) (pter-q13::q13-pter) Ish psu dic (15) (q11-q13). We weren’t actually given Olivia's karyotype until November 1999. I suppose the paediatrician didn’t think that it was important to us. He had given us a verbal diagnosis for her: “de novo maternal isoduplication of chromosome 15 in the Prader-Willi/Angelmans syndrome critical region”. Well, as you can imagine, this left us totally baffled. Most of the specialists seemed to latch on to the Prader-Willi part, even though Olivia didn’t actually have that!

After her diagnosis, we were referred on to The Children’s Centre, which houses many specialists. She was put into an early intervention programme, which was fantastic. There she got the help that she needed. She had speech therapy, occupational therapy, and physiotherapy; she attended a small group, and was being observed and assessed by clinical and educational psychologists. As well as being at the Children’s Centre, we tried a joint placement at a mainstream playschool and nursery. Although they tried their best to accommodate Olivia and her needs, it was proving to be far too traumatic for her. It was at this point that the autism was becoming more obvious.

Olivia had a battery of tests, done from evoked response tests under sedation for her apparent selective hearing, to EEG’s for her absences. Both were negative, and her EEG showed no signs of epilepsy but an immaturity of the brain. Again I now believe this to have been the early signs of the autistic disorder. Olivia eventually walked just after she was two. For the next year, her walking looked like she had just that minute taken her first steps. She still has an unusual gait, and walks with her left foot turned in slightly, lifting it high to take a step. She will charge around just avoiding a collision, and her spatial awareness seems to be a little confused at times.

Olivia's speech was very slow to develop, and she was an expert at making animal noises, before she could say a word. Her speech is very good at the moment. She can say anything, and can sing even more. Her understanding of the spoken word is very delayed though, being that of a child of 2 years and 10 months. This doesn’t seem to have improved over the last six months since her last assessment with her speech therapist. She will be assessed again soon, as her speech therapist feels that the gap between expressive and receptive language is widening.

Olivia uses stock phrases when she becomes anxious and will repeat them over and over again. She parrots a lot of things, and even copies mannerisms of other people.

Toileting is another one of Olivia’s delays. She shows no signs of wanting to use the toilet. She will sit on the toilet and use it appropriately (sometimes), but only if we initiate it. She will soil 7, sometimes up to 11, nappies a day, denying it if she if we ask. She is on co-phenotrope medication for this, as her transit time is around 3 hours, and the medication slows every thing down.

Olivia has no sense of danger or their consequences and is an expert absconder. Consequently, doors need to be kept locked and higher fencing has been put up in the garden. She also has a very high pain threshold, and unless there are physical signs of an injury, we are unaware that she has hurt herself.

Over the last year Olivia has become increasingly difficult, showing very challenging behaviour. When we are out in public, she becomes very distressed and usually begins to show this by saying, “the crocodile bite me”. This is the start of her ritual. She then follows with crying, screaming, spitting, lashing out with her arms and legs, trying to take her clothes off, and calling everyone, regardless of their gender, a “stupid lady”. She has very erratic mood swings from aggressive to almost angelic. We can never anticipate what will trigger her off, so trying to avoid a potential tantrum is very difficult.

Olivia is now in full time school. She attends a fantastic special school locally. She travels to school on a bus, which she really seems to enjoy. The only problems we encounter there is if there is any change to the regular surroundings whilst we are waiting for the bus to arrive (e.g. roadwork, loud noises, someone different standing at the bus stop with us, or if anyone tries to talk to her without an invitation from her first). Her class is very small with only 8 or 9 children, depending on which day of the week it is, as most of the children are only there 2 or 3 days. While she is there, she has speech therapy twice a week, physiotherapy once a week incorporated into a P.E lesson, and an individual learning programme.

Olivia is a very affectionate little girl, and if she chooses you, will smother you with hugs and kisses. She tends to favour older children and adults, especially if she is getting that golden one-to-one attention. She is also a real character and has us all laughing with some of the strange little things that she says. Rebekah and William adore her, and although she quite often spoils their fun and is aggressive with them, they love her to bits and are very protective of her. Olivia is quite small for her age and has small hands and feet. She is a really beautiful child with long golden hair and gorgeous brown eyes. Sometimes her eyes seem so deep that you could just fall into them. Although she has made our lives very different, she has shown us not to take for granted what you have. It has also made us appreciate even the tiniest of steps. This is our story so far.

Child Of The Month Archive

Child of the Month	Lisa Poore
Child of the Month	Spencer Gray
Child of the Month	Lindsey Young
Child of the Month	Olivia Taylor
Special People Profile	Cheyenne Rain Jackson
Special People Profile	Naomi
Special People Profile	Bobby
Special People Profile	Kevin
Special People Profile	Olivia
Special People Profile	Megan
Special People Profile	Sarah
Special People Profile	Cheyenne D
Special People Profile	Joshua
Special People Profile	Robert
Special People Profile	Frederique
Special People Profile	Julia
Special People Profile	Ryan
Mount Prospect Times Article	Jake
Epilepsy Foundation Newsletter	Will
Exceptional Parent Magazine Story	Joshua D