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Jasmine's Marfans/CF/** AUTISM**

Took Jasmine to see a Doctor, from Sunshine Hospital, a specialist, just to check her out. My mother, who came with me, took turns chasing Jasmine up and down the hallway. We were called in basically on time. When I took off Jasmine's clothes, except for her nappy, she screamed blue murder.. The doctor checked her over, and my mother told the Dr. that I was diagnosed with Marfan’s and CF. The specialist knew about Marfan’s (Which shocked the hell outta me as not many Drs. in Victoria do). She asked me heaps of questions, and gave me referrals to get Jasmine tested for the diseases. Jamsine has an echocardiogram on the 17th September, Sweat Test on the 18th September, her eyes looked at on the 10th October and her results on the 20th October.

17th September 2001 : Echocardiogram :
Today was an awful day. We made it to the city, for Jasmines echocardiogram for Marfan’s. From the moment we got there, she knew it wasn’t going to be fun. My mother took Jasmine in the room as I knew she was going to cry, call me a chicken, but being single parents I can't handle seeing my children in pain. Mum also didn’t want me in the room, as seeing me will make Jasmines state worse. My father also drove us in there, while mum was with jasmine, who was getting the patches on her chest; I was next door having a hot chocolate with dad, reading the paper. After our 30 mins we went back in the clinic and sat down, and I heard Jasmine screaming blue murder, I felt my heart sink, and tears appear in my eyes. Then after 5 mins she stopped. Mum came out carrying her, as she exhausted herself.

18th September 2001 : Sweat Test

My parents, Jasmine and I went to the children’s to get her sweat test done. The Scientist wasn’t on time, so we all took turns chasing bubs up and down the long hallway. Ten mins later, we were seen to and she whined abit, but no tears or anything. You could see it was irritating her. After she cleaned the skin and attached the negative and positive electrodes on her skin for 6 mins, then took that off and wrapped the actually sweat collector with a bandage to hold in place on her arm. We then walked downstairs to McDonalds, where we had a muffin with vegemite, and a milkshake. Thirtu mins later we came back upstairs to the lab, where she took it off and we went home. She said she'll send a copy also the my local Doctor, so I can get the results in a few days instead on the 20th of October. I have no patience when it comes to test results.

10th October 2001 : Eyes Test:
My mother and I took Jasmine to the Sunshine Hospital for an eye test. While she ran flat out, my mother and I took turns chasing her. The first female checked out her eyes with a little eye torch, and underneath she put a Winnie the Pooh figurine so it would be easier for her to concentrate on the object. I held her tightly against my chest, as she was trying to escape. The lady then wanted to put eye drops into her eyes, and mum and me just looked at each other and thought, “You’ve got to be kidding”. So I gave bubs to mum, she held her and the lady squirted in the drops. Jasmine was fine with them, bit whining though. We then had to wait outside for the eye drops to take affect, and 10 mins later we were seen by the male Dr. who done the same routine as the lady before, with the torch and the figurine. He declared after 10 mins that her eyes were perfect. Nothing wrong with them.

16th October 2001 : Results:
Jasmine’s results are in, and she hasn’t got CF, as her sweat was low, and her echocardiogram, was normal so she hasn’t got Marfan’s either. The Dr. assessed her with toys and building blocks, but she was more interested climbing up on everything. The Dr. told me that she thinks Jasmine is **Autistic**. Because she was very premature, her development skills aren’t up to a normal baby who was born on time. They want to do a blood test on her, which I disagreed on, and a urine test, she can do, as long as she isn’t going to be hurt. They want to put her in special classes, in physio, and speech therapy. For her interaction skills, I have put her into a crčche one day a week. Just so she can play and get stimulated with other kids. They told me that; she’s more of a loner than a playing child with others. And she loves to climb. I laughed at that one. They are also going to look at obsessions and language skills.
Jasmine should grow out of it before school hopefully. I am not all that worried about her, as I didn’t start talking until I was 5, and I also went to speech therapy.

Jasmine was first diagnosis with being autistic I had no clue what the hell that was. I joined a club in yahoo with deals with autism they have been helpful, except they are adult not children. When the Dr. first diagnosis jasmine with this condition, she gave me some information, regarding the condition.
What do we mean by autism?

Autism is a puzzling disorder. It is difficult to understand the behaviour of people with autism, and the world is confusing for the person with autism. Autism affects approximately one in five hundred Australians, with boys more likely to be affected than girls.

Autism was first identified in 1943, bit it appears to have existed throughout recorded history. It occurs in all ethnic and social groups. Our knowledge of what autism has improved greatly, but there is no cure. We still do not know what causes autism, but it is to be a brain disorder. Poor parenting as once believed is definitely not the cause of it.

Autism is a developmental disability. A person with autism will have difficulties in several areas of their development. The areas most affected are communication, social interaction and behaviour. This development disability may have a particular pattern called autism, or there may be varying amounts of disability in other areas of development which result in patterns called ASPERGER SYNDROME or PERVASIVE developmental disorder – not otherwise specified (PDD-NOS). This whole area of developmental disabilities is referred to as Autism Spectrum Disorder. People with these disorders are affected differently, but all require specialised assistance and support.

AUTISM VICTORIA – Believes that the best way to help a person with an autistic disorder is to understand how the following three areas of difficultly affect their view of the world.
COMMUNICATION; Autism affects the ability of a person to understand the meaning and purpose of body language and the spoken and written word. Words can be misunderstood, interpreted literally or not understand at all. Other people’s feelings and emotions can also be difficult to understand.

SOCIAL INTERACTION : Social interactions an essential part of life for most people. People with autism find being sociable difficult, scary and very confusing. Some appear to withdraw and become isolated, others try very hard to be sociable but never seem to get it right. People with autism can find friendships difficult.

BEHAVIOUR: Impairments in communication and social interaction produce a range of behaviour that have become linked with autism spectrum disorders. These may include:

Speech ----- absent, delayed or showing unusual patterns.
Play ----- isolated, repetitive, unimaginative, destructive, and obsessional.
Tantrums ----- can be a way of expressing extreme confusion and/or frustration.
Sensory sensitivities ----- to certain sounds, colours, tastes, smells and textures
Obsessions ----- Intensive interest with favourite topics, objects, places, people or activies.
Insistence on sameness ----- routines bring some order to the autistic person’s confusion – a change to routine can be very difficult to cope with.
Body movement’s ----- such as hand flapping, toe walking and occasionally behaviour that may cause self injury (such as hand biting)

14th January 2002 :
Jasmine went to the Royal Womens Hospital for a check up by the specialist, to see whether Jasmine is autistic or not. I recieved a letter from them.

Dear Kathryn

Thanks for allowing me to access jasmine at the Royals Women’s Hospital as part of the COIN trial.
(The COIN trail is a study of premature babies, since jasmine was born at 27.6 weeks, I let her be in the study. No harm was given.)
There have been concerns about her delayed speech and also about some aspects of her behaviour, for example, she likes things to be done a certain way, her lack of eye contact and her disinterest in toys. She is currently on the waiting list for speech and language therapy at Sunshine Hospital and is periodically reviewed by Dr. M., who has suggested that Jasmine may have autism. It was please to hear that Jasmines general health has been excellent.

Although you have been diagnosed with Marfan’s Syndrome, it is felt at t his stage that Jasmine does not have this and Jasmine does not have cystic Fibrosis.

Jasmine was a busy young lady in my presence, she demonstrating her very good climbing ability and didn’t show any particular interest in any toys, other than to either walk on them, although at one stage she did pick up a few plastic pegs and hid them under a few objects on my table and dropped them to the ground. There was lots of vocalizing, but no meaningful speech and she became very pre-occupied with the moving objects on the computer screen.

She is a very tall girl, measuring 94.3cm, in the top 1% for girls her age and has a weight of 12.5 kg, which is in the top quarter. A rough prediction of her height would estimate that she is going to be similar height to yourself (approximately 6 Ft.). She does have quite loose joints and does have a normal heart examination. There are therefore features of Marfan’s syndrome and I am sure the Dr. M will monitor this in the future.

Yours sincerely
Dr GF.

Recieved another letter from another Dr. Who saw Jasmine on the 10th January.

16th January 2002 :

Dear Kathryn,

Thankyou very much for bringing Jasmine to see me on the 10th January 2002 when aged 241/2 months (age corrected for degree of prematurity).

Jasmine was assessed for the purposes of research on children who were born of very low birth weight. The test used was the Bayleys scales of infant development, 2nd edition.This test used was the bayley scales of infant development 2nd edition).

This test assesses development in different areas including receptive and expressive language, memory, visual and gross motor skills, visual perception and practical solving in children from 1-42 months.

Jasmine presented as a tall, active little girl who was able to sit at the kindergarten table for brief periods. Her concentration span was short and she was easily distracted form the task at hand. Jasmines eye contact was limited and both her receptive and expressive language development was markedly delayed. She did not imitate any speech but following a demonstration of a task she was able to copy it herself. Jasmine’s test cooperation was both variable and at times limited.

In the Bayley Scales today, jasmine was functioning at the 18-month level for mental development and at the 17-month level for motor development. In the view of jasmines limited test compliance Speech Pathology and Physiotherapy at sunshine Hospital within the next 6-9 months. Again, many thanks for permitting us to see jasmine at to observe her developmental progress.

Thursday March7th 2002 :
Friday night, about 1am Jasmine started throwing up. She vomited about 5 times, and then heaved about 4. My folks and I took her to the hospital (30 mins away). Stayed there until 5.30am in the emergency room, they didn’t know what was wrong with her, they said it was gastro, but she never got the runs. They gave her panadol to drink, and sent us home. They told us to see a local GP if there was any trouble, and also for the next day check up.

Saturday, she was beginning to eat less, and constantly remained with a temp. I used panadol and demanzin with her bottles and feeding. Made an appointment with the local GP in Melton, and he said stick with the panadol is fever continues, and demaniz for the runny nose. Sunday she was still the same, she wasn’t eating much and I was getting worried about her. Monday when I was chatting to dawn, I had to go; as I saw something it and I never seen before totally freaked me out. Bub was having a convulsion. So I called Darren he was here quick, and he went back to the hospital again. After 5 hours of sitting in the waiting room, we were seen to and sat another 5 hrs in the emergency ward. They finally told us that she has a virus of some sort, and she’s dehydrated. Her temp was 39.4 and she was constantly having fits in there. At 10 pm, jasmine and I were shown a ward, our own room, as bubs were contagious. And they also knew about my CF/Marfans, as I had to tell them due to medical history. Bubs had a drip on her for 3 days, i stayed with her all day and all night, on Tuesday night i couldn’t stay cos I started to vomit around lunch time due to the hospital food, and then I had the shits up all day. I went thru 6 pairs of underwear at the hospital every time I spewed, I shit. lol. So my mother stayed the night with her on Tuesday night as she was still throwing up. They gave her saline/water then added gluclose. She didnt eat much, as lunch on Tuesday it was spicy pork, mash spuds and carrots. Tuesday night was spring rolls. And they expected me to feed bubs that? I ate it and it gave me something! Wednesday the pedestrian came around with medical students, asked if jasmine was sick during the night, we said no, and were sent home.
Today is Thursday, and I am scared for her. She is still sleepy, without medication, she’s lost her bounce, and isn’t drinking water or juice very well. She is seeing my local GP in Sunshine tomorrow. I am constantly putting my hand on her during the night to see if she is still alive.
They said it was a virus as her immunization was fighting off the chicken pox, she developed this and now her immunization is very low, and can pick up colds and stuff easily. I have stopped throwing up and having the runs, now I have a cough from the hospital and its all phlegm.

April 2002 :
Jasmine had her assessment at Sunshine Hospital this morning and she went well. There were 4 different people in there, playing different games with her, and the doctor was chatting to us while Jasmine was occupied. It all lasted for 2 hours. A few weeks later, I got a copy of their report, which they will send out a copy to the special school which jasmine will be attending a few hours per week.
Case History : Jasmine uses only single words for communication and she does not respond when her name is called. She will indicate some of her needs by non-verbal methods such as pulling at her mothers sleeve or crying. She is reported by the family to respond to simple instructions such as “no”,”sit down”, ”get shoes”. She is also reported to know some of her body parts (eyes, toes) several colors and count to 5, (when she wants to.) She has some difficult behavior, in particular tantrums associated with frustration. She prefers to play on her own and rarely mixes well with other children her age. She likes to play with “MacDonald’s” toys and has some soft and hard toys that she carries around. There is limited pretend or symbolic play. She will however pretend to feed a doll and wash her toys faces.

She walked at age 15 months, she can climb up and down stairs and she can kick a ball. She can feed herself with a spoon helps with dressing but usually requires assistance. She is not yet toilet trained but indicates when she’s need to be changed. She has had formal hearing and vision assessments, which were normal.
Of note in her past medical history is that she was born at 27 weeks gestation with a birth weight 1,3 kg. There were no major neonatal problems.

Assessment : Assessment - The assessment findings are outlined in detail in the Developmental Clinic Assessment report. Jasmine was found to have significantly delayed/disordered receptive and expressive communication skills and play skills. Her eye contact was noted to be very limited. There were some fine motor delays delays related to upper limb stability and control. She had reduced attention for many of the activities, which made it difficult to complete some of the formal tasks.

Summary : In summary Jasmine is young girl with notable delays in her fine motor skills. There have been some significant family issues with the diagnosis of Marfans syndrome and cystic Fibrosis in Jasmine’s mother. We agree with Dr. M that Jasmine displays some features to suggest an autistic spectrum disorder. With improved maturity it is possible that some of these symptoms will improve but it is important to monitor her and consider a more formal assessment for this in the future should the need arise.

Here are some more pages of jasmine, one is her speech therapy session.

1. Jasmine Learns
2. Jasmine Speech Therapy

1st June 2004
Jasmine attended kindergarden for 12 months, and during that time she loved it. I, though have had problems with one of the teachers there. Jasmine doesnt eat fruit, and for morning tea, i gave jasmine some biscuits, or vegemite sandwich. The teacher told me it wasnt good enough, and that she had to bring in fruit. I told her Jasmine doesnt eat fruit, shes ausitic. She understood, but its was the rules. FUCK the rules. My daughter wasnt going to sit there and watch the other kids eat, when she doesnt eat fruit. So we compromised after 2 months, and Jasmine was allowed to bring in saladas & Vegie/ Sandwich & vegie.

Jasmines rountine at school:

Jasmine and I are up at 6.10am every morning, and the school bus picks her up near my house anytime after 7.15am. The bus drops her off in the afternoons, from 4 pm onwards.

TUESDAYS: Exercise(warm up)/Work/EXCURSION DAY.

WEDNESDAYS: Exerise (warm up) /Work:Social Emotional / Art / Yoga and relaxation.

FRIDAYS: Exercise (warm up) Shopping / cooking Lunch / Social Games /TV.

SENSORY: is an opportunity for children to learn to relax and help those children with sensory disorders. (under or over feel senses). They do listening, and mimal games(memory). Playdough and sharing Emotions. (feelings). They also do hygenine activities too, like hair brushing, dressing, cleaning teeth.

FINE MOTOR: Fine motor activies are activies where we work on the childrens dextwerity. EG: Writing, threading, cut and paste. We ensure they use their dominant hand and grip the pencils appropriately.

On her excursion days she has been here with her classmates/teachers.
Police Station
fish and chips
Indoor Entertainment center
Look at birds eat chips and take a walk.
Melbourne Show
Science Works
Local Shopping Center
Time Zone
Walk along the beach.
Farm - animals
We look at the botanical gardens
We saw the “robots” movie at the cinemas
Melbourne Zoo
Airport to look at planes.
And science works.

17th October 2006 - Jasmine's New School

Jasmine left her Ausitic School and was sent to mainstream school, twice a week, and then in term three she started going full time as she was getting bored with her old school as needed more stimulation in learning. Jasmine loves her new school and has been through many challenges. At her old school she's used to rountine, she not keen on changes, esspeically if there is a substitute teacher on at the last minute. At her old school she used to have time out periods. If another student was annoying her she used to use the "quiet room" and work alone in there, which she liked. Also some days if the child got tired, he/she may be able to lay down for 20 minutes or go outside for time out. At her newschool they dont do it there. So its hard getting out of an old rountine into a totally new one. Jasmines also the type to bottle things up. She will tell me if shes had a bad day at school - 2 weeks later.
Jasmine gts an aid at her school Mrs KK. 16 hours a week. Jasmines loves Art and craft, English and she’s also very good at maths. She loves to read. Jasmine is also a whiz on the Internet and also on the computer. Jasmine also has a very good memory she’s like a walking calendar. Even though at the new Mainstream school she isn’t on excursions weekly, the whole school goes out once a term for some fun. Her mainstream school has 104 students. From prep to Grade 6.
Jasmine still needs help with some social skills and also some speech therapy.

25th August 2007 - Jasmine's New School update

Jasmine's aide situation at her new school has slightly changed. She still has 16 hrs a week, Mrs KK has Jasmine for a few hours from Monday - Thursday and another Aid, S, has Jasmine all day Friday. Jasmine has her moments in class which has shocked her teacher a few times. For example, not wanting to sit near "Jane Doe", but "Mary" instead to work with. Jasmine will react by crossing her arms, and stamping her foot,then the tears will flow. This doesn't happen all the time.
Jasmine loves sports and likes to help out whenever she can. Jasmine has made many friends at her new school and has her own social circle.

The original "65 roses" by Lee J. Collier"
In Memory Of :(Marfans)
Other People with Marfans
Marfan’s syndrome
beals VS Marfan
Cystic Fibrosis
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Tristan's heart Murmur/CF

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