SAM'S STORY

Sam was induced at 36 weeks in 1998, he had problems latching on, so I breastfed him for six months whilst alternating formula from a bottle; I remember the nurse said his cry sounded like a screeching mouse. He was not a smiley baby. He would arch his back when put into the car seat. Getting him dressed was like trying to dress an epileptic octopus! He started solids at eight months, but gagged a lot.

At 18 months, Sam was babbling, chatting and tried to join in my conversations with baby babble. He did not like loud unexpected sounds. I had his hearing tested - it was fine. Sam reacted badly to his immunization jab when he was two years old; his leg was so swollen and he was in a lot of pain with fever, although it is not proven than jabs cause Autism Spectrum Disorder problems.

As a toddler Sam started displaying some quirky behavior - he would line up his shoes around him, he spent hours lining up his toys. He showed an interest in computer games, but became very tired until I discovered he was waking up at 2am. He would sneak into the computer room, turn the computer on, locate his game and happily play, but he turned the volume down so we couldn't hear, and he was only three years old!

Sam's vocabulary consisted of 'Truck' and 'Dink' (drink) which caused a lot of frustration for him, he was receiving speech therapy at three and a half years, but it wasn't too successful. He was very fussy with food, gagged and spat out most foods. We ended up giving in to his Milo milk addiction. He only liked pink foods (his favourite colour) and he refused to wear shoes. He hated the feel of labels on clothes, refused to wear jumpers, which was challenging when we went to New Zealand in winter - he wanted to stay indoors with the log fire. My husband, Brendon decided to by an Xbox (Sam was 4 yearrs old by then) Sam found his fixation.

Positive Parenting helped me when Sam was three years of age, he seemed less frustrated as I learned to cope with stressful situations guided by the triple 'P' ideas. I learned to stop denying his feelings (eg. Sam would say I want to kill (his new brother) Ben!...Ben was now 1year old (a 26 week premie but that's another story!) and previously I would say 'You don't, just play with him, he just wants to be with you' but I learned to say 'I know you are angry with Ben, do you want some time to yourself? I will keep Ben in my room while I fold clothes' ...ten minutes later Sam would ask if he could play with Ben. Sam just needed his space.

Sam went to daycare one day a week, but he was a loner - he said the teachers were very angry, and a few months later he joined a community-based pre-school. He was still struggling with speech, but it was a fantastic place - he seemed happy to play in the sandpit with others, he found the lessons fascinating, building blocks but he didn't enjoy painting and drawing. I had Sam's hearing tested again - tt was fine, an occupational therapist saw him and said his gross motor skills were good, it was just his speech. He was referred to a speech therapist, a young guy who would give Sam a task, and respond with 'No..that's not right!' Sam would shut down and get frustrated. After that year, the preschool and I discussed Sam's development and felt it would be beneficial to repeat preschool as they felt he wasn't ready for grade one.

Speech therapy and a repeated year in preschool were major keys

I now know, (Sam is now nine years old) the decisions made for private speech therapy at age four and a half years, helping him socially with friends and keeping him in preschool for two years were the most important, effective and successful decisions I had made.

At this time I changed his speech therapist and started private lessons, and within two months he was saying 'S' and 'F' (he could say 'F' words!) and putting sentences together - what a breakthrough - and he wanted to please his speech therapist and she knew how to approach him. She would say "You are so clever, I wonder if I can catch you out" or "Let's see if you can get through three pages". He loved the challenge and connected so well with her. He could finally say his name at five years of age. We practiced speech a half hour each day and rewarded him with X-box time.

Sensory issues

He tolerates music if it is quiet, but does not allow his brother to sing. He doesn't like hugs, although I sneak in a cuddle once and a while and he does not liked to be kissed. He would not respond to his name, especially if he was focused on something.

Sam has a few repetitive habits - he picks his fingernails constantly, keeping his nails short. He would clear his throat continually, and his speech therapist suggested we point this out to him and ask him to get a glass of water as he will damage his voice box. An appointment with an ear, nose throat specialist suggested he may have hayfever, so Sam took Telfast for kids - .after a while he stopped this habit. He started washing his hands, several times a day, he still does this. He shows signs of no empathy for people or pets, but with some coaching, and as he gets older, this area has improved. Sam doesn't find it necessary to smile, he said once '"Why should I smile to make other people happy?"

going to school

To motivate Sam to get ready for school, I set up charts - .first cartoon characters, then photos of Sam and Ben cleaning teeth etc - .all in sequence, breakfast, teeth, get dressed, socks and shoes. This worked well.

In grade one he struggled the first few months - he would come home so aggressive and take it out on his brother, Ben. He was annoyed he couldn't read straight away. I saw a peditrician, he said Sam seems too social to have Aspergers or Autism - he didn't like to label kids - and I was referred to an Autism specialist in Brisbane, who suggested speech therapy. But even though Sam showed Autism Spectrum Disorder tendencies he was too social and not severe. Sam was 'borderline' - the paeditrician suggested we put Sam on Ritalin to help with his concentration in class. I tried it for two months. The specialist said it would help Sam to focus, but he was reading and writing with confidence so I trialed him without Ritalin, and he seemed to be on track.

computer games for recreation & behavior management

I was so against the X-box at first, but I now realise it was a reward he enjoyed. I used it for bad behavior - taking time away - by banning it until the behavior was corrected. I gave him a clock and rather than me being the one to stop him playing (he would get angry at me) he would give himself an hour and stop himself - if he didn't he would only be allowed to play for half an hour the next time. When Sam started school I would only let him play on Sat and Sun morning, .as he was too focused on games during the week. Now it has given him the confidence to play with friends - something he excells in and that impresses his peers. I use it as a reward for homework, half an hour, four days a week. I take it away if he doesn't make an effort with school work.

He was very tired after school -he could'nt tell me what he was doing in the day, he would forget to put his homework in, and some days I dreaded picking Sam and Ben up from School, as the short trip home would be the two boys arguing. Sam wanted his space and Ben wanted someone to talk to and share his day with. Sam wanted quiet. I asked him why he gave me such a hard time after school - he pointed out he was good all day at school, so he had to be bad at home - he couldn't be good at both places - he asked if I would prefer him to be bad at school and good at home! I realised it was twice as hard for Sam to focus at school, so he just needed some time to recuperate.

Sam tried soccer when he was seven years old, but walked around on the field in a daydream. When he did get near the ball he would do a baseball slide to kick it, he spent more time on the ground than running. His running was lethargic and clumsy. The year before he tried baseball, he loved it and was very good at it - this game seemed popular with autistic kids, and there were a few on Sam's team. It's a team sport but slower with less pressure.

Sam at eight years of age played well at school, and his friends also played his games - Tiggy, Star wars etc. After two months in Grade three, it became apparent Sam was having difficulties focusing on his writing and reading tasks, although he excelled in Maths and Computers. His teacher is putting steps in place in the classroom to encourage Sam to complete work that he finds boring - if he is not interested, he daydreams and lags behind.

managing anger, behaviour and independence

Sam has a quick temper if someone is being unfair, a friend's brother threw something at him as payback because Sam hurt his brother Ben - Sam seems unstoppable as he wants revenge, he shakes with anger, as I try to reason with him to calm down. He says it's unfair if someone hits you then why can't you hit back - I explained that payback or revenge doesn't solve anything, it just gets you in trouble and both of you are very angry at each other. But if you calm down and walk away the situation calms down - and the anger will go away - then the person who started the problem may be in trouble, not you.

Sam was struggling with his readers, he just didn't seem interested in the topics. His teacher and I agreed it would be okay for Sam to read age appropriate Star Wars books - we read them together, I read one page and he reads the next. He is in the top reading class now.

Sam seems to be answering back alot in grade three, experimenting with mild bad language from school, so I set up a Ladder of Doom, it has 4pm up to 8pm in half hour increments, if there was bad language, disrespect, physical fighting with his brother, Ben, he would have to go to bed earlier. The first day Sam had to go to bed at 6pm (Dinner in bed), he wasn't bothered through the day.....but he did not like it at 6pm.....the next day and from then on he was well behaved.....I hardly have to use it now.

I have been quite adamant about teaching the boys to be independent, not to see their mum as their maid. So they do their own washing, fold and put away and they cook dinner one night a week. They get their own breakfast - some days Sam is so tired but I am now aware I need to help him on those days, I do part of what needs doing. Most days he is motivated to do his house responsibilities. Sam seems forgetful.....so I use 2 or 3 word reminders eg. Sam..milk..fridge. etc..

Sam is a very likeable character - he has a great sense of humour - and he doesn't tolerate silliness, unless he is instigating it. Sam avoids eye contact when he first meets a new adult, he would come out with 54 and 20 is 74! and so on......it was his way of trying to impress, connect with someone new. He generally takes about two months to warm up to strangers/new teachers..then he will engage in conversation, usually one-sided and generally about computers or games or star wars. He laughs a lot when he is with close friends he is comfortable with.

Sam is borderline Autism Spectrum Disorder - he is now in Grade three, and struggling with concentration on subjects he is not interested in, his teacher is excellent and helps him through this with rewards, but we both need more support as the school tasks become more challenging.

getting an official diagnosis of aspergers

Recently we went to a paediatrician and left with a diagnosis of Aspergers, which allows us to receive extra help at school. We also decided to trial Ritalin to help him focus at school.

Sam successfully completed his Grade three tests last week, he even finished first - his report is out on Friday - .but his teacher has informed me there has been huge improvement in completing tasks....

I'm a little sad he needs Ritalin, but I know it helps him - .there are no side effects so far - so will see how he goes. His favourite subject is Maths - he loves the fact that he doesn't need a calculator to add several numbers together. He is also in the Robotics class with older children. So I don't see an Autism Spectrum Disorder as a disability - it has a lot of positive effects, like dedication and focus on interested tasks - and it's just the little quirks that make it difficult for parents, especially if you try to fit a square peg in a round hole. So I will educate myself as much as possible to keep Sam on track and make life as much fun as it should be.

I am hoping to set up a website with stories from Mum's to help other mums..

Jane

Click here for the full range of Asperger's and autism fact sheets and personal stories at www.autism-help.org