The current stress that is occupying my mind is when to start Harry in school. Next year he will be 4 turning 5 in March. He was assessed by someone at preschool at the end of last year and I still don't know where she is from! But I happened to randomly run into her while we were out and she recognised Harry, and basically she said "whatever you do, DO NOT enrol Harry in a special school. He is more than capable of mainstream schooling". So that was one decision that was easy to make! But as early starters has now been phased out I have had people tell me that no one enrols their child in school at 4. When my first son started Kinder at least half of the kinder (5 classes of about 22) were 4 years. I also know quite a few friends who are strating their children at 4 in the same school. But the big question is will Harry cope?
I have been told I am stupid for even considering starting him at 4. I think it would be stupid to not think about the idea. His preschool is nice, they treat him well, and he enjoys himself there immensly. Wether its making him school ready is another story. For a normal child that does not have autism its a lovely environment where they are constantly singing to you and inviting you to join in to fun activities. School is going to be a BIG shock for someone like Harry. But does that mean I just put the shock off for a year? My intention would be to have Harry do Kindergarten for 2 years. One year to learn to socialise and basic appropriate behaviours in class. The next year would be to actually learn kindergarten things eg. reading and writing. I think it would be mean to keep him in such a sheltered environment of preschool for one more year and then say 'well your 5 turning 6 now, you get one chance at Kinder so you better make it a good one'. Then he has just one year to learn everything and not be able to repeat! What if he is constantly behind because he was never able to learn things properly?
I discussed my fears and opinions with the school principal. He was more than supportive. He was more than happy for Harry to do 2 years of kinder and seemed to think this was perfectly acceptable. We would apply for funding of course and the biggest hope is that he could get funding for someone to be with him at recess and lunch. These are the times when things are going to get hard. When he is unsupervised, there are big kids, and he copies innappropriate behaviours as he doesn't know any different. Unfortunately Harry is going to be harder to teach than other kids. Wether he starts when he is 4 or 5. I was given the opinion by someone "I'd be really annoyed to get someone like Harry in my class". Unfortunately thats the life of a teacher, hopefully there will be funding available and support from other teachers. It is a fantastic school here, there are a number of other children with special needs, so I can't imagine Harry is going to be a shock to the school system.
We will need to organise an IQ test, another developmental assessment (if anyone calls me back) and apply for funding. Luckily the principal has said that even though we are out of area he will definetly accept Harry and there is no need to decide till the end of school. So thats a relief!! Oh how will I make this decision?? Whose opinion should I listen to? Family, experienced principal, preschool teacher, myself who should always know best?? I guess I will see what the assessments show and keep trying to decide!
Monday, April 11, 2011
Wednesday, March 23, 2011
Heading into the Autism debate
We've all heard the media reports. We've all heard other parents views (educated or not) and we all have our own views on why our child may have autism. In my first post in this blog I present my view on what contributed to Harry's autism - wether this is correct or not is pure speculation. We have heard that originally it was a childs 18 month immunisation. Then this was disproved with the revealing truth that the data was incorrect and skewed to present results that have become very damaging. Now we are hearing that actually, this may be correct, and it may contribute. BUT only in children who are predisposed to having autism. With no way of knowing if your child is predisposed do we immunise or not? My personal view is that I will always immunise my child. Seeing the effects of diseases that could be erradicated and seeing them in my child would be too much to bear. I will not rely on herd immunity.
On meeting Harry's clinical psychologist his view was very different and it made sense. He enlightened us about a process children go through when they are 12-24 months old. As they learn such a huge amount of information in such a small period of time and then they need to learn things like walking, talking, eating and socialising. An infants brain will 'temorarily' lose (or forget) information such as the colour red or what a spoon is. He says when a child is learning to walk it is quite normal for them to stop talking for a while as their brain is focused on the walking part. His view is that a 'normal' child will quickly relearn these things and it is never an issue but an autistic child's brain will lose too much information and not be able to regain it. Harry has required quite intense early intervention, speech therapy and occupational therapy to talk. His speech is still poor but we are lucky he continues to learn more all the time.
I watched a program on tv called 'The brain that changes itself", it is also a book by Norman Doidge. Basically it is about the brain's neuroplasticity especially young childrens and that scientists have believed that different parts of the brain are responsible for different things. Through rehabilitation of brain injury victims he has seen that this is not the case, the brain can relearn new things in different parts of the brain even if the original part of the brain has been damaged. He believes children with ASD have the potential to alter their condition and change the way their brain works. Very interesting reading. I guess I have seen some of this with Harry's early intervention and therapy. Whether this is a result of his brain changing or just helping it to learn is open to interpretation. He also talked about his belief that children with ASD have brains which are more maleable and are more elastic and stretchy so they actually process so much information at one time and this is why they can go into sensory overload. This also helps to explain why some children with ASD are classified as savants. They have an amazing ability to excel in a certain area, more than children without ASD. Their brains work differently and in some areas better. Is this the brains own mechanism to counteract the parts of the brain that are not working at their desired potential? Alot more research I am sure will be done in this area!
One thing we as parents need to make sure we take other peoples views with a grain of salt unless they have experienced it themselves. I have had so many friends and family tell me what will 'fix' Harry. Most of these people are highly uneducated in the area and barely understand what Autism is. Not that this is a huge problem if once explained they try and gain an understanding. Stick to the professionals they are here for a reason. Keep talking to friends who are going through what you are, if they have advice listen to it but only use what you are comfortable with. For example I have recently started going 'organic'. Yes its the current buzz word, but I do believe it will more healthy for our family. The only problem is Harry eats no fruit, vegies or meat! Harry cannot go on this journey with us. Not yet anyway. We tried once when pressured by family to not offer the more 'junky' foods he prefered. Harry went nearly 2 weeks without eating. He drank only small amounts of milk. In future I will listen to my mother instinct. I don't believe food, preservatives or additives gave Harry autism, therefore I am not going to stress that he is sometimes eating them. I will just continue to show appropriate eating and hope that as he gets older he will eat better foods. We can only get better from here.
On meeting Harry's clinical psychologist his view was very different and it made sense. He enlightened us about a process children go through when they are 12-24 months old. As they learn such a huge amount of information in such a small period of time and then they need to learn things like walking, talking, eating and socialising. An infants brain will 'temorarily' lose (or forget) information such as the colour red or what a spoon is. He says when a child is learning to walk it is quite normal for them to stop talking for a while as their brain is focused on the walking part. His view is that a 'normal' child will quickly relearn these things and it is never an issue but an autistic child's brain will lose too much information and not be able to regain it. Harry has required quite intense early intervention, speech therapy and occupational therapy to talk. His speech is still poor but we are lucky he continues to learn more all the time.
I watched a program on tv called 'The brain that changes itself", it is also a book by Norman Doidge. Basically it is about the brain's neuroplasticity especially young childrens and that scientists have believed that different parts of the brain are responsible for different things. Through rehabilitation of brain injury victims he has seen that this is not the case, the brain can relearn new things in different parts of the brain even if the original part of the brain has been damaged. He believes children with ASD have the potential to alter their condition and change the way their brain works. Very interesting reading. I guess I have seen some of this with Harry's early intervention and therapy. Whether this is a result of his brain changing or just helping it to learn is open to interpretation. He also talked about his belief that children with ASD have brains which are more maleable and are more elastic and stretchy so they actually process so much information at one time and this is why they can go into sensory overload. This also helps to explain why some children with ASD are classified as savants. They have an amazing ability to excel in a certain area, more than children without ASD. Their brains work differently and in some areas better. Is this the brains own mechanism to counteract the parts of the brain that are not working at their desired potential? Alot more research I am sure will be done in this area!
One thing we as parents need to make sure we take other peoples views with a grain of salt unless they have experienced it themselves. I have had so many friends and family tell me what will 'fix' Harry. Most of these people are highly uneducated in the area and barely understand what Autism is. Not that this is a huge problem if once explained they try and gain an understanding. Stick to the professionals they are here for a reason. Keep talking to friends who are going through what you are, if they have advice listen to it but only use what you are comfortable with. For example I have recently started going 'organic'. Yes its the current buzz word, but I do believe it will more healthy for our family. The only problem is Harry eats no fruit, vegies or meat! Harry cannot go on this journey with us. Not yet anyway. We tried once when pressured by family to not offer the more 'junky' foods he prefered. Harry went nearly 2 weeks without eating. He drank only small amounts of milk. In future I will listen to my mother instinct. I don't believe food, preservatives or additives gave Harry autism, therefore I am not going to stress that he is sometimes eating them. I will just continue to show appropriate eating and hope that as he gets older he will eat better foods. We can only get better from here.
Sunday, March 13, 2011
Coping with the sensory overload.
We didn't understand why Harry couldn't cope in certain situations. The situations varied, not usually the same, there was no constant we could pinpoint to make it obvious for us. This was inceredibly hard as until recently Harry could not talk. He was incredibly good with non verbal communication, so I knew when he wanted food or drink. But in unfamiliar settings it became downright scary. For at least a year I avoided all social contact with friends, some family and any playgroup. It was too hard and to be honest in was embarassing. I couldn't stand people staring at me and Harry and assuming I was doing something wrong. At the time I really had no idea it was sensory related. Loud noises would set him off- not all mind you it just depended on the day. Dirty hands and face were unacceptable and people touching the item he had fixated on at the time wouls send him into a fit. Mums would get downright cranky at me when I didn't make Harry share. Parents would always ask why I wasn't making Harry join in the 'group' when he was sitting quietly by himself playing. Harry didn't like people, especially in large groups. There was no way I was going to essentially torture my son so these parents felt placated that I was 'teaching' Harry something they felt I should teach him
We were finally referred to a paediatric occupational therapist who specialised in autism. It completely opened our eyes. We found strategies for dealing with some of the situations. Harry needs 'down time' alone. It is perfectly acceptable for him to sit in his room and watch a video. He doesn't get overstimulated - normal living does this - it has the opposite effect it helps calm him and regulate his body. We brought him an iPad using Harrys Facshia funding. We can take his regulator with us anywhere. He can focus on one thing and stay calm in highly stressful situations and environments. He can watch movies, listen to music and play repetitive games which he adores. He has become a whiz at.mix and match and has a fantatsic memory!
It is amazing how much you learn about yourself once you experience life differently. I have found I was very judgemental of other mothers and their children. I would classify children as naughty, rude, violent and parents as useless and lazy. Without ever thinking there may have been an element to the situation I didn't know about. That maybe there was more to the child than just being naughty. I urge all parents to not judge on first appearances. Certainly don't allow your child to be hurt or pushed aside, but at times some children need a bit of extra care to help stay calm and some lee way to participate appropriatley in a situation.
We were finally referred to a paediatric occupational therapist who specialised in autism. It completely opened our eyes. We found strategies for dealing with some of the situations. Harry needs 'down time' alone. It is perfectly acceptable for him to sit in his room and watch a video. He doesn't get overstimulated - normal living does this - it has the opposite effect it helps calm him and regulate his body. We brought him an iPad using Harrys Facshia funding. We can take his regulator with us anywhere. He can focus on one thing and stay calm in highly stressful situations and environments. He can watch movies, listen to music and play repetitive games which he adores. He has become a whiz at.mix and match and has a fantatsic memory!
It is amazing how much you learn about yourself once you experience life differently. I have found I was very judgemental of other mothers and their children. I would classify children as naughty, rude, violent and parents as useless and lazy. Without ever thinking there may have been an element to the situation I didn't know about. That maybe there was more to the child than just being naughty. I urge all parents to not judge on first appearances. Certainly don't allow your child to be hurt or pushed aside, but at times some children need a bit of extra care to help stay calm and some lee way to participate appropriatley in a situation.
Monday, March 7, 2011
Time for a label
Both myself and my mother realised fairly quickly that Harry wasn't 'quite right'. Why was hard to pinpoint. We initially sought advice from friends in the form of "what do you think of Harry"? Mostly responses were he is fine, he is a boy and slower, his big brother must talk for him. I knew all of this wasn't correct. Getting a professional to listen to me also proved VERY difficult. I looked like a very young mum - despite being about 28 years old. No one took me seriously and assumed I couldn't discipline properly and that was why my son had meltdowns. They all said I obviously had a very strong bond with my child as he would communicate with only myself and I was the only one who could placate him when he was stressed. At the time I thought this was normal.
I was passed on to many 'professionals' who seemed to actually know nothing. They kept trying to change his behaviour when in fact he was quite well behaved. We now know he had sensory overload and this is why he did the things he did. I finally saw a psychologist who did an developmental assessment and at 2.5 years, poor Harry was sitting at 12-18 months along all areas. We quickly realised we had to treat him differently. Not in a preferetial way, but we had to remember that what we assumed he should understand was not the case. We had to continually remind ourselves to treat him like we would his younger cousin who was exactly 12 months younger!
Luckily I had my knowledge as a medical professional to help me. I knew who I wanted to see, and I knew no one could stop me seeing them. I sometimes had to demand to see people. Not take no for an answer. I finally saw the clinical psychologist who I had been dreaming of seeing for months. The best autism specialist in Newcastle. His books were shut but we had worked together previously so I was very lucky to have him see Harry. In our first session Harry went ballistic. It may have been the biggest meltdown he had ever done. The Psychologist said at the end "within the first 5 minutes I had diagnosed him with autism". Finally someone saw what we saw! The next session Harry was perfect. He made eye contact, did what he was directed to, smiled. The Psychologist was shocked but he said nothing explains the initial session. A diagnosis of PDD-NOS was given. (Pervasive development disorder - not otherwise specified). Or atypical autism.
I was passed on to many 'professionals' who seemed to actually know nothing. They kept trying to change his behaviour when in fact he was quite well behaved. We now know he had sensory overload and this is why he did the things he did. I finally saw a psychologist who did an developmental assessment and at 2.5 years, poor Harry was sitting at 12-18 months along all areas. We quickly realised we had to treat him differently. Not in a preferetial way, but we had to remember that what we assumed he should understand was not the case. We had to continually remind ourselves to treat him like we would his younger cousin who was exactly 12 months younger!
Luckily I had my knowledge as a medical professional to help me. I knew who I wanted to see, and I knew no one could stop me seeing them. I sometimes had to demand to see people. Not take no for an answer. I finally saw the clinical psychologist who I had been dreaming of seeing for months. The best autism specialist in Newcastle. His books were shut but we had worked together previously so I was very lucky to have him see Harry. In our first session Harry went ballistic. It may have been the biggest meltdown he had ever done. The Psychologist said at the end "within the first 5 minutes I had diagnosed him with autism". Finally someone saw what we saw! The next session Harry was perfect. He made eye contact, did what he was directed to, smiled. The Psychologist was shocked but he said nothing explains the initial session. A diagnosis of PDD-NOS was given. (Pervasive development disorder - not otherwise specified). Or atypical autism.
Thursday, January 20, 2011
The start of a new life.
Like all mothers, when I found I was pregnant for a second time I was excited! I had done this before. Only 2 years earlier. We had actually planned this baby, though conceiving was a cinch much to my husbands dismay. I was young and healthy. I had a normal bodyweight though if anything maybe a bit skinny, there was nothing to say this child wouldn't be perfect. We brought a new house, with 4 bedrooms and 2 bathrooms, so we all would fit nicely. I worked until I was 35 weeks, only part-time but I love what I do, and being a shift worker it was fairly easy to get care for my first son. I had friends who had children the same age as my first son and many girls at work who I could share pregnancy with. All was well in my world.
At 39 weeks gestation my waters broke and I was induced. 3 hours later I produced a beautiful little boy who was 3.1 kgs and had his fathers lovely olive skin. Harry. He was so well behaved. Like all second time mums I was scared that I was going to have a naughty toddler who was going to be fighting for my attention and a sleepless, ravenous newborn who screamed day and night. I got neither. The first fortnight took a bit of effort as we settled into a routine. Then this little baby breastfed every 3 hours and slept in between. He never cried more than a slight grizzle, and no one ever saw him awake till he was about 6 months old and he decided the world was interesting enough that he might give it his atention. He was a fussy eater when it came to solids but my toddler was also fussy. I didn't mind as this was just our world at the time. He met all his milestones, amazingly at the exact time his brother had met them. All was normal.
Then when he was 18 months old he got sick. We were away from home on holidays in Brisbane. Silly me didn't think to bring a thermometer or panadol. He felt hot, but he was still drinking and sleeping periodically, it wasn't until he wouldn't stop screaming we found a doctor in the little country town we were visiting and he had a double ear infection and tonsillitis and a temperature of over 41 degrees. Where we were staying our beds were away from the main house so we would put a baby monitor next to his bed and go and commune with other family during his sleep time. I regret that I didn't watch him and I wonder if he ever had seizures or an 'event' when he was sick and it went unnoticed. It was directly on this holiday that Harry stopped eating food and sleeping. He was never the same again.
The few words he used to say now remained mute. He became solely a milk drinker from a bottle till he was at least 2. He became disinterested in everything and everyone. The only exception was his bottle and 'wrap' which never left his side. My little man who was loving, cuddly, social, happy and oh so easy going had become my completely self absorbed child. Completely self concerned and self seeking and detached from everything around him. He became autistic.
At 39 weeks gestation my waters broke and I was induced. 3 hours later I produced a beautiful little boy who was 3.1 kgs and had his fathers lovely olive skin. Harry. He was so well behaved. Like all second time mums I was scared that I was going to have a naughty toddler who was going to be fighting for my attention and a sleepless, ravenous newborn who screamed day and night. I got neither. The first fortnight took a bit of effort as we settled into a routine. Then this little baby breastfed every 3 hours and slept in between. He never cried more than a slight grizzle, and no one ever saw him awake till he was about 6 months old and he decided the world was interesting enough that he might give it his atention. He was a fussy eater when it came to solids but my toddler was also fussy. I didn't mind as this was just our world at the time. He met all his milestones, amazingly at the exact time his brother had met them. All was normal.
Then when he was 18 months old he got sick. We were away from home on holidays in Brisbane. Silly me didn't think to bring a thermometer or panadol. He felt hot, but he was still drinking and sleeping periodically, it wasn't until he wouldn't stop screaming we found a doctor in the little country town we were visiting and he had a double ear infection and tonsillitis and a temperature of over 41 degrees. Where we were staying our beds were away from the main house so we would put a baby monitor next to his bed and go and commune with other family during his sleep time. I regret that I didn't watch him and I wonder if he ever had seizures or an 'event' when he was sick and it went unnoticed. It was directly on this holiday that Harry stopped eating food and sleeping. He was never the same again.
The few words he used to say now remained mute. He became solely a milk drinker from a bottle till he was at least 2. He became disinterested in everything and everyone. The only exception was his bottle and 'wrap' which never left his side. My little man who was loving, cuddly, social, happy and oh so easy going had become my completely self absorbed child. Completely self concerned and self seeking and detached from everything around him. He became autistic.
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