Phew. It has been one of those weeks with Amy and her autistic ways. She has had a wee head cold this week and this has triggered her big-time. I suppose none of us are on our best behaviour when we feel poorly. This is especially so for Amy.
A lot of her more hostile behaviours have exhibited themselves this week. At Kindy she was pushing, hitting, pinching and even attempted to bite another child. Her Kindy haven't seen her in full flight so it was kind of good she showed her true colours as such - especially as they (via the Ministry Of Education) are applying for a teachers aide for Amy when she moves into morning Kindy (around mid-May).
As her Mum, I can read Amy like a book. I can pre-empt a lot of her behaviour. In fact, managing a child with ASD is mainly about being several steps ahead of your child. Sometimes it is like living with some kind of a child-God. If conditions aren't set up in the way they want them, or people aren't responding in the way they'd like them too: they lose it big-time. Of course it's all a lot more involved than that. A lot of it has to do with the fact that the ASD child is unable to put his or herself into anothers shoes. This makes just about every social encounter very difficult.
Tuesday morning I went to the Nelson/Marlborough support group meeting for parents with ASD/Aspergers children. It's the third meeting I've been to. Yet this was the biggest one - there were approximately sixteen adults present. The other two times I took my daughter but this time I left her with a friend. Just as well as it was a rainy day and there were no children present. I am the newbie ASD parent on the block making Amy the youngest child with a diagnosis. Amazingly a lot of the children had a diagnosis made quite a lot later in life. However the founder of this particular support group set it up around twelve years ago when she her two children were both diagnosed with ASD. I am very lucky as a parent that there is so much support out there.
I stayed for an hour at the support group. It was very casual - just parents talking to one another. It was interesting meeting other parents. But like anything, just because I have something in common with someone else; it doesn't mean I'll click with everybody. Antenatal classes spring to mind - another situation where random people are thrown together because of a common thread.
I find talking to others who have some experience with autism can open up a big can of worms. There are so many theories around why it exists, for example. And every parent is going to differ on how they choose to manage their child with autism. Just in an hour the gluten/dairy-food topic came up, mainstream versus putting a child into a special education class (more for children with low-functioning autism) and when was the best time to tell their child they had autism/aspergers. (There are some lovely children's books around on the topic, apparently).
As I say, I am a newbie Mum of a child recently diagnosed with autism. Six months post-diagnosis and I am just getting my head around the support available. I'm taking it all One Day At A Time. I'm not ready to get into it too deeply just yet.
I have been reading excerpts from How to live with Autism and Asperger Syndrome: Practical Stratagies for parents and professionals by Chris Williams and Barry Wright this week - given to me by an early intervention teacher. It's very interesting but even all that information was a bit of autism-overload for me this week. I related and identified with a lot of what I read and this was both a relief and a bit upsetting. There are examples of children with autism and aspergers in the book and I found it hard seeing my daughter in those children. Especially older children, still struggling. I have tried not to think too much about Amy's future and to just work with what we know today. But I have been a bit churned up this week around Amy starting school in a years time. She will be mainstream but I am worried her social delays may cause a few problems for her (without Mummy holding her hand!). This is our aim for the next year: to get her prepared for school as best as we can.
I got an email from Autism New Zealand this week indicating that actress Jenny McCarthy was going to be on Oprah talking about her son who has autism. I watched the show but didn't agree or identify completely with the message coming through. No doubt there is some controversy around whether autism is something a child is born with - or whether it is brought on. Jenny strongly believes a vaccination caused her sons autism. She is also a big advocate for dairy and gluten being taken out of a diet for a child with autism. She's written a book about her story and does say that her ideas may not work for everyone - but it's worth a try.
Like I say, I'm not in a place for exploring autism too deeply right now. I don't actually care why my daughter has autism. The fact is she does! All my time goes into helping her socially. We play together all the time and I organise regular one-on-one play-dates. She also goes to Kindy in the afternoons and goes to Music once a week. The point is, she is out there socialising like any other preschooler. She just needs more guidance than some.
What I understand about autism - and all I need to really know for now - is she is simply socially delayed. Because Amy looks at things in detail, it takes a little longer for her to see the bigger picture. Yet she is moving forward in leaps and bounds right now. Sure, a lot of inappropriate behaviour happens but she is getting there. She has friends, seeks out other children and has fun socially. That tells me she is doing okay.
I'm choosing to just deal with what is right in front of us instead of focusing on why-did-this-happen. This week has been proof to me that too much information about autism just does my head in. My fight against autism is simply looking at my child and working out what she needs to achieve to "fit in" socially. A lot of my time and energy is centred around play. I get down on her level, and spend a lot of my day on the floor when we are at home and we play, play, play. Sometimes Amy will initate play. For a long time she would simply line up her toys in rows. But now the toys are coming out of their rows and are starting to talk to each other. Other times I will set up more complex games such as using play money and setting up a toy shop. The more we repeat these games, the more she starts to play them on her own, with less guidance. Her play is evolving and that is all the proof that I need that her social world is shifting.
Thursday, February 26, 2009
Wednesday, February 18, 2009
Progress six months post-diagnosis
Amy was diagnosed with ASD in August 2008. She started Kindy a week or two ahead of getting a diagnosis and I warned the teachers immediately that she was probably on "the spectrum". After several months of "shadowing" Amy at Playgroup, because of some of her anti-social behaviours, I was a little anxious as to how she might go at Kindy.
Amazingly she took to Kindy like a duck to water. The teachers have worked so well with her right from the start, encouraging eye contact and gently coaxing her into "circle time". She started the first term sitting in a yellow chair on the outskirts of circle time, observing the other children. Her good friend from the same street and former Playgroup, started Kindy just three weeks later and joined her on another yellow chair! The teachers started moving the girls chairs closer and closer so they were virtually in the circle on their chairs. One of the teacher's suggested it was time for the girls to join the circle one day without the chairs and Amy has never looked back. She joins in the actions now in circle time and often sings the songs at home.
Amy is thriving at Kindy. She loves the space, the range of play areas available and the gentle yet consistent guidance she is given by the teachers. She has made one new friend at Kindy - a little boy and has bonded with a couple of the teachers. She is very active and often plays in groups of four or five. She spends a lot of time roaming around Kindy with her neighbourhood friend. When I was on parent help the other day I overheard them having a wee conversation in which they were asking each other their names which was quite sweet.
Amy's confidence at Kindy just grows and grows and this is showing in other areas of her social world. She was in gymnastics classes for a couple of terms last year and used to just do her own thing, totally oblivious to what was going on in the classes. By the end of her last term she was listening to instructions and participating in more of the class. At the supermarket it seemed as if Amy didn't hear the cashiers talking to her. When they'd ask her a question she seemed a million miles away. Yet these days they cannot shut her up! and she happily helps the cashiers scan the groceries while giving a wee commentary on what each item is for.
Amy now says hello and goodbye to guests coming into our house although a little prompting is still needed from time to time. Eye contact is a lot more frequent. For so long she used to just carry on with whatever activity she was engrossed in, seemingly disinterested in who had just walked through the door. Now she will approach visitors not long after they have entered our home, and will chat easily with them.
Amy has had two regular playdates since she was eighteen months old. These continue and both families are understanding of her diagnosis. There are often issues on playdates yet Amy has improved considerably over the last few months. This is thanks to Kindy and the support of an early intervention teacher and child development services (CDS).
We've used a few social stories over the last few months around choosing an activity to do, toileting and a routine while on holiday (in a different environment). All of the stories worked very well proving that Amy is a visual learner. The what-shall-I-do-now visual cards in which Amy could select something to do from six photographs of toys and activities in her bedroom worked well. Often Amy is at a loss as to what to do next and this has helped her think more about what she'd like to play. Lately she says she wants to play such-and-such without looking at the visual cards which is great.
At the end of last year she was using a potty for wees but wouldn't go near the toilet. However with the use of a toileting social story, she made the step from potty to toilet and is now nappy-free during the day - except if a poo is obviously on the way. This was achieved with a lot of patience and prompting with many of her toys at home going to the toilet ahead of her. Now she is increasingly going to the loo by herself although she needs to be reminded a lot of the time. We have yet to get her on the toilet to do a poo.
We were away for a month over Christmas catching up with family. In Ruby Bay we had our own little cottage and this worked really well for Amy. With the use of a routine social story, our days had some structure to them. Amy enjoyed making choices on what we could do next and also recording via visual cards what we'd done in the day. Having our own cottage meant Amy was able to escape when she needed a break from the main house. Even with her cousin staying in the other house, Amy frequently retreated to the cottage to play with her toys and to have some me-time.
The proof was in the pudding when we stayed out at Ruby Bay again a few weeks ago but stayed in the main house without the routine visual cards. It was harder work for me as Amy found it hard to relax without a small space she could retreat to. (She could have gone to our bedroom but didn't seem interested). Without the routine visual cards our days seemed disorganised and this upset the apple cart for both Amy and myself. Bottom line: the routine visual cards will be coming on all trips from now on!
We also caught up with family in Auckland for a week in the New Year and although it was a lot of fun (as there were four children under six in the same house), it was rather stressful for myself and Amy. Amy's need for space couldn't be met as were staying in quite a small house. Two of the other children were particularly loud and are still a WIP around sharing themselves and this triggered Amy on many occasions. She was yelling, kicking and hitting a lot more than usual. I know it doesn't take much to over-stimulate her so I was able to take her out one afternoon to a cafe - just her and I. This trip proved to me that on longer trips, it's better we have our own accomodation. One or two nights are okay with other families but any more than that is pushing it for everyone.
Not everyone of course understands ASD and I have been very appreciative of the understanding and unconditional love Amy has received over the last six months. She knows who she is safe with. It is often her fear and uncertainty in social situations that cause her to retaliate in what is typically unacceptable behaviour. But over time, as my husband and I decipher what is ASD behaviour from what is preschool behaviour - or even her personality; we are able to educate others that interact with her frequently. I feel the greater understanding of ASD with those Amy knows has caused her to relax a lot more around them. Like any child, she just wants to be accepted and loved for who she is.
Overall, Amy is moving forward in leaps and bounds. When she first started Kindy she was parroting a lot and speaking only a few words. Now she speaks in sentences and although she still parrots a bit, she also constructs her own sentences. She is able to converse and answer simple questions and continually surprises us with her amazing memory. I have to thank Kindy, early intervention services and CDS for her progress. I know my husband and I have contributed to these very positive changes but as they say - it takes a village to raise a child - particularly one with ASD!
Amazingly she took to Kindy like a duck to water. The teachers have worked so well with her right from the start, encouraging eye contact and gently coaxing her into "circle time". She started the first term sitting in a yellow chair on the outskirts of circle time, observing the other children. Her good friend from the same street and former Playgroup, started Kindy just three weeks later and joined her on another yellow chair! The teachers started moving the girls chairs closer and closer so they were virtually in the circle on their chairs. One of the teacher's suggested it was time for the girls to join the circle one day without the chairs and Amy has never looked back. She joins in the actions now in circle time and often sings the songs at home.
Amy is thriving at Kindy. She loves the space, the range of play areas available and the gentle yet consistent guidance she is given by the teachers. She has made one new friend at Kindy - a little boy and has bonded with a couple of the teachers. She is very active and often plays in groups of four or five. She spends a lot of time roaming around Kindy with her neighbourhood friend. When I was on parent help the other day I overheard them having a wee conversation in which they were asking each other their names which was quite sweet.
Amy's confidence at Kindy just grows and grows and this is showing in other areas of her social world. She was in gymnastics classes for a couple of terms last year and used to just do her own thing, totally oblivious to what was going on in the classes. By the end of her last term she was listening to instructions and participating in more of the class. At the supermarket it seemed as if Amy didn't hear the cashiers talking to her. When they'd ask her a question she seemed a million miles away. Yet these days they cannot shut her up! and she happily helps the cashiers scan the groceries while giving a wee commentary on what each item is for.
Amy now says hello and goodbye to guests coming into our house although a little prompting is still needed from time to time. Eye contact is a lot more frequent. For so long she used to just carry on with whatever activity she was engrossed in, seemingly disinterested in who had just walked through the door. Now she will approach visitors not long after they have entered our home, and will chat easily with them.
Amy has had two regular playdates since she was eighteen months old. These continue and both families are understanding of her diagnosis. There are often issues on playdates yet Amy has improved considerably over the last few months. This is thanks to Kindy and the support of an early intervention teacher and child development services (CDS).
We've used a few social stories over the last few months around choosing an activity to do, toileting and a routine while on holiday (in a different environment). All of the stories worked very well proving that Amy is a visual learner. The what-shall-I-do-now visual cards in which Amy could select something to do from six photographs of toys and activities in her bedroom worked well. Often Amy is at a loss as to what to do next and this has helped her think more about what she'd like to play. Lately she says she wants to play such-and-such without looking at the visual cards which is great.
At the end of last year she was using a potty for wees but wouldn't go near the toilet. However with the use of a toileting social story, she made the step from potty to toilet and is now nappy-free during the day - except if a poo is obviously on the way. This was achieved with a lot of patience and prompting with many of her toys at home going to the toilet ahead of her. Now she is increasingly going to the loo by herself although she needs to be reminded a lot of the time. We have yet to get her on the toilet to do a poo.
We were away for a month over Christmas catching up with family. In Ruby Bay we had our own little cottage and this worked really well for Amy. With the use of a routine social story, our days had some structure to them. Amy enjoyed making choices on what we could do next and also recording via visual cards what we'd done in the day. Having our own cottage meant Amy was able to escape when she needed a break from the main house. Even with her cousin staying in the other house, Amy frequently retreated to the cottage to play with her toys and to have some me-time.
The proof was in the pudding when we stayed out at Ruby Bay again a few weeks ago but stayed in the main house without the routine visual cards. It was harder work for me as Amy found it hard to relax without a small space she could retreat to. (She could have gone to our bedroom but didn't seem interested). Without the routine visual cards our days seemed disorganised and this upset the apple cart for both Amy and myself. Bottom line: the routine visual cards will be coming on all trips from now on!
We also caught up with family in Auckland for a week in the New Year and although it was a lot of fun (as there were four children under six in the same house), it was rather stressful for myself and Amy. Amy's need for space couldn't be met as were staying in quite a small house. Two of the other children were particularly loud and are still a WIP around sharing themselves and this triggered Amy on many occasions. She was yelling, kicking and hitting a lot more than usual. I know it doesn't take much to over-stimulate her so I was able to take her out one afternoon to a cafe - just her and I. This trip proved to me that on longer trips, it's better we have our own accomodation. One or two nights are okay with other families but any more than that is pushing it for everyone.
Not everyone of course understands ASD and I have been very appreciative of the understanding and unconditional love Amy has received over the last six months. She knows who she is safe with. It is often her fear and uncertainty in social situations that cause her to retaliate in what is typically unacceptable behaviour. But over time, as my husband and I decipher what is ASD behaviour from what is preschool behaviour - or even her personality; we are able to educate others that interact with her frequently. I feel the greater understanding of ASD with those Amy knows has caused her to relax a lot more around them. Like any child, she just wants to be accepted and loved for who she is.
Overall, Amy is moving forward in leaps and bounds. When she first started Kindy she was parroting a lot and speaking only a few words. Now she speaks in sentences and although she still parrots a bit, she also constructs her own sentences. She is able to converse and answer simple questions and continually surprises us with her amazing memory. I have to thank Kindy, early intervention services and CDS for her progress. I know my husband and I have contributed to these very positive changes but as they say - it takes a village to raise a child - particularly one with ASD!
Wednesday, February 11, 2009
Six months post-diagnosis
After Amy was diagnosed with ASD it was kind of like "Now what?" for us as parents. We were given a folder from Autism New Zealand from the paediatrician. It was filled with a wealth of information and I wasn't sure where to begin. However once I started looking out there at what was available this big new world geared towards helping those with autism began to emerge.
The first thing I did was attend a support meeting at a local cafe. These are organised nationally through-out New Zealand by Autism New Zealand. However it was just me and another newbie who attended. It was great to meet another Mum with a child with autism. Yet it was quite disappointing that we were the only ones who turned up. I tried again a month later and this time two different Mums turned up. They both had children with ASD who were both older than Amy yet it was interesting to hear where they were at a couple of years down the track from we were. I will be going to another meeting at the end of February (they are held monthly in Nelson).
Late last year I also attended a Mulled Wine and Massage evening for parents of autistic children. The idea being to learn simple foot and hand massages to pass on to our children. This was organised by Autism New Zealand in conjunction with Altogether Autism. It was there that I met a Mum whose daughter was exactly the same age as Amy, also diagnosed with mild-ASD. There seemed to be so many parallels between our daughters that it was only natural to exchange phone numbers. The girls had a Playdate over the Christmas holidays for a couple of hours out at my Mum's in Ruby Bay and it was interesting to see how they related to one another. Amy was more verbal than the other girl but she is also more aggressive - kicking, pushing and hitting as she often does when she is overwhelmed/overstimulated and generally just over a situation. But all in all the girls got on quite well.
I found out through the paediatrician that we were eligible for both a child disability allowance (CDA) and respite care. I went into WINZ, filled in some forms, and took Amy's diagnosis notes with me and we were immediately signed up for $81.46 a fortnight. This is not means-tested. The CDA is proving to be very useful for all the additional resources and courses that seem to part and parcel of having an ASD child.
We got a referral regarding respite care through the paediatrician and within weeks a letter from Support Works indicating they were coming round for an assessment. This is simply someone to give us some help with Amy. As any parent of a child with ASD will attest; they are very exhausting children to care for as so much energy is needed to guide and support them. A woman from Support Works came into our home, asked quite a few questions and then granted us twenty hours of respite care for a year.
All we had to do was elect someone we could leave Amy with. We elected our neighbours who live right behind us. They have three children aged seven - eleven years of age and the Mum is a teacher's aide who is currently looking after a severely autistic child at the local primary school. It's perfect. Amy loves going nextdoor (they have a trampoline, a sheep, rabbits, a dog and a cat) and when I left her for her first half hour alone last week I could hear her chattering away non-stop to the Mum. I have a form that is to be sent off at the end of the year clarifying how many hours were used. Our neighbours will be reimbursed at this point.
We will use respite care so we can go out as a couple and for any circumstances in which we need to leave Amy with someone else. Although there are a few adults she knows, most have children the same age or younger which means it is difficult for whoever is watching her.
Child Development Services (CDS) were the first organisation post-diagnosis to make contact. The paediatrician also referred us to them. One of the staff came into our home a couple of times to assess where we were at and what further help might be needed. It was agreed that some help in the Kindergarten would be most benefical.
Amy started Kindergarten about the time we were mid-referral to getting her an appointment with a paediatrician. Once the diagnosis was made and Amy had been at Kindy for a couple of months at Kindy, the teachers were on to it writing a letter to Special Education so an early intervention teacher could come into the picture. They had to kerp a behavioural diary and just after a few weeks at Kindy it was evident that were a few social issues that were of concern.
The early intervention teacher has been into our home three times, asking questions about Amy and playing with her to see she where she is at. She has started observing her at Kindy on a weekly basis in order to determine whether or not she will need a teacher's aid at morning Kindy. She is doing so very well at afternoon Kindy but the teachers fear a longer period of time may result in some disruption from Amy towards the other children when she moves into morning Kindy (which should be within the next three or four months).
Mid-March I am meeting with the Head Teacher at Kindy, the woman from Child Development Services and the early intervention teacher to form a plan for 2009. I am also doing two day-long courses run by Autism New Zealand in March (they cost $30 each per person). The first is called Understanding the Autistic Spectrum: Implications for Learning and the second is Introduction to Advanced Strategies for Autism Spectrum Disorders. I have also requested to do the Early Bird programme which is free for parents of under fives - to get them ready for school. I had to send off an expression of interest form - there isn't a guarantee that we'll get to do that one as it is dependant on numbers.
We recently joined Autism New Zealand (for a $20 donation for a year) which means we will be in the loop regarding upcoming courses, support group meetings, as well as access to an extensive libary of books, audio tapes and videos/DVDs.
Really the last six months are a bit of a blur. It has taken me a while to get my head around whose who with all the specialists - as well as deciphering what their roles are. But it's all starting to make sense. They all want only the best for Amy. We are lucky that she is not yet four years old and she is entrenched in the system. She may not understand what is going on around her yet at the same time, Amy has felt more secure in her social world thus far with the support of all involved.
The first thing I did was attend a support meeting at a local cafe. These are organised nationally through-out New Zealand by Autism New Zealand. However it was just me and another newbie who attended. It was great to meet another Mum with a child with autism. Yet it was quite disappointing that we were the only ones who turned up. I tried again a month later and this time two different Mums turned up. They both had children with ASD who were both older than Amy yet it was interesting to hear where they were at a couple of years down the track from we were. I will be going to another meeting at the end of February (they are held monthly in Nelson).
Late last year I also attended a Mulled Wine and Massage evening for parents of autistic children. The idea being to learn simple foot and hand massages to pass on to our children. This was organised by Autism New Zealand in conjunction with Altogether Autism. It was there that I met a Mum whose daughter was exactly the same age as Amy, also diagnosed with mild-ASD. There seemed to be so many parallels between our daughters that it was only natural to exchange phone numbers. The girls had a Playdate over the Christmas holidays for a couple of hours out at my Mum's in Ruby Bay and it was interesting to see how they related to one another. Amy was more verbal than the other girl but she is also more aggressive - kicking, pushing and hitting as she often does when she is overwhelmed/overstimulated and generally just over a situation. But all in all the girls got on quite well.
I found out through the paediatrician that we were eligible for both a child disability allowance (CDA) and respite care. I went into WINZ, filled in some forms, and took Amy's diagnosis notes with me and we were immediately signed up for $81.46 a fortnight. This is not means-tested. The CDA is proving to be very useful for all the additional resources and courses that seem to part and parcel of having an ASD child.
We got a referral regarding respite care through the paediatrician and within weeks a letter from Support Works indicating they were coming round for an assessment. This is simply someone to give us some help with Amy. As any parent of a child with ASD will attest; they are very exhausting children to care for as so much energy is needed to guide and support them. A woman from Support Works came into our home, asked quite a few questions and then granted us twenty hours of respite care for a year.
All we had to do was elect someone we could leave Amy with. We elected our neighbours who live right behind us. They have three children aged seven - eleven years of age and the Mum is a teacher's aide who is currently looking after a severely autistic child at the local primary school. It's perfect. Amy loves going nextdoor (they have a trampoline, a sheep, rabbits, a dog and a cat) and when I left her for her first half hour alone last week I could hear her chattering away non-stop to the Mum. I have a form that is to be sent off at the end of the year clarifying how many hours were used. Our neighbours will be reimbursed at this point.
We will use respite care so we can go out as a couple and for any circumstances in which we need to leave Amy with someone else. Although there are a few adults she knows, most have children the same age or younger which means it is difficult for whoever is watching her.
Child Development Services (CDS) were the first organisation post-diagnosis to make contact. The paediatrician also referred us to them. One of the staff came into our home a couple of times to assess where we were at and what further help might be needed. It was agreed that some help in the Kindergarten would be most benefical.
Amy started Kindergarten about the time we were mid-referral to getting her an appointment with a paediatrician. Once the diagnosis was made and Amy had been at Kindy for a couple of months at Kindy, the teachers were on to it writing a letter to Special Education so an early intervention teacher could come into the picture. They had to kerp a behavioural diary and just after a few weeks at Kindy it was evident that were a few social issues that were of concern.
The early intervention teacher has been into our home three times, asking questions about Amy and playing with her to see she where she is at. She has started observing her at Kindy on a weekly basis in order to determine whether or not she will need a teacher's aid at morning Kindy. She is doing so very well at afternoon Kindy but the teachers fear a longer period of time may result in some disruption from Amy towards the other children when she moves into morning Kindy (which should be within the next three or four months).
Mid-March I am meeting with the Head Teacher at Kindy, the woman from Child Development Services and the early intervention teacher to form a plan for 2009. I am also doing two day-long courses run by Autism New Zealand in March (they cost $30 each per person). The first is called Understanding the Autistic Spectrum: Implications for Learning and the second is Introduction to Advanced Strategies for Autism Spectrum Disorders. I have also requested to do the Early Bird programme which is free for parents of under fives - to get them ready for school. I had to send off an expression of interest form - there isn't a guarantee that we'll get to do that one as it is dependant on numbers.
We recently joined Autism New Zealand (for a $20 donation for a year) which means we will be in the loop regarding upcoming courses, support group meetings, as well as access to an extensive libary of books, audio tapes and videos/DVDs.
Really the last six months are a bit of a blur. It has taken me a while to get my head around whose who with all the specialists - as well as deciphering what their roles are. But it's all starting to make sense. They all want only the best for Amy. We are lucky that she is not yet four years old and she is entrenched in the system. She may not understand what is going on around her yet at the same time, Amy has felt more secure in her social world thus far with the support of all involved.
Sunday, February 8, 2009
Getting a diagnosis
It was when Amy was three years old that the alarm bells really started ringing with me that something was amiss with her socially. I had worked with a boy with Aspergers in Vancouver, Canada many years ago and the older Amy got, the more her behaviour seemed to match his.
Generally children under three play in "parallel play" - which means they play alongside each other, but not with each other. So although I'd noted some slightly concerning social behaviours with Amy before the age of three such as a lack of making eye contact and a general disinterest in children and adults around her, I wasn't terribly worried.
Around the age of three it was obvious to me that socially she was struggling. She was starting to show an interest in other children yet seemed to have a very enormous air bubble around her that most children were naturally quite oblivious to.
This caused a lot of problems at Playgroup in which there were around fifty families in a very crowded setting. Toddlers who roamed through her area of play would often get a huge push because they were in her space. The same behaviour occured in any settings where there were other children - playgrounds, playdates - anywhere. With this she seemed unable to pick up other children's body language and would often invade their space or cause havoc in a game that was going on that she didn't understand. This would typically result in the child involved in getting frustrated and Amy would respond to the frustration by hitting, shoving, or kicking. Her speech was delayed and this only added fuel to the fire.
The only way I could make Playgroup work was by "shadowing" her and pre-empting her behaviour. It was suffocating for Amy and exhausting for me. We tried sticker charts to reinforce positive behaviour but it was questionable as to whether that even worked. Basically I ended up leaving quite early most visits from three years of age onwards as soon as any of her "negative" behaviour occurred. She'd been going to the same Playgoup from the age of six months as well as weekly Music sessions and Playdates. This wasn't about a child who wasn't used to being in a group of children.
After several weeks of this behaviour at Playgroup The Head Teacher there agreed with me that I should get Amy checked out. The first step was going to Plunket for an assessment. She was due for one anyway since she was three years old at the time. The Plunket nurse agreed I should explore things further and wrote a letter to our family Dr. The family Dr also agreed there were issues and referred Amy to the Paediatric Department at Nelson Hospital. It took a few months to get an appointment, but at three years and five months Amy was assessed and consequently diagnosed with a mild form ASD. (autism spectrum disorder). This was in August 2008.
The appointment was about an hour and a half long and entailed me answering lots of questions. I knew she was on the high-end of "The Spectrum" (as it is called) for autism - meaning that she didn't have all the characteristics under the autism umbrella and that developmentally she was right on track, if not above average with learning the alphabet, numbers and colours for instance. If her speech hadn't have been delayed she would have been diagnosed with Aspergers.
Amy also went to audiology around the time of her diagnosis being made where her hearing was deemed to be almost perfect. But the test wasn't completed as it was quite an intense half hour for any three year old. She'll be going back sometime soon for another test. There is nothing to worry about with her hearing at this point.
Amy started at Kindy around the same time as getting a diagnosis. She was close to three and a half years old and thanks to her diagnosis and the support of her teachers, she is thriving at Kindy.
Generally children under three play in "parallel play" - which means they play alongside each other, but not with each other. So although I'd noted some slightly concerning social behaviours with Amy before the age of three such as a lack of making eye contact and a general disinterest in children and adults around her, I wasn't terribly worried.
Around the age of three it was obvious to me that socially she was struggling. She was starting to show an interest in other children yet seemed to have a very enormous air bubble around her that most children were naturally quite oblivious to.
This caused a lot of problems at Playgroup in which there were around fifty families in a very crowded setting. Toddlers who roamed through her area of play would often get a huge push because they were in her space. The same behaviour occured in any settings where there were other children - playgrounds, playdates - anywhere. With this she seemed unable to pick up other children's body language and would often invade their space or cause havoc in a game that was going on that she didn't understand. This would typically result in the child involved in getting frustrated and Amy would respond to the frustration by hitting, shoving, or kicking. Her speech was delayed and this only added fuel to the fire.
The only way I could make Playgroup work was by "shadowing" her and pre-empting her behaviour. It was suffocating for Amy and exhausting for me. We tried sticker charts to reinforce positive behaviour but it was questionable as to whether that even worked. Basically I ended up leaving quite early most visits from three years of age onwards as soon as any of her "negative" behaviour occurred. She'd been going to the same Playgoup from the age of six months as well as weekly Music sessions and Playdates. This wasn't about a child who wasn't used to being in a group of children.
After several weeks of this behaviour at Playgroup The Head Teacher there agreed with me that I should get Amy checked out. The first step was going to Plunket for an assessment. She was due for one anyway since she was three years old at the time. The Plunket nurse agreed I should explore things further and wrote a letter to our family Dr. The family Dr also agreed there were issues and referred Amy to the Paediatric Department at Nelson Hospital. It took a few months to get an appointment, but at three years and five months Amy was assessed and consequently diagnosed with a mild form ASD. (autism spectrum disorder). This was in August 2008.
The appointment was about an hour and a half long and entailed me answering lots of questions. I knew she was on the high-end of "The Spectrum" (as it is called) for autism - meaning that she didn't have all the characteristics under the autism umbrella and that developmentally she was right on track, if not above average with learning the alphabet, numbers and colours for instance. If her speech hadn't have been delayed she would have been diagnosed with Aspergers.
Amy also went to audiology around the time of her diagnosis being made where her hearing was deemed to be almost perfect. But the test wasn't completed as it was quite an intense half hour for any three year old. She'll be going back sometime soon for another test. There is nothing to worry about with her hearing at this point.
Amy started at Kindy around the same time as getting a diagnosis. She was close to three and a half years old and thanks to her diagnosis and the support of her teachers, she is thriving at Kindy.
Saturday, February 7, 2009
Amy's back-story
Right from the start Amy has needed a lot of skin contact from me. She was breast-fed til she was three years old and I knew it was more for comfort than food for probably the last couple of years. As a newborn she slept very well then around the age of four months she stopped sucking her thumb and she lost her ability to self-sooth. Things were never the same again in the sleep department.
For many tiresome months I attempted putting her back in the cot after coaxing her to a settled state on the couch that was in her bedroom. But she would often wake just two hours later, seeking more comfort. I researched and got lots of advice around sleep issues then finally decided to give her what she was asking for - the warm of her Mum's body at night.
I have believed all the way through that Amy has needed me close to reassure her that all is okay. It is now, six months after Amy's diagnosis of ASD (autism spectrum disorder), that her strong needs for comfort and support from baby to preschooler make sense. Autistic children have trouble regulating their emotions and battle with high anxiety. I always thought as a baby Amy was struggling with some kind of anxiety and was afraid of being left alone. Crying it out to force her to come to grips with it all and face her fears felt so, so wrong, But I did try it only to have Amy get herself so worked up that it took hours to settle her down again. So I did the opposite of what is recommended by many, and allowed her to have as much support as she needed from me as her Mum - day and night. I'm glad as I did as now at almost four years of age she is sleeping through the night a few times a week. It hasn't been an easy road; but it has been the right one for Amy.
Amy was a baby who wouldn't go to just anyone. She clung to her Mum from a very early age. However as soon as she started walking (at the age of twelve months) it was clear she was quite the adventurer. Over time it was also apparent that she more interested in her surrounds than people. None of her toys have ever been a waste of money!
When our antenatal class met for coffee dates Amy The Toddler would be off exploring while the other children pottered around, not interacting, but looking at each other with interest. She was always on a quest and happy doing her own thing. When her peers were starting to stay "hi" and wave bye-bye, Amy seemed oblivious that both children and adults around her were attempting to make a connection with her.
Visiting the supermarket with Amy The Toddler often resulted in no response from her when the check-out lady asked her a question. As was typical of Amy at that age, she would look into the distance as if she hadn't heard anything. Often it was remarked that she was "shy." But I knew she wasn't. With the confidence she had exploring I knew that it was more disinterest than shyness. She just didn't seem to want to connect with those around her.
I started two regular playdates for Amy around the age of eighteen months. I thought perhaps the one-on-one playdates might encourage her to connect socially with some same-aged peers. I also thought we needed to build up some support systems around us should Amy need to be left with someone else. For quite some time I did child swaps with the other two Mums. I think it did Amy a world of good to get to know two other little people at quite a young age. She now at almost four years of age has two good friends as well as a handful of other same-aged peers she sees frequently.
Around six months of age Amy started going to Music classes and to Playgroup. As soon as she could crawl she was off exploring. Once again she was more interested in her surrounds than the other children. After months of chasing her back into the circle at Music group she started to grasp the concept and join in circle time. She came to love the songs, the dancing and the musical instruments. However half an hour was often a stretch for her and she made it clear when she'd had enough - it wasn't hard to read when she was overstimulated.
We enroled Amy at the local Kindy at two years of age, expecting her to get in at three. However there was quite a long waiting list at the time and she didn't get in til she was three and a half. It was obvious that she had out-grown Playgroup at three years and this was illustrated by her behaviour. It seemed whenever a child entered her space (which is an air-bubble of forever varying size!), she would push, hit or kick that child. Eventually this became a habit and whenever Amy saw a child, smaller than herself, she would automatically lash out. The only thing I could do to monitor her behaviour was to "shadow" her around Playgroup. We tried sticker charts to reinforce good behaviour ie: no pushing/hitting/kicking at the end of a session. Telling her not to push/hit/kick resulted in a blank look. We'd say "Be nice to people and animals" and she'd repeat the words yet didn't seem to understand that she was actually hurting other children. Explaining children felt sad when she hurt them didn't register for a while though thanks to a great book I found in the library When I Feel Sad, Amy does have some comprehension of why she and also others might feel sad.
Our attempts at controlling her behaviour at Playgroup didn't transfer to other environments so it seemed the message got lost. eg: she would still strike out at a random child in the playground and lashed out at one of her friends younger siblings for many, many months.
The family cat also went through his own share of torment. "Nice pats" and "gentle" seemed like wasted words for a very long time. Hurting others almost seemed to be something she found funny at times; it was sometimes more than a form of self-defense. She lashed out at us, her parents, as often she was angry and unable to express that. We've been encouraging her to "use her words" for a very long time, and now she is starting to say "I am cross" and express herself more. To deal with the hostile behaviour we tried time-outs which often resulted in Amy purposefully peeing herself in her time-out spot. If we put her in the hall she would scream until she got herself really worked up and at the same time wasn't able to comprehend why she'd gone out into the hall. Quiet time in her room was and still is the only form of discipline that seems to work - apart from distraction which I would say would be the parent of an autistic childs key weapon!
Since starting Kindy at the age of three and a half, Amy has made some huge improvements in her behaviour. A change was very good for her as were consistent rules and children older than herself that were able to role-model appropriate social behaviours. She stopped consistently teasing the cat, and laid off her friend's younger sibling and stopped targeting toddlers out there.
However six months down the track at Kindy, Amy's peers have changed so that she is now one of the eldest children in the afternoon sessions. She is clearly bored and a bit lost without the social guidance she needs from children a bit older than herself. She will be moving into morning Kindy in May which I think will be very good for her. At the moment she is acting out at Kindy because the three year olds there are just as socially inept as she is! There are not many children there who are able to initate play. This has brought out some of her extreme behaviour that we haven't seen for around six months. But luckily one of her old friends goes to Kindy and the girls tend to hang together a lot.
Right from the start I have followed Amy's lead. I knew she was perhaps wired differently to other kids. But I did what felt right for her/us - and didn't follow any traditional, Western parenting guidelines. A lot of it felt wrong with Amy and I didn't agree with it. I didn't enjoy the age comparisons that came with antenatal class catch-ups and eventually the group fizzled out anyway - though we still catch up every now and then. It seemed if your child didn't sleep through the night at six weeks, wasn't toilet-trained by two, or in a big bed, sleeping on her own as early as possible - things weren't faring too well. I never felt comfortable with the one-size fits all kind of parenting and Amy's needs certainly reinforced this for me.
I had worked as a nanny with a boy with Aspergers for two years in Canada many years ago. The older Amy got, the more I thought how alike this boy she was. At eighteen months her social disinterest was highly evident. Her regular playdates with the two girls changed this and eventually she became more interested in interacting with other children. But there were issues. Not just with the social stuff; it was also the way she was at home. She resisted toileting training for a long time. We often went two steps forward and one back. There was no picking the right time because she was "ready." There was a lot of coaxing and pursuading involved. Lollies didn't work nor did stickers. She just wasn't making the connection. Although we finally got her on the potty to do wees, it wasn't until we used a social story that she graduated to the toilet.
Amy was a late-talker. She moaned and groaned to us even as a toddler and often would drag us around by the hand if she wanted something. It seemed to frustrate both her and us that she wasn't able to verbalise her needs. This didn't help on the kicking/hitting and pushing front. One time when visiting some friends of ours who had three boys at the time (they now have four); the youngest came out of the room bawling with a very clear bite-mark on his arm. Amy was pre-verbal at the time, around two years of age and in tears herself. No adult was in the room with her yet it was obvious to us that one of the boys had tried to take her toy dog off her. She didn't know how to say no, felt overwhelmed and bit the boy. Not acceptable behaviour of course - but understandable.
Instructions had to and still have to be broken down to Amy's level. I cannot say when I thought there was something wrong. If anything it just became more and more evident that she was wired a particular way and I knew not many people understood that - and that I wasn't been a paranoid first-time Mum! I understood my daughter's needs that were very intense. One time I succumbed to peer Mum pressure to put Amy in a creche while I went for a swim. It is my only regret thus far in parenthood that I did that because I knew, just knew it wasn't the place for Amy. I have known for a long time that she needs the one-on-one connection with an adult where-ever she is. As an under-two, it simply traumatised her to be left alone with a whole bunch of kids and babies and if you ask me, two very inexperienced first-time Mums who were running the creche. When they returned her to me in the changing rooms I could hear her screaming "Mummy!" long before they entered the rooms. Her trousers were off, her face was covered in her morning tea and she was hot, bothered and shaking. For six months prior we had been able to leave her quite happily with another family in town. However we couldn't leave her with anyone for a good four months after that incident. It look a while to rebuild the trust.
Another friend had her same-aged child in the creche too and her child was fine. She's the kind of child you can put in a room and she will entertain herself and graviate to others. No wonder Amy freaked. All the things that aggravate her autistic traits were in full swing in that creche - chaos, no one-on-one attention, and her needs clearly weren't met. Apparently she started crying long before they brought her to me and they only brought her out because she was disturbing the babies (of the two first-time Mums running the creche). Grrrr! It makes me very angry to recall all this from almost two years ago. A bad experience for myself and Amy but I learnt from that. I have always trusted my maternal instincts since then - no matter how contrary they are to common advice out there.
As a baby while breast-feeding Amy used to wrap her fingers around my then long-hair. This continued all the way through the breast-feeding days. She now still holds tightly on my hair when she is overwhelmed or is seeking extra-comfort. This is one of several cues I have that she either wants to get out of a situation or needs some quiet time with her Mum.
It was the Head Teacher at Playgroup who said she'd seen a lot of children in her time and that every now and then once stood out. Amy was one of those children. She agreed one hundred percent with me that I ought to get her "checked out." Even though my gut was telling me I was right, it was her support that gave me the courage to start the ball rolling.
I have worked with many special needs children over the years and have a BA (Psych) in Education and Psychology. I have always treated children as individuals first, disorders second. Although getting my own daughter diagnosed wasn't easy, it was a relief as it has given us something to work with. I have always accepted Amy for where she's been at. Yet a diagnosis has helped categorise a lot of her behaviours which means we have a team on board to help us.
For me I am so pleased that we have raised Amy as Amy this far - and not tried to force her to be something she isn't. Her needs have always been met; even if they have been quite intense for us as parents.
For many tiresome months I attempted putting her back in the cot after coaxing her to a settled state on the couch that was in her bedroom. But she would often wake just two hours later, seeking more comfort. I researched and got lots of advice around sleep issues then finally decided to give her what she was asking for - the warm of her Mum's body at night.
I have believed all the way through that Amy has needed me close to reassure her that all is okay. It is now, six months after Amy's diagnosis of ASD (autism spectrum disorder), that her strong needs for comfort and support from baby to preschooler make sense. Autistic children have trouble regulating their emotions and battle with high anxiety. I always thought as a baby Amy was struggling with some kind of anxiety and was afraid of being left alone. Crying it out to force her to come to grips with it all and face her fears felt so, so wrong, But I did try it only to have Amy get herself so worked up that it took hours to settle her down again. So I did the opposite of what is recommended by many, and allowed her to have as much support as she needed from me as her Mum - day and night. I'm glad as I did as now at almost four years of age she is sleeping through the night a few times a week. It hasn't been an easy road; but it has been the right one for Amy.
Amy was a baby who wouldn't go to just anyone. She clung to her Mum from a very early age. However as soon as she started walking (at the age of twelve months) it was clear she was quite the adventurer. Over time it was also apparent that she more interested in her surrounds than people. None of her toys have ever been a waste of money!
When our antenatal class met for coffee dates Amy The Toddler would be off exploring while the other children pottered around, not interacting, but looking at each other with interest. She was always on a quest and happy doing her own thing. When her peers were starting to stay "hi" and wave bye-bye, Amy seemed oblivious that both children and adults around her were attempting to make a connection with her.
Visiting the supermarket with Amy The Toddler often resulted in no response from her when the check-out lady asked her a question. As was typical of Amy at that age, she would look into the distance as if she hadn't heard anything. Often it was remarked that she was "shy." But I knew she wasn't. With the confidence she had exploring I knew that it was more disinterest than shyness. She just didn't seem to want to connect with those around her.
I started two regular playdates for Amy around the age of eighteen months. I thought perhaps the one-on-one playdates might encourage her to connect socially with some same-aged peers. I also thought we needed to build up some support systems around us should Amy need to be left with someone else. For quite some time I did child swaps with the other two Mums. I think it did Amy a world of good to get to know two other little people at quite a young age. She now at almost four years of age has two good friends as well as a handful of other same-aged peers she sees frequently.
Around six months of age Amy started going to Music classes and to Playgroup. As soon as she could crawl she was off exploring. Once again she was more interested in her surrounds than the other children. After months of chasing her back into the circle at Music group she started to grasp the concept and join in circle time. She came to love the songs, the dancing and the musical instruments. However half an hour was often a stretch for her and she made it clear when she'd had enough - it wasn't hard to read when she was overstimulated.
We enroled Amy at the local Kindy at two years of age, expecting her to get in at three. However there was quite a long waiting list at the time and she didn't get in til she was three and a half. It was obvious that she had out-grown Playgroup at three years and this was illustrated by her behaviour. It seemed whenever a child entered her space (which is an air-bubble of forever varying size!), she would push, hit or kick that child. Eventually this became a habit and whenever Amy saw a child, smaller than herself, she would automatically lash out. The only thing I could do to monitor her behaviour was to "shadow" her around Playgroup. We tried sticker charts to reinforce good behaviour ie: no pushing/hitting/kicking at the end of a session. Telling her not to push/hit/kick resulted in a blank look. We'd say "Be nice to people and animals" and she'd repeat the words yet didn't seem to understand that she was actually hurting other children. Explaining children felt sad when she hurt them didn't register for a while though thanks to a great book I found in the library When I Feel Sad, Amy does have some comprehension of why she and also others might feel sad.
Our attempts at controlling her behaviour at Playgroup didn't transfer to other environments so it seemed the message got lost. eg: she would still strike out at a random child in the playground and lashed out at one of her friends younger siblings for many, many months.
The family cat also went through his own share of torment. "Nice pats" and "gentle" seemed like wasted words for a very long time. Hurting others almost seemed to be something she found funny at times; it was sometimes more than a form of self-defense. She lashed out at us, her parents, as often she was angry and unable to express that. We've been encouraging her to "use her words" for a very long time, and now she is starting to say "I am cross" and express herself more. To deal with the hostile behaviour we tried time-outs which often resulted in Amy purposefully peeing herself in her time-out spot. If we put her in the hall she would scream until she got herself really worked up and at the same time wasn't able to comprehend why she'd gone out into the hall. Quiet time in her room was and still is the only form of discipline that seems to work - apart from distraction which I would say would be the parent of an autistic childs key weapon!
Since starting Kindy at the age of three and a half, Amy has made some huge improvements in her behaviour. A change was very good for her as were consistent rules and children older than herself that were able to role-model appropriate social behaviours. She stopped consistently teasing the cat, and laid off her friend's younger sibling and stopped targeting toddlers out there.
However six months down the track at Kindy, Amy's peers have changed so that she is now one of the eldest children in the afternoon sessions. She is clearly bored and a bit lost without the social guidance she needs from children a bit older than herself. She will be moving into morning Kindy in May which I think will be very good for her. At the moment she is acting out at Kindy because the three year olds there are just as socially inept as she is! There are not many children there who are able to initate play. This has brought out some of her extreme behaviour that we haven't seen for around six months. But luckily one of her old friends goes to Kindy and the girls tend to hang together a lot.
Right from the start I have followed Amy's lead. I knew she was perhaps wired differently to other kids. But I did what felt right for her/us - and didn't follow any traditional, Western parenting guidelines. A lot of it felt wrong with Amy and I didn't agree with it. I didn't enjoy the age comparisons that came with antenatal class catch-ups and eventually the group fizzled out anyway - though we still catch up every now and then. It seemed if your child didn't sleep through the night at six weeks, wasn't toilet-trained by two, or in a big bed, sleeping on her own as early as possible - things weren't faring too well. I never felt comfortable with the one-size fits all kind of parenting and Amy's needs certainly reinforced this for me.
I had worked as a nanny with a boy with Aspergers for two years in Canada many years ago. The older Amy got, the more I thought how alike this boy she was. At eighteen months her social disinterest was highly evident. Her regular playdates with the two girls changed this and eventually she became more interested in interacting with other children. But there were issues. Not just with the social stuff; it was also the way she was at home. She resisted toileting training for a long time. We often went two steps forward and one back. There was no picking the right time because she was "ready." There was a lot of coaxing and pursuading involved. Lollies didn't work nor did stickers. She just wasn't making the connection. Although we finally got her on the potty to do wees, it wasn't until we used a social story that she graduated to the toilet.
Amy was a late-talker. She moaned and groaned to us even as a toddler and often would drag us around by the hand if she wanted something. It seemed to frustrate both her and us that she wasn't able to verbalise her needs. This didn't help on the kicking/hitting and pushing front. One time when visiting some friends of ours who had three boys at the time (they now have four); the youngest came out of the room bawling with a very clear bite-mark on his arm. Amy was pre-verbal at the time, around two years of age and in tears herself. No adult was in the room with her yet it was obvious to us that one of the boys had tried to take her toy dog off her. She didn't know how to say no, felt overwhelmed and bit the boy. Not acceptable behaviour of course - but understandable.
Instructions had to and still have to be broken down to Amy's level. I cannot say when I thought there was something wrong. If anything it just became more and more evident that she was wired a particular way and I knew not many people understood that - and that I wasn't been a paranoid first-time Mum! I understood my daughter's needs that were very intense. One time I succumbed to peer Mum pressure to put Amy in a creche while I went for a swim. It is my only regret thus far in parenthood that I did that because I knew, just knew it wasn't the place for Amy. I have known for a long time that she needs the one-on-one connection with an adult where-ever she is. As an under-two, it simply traumatised her to be left alone with a whole bunch of kids and babies and if you ask me, two very inexperienced first-time Mums who were running the creche. When they returned her to me in the changing rooms I could hear her screaming "Mummy!" long before they entered the rooms. Her trousers were off, her face was covered in her morning tea and she was hot, bothered and shaking. For six months prior we had been able to leave her quite happily with another family in town. However we couldn't leave her with anyone for a good four months after that incident. It look a while to rebuild the trust.
Another friend had her same-aged child in the creche too and her child was fine. She's the kind of child you can put in a room and she will entertain herself and graviate to others. No wonder Amy freaked. All the things that aggravate her autistic traits were in full swing in that creche - chaos, no one-on-one attention, and her needs clearly weren't met. Apparently she started crying long before they brought her to me and they only brought her out because she was disturbing the babies (of the two first-time Mums running the creche). Grrrr! It makes me very angry to recall all this from almost two years ago. A bad experience for myself and Amy but I learnt from that. I have always trusted my maternal instincts since then - no matter how contrary they are to common advice out there.
As a baby while breast-feeding Amy used to wrap her fingers around my then long-hair. This continued all the way through the breast-feeding days. She now still holds tightly on my hair when she is overwhelmed or is seeking extra-comfort. This is one of several cues I have that she either wants to get out of a situation or needs some quiet time with her Mum.
It was the Head Teacher at Playgroup who said she'd seen a lot of children in her time and that every now and then once stood out. Amy was one of those children. She agreed one hundred percent with me that I ought to get her "checked out." Even though my gut was telling me I was right, it was her support that gave me the courage to start the ball rolling.
I have worked with many special needs children over the years and have a BA (Psych) in Education and Psychology. I have always treated children as individuals first, disorders second. Although getting my own daughter diagnosed wasn't easy, it was a relief as it has given us something to work with. I have always accepted Amy for where she's been at. Yet a diagnosis has helped categorise a lot of her behaviours which means we have a team on board to help us.
For me I am so pleased that we have raised Amy as Amy this far - and not tried to force her to be something she isn't. Her needs have always been met; even if they have been quite intense for us as parents.
Wednesday, February 4, 2009
Introductory post
I have decided to start a blog about life with our mildly autistic daughter for a number of reasons - mainly because I feel it would be useful for friends and family (and whoever else is interested) to gain an insight into Amy's* inner world (which is obviously reflected through her outward behavior).
We are lucky to be surrounded by supportive family and friends who sincerely want to understand her diagnosis of ASD (autism spectrum disorder). It takes people who are in contact with Amy a while to understand her behaviour because at first she seems "just like any other child." When I've often tried to explain her autistic characteristics on the phone to people who haven't seen so much of her; they cannot understand what I am talking about. "My child does that" they say when I describe her behaviour.
The thing is, an autistic child, especially one who is mildly autistic like Amy is like any other child in so many ways. She just needs more guidance, patience and understanding than some simply because to her some things socially don't make sense and therefore she may act inapproprately. I will elaborate in further posts about how she is wired.
I want this to be an interactive blog. I want friends and family (and anyone else who is interested) to email me questions and to post comments. I will happily answer anything you want to know about ASD.
Amy will be four next month and I do not want to discuss her autism in front of her any more. We have a family trip coming up in three months to Hamilton/Tauranga to catch up with friends and family. Amy will be in contact with lots of children and if I can describe some of her "ways" on this blog, before we actually see everyone, I think it'll give all those we will be catching up with an insight to ASD.
If you want to know more about autism have a look at The Autism New Zealand site - it's very informative. There is obviously a heap of other information available on the Net.
This blog will be written from a Mum's perspective only. It is certainly not a blog to be relied on for up-to-date information about autism. The blog name "Help Me Mummy!" is a call I often get from Amy said in desperation whenever something goes wrong. Yet she cries out to me in many other ways such as by pulling my hair or hitting me when something has overwhelmed her socially. I feel it is my job/our job as parents to help her fit into the world outside our home as naturally as possible. At the end of the day, all she wants is to feel included and part of her social world - just like the rest of us.
*Amy is not my daughter's real name but is the name I have given her for the purposes of this blog.
We are lucky to be surrounded by supportive family and friends who sincerely want to understand her diagnosis of ASD (autism spectrum disorder). It takes people who are in contact with Amy a while to understand her behaviour because at first she seems "just like any other child." When I've often tried to explain her autistic characteristics on the phone to people who haven't seen so much of her; they cannot understand what I am talking about. "My child does that" they say when I describe her behaviour.
The thing is, an autistic child, especially one who is mildly autistic like Amy is like any other child in so many ways. She just needs more guidance, patience and understanding than some simply because to her some things socially don't make sense and therefore she may act inapproprately. I will elaborate in further posts about how she is wired.
I want this to be an interactive blog. I want friends and family (and anyone else who is interested) to email me questions and to post comments. I will happily answer anything you want to know about ASD.
Amy will be four next month and I do not want to discuss her autism in front of her any more. We have a family trip coming up in three months to Hamilton/Tauranga to catch up with friends and family. Amy will be in contact with lots of children and if I can describe some of her "ways" on this blog, before we actually see everyone, I think it'll give all those we will be catching up with an insight to ASD.
If you want to know more about autism have a look at The Autism New Zealand site - it's very informative. There is obviously a heap of other information available on the Net.
This blog will be written from a Mum's perspective only. It is certainly not a blog to be relied on for up-to-date information about autism. The blog name "Help Me Mummy!" is a call I often get from Amy said in desperation whenever something goes wrong. Yet she cries out to me in many other ways such as by pulling my hair or hitting me when something has overwhelmed her socially. I feel it is my job/our job as parents to help her fit into the world outside our home as naturally as possible. At the end of the day, all she wants is to feel included and part of her social world - just like the rest of us.
*Amy is not my daughter's real name but is the name I have given her for the purposes of this blog.
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