I have recently stumbled upon this amazing piece of insight into the perspective of a person with autism. Jim Sinclair, the man who wrote this essay, is an adult with autism and did not speak until he was 12 years of age. In this essay, he speaks against the sadness and grief parents experience when their child is diagnosed with autism. He re-defines that grief experience as a mourning for loss of expectations of an imagined relationship - which he says has nothing to do with autism or with the child. He says "It isn't about autism, it's about shattered expectations".
The thoughts expressed in this essay have caused me to try to focus on Ethan's strengths more than I do, and accept him for the wonderful, delightful boy he is, instead of seeing him through my sometimes negatively-tinted autism lens. This has also challenged me to re-frame my concept of autism in terms of the positive aspects it brings to my child - autism is not necessarily negative.
Another key passage in this essay that resonated with me:
"You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."
I have gained such insight and a different perspective on autism through pondering what Jim says in this essay; hopefully others do too.
Don't Mourn For Us
Thursday, November 11, 2010
Sunday, October 17, 2010
You got a tag?
"You got a tag?" is a question we are bombarded with many, many times a day. Ethan's newest obsession is name tags - it emerged about two weeks ago. He is absolutely mesmerised with them and tags seem to dominate his thoughts for most of every day. As a "neurotypical" being, I find it hard to imagine how he could think about name tags all day - it really doesn't seem that fascinating to me!
Tonight we were sitting around the table eating dinner and out of the blue Ethan comments to Nathan "your tag is a rectangle". He was obviously thinking back to earlier in the day when Nathan was leading our church service. Nathan was standing up the front at the pulpit and I came in the back door with the boys. From the back of the church (15 - 20 metres away) Ethan immediately spotted that Nathan was wearing a name tag, commenting in a loud voice "daddy's got a tag!!". The tag was a rectangle shape, with "Nathan" printed on it. After Sunday School, Ethan could barely wait to race up to Nathan and scrutinise his name tag from close range. After he had a good perusal, he did his excited autism dance around daddy. Ethan then must have been thinking about daddy's tag for the rest of the day.
I have made Ethan his very own laminated name tag, with his photo and name on it. He wears it attached to a lanyard around his neck and is very hesitant to take it off around the house. He loves to wear it out and about too. I won't allow him to take it to kindergarten because I think he would be too distracted and over-focused on it all day.
Ethan insisted on wearing his tag to the supermarket the other day, and his main aim during the entire shopping trip was to ask every person we passed "you got a tag?". He then proceeded to check their person for a name tag- if they didn't have a tag he would say "oh, you don't got a tag." But if they were wearing a tag (ie. all the Woolworths staff!) he would try to read the name then very excitedly say "You got a tag!!!!" and dance around with excitement.
Maybe life would be more fun for us all if we got excited about everyday objects like name tags.
So if you see us and Ethan interrogates you about whether "you got a tag?", you'll understand why!!
Tonight we were sitting around the table eating dinner and out of the blue Ethan comments to Nathan "your tag is a rectangle". He was obviously thinking back to earlier in the day when Nathan was leading our church service. Nathan was standing up the front at the pulpit and I came in the back door with the boys. From the back of the church (15 - 20 metres away) Ethan immediately spotted that Nathan was wearing a name tag, commenting in a loud voice "daddy's got a tag!!". The tag was a rectangle shape, with "Nathan" printed on it. After Sunday School, Ethan could barely wait to race up to Nathan and scrutinise his name tag from close range. After he had a good perusal, he did his excited autism dance around daddy. Ethan then must have been thinking about daddy's tag for the rest of the day.
I have made Ethan his very own laminated name tag, with his photo and name on it. He wears it attached to a lanyard around his neck and is very hesitant to take it off around the house. He loves to wear it out and about too. I won't allow him to take it to kindergarten because I think he would be too distracted and over-focused on it all day.
Ethan insisted on wearing his tag to the supermarket the other day, and his main aim during the entire shopping trip was to ask every person we passed "you got a tag?". He then proceeded to check their person for a name tag- if they didn't have a tag he would say "oh, you don't got a tag." But if they were wearing a tag (ie. all the Woolworths staff!) he would try to read the name then very excitedly say "You got a tag!!!!" and dance around with excitement.
Maybe life would be more fun for us all if we got excited about everyday objects like name tags.
So if you see us and Ethan interrogates you about whether "you got a tag?", you'll understand why!!
Friday, July 9, 2010
Social Skill Milestones
After about 3 years of practice, practice, practice Ethan can now fairly reliably say "My name is Ethan" when he is asked "what is your name?". We have spent endless hours practicing in ABA drills and in the community. But the other day Ethan surprised me by adding extra detail to his usually limited social banter.
We were waiting at our local medical centre to see the GP regarding Ethan's cough and cold. A little 3 year old boy came into the children's play area where we were waiting. Ethan said "little boy, you sit on this chair" - which he did. The boy's father said "hello, this is Dane and my name is Mike. What is your name?" Ethan looked at the man and said "My name is Ethan", then Ethan looked at me, gestured toward me with a wave of his hand and said "And this is my mummy!". I was speechless. I have never heard him introduce me to anyone before - we have never even practiced that- and he said it so clearly, combined with lovely gestures! My eyes welled with tears of joy and pride in how my beautiful little boy is learning and developing!
We were waiting at our local medical centre to see the GP regarding Ethan's cough and cold. A little 3 year old boy came into the children's play area where we were waiting. Ethan said "little boy, you sit on this chair" - which he did. The boy's father said "hello, this is Dane and my name is Mike. What is your name?" Ethan looked at the man and said "My name is Ethan", then Ethan looked at me, gestured toward me with a wave of his hand and said "And this is my mummy!". I was speechless. I have never heard him introduce me to anyone before - we have never even practiced that- and he said it so clearly, combined with lovely gestures! My eyes welled with tears of joy and pride in how my beautiful little boy is learning and developing!
Sunday, June 27, 2010
Some progress!
We are amazed with the rate of Ethan’s speech development this year so far. Something seems to be “clicking” in his brain in regard to speech and language. And since he had grommets inserted in his ears in October last year, being able to hear properly obviously helps too!
Due to Ethan’s problems with coordinating his mouth/ lips/ tongue, his articulation continues to be difficult, for example substituting “f” sound with “g” or “k” (says “gish” instead of “fish”) and “l” with “w” (says “wuv” instead of “love”), difficulty approximating “s” or “sh” and the more complex consonant blends “tr”, “st”, “bl”, “br”, “dr”, “pl” etc! This makes his speech difficult for others to understand and he still needs me to interpret his speech at times, but not nearly as often as before.
His sentences are becoming longer/ more complex spontaneously and everyday I am astounded by something he says. We have worked so hard at getting him to elaborate on his nouns by adding an adjective. Now he rarely just says “a ball”, instead saying “that’s a big red ball” without prompting!
I think being at Kindergarten and around other kids for two full days a week has helped spur on this burst of speech and language progress. It delights me when I drive him home on Wednesdays I can ask him to tell me about the book he chose from the library, and he can answer eg. “library book about a lion (“wion”)”. I can ask him what he did at school that day and he can list a couple of things eg “I played with teddies with Sharon” or “I build blocks with Samuel”.
Ethan is still far from “age appropriate” with speech/ language development but we are excited with his progress. Alongside his improved speech is much improved interest in others and a strong desire to share his thoughts and interests and social games, particularly with Nathan, Eli and I. It is good to celebrate and reflect on the gains he is making!
Due to Ethan’s problems with coordinating his mouth/ lips/ tongue, his articulation continues to be difficult, for example substituting “f” sound with “g” or “k” (says “gish” instead of “fish”) and “l” with “w” (says “wuv” instead of “love”), difficulty approximating “s” or “sh” and the more complex consonant blends “tr”, “st”, “bl”, “br”, “dr”, “pl” etc! This makes his speech difficult for others to understand and he still needs me to interpret his speech at times, but not nearly as often as before.
His sentences are becoming longer/ more complex spontaneously and everyday I am astounded by something he says. We have worked so hard at getting him to elaborate on his nouns by adding an adjective. Now he rarely just says “a ball”, instead saying “that’s a big red ball” without prompting!
I think being at Kindergarten and around other kids for two full days a week has helped spur on this burst of speech and language progress. It delights me when I drive him home on Wednesdays I can ask him to tell me about the book he chose from the library, and he can answer eg. “library book about a lion (“wion”)”. I can ask him what he did at school that day and he can list a couple of things eg “I played with teddies with Sharon” or “I build blocks with Samuel”.
Ethan is still far from “age appropriate” with speech/ language development but we are excited with his progress. Alongside his improved speech is much improved interest in others and a strong desire to share his thoughts and interests and social games, particularly with Nathan, Eli and I. It is good to celebrate and reflect on the gains he is making!
Saturday, February 20, 2010
Simple Pleasures: chocolate chip cookies
Today I baked what I rank as one of the most delicious batches of chocolate chip cookies that have ever emerged from my oven. They were superbly crunchy on the edges, then moist and creamy inside. Eaten still warmed from the oven, they tasted heavenly. The boys seemed to think so too.
Perhaps the perfection was due to Eli’s assistance in mixing and rolling lopsided drops of cookie dough in his chubby little fingers.
Once baked, Ethan helped himself to cookie after cookie, until I placed them high out of his reach. I managed to exert some degree of self-control and limited myself to two cookies.
Here’s my recipe:
150 g butter
1 cup brown sugar
1 egg
1 teaspoon vanilla
1 ½ cups self raising flour
1 cup chocolate chips
Sometimes I add ½ cup crumbed walnuts but I omitted them today because this batch needed to be nut-free so Ethan can have some in his school lunch box.
Cream butter and sugar until pale; beat in egg gradually, then add in vanilla. Mix in flour, choc chips and nuts with a wooden spoon. Roll out teaspoonfuls onto a greased baking tray and place in 180°C pre-heated oven, for 12- 15 minutes. Once cooled, they can be placed in zip lock bags and frozen.
I find baking to be quite therapeutic - I enjoy creating something delicious with my hands. Baking generates feelings of contentment and happiness, as I am busy in my own kitchen; delicious aromas wafting through the entire house; relishing the enjoyment the boys show in participating with the baking process and then tasting little treats they have helped to create, with a freshly brewed cup of tea. These are simple pleasures, but something as basic as baking seems to right things in my world, even if only briefly.
Thursday, February 11, 2010
The Inevitable Perils of Comparisons
It seems every time we go out and spend time with other “neurotypical” (to use a buzzword) children, I come home with sadness and disquiet in my soul. As much as I try not to, I inevitably compare Ethan to the other kids. Everyone says you shouldn’t compare, but I find it impossible not to! My hope is that as I grow more accustomed to Ethan’s diagnosis and more accepting of his disability I won’t compare as much.
The sadness is not so much for my loss of the same depth of relationship that other parents have with their 4 year old children (although that is part of it). I feel sadness for what Ethan seems to be missing out on, and what I fear will lead to him being rejected by his peers. The other day as Ethan played on the prep playground after school, I watched as an older boy tried to strike up a conversation with Ethan. It went like this:
Older child: “Hi are you in kinder?”
Ethan: no eye contact, after a 5 second delay “yets” (“yes” – his standard echolalic response)
Older child: “I’m in prep. Do you know where that is?”
Ethan: no eye contact, no response
Older child, pointing: “Prep is in that building over there, see?”
Ethan: no response, no eye contact, climbs past the boy
My heart ached, I felt sad for the other boy who had put so much effort into that interaction and received so little in return; and sad for Ethan who doesn’t understand or respond. We have spent hours coaching and drilling him in “parallel talk” in therapy, but his ability to generalise social responses is so inconsistent.
His poor physical skills also concern me – he stumbles along, running too fast in his loose gait, trying to keep up, falling over constantly, tripping, falling off playground equipment, getting distracted, with perpetual bruising. Other people must see me as a “helicopter mother”, always hovering around him, but they don’t realise how uncoordinated and accident-prone Ethan is. And his inattention, poor visual scanning and limited awareness of safety mean that he needs constant supervision.
I want to just stop worrying about his differences and delays, which seem to be ever-increasing as his peers’ development speeds up. Lately I find myself often thinking about his longer term future as the extent of his disability becomes more evident. It is sobering and anxiety wells up – even though I am so grateful to God for who Ethan is and what a precious, sweet son he is.
The sadness is not so much for my loss of the same depth of relationship that other parents have with their 4 year old children (although that is part of it). I feel sadness for what Ethan seems to be missing out on, and what I fear will lead to him being rejected by his peers. The other day as Ethan played on the prep playground after school, I watched as an older boy tried to strike up a conversation with Ethan. It went like this:
Older child: “Hi are you in kinder?”
Ethan: no eye contact, after a 5 second delay “yets” (“yes” – his standard echolalic response)
Older child: “I’m in prep. Do you know where that is?”
Ethan: no eye contact, no response
Older child, pointing: “Prep is in that building over there, see?”
Ethan: no response, no eye contact, climbs past the boy
My heart ached, I felt sad for the other boy who had put so much effort into that interaction and received so little in return; and sad for Ethan who doesn’t understand or respond. We have spent hours coaching and drilling him in “parallel talk” in therapy, but his ability to generalise social responses is so inconsistent.
His poor physical skills also concern me – he stumbles along, running too fast in his loose gait, trying to keep up, falling over constantly, tripping, falling off playground equipment, getting distracted, with perpetual bruising. Other people must see me as a “helicopter mother”, always hovering around him, but they don’t realise how uncoordinated and accident-prone Ethan is. And his inattention, poor visual scanning and limited awareness of safety mean that he needs constant supervision.
I want to just stop worrying about his differences and delays, which seem to be ever-increasing as his peers’ development speeds up. Lately I find myself often thinking about his longer term future as the extent of his disability becomes more evident. It is sobering and anxiety wells up – even though I am so grateful to God for who Ethan is and what a precious, sweet son he is.
Sunday, January 31, 2010
Starting School
There are many emotions and thoughts spinning around in my head as the first day of school for my firstborn nears! It seems such a momentous step for Ethan, he is certainly growing up. I am not sure that he is ready, in many ways he is not. He is still not toilet trained despite my best efforts over the past few months. Eli picked up the skill in about a week, but for Ethan it is very difficult. I am a paediatric O.T., if anyone has skills to toilet train a child with autism it should be me.
His speech is somewhat unclear and difficult to understand for those unfamiliar with him and his oral idiosyncracies. Ethan has made remarkable gains in speech since he had grommets inserted in October 2009, but he is still so very far behind his peers. I fear the other children will not be able to understand him and that he will be too unresponsive, and that they will give up on trying to communicate with him.
He has motor delays and a lot of kinder skills are a great challenge for him.
BUT he is interested in other children, he is readily attempting to communicate verbally and nonverbally, and his attention is much more sustained thanks largely to Applied Behavioural Analysis (ABA) therapy he has had over the past 6 months. He enjoys structure and routine and I think he likes a challenge, and enjoys learning. He loves to sing and listen to stories in a group format. He might be ok!
I think he is ready for the structure and increased demand of a school environment. My hope is that increased exposure to his peers and their language and social skills will assist his development in these core areas. If he continues to have fine and gross motor difficulties life will be harder for him, but if he can develop good social skills and communication, his future will be so much brighter!
I have written a social story entitled "Ethan is going to big school" which he loves. He seems to be anticipating starting school - most mornings he has a tantrum when he asks "I go big school today?" and I say "no big school today". He is looking forward to it, whatever his concept of school is. We are as prepared as I know how, at least in terms of what I can control. Uniform, backpack, cushion for rest time, lunch box, drink bottle, social story... I guess in another week and a half we will see how prepared Ethan really is!
His speech is somewhat unclear and difficult to understand for those unfamiliar with him and his oral idiosyncracies. Ethan has made remarkable gains in speech since he had grommets inserted in October 2009, but he is still so very far behind his peers. I fear the other children will not be able to understand him and that he will be too unresponsive, and that they will give up on trying to communicate with him.
He has motor delays and a lot of kinder skills are a great challenge for him.
BUT he is interested in other children, he is readily attempting to communicate verbally and nonverbally, and his attention is much more sustained thanks largely to Applied Behavioural Analysis (ABA) therapy he has had over the past 6 months. He enjoys structure and routine and I think he likes a challenge, and enjoys learning. He loves to sing and listen to stories in a group format. He might be ok!
I think he is ready for the structure and increased demand of a school environment. My hope is that increased exposure to his peers and their language and social skills will assist his development in these core areas. If he continues to have fine and gross motor difficulties life will be harder for him, but if he can develop good social skills and communication, his future will be so much brighter!
I have written a social story entitled "Ethan is going to big school" which he loves. He seems to be anticipating starting school - most mornings he has a tantrum when he asks "I go big school today?" and I say "no big school today". He is looking forward to it, whatever his concept of school is. We are as prepared as I know how, at least in terms of what I can control. Uniform, backpack, cushion for rest time, lunch box, drink bottle, social story... I guess in another week and a half we will see how prepared Ethan really is!
Friday, January 29, 2010
Thursday, January 28, 2010
Inagural Post
I've decided to join the blogger fad. In part it will be a welcome creative outlet - prior to having children 5 years ago, journal writing was a solace for me. It seems to have slipped, along with other creative pursuits I would follow - surfing, painting, playing my harp...
The more important impetus to blog is about working through my feelings and experiences in having Ethan, who was diagnosed with Autism Spectrum Disorder about 2 years ago.
My blog is titled "An Insider's Perspective" because it harks back to my honours thesis, similarly titled, that I completed in 2000. My research was an exploration of attitudes surrounding disability - and my findings were basically that a person's position with regard to disability seemed to strongly determine their attitudes about disability. It probably sounds an obvious conclusion, but it was still interesting: that people who have a personal experience with disability or have a family member with a disability, have a more positive attitude about disability and people with disabilities.
Little did I know that 8 years later I would find myself with an insider's perspective on autism. I studied Occupational Therapy and have spent majority of my career since graduating in 2000 working in the area of paediatrics. My last position before I went on maternity leave to give birth to Ethan, was in a team providing diagnostic and intervention services for children with Autism Spectrum Disorders. At the time one of my deepest fears was having a child with Autism. It seemed to me to be the worst thing that could happen - to lose your child to a disorder that impacted so heavily on your relationship with your child.
Well, my insider's perspective of having Ethan has changed my attitude about Autism. I have realised that Autism is not limiting - the diagnosis helps me and others to understand Ethan and to know the best ways to assist him to learn and communicate, but it does not define him. He has such happiness, affection, joy and ability to communicate. Our pre-conceived idea of Autism is so very narrow, that we tend to overlook the many positives our children have.
The more important impetus to blog is about working through my feelings and experiences in having Ethan, who was diagnosed with Autism Spectrum Disorder about 2 years ago.
My blog is titled "An Insider's Perspective" because it harks back to my honours thesis, similarly titled, that I completed in 2000. My research was an exploration of attitudes surrounding disability - and my findings were basically that a person's position with regard to disability seemed to strongly determine their attitudes about disability. It probably sounds an obvious conclusion, but it was still interesting: that people who have a personal experience with disability or have a family member with a disability, have a more positive attitude about disability and people with disabilities.
Little did I know that 8 years later I would find myself with an insider's perspective on autism. I studied Occupational Therapy and have spent majority of my career since graduating in 2000 working in the area of paediatrics. My last position before I went on maternity leave to give birth to Ethan, was in a team providing diagnostic and intervention services for children with Autism Spectrum Disorders. At the time one of my deepest fears was having a child with Autism. It seemed to me to be the worst thing that could happen - to lose your child to a disorder that impacted so heavily on your relationship with your child.
Well, my insider's perspective of having Ethan has changed my attitude about Autism. I have realised that Autism is not limiting - the diagnosis helps me and others to understand Ethan and to know the best ways to assist him to learn and communicate, but it does not define him. He has such happiness, affection, joy and ability to communicate. Our pre-conceived idea of Autism is so very narrow, that we tend to overlook the many positives our children have.
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