Being a modern day Mum to any child right now is challenging. There are pressures all around you; pressure to appear as the perfect mother, pressures to return to work and contribute money to the household, pressure to stay at home and never miss a scrape or bump. The debate of stay at home vs. return to work will most likely never be settled but it's particularly important for parents of special needs children to acknowledge how much we already work. One thing that seems to be missing for a lot of mothers is respect. Respect for themselves and acknowledging how much we do work, and are not paid or recognised for it.
Take your average 40 hour a week job, I dare say that most mums who return to the workforce don't take on full time work, but let's just take this example for simplicity. Currently in my situation, my son attends an 18 hour Early Education Program Due to rising fuel prices and the stress of driving back and forth, it is easier for me to not come home during his school time. Now since teleports don't exist, I have to drive him there. Early morning traffic means it usually takes me about an hour from door to door and in the evenings, about 45 minutes as peak hour hasn't come into full swing yet. So for a three day a week program, we're already sitting at 23.5 hours. Alex has Occupational Therapy once a fortnight for an hour, so let's just simplify that to half an hour a week; 24 hours plus travel time equals 25 hours. We have recently started an ABA program. So far the sessions have been 1.5 hours in duration, and then we have our ABA homework. I've decided to aim for an hour a day, so over the course of a week, that adds up to 8.5 hours a week. So now we're at 34.5 hours a week including travel. Weekly speech therapy bumps the total up to 36.5 hours a week. I spend about half an hour a day doing Alex's readers which brings it up to 40 hours, and I haven't even touched the housework!!
Let's not forget that stay at home mum's don't get sick leave. If we're sick, we have to either suck it up and carry on or find someone else to take them to therapy. We get no long service leave, no pay and no recognition; and let's not forget the snide comments like "it must be so nice to stay at home and play all day".
Recently on our trip overseas I felt so embarrassed and degraded when filling out forms on the aeroplane, when I wrote in the occupation space 'mother'. Is that all I am? Someone's mother? Don't I deserve a little more credit than that? I know what they were really looking for; 'home duties' or the like, but I refuse to write that. I think from now on, I'm going to give myself a little more respect and write 'volunteer therapist'.
Monday, April 25, 2011
Sunday, April 10, 2011
Words....
Words have the power to both destroy and heal. When words are both true and kind, they can change our world. - Buddha
Two words, two terrifying words that change both everything and nothing at once. Intellectual Disability.
"Intellectual Disability" is the term used in Australia to describe individuals who have impaired cognitive functioning manifesting before 18 years of age . The same condition is described as "learning disability" in the United Kingdom and "mental retardation" in the United States.
Intellectual Disability can range from mild to profound in severity, and like Autism itself, there is no cure. In Australia, roughly 3% of the general population suffer from some form of Intellectual Disability. In the case of Autism (Kanner's or Classic) , approximately 70% of Autistic individuals have an Intellectual Disability. The remaining 30% usually have some form of Learning Disability. In Australia learning disability and Intellectual Disability are two unique terms and should not be confused. An Intellectual Disability is more severe than an learning disability and is much more difficult to overcome.
But can someone with an Intellectual Disability still learn? In most cases yes. More than half the people in Australia with an Intellectual Disability are classified as 'Mild', and even though learning may take longer, take more explanation and may need added props such as visuals, they can still learn.
Our experience with Alex is it can take a while for information to be learned, but once he has truly learnt it, he tends to retain it. For example it took us approximately 6 months to teach him to recognise the full alphabet, now he can point out and recognise any letter and is starting to have some word recognition. We have been working on numbers for nearly a year now and he can recognise more than 20 numbers and can count to 10 with a bit of help and encouragement. Alex has bigger trouble with more abstract concepts though, for example, he only learnt 3 months ago the correct response to "What's your name?" is "Name is Alex".
We have a lot of hope for Alex and Alex's future but for now we have our daily struggles of aiding him to get dressed and undressed, bathing him, brushing his teeth, changing his nappy and so much more. The daily grind for us as parents to try and not only teach him information children 1 or 2 years his junior know, but to teach him life skills and subtleties of social interaction does become quite a labor. But it's a labor of love for one very special little man, who I believe has all the potential in the world.
[There will be no blog post on Monday 18th April, due to the fact we're overseas. The next post will be Monday 25th April.]
Two words, two terrifying words that change both everything and nothing at once. Intellectual Disability.
"Intellectual Disability" is the term used in Australia to describe individuals who have impaired cognitive functioning manifesting before 18 years of age . The same condition is described as "learning disability" in the United Kingdom and "mental retardation" in the United States.
Intellectual Disability can range from mild to profound in severity, and like Autism itself, there is no cure. In Australia, roughly 3% of the general population suffer from some form of Intellectual Disability. In the case of Autism (Kanner's or Classic) , approximately 70% of Autistic individuals have an Intellectual Disability. The remaining 30% usually have some form of Learning Disability. In Australia learning disability and Intellectual Disability are two unique terms and should not be confused. An Intellectual Disability is more severe than an learning disability and is much more difficult to overcome.
But can someone with an Intellectual Disability still learn? In most cases yes. More than half the people in Australia with an Intellectual Disability are classified as 'Mild', and even though learning may take longer, take more explanation and may need added props such as visuals, they can still learn.
Our experience with Alex is it can take a while for information to be learned, but once he has truly learnt it, he tends to retain it. For example it took us approximately 6 months to teach him to recognise the full alphabet, now he can point out and recognise any letter and is starting to have some word recognition. We have been working on numbers for nearly a year now and he can recognise more than 20 numbers and can count to 10 with a bit of help and encouragement. Alex has bigger trouble with more abstract concepts though, for example, he only learnt 3 months ago the correct response to "What's your name?" is "Name is Alex".
We have a lot of hope for Alex and Alex's future but for now we have our daily struggles of aiding him to get dressed and undressed, bathing him, brushing his teeth, changing his nappy and so much more. The daily grind for us as parents to try and not only teach him information children 1 or 2 years his junior know, but to teach him life skills and subtleties of social interaction does become quite a labor. But it's a labor of love for one very special little man, who I believe has all the potential in the world.
[There will be no blog post on Monday 18th April, due to the fact we're overseas. The next post will be Monday 25th April.]
Friday, April 8, 2011
Welcome to Sensory Hell
My clothes annoy me
They've never done this before
I want to chew on everything
And it's not 'cause I'm bored
I wont eat my food
I just sit and stare
I can't sit still
I wriggle in my chair
If you take me to a noisy place
I'm bound to meltdown
If you try and cut my hair
I'll scream the house down
I really don't like it
When you wash my hair
Please don't take me swimming
I can't stand it there
I prefer heavy blankets
They help me sleep at night
When you go near an escalator
You'll need to hug me tight
Big firm cuddles
Really calm me down
I like to play with cars
And spin the wheels round and round
I get frightened when you vacuum
And I have to run away
I really can't help it
I was born this way
Monday, April 4, 2011
So, what IS Autism? (Part 2)
As previously mentioned, it's a neurological disorder. A problem with the brain's 'wiring' so messages can be slow and/or jumbled in getting through to the brain. Autism affects many different areas; Social, Behavioural, Communication and often the Senses. Autism is part of the Autism Spectrum Disorders including Aspergers, PDD-NOS, Rhett's, Fragile X and of course Autism (classical). It is referred to as a spectrum to attempt to illustrate how widely varying the disorder can be. An Autistic person can be profoundly both mentally and physically disabled, or in the case of Aspergers, be 'a little odd' but otherwise indeterminable from any other person in the 'normal' population. There is constant debate in the medical world over diagnostic symptoms and labels. There is fierce debate over whether the Aspergers label will stand alone in the new Diagnostic and Statistical Manual (DSM) or be absorbed into the Autism label, and whether 'high functioning' Autism really exists, and if and how it differs from Aspergers.
Common Social markers for Autism may include limited eye contact or avoidance, limited or absent social intuition, not being able to read social situations, cues and body language, may not point at objects or use hand gestures, can not read or understand emotions. In play they do not tend to seek out other children, often lack imaginative play and often play with toys in an odd manner. For example, one of Alex's favourite things to do is find every matchbox car he owns and line them all up perfectly in a row, all facing the same direction. When he has run out of cars to line up, he will often start a new line. If you try and disrupt the line, or try and make the cars drive normally, he will get very distressed. Rather than play with a truck or wagon 'normally', he likes to turn the wagon upside down and spin the wheels. He can do this for an hour or more.
A common Communication problem Autistic children have is delayed/limited speech. They may grow to have a more varied vocabulary, but still not construct full sentences, or give instructions. ‘Echolalia’ is very common in Autistic children. This means they can repeat language, but not necessarily understand the language, or use that word in their every day vocabulary. We can say to Alex "would you like a drink" and his response can be "drink" rather than "Yes". A lot of Autistic children have difficulty understanding and following instructions. "Give me the block and sit on the chair" may be too much for them to comprehend at once. They often find it easier if you keep it to short concise instructions. Autistic children may display repetitive language, repeating the same word or words over and over. Alex has a lot of difficulty with pronouns in his speech. If you say "where's your ...." or "would you like......" he often won't understand, where as if you say "where's Alex's ......" or "would Alex like......." he'll understand perfectly. He'll often even get that jumbled as well and when looking for his shoes he'll say "where's your shoes?" not "where's my shoes".
The most common Behavioural symptom in Autism is repetitiveness. Autistic children are typically incredibly routine focused. Sheldon makes a shining example of this on The Big Bang Theory in that he can't possibly have Chinese on a Friday night because Friday night is pizza night or something to that effect. Routines must be carried out just so, in the correct order or the child may become upset or confused. Children may focus on one very small part of a toy with great intensity, either just spinning the wheel of a car, or getting down on the same level as the car and moving the car back and forth in front of their eyes, watching the wheels. Self stimulatory behaviours such as hand flapping, rocking back and forth and toe walking are also quite common.
Not all Autistic children have sensory issues, but most often they will. Some can't stand the touch or feel of certain fabrics on their skin, while with others, certain fabrics can send them in to a 'trance'. I've heard of more than one Autistic child who was entranced by corduroy fabric. He'd sit there, for hours on end just feeling the ridges. Some Autistic children are very sensitive to noises; loud busy places like shopping centres overload them, they run and hide if you turn on the vacuum cleaner and they're terrified by hand driers. Some Autistic children suffer from visual sensitivities; they can't stand fluorescent lights, and if a room is too busy with colours and pictures they can't focus. Smell can be another issue; some can't stand to be within 20 metres of the fish shop whilst others will insist on following you into The Body Shop and need to smell everything intently. Even taste/texture can be an issue with Autistic children. Some prefer very plain tasting things and will prefer to eat plain bread and chicken, others can't stand crunchy things like stir fried broccoli.
As you can see, Autism is no one particular behaviour or symptom. It's a varying degree of many issues, some of which I have not even mentioned. The most important thing is that we love and support these children and give them the understanding that they need.
Common Social markers for Autism may include limited eye contact or avoidance, limited or absent social intuition, not being able to read social situations, cues and body language, may not point at objects or use hand gestures, can not read or understand emotions. In play they do not tend to seek out other children, often lack imaginative play and often play with toys in an odd manner. For example, one of Alex's favourite things to do is find every matchbox car he owns and line them all up perfectly in a row, all facing the same direction. When he has run out of cars to line up, he will often start a new line. If you try and disrupt the line, or try and make the cars drive normally, he will get very distressed. Rather than play with a truck or wagon 'normally', he likes to turn the wagon upside down and spin the wheels. He can do this for an hour or more.
A common Communication problem Autistic children have is delayed/limited speech. They may grow to have a more varied vocabulary, but still not construct full sentences, or give instructions. ‘Echolalia’ is very common in Autistic children. This means they can repeat language, but not necessarily understand the language, or use that word in their every day vocabulary. We can say to Alex "would you like a drink" and his response can be "drink" rather than "Yes". A lot of Autistic children have difficulty understanding and following instructions. "Give me the block and sit on the chair" may be too much for them to comprehend at once. They often find it easier if you keep it to short concise instructions. Autistic children may display repetitive language, repeating the same word or words over and over. Alex has a lot of difficulty with pronouns in his speech. If you say "where's your ...." or "would you like......" he often won't understand, where as if you say "where's Alex's ......" or "would Alex like......." he'll understand perfectly. He'll often even get that jumbled as well and when looking for his shoes he'll say "where's your shoes?" not "where's my shoes".
The most common Behavioural symptom in Autism is repetitiveness. Autistic children are typically incredibly routine focused. Sheldon makes a shining example of this on The Big Bang Theory in that he can't possibly have Chinese on a Friday night because Friday night is pizza night or something to that effect. Routines must be carried out just so, in the correct order or the child may become upset or confused. Children may focus on one very small part of a toy with great intensity, either just spinning the wheel of a car, or getting down on the same level as the car and moving the car back and forth in front of their eyes, watching the wheels. Self stimulatory behaviours such as hand flapping, rocking back and forth and toe walking are also quite common.
Not all Autistic children have sensory issues, but most often they will. Some can't stand the touch or feel of certain fabrics on their skin, while with others, certain fabrics can send them in to a 'trance'. I've heard of more than one Autistic child who was entranced by corduroy fabric. He'd sit there, for hours on end just feeling the ridges. Some Autistic children are very sensitive to noises; loud busy places like shopping centres overload them, they run and hide if you turn on the vacuum cleaner and they're terrified by hand driers. Some Autistic children suffer from visual sensitivities; they can't stand fluorescent lights, and if a room is too busy with colours and pictures they can't focus. Smell can be another issue; some can't stand to be within 20 metres of the fish shop whilst others will insist on following you into The Body Shop and need to smell everything intently. Even taste/texture can be an issue with Autistic children. Some prefer very plain tasting things and will prefer to eat plain bread and chicken, others can't stand crunchy things like stir fried broccoli.
As you can see, Autism is no one particular behaviour or symptom. It's a varying degree of many issues, some of which I have not even mentioned. The most important thing is that we love and support these children and give them the understanding that they need.
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