Good God it's a minefield out there. I have just contacted two ABA service providers, one isn't taking an more children and the other has us on a waiting list. And the cost! My goodness, these people are just taking advantage.
If we go down the ABA path, we need to provide and pay for the therapists who charge around $25 per hour. We need a minimum of 20 hours per week so yeah, we need to make $500pw magically appear. And that's not including the cost of speech therapists, psychologists, occupational therapy, paediatricians yadda yadda yadda.
My head is spinning. This is so hard to navigate.
Sunday, February 14, 2010
Friday, February 12, 2010
What We Know
So far what we know is that Jonah is regressing. He has many traits om the autism spectrum and he has been given a preliminary diagnosis of autism.
Here's the kicker, I'm an ex ABA (Applied Behavioral Analysis) therapist, I used to work with children who have autism. I used to do this for a living. I used to be the one who helped them! Somehow my brain had decided that this very fact meant that my children were immunised from autism.
It seems I was wrong.
When Jonah was 14 months old he could point to his eyes, nose and head on request. He was pointing, waving and calling us Mum and Dad, he was interested in people and would follow Seb all over the house when she got home from work.
Now, he does none of those things. He's lost them all. Not only that, he seems to have just lost interest in people. We have two gorgeous friends whom he'd flirt with unashamedly, now he doesn't even look at them. Needless to say, they're both devastated.
He's never bought me a toy to play with, he's never hurled a book at me, insisting I read it to him. And you know how, when you sleep with your baby you wake in the morning with their finger jammed up your nose, their hand in your mouth, ripping at your bottom lip and another finger jammed in your eyeball? He's never done that either.
One of the saddest things I've noticed is, Jonah has never danced. All of my babies have started that uncontrolable baby bopping from the time they were around 10 months old. Music would play and they would be possesssed by the beat, unable to resist the head banging and hip wiggling urge that overcame them and they'd dance like their life depended on it. Not with Jonah. He's never danced.
He used to point at things that interested him but I can't remember the last time he did that. He's slowly dissapearing from us and as each part of him is lost, so is a piece of my soul.
A month or so ago he started shaking his head rapidly from side to side and flicking his eyes at the same time. He's developed a keen interest in lights, anything that flashes or glowes and light switches are no longer safe. If I let him he'd click them on and off all day. As my bestie said, "Light switches are their God!"
If Jonah hurts himself, and he does often because he is a climber, he never comes to us to seek comfort. He will just sit and cry wherever he has landed and I only know he has hurt himself because I hear the thud and then the cry. I can't wear my headphones any more with my iPod on. I can't trust that he won't hurt himself badly and I would know.
But he is very compliant. If he's going to touch something or about to walk away from us, all I have to do is say his name and a request to 'come here', or 'hands down', and he will do as I ask, rarely ever getting upset. Apart from getting into the Tupperware and DVD cupboard every day, he's really an absolute joy to look after.
He's not much into routines (Hey, I have five kids, routine was a swear word in this house!) but if we say we are going in the car or it's time for a bath, you'd better high tail it straight there or there will be much snarling and gnashing of teeth!
This is all I can remember for now but I can guarantee you this post will be updated numerous times before my memory recall is done. Strangely, I'm getting a lot of comfort from other parents of ASD children who tell me, "Oh, yes! My child did that too!" Hearing this from parents of neurotypical children doesn't thrill me as much, it's just false hope and I have to let go of that.
If you have a child on the Autism spectrum, or you know someone who does, please share your story. What did your child do? What was he/she like? When did you 'know' there was something wrong and when was your child diagnosed? It might seem crazy but I need to know. I need to know I'm not alone out there.
Here's the kicker, I'm an ex ABA (Applied Behavioral Analysis) therapist, I used to work with children who have autism. I used to do this for a living. I used to be the one who helped them! Somehow my brain had decided that this very fact meant that my children were immunised from autism.
It seems I was wrong.
When Jonah was 14 months old he could point to his eyes, nose and head on request. He was pointing, waving and calling us Mum and Dad, he was interested in people and would follow Seb all over the house when she got home from work.
Now, he does none of those things. He's lost them all. Not only that, he seems to have just lost interest in people. We have two gorgeous friends whom he'd flirt with unashamedly, now he doesn't even look at them. Needless to say, they're both devastated.
He's never bought me a toy to play with, he's never hurled a book at me, insisting I read it to him. And you know how, when you sleep with your baby you wake in the morning with their finger jammed up your nose, their hand in your mouth, ripping at your bottom lip and another finger jammed in your eyeball? He's never done that either.
One of the saddest things I've noticed is, Jonah has never danced. All of my babies have started that uncontrolable baby bopping from the time they were around 10 months old. Music would play and they would be possesssed by the beat, unable to resist the head banging and hip wiggling urge that overcame them and they'd dance like their life depended on it. Not with Jonah. He's never danced.
He used to point at things that interested him but I can't remember the last time he did that. He's slowly dissapearing from us and as each part of him is lost, so is a piece of my soul.
A month or so ago he started shaking his head rapidly from side to side and flicking his eyes at the same time. He's developed a keen interest in lights, anything that flashes or glowes and light switches are no longer safe. If I let him he'd click them on and off all day. As my bestie said, "Light switches are their God!"
If Jonah hurts himself, and he does often because he is a climber, he never comes to us to seek comfort. He will just sit and cry wherever he has landed and I only know he has hurt himself because I hear the thud and then the cry. I can't wear my headphones any more with my iPod on. I can't trust that he won't hurt himself badly and I would know.
But he is very compliant. If he's going to touch something or about to walk away from us, all I have to do is say his name and a request to 'come here', or 'hands down', and he will do as I ask, rarely ever getting upset. Apart from getting into the Tupperware and DVD cupboard every day, he's really an absolute joy to look after.
He's not much into routines (Hey, I have five kids, routine was a swear word in this house!) but if we say we are going in the car or it's time for a bath, you'd better high tail it straight there or there will be much snarling and gnashing of teeth!
This is all I can remember for now but I can guarantee you this post will be updated numerous times before my memory recall is done. Strangely, I'm getting a lot of comfort from other parents of ASD children who tell me, "Oh, yes! My child did that too!" Hearing this from parents of neurotypical children doesn't thrill me as much, it's just false hope and I have to let go of that.
If you have a child on the Autism spectrum, or you know someone who does, please share your story. What did your child do? What was he/she like? When did you 'know' there was something wrong and when was your child diagnosed? It might seem crazy but I need to know. I need to know I'm not alone out there.
Why the Wolf.
I opened the door, the wolf was there. Snarling, biting and salivating, nipping at the heels of my baby as I tried to hold him high to safety.
The wolf was there. Unphased by me as I kicked and kicked it. Crying and screaming, I tried, so very hard to kick it back out that bloody door but it would not go.
The wolf was there. It had been seeking him, stalking and lurking outside knowing full well where its prey was and knowing it was stronger than me.
I'd seen the wolf, I'd seen it lurking there and I ignored it, never thinking it would get in, never thinking it would take my precious son, my sweet darling baby.
But the wolf grew, fed by an unknown force until it was so strong I could ignore it no more. I kicked, I kicked it hard. I told the others and they could also see it but they could not help me, they could not help him.
I held my precious child high for as long as I could, trying to protect him, to shield him from the viscious and unforgiving attack from the wolf but I could hold him no more. My arms screamed in pain and my heart stopped beating as I uncurled my bleeding fingers, gave in and lowered him to the wolf.
This wolf is too strong, and it has taken my child. But I will kick and I will kick until I find a way to unlock its jaws and snatch my baby back.
The wolf was there. Unphased by me as I kicked and kicked it. Crying and screaming, I tried, so very hard to kick it back out that bloody door but it would not go.
The wolf was there. It had been seeking him, stalking and lurking outside knowing full well where its prey was and knowing it was stronger than me.
I'd seen the wolf, I'd seen it lurking there and I ignored it, never thinking it would get in, never thinking it would take my precious son, my sweet darling baby.
But the wolf grew, fed by an unknown force until it was so strong I could ignore it no more. I kicked, I kicked it hard. I told the others and they could also see it but they could not help me, they could not help him.
I held my precious child high for as long as I could, trying to protect him, to shield him from the viscious and unforgiving attack from the wolf but I could hold him no more. My arms screamed in pain and my heart stopped beating as I uncurled my bleeding fingers, gave in and lowered him to the wolf.
This wolf is too strong, and it has taken my child. But I will kick and I will kick until I find a way to unlock its jaws and snatch my baby back.
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