I can't wish for this enough. I have found the most amazing early intervention service for Jonah and I really want, no NEED him to get this. Around the time that Jonah was born our Government announced some funding to help children with Autism. We call it the HCWA (Helping Children With Autism) funding.
Anyway, as part of this funding seven new child care centres are being built (one in each capital city I think) that are able to take 20 children with autism as well as NT (neuro typical - it sounds better than saying 'normal' lol) children. The ASD children will be with the NT children but they will have a team of specialists with them all day every day.
There will be a qualified early childhood teacher, a speech pathologist, an occupational therapist, a physiotherapist, several Dip Ed aides and it is overseen by developmental paediatricians from the Royal Childrens Hospital and researchers from the Autism Research Centre. The children will be in small groups of ten and each ASD child will be among mainly NT children. The program is intense but it is play based and a heap of fun.
It's exactly what Jonah needs but by gosh the places are as rare as hens teeth. Only 20 places in a city the size of Melbourne. The odds are so against us getting a place but it's not impossible. Please, everyone, whatever God or statue, or rock God or thing you pray to, please pray that we get a placement for Jonah. I can feel it in my bones that this is exactly what he needs.
I spoke to the enrolments officer yesterday and she was lovely. She kind of indicated that because Jonah was so young and is now on the waiting list, at very worst he may get a placement there in his final year before school so, in another three years. I want him there now and there is a possibility that he may get a placement now so I'm going to keep my fingers crossed!!
If we get this it means I get to be Jonah's Mummy and not his therapist. I will do what it takes to get this little guy better but my heart breaks at having to do the therapy with him when he is hating it. I suppose it's kind of like being your childs Doctor as well as parent when your child is ill. I don't want to be his therapist. I just want to be his Mummy.
Friday, March 26, 2010
Thursday, March 25, 2010
Gooooo!
For the past week or so I have been trying to teach Jonah how to play Peek-a-boo. I've been covering my face, taking my hands away and saying "Booo!" Sometimes he smiles but mostly he just wanders off, probably wondering what the hell it is that I think I'm doing lol.
Today I was sitting at my computer when I noticed Jonah was standing in front of me. I looked up and he smiled, then he did something incredible. He put his hands over his eyes, took them away and yelled "Gooooo!"
He was playing 'Peek-a-boo! It was the first time he has ever interacted with me without me first prompting it. I picked him up and squeezed him so hard I think I scared him lol. It's our very first breakthrough and I am so very proud of him.
Today I was sitting at my computer when I noticed Jonah was standing in front of me. I looked up and he smiled, then he did something incredible. He put his hands over his eyes, took them away and yelled "Gooooo!"
He was playing 'Peek-a-boo! It was the first time he has ever interacted with me without me first prompting it. I picked him up and squeezed him so hard I think I scared him lol. It's our very first breakthrough and I am so very proud of him.
Tuesday, March 23, 2010
So here we are...
So sorry for not updating for so long. I blame facebook. I do all ofmy updates there but forget that some of you are not on my FB so aren't getting any updates. Now that the initial whorlwind is over I promise promise PROMISE I will be a much more diligent blogger and will update more regularly.
So, last time I left you we were awaiting the results of Jonah's EEG, MRI and for the developmental assessment to be done to see if he did indeed have autism. Turns out he does. They did the developmental test and he passed with flying colours. Passed as in, yes he does indeed meet the criteria for autism. Every single componant of the test proved that.
She tried to get him to give her a ball, he tapped it on the table and ignored her.
He had his back to her and she bounced three balls right next to him whilst calling his name. He completely ignored her.
She gave him a birthday cake and a dolly, put candles in the cake and pretended to blow them out, cut the cake and gave him a piece then put the candles back in. He banged the cake on the table and walked away.
She gave him a book with pictures of animals and asked, "Where's the cow (horse, sheep etc)? He took the book, turned it upside down then put it down and walked away.
She shone a little torch in his face, flashed it two or three times and turned it off. The aim was to get him to ask for more even if it was by throwing a tantrum. When she turned it off he simply walked away. She turned it on again, flashed it and got his attention. As soon as she turned it off he walked away.
She got his attention then pointed to me and said "Where's Mummy." He put his head down and wandered off. The same with "Where's Daddy"
There were other things but I can't remember. After this she sat us down and for a split second both Darling Husband and I thought she was going to say, "What were we thinking? There's nothing wrong with this child!" But that's not what she said.
"OK, so six weeks ago when I saw Jonah he certainly presented as a child who fitted the criteria for Autism. Today when I see him (we both thought this would be followed with, "He just doesn't fit the criteria", the way she ended the last sentence really sounded like it was going to be a "However, today he...") he certainly confirms that diagnosis."
And that was it, we were told. Our baby has autism and there is no going back from here. There is no more wondering, no more hoping, no more wishing. Jonah is autistic. And from the way he passed that test with flying colours, he's definitely not mild.
Jonah's other test results all came back clear. He does have delayed myelination in some areas of his brain but apparently this is a non specific finding and often found in people with autism.
We discussed what avenue we would take as Darling Husband and I had devised a plan that we thought would suit us and we were thrilled when our paed agreed that it was the best way forward for Jonah.
So now we start. I have spent the last week on the phone organising speech therapy, early intervention, play group, parent support, contacing various agencies for funding, contacting Centerlink to register my child as having a disability....that was hard, so very hard.
But on the other hand I also found some fantstic, amazing children who have had some really positive outcomes.
I'll leave it there for now. My head is still a mess but things are getting clearer. As I said, I promise I will be back to update again, very soon and much more regularly!
So, last time I left you we were awaiting the results of Jonah's EEG, MRI and for the developmental assessment to be done to see if he did indeed have autism. Turns out he does. They did the developmental test and he passed with flying colours. Passed as in, yes he does indeed meet the criteria for autism. Every single componant of the test proved that.
She tried to get him to give her a ball, he tapped it on the table and ignored her.
He had his back to her and she bounced three balls right next to him whilst calling his name. He completely ignored her.
She gave him a birthday cake and a dolly, put candles in the cake and pretended to blow them out, cut the cake and gave him a piece then put the candles back in. He banged the cake on the table and walked away.
She gave him a book with pictures of animals and asked, "Where's the cow (horse, sheep etc)? He took the book, turned it upside down then put it down and walked away.
She shone a little torch in his face, flashed it two or three times and turned it off. The aim was to get him to ask for more even if it was by throwing a tantrum. When she turned it off he simply walked away. She turned it on again, flashed it and got his attention. As soon as she turned it off he walked away.
She got his attention then pointed to me and said "Where's Mummy." He put his head down and wandered off. The same with "Where's Daddy"
There were other things but I can't remember. After this she sat us down and for a split second both Darling Husband and I thought she was going to say, "What were we thinking? There's nothing wrong with this child!" But that's not what she said.
"OK, so six weeks ago when I saw Jonah he certainly presented as a child who fitted the criteria for Autism. Today when I see him (we both thought this would be followed with, "He just doesn't fit the criteria", the way she ended the last sentence really sounded like it was going to be a "However, today he...") he certainly confirms that diagnosis."
And that was it, we were told. Our baby has autism and there is no going back from here. There is no more wondering, no more hoping, no more wishing. Jonah is autistic. And from the way he passed that test with flying colours, he's definitely not mild.
Jonah's other test results all came back clear. He does have delayed myelination in some areas of his brain but apparently this is a non specific finding and often found in people with autism.
We discussed what avenue we would take as Darling Husband and I had devised a plan that we thought would suit us and we were thrilled when our paed agreed that it was the best way forward for Jonah.
So now we start. I have spent the last week on the phone organising speech therapy, early intervention, play group, parent support, contacing various agencies for funding, contacting Centerlink to register my child as having a disability....that was hard, so very hard.
But on the other hand I also found some fantstic, amazing children who have had some really positive outcomes.
I'll leave it there for now. My head is still a mess but things are getting clearer. As I said, I promise I will be back to update again, very soon and much more regularly!
Monday, March 15, 2010
Still waiting....
So far we've had the MRI, the EEG, chromosome tests, fragile X testing and general bloods. What we know so far from those results is, Jonah has delayed mylenination in his brain and there are some parts of his brain that are enlarged. We have no other results but we should get them all back on Thursday when we see the developmental paediatrician again.
The EEG was a nightmare. As a Mother it's one of the cruelest things I have ever had to put one of my babies through. It didn't hurt but it was a psychological nightmare. Jonah had only had 40mins sleep on that day before and we didn't let him go to bed until 10.30pm that night. We woke him at 4.30am and kept him awake up until 10am when the test was due to start. Driving in to the hospital we had to keep the windows down, keep singing and playing with him, shaking his arms to stop him falling asleep.
When we got there we pretty much went in straight away. The nurse was a rather unusual character with very little people skills. She put the electrode things on Jonah's head and couldn't understand why that upset him. Forgetting that he is completely sleep deprived, she's a stranger, sticking things on his head, he has sensory issues, my guess is that was pretty pissed off about the whole deal really!
Finally I was able to give him a feed and put him to sleep. The nurse was stunned that we were still breastfeeding at 20 months, and this was a nurse from a childrens hospital for goodness sake! But the worse was yet to come. After 20 mintues of blissful deep sleep, we had to wake him up again! I had no idea this would happen but yep, we had to poke and prod him and wake him up so they could do the flashing lights in his eyes. Why why why they didn't do this at the start and then just let the poor kid sleep is completely beyond me! Finally it finished and we were able to take him home. He spent the rest of the day crying and headbanging.
Jonah is head banging a lot. His forhead is permanently bruised because he is constantly banging it on the floor tiles and the walls. He still shakes his head from side to side a lot, stimming. He has no words yet but we haven't started speech therapy yet either. We're on the bottom of some very long waiting lists.
We really are stuck in limbo. We can't access any survices until we get the definitive diagnosos and most places won't even let you get on a waiting list without that piece of paper. I am so lost, I am sick of making phone calls and getting nowhere!
I'll try to update on Thursday when we see the dev paed again.
The EEG was a nightmare. As a Mother it's one of the cruelest things I have ever had to put one of my babies through. It didn't hurt but it was a psychological nightmare. Jonah had only had 40mins sleep on that day before and we didn't let him go to bed until 10.30pm that night. We woke him at 4.30am and kept him awake up until 10am when the test was due to start. Driving in to the hospital we had to keep the windows down, keep singing and playing with him, shaking his arms to stop him falling asleep.
When we got there we pretty much went in straight away. The nurse was a rather unusual character with very little people skills. She put the electrode things on Jonah's head and couldn't understand why that upset him. Forgetting that he is completely sleep deprived, she's a stranger, sticking things on his head, he has sensory issues, my guess is that was pretty pissed off about the whole deal really!
Finally I was able to give him a feed and put him to sleep. The nurse was stunned that we were still breastfeeding at 20 months, and this was a nurse from a childrens hospital for goodness sake! But the worse was yet to come. After 20 mintues of blissful deep sleep, we had to wake him up again! I had no idea this would happen but yep, we had to poke and prod him and wake him up so they could do the flashing lights in his eyes. Why why why they didn't do this at the start and then just let the poor kid sleep is completely beyond me! Finally it finished and we were able to take him home. He spent the rest of the day crying and headbanging.
Jonah is head banging a lot. His forhead is permanently bruised because he is constantly banging it on the floor tiles and the walls. He still shakes his head from side to side a lot, stimming. He has no words yet but we haven't started speech therapy yet either. We're on the bottom of some very long waiting lists.
We really are stuck in limbo. We can't access any survices until we get the definitive diagnosos and most places won't even let you get on a waiting list without that piece of paper. I am so lost, I am sick of making phone calls and getting nowhere!
I'll try to update on Thursday when we see the dev paed again.
Sunday, February 14, 2010
The minefield.
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.
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.
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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