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.
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