Thats our boy! Jonah is just amazing. In the two weeks that he's been at the LC he has come ahead in leaps and bounds. On Monday his carers were so excited, not only had Jonah shown interest in another child, he had gotten so in this boys face that he (the other child) reciprocated and apparently it was the FIRST time EVER that this little boy had shown interest in anyone. The carers couldn't wait to tell me but were moreso excited about telling the other little boys Mum lol. Seems Jonah does play nicely with others!
From what they said, Jonah was following this little guy around but was being completely ignored in return. The little guy stopped walking and looked down, Jonah walked around to the front of him, knelt down and looked up into the boys face. This caused them both to burst into laughter, something the staff had never seen from the other little guy.
Great stuff Jman!
And, I am happy to report that Jonah regularly brings us his cup to be filled and if there is any mention whatsoever of the C.A.R (we don't say that word!) he runs around gathering all of our jackets and shoes so we can hurry the hell up to go for a ride in the C.A.R :P
I'm getting a new camera soon and this blog will soon be fillled with pics!
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Friday, July 30, 2010
Sunday, July 25, 2010
Centre of Attention
This week Jonah started at his new Learning Centre (LC). It's an autism specific LC which has been purpose built to enhance the learning experience of children with autism. I found out about it with my stealthy Google skills and badgered the poor coordinator until she let me know how to get Jonah enrolled (he didn't jump the queue, there are still spaces left) which we did and he started last Monday.
I will put some pictures up of the centre if I get a chance but I just wanted to say that it is truly a wonderful place. My little Bear loves it there and there is so much for him to do. There are three staff and currently only 5 children attending so the child staff ratio is almost 1:1. The rooms have just finished completion and have been purpose build to ensure that children attending have the best opportunity to learn in areas where their autism makes it almost impossible.
They are SO accomodating. Honestly, what Jonah wants, Jonah gets. What Jonah needs, Jonah gets. If he doesn't want lunch at lunch time they will feed him when he is ready. If he doesn't want to eat from their menu they will get him something else (healthyof course), if he doesn't want to sleep a carer will attend to him while the other children sleep. The centre has a special 'chill out' room where the childern can go if they are over stimulated. It has big bean bags, dim lights and lots of books and cuddle toys. There is an occupational therapist and speech therapist there at all times and it is staffed by qualified teachers and is overseen by paediatricians and our states largest childrens hospital.
Honestly, it's an ASD child (and parents!) dream come true! Jonah started on Monday and he loves it. He's none too happy when we leave which we have only done for no more than an hour, but when we get back he is happy and playing. The tears are just to make Mummy feel awful LOL. This week we will be increasing his hours to three hours a day to see how he goes. He will be going full time as soon as he is integrated, probably in about three weeks.
In other news we had a visit from our state Early Intervention (EI) team this week and they noticed a huge difference in Jonah's eye contact. Because we see him all day every day its hard for us to be objective when it comes to how he is progressing but the EI team hadn't seen Jonah for a month and couldn't believe how much more eye contact he had. He is now looking at people from a distance and smiling at them. He often holds the gaze until he walks to the person and is picked up. He is also bringing people objects that are relevant to the situation, for example if he hears us saying we're going out soon, Jonah will run and get his shoes or his jacket and give it to one of us. This is pretty huge news!
What we really need to work on with him though is his speech and his joint attention. He still doesn't mimick us and has no idea about taking turns. He also doesn't seek other people out to play with. At the LC he will wander around the perimeter of the room and yard, not paying any attention to the other children or staff. However, more and more he is playing appropriately with toys, not just carrying them around and dropping them. He will often use toys as they are meant to be used. For example with shape sorters he will attempt to get the shapes into the right hole and if he can't he will try another hole. He is also sitting on bikes and trying to push them along.
And best of all, he's starting to dance! I remember saying to his paediatrician back in February that Jonah never danced and I knew it was something he should be doing. Well, he has a big Iggle Piggle who dances and he's started to dance too when Iggle Piggle is getting his groove on. The cuteness is astounding lol.
Again, I promise some pics to come soon!
I will put some pictures up of the centre if I get a chance but I just wanted to say that it is truly a wonderful place. My little Bear loves it there and there is so much for him to do. There are three staff and currently only 5 children attending so the child staff ratio is almost 1:1. The rooms have just finished completion and have been purpose build to ensure that children attending have the best opportunity to learn in areas where their autism makes it almost impossible.
They are SO accomodating. Honestly, what Jonah wants, Jonah gets. What Jonah needs, Jonah gets. If he doesn't want lunch at lunch time they will feed him when he is ready. If he doesn't want to eat from their menu they will get him something else (healthyof course), if he doesn't want to sleep a carer will attend to him while the other children sleep. The centre has a special 'chill out' room where the childern can go if they are over stimulated. It has big bean bags, dim lights and lots of books and cuddle toys. There is an occupational therapist and speech therapist there at all times and it is staffed by qualified teachers and is overseen by paediatricians and our states largest childrens hospital.
Honestly, it's an ASD child (and parents!) dream come true! Jonah started on Monday and he loves it. He's none too happy when we leave which we have only done for no more than an hour, but when we get back he is happy and playing. The tears are just to make Mummy feel awful LOL. This week we will be increasing his hours to three hours a day to see how he goes. He will be going full time as soon as he is integrated, probably in about three weeks.
In other news we had a visit from our state Early Intervention (EI) team this week and they noticed a huge difference in Jonah's eye contact. Because we see him all day every day its hard for us to be objective when it comes to how he is progressing but the EI team hadn't seen Jonah for a month and couldn't believe how much more eye contact he had. He is now looking at people from a distance and smiling at them. He often holds the gaze until he walks to the person and is picked up. He is also bringing people objects that are relevant to the situation, for example if he hears us saying we're going out soon, Jonah will run and get his shoes or his jacket and give it to one of us. This is pretty huge news!
What we really need to work on with him though is his speech and his joint attention. He still doesn't mimick us and has no idea about taking turns. He also doesn't seek other people out to play with. At the LC he will wander around the perimeter of the room and yard, not paying any attention to the other children or staff. However, more and more he is playing appropriately with toys, not just carrying them around and dropping them. He will often use toys as they are meant to be used. For example with shape sorters he will attempt to get the shapes into the right hole and if he can't he will try another hole. He is also sitting on bikes and trying to push them along.
And best of all, he's starting to dance! I remember saying to his paediatrician back in February that Jonah never danced and I knew it was something he should be doing. Well, he has a big Iggle Piggle who dances and he's started to dance too when Iggle Piggle is getting his groove on. The cuteness is astounding lol.
Again, I promise some pics to come soon!
Thursday, April 8, 2010
And in todays news...
Today Jonah and I were sitting together on the bed, facing each other. I've been doing a set of nursery rhymes with him a few times a day and we usually do them on the bed...this allows me to toss him all about on the big fluffy pillows which he loves.
One of the rhymes we do is 'Row, row, row your boat' where I sit oposite him, hold his hands and push him back and forth while we 'row' then I shake his arms up and down quite vigorously during the 'merrily merrily' parts. He loves this so much.
Today we were playing on the bed and I sat him oposite me but before I could indicate what we were going to do he grabbed both of my hands, looked at me and smiled, then after a slight pause he started rocking back and forth, smiling. He was playing Row your boat and he initiated it!
It's such an awesome achievement and it means he has learned that we are interactive, that we can do things for him and that he can expect things from us. I was so excited I think I got a bit carried away. We sung it about ten times lol
Jonah also has a Fisher Price aquarium. It's a little plastic fish tank that lights up and plays bubble sounds and music when you rock it or drop on of the three plastic fish who call it home into it. I bought it to teach him to post things as up until now all he was doing was removing things out of places but not putting anything in.
He loves the aquarium because it lights up and flashes and today I actually saw him putting the fish in to the tank. I sat with him and said 'Fish in', 'Put fish in,' and he smiled at me and did exactly that. After a while he decided to test his slam dunk skills and launch the fish at the aquarium from a distance and I must say, his aim was pretty good LOL.
He is learning. I know we have a hell of a long way to go but this is the blessing of getting this so early, these months of waiting are not waisted. Usually at this age with autism you're in a holding pattern, specialists are telling you to 'wait and see' well meaning friends and family are telling you that such and such's boy didn't speak until he was 5 and he is perfectly fine and you're not accessing services because you don't have a diagnosis, only rapidly fading hope.
This is why, amongst all of this heartache we still have hope. Jonah is so young, these months spent working with him and teaching him are laying a strong foundation that so many miss out on.
Yes, we have a long hard road ahead of us but we're slowly but surely smoothing the way to get there.
One of the rhymes we do is 'Row, row, row your boat' where I sit oposite him, hold his hands and push him back and forth while we 'row' then I shake his arms up and down quite vigorously during the 'merrily merrily' parts. He loves this so much.
Today we were playing on the bed and I sat him oposite me but before I could indicate what we were going to do he grabbed both of my hands, looked at me and smiled, then after a slight pause he started rocking back and forth, smiling. He was playing Row your boat and he initiated it!
It's such an awesome achievement and it means he has learned that we are interactive, that we can do things for him and that he can expect things from us. I was so excited I think I got a bit carried away. We sung it about ten times lol
Jonah also has a Fisher Price aquarium. It's a little plastic fish tank that lights up and plays bubble sounds and music when you rock it or drop on of the three plastic fish who call it home into it. I bought it to teach him to post things as up until now all he was doing was removing things out of places but not putting anything in.
He loves the aquarium because it lights up and flashes and today I actually saw him putting the fish in to the tank. I sat with him and said 'Fish in', 'Put fish in,' and he smiled at me and did exactly that. After a while he decided to test his slam dunk skills and launch the fish at the aquarium from a distance and I must say, his aim was pretty good LOL.
He is learning. I know we have a hell of a long way to go but this is the blessing of getting this so early, these months of waiting are not waisted. Usually at this age with autism you're in a holding pattern, specialists are telling you to 'wait and see' well meaning friends and family are telling you that such and such's boy didn't speak until he was 5 and he is perfectly fine and you're not accessing services because you don't have a diagnosis, only rapidly fading hope.
This is why, amongst all of this heartache we still have hope. Jonah is so young, these months spent working with him and teaching him are laying a strong foundation that so many miss out on.
Yes, we have a long hard road ahead of us but we're slowly but surely smoothing the way to get there.
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!
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.
Subscribe to:
Posts (Atom)