Jonah came home from the LC today singing Twinkle Twinkle Little Star (TTLS). Well, in his own special way he did! He'd not shown us any real sign that he was interested in this song, actually if you remember back I had to stop singing it to him because for some reason it would send him into a rage LOL.
Last week the girls at the LC told me that Jonah love TTLS and would stop in his tracks if ever he heard it. News to me! Anyway, I started to notice that he would often fiddle with his fingers and make a soft humming noise so when he did this I would sing TTLS to him and his face would light up.
Today when he came home he looked at he, flicked his fingers around and started singing what sounded a lot like TTLS. By singing I mean he says "Gah gah gah..." but it had a 'tune' and he was flicking his fingers at the same time. It WAS twinkle! and he was singing it to me. And when he finished he threw his hands up in the air and yelled "Yay!" Clearly very proud of himself, as he should be!
So I sung it to him and the funniest thing happened. He danced! He bopped up and down and side to side (This kid puts my full body squats to shame) and laughed the whole way through. Then at the end he threw his hands in the air and yelled "Yayy!"
Incredibly gorgeous!
Also, this morning when it was time for me to leave him, one of the carers picked him up and for the first time ever, Jonah didn't cry....he waved at me!! I wanted to run up and hug the stuffing out of him but of course that would have defeated the purpose lol.
And on other news, the LC staff were super excited today! They told me that at lunch time when Angie (carer) mentioned it was now time for lunch, Jonah walked to the door, opened it and started trying to bring the lunch trolly into the room! His receptive language skills are coming ahead in leaps and bounds. Tonight Darling Husband called the other children into the dining room, Jonah was in the lounge and he stayed there. Then Darling Husband called out for Jonah and Jonah ran straight out to him. This is huge stuff! He's responding to requests and that means great things for the J man. Receptive language skills are so importand and from what I remember are a marker for IQ.
Tomorrow we also start him on melatonin. This is a naturally occuring hormone that should help him to sleep. It's only available at a few select chemists so we need to go a hunting for it but hopefully we should be able to find some.
All in all, a great day :)
Wednesday, August 4, 2010
Tuesday, August 3, 2010
The Dark Side
I tend to post mainly about Jonah's achievements and progress, mainly because they are exciting and thrill us to bits. But it would be unfair of me not to post the dark side of autism now and then. It's not all beer and skittles and I don't want anyone who reads this blog to think that all children with autism are constantly making their parents hearts burst with their amazing achievements that are continuously forthcoming. It's just not true.
Parenting a child with autism is hard work, constant constant hard work, and it would be irresponsible of me to give the view that it is anything but. I'd hate for any of you reading this to befriend a parent of a child with autism and not give them the respect and support they deserve, simply because the view I paint of life with an autistic child was very unrealistic.
Jonah has good day and bad days, good moments and bad moments, good minutes and bad minutes. In the bad times he zaps every ounce of my being, just to help and protect him mainly from himself.
When Jonah gets angry or frustrated he bangs his head, hard. And I mean HARD! We have tiled floors and it's nothing for Jonah to sit down and literally slam his head into those tiles, repeatedly. He also side swipes his head into the wall by slamming the side of his face into it as hard as he can.
And he bites, usually just me but sometimes himself. This biting and headbanging is always accompanied by screaming and thrashing. We experience at least a few episodes of this a day, and it can last for up to 40 minutes.
It's exhausting, it's heartbreaking, brutal and just bloody exhausting. Watching your child deliberately slam their face into a condrete hard object is just torture.
We also have the general meltdowns that happen every time Jonah expects something to happen and then it doesn't. Trips in the car are a lucky dip! We take off on our journey and Jonah may think we're off to the shops, but if we turn left, which is not in the direction of the shops he will start to scream and thrash violently in his car seat. He throws his head hard, side to side in the chair to bang it as much as he can. He often will just scream himself to sleep in the car seat.
When I try and cook dinner Jonah is always behind me, wrapping himself around my legs and biting them. I have learned to watch very carefully where I step because many times a pot of boiling water has nearly come down over both of us. You'd know when I'm in the kitchen trying to cook or clean. My yelps of pain when his teeth sink into my legs are hard to miss.
And no a gate across the kitchen won't work ;-)
When we go shopping we have no idea how long we have before the meltdown starts. Sometimes I can get all of the shopping done, other times we get two or three items in peace and spend the rest of the time hurtling around the supermarket while Jonah screams in rage because we didn't do something he thought we should have done.
I'm one of those Mum's that people look at and think, "If she'd just give him a bloody good smack he'd shut up," or," Let me have him for a day. He won't be doing that caper again!" But of course we know that's not true. Nothing but years of love, therapy, help and support will ever get him over this.
He doesn't sleep. Well, not much. And his startle reflex is still in full swing so once he's asleep we have to be deathly quiet or he will wake, almost impossible with other children in the house. It's a shit day when the phone rings at sleep time. Night times are a joke. He falls asleep anywhere between 9pm and midnight, wakes 3-5 times a night and is up anywhere from 7-9am. The longest he has ever slept has been 4 hours straight and I can only remember that happening twice in his lifetime. I think he did sleep for six hours once but I can't actually remember him doing that, I just remember telling people about it....I think.
And this is our life. This is what we live with every day. Yes there are days when we don't see a meltdown or his head slamming into the tiles but those days are only a few per month so we must do our best to get through the other days, and help Jonah get through them.
So that's the nutshell. I've tried not to sugar coat it nor exaggerate. This is just how it is, and from what we hear it's a very common life to live for families affected by autism.
Parenting a child with autism is hard work, constant constant hard work, and it would be irresponsible of me to give the view that it is anything but. I'd hate for any of you reading this to befriend a parent of a child with autism and not give them the respect and support they deserve, simply because the view I paint of life with an autistic child was very unrealistic.
Jonah has good day and bad days, good moments and bad moments, good minutes and bad minutes. In the bad times he zaps every ounce of my being, just to help and protect him mainly from himself.
When Jonah gets angry or frustrated he bangs his head, hard. And I mean HARD! We have tiled floors and it's nothing for Jonah to sit down and literally slam his head into those tiles, repeatedly. He also side swipes his head into the wall by slamming the side of his face into it as hard as he can.
And he bites, usually just me but sometimes himself. This biting and headbanging is always accompanied by screaming and thrashing. We experience at least a few episodes of this a day, and it can last for up to 40 minutes.
It's exhausting, it's heartbreaking, brutal and just bloody exhausting. Watching your child deliberately slam their face into a condrete hard object is just torture.
We also have the general meltdowns that happen every time Jonah expects something to happen and then it doesn't. Trips in the car are a lucky dip! We take off on our journey and Jonah may think we're off to the shops, but if we turn left, which is not in the direction of the shops he will start to scream and thrash violently in his car seat. He throws his head hard, side to side in the chair to bang it as much as he can. He often will just scream himself to sleep in the car seat.
When I try and cook dinner Jonah is always behind me, wrapping himself around my legs and biting them. I have learned to watch very carefully where I step because many times a pot of boiling water has nearly come down over both of us. You'd know when I'm in the kitchen trying to cook or clean. My yelps of pain when his teeth sink into my legs are hard to miss.
And no a gate across the kitchen won't work ;-)
When we go shopping we have no idea how long we have before the meltdown starts. Sometimes I can get all of the shopping done, other times we get two or three items in peace and spend the rest of the time hurtling around the supermarket while Jonah screams in rage because we didn't do something he thought we should have done.
I'm one of those Mum's that people look at and think, "If she'd just give him a bloody good smack he'd shut up," or," Let me have him for a day. He won't be doing that caper again!" But of course we know that's not true. Nothing but years of love, therapy, help and support will ever get him over this.
He doesn't sleep. Well, not much. And his startle reflex is still in full swing so once he's asleep we have to be deathly quiet or he will wake, almost impossible with other children in the house. It's a shit day when the phone rings at sleep time. Night times are a joke. He falls asleep anywhere between 9pm and midnight, wakes 3-5 times a night and is up anywhere from 7-9am. The longest he has ever slept has been 4 hours straight and I can only remember that happening twice in his lifetime. I think he did sleep for six hours once but I can't actually remember him doing that, I just remember telling people about it....I think.
And this is our life. This is what we live with every day. Yes there are days when we don't see a meltdown or his head slamming into the tiles but those days are only a few per month so we must do our best to get through the other days, and help Jonah get through them.
So that's the nutshell. I've tried not to sugar coat it nor exaggerate. This is just how it is, and from what we hear it's a very common life to live for families affected by autism.
Monday, August 2, 2010
Friends!
Today Jonah made a friend :) There is a little dude at the LC named Raffaelle. He is a gorgeous little sprite, very friendly, lots of really good talking but still clearly under the ASD umbrella. Raffaelle and Jonah have just started to 'notice' each other and today Jonah's carers told me that they became great mates :)
There is a big white tub in the centre, filled with crumpled up paper and a few little toys. Apparently Raffaelle climed intot he tub and sat down, then Jonah climbed in after him, sat next to him and smiled at him. The staff took a picture and oh my giddy Aunt it was just adorable! These two special little cherubs, sitting together and smiling.
This place is just so good for our boy :)
There is a big white tub in the centre, filled with crumpled up paper and a few little toys. Apparently Raffaelle climed intot he tub and sat down, then Jonah climbed in after him, sat next to him and smiled at him. The staff took a picture and oh my giddy Aunt it was just adorable! These two special little cherubs, sitting together and smiling.
This place is just so good for our boy :)
Sunday, August 1, 2010
Run Fast!!
Luke and Sam like to do this thing where they start at one end of the hallway and run like a bat our of hell until they get to the other end of the hallway and we have to watch "How fast I can run!"
Jonah loves it when they do this and giggles his merry little head off. Today, he joined in! At the end of Sam's run, Jonah assumed the starters position and then started running! We all cheered and yelled "Run fast, Jonah!" And he did, and he did it again and he loved every second of it.
So did we <3 <3 <3
Jonah loves it when they do this and giggles his merry little head off. Today, he joined in! At the end of Sam's run, Jonah assumed the starters position and then started running! We all cheered and yelled "Run fast, Jonah!" And he did, and he did it again and he loved every second of it.
So did we <3 <3 <3
Friday, July 30, 2010
Going Gangbusters
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!
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!
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!
Tuesday, July 6, 2010
Oh forgive me!
My darling blog followers forgive me. It's been so long since I last posted. I'm so sorry about that but my computer broke and all I had to access the internet was an iPhone. Every tried doing a whole post on an iPhone? LOL, not easy!
Well now I have a new computer so I am getting back to blogging :) I will update on Jonah first and then go post something on 5by40.
Well, Jonah is going great and going not so great. He is profoundly autistic and is very developmentally delayed for his age but he is learning and he is gradually catching up.
He still has very minimal speech with almost all words being lost and some recovered, then lost again, then recovered...
His current vocabulary consists of
Mum
Bub
Dadda
Go
Car
Banana (yah yah)
All Gone
So, he does have some words but not as many as he should for his age. Still, we're very happy that he is gaining words still as it appears that the regression has finally stopped :) Yesterday we had an amazing milestone with his receptive language when he went and bought me Sam's jacket after I had asked Sam to go find it. Awesome stuff! It's the first time Jonah has bought me something I've asked for and I wasn't even asking him!!
Tonight for the first time ever and after almost a year of trying, he spood fed himself his dinner! I had been feeding him then got up to get something for him and while I was gone he picked up the spoon and started feeding himself. I was so shocked lol. He ended up feeding himself almost all of his dinner with only minimal help from me. Every time he put the spoon in his mouth we would all clap and cheer and he LOVED it! LOL. He smiled and cheered himself on too haha. I am just so proud of him.
Can you believe he turns 2 this Sunday? I know, pick yourself up off the floor, it's true! LOL. He's still a little shorty though, very comfortable in size one clothes but he's no lightweight, he's 12kg now!
OK, must run, I still have to update my other blog hopefully tonight. I promise I will be back soon, my friends :) Thanks for sticking around if you're all still out there :)
Well now I have a new computer so I am getting back to blogging :) I will update on Jonah first and then go post something on 5by40.
Well, Jonah is going great and going not so great. He is profoundly autistic and is very developmentally delayed for his age but he is learning and he is gradually catching up.
He still has very minimal speech with almost all words being lost and some recovered, then lost again, then recovered...
His current vocabulary consists of
Mum
Bub
Dadda
Go
Car
Banana (yah yah)
All Gone
So, he does have some words but not as many as he should for his age. Still, we're very happy that he is gaining words still as it appears that the regression has finally stopped :) Yesterday we had an amazing milestone with his receptive language when he went and bought me Sam's jacket after I had asked Sam to go find it. Awesome stuff! It's the first time Jonah has bought me something I've asked for and I wasn't even asking him!!
Tonight for the first time ever and after almost a year of trying, he spood fed himself his dinner! I had been feeding him then got up to get something for him and while I was gone he picked up the spoon and started feeding himself. I was so shocked lol. He ended up feeding himself almost all of his dinner with only minimal help from me. Every time he put the spoon in his mouth we would all clap and cheer and he LOVED it! LOL. He smiled and cheered himself on too haha. I am just so proud of him.
Can you believe he turns 2 this Sunday? I know, pick yourself up off the floor, it's true! LOL. He's still a little shorty though, very comfortable in size one clothes but he's no lightweight, he's 12kg now!
OK, must run, I still have to update my other blog hopefully tonight. I promise I will be back soon, my friends :) Thanks for sticking around if you're all still out there :)
Sunday, April 11, 2010
The Great Pretender
Just now I saw Jonah take my iPhone and put it up to his ear. It's the second time he has initiated any pretend play, the first being the sunglasses he likes to put on his face. The great thing about this is that we hadn't yet introduced the telephone into our play routine so he's picked that up all by himself.
To say I am thrilled is an understatement. He'd had such odd day today. We played a lot but he walked off and left me more than he usually does. He was zoning out a lot more and didn't smile as much as usual so to see this spontaneous attempt at pretend play was amazing. And not only did he do it once, he did it twice. A few seconds later he did it again so I know it was deliberate. Gosh I wish I had a jumping up and down cheering emoticon on here!
Jonah also met his new therapist today. Her name is Lea and she is a friend of mine. She has known Jonah since he was born but only as a friend of Mummy's. She is coming over tomorrow so he can get used to her and then she is coming over on Tuesday to watch us in action with the aim of doing some one on one play therapy with Jonah.
School for the other boys goes back tomorrow and I must say I am glad. Not because I don't want them around but because Jonah's therapy is very time consuming and I feel so bad that they are left out. I make sure I include them where ever possible but sometimes they can hinder the therapy. It's hard to balance them all but I think we are doing ok. Once they are back at school there will be less disruptions for Jonah too. Things like television and other people talking are distracting for him so without his brothers around he will hopefully concentrate even more.
He's going forward in leaps and bounds but we still have so far to go. We have to teach him everything that other children learn just by observing others. Jonah needs to be taught every step that others learn so easily. Sometimes it feel so daunting but I know just to take each day one at a time and eventually we will get there.
To say I am thrilled is an understatement. He'd had such odd day today. We played a lot but he walked off and left me more than he usually does. He was zoning out a lot more and didn't smile as much as usual so to see this spontaneous attempt at pretend play was amazing. And not only did he do it once, he did it twice. A few seconds later he did it again so I know it was deliberate. Gosh I wish I had a jumping up and down cheering emoticon on here!
Jonah also met his new therapist today. Her name is Lea and she is a friend of mine. She has known Jonah since he was born but only as a friend of Mummy's. She is coming over tomorrow so he can get used to her and then she is coming over on Tuesday to watch us in action with the aim of doing some one on one play therapy with Jonah.
School for the other boys goes back tomorrow and I must say I am glad. Not because I don't want them around but because Jonah's therapy is very time consuming and I feel so bad that they are left out. I make sure I include them where ever possible but sometimes they can hinder the therapy. It's hard to balance them all but I think we are doing ok. Once they are back at school there will be less disruptions for Jonah too. Things like television and other people talking are distracting for him so without his brothers around he will hopefully concentrate even more.
He's going forward in leaps and bounds but we still have so far to go. We have to teach him everything that other children learn just by observing others. Jonah needs to be taught every step that others learn so easily. Sometimes it feel so daunting but I know just to take each day one at a time and eventually we will get there.
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.
Tuesday, April 6, 2010
Speech Therapy 101
Yesterday we had our very first session with Jonah's new speech therapist. Well, she's Jonah's only ever speech therapist too but she's new to us lol.
She was fabulous, she gave us so many ideas and she really captivated Jonah's attention. The best thing though was that she did a very thorough evaluation of Jonah and what we are already doing with him and she said we were spot on with everything. I am so happy, it just reinforces that we haven't wasted a second of precious time.
She has shown us how to ancourage Jonah to request things. He doesn't have to use words to do this but being autistic means he doesn't automatically know that I am a vessel in which he can 'get things'. Children without autism will show you their empty cup if they are thirsty and there is no water available. Jonah won't do this, he doesn't understand that we are a gateway between what he wants and what he gets. I have to stop pre empting what he wants. I have become very good at this and one of the reasons he doesn't tantrum much is because I am always a step ahead of him, getting him what he needs before he has to ask.
So from now on I have to give Jonah a chance to ask for things. I have to hold his water cup where he can see it and wait until he indicates to me that he wants it. This can be by yelling, that's perfectly ok. What we don't want is for him to see the water cup and walk away because even though I am holding it, it is out of reach.
If you remember back to the developmental test, the paediatrician flashed a torch at Jonah and then stopped. Every time she stopped he would just wander off even though he loved the flashing lights. He did not know that he could indicate that he wanted more lights, so he just moved on.
We are going to use bubbles and balloons. Yesterday Karen (Speechie) had some bubbles, she blew them and said "Ohhh Bubbles!" Jonah giggled as he tried to catch them. Each time one would land on his hand Karen would say "Pop!" Then she stopped blowing them. We watched as Jonah went right up to her, looked her in the eyes and made a sound to her. He didn't speak but he let her know he wanted more bubbles which is exactly what he got. Karen said "Want more? Want more bubbles," and then blew more.
The aim of this is to say what we want Jonah to learn. We don't want to say "You want more bubbles Jonah? because a part of autism is that children will often repeat what they hear and when Jonah wants bubbles he is very likely to come to us and say "Want more bubbles Jonah? Which is not the correct way to ask.
So, where possible we try and say what words we want Jonah to learn. This morning when I fed him breakfast I waited between spoonsfull and when he looked at me I said "Want more," and gave him more.
The idea is to wait for a response but not expect it. If we don't wait for the response we don't give them a chance to try and formulate one. If we expect a response we jeopardise their attention by sitting and waiting too long for a response that is not coming. So we wait a few moments between activites and then we continue on.
We are also going to take pictures of everday objects and people that are familiar to Jonah and we will laminate them with the objects word printed underneath. It's already clear that Jonah's splinter skill is reading. He loves words, loves looking at them, listening to books being read and he loves 'pretending' that he is reading. It's the only pretend skill that he developed on his own.
Until he can talk we will use pictures of objects and try to encourage him to bring them to us when he needs something. It used to be thought that this would hinder speech but current research shows quite the oposite. Communication is much more than words. Communication is interaction, body language, facial expression, interest, seeking out others, hand gestures and many more things. If Jonah can't use words yet that's ok. We can still teach him other methods of communication until he can speak if that day ever comes.
The other thing I want to do is to make an inside cubby for Jonah. I often see him put clothing on his head and I think a lot of this is to do with too much sensory input coming in. I think he does it to block out visual stimulation. He loves tents, cubbies and he loves the sunglasses. I think they take away a lot of sensory input which allowes him to concentrate on other things.
OK so that's our starting point. I'm glad I've blogged it. It is much easier to keep track of.
She was fabulous, she gave us so many ideas and she really captivated Jonah's attention. The best thing though was that she did a very thorough evaluation of Jonah and what we are already doing with him and she said we were spot on with everything. I am so happy, it just reinforces that we haven't wasted a second of precious time.
She has shown us how to ancourage Jonah to request things. He doesn't have to use words to do this but being autistic means he doesn't automatically know that I am a vessel in which he can 'get things'. Children without autism will show you their empty cup if they are thirsty and there is no water available. Jonah won't do this, he doesn't understand that we are a gateway between what he wants and what he gets. I have to stop pre empting what he wants. I have become very good at this and one of the reasons he doesn't tantrum much is because I am always a step ahead of him, getting him what he needs before he has to ask.
So from now on I have to give Jonah a chance to ask for things. I have to hold his water cup where he can see it and wait until he indicates to me that he wants it. This can be by yelling, that's perfectly ok. What we don't want is for him to see the water cup and walk away because even though I am holding it, it is out of reach.
If you remember back to the developmental test, the paediatrician flashed a torch at Jonah and then stopped. Every time she stopped he would just wander off even though he loved the flashing lights. He did not know that he could indicate that he wanted more lights, so he just moved on.
We are going to use bubbles and balloons. Yesterday Karen (Speechie) had some bubbles, she blew them and said "Ohhh Bubbles!" Jonah giggled as he tried to catch them. Each time one would land on his hand Karen would say "Pop!" Then she stopped blowing them. We watched as Jonah went right up to her, looked her in the eyes and made a sound to her. He didn't speak but he let her know he wanted more bubbles which is exactly what he got. Karen said "Want more? Want more bubbles," and then blew more.
The aim of this is to say what we want Jonah to learn. We don't want to say "You want more bubbles Jonah? because a part of autism is that children will often repeat what they hear and when Jonah wants bubbles he is very likely to come to us and say "Want more bubbles Jonah? Which is not the correct way to ask.
So, where possible we try and say what words we want Jonah to learn. This morning when I fed him breakfast I waited between spoonsfull and when he looked at me I said "Want more," and gave him more.
The idea is to wait for a response but not expect it. If we don't wait for the response we don't give them a chance to try and formulate one. If we expect a response we jeopardise their attention by sitting and waiting too long for a response that is not coming. So we wait a few moments between activites and then we continue on.
We are also going to take pictures of everday objects and people that are familiar to Jonah and we will laminate them with the objects word printed underneath. It's already clear that Jonah's splinter skill is reading. He loves words, loves looking at them, listening to books being read and he loves 'pretending' that he is reading. It's the only pretend skill that he developed on his own.
Until he can talk we will use pictures of objects and try to encourage him to bring them to us when he needs something. It used to be thought that this would hinder speech but current research shows quite the oposite. Communication is much more than words. Communication is interaction, body language, facial expression, interest, seeking out others, hand gestures and many more things. If Jonah can't use words yet that's ok. We can still teach him other methods of communication until he can speak if that day ever comes.
The other thing I want to do is to make an inside cubby for Jonah. I often see him put clothing on his head and I think a lot of this is to do with too much sensory input coming in. I think he does it to block out visual stimulation. He loves tents, cubbies and he loves the sunglasses. I think they take away a lot of sensory input which allowes him to concentrate on other things.
OK so that's our starting point. I'm glad I've blogged it. It is much easier to keep track of.
Monday, April 5, 2010
Therapy: April 2010
Please feel free to skip this post. It just need to keep track of where we are at regarding Jonah's progress and therapy.
Currently doing only incidental teaching, approximately 3-4 hours per day. Minimal table top and only with cuting wooden vegetables, singing, pointing.
Songs:
The Wheels on the Bus
Row Row Row Your Boat (another favorite)
Incy Wincy
Twinkle Twinkle (he hates this)
Round and Round the Garden
A Frog Went Walking
Heads and Shoulders (his favorite)
Each song sung 5-6 times per day
Games:
Peek a boo
Sunglasses
Throwing on the bed
Upside down baby
Where's Mummy/Daddy
Played 5-6 times per day.
Activities:
Cutting wooden fruit
Where's your nose/eyes/ears
Where's Jonah? (Mirror Game)
Pointing (objects in books)
Reading books (Hairy McLairy current fave)
Trampoline jumping
Peek a boo in play house
Ta Mummy/Daddy (taking turns passing object back and forth)
Hello/Goodbye (greetings)
Want more
Introducing:
Shapes
Puzzles
Give me
Show me
Point to (Daddy/Mummy etc)
Colours
Starting speech therapy 06/04/10
Starting Playgroup 12/04/10
Starting My Time 14/04/10
Currently doing only incidental teaching, approximately 3-4 hours per day. Minimal table top and only with cuting wooden vegetables, singing, pointing.
Songs:
The Wheels on the Bus
Row Row Row Your Boat (another favorite)
Incy Wincy
Twinkle Twinkle (he hates this)
Round and Round the Garden
A Frog Went Walking
Heads and Shoulders (his favorite)
Each song sung 5-6 times per day
Games:
Peek a boo
Sunglasses
Throwing on the bed
Upside down baby
Where's Mummy/Daddy
Played 5-6 times per day.
Activities:
Cutting wooden fruit
Where's your nose/eyes/ears
Where's Jonah? (Mirror Game)
Pointing (objects in books)
Reading books (Hairy McLairy current fave)
Trampoline jumping
Peek a boo in play house
Ta Mummy/Daddy (taking turns passing object back and forth)
Hello/Goodbye (greetings)
Want more
Introducing:
Shapes
Puzzles
Give me
Show me
Point to (Daddy/Mummy etc)
Colours
Starting speech therapy 06/04/10
Starting Playgroup 12/04/10
Starting My Time 14/04/10
Chocolate Monster
Today we had a breakthrough. Jonah has never once bought me anything he is interested in, he's never shown me something he likes, never done a silly trick to make me laugh. Apart from our one and only game of 'Peek-A-Gooooo' he has never initiated play with any of us. It's heartbreaking but it is autism and it is what it is.
We play with him relentlessly, sometimes until we're exhausted. It's part of incidental teaching and we do it in hope that he will one day pick it up and will reciprocate. It's a dream I am waiting to turn into reality.
Today we had our dream come true. Not once, but twice. One of the things Jonah enjoys is wearing Sams great big green sunglasses. We put them on his face and all exlaim with joy, "Oh look at Jonah! Look at Jonah and his lovely green glasses!" We ooh and we ahh for the whole two seconds that Jonah will wear the glasses and we repeat until he has had enough. He smiles when we do this so we know he is enjoying it.
This morning as I sat sipping my cup of tea my Darling Husband next to me on his computer (he's working from home), Jonah wandered up, looked at me and smiled a huge baby Jonah smile and handed me one pair of bright green glasses. I was so stunned that for a second I didn't know what to do with them. He has never 'given' me anything, not once, not ever has he come to me and handed me something. But today he did and he handed me something that he wanted me to do with him. He wanted to wear those big green sunglasses and he wanted us to ooh and ahh over him. So we did. I popped the glasses on his beaming little face and we all oohed and ahhed, "Ohh look at Jonah! He looks wonderful in his glasses!" And Jonah smiled a beaming smile and let us play with him for a whole two minutes.
I'm not sure who's smile was bigger, Jonah's or ours.
To top it off, as it today couldn't get any better not long after playing sunglasses with us, Jonah found the wrapping of an empty easter egg on the floor. Easter has just finished and Jonah has had his official initiation into the world of chocolate and he kinda loves it!
Jonah put the wrapper in his mouth, realised there was no chocolatey goodness coming forth so spat out the wrapper into his hand, wandered over to me held it out, looked at me and yelled, loud!
He has no words yet but if he did that yell would have said, "Do you see the problem here, Mother? This lovely looking wrapper is empty and is no good to me. What I need now is one that is not empty, but is full of chocolately goodness and as I am only two feet tall and cannot reach into that great big refridgerator I request that you do it for me! Now off you go and get me some chocolate."
Darling Husband looked up and exclaimed in excitement! "He bought you a wrapper! It's something to show you! This is fantastic, he's learning and interacting. Get the boy some chocolate STAT!"
And so I did. I fed Jonah two small chocolate Easter eggs and I don't think I have ever been so happy to see my baby eat junk food LOL
We play with him relentlessly, sometimes until we're exhausted. It's part of incidental teaching and we do it in hope that he will one day pick it up and will reciprocate. It's a dream I am waiting to turn into reality.
Today we had our dream come true. Not once, but twice. One of the things Jonah enjoys is wearing Sams great big green sunglasses. We put them on his face and all exlaim with joy, "Oh look at Jonah! Look at Jonah and his lovely green glasses!" We ooh and we ahh for the whole two seconds that Jonah will wear the glasses and we repeat until he has had enough. He smiles when we do this so we know he is enjoying it.
This morning as I sat sipping my cup of tea my Darling Husband next to me on his computer (he's working from home), Jonah wandered up, looked at me and smiled a huge baby Jonah smile and handed me one pair of bright green glasses. I was so stunned that for a second I didn't know what to do with them. He has never 'given' me anything, not once, not ever has he come to me and handed me something. But today he did and he handed me something that he wanted me to do with him. He wanted to wear those big green sunglasses and he wanted us to ooh and ahh over him. So we did. I popped the glasses on his beaming little face and we all oohed and ahhed, "Ohh look at Jonah! He looks wonderful in his glasses!" And Jonah smiled a beaming smile and let us play with him for a whole two minutes.
I'm not sure who's smile was bigger, Jonah's or ours.
To top it off, as it today couldn't get any better not long after playing sunglasses with us, Jonah found the wrapping of an empty easter egg on the floor. Easter has just finished and Jonah has had his official initiation into the world of chocolate and he kinda loves it!
Jonah put the wrapper in his mouth, realised there was no chocolatey goodness coming forth so spat out the wrapper into his hand, wandered over to me held it out, looked at me and yelled, loud!
He has no words yet but if he did that yell would have said, "Do you see the problem here, Mother? This lovely looking wrapper is empty and is no good to me. What I need now is one that is not empty, but is full of chocolately goodness and as I am only two feet tall and cannot reach into that great big refridgerator I request that you do it for me! Now off you go and get me some chocolate."
Darling Husband looked up and exclaimed in excitement! "He bought you a wrapper! It's something to show you! This is fantastic, he's learning and interacting. Get the boy some chocolate STAT!"
And so I did. I fed Jonah two small chocolate Easter eggs and I don't think I have ever been so happy to see my baby eat junk food LOL
Chasing the Birds.
Yesterday we took the boys to the museum. We go there often and our older two love it. There is so much for children to see and do and we would need a week to see it all so they never get bored of it.
Yesterday I took Jonah out of the pram and let him wander around in the play areas. I filmed him on my iPhone and when I get my new computer (this one is borrowed) I will start putting some of that video footage on here.
If you ever wondered what autism looked like walking around you'd have seen it yesterday. Jonah flitted from toy to toy, thing to thing, didn't really play with anything, didn't notice or care to notice anyone around him and he never looked back to see where I was when he wandered off. Sometimes he'd see objects but never the person attached to them. At one stage he saw a big tower of blocks but he didn't see the boy that built them. He went for the blocks and unlike other toddlers who just want things because they are toddlers and that's what toddlers do, Jonah was just oblivious to the fact that this boy was there at all.
The saddest thing though, twice yesterday there were flocks of birds on the ground. All of my other boys would have chased through that flock, squealing with excitement as though they might even catch one. Jonah didn't care. The birds were there, all around him and he didn't even seem to notice. I wanted him to chase them, to run and them and gasp with delight as they flew off into the sky. I wanted him to tell him no, Jonah leave the birds alone, don't bother them knowing all the while that he could never catch one. But I didn't say it because he didn't chase them.
I filmed the play area, all of the other children running, chasing, squealing, catching, climbing and crying. And then there was Jonah, wandering away, never looking back, picking up small twigs studying them for a moment and dropping them to wander off again. He didn't care for the other children and to him they may have well been statues. I was so sad as I filmed him. He looked so different from the other children. To those who do not know he has autism he would have looked like a delightful quiet little boy, happy to entertain himself.
Oh how I wish.
Yesterday I took Jonah out of the pram and let him wander around in the play areas. I filmed him on my iPhone and when I get my new computer (this one is borrowed) I will start putting some of that video footage on here.
If you ever wondered what autism looked like walking around you'd have seen it yesterday. Jonah flitted from toy to toy, thing to thing, didn't really play with anything, didn't notice or care to notice anyone around him and he never looked back to see where I was when he wandered off. Sometimes he'd see objects but never the person attached to them. At one stage he saw a big tower of blocks but he didn't see the boy that built them. He went for the blocks and unlike other toddlers who just want things because they are toddlers and that's what toddlers do, Jonah was just oblivious to the fact that this boy was there at all.
The saddest thing though, twice yesterday there were flocks of birds on the ground. All of my other boys would have chased through that flock, squealing with excitement as though they might even catch one. Jonah didn't care. The birds were there, all around him and he didn't even seem to notice. I wanted him to chase them, to run and them and gasp with delight as they flew off into the sky. I wanted him to tell him no, Jonah leave the birds alone, don't bother them knowing all the while that he could never catch one. But I didn't say it because he didn't chase them.
I filmed the play area, all of the other children running, chasing, squealing, catching, climbing and crying. And then there was Jonah, wandering away, never looking back, picking up small twigs studying them for a moment and dropping them to wander off again. He didn't care for the other children and to him they may have well been statues. I was so sad as I filmed him. He looked so different from the other children. To those who do not know he has autism he would have looked like a delightful quiet little boy, happy to entertain himself.
Oh how I wish.
Friday, March 26, 2010
Oh please! Oh please please please please PLEASE!!
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.
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.
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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