Wednesday, August 4, 2010


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 :)

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.

Monday, August 2, 2010


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 :)

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

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!

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!

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

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 :)