Just an update...

... and a thank you to my wonderful friends for their kind words on my last post.

Well almost two weeks in and there are mixed reports. On the sleep front there has been a miraculous turn around and he is now sleeping between 8 and 10 hours a night and boy does it show. My little man, who for years has had dark purple shadows under his eyes, is waking up clear eyed and bright faced almost every morning! We are in a good routine now where he takes his meds at 7pm and then has a bath and reads to me and then normally he's asleep between 8 and 8:30. None of this midnight nonsense. For the first few nights I honestly didn't know what to do with myself. Interestingly enough, I didn't give him meds one night as we went out for dinner with my folks and I didn't want him nodding off at the dinner table. We were out from 6pm-9pm then got home and all went to bed - I checked on him at 01:30am and he was wide awake.

Not such good news on the mood stabilising drug front. He's had up days, down days, inbetween days. This was not the plan. There have been massive issues with behaviour at school and they have seen an aggressive, angry, mean side of thim that previously had been under control. Crisis talks with the school and our behaviour therapist and it's a wait and see approach. Fingers crossed the next week or so goes well!

As for me - well between work & kids there isn't much time for anything else. Would love to have some crafty things to share but there just isn't time lately - I'm living vicariously through buttontree lane, kuka and knitting sprout with their sewing/cooking/knitting achievements!

Fork in the road

The past few weeks have seen us come to a real fork in the road with therapy for Izaak. He has previously been assessed for a program called The Extra Lesson and to be perfectly honest I don't think I would have known about the program if it wasn't for a friend who is a practitioner and is just getting herself set up after having time off to have her own babies.
During the assessment Izaak was his usual combative, defiant, non-compliant self. It was tedious. Anyway, the assessment basically showed all the things that I knew about him as well as a few extras. He has too much cranial pressure. And he has auditory processing issues. The cranial pressure is being worked on by a local osteopath who has made some interesting observations about my little man. His hips are not aligned and as a result his neck is compensating. We are progressing well and will see him weekly for a while to see if we can get it sorted out. Back to The Extra Lesson though - they recommend an auditory program to help him with his auditory issues which I'm okay with - until I heard the cost is upwards of $1000.00. I don't want to sound like a stingy parent and I do have the funds to cover the cost of this treatment but I am extremely wary of shelling out that sort of cash on a program that doesn't have main stream science or the ASD community behind it. This is along the 'alternative' therapies stream and while I am willing to try almost anything to help my little boy, I'm not sure that it is really the best option given that kind of money would buy us almost 20 occupational therapy sessions.
So totally opposite to that philosophy - we went to see the paediatrician yesterday afternoon who couldn't believe that we had made it this far without medications. He has prescribed Izaak a mood stabilising drug and a sedative. Given that he has really poor sleep patterns I'm all for the later - he goes to bed between 7:30 - 8:30 and at 11:30-midnight is still wide awake. So tonight I gave him the first dose at 7:30 and by 8:20 he was sound asleep. Amazing.

Although it's working (well it's only night one so I'm cautious of saying that but after so many of unsettled nights, even one is 'working'!!) I'm struggling with the social stigma and judgements of people in regards to medicating my eight year old. Effectively I am giving my child psych drugs. I don't like how that fits, how it feels but I am coming around to the fact that I have to do what is best for him. As the paed and my family have all said - there is potential that is being hid away behind all the behavioural issues. Hopefully, the medication plan will lessen the behaviours so we can get more of the learning in. Tonight he read me two home readers that I thought were at the level he needed. He read both without missing a single word. I need to get over myself. If only it were that easy!

Who would've thought...

...that these could solve the penis issue for my boy??


I know it's a 'typical' boy thing to touch their penis but Izaak was doing it more and more and more. As he gets older it becomes more socially unacceptable and it had started becoming an issue at school as well. I know that this is sensory/autism related and as a nail biter, I know what it's like to have a habit that you are doing but don't conciously know you are doing and I think that is exactly what was happening with him. Subconsciously, whenever he was getting stressed/anxious the hand would wander straight to the pants.


Many moons ago a speech therapist suggested that we get a bracelet for him that he could fiddle with when the anxiety/stress became an issue. We did but he wouldn't wear it because it pulled at the hairs on his arm so it lasted all of about 10minutes before it was off and in the bin. The penis issue has gotten worse and worse over past weeks so when we were looking for hair ties and spotted these old phone cord type thingies in the hair isle I immediately knew I needed some. And knew exactly what I was going to use them for. He headed off to school today with 2 wrapped around his wrist and with me talking alot about not touching himself. I pick him up at the gate this afternoon with great reports from his teacher that the penis issue wasn't an issue at all today. I'm going back to the $2 shop tomorrow to buy the rest of the stock - just in case!!


Fingers crossed the penis issue is over for good now!

Through my eyes

I haven't blogged alot about Izaak or our families journey through the joys and hells that are Autism Spectrum Disorder but when I heard this song I knew that I wanted to share it with all of you. I think I was crying before the first verse was over because as a parent and particularly a single mamma it hurts like hell that I can't understand, no matter how hard I try, his world. I can't see what he sees or think how he thinks and that frustrates both of us (equally at times!). I'd like to think that the lyrics of this song represents all the things that Izaak would like to say to me at one time or another.

You can buy this song from here and I'd strongly encourage anyone and everyone to purchase as all profits from the sale of this song go to Aspect - the main Australian body for the research and development of therapy and research strategies for ASD. These are the lyrics to the song...

See the world through my eyes, it changes shape and it changes size
It's not quite the world you see
If you could find a way to look around inside my mind
Maybe you would understand me

I'm not blind but I can't always see
I'm not deaf but things can sound strange to me
I'm not trapped but it's hard to feel free
Imagine what it's like to be me

It's hard for me to try to think things through or talk like you
Everything can be a blur sometimes but if you walk along beside me
Hold my hand and guide me together any mountain we can climb

I'm not blind but I can't always see
I'm not deaf, but things can sound strange to me
I'm not trapped but it's hard to feel free
Imagine what it's like to be me

I'm dreaming of my future and it's brighter then you know
I'll get there on a different road when I am ready to go

I don't need pity, I don't need tears
I just need someone to help me understand my fears
Show me you believe in me, let me know I'm okay
Help me feel safe in the world and I will find my way

I'm not blind, but I can't always see
I'm not deaf, but things can sound strange to me
I'm not trapped but it's hard to feel free
Imagine what it's like to be me