OT 12 months on..

Well today Thomas had his normal monthly OT session. It went amazing. The change in the last 12 months has been incredible. He pretends on the way he hates going, but once he gets there he gets straight to it. Following the instructions and rules.

Cathie his OT is amazing with him and he has come along leaps and bounds. Even just sitting still between activities he does so well. He knows where to wait and what is expected of him there.

His balancing and strength skills have even improved. I was so proud of him today. I just wish I had gotten more photos today, even Cathie mentioned we should have video taped it. Sigh. Hindsight. Next month I will remind her if she wants me to do some videoing and see what happens.

Sitting in the waiting chair.

Turning 4

Yes it has happened he has turned four. Gone from that little baby to an attitude filled 4 year old! Oh boy. They say two is bad. Four they talk back with sass and smartness. Golly gosh. I sense we are in for some huge fun (and lots of wine for mummy) in the coming months.

One big thing happened. We brought him a bike, unsure how he would go as he never grasped the trike idea or had the muscle tone to manipulate them because of the angle at which they sit on them. So imagine our surprise when he grasped riding a bike within the first few days. What a proud and happy mummy I was this sunny Saturday afternoon I took him out on his bike.

Technology and Potty Training.

Well with potty training boot camp on this weekend we have been looking at different ways to entertain this child whilst mostly indoors (the weather has been on the ordinary at best side.) So technology has come into play, especially seeing Saturday morning the wooden train set went on holidays after they were watered with Pear juice....

So out comes the Wii. Thomas got to create his own character, he also likes to change it's clothes daily too it seems. We have worked out games like baseball are best and he is an awesome pitcher, if we can keep him on task. In the end it becomes an amusing adventure of daddy batting and Thomas pitching as a team. Funny. competitive and not mummies domain.Oh and lots of, You can pitch the ball now Thomas. Any time Thomas. I think he is slowly getting it. But gets so easily off track.

But the Monday night funny comes as I was cooking dinner and Thomas found the iPad charging by my chair.
Next he come running up the hall way. Shouting need potty, good program on. hearing bob the builder on TV I thought. Ok. Bob phase again. Nope he was watching Thomas the Tank Engine clips on You Tube. So he grabs his potty to take back so he could watch the You Tube clip. I think I need to tell him about Pause and replay.

Proud moment. He recognised he needed to go. And whilst typing the last paragraph he did it again!

Two steps forward...

Many steps back.  We seem to be having a lot of these moments lately where we seem to be making awesome progress, then suddenly regress right back. This is in both areas of behaviour, toilet training and communications. All of which is probably related to each other.

We will have a couple of days where you think what ASD? Then a night mare run. Sleep is also on the decline again for every body. It just does not seem fair.

This week we are learning that appalling behaviour is not going to be accepted. Deliberately destroying items is not going to go down well, and toys will be taken away. Tough love is happening. Explanations are  in place and so are the expectations. Poster making here I come!!

Potty training is also still the bug bear and getting tough here. Deliberate defiance at home is happening and mummy is not happy as he is a perfect angel at kindy and school. (He can do this, but for what ever reason won't self initiate at home and gets aggressive if we do toilet timing with him.)

This last month or so we have also been dealing with a couple of virus's here which does play a part in the down slide. But it will not get the better of us. It can't!

We have been making progress with food though. Eating things that are not normally eaten like savoury mince. Turned out even though it was slimy (his words) it was very nice. So it seems in the words of Dr Seuss "Try it, Try it, you may see, Try it try it, you may like it".

The safari breakfast.

May madness

May has been an incredible month for Thomas. We have been on a short break, started a new diet, endured a super moon, (yep so far this was just in one weekend), started using weighted products and started to read sight words and letters.

It has also been a month to reflect on how far we have come since his diagnosis 12 months ago.

* Meltdowns have lessened to a degree
* Public meltdowns have at least halved.
* Toilet training has finally started. - we are not even close to saying he is perfect at it. But we are consistently working through this.
* We can now do a quick shop (or even a quick full shop) with out too much of an issue.
* Thomas can now verbalise occasionally what is bugging him, ie the fluro lights was a big one. Yes he can hear them and knowing this makes a huge difference.
* Early intevention is well established now.
* Reports are now starting to come in and the advancements and delays in various areas are now being spoken about.
* He has eaten mashed vegetables (not just steamed or pureed).

Sleep has only slightly improved. We can now get him to sleep, but still dealing with middle of the night/Early hours of the morning wakings. One day this may start to improve, but simply this maybe as good as it gets for a little while longer, only time and lots of patience will tell.

But the one thing that every one agrees on, he is a happy and very active little boy, with good manners - even when at his most defiant moments.

Some snaps from our short break!

Autism awerness month. APRIL

There was lots of going blue, coloured hair and even blue lights this month. I was even in a newspaper or two... LOL

 Our first blue morning Tea at the support group. posing with two of the young men of the group for the news papers.

 Blue haired mummy with her little man.

 Cup cakes and chocolate.... Great mix.

 The Go Blue Launch in the Queen street Mall Brisbane.

 Daddy even came down during his lunch break.

 Tender moment - maybe - but more like removing Vegemite's from a face and Thomas playing with the blue hair.

 Great mates, wanting to join in, but not sure how.

 Our frount door. Thomas rubbed the liquid chalk before it dried.

 He found my wig in the car.

In blue for School. The red thing on his chest is a chewy necklace. Great for stimming and perfect solution to needing a dummy still.

Spinning and stimming

Stimming and spinning are very much traits of Aspergers. People with Autism and Aspergers use these ticks and quirks to self center and concentrate. After a fairly stressful March we have noticed Thomas picking up the notch of stimming and spinning.

Thomas has taken to walking around the edges of room or around one item of furniture. This would be dizzying for some people but for other it helps them focus and make sense of their worlds. He has also been making annoying sounds (very loudly as nothing with Thomas is quiet!) repetitively. Lining toys up and having them in just the right order is not uncommon.

Today was the arm flapping and airplane motions complete with sound effects naturally, whilst we shopped. Today there was not hiding the fact he was just no ordinary boy in a pram. Which is always fun when you have shopping to do.

How we lessen his anxiety when out and about - iPad for distraction, head phones for positive noise input. Sun shade and covering blanket for light reduction. This sometimes works, other times he simply can't focus enough for it to work.

Other activities to lesson his stimming or creating a positive stimming activity is the Trampoline. This also has the added advantage of  using up excess energy.

March Maddness

It has been a crazy month here and not all for the right reasons. The last blog post was written when we were given some much needed respite from Thomas's Grandparents. We really enjoyed this time until suddenly this mummy fell ill. It was the start of hospital visits for the parents.

During this time saw a major regression in toilet training and some great frustration for all the hard work we tried to achieve. But understandably the anxiety took over in this little man. But we are working our way back to where we were slowly.

Stimming has also been pretty high up there. Showing signs to us that his world is not doing so well right now. But in the coming weeks it is all going to be about routine, routine and more routine. Even if the school holidays about to decend upon us.

Back to making more and more pecs cards as well to help with the routine and changes as there are going to be a few with school holidays coming.

We have also noted at lot more lining up of his toys. Whilst this is a classic asd trait it was one that was not really common for Thomas to do this with every toy until the last few weeks. I have tried taking photos but as soon as the camera comes out he deliberately messes them up if I get caught.

We have also noted whilst he knows how to say his alphabet and count out loud to 13 perfectly well he has no ability to recognise the written letters that well. so we have started the letter of the day. Using flash cards, and colouring sheets creating activities that hold his attention and give him the chance to know his letters. Then be able to work on his name.

Autism has also featured very heavily in the media this last few weeks, with parents speaking out about how it really is. One mum even allowed them to film her taking her son for a hair cut. Yes life is that hard. Whilst the interviews were cut short the snap shot they did show was very real.

Services are hard to come by in some areas of Australia, Funding is not always reaching everyone. And when you don't have this funding Raising these children is incredibly expensive. With the world standard being that these children need 20+ hours minimum of therapy a week. And simply many families can not afford to do all of this professional therapists.

So many try and make do with 1-2 hours of outside therapy and do the rest at home.
We worked out that Thomas gets 5 hours EI at ECDP a week, 2 days of kindy - not essentially therapy but is social interaction, then he does 1 hour a fortnight with the OT or speech therapist. The rest we do at home.

Next month is Autism awareness month. It should be a great month. I will be hopefully attempting to blog a lot more through out this month.

The school boy

Well this year has been a huge change in day care and education. We changed to main stream day care and started a state education based pre prep program. It has a been an amazing change so far and he seems to be growing up more and more every day.
It also means he is playing with children of a variety of abilities within his own age grouping. He seems to be enjoying being around other children of his own age bracket again and has bonded to yet another little girl. I wonder if she knows he is bonded to her yet?

In fact it took a good month to work out who his "friend" was. He spent the first month mispronouncing her name. Even the day care staff could not work out who he was talking non stop about. It was not until she arrived the same time as Thomas one morning that I clued on to who it was.

The mainstream day care are more flexible too. It does not matter too much if I am running late or a touch early. I am not growled at as his parent needing that extra time occasionally or in an emergency.

The pre prep program at "little people" school has also been great. It is a small group of 4 students with an aide and teacher in the room. They give chill out time and work great on the sensory play. He is getting that intense therapy time so close to home. The other thing is the group is 4 little boys. All different yet all brought together for an intense learning program.

He also seems to really like all of his teachers and aides this year with no real detest for anyone. Touch wood that is amazing and has made for very little separation anxiety and home time meltdowns.

Therapy with his speech therapist and Occupational Therapist have been going well too with the recommended Trampoline being delivered and well used all ready with positive results especially if I can get him on the tramp before any appointments or days at school where he needs to have a little bit of stillness to him. I not sure how long the effect is lasting but I am really trying to get him to bounce for 20-40minuets. And witht he tramp we choose he can do "activities" on the mat that give him focus and movement all at the same time.

The new year woes.

Well after a quiet new years eve we found ourselves on new years day at the after hours Dr's.
It seems the "off" behaviour of Thomas was not due to the moon, or the excitement of Christmas but the fact he had a raging ear infection and we did not know it until his ear drum popped. We felt like fantastic parents that day. Having said that there were no other classic symptoms like fevers to go with it.
This start to the year was not what we anticipated. But it happened. We had two courses of antibiotic until he was over it. Mummy not so lucky. Yes because in classic style what ever Thomas gets mummy gets too, except mummy does not have the immune system to handle even the run of the mill bugs.

We also have had some appointments with the Marter Sleep and respiratory clinic. For one week before our visit we had to wear a special watch. This was not like a time watch but was an activity level watch. Whilst he wore this watch we had to fill in paper work to note his sleep v's activity times of the day.

The results were less than satisfactory but did cement EVERYTHING we had been saying about our little man since he could walk (at 8months!). He NEVER stays still. He is always on the go. But more alarming was his movement level in his sleep. They were way too high. Even on his "good" nights, they were not even at a satisfactory level of stillness.

This lead us to more testing, this included a very large blood test that was the most grueling experience for all involved, including the pathology staff. I tried so hard not to cry during this process. But mummy had a plan to help forget the pain. A Bravery award. A good bravery award, or so mummy thought.

So for a month Thomas has been asking for Hiro the train from the Thomas the Tank Engine series. It is quiet expensive for a single toy but I found patchwork Hiro at an awesome price and grabbed it. Well evidently it was the WRONG one. and didn't I hear about it, actually I am still hearing about it.

Yes the ASD child who must have the correct toy for his set suddenly appeared. I was floored. Devastated in fact. Had I not raised him better to be grateful for any gift? Evidently I have been told this is not an uncommon issue that many ASD parents face. searching for that right train, or lego or Cars car to avoid the fall out after wards.

So now I know, work out exactly what train, Lego, car he has his heart set on (All I knew was he wanted the Hiro train, I had not paid enough attention to the detail of what Hiro train to buy.). Then go hunting it down. In fact I am still hunting the right Hiro train at the right price as i refuse to pay a fortune for these toys.