About trying to raise a boy with Autism and ADHD whilst keeping a sense of humour.

Sunday, March 25, 2012

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.

Sunday, March 4, 2012

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.