Stephen Wiltshire

We were fortunate enough in our city of Brisbane to have Stephen Wiltshire come and do a fly over and drawing of our fair city.  I took my daughter in so we could go and have a look at him as he was doing it.  He was quite amazing.

I was very interested in the way he was holding his pencil while we watched him.  It is an unusual grip, but it is very similar to the way my son holds his pencil.  It's made me think about it a lot over the last few days.  We have put a lot of effort into changing our sons pencil grip so that it is more 'normal'.  It has all been by encouragement and exercises, not force.  But I've begun to wonder if this attitude of "everyone must hold a pencil just so" will become how we view forcing people to use only their right hand in times past.  Are we, by making our son conform to the norm, making it to unnatural for him to write, and is this why he has so much trouble at it?  Would we have been better off just letting him grip it in a way that felt natural for him?  I don't know what the right answer to this is, and I don't think we could reverse the changes, but it's an interesting point to ponder.

I loved Stephens work, and plan on purchasing a print of this drawing when it becomes available. I was amazed at how well he was able to concentrate and work with so many people watching.  He would pause every few minutes and look around.  At first I thought he was looking at the crowd.  Then I wondered if he was seeing the city in his head, and visualising what it looked like before putting it on paper.  His attention to detail was quite amazing.  I have absolutely no idea how he does it!

I felt very privileged to view him working.

Peer Support!

Over the years of Michael's schooling - he is currently in year 6 -  he has had some fantastic teachers who have helped to develop an attitude of care and acceptance within Michael's peer group.  I'm going to do a few posts about these kids, to highlight how important they have been to him in his life.

In grade one, one of the first ways his teacher discovered to get him to do something, was to get one of the girls to ask him!  He has always been popular among the females, and usually attracts all the little would be mothers!  They will tie his shoes, carry his books, show him where to go, and generally do things so he doesn't have to think for himself!  Sometimes I wonder if he would have grown up a bit tougher if he hadn't had such accommodating peers, but it has made his primary school years so enjoyable for him, and he is so happy at school, and within himself, that I think the advantages out weigh the disadvantages no end.  I believe that giving a child a strong, solid and secure background, where they know they are loved and accepted is the best starting point they could possibly have.

There has been a core group of about 6 students from that first class who have stayed with him right through to now, and will be with him next year as well.  I know I am going to cry my eyes out the day he finishes primary to start high school, as all his friends seem to be going to different high schools, so it would have been impossible for him to stay with them.  In the end, we have chosen a school that has a superb reputation for supporting special needs children quite close to us, with very low student numbers.  It will be hard for him to adjust at first, but I believe it is the right choice for him and have had a lot of positive reinforcement for our choice.

Michael's Grade One Birthday

Michael's birthday that first year of grade one turned out to be one of the funniest things ever.

About six weeks beforehand we asked him if he wanted a party with any of his friends, or just cup cakes at school and family at home.  He was adamant that he did NOT want a party!  This was fine, less work for me, and everything was rosy.

The week of his birthday came, and suddenly he turns to me and says,"I've changed my mind, I want a party now" !!!  I asked him if he was sure, and he seemed to be, so I now had about three days to organise it.  "Who do you want to invite", asked I, he promptly named 6 friends.  "Any others" says I, "No", says he. "I am turning 6, therefore I need to invite 6 friends" !!!  Who am I to argue with such intrepid logic.

So one busy night creating invitations, which we handed out the next day.  Thankfully I new all the mums, so gave the invitations directly to them, with apologies for the short notice.  This next bit shows how even then the relationship with his class mates has just been wonderful.  Everyone invited was able to come, and none of those not invited seemed to mind.  They all accepted Michael just the way he was.

The day of the party arrived, and after frantically cleaning the house (quite normal for my house), we were ready!   The party was only going to be for an hour, I think 1pm to 2pm, so hopefully short and sweet.  My own philosophy for giving party's has always been to tire them out, feed them lots of sugar, and send them home before the house is destroyed.  This was no different.

I think we had a pass the parcel game, pin the tail on the dinosaur, and a few other party games.  All the kids had a fantastic time.  Played nicely, brought lovely gifts, and where very well behaved.  All that is, except Michael!  As soon as the first guest arrived, he was happy to accept their presents (most were lego), but then went straight to his room, where he kept to himself almost the entire hour.  I think we did manage to coax him out to cut the cake, and get a very reluctant picture, but apart from that, nothing!  His class mates, and their parents, all seemed to understand however, so a good time was had by all, and it was a successful party.  These parties improved over the years, but he has always been more excited by organising them, then actually participating in them!

Premature Birth Day

Today's blog is for my friend Kylie at Not Even a Bag of Sugar


I have to admit I haven't had a lot to do with premature babies, or even small babies.  Both of my own children were overdue, and at 8lb 14oz, and 10lb 8oz, definitely not considered small!


After reading the account from Not Even a Bag of Sugar   of her experience, as well as some of her friends blogs, including Mummypinkwellies  and  24weekers  I was extremely moved.  I don't know how I would have coped with a sick baby, who you couldn't hold or take home, or otherwise care for for weeks and months.  To go so long dealing with such uncertainty must be heartbreaking, and I have nothing but admiration for any family who must go through it.  


I would like this post to be a salute to all Mums, Dads, and Bubs who have been affected by prematurity, and to vow to hold them in my prayers, and support them when given the opportunity.


God Bless everyone of you.

Grade One Continued

During those first few weeks of one we had quite a few things of concern.

When we were having to observe him in the playground, we found it very hard to differentiate him from the other children, as they were all dressed the same!  Our solution was to put him in brightly coloured shoes (not school uniform of course), but it was the only way to spot amongst the crowd!

An incident that didn't help during that first week of grade one, and saw us sign our first behavioural management plan, was a fire alarm.  This was not a drill, it was a real alarm, from a possible risk.  The children HAD to come out of the buildings!  I often picture this as a similar scene from the Arnold Schwarzenegger movie Kindergarton Cop, where during the first drill, he ends up dragging kids out by their shirts with total pandemonium.  The thing is, it was new to all the grade ones, and it was real, not a drill, so NO ONE was prepared.  I think, from memory, they had to call the deputy principal at the time to come and carry him to the safety area.  But he didn't go without a fight!  I think it was very frightening for all involved.  After this incident, we signed permission for Michael to be carried on occassions when his or others personal safety was involved, and his first plan of action was put in place regarding future fire alarms.  There were drills quite regularly that first year just for the practise!

With the introduction of the aide in about week two, things started to improve.  Michael began to settle in school, and was always happy when I picked him up.  He still screamed and protested on the way in, but it was getting less time to that all important 'he's okay' phonecall.  He actually started learning his letters and numbers.  His teacher was one of those amazing people who was able to adjust the whole classes education system to suit my sons need, without any of the class loosing out.  She started an attitude of acceptance between Michael and his classmates that has continued to this day.  It is one of the things that I will always be grateful for from the school.

Michaels learning was slow, but he was beginning to read and talk more, and was accepted into the class and the whole school by all involved.

Starting Grade One

Grade one is a scary time for any child.  The first time of structured learning, sitting at desks, and having to get work done.  For Michael, it was very interesting indeed.  The first day wasn't too bad. It was all new and he didn't know what to expect.  I presume like most grade oners, he thought it would be just like preschool!  It wasn't.  There is a lot more work involved in grade one.

And this was on top of all his other needs and requirements.  We had managed to get him toilet trained, although there were still a LOT of accidents.  He had a lot of sensory issues, many of which we still hadn't worked out yet, which was lots of fun.  The school, although fantastic in what they did for us, had not had a lot of experience with ASD, so they were learning as well.  All this made for an interesting first week.

My husband had the first week off work to help, and we so needed it!  Because the funding for aid time hadn't come through yet, we were needed to go to school at every break to help him practically.  That is, go to the toilet, get his lunch out and organised, and then supervise him in the playground.  That's four trips to the school in one day.  Morning, first break, second break and pick up.  We did this for I think two weeks, and then the funding came through for an aide, so he had a full time aide in school with him all the time for the next four weeks.  This first aide was such a blessing, and played a big part in getting him settled into school.

Mornings became a nightmare.  We would have to force his clothes on him, then carry him and place him in the car.  Once at school I would send my older child off, and then drag him out of the car, usually screaming, and carry him into the school and put him down.  Once there, his teacher or aide would take hold of him, I would give them his bag, and then I would leave.  That was the only way it seemed we could do it.  His grade one teacher was fantastic.  Everyday she would call me once he settled down, so that I could relax.  I didn't do much until I got that phone call.  In fact, I didn't do much at all during those first few weeks of school.

The Cave

This is an analogy of how my journey felt to me.

When our son was born, we started a journey.  We were on a long clear road, with other people, but no major hurdles in the way.  It wasn't going to be all roses, and we were sure there would be bumps, but the end was quite visible, we knew where we were headed.

Then we fell down a hole, and that hole was covered over.  We now were completely blind.  Didn't know where we were, what had happened, or which way to go.  First of all, we stood up to try and walk or get out.  It didn't work.  We fell back down, there was no way we could even stand in this place.  We are in a cave with no light and no sound.

So, we started to crawl.  Had no idea which way we were heading, but we had to move somehow, otherwise we would die!  So we crawled.  We may have gone in circles, we may have gone in a straight line.  Who knows!  We sure didn't.  But eventually, we hit a wall.  It must have been a wall, because we couldn't get through, under or over it.  But, we could use it to stand up.  So, we have now got to the wall, and we're standing up!

We can now slowly move along this wall, keeping our hands pressed surely to it.  Eventually, we find an opening.  We keep our hands pressed to the wall, but start down this new opening.  What is it? Where does it go?  Is it the right way for us?  Unfortunately, this path was a dead end.  There is no hope this way.  We go back, keeping our hands pressed to the wall.  We keep going around this wall, and eventually come to another opening.  Is this the right path? We go down a little way.  It doesn't end.  Its looking promising.  We are still in the dark, but this path feels better.

We keep walking, still pressing our hands against the wall.  Suddenly, something appears in the distance.  After so long in the dark, we have no idea what it is.  We keep looking at it, and walking towards it.  We realise after a while, that it's light!  It's an awfully long way away, and it doesn't illuminate our surroundings, but we can see it.

So this must be the way to go.  This must be the path towards the opening.  Maybe, one day, after a lot of slow walking, we might actually get to that light.  We can't see what's in the path.  We are sure that there are many rocks, boulders, and loose gravel.  We are sure we will stub our toe, slip over, and feel like giving up before we reach the end.  But we are going to keep going.

One day, I hope, we will be back on that open road.  It probably won't look the same to us anymore.  We will be more aware of pitfalls, traps, and will probably look more at our feet than the end goal.  But one step at a time, we are walking our way towards the end.  We won't win any prizes for being first.  But we will definitely be stronger, fitter, and more sure of what we can handle.

We have been in the dark, and in fact, are still there, but we are moving forward to a future with possibilities.

SEDU

There were many ups and downs in that preschool year.  In hindsight, if I could do it over again I would have pulled my son out of the school preschool, and just left him in the SEDU.  He was happier in the smaller group, and we constantly clashed with his preschool teacher, who just didn't get him.  She was a bit better once we had that diagnosis, but she almost seemed to just ignore him, and left him to the aide.  She didn't seem to think of his needs, or do any adaptions within the class for him.

I remember, at the and of the year that it became quite obvious.  They had scheduled afternoons where they would go to the grade one class rooms to get them ready for 'big school', but these all happened on the Wednesday, the day he didn't go.  I would take him up just for the afternoon so he could join the experience, but I mean, really, it wasn't going to work, trying to introduce this new experience by making the whole thing be out of routine.  She also scheduled the class Christmas party and breakup to be on a Wednesday as well.  So again, for him to be a part of it, we had to go up to school on a different day, and disrupt his routine.  And she didn't even seem to realise that either of these things would be a problem.

On the other hand, Michael absolutely loved his SEDU class.  He was happy to carry his bag in, knew where it had to go, and was able to participate in everything.  It was the very beginning of targeting his social skills learning, and they put into motion a lot of ideas that were used in future years.  He 'graduated' from the SEDU that year, and deemed him ready for grade one.

We enrolled him at the same school as his preschool, as his older sister was already there.  We were assured that they would be able to accommodate him, and he would receive adequate aide time to help him adjust to the new environment.  It was quite a big decision to stay at this school, as at the time they did not have a special needs department,  and there were only about 3 or 4 students with needs.  But it turned out to be a very wise decision for our son during the next few years, and we didn't regret it.

Its official

I know that for a lot of people, the time of receiving the diagnosis can trigger a lot of grief and feelings of loss and hopelessness.  But for myself, I think that because I knew in my heart that this was the issue, I went through that grieving time about a year earlier.  When Michael received his diagnosis, my main feeling was one of complete relief.

FINALLY, I had an answer, and an official answer.  I wasn't making it up, worrying about nothing, making mountains out of molehills, or wasting peoples time.  There was something wrong, and now it felt like we could start to help him.

It was amazing how quickly things happened at this time.  Within a week, Michael had been accepted into a Special Education Development Unit (SEDU), 2 days a week, which was a place for pre school aged children who needed early intervention.  At this unit he was in a class of 6 with one teacher and one aide.  He had such a good time there, and developed so much.  He received speech therapy, occupational therapy, and some physio therapy at this place, and it dramatically helped him become prepared for grade 1.  He was going to this school Monday and Tuesday, staying home Wednesday, and then going to the Preschool at the other school on Thursday and Friday.  It was a lot for a little one of 4, almost 5 to do, so we cut all other activities at this time, as he would just get so tired.

We were also now able to get more help for him at his preschool, and he suddenly, instead of being a "naughty neurotypical child", suddenly became a "quite well behaved child with Autism".  It made such a difference to everyone's reaction to him.  It was the start of a beautiful relationship between him and his peers, and just made a lot of things clearer.

There were definitely many challenges ahead, but we had made a start, and were moving forward.