Managing Autism - A Personal View

This post is by Jack.  It was inspired by Casdok’s Wordless Wednesday yesterday when Jack was fascinated with the muscle man and finding words to match.

Initially Jack just wanted pictures - but then he got talking (non-stop as he does)…

So Jack says:

“I want to put Ninja Turtles on our blog so that people can say something about them.

So please leave a message for Jack to say what you think about the Ninja Turtles.

(And then Jack continues)…

………. Ninja Turtles have swords and masks and strong muscles, and why do they have those things?…..

…..The Turtles names are Raphael (who is red), Leonardo (who is blue), Donatello (who is purple) and Michelangelo (who is orange)…”

Now we have to explain to him why the whole blog can’t just be about Ninja Turtles!!! - Elissa

Jack is 6 today!!!

Being extremely excited (and of course methodical and consistent in life), Jack has been counting down the days (each morning and evening) for the last 3 weeks.

And as normally happens on ’significant’ days, the first meltdown occured very early on in the day when the idea of it being his birthday all just seemed too overwhelming.

Jack loves people to sing ‘Happy Birthday’ to him, but then it becomes too much for him and he head butts and flaps his arms around (and jerks his face and makes loud noises) whilst the song is in progress.  We haven’t worked out if it’s a happy reaction or if the reason he does it is because he is not able to cope well with the attention on him.

We’re trying to keep most of the day fairly quiet for him.  We have an outing planned later on in the afternoon - swimming followed by fish and chips for dinner (Jack’s favourite).  Jack has invited a friend to join us, but we have steered clear of a birthday party as such (we have enough trouble coping with going to other kids’ birthday parties without having to try and deal with our own!!!).

So another year has passed, and our beautiful boy is a little more grown up.

Happy Birthday, Jack!

We all love you lots.

xxxxxx

It is common for people with autism to either struggle with understanding social cues or to be completely oblivious of them altogether.  Social cues usually require interpretation and have the potential to cause a great deal of anxiety for people with autism (where social development is often delayed).  We had a number of experiences today with Jack that reminded us all too clearly of this fact.

We spent some time outside today playing with some of the children in the street who Jack knows quite well, as well as having my brother and his girlfriend call in for a visit.  Jack coped really well with the extra people around (only a few instances of inappropriate language and head butting/physical outbursts), but a number of times we could see the look of total confusion on his face as he struggled to make sense of what was going on around him.

With Jack being relatively relaxed in his environment we were able to stand back and observe him from a distance, and we could see where he literally stopped what he was doing purely out of confusion as to the social happenings around him.  At times remarks and gestures were made and Jack’s face would go blank as he looked from one person to another.  Sometimes we could see the realisation of what had happened come over his face a couple of minutes later, and sometimes he missed the meaning altogether (then taking some time to get back ‘up to speed’ before rejoining the activity or conversation).

Although there were moments that were difficult for Jack, it was a great opportunity for us to be able to pull him aside and explain some of the things that were happening and what different things meant.  (We don’t often get to do this as we are usually caught up with ‘behavioual stuff’ with him.)  In fact, we could almost see him relax once he had an explanation and was able to understand what was going on around him.

We have now set ourselves the task of spending more time with him on this particular area of development - looks like more role playing and social stories are on the way…

Routines are imperative for people with autism - and Jack is no different.

We have routines in our house for most things, and sleeptime is no exception.  This is where routine really is vital - with no room at all (in Jack’s eyes) for error.

When Jack first gets into bed, the sheets are straightened, with the foldover measured perfectly against his chin.  The sheet must cover his bed to exact standards, with no creases, and definitely no gaps at the sides.  Honeybear (who has been with Jack since birth) takes pride of place with his head on the pillow next to Jack’s.

Songtime comes next.  A tune about Jack being loved and ‘the best boy in the world’ (based on the traditional “3 Little Dicky Birds” that Jack came to depend on as a baby), is sung by Mum, verse by verse (5 in total) whilst his hair is being rubbed firmly.  (Sometimes the hair rubbing is replaced with feet holding or pillow pressure on his body, depending on his mood for the day.  And if Mum is away for the night, Dad needs to call Mum so that she can sing the song over the phone.)

After the song, 3 kisses on the cheek follow with another rub on the forehead and “I love you” said back and forth about a 1/2 dozen times.  The light is always left on and a drink of water must be left next to the bed for ‘just in case’.

The whole routine takes about 5 to 10 minutes to complete - and yes, if for some reason Jack has to get out of bed, the routine starts from scratch!

Then, if he wakes during the night… well, that’s a whole different routine again…

What a morning we have had -and what a success to celebrate!

Jack loves lions, but will extend to other animals and dinosaurs when he’s playing with his Lego.  Our usual Lego play consists of Steve or I constructing animal figures out of Lego, Jack lining them up, and then no-one can touch them for a couple of days until Jack decides to pull them apart, and the process starts all over again.  Sometimes Jack builds the cave for the animals to live in - a very methodical and consistent procedure, that requires a lot of support and back up from us.

But this morning was a different story altogether.  I had left Jack with his tub of Lego in front of his favourite movie whilst I went about doing some cleaning and washing.  The phone had rung a couple of times and I had also been helping Anna with her dolls, so I hadn’t had a chance to check on Jack, other than a quick exchange of words every now and again, and to notice he was sitting very quietly and contently.  Little did I realise he had been busy constructing - and what amazing construction he had done!

Working all on his own, Jack had constructed a ‘T-Rex’, bottles of ‘milk’, a person and a dog, a policeman that (according to Jack) looks for lost animals’, a bunny and a cat.  He had worked diligently all morning, using the Lego picture guide as a reference, and his memory of what Steve and I had done with him in the past.  I was totally amazed, and delighted at the same time.

Jack is known for sitting back and watching - we experience this daily with him, and his Kindergarten teachers have often reported that Jack prefers to watch group activities from afar rather than participate, unless he understands the process and then he might participate on his terms.  Clearly our weeks and months of Lego play (where Steve and I have often been totally frustrated with Jack’s lack of want to physically participate and his preference for simply instructing us on what to do) have paid off.  Jack has reached that point where he can now process what to do with the Lego himself.

What a breakthrough!  And what a Lego milestone to reach!

This post is a simplified version of our daily discussion on socks - according to Jack (and interpreted and written by Mum).

The problem with socks is that they itch, and scratch my heels and tickle my toes.

The problem with socks is that they stick, like glue to my feet, they just don’t let go!

The problem with socks is that they twist and turn and pull all over my feet,

The problem with socks is that they burn, my skin how it hurts, it’s so hot with the heat!

So why wear socks?

Well… I don’t, and the problem is fixed.

Lion Boy - yes, this is how we often affectionately refer to Jack.  You see, lions are his ‘thing’, his interest, or focus you could say.  A common thread with people having ASD is that they have an interest that is quite obsessive.  With Jack, tigers get a look in too, but the lion is the king of his world.

In our house we enjoy daily viewings of the movie The Lion King.  In fact, if we miss a day (when we refuse to allow it on the television one more time!) Jack simply replays a live version for us.  And we always know where to find Jack when he is playing outside - there are dirt hills in the vacant block next door to us, and without a doubt Mufasa (Jack) will be trying to scramble to the top yelling ‘Scar, help me’!

Jack’s kindergarten recently had to invest in new animal figurines - particularly lions and tigers.  We didn’t ask why, we had a fairly good idea that Jack had probably worn the old one’s out.

Whilst Jack’s ‘thing’ can be extremely frustrating (like when he roars his way around the shopping centre, and leaps his way around the house, wanting his food in a bowl on the floor like our cat), it could be worse.  We have heard stories of autistic children being obsessed with bringing home strangers, or being obsessed with ‘escaping’.  At least the jungle is fairly containable - for now anyway!