Managing Autism - A Personal View

“Stick by rules and we can’t go wrong”….. famous last words…..

Last week was the Kindergarten Christmas Party - the much anticipated event of the year at the Preschool, and of course, Jack was excitedly anticipating it as much as any other child at the Preschool.

As many of you would remember from a recent post, we had made the decision this year to ‘re-structure’ our holiday social gatherings around the needs of an ‘autism spectrum disorder’ - translating to; be a little more ‘low key’ with our celebrations, and better plan and structure our outings.  However, with the Kindergarten Party being so high up on the ’social’ calendar for Jack, we relented on the ‘low key’ thing, and made the decision to face it head on.

So the afternoon of the Kindergarten Christmas Party arrives, and we sit down to review our plan for the occasion:

• We have been informed that Jack’s dietary needs (which are similar to some other children at the preschool) will be catered for, so we cross that off our list.
• We are very familiar with the layout of the Kindergarten yard (where the party will be held) so potential exit points are under control - cross this off the list.
• We have a schedule well organised - what time the party guests will arrive, what time food will be served, what time Santa will arrive, and what time we can leave - cross this off the list.
• We are familiar with many of the children at Kindergarten, so the guest list seems fairly manageable (as far as being a ’safe’ crowd) - cross this off the list.
• We have the yard marked out for supervision points - where we will position ourselves in order to have full view of every part of the yard so that if Jack is running (faster than we can keep up) we will still be able to fully supervise him and be by his side in a split second if needed, so we cross this off the list.
• Drinks and chairs are packed up next to Annie’s stroller (the preschool is within walking distance so we decide this will be a better option - takes out the extra issues that come with getting in and out of the car) and we are quietly confident all will go well.

Watching the clock closely, we plan our departure from home precisely to allow for the 5 minutes walking time to Kindergarten (allowing to arrive 15 minutes before the Party kicks off so that we can be settled in place before too many people arrive).

Sparing all the gory details of the Party, 1 1/2 hours later we arrived home, completely worn out and exhausted.  Have we learned our lesson?… hopefully yes (although how often do we forget again over time???).

According to Jack he had had a wonderful time at the party, but with the sensory overload of it all he had become totally hyper, had run nonstop to the point of causing himself nose-bleeds, and we had struggled to get any verbal instuctions though or have him make any form of eye contact.

We saw Santa briefly………. and did we eat?… well if you consider a sausage in bread (an Australian tradition to those of you wondering) on the run….. that was about it before we finally made our ‘well executed’ (considering the mayhem around us) exit, dragging 2 exhausted children home.

Now what was that about “low key”?….. famous last words!!!

Steve

I read a fabulous article yesterday, titled “Courageous kids on film“.  It caught my attention because the first line of the article made a statement about it taking ’courage’ to face the world with Aspergers Syndrome.

The article then went on to outline the launch of a short film highlighting and celebrating the stories of children with the condition.  The film came as a result of a number of workshops that were held to investigate some of the challenges that Aspergers kids face.

I was delighted to think that such a film had been produced.  I have posted before about the need to highlight and celebrate the wonderful things about our kids with autism spectrum disorders, and this film is definitely a wonderful contribution to raising positive awareness in our society.

On that note, I’d like to share a story of Jack’s courage recently - not a big ground breaking moment for most kids, but for Jack, it was huge…

Jack had his final orientation day at school last week, in preparation for next year.  The first 2 orientation days had been really successful; they had been for around 2 hours a visit, and although there were a few challenging moments, Jack had coped really well with everything going on around him.

The evening before his final orientation day Steve and I had been to a meeting at the school for a final rundown on some of the details for next year.  During this meeting we discovered that although we had requested Jack be placed in a class with his Kinder friend, they had been placed in separate classes (a little boy who he had been very attached to during the ‘getting ready for school’ process, and whose presence we felt would help Jack make a smooth transition to school).  So the trip home for Steve and I was filled with anxiety as we contemplated how we would break the news.

Jack was devastated with news, as we had anticipated.  After the tantrum, and the ’hurt’ and ’sad’ tears, we had ‘angry’ tears, with the question asked continually ”why would they do this to me?”.  I struggled to fight the tears myself and for a while he just let me cuddle him to me like a baby.  He was scared, and I was feeling scared for him.  Steve (thank goodness he is very practical) managed to bring the focus back to the more positive things about the day to come, and finally we got him to sleep.

The next morning went quite quickly, getting ready for school.  We were finally ready to go when I discovered Jack had gone missing.  Annie and I searched the house, only to find him hiding under a table - the news had hit him again, and he didn’t want to go.  So we spent a while talking, and I convinced him that even though he wouldn’t be in the same room as his friend, it might be worth still giving school a go.  Ten minutes later and we were in the car, and off to school.

This is where Jack’s moment of courage comes in.  We arrived at the school, me feeling sick to the stomach with anxiety, and Jack quite subdued.  We got out of the car, and Jack turned to me and said, “It doesn’t matter Mum, it’ll be okay, I can play with …. at our break time”.  My eyes filled with tears under my sunglasses as he let me hug him.  At that moment I was very proud.  As I said above, not a ground breaking moment for most kids, but a huge moment of courage for Jack.

Elissa

PS - We would love to hear about other fabulous moments of ASD courage…..

Oh, and yes, Jack’s day went well - and he did seek out his friend at break time.

Reading Jen P’s post today, over at Find Out What Jen Finds, I was again reminded of the lack of awareness some people have with their attitudes towards the behaviours and symptoms of autistic children and the relationship of these behaviours and symptoms to the style of ‘parenting’ they receive.  Jen P makes mention of the ’suggestions’ she received on an occasion in regard to her son and her respective ‘parenting’, something that I’m sure most (if not all) parents with autistic children receive at some point in time - often from people who have little understanding of autism, and no thought for the hurt that they cause the parents.

I’ve spent the day pondering the whole ‘parenting and autism’ thing.  Parenting style (or for that matter what some people consider ’lack of’ parenting) is simply not the cause of autism, and will in no way ‘bring on’ an autism spectrum disorder.  Sadly though, an autism spectrum disorder (and the behaviours and challenges that an ASD brings with it) may cause many parents to question their ability to effectively parent (and unfortunately the parents’ questioning of their own attributes can be escalated by the attitudes of those around them).  Even after a diagnosis, and when people are aware of a child’s autism spectrum disorder, many family members and friends will still link the child’s behaviours back to the parenting.

Speaking from personal experience, an autism spectrum disorder can place a great deal of strain on social relationships.  An autistic child’s behaviour will often have to be continually explained to others, and a parent’s social interactions may be continually interupted and challenged.  But for many parents, social contact may drop off not only because it all becomes too hard to manage the child’s needs in a social environment, but also because of the scrutiny that they come under in regard to their parenting skills.  Parents often find themselves subject to criticism (whether it is intended as ‘well meaning’ or not) and sadly, a lack of understanding in regard to what they do and how they ‘manage’.

So I write this post as a plea to fellow parents of ‘autism’ - believe in yourself and your abilities, and remind yourself every day of the wonderful job you do.  Hopefully over time not only will there be a greater recognition of autism in itself, but of the way in which we parent - with total dedication, and all the love in the world for our kids.

One thing is for sure, as a parent of an autistic child, not only do you have to master the typical parenting skills, but you also master the specialised skills.  Of course we will always have days where we feel like we have ‘no skills at all’ (I know I do regularly!!!), but without a doubt, we are parenting the very best way we can!

Elissa

We posted a couple of weeks ago about the fact that we had had a meeting with our local organisation that facilitates respite care for families in our area.  We were hopeful that a carer would be organised for Jack, giving us a couple of hours break a week.  We were looking forward to being able to have some one on one time with Anna, and a break from the intensity of life that comes with parenting a child with an autism spectrum disorder.

Well, we ’struck gold’ with a fabulous carer who will have Jack for 2 hours a week.  The organisation had suggested a male carer for Jack (to give him another strong male role model - obviously he has Steve, but all the other adults in his normal day to day life are female), and so we met the suggested carer for the first time last week, when he visited us at home.

Jack took to the carer really well (it helped that the carer had children at home with a Playstation, so he was able to ‘talk Playstation talk’ with Jack), and Jack was more than happy when we suggested that the carer might take him out for an afternoon play.

As we approached the afternoon outing this week, we were a little nervous as to how it would all go - Jack agreeing during a ‘play session at home’ to have an outing with the carer was very different to actually ‘going’ with carer when he arrived to collect him.  But thankfully all went well.  We breathed a sigh of relief at the successful pickup, and an even greater sigh of relief when he arrived home happy and quite relaxed.

Jack now has a 2 hour weekly session scheduled with the carer, and within the next couple of months we will be looking at joining him into a program for school aged children - the group meets for 1 hour a week to take part in activities where they work on their social skills. 

It will be a matter of choosing the right time for him to join this group as they only take new children when the group is ready to cope with an additional person (and they have to ensure they don’t have personality clashes within the group).

So for the meantime, we’re all looking forward to our 2 hours a week - Jack’s excited about his outings (even if it’s only to play Playstation elsewhere) and we’re excited about having some down time.  We should all be feeling more relaxed as a result!

Please also take a look at Jack’s Post below!!!

How can it be?

Why?

What does this mean?

How do I know?

But… what do I do now??

As we move closer towards the end of the year, we find that we often spend time reflecting on the events of the year just gone.  2007 has been a huge year for us as a family - one that has seen us tackle many new challenges, and grow incredibly in strength and personal ‘understanding’.

We were talking last night, reflecting on the diagnosis of Autism Spectrum Disorder - a big part of our learning curve this year.  And one thing that we debated was - “What was the biggest question?”, or as Steve put it “What was the ‘burning’ question?”  We spent a long time thinking over all that we had struggled to come to terms with throughout our journey to ASD diagnosis and decided that our most ‘burning’ question was - “What do we do now?”

It’s funny, when you deal with specialists ‘diagnosing’ your child you’re provided with plenty of ‘this is what autism is’ information, but then once you’ve kind of worked out how the symptoms fit with your child, it often feels like the really hard stuff is let to sit - or referred on to someone else!

It has taken us a long time to start to find the answers to “What do we do now?”

And even now, when faced with a list of ‘what we should do now’, it becomes “What do we do first?”

So what was your ‘burning’ question that came with (or without) the diagnosis?  We’d love to know…

According to wikipedia, personal space refers to the space immediately around a person, that they consider their own. 

Two people not affecting each other’s personal space.

Reaction of two people whose personal space are in conflict. (Wikipedia)

It can be difficult to work out Your Own Personal Space - and this can be especially so if you have autistic tendencies and struggle to understand social cues.

Personal Space has been an ongoing battle for us for quite some time - being quite affectionate, Jack struggles to understand the concept of personal space.

Our 2 kids have grown up in an environment where affection is openly displayed - in both our immediate and extended family they are constantly exposed to hugging and friendly pats on the shoulder/back etc.  We consider ourselves blessed that Jack is open to being hugged (although on his terms!) however as he prepares to step into the world of school and broader social contact, the issue of understanding personal space has arisen.

Jack has a habit of grabbing people and hugging them… anyone from the neighbours, to acquaintances, to other children in his Kindergarten class.  As a young child this brought comments of “how cute!” or “what a darling!”, but as he is getting older it is becoming “strange” or “rude”.

We use the idea of an ‘arms length’ distance from people, when trying to explain to Jack about what is an appropriate space to be from someone.  We also talk about the fact that we need to ask someone’s permission before we touch them or ‘go into their space’ but still the concept evades him.

Our social stories have been quite basic in this area to this point so we are about to ’step them up a notch’ and include some role playing (perhaps even video recording the role plays so that he can watch them in action over and over again).

So if anyone has any thoughts or advice on strategies that they have used in this area, or any ideas on things that might work we would love to hear - that is, of course, only if this request doesn’t invade your personal space!!!

Happy birthday Annie! 

The concept of “little sister having a birthday” doesn’t fit well with Jack this year.  The usual autism spectrum traits have come out in full force, and with the birthday celebrations we have had considerable ‘mayhem’!!!

Tomorrow we should be back to normal though… in the meantime, we’re all going to take some time out and do some more trampolining.  The trampoline is new to our house, and has been fabulous.  Long live the trampoline!

How can you say no to that….?

Well, that’s what I thought anyway - This will be easy, a quick trip to the pool to wear them out and then enjoy a peaceful afternoon at home.

I told Elissa that we were off to the pool, and she gave me that “are you completely insane?” look, but then proceeded to pack the kids bags in record time and wave ever so sweetly as we drove down the street. Looking back this should have been my first clue……….

We arrive at the Pool, and get a park right out the front (first win to me!). The kids unload themselves, and charge into the building determined to beat each other into the water. I run after them, stopping only to pick up the 3 toddlers, 2 grandmothers, and 1 mother that had rather selfishly got in between my kids and the water!

After apologising to all involved, I make my way over to the attendant to pay the entry fee. I explained that my kids were already on the way to the pool and I needed to pay for them. I pointed them out, just in time for the attendant to witness the 2 of them doing “blowfish’s” on the beautiful clean windows for all to see! He then gave me another one of those “are you completely insane?” looks and passed on my receipt. In hindsight, this should have been clue number 2…….

The pool was very quiet (second win to me!), and apart from a couple of other families we were pretty much alone…….. or so I thought. Within about 15 minutes of us hitting the water, it turned into peak hour in the pool - we had water aerobics classes, swimming lessons, swimming training, birthday parties and to top it off a very large inflatable jumping castle placed in the deep end of the pool. What had been my ideal trip to the pool, had very quickly turned into my worst night mare (the kids thought it was great!).

Before I could plan our speedy exit, I think my kids sensed my fear and developed a very clever tactic - take off as fast as we can, in completely opposite directions (one may get caught, but at least the other gets a start on dear old dad!). I have to make a split second decision - do I just leave and pretend that they’re not my kids (not really, but sometimes it would be nice!) or which one do I chase first?

I capture Anna first, and make sure that she is safely away from the water, and begin the chase down of Jack. He is not hard to spot…. not only at this stage is he the only one running at full speed along the pool, but he has also decided the swimming shorts are not aerodynamic for a fast get away and has dispensed of them into the pool!

At this stage, I can also see the target of his getaway……. The Giant Inflatable Jumping Castle. With Anna under one arm, I start to gain ground on him. I try and ignore all the stares from the other adults (and laughter) - I get within 5 metres of him as he takes his first step onto the jumping castle, I just missed him. I must admit, the site was very amusing….. 1 naked boy did manage to clear the entire jumping castle, and proceeded to have a great time jumping about all by himself!

Eventually, I managed to get a hold of him and marched my 2 children out of the pool - after such a experience, I was just looking forward to getting back to the car. Just as we were reaching the door to leave (after a nice young girl had fished out the offending shorts), we passed a couple of elderly sunbathers out on the grass - My little girl turns to me, and says at the top of her voice “Dad, why doesn’t their skin fit?” (she was referring to their wrinkles).

I did not look back, but from the laughter I know that the whole pool probably heard the question… I could not get in the car quick enough, and arrived home to a very relaxed wife “Did you have a good time?” - I then explained the events to her. That was about 3 hours ago, and I think she is still laughing as I write this.

Luckily, I love my kids unconditionally and even as I write this I can’t wait for our next little adventure!  

     Steve

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Christmas and the holiday season is fast approaching, and with it comes parties, get togethers, and then even more parties!  Although Jack loves the idea of being very social, when it comes to being in an environment with lots of other people, and noise and excitement, he just doesn’t cope well (in fact, one on one social time is probably the best for him - assuming he’s in the right frame of mind!).  So with Christmas ‘on the horizon’, we are busy preparing ourselves with some strategies and tactics to get us through the crazy social time.

This year we have made the decision to re-structure our holiday social gatherings.  In the past (before the diagnosis) we struggled through parties and social occasions, fighting an uphill battle.  Only now do we realise that in the past we were simply setting Jack up for failure.  We were pushing him beyond his boundaries, and expecting too much of him (in terms of coping with the social frenzy).  This year will be a little more low key, with better planning and more structure to our outings and visits.  Fingers crossed all goes well!

“We’re living with autism, and we LOVE autism!”

We’re starting to put together some photos of us all - photos that depict what we love most about Autism.

Most of all it’s smiles!!!

(You can see more down our side bar.)

We’ve been spending alot of time over many months wandering around blogs and forums, and it’s wonderful to see the positive exposure that autism is receiving.

Of course, there is alot of negative stuff (you’ll always find that), but overall we are delighted to find that there are so many people like us who are just trying to share their story and help the world see that autism isn’t a scary thing - in fact to us it is just normal.

We live with autism, and we love with autism - how could it be any other way!?!

PS - Don’t forget to check out our series of videos  - and if you have some favourites of your own you would like to share please just leave us the link!