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.

Jack’s favourite place (other than in front of the Playstation) would have to be in the garden.  As do many children with an Autism Spectrum Disorder, Jack has sensory likes and dislikes, and it has been important to us to provide spaces where he (and Annie) would feel really comfortable.  Over a number of years we have worked on creating a ’sensory playground’ for the kids.  And we have also created spaces that would provide opportunites to develop motor skills, as well as let off energy and be heaps of fun!

So we thought we’d share with you a little of ‘Jack’s Place’…..

This is Jack’s ‘running track’, his place to throw and kick balls, and his place to just ‘be him’.  Jack likes having wide open space around him (which is quite ironic considering one of the issues we are dealing with at the moment is recognising other people’s need for personal space).  This is the area where Jack can move freely - he most often runs here (we do laps every afternoon) but rolling around on the ground is also a favourite activity.  Jack loves the feel of grass under his feet, so this is the perfect place for lots of games.

This is a place where Jack goes to hide from the world.  If things get too much for him, or he wants a quiet place to sit, this is often where we will find him (sometimes curled up with the cat).

The play equipment in the ‘kids space’ has been wonderful for Jack.  It has helped him learn and experience climbing, balance and motion (there is also the trampoline and swing set that get a constant workout).

And we are very lucky for Gran and Pa’s contributions to the playground area!

These butterflies have a special place in the ‘kids garden’.  Both kids love to sit and watch the wings flap in the breeze - and if the wind isn’t blowing, they pick them up and flutter them around themselves.  This can be a really calming activity.

This is Jack’s strawberry bush.  Over time Jack has shown a real interest in the practical side of gardening.  He loves digging his hands in the dirt, and looking for worms and bugs in the soil (we’ve found this can keep him entertained for hours!!!).  So the strawberry bush is his contribution to the garden, and he waters it and looks after it all by himself.

This photo shows some of Jack’s favourite textures in the garden.  As we’ve already mentioned, Jack loves the feeling of grass under his feet, but he also loves the texture of the tiny little pebbles on the paths, and the bark chips which lie under the play equipment.

This last photo shows one of Jack’s favourite places to sit and ponder life.  He sits himself on the rocks and plays with his plastic frogs in the bird bath.  He really loves the water play, and again this activity can keep him entertained for a long time.  He tips and pours and squirts the water - it’s a very relaxing place for him to be.

So that’s it for the tour of Jack’s favourite place!  We’d love to hear of others’ favourite sensory spaces to be…

I have been blessed with what I would have to say is one of the most loveliest awards, The Colours Of Friendship Award, from Childlife at In The Life Of A Child. Childlife is a wonderful blogging friend - always managing to either make me laugh or cry with her beautifully written posts. Every day I look forward to visiting her blog to see what delightful story she has to share.

When deciding who to pass this award on to I didn’t have to think very hard.  I have so many lovely blogging friends who I love to visit, and who visit our blog regularly.  All these friends deserve this award, so to everyone below, please accept this award knowing that I treasure your friendship:

Casdok at Mother Of Shrek

Jen P at Find Out What Jen Finds

Maddy at Whitterer on Autism

Marla at Marla Baltes

Joy at Joy’s Autism Blog

Katherine at GFCF Mommy

Allyson at Autism - A Blog On The Spectrum

Bonnie at Coffee Faith Autism Explored

and to 2 of my newer friends;

Farm Wife 2 at A Day In The Life

and Mommy Dearest at The Quirk Factor

And of course, Childlife at In The Life Of A Child must be on my list too - the award goes both ways!!

For anyone I may have mistakenly overlooked, and to those of you who stop by occasionally to visit (to share your thoughts or just to read) - I also pass on the spirit of this Colours Of Friendship Award.

After all, where would we be without our friends?!?

Elissa

And please check out the video on our 100th post (below) - it’s our ‘thought’ or ‘reflection’ for the day!

It seems a number of our fellow bloggers have been hitting the 100th post milestone lately - and today we join them!

And we thought the perfect way to mark the occasion would be with a lovely uplifting message titled “Mother’s View On Autism”

This video is simple and heartfelt - it is a mother’s message of love and acceptance.

Enjoy!

Elissa & Steve

PS - Spend some time today reflecting on the ‘brightness’ that a person with autism has brought to your life.

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!!!

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

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!!!