Managing Autism - A Personal View

“Make it a bad moment, not a bad day.”

 (Katherine Mylius)

When this past weekend rolled around, relaxation and fun were on the agenda.  So with this in mind, we headed forth to the place for kids… KIDSTOWN!

It’s quite a drive for us to get to Kidstown, and at first mention of it, Jack wasn’t interested in going.  But after some persuasion we managed to convince him that it would be worth the travel in the car.

We last visited Kidstown around 12 months ago, and had a fabulous time.  So with Annie a little older, and Jack a little more able to cope with the environment, this visit was set to be a blast!

And so it was!!

Here are some of the many photos we took:

The kids climbing the many steps to get to the top of the slides.

Jack preparing for the slide.

To start with Jack was a bit nervous - Steve and Annie are waiting at the bottom to catch him (going down on his tummy this time).

These slides are great for grown ups too!

Jack and Annie on the ‘bumpy’ slide.

Annie on her own… taking it slowly to start with…

But then it gets too exciting and she just has to go fast!!!

Jack on the ‘tractor’.

Finding our way through the maze!

We had such a wonderful time - we haven’t laughed and played together like we did at Kidstown for such a long time!!  It reminded us of what we need to do more of!

So when the time came to climb back into the car and drive home, we had 2 very weary, but very happy kids… actually make that 4 happy kids… parents get to be kids at places like this too!!

I pulled my car to a stop at the side of the street, and I glanced quickly out towards the road before I opened my door.  The traffic was heavy; cars everywhere, young people on bikes, and buses moving out quickly with the end of school rush.

A quick hand over was all that was needed - a few brief words as I took the bag, along with the drink bottle that had fallen from the bag’s side pocket.

“Any news?” I asked Steve, as I attempted a kiss on Jack’s head.

“Nothing to report… not ready to talk yet,” was the answer I got as the head below me ducked and looked out toward the distance.

A few more brief words and Steve was in his car and driving away, rushing to a meeting.

I looked down beside me to realise that Jack was gone, and as my eyes searched the foot path, I noticed a figure standing some distance away… at the edge of the nearby parkland, staring into the trees and head tilted - as though listening.

He had found the quiet… he had found the calm… he had found the ’sanctuary’ in the middle of all the noise and movement around us.

As I called to him he slowly turned.  He looked quietly towards me, not responding, but just listening… though not to my voice, it seemed, but to the distant wildlife.

And at that moment the world seemed to ’still’… he had found that moment, and he had recognised the beauty of what was in front of us that no one else around us could see at that moment.

Then a minute later his eyes focussed on me and he called “I hope a train doesn’t come past Mum”, and he ran towards the car and climbed in.

I smiled to myself and climbed into the drivers seat.

I felt blessed.  And after a long day, in that moment, I felt alive.

After juggling the drop offs between Steve and I this morning, I spent the day at work (relief teaching at the secondary school where I once taught full time) and ended up having lunch with one of the teachers assistants (aides).  I hadn’t met her before, but when she discovered I had an autistic son we chatted for a long time, with her asking lots of questions about life with Jack.  I think she really liked getting a parent’s perspective on a lot of things, and she was really interested in knowing how I handled life in general.  I was pleased in the fact that she had a very positive outlook on our discussion, and felt that the more people who knew about autism, the better.  We discussed the fact that people really needed to be aware of autism, and be able to learn about it in order for it to become more accepted and less judged.  Ahhh, a breath of fresh air… to have a conversation such as this out of a therapists office and away from our blog was really quite uplifting.

On a different note, Jack has recently reverted to the need for having something in his mouth constantly.  He chews on his toys (or anything else that he picks up ) and we have been trying to explain to him that not everything is appropriate for chewing.  His response to this is always “but I just need to chew it”!  So I’m wondering if anyone has any suggestions for a chew toy of some sort… preferably something that is age appropriate, that he could keep in his pocket or on a key ring.  We’d really like to be able to replace the chewing of toys and things like coins before he accidently swallows something he shouldn’t!

And Jack’s week at school?  Pretty good!  Despite the few issues that we’re working with him on at the moment, things seem to be progressing well.  One day at a time…

We’re still alive!!

It only seems like we’ve dropped off the face of the earth!

I didn’t ever stop to think just how hectic things would be once Jack started school.  I used to tell myself that things would ease up a little once he was at school 4 days a week (at the moment he’s having a rest day at home in the middle of the week just so that he can then make it through to the end of the week).  But it’s crazy!!  We’re still trying to fit in what we normally do in a week… but we’ve now added daily school drop offs and pick ups and extra meetings with teachers, kindergarten for Annie, and I’m also attempting to make a return to work… “it’s 6 1/2 hours”, I tell myself, ”just a day a week” - but the logistics involved in me getting there… ARRGGHHH!!!

But today, for the first time in a week, I took some time to ‘chill out’.  Annie and I went out to our favourite ice cream shop and for a play at the park.  We had a lovely time, and it was nice to forget about appointments and schedules for a while and just relax.

So our somewhat quiet and neglected blog will come back to life… and we’re looking forward to catching up on everyone’s ‘happenings’!

Keep smiling everyone… and remember to ask yourself, “what am I grateful for today”?

(Whatever you think of, it’ll make you feel good…)

Elissa

A whole day… and no hitting!!!

Wow, we can hardly believe it ourselves!!

After a couple of really productive appointments over the last week (with Jack’s speech pathologist and then with the counsellor from our State Autism Organisation) we feel like we are flying high today.

We have been working really hard on finding ideas and strategies to deal with Jack’s aggression (which stems from his anxiety) and over the last few days we have finally started to try some new things out.  We have also started Jack on a herbal tonic that is used to help calm and balance his moods (more about this at another time if we see some valuable results).

This week started with a couple of really difficult and challenging days (that left us feeling quite stressed out and worried), but we are so excited to report that yesterday Jack only had to be reminded about personal space once at school, and that today at home (and as far as we know at school) he has not physically hit out once!

Early days we know, and things will definitely be up and down… but for today we are celebrating… and giving heaps of praise (and Jack is proudly displaying his special stickers that he earned for his fantastic behaviour).

Hip Hip Hooray… no hitting today!

Ever get that feeling of being snowed under?  Not literally of course, no chance of that down here in Aus at the moment…

But ’snowed under’ in terms of stuff going on - that’s me right now!!  ’Snowed under’ mainly because I have been incredibly busy catching up on stuff that has needed catching up on for months!!!

And sorting out things with Jack’s school… and getting Annie ready for her first year of Kindergarten… and other appointments… yes, this has kept me fairly ’snowed under’ this week as well…

And I have diverted some of my commitments (okay, so I really shouldn’t say ’snowed under’ here - more a choice to change lifestyle!)… Steve and I have decided that we need to spend a little more time with each other… we tend to get caught up in things going on around us and neglect each other - so we have put ‘us’ back on the weekly agenda (even if it’s sharing an ice cream after we’ve flaked out on the couch in the evening).

So…

In the meantime, whilst I dig myself out from some snow, I have some kisses to share: 

Tulipmom planted a big one right on me last week… a big kiss, that is…

… actually it is a “chaste kiss given to say thank you for friendships and comments in the blogosphere.”

And this now means kisses for you all!

Please take a kiss and pass it on accordingly… we all need more kisses!!

Elissa xx

I mentioned in a post a couple of days ago, that my recent search for help and advice with Jack had people asking me where we usually turn for help and assistance when things get tough or ‘challenging’ or when we just need to talk through stuff…..

A friend of mine spoke to me recently about the troubles that she was facing with people close to her - that they were insensitive to her and her child in relation to her child’s autism.  She was becoming increasingly upset with the thoughtless remarks, and was at a loss as to what to do and how to approach the issue with these people… particularly when many of the insensitivities were displayed in public and she didn’t want to cause any problems between herself and these people…..

And I posted a while ago on a topic that many parents of children with autism face - that of being judged by others, and the grief of self judgement.

So all of this has had me thinking… when times are difficult and especially challenging with our children, when people are insensitive to our needs and our children’s needs, and when we’re going through the times of self-judgement and judgement from others - where do we go for support, and who do we find support from…?

… and then how do we deal with the unsupportive influences in our lives…?

I am very fortunate to have my parents who are very supportive of Jack’s needs and our needs as a family.  I also rely heavily on my blogging friends for a support network of others who are facing similar things in their lives - and who are very generous with advice and support!  I visit an online forum when I can, and I do have a couple of friends who I can call on for a ‘chat’ when things get tough and I need a friendly understanding face.

And of course, there are a couple of people close to us who really have no interest in recognising Jack’s Autism Spectrum Disorder, or maybe they do recognise it, but they just don’t stop to think that perhaps their thoughts and actions (or lack of thought and action) are hurtful and unsupportive…

But where else does the support come from?

Some of the professionals and therapists we have worked with over time have been incredibly supportive - both practically speaking and from an emotional aspect as well…

… but what do people do, and where do people go when they have little support around them?

… and how do people handle others around them who are totally insensitive… surely there must be a way to deal with the thoughtless remarks whilst still maintaining some sort of relationship with people.

I’d really love to hear people’s thoughts and ideas on this… for myself, for my friend, and for all of us…

… after all, we all need support.

I came across this quote today and thought it really should be my motto! 

Be determined to handle any challenge in a way that will make you grow.

(Les Brown)

Elissa

(Now this is a face of determination!!)