Managing Autism - A Personal View

It may seem like we’ve fallen off the face of the earth… we haven’t really… just searching for a ’sense of peace’ here at the moment.

After a short bout of illness (nothing serious), we’re all feeling fit and healthy - but quite caught up in sorting out life.

Sometimes life throws things at you - probably just to make you stop and think, and take stock of where you’re going and what you’re doing… and we’re at that point here at the moment.

There are a couple of really fun memes that I have on my list of things to do (thank you to those lovely blogging friends who have inspired me with some fun ideas) and also quite a large awards party to hold (everyone will be invited for sure!!).

So please hang around… it might be a little while before we’re back up and running properly, but we will get there.  It’s just time for a bit of a sabatical… time to ‘find some peace’.

PS - Please leave a message if you need us… we’re not completely out of the picture!

Last night we made the switch - that is, we turned off all the lights and appliances in our home for an hour - Earth Hour.

The kids were really caught up in the moment.  By candlelight, we had some great discussions on the importance of keeping our planet / earth healthy.  The kids wanted to know what would happen if the earth got too sick, and we talked about the fact that it would impact on all of us - the plants, the animals, our natural environment, and of course people.

We finished our Earth Hour with the kids finally falling asleep on the living room floor.  (And I have to admit, it was really lovely to have the time together without any distractions from technology.)

These kind of events, and daily consciousness of ‘keeping the earth healthy’ are important for us all to bring into our lives.  Let’s keep our earth safe… let’s keep it healthy for our children and the generations of children to come!

Annie’s sleeping face (asleep before she managed to get the sunglasses off!) says it all.

It’s Friday, and being nearly the end of the week, we’re kind of a little frazzled!  Not that you would think we could be after a long weekend away… but it just kinda happens!

We had a really nice Easter weekend, catching up with family and friends… we stayed away a little longer than we had originally planned, but thought we needed to treat ourselves to a couple of extra days break!

So we made it home a few days ago, and then proceeded to spend copious hours seeing to some ’stuff’ that had been needing our attention for quite a while… and here we are… the end of the week again…

We have lots to catch up on - posts to write, and blogs to visit.

Ahh… busy, busy, busy!!!  Memories of a relaxing weekend disappear very quickly!

Elissa xx

And a sneak preview of some news with Jack - more success to report on some of the ‘aggression issues’!

Coming soon!!

Thank you everyone for your lovely birthday wishes!!

I had a lovely birthday, and was thoroughly spoilt by my beautiful family.

With the Easter weekend fast approaching, we will be taking some time away from blogging. We’re spending the weekend with family and friends, and will return to blogging early next week some time.

So have a great weekend, and wishing everyone a happy and safe Easter!

Elissa, Steve, Jack & Annie

It’s been almost a week since my last post - a week that seems rather cloudy as I look back on it.

In fact I missed my Wordless Wednesday this week… but it was going to go something like this:

Yes, just a snap shot of the week that has been.

(But at least the picture gave me a bit of a giggle when I needed it…)

That feeling of being overwhelmed seems to have been hanging around here a bit recently.  And it’s nothing in particular that stands out as being the ‘overwhelming thing’… it’s just the combination of everything working together this past week, and it has left me feeling pretty much ’steam rolled’ or ‘hung out to dry’…

I mentioned to a friend a couple of days ago that I had found things really difficult this week.  She was really comforting in her response… she shared with me her own similar experiences with what I had faced this week, and she reminded me that through sharing both our good times and our more challenging times, we help each other.

So it’s time to face the world again… it’s time to turn to some friends… and it’s time to share some stuff…

Jack starting at school this year has been a lot more wearing than I ever thought it would be.  Dealing with the normal stuff that comes with starting school is enough for anyone, but add to that the extra stuff that is required for a child with special needs and (as I have discovered) it can be enough to totally blow you out of the water… or in my case, leave me feeling quite emotionally paralysed at times, stuck… and not quite sure of how to move forward…

Jack began the school year attending 4 days a week (as did all his classmates).  The week just gone saw this increase to 5 full days for all of his class.  For Jack, 4 days has been enough for him to cope with this far.  He has been having 2 days at school, a day’s break, and then another 2 days at school.  Wednesday’s have been a day for him to rest and recouperate… and he has desperately needed this time.  So with 5 days looming ahead in the week, we made the decision that regardless of what the rest of the class were doing, in order to survive the week, Jack would have a full day’s worth of time at home. 

So this last week we arranged to pick Jack up from school at lunchtime on 2 days of the week - he has been coping better with the mornings so we thought this would suit him best.  Great in theory, but dragging him away from school when the rest of his class were staying and of course then trying to talk him through a change to his normal school day routine was not easy… actually the first day of this was quite a disaster - particularly when I brought him home and tried to talk him into having a sleep or at least a rest lying down.  He pretty much cried and screamed at me the whole afternoon and evening, sending the stress levels in the house sky high!!

Day 2 of this arrangement, Thursday, was out the window before it even began.  A paediatric appointment late morning kind of threw the day into confusion from the start… I kept Jack home from school in the morning, with the idea that we would attend the appointment and then take him to school afterwards.  We arrived at the doctor’s office for our appointment only to have to wait 1 1/4 hours… have Jack totally ‘meltdown’ in the waiting room (and injure me in the process) and then ‘meltdown’ again in the doctors office (when we finally got in there).  This pretty much set the tone for the rest of the day.

I have to say that it wasn’t the best appointment that we have ever had with a specialist.  In fact, without saying too much, it left me feeling pretty distressed, extremely confused, and really down and out.  Tears came in bucketloads that day… and the next… and I realised very quickly why people have always said to find specialists who know what they’re talking about, and who are very good at what they do.

Thankfully Jack’s speech therapist rescued us at this point.  After a long chat with her (the day after our paediatric appointment) I managed to pull myself together enough to see forward from our bad experience.  And with her help I managed to schedule an appointment for us with a more highly regarded specialist to take over from where we had left off the day before.

That evening I stuck a quote up in front of my computer… “When It’s Dark Enough, You Can See The Stars”…  Yes, this week signified a pretty black night, but we were blessed, and there was a star twinkling…

So the road ahead of us is steep.

Jack’s anxiety around change hasn’t been easy to manage over the past few weeks, but we really need to try and help him harness that.

I also need to try and find a way to balance my life a little more… very difficult though when you’re a parent, and caught up in doing everything you possibly can for your child.  (And a mental note: find a way to cope with specialists who leave you feeling like a mess… or find a way to take the emotion out of the task… hmm, difficult either way…)

But for now it’s onwards we forge… there will always be ups and downs… but things will be okay just as long as we can find the twinkle of a star in the night…

And on that note - last week Casdok had a fabulous Meme on her blog that involved placing a message on a bottle and sending it into the blogosphere.  I thought it was a great idea, so I mustered some energy and took up the ‘technical’ challenge of getting the message onto the bottle!

Message In A Bottle Meme

1. Compose a message to place in your virtual bottle

2. Right click and Save the graphic below

3. Use a graphics program of your choice to place the message on the picture

4. Post the meme and these rules on your blog

5.Let Mimi know so she can add you to her list of bottles.

My message has been quite significant to me this week, it’s one to remember when times are particularly challenging.  (I know the print is small - so for those of you who can’t quite make it out below, the message says:  When It’s Dark Enough You Can See The Stars.)

So have a go - your bottle will remain afloat in the blogosphere ocean for all blogernity.

Elissa xx

Ever get the feeling that life is leaving you behind??  Please bear with me while I attempt to play a little catch up!

… PS - Today’s real post is below…

… PPS - Somebody please kill that SPAM!!  ARRGH it’s driving me crazy!!

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

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.