Managing Autism - A Personal View

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

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.

Well after having some ‘catch up’ time after the events of the past week or so, I have so much that I want to post about!

Firstly is a recent award; I feel very honoured to be the recipient of ”The Spreader Of Love Award”.  A very big and special thank you to Michelle at In The Life Of A Child for this - my first reaction to the award was actually a little tear that came to the corner of my eye… (the award came at the end of my long and challenging week)!

All our blogging friends are extremely deserving of this lately, but I am going to pass this award along to Tulip Mom, who is busy preparing for a baby and who has made me cry recently (like I wasn’t crying enough already!!!) with a couple of very heartfelt posts, and to Laura, who doesn’t officially blog, but who is a regular reader of our blog - and who has plenty of love to share!

So now on to my rambling…

I’ve had quite a busy time making phone calls, and researching, and then making even more enquiries into getting some help for us all in dealing with Jack’s aggressive moments.  I’ve had some luck and have been referred to a counsellor (through our state Autism organisation) for some assistance, and have also been directed to a whole lot of resources that will be useful as we work through these issues.  Yay!!  We’re finally seeing some light, and a way to crawl out of the tunnel - well at least we’re heading in that direction anyway!

Steve and I have been tossing up the idea lately of trying to get together some sort of ‘coffee group’ for parents of autistic children in our local area.  There is a formal autism support group some distance away from us, but we’re really looking for something local as ideally we’d like to meet other parents and families who are close by.  So we’re going to get working on this idea and hopefully get together a small group of other parents who are interested in catching up informally on a regular basis.  (And if anyone has done anything like this before and has any suggestions or ideas.. we’d love to hear, and we’ll post on this more as we go along.)

Jack had his third day at school yesterday, which was also his first ‘full’ day.  He is coping really well in the classroom - in fact much better than we could ever have imagined, but he is really struggling in the playground (and this was certainly highlighted yesterday when he had his first experience of the long ‘lunchtime’ break).  We always knew that this part of the school day was going to be his biggest challenge, but now it’s just a matter of working out the best way to manage it.  His teacher has been absolutely wonderful and totally supportive (we couldn’t ask for better), and yesterday she arranged for him to spend the second half of the lunch break (when she wasn’t in the yard to supervise him) having ‘down time’ on the computer.  She also mentioned to Steve, when he picked Jack up at the end of the day, that the staff were going to work out the best way to structure lunchtimes for him - I’m going to meet with her about this later in the week.  We just feel so blessed that Jack is in such a wonderful supportive school environment.

In my search for help and advice over the past few days a couple of people have asked me where we usually turn for help and assistance when things get tough or ‘challenging’ or when we just need to talk through stuff.  This really made me stop and think, and I started to wonder myself.  I know that I always have my mum and dad as a support mechanism, but otherwise we simply rely on the support network that we have through blogging, and an online forum that we visit…  So don’t answer me now, but I’m planning on posting soon about support - in an attempt to discover where people find it, and how people deal with the unsupportive influences in their lives (around autism!!)…

Oh, and just quickly on a different topic, I must make mention of the fact that we had a snake in our backyard yesterday afternoon.  A passerby spotted it moving across the road and into our garden (we have an empty paddock across the road from us and bushland a short distance away).  It was a brown snake about 4 feet long - common in the bushland of Australia, but their bite can be deadly!  It disappeared into hiding somewhere in the garden, and we’re praying that it has decided to move on, (but for now the kids are confined to indoor play, and I have to admit I’m a little nervous about going out to hang the washing on the clothes line… silly I know - but I really don’t like snakes)!!  I’m just grateful that firstly, someone spotted it so that we knew it was around (seeing as Jack likes to hide in under the bushes in the garden), and secondly, that Jack was at school at the time when we had about 6 men (who were working on a building site a couple of doors down and who had spotted the snake as they were driving along our street) going through our garden with shovels trying to either kill it or scare it away.  I don’t think I could have coped with his questioning and panicking - it was enough trying to explain later to him why he couldn’t go and play outside!!

So now that I’m nearly caught up…!!

Have a great day everyone,

Elissa