Managing Autism - A Personal View

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

What a week this has been!

Casdok posted a few days ago about having “one of those weeks” and it seems in my blog travels that many of us have had similar sorts of weeks… well I know I have anyway…!!

After my recent post, “Sometimes life just feels too hard”, I sat down to respond to the many comments I received, and was quite taken aback.  I was touched by the many ’shining lights’ that were within the comments, and the thoughts that were shared.

The comments posted were so much more than supportive and inspiring… through the comments left I discovered what a truly beautiful thing people involved with ’special’ kids share… we share a strength that knows no boundaries (especially when things get tough - and boy do they get tough!!), and we share an ability to keep on keeping on… no matter how hard it gets (and despite the moments we have where we just want to give up!)…

After my post this week I felt understood - all kids are different for sure, but sometimes people have to walk in similar shoes to really understand… and I feel blessed that I have such wonderful people around me who understand what it is like to walk in ‘different’ shoes…

Jack’s first day of school was a big moment in our house this week, and as Steve posted, one that went smoothly and successfully.  His first two days of school were short days (only 3 1/2 hours each day) so this week will be the challenge - he faces full 6 1/2 hour days.  For the first few weeks of the school term the ‘Prep’ class has Wednesday at home as a rest day - Jack will really need this day, and his teacher has suggested that if we need to we can take extra ‘rest’ days or afternoons as we go.

So the tears finally eased by the end of the week… and yes, the sun is starting to poke through again.  And I truly hope that for many of my blogging friends that this week the sun will again begin to come up in your lives.

There is one thing that I’ve worked out over the last few days - the difficult and really challenging times that we face definitely make us stronger, and allow us to really appreciate the wonderful times that we have in our lives.

Much love and hugs to you all!

Elissa xx

Sometimes when we’re in the middle of life’s challenges we don’t always see straight, and we don’t always think straight… In fact, in these moments I often don’t even notice what life has become, or what’s in the process of happening to me and those around me until it is all too late.

At the end of last week, I fell in an emotional heap.

As I sit here and write this post I even now find it difficult to pin point just what happened to bring everything crashing around me, but it was more or less a build up of stress, anxiety, fear… and probably a bit of unresolved anger and grief…

I had got to a point where life had become too hard, and it was enough for me to just survive - happiness had seemed to disappear, and I was struggling to find a way out of this.

The main issue I came to realise that I was dealing with was Jack’s aggression - it has been on the increase over the past few weeks (and the long holiday break has certainly been no help here, with our normal routine out the window).  I have been finding it harder and harder to deal with Jack’s physical strength, and have been struggling to cope with the consequences of all of this… the physical attacks when he ‘melts’ usually result in bruised legs, scratches all over my arms, and a general feeling of being totally helpless.  And I’ve also been extremely concerned over his roughness with Annie (just in general play) - there have been times when she has been really scared when he has pushed or hit her… and this has really had my stress levels heading ’sky high’.

Jack has always been intense, and his aggressiveness has been part of this.  Before his autism spectrum diagnosis I used to feel so frustrated with him - constantly… I would do everything I could in terms of behaviour management… I read every book, watched every ‘parenting’ video, and went to every class possible, just to try and find ways to manage what was happening.

And I guess after the autism diagnosis, my heart broke and I felt a complete emptiness inside… not because of the autism itself, but because I knew at that moment that handling Jack’s aggression was never going to be an easy thing… because I knew at that moment that the ‘typical’ way of dealing with his aggression was never going to work…

… and soon after the diagnosis it didn’t take long before the anger started to boil up… I began to feel angry that he was so aggressive, and angry that he couldn’t see how he was making people feel… and angry that he couldn’t control his behaviours… and angry at myself… oh so angry at myself… and then it just became grief…

… I guess I thought I’d dealt with all these feelings, but by the end of last week I realised that I hadn’t.  I was facing a whole lot of hurt… and still that emptiness inside… and the judgement from others who see the aggression still hits me hard ’straight between the eyes’.

I’ve cried rivers of tears, I’ve sunk to the bottom….. but I’ve also now realised that I’m the only person who can get me out of this.  I’m the only person who can change how I feel, and I’m the only person who can pick myself up and find a way to move on.

So I’ve started.

I’m going to find some help - both for me and for Jack… I don’t want to change him, I just want to help him find a way to manage his aggression, and help him find a way to be safe.

The tears will ease soon I am sure, and the sun will start to shine again… I’m hoping time will ease the pain of today…

“… but regardless, today and always, I love you Jacky with all of my heart, you’re my beautiful boy.”

Mum xx

We were away for 48 hours but it feels so much longer - funny how time seems to pass.

This past weekend, the kids and I headed away for a break to my parents home.  I had a chance to spend a little time on my own with plenty of ‘babysitters’ around, and we all had a chance to get away from ‘life at home’ (which did us all some good).

For the last week or so I have been struggling with judgement - or I should say, self judgement.

I wrote recently about dropping to a really low point with the kids, where I was trying just to keep my head above water.  It is usually during these times that the self doubt and self judgement tend to set in, but I thought this time I had avoided it - that is, until it hit me square in the face late last week.

Self judgement serves no purpose other than to eat away at our self confidence and self esteem, but when you’re caught up in the moment, it is difficult to see past your own doubts and feelings of inadequacies.

So although I was getting back on top of things with the kids, by the time the past weekend rolled around, I was floundering in a sea of self judgement.  Thankfully some time spent with my aunt (and some time to talk a whole lot of things through) saw me heading back up the scale of self confidence.

Living with an autistic child (or for that matter any child with special needs), is very different to living with a ‘typical’ child.  And I find that most of my self judgement begins when I feel like I’m being judged by others.

But I have to remind myself that I’m a great Mum - I love my kids with all of my heart and they love me.

After my weekend away I now have a new quote stuck up on my wall at home:

“I can just be who I am”

(Louise Hay)

Judgement removes a person’s ability to do this.

So regardless of what’s going on around me, and what others think or say, I need to remember this most of all.

Elissa

Messages kept mysteriously appearing in our inbox yesterday - funny what the Universe throws at us sometimes…

This one I thought was really valuable to share.

A well-known speaker started off his seminar by holding up a $20.00 bill. In the room of 200, he asked,‘Who would like this $20 bill?’ Hands started going up.He said, ‘I am going to give this $20 to one of you but first, let me do this. He proceeded to crumple up the $20 dollar bill.He then asked, ‘Who still wants it?’ Still the hands were up in the air.

Dirty and trampled upon, or crisp and clean - our value doesn’t change!

Elissa

Sometimes when things get really rough, and life just seems too difficult to cope with, we forget how truly lucky we are.

I had a message in my inbox this morning, from a friend who I had not heard from for quite some time.  She wasn’t aware of the struggles I had been facing over the past few weeks, but her message arrived at just the right time.

So thank you Ivonne, for this beautiful message, and for just knowing how perfect it was for me today.

Now I pass on the message to all of you - please share it with others, and “Blessings to You”

A Beautiful Message

Today, hold someone’s hand, give someone a hug, or simply reach out with a smile - give someone else the feeling of being blessed and loved. 

When I look at the beautiful faces around me I know just how blessed and loved I truly am.

Elissa xx

To my wonderful blogging friends - thank you for your kind words over the last few days… that have lifted my spirits, and comforted me in the knowledge that I’m not alone.

I’m in the process of catching up on some sleep, and getting ready to face the new week, with some of that strength and patience I was looking for.

As you all know, there’s always some more courage to be found…

Okay so a good night’s sleep would be nice… in fact so nice I think it would be too good to be true if it really happened… I’m really tired and…

Another public meltdown yesterday, and I bore the brunt of it.  Granted it wasn’t at the shopping centre, or in front of strangers…

It was in front of new friends, who were very understanding and really supportive…

…but still really hard to face people when it happens…

(Inside I scream - “Can I be someone else just for a day - I’d like to try a different job today -PLEEEASE!!!)

And to think all was going well to that point… What could I have done differently?  What could I have done differently?  What could I have done differently?

Maybe thrown my hands up in the air and said -”this is all too hard - I’m not dealing with your stuff any more!”  No, that wouldn’t have helped at all - just created more chaos in fact.  If social niceties are incomprehendable, a raving mad mother would most likely cause a total shutdown…

… and really I would never quit… I’m not here to quit - I’m here to love… totally, unconditionally… I know that more than anything…

Tears come too easily at the moment, and I know it’s just tiredness.

Sometimes I cry for my kids and for me…

I cry for them because I love them…

I cry that one day it might be easier…

… a break would be really good.

Maybe some annual leave?  Mmm… shame this job doesn’t provide those benefits…

Some sleep would be nice, and some more strength, and some more patience… please God…

I’ll find it today

How often do we find ourselves in situations with our kids where everything seems to be overwhelming, too hard to cope with and we just don’t know what to do anymore.

I had a moment like this a couple of months ago where no matter which way I turned, I was finding myself sinking further into a situation that I just couldn’t find a way out of, or an answer to.  We were having to make a decision about Jack’s schooling that was causing us a great deal of stress and uncertainty.   It was the most debilitating feeling, and thankfully as I was reaching breaking point, I made the decision to pick up the phone…

The person I called was Jack’s preschool field worker.  At the time I just needed an outlet - someone to talk to and who might provide some hope.  And it turned out she was just the person I needed, providing the most wonderful guidance and support, and easing much of the heartache I was feeling.

Later she sent me a card. The card read “It takes courage to say ‘help’.”

And when I thought about it I realised that I had been courageous that day.

Too often we struggle with things ourselves because it might seem too hard to ask, or we might not know who to ask, or we might not want to burden others.  But the relief that I felt in making the phone call for help was incredible… it just took some courage…

Elissa