Managing Autism - A Personal View

Parenting a child with an Autism Spectrum Disorder can be very intense.  Children with autism have special needs and many require more attention than a ‘typical’ child, and this can be extremely draining on a parent.  Keeping yourself in the best state to cope with the day to day parenting of a child with autism is really important.

Having regular ‘down time’ or time to yourself cannot be overlooked as a coping mechanism.  Whilst it is often difficult to find a replacement carer for a child with autism, it is worth seeking out a family member or friend who is willing to give even an hour or so of their time so as to enable a ‘break’.  We are lucky enough to have family members who take Jack for a ‘holiday’ (weekend) every 4 to 6 weeks just so that we can have a break from the day to day challenges and ‘intensity’ of life with Jack.

A healthy diet and rest is also vital.  Parenting a child with autism will require having plenty of energy and stamina, as these children often need attention around the clock.  Sleep can sometimes be difficult for children with autism - this in turn disturbs the parents sleep period.  For parents of autistic children who do struggle with sleep, rest breaks should be taken where possible and plenty of fresh food should be eaten to keep the body and mind in as best condition as possible.

As a parent of an autistic child, there will always be days that are more difficult than others, and times when things will fall apart.  But finding ways to cope with the day to day parenting of a child with autism is really important, and may help with a smoother transition in getting back on top of things if they do come crashing down around you.

“I need a bit of a kick start.”

“Give me a break.”

“I nearly jumped out of my skin!”

Heard these types of phrases before?  Most of us have, and many of us use these or other similar phrases at times.

People often use words (or language) to imply a meaning that is vastly different to the words literal meaning.  Most of us understand these different meanings and can put the words into context, but to a person with an autism spectrum disorder, this ‘understanding’ can be very difficult.

This is because it is common for people with autism to understand and use language purely in its ‘literal’ sense.

With reference to the 3 phrases above, then, a person with autism may be surprised that you need ‘kicking’ in order to begin something.  And they may be confused that you want to be given something broken.  And they definitely wouldn’t understand how your body could jump out of your skin (and jump back in again - how is this possible?!?).

And for a person with autism, imagine how strange and scary the world would seem if you were brought up to love and care for people, and taught that hurting and killing people is bad, to one day have your mother (who was having a bad day) say, “If you touch that I’ll shoot you!” (When you went to pick up her precious antique china vase that had been in the family for generations.)

Language can be complex, and to many people with autism it can be a struggle.  So when communicating with a person who has autism, choose your words carefully - and if you are receiving blank stares in response to your language, try rephrasing your words or explaining what you mean.

Being understanding and thoughtful with the language you use can go a long way to helping a person with autism feel comfortable in their surroundings and in the social environment.

We came across this poem that seemed to fit our lives so well:

We’re back on solid ground and ready to face a new week.

This weekend I have spent some time reflecting on life.  I’ve thought about how life can sometimes take such a hold of us that we get swept up in what is going on and can’t seem to break the cycle.  We keep going sometimes because it’s too difficult to stop or because we don’t know how to stop.  Or maybe it’s that we can’t see another option - I know I feel this way at times.

I have again come to the realisation (I get reminded of it every couple of months) that as parents we often push ourselves so hard that we forget to really take care of ourselves and our own needs.

So a task for today:

• Take some time, whether it be 5 minutes or half an hour, and use this time to do something for yourself.  Maybe walk outside and breathe in some fresh air, or take a bath, or get creative with some art work.  Refresh yourself with some regular ‘you’ time and your body and mind will thank you for it.

Parenting a child, especially a child with an autism spectrum disorder, is a very important and special job.  Love and nuture your child, but also remember to love and nuture yourself.

I am currently on a chocolate eating marathon - it’s my ‘fall in a heap’ weekend (see yesterday’s post).  Will return to the real world and posting again tomorrow!

Elissa

xx

Some days feel like they will never end - you just keep wishing it was time for bed for no other reason than being able to say that the day is over.  In fact, sometimes it’s not just a day, but days that turn into a week or more.

Gloomy as it seems, this week has been a huge week of challenges, and being Friday night here in Australia I have to admit I’m counting down the hours until I can say, “this week is over”.  I’m putting my hand up to say that this week I have struggled, often feeling overwhelmed, but mostly feeling incredibly tired.

Parenting any child is hard work, but add autism to the mix and life becomes a different ball game.  Like other parents with children who have special needs, life is extremely busy and never what you could call easy.  Don’t get me wrong, I wouldn’t give my kids away for anything in the world, I love them both to bits.  But sometimes I feel like it all just gets too hard.

So I’m having a ‘fall in a heap’ weekend.  Chocolate is definitely involved, and my wonderful husband is taking some time off work next week to spend with me and the kids.  Life will go on, and I will battle on.  But days like today remind me that I’m only human, and it’s okay to say “I’m struggling right now, I need help”.

A task for everyone today - ask a friend if there is something you can do for them?

Elissa

People with an autism spectrum disorder are often extremely sensitive to pain, or don’t feel it at all.

With Jack, you can never be sure how the ‘wind will blow’, so to speak.  He often head butts and thrashes himself around without feeling a thing, being oblivious to any bruises or ‘hurt’ that occurs as a result.  Cut body parts (especially with blood) however, are a completely different story.

Today Jack was in the garage, attempting to do what he had seen Steve do often, trying to pump up a bicycle tyre.  Unfortunately he had decided to use his hand as opposed to his foot to operate the pump (couldn’t quite get the foot action) and managed to catch his finger in the mechanism and slice the top of it.

From the screams and sheer panic, you would think he had cut his finger off completely.  Not letting me near the finger to check the severity of the damage (though I could see blood pouring everywhere), he screamed and cried continuously whilst I packed he and Anna into the car and drove them to the local emergency department to see a doctor.

The result?  No major damage, in fact, not even worth stitching or glueing (as they do these days).  He let the doctor dress the wound (still not letting me near it) and we drove home, with me feeling like a totally overprotective panicky mother.

I guess it’s better to be safe than sorry though, and I couldn’t have taken much more of the hysterics on my own not knowing if the finger needed attention.

I’m hoping the pain in the finger will subside within a few hours.  I have to smile to myself though, throughout the whole saga, Jack still continued to head butt me and thrash his body around on the furniture in the waiting room at the emergency department.  Like I said above, it’s pain to one extreme or the other!

Thought for today: 

“You are happiest and most content when you value and appreciate the uniqueness of what you are and what you’re experiencing - without needing to compare it with anything else.”

(Paul Wilson, “A Piece of the Quiet”)

Yesterday I attended an Autism Workshop with Donna Williams and I have to say it was fantastic.  Donna had many wonderful ideas and strategies on dealing with different aspects of autism, addressing issues and problems in a way that I had never really heard before.  Her thoughts and ideas were so practical and user friendly, to the point where I was able to come home and try out some new strategies straight away.

Donna talked about the ‘Fruit Salad Model’ of Autism.  She noted that whilst most people understand that every case of autism is different, people also need to realise that we can’t address or treat the difficulties of autism with a ‘one size fits all’ approach.

During the afternoon I took many notes (which I am now still making sense of, but will eventually be able to put into a format that is understandable) and really had my eyes opened to different ways of tackling problems.

Donna talked a lot about finding the right way to work with different personality types.  She explained that the degree of success you would have in working with a person with autism depended very much on whether you approached the person in a way that suited their personality.  I found this really interesting and immediately did a mental check on how I approached Jack (and instantly found ways where I might be able to improve in my approach).

I went to the workshop seeking help and ideas in an effort to try and improve what I did at home with Jack, and I definitely found some answers.  In fact more than just practical answers.

As any parent with a child who has autism would understand, it can be nightmarish facing the real world where there is often harsh judgement and a lack of understanding.  For myself, it is often an effort to ‘face the world’ and the safety of home is very comforting.  Donna made a statement very early on in her workshop, she said, “there are heaps of people like me - if I run away, what hope do they have?”  This statement gave me a wake up call.  It certainly won’t change what I face when I go out into the world with Jack (or make it any easier), but her words have at least given me a sense of needing to push on regardless.  One day Jack is going to have to face life without me, and I need to make sure I am modelling a sense of courage and worthiness to him - otherwise, what hope will he have?

Yesterday was an invaluable experience.  I think anything that helps us in our understanding of autism is a good thing!

PS - Donna’s website is worth having a look at!

Elissa

I have been looking forward to today with anticipation.  Today I am heading off to a workshop with Donna Williams on “Understanding and working with challenging behaviours in people with autism”.

Donna Williams (who has autism herself) is an international public speaker and autism consultant and I am so looking forward to hearing her insights and ideas - which of course I will share here!

Here is a thought for today:

“When I loved myself enough

I came to see I am not special but I am unique”

(Kim McMillen)

 Elissa