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.

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

It seems a number of our fellow bloggers have been hitting the 100th post milestone lately - and today we join them!

And we thought the perfect way to mark the occasion would be with a lovely uplifting message titled “Mother’s View On Autism”

This video is simple and heartfelt - it is a mother’s message of love and acceptance.

Enjoy!

Elissa & Steve

PS - Spend some time today reflecting on the ‘brightness’ that a person with autism has brought to your life.

Reading Jen P’s post today, over at Find Out What Jen Finds, I was again reminded of the lack of awareness some people have with their attitudes towards the behaviours and symptoms of autistic children and the relationship of these behaviours and symptoms to the style of ‘parenting’ they receive.  Jen P makes mention of the ’suggestions’ she received on an occasion in regard to her son and her respective ‘parenting’, something that I’m sure most (if not all) parents with autistic children receive at some point in time - often from people who have little understanding of autism, and no thought for the hurt that they cause the parents.

I’ve spent the day pondering the whole ‘parenting and autism’ thing.  Parenting style (or for that matter what some people consider ’lack of’ parenting) is simply not the cause of autism, and will in no way ‘bring on’ an autism spectrum disorder.  Sadly though, an autism spectrum disorder (and the behaviours and challenges that an ASD brings with it) may cause many parents to question their ability to effectively parent (and unfortunately the parents’ questioning of their own attributes can be escalated by the attitudes of those around them).  Even after a diagnosis, and when people are aware of a child’s autism spectrum disorder, many family members and friends will still link the child’s behaviours back to the parenting.

Speaking from personal experience, an autism spectrum disorder can place a great deal of strain on social relationships.  An autistic child’s behaviour will often have to be continually explained to others, and a parent’s social interactions may be continually interupted and challenged.  But for many parents, social contact may drop off not only because it all becomes too hard to manage the child’s needs in a social environment, but also because of the scrutiny that they come under in regard to their parenting skills.  Parents often find themselves subject to criticism (whether it is intended as ‘well meaning’ or not) and sadly, a lack of understanding in regard to what they do and how they ‘manage’.

So I write this post as a plea to fellow parents of ‘autism’ - believe in yourself and your abilities, and remind yourself every day of the wonderful job you do.  Hopefully over time not only will there be a greater recognition of autism in itself, but of the way in which we parent - with total dedication, and all the love in the world for our kids.

One thing is for sure, as a parent of an autistic child, not only do you have to master the typical parenting skills, but you also master the specialised skills.  Of course we will always have days where we feel like we have ‘no skills at all’ (I know I do regularly!!!), but without a doubt, we are parenting the very best way we can!

Elissa

How can it be?

Why?

What does this mean?

How do I know?

But… what do I do now??

As we move closer towards the end of the year, we find that we often spend time reflecting on the events of the year just gone.  2007 has been a huge year for us as a family - one that has seen us tackle many new challenges, and grow incredibly in strength and personal ‘understanding’.

We were talking last night, reflecting on the diagnosis of Autism Spectrum Disorder - a big part of our learning curve this year.  And one thing that we debated was - “What was the biggest question?”, or as Steve put it “What was the ‘burning’ question?”  We spent a long time thinking over all that we had struggled to come to terms with throughout our journey to ASD diagnosis and decided that our most ‘burning’ question was - “What do we do now?”

It’s funny, when you deal with specialists ‘diagnosing’ your child you’re provided with plenty of ‘this is what autism is’ information, but then once you’ve kind of worked out how the symptoms fit with your child, it often feels like the really hard stuff is let to sit - or referred on to someone else!

It has taken us a long time to start to find the answers to “What do we do now?”

And even now, when faced with a list of ‘what we should do now’, it becomes “What do we do first?”

So what was your ‘burning’ question that came with (or without) the diagnosis?  We’d love to know…

We have found one of the most challenging things to deal with in relation to Jack’s autism spectrum disorder, has been trying to make our way through what sometimes seems a never ending list of specialists to see, therapies to organise, and strategies to implement.

After we had Jack’s official diagnosis confirmed, we emotionally ‘fell in a heap’ (so to speak).  The months of assessment had really taken their toll and the relief at finally having an answer was quite overwhelming.  Probably like many parents who have travelled the long and difficult road to diagnosis, we found ourselves thinking that once we’d got that far, the hard bit was done.  But of course, it was only really beginning.

Some days we look at the ‘list of to do’s’ and it’s a case of not even knowing where to begin.  Appointments and phone calls are usually challenging in themselves - trying to work around a routine so that life doesn’t get too disrupted, and trying to choose times where behaviour will be less of an issue so that you can have proper conversations with professionals (rather than fighting your way through a conversation because your child needs your attention or is yelling in the background).  To then try and incorporate newly learned strategies (that are designed to assist your child) into everyday life adds another dimension to the ‘list’.

We have conceeded that one thing is for sure - being organised is absolutely vital.  Although it also pays to be flexible and willing to ‘go with the flow’ if needed.

We have found that if we think too far ahead it all becomes too hard, so now we take one day at a time, do what we need to do (as best we can), and trust that eventually we will get there.

People often ask us the question, “how do you cope?” or “how do you do it?”

Usually they are referring to some issue relating to Jack’s autism spectrum disorder.

It’s funny, but our coping strategies for much of what we face have become such a normal everyday part of life that they no longer seem ‘a big deal’ or ‘autism related’.

Most parents have strategies in place to deal with challenges they face in relation to their child - this could be anything from difficult behaviours, to learning difficulties, to ’childhood fears’.  Parents have methods in place to help their child manage life in the best way they can.

Parents of a child with autism are no different.  Yes, many of the strategies may be more involved and specialised than those used for other children, and they may require more persistent use and focus, but overall they have the same purpose and are put in place for the same reasons - to help the child (and parent) manage life in the best way they can.

We often take for granted what we do on a daily basis.  Occasionally we might overhear a parent describing a tantrum that their child threw in the middle of the supermarket - usually the parent is mortified and completely at a loss as to how to manage such behaviour.  At these times we usually smile and reflect on how life evolves.  It is not our intention to disregard this other parents distress at all, but tantrums have become so ’second nature’ that we don’t stop to think about them much now.

As parents we adapt to what life presents us.  It’s only when we stop and look around us that we realise that everyone has challenges at different levels and that amazingly enough, the strategies that develop to manage and cope with these challenges simply become a way of life.

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.

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.