Managing Autism - A Personal View

What Is Autism?

The technical answer to this question is somewhat longwinded and can be rather complicated to explain to someone who knows little about the condition.

And it was interesting to see recently on one of the message boards that we like to visit, that there was a discussion based around how you might explain your child’s condition to someone.

So… What Is Autism?

This question has always been a really tough one for us.  Whilst we ourselves understand what Autism is, and how it relates to Jack, we find it really difficult to put it into a short succinct explanation that people understand and can connect with.

We usually start with the social stuff, as this is what people see when they meet Jack.  We try to explain that Jack sees the social world through different eyes to many people, and that ‘typical’ social settings often make him anxious and quite irritable or stressed.  But for some people even this simple explanation never seems enough - we still have people look at us like they don’t understand.

Then if we ever need to go on to explain sensory issues, or other symptoms to people, it’s an even bigger challenge.

Some people associate their own ‘typical’ child’s behaviour to Jack’s by saying things like “oh yes, my child throws tantrums too when they’re tired”, or “my child doesn’t like shopping much either”, or “my child can be fussy about what they eat”.  But do they really ‘get it’???

So we continue to try and refine our definition and explanation, and when people do understand, it’s like a breath of fresh air to us.

Just maybe, one day we won’t even have to explain…..

But until then, if anyone can help with a short and succinct ‘lay persons’ version of what autism is, we’d really appreciate some input.

Well the last few days have been quite a ride - to say the least!!!

Earlier this week Steve went into hospital for the day for a routine procedure.  I had thought that this would be enough of a challenge for us (the 2 trips in and out of the hospital had to be fairly well planned with the kids on board).  So after having collected Steve from the hospital and arrived home I settled back thinking the hard work was over!  Little did I know…

An hour after his arrival home (he was sleeping at this point) I went to check on him and discovered his entire body was covered in a bright red rash and had completely swollen up.  A phone call to the hospital, followed by a phone call for an ambulance, and we were on our way to the Emergency Department.  Apparently he had had an allergic reaction to a medication he had been given earlier, and we were breathing a sigh of relief that his airways hadn’t been affected and that he was still breathing.

And to top off Steve’s hospital visit, I received a phone call (the same day that he was taken back to hospital) to tell us that his grandfather had also been rushed to hospital that afternoon.

I guess it was from here that our chaotic few days began.  We had had a real fright, and the kids were understandably quite distressed by it all, and whilst I was able to shuttle Annie off to some of our wonderful family, friends and neighbours, Jack stayed by my side the whole time wanting to keep track of what was happening with ‘Dad’.

So… thankfully after some medical attention Steve is now home and healthy.  We have had very little sleep over the past few days (even less than normal) and have had somewhat of a crazy time trying to keep on top of things, but we are now hoping for a few quiet days before Christmas (hoping anyway!!!).

And we are looking forward to catching up on blogging….. we will get there…..

Elissa

Jack was desperate to share his favourite photo of himself - dressed in his Raphael Ninja Turtle costume.

So here he is - ‘Raph Jack’

Jack says:

I love Raph the best, and my friend loves Leo the best, and my other friend loves Mike the best, and my other friend loves Don the best…

I like singing the Ninja Turtle song.

Mum, Dad and Annie say:

We’re all really glad we have a brave Ninja Turtle in our house to keep us safe!!!

PS - Please understand if you don’t hear from us for a day or two - we are all well but have a bit of a family emergency on our hands…

When people initially hear the word autism, it is often the more classic form of autism that they associate with.  From our experience it is uncommon for people to link autism to it’s higher functioning forms, or even recognise that autism covers a range of conditions across a spectrum.

Jack’s diagnosis sits most comfortably with the condition known as Aspergers Syndrome.  In one of our very early posts we discuss Jack’s diagnosis and how his characteristics fit into the autism spectrum.

Jack’s diagnosis was made during his year at Preschool, after we had already delayed his Preschool year due to his need for further social and emotional development.  Looking back we started to see the signs very early on.  But whilst we recognised differences in Jack’s development compared to other children, we really didn’t make any connection to a condition of any sort until things got to breaking point with how he was coping in his every day environment.  And even then we only made a connection to autism because we really ‘pushed hard’ for answers.

An article we found in the American Chronicle outlines the signs of Aspergers Syndrome, and comments on the fact that often Aspergers Syndrome is first noticed when a child starts school.  We ourselves were able to associate with this, and we felt that maybe this is because of the fact that Aspergers sits at the high functioning end of the autism spectrum and is such an ‘unknown’ in the wider community.

We still struggle all the time trying to get people to understand the condition, and we wonder at just how often this condition is overlooked in the community and school systems simply because people aren’t aware that it exists, or if they do know of Aspergers Syndrome they find it difficult to recognise the signs.

Before Jack’s diagnosis we had come up against people simply telling us that there were ‘behavioural and hyperactivity issues’.  Now we can see Jack for who he is - but how many other children may also be facing ‘behavioural and hyperativity issues’ without people really understanding the depth of the child.

It is our hope that one day people will not only understand autism for what it is - but also understand the spectrum as it is, and all that it presents us with.

Aspergers traits have been in full swing this week as we rapidly approach the peak of what is often referred to as the ‘Silly Season’ (what we better know as Christmas).  As things have been getting a little more hectic we’ve seen quite a lot of hand waving whilst talking, more intense talking and questioning (as well as the ‘mechanical’ robot voice every now and again), and more intense emotional ups and downs.  We’re also being held to strict timetables with Jack watching the clock continuously and keeping us on our toes with our schedules.  Structured activities have been a must for this week!!!

We’re pleased to say that we learned our lesson from the Kindergarten Christmas Party, and as a result avoided 2 potentially challenging parties this week (Steve took Anna to her creche Christmas Party on her own, and we made the decision that Steve would attend his company Christmas Party without the rest of us - excellent decision making we must say!!!)

We have recovered from the tears of the Kindergarten Goodbye (although Jack is still asking us when the next Kinder day is) and we also welcomed Jack’s new teacher to our home for a visit this week.  We already feel very blessed with having her as Jack’s teacher - she has been really keen to get to know Jack and his interests, and has been working very hard preparing the way for him to start school next year.

We chatted with Jack’s PreSchool Field Worker this week (thankfully we don’t have to say goodbye to her until the end of the first term of school when she has to close Jack’s file) and she is delighted with how he has progressed and in her words she expressed that ”I think Jack might just surprise us next year”.  I’m really hoping he will!  With all the hard work we have done this year in terms of paving his way for the coming few months, it would be lovely to see it all pay off and him thriving in a supportive school environment.

So to finish this week we thought we’d share some pictures of Steve and the kids having ‘drawing’ time.

Hope you all have a lovely week to come!!!

Elissa & Steve

Yesterday was a fabulous day - one of those days you remember for a long time, with the kids creating the most wonderful delights!

Over the past few weeks, I’ve found that I’ve been treated to some amazing surprises from Jack in terms of his development.  It’s funny, but sometimes I almost feel that his diagnosis of ‘autism spectrum disorder’ has strangely enough given him permission to shine in his own way (or maybe it’s just that Steve and I are viewing him through different eyes, and allowing him to simply ‘be’ who he really is?!?).

Well through the usual ups and downs of a typical day yesterday, Jack really showed me his ability to ’shine’.  It was a day for creating - and with materials that Jack loves.

Jack spent a lot of the morning in his bedroom, at his special table.  We call it his special table, because it’s the place he goes to ‘work’ when he needs some down time (usually when he’s heading towards a ‘meltdown’, or recovering from one!).  He also spends time at his special table before bed as the activity seems to be really calming on him.

Jack’s special table is home to some of his favourite animals and toys, including his Lego.  Quite a while ago we posted on “A Lego Breakthrough” which saw us going from Jack sitting and directing us as to what and how to build for him (not wanting to build with or manipulate the Lego himself) to actually constructing Lego creations himself.  So when Jack set himself up at his special table yesterday morning, it was a sure bet that he would be ‘working’ at his Lego constructions.  And work he did……….

When he finally allowed me in to his room to ’view’ his creations, I was totally blown away - especially when I stopped to think back to a couple of months ago, when ‘Lego play’ was an entirely different story.  I think the Helicopter was the piece that really made me stop in amazement - the detail was incredible, and ’shine’ it did!!

So with spirits high (and the kids starting to get a little wound up because it was too hot to play outside) I decided we would embark on some baking for the afternoon.  I had a fabulous Christmas Cookie recipe from Katherine over at GFCF Mommy (thanks Katherine!!!) that I had tried out previously on my own, but the kids were desperate to do some Christmas baking, so Cookies it would be.

Jack loves baking - I think it’s a combination of the methodical processes that we follow, and the ’sensory’ stuff (he loves using his hands when he can, and smelling both the ingredients and the finished product).  So as we prepared our cookie mixture, we had a few of the usual arguments over who would ‘measure’ and ‘tip’ what and who would mix, but all in all, it was an enjoyable time for us all.  And the results - delicious!!! (to say the least…)  I’m not sure that they will last past today (the kids keep finding reasons to ‘test’ them) but I guess that just gives us an excuse to bake some more!

So create we did, and what a memorable day it was…

….. yes, yesterday was really a day to SHINE!

Today we just wanted to share a poem that really touches our hearts - and for us, there could be ‘no other’ than the 2 beautiful children we are blessed with.

The Poem is by Sally Meyer, and is just one of many beautiful and touching poems that she has written, inspired by her autistic son.  If you have a chance, take a look at some of her other pieces here.

I Would Still Choose You
People have asked me what I would do
if I had the choice to change or cure you,
And often in times of worry or pain
I listen to that question, rebound in my brain.

Allyson over at Autism - A Blog on the Spectrum has tagged me for Christmas.  So here is my chance to share a bit more about myself and what I love about the festive season!  I also tag a few of my other blogging friends to share a little about themselves and Christmas:

Maizie at Maizie’s Blog

Maddy at Whitterer on Autism

and Jen at Find Out What Jen Finds

So ladies, it you can find some time over the coming days  - consider yourselves tagged for Christmas, and I look forward to reading your answers.  (Please then choose 3 or 4 friends to pass along to.)

“When people say ‘Christmas’ you immediately think…”

Family gatherings, carols by candlelight, fairy lights, and lots of yummy treats to enjoy.  I also think of happy time spent with the children watching Christmas lights, and enjoying the ‘magic’ of the season.

“Favourite Christmas memory…”

As a child, sitting by the Christmas Tree on Christmas Eve - basking in the joy of the occasion, watching candles flicker, and feeling like there was ‘magic’ in the air.

“Favourite Christmas song/carol…”

O Holy Night….. followed by any lovely renditions of the traditionals…

“Favourite Christmas movie…”

Definitely the “Polar Express” - the ‘magic’ of Christmas, ‘belief’ and learning to be the best we can really shines through in this lovely childrens movie - and the kids love it too!!

“Favourite Christmas character…”

I love Christmas angels (are these characters? - I think so!) - they are so beautiful and delicate and they have so much meaning to them, whilst still being fun.

“Favourite Christmas ornament/object…”

A Christmas Angel - could it be anything else?

“Plans for this Christmas…”

To spend some relaxing time with my beautiful family, enjoying the delights of the season, and reflecting on all the wonderful things we are so blessed with.

“Is Christmas your favourite holiday?”

Yes - by far it is the most magical - Christmas time allows us all to be children again!!!

Today we came to the end of one journey, as we looked ahead to the future, and the beginning of another journey.

Jack had his final day of Kindergarten today - a day that I had been anticipating with much trepidation.  Jack first walked through the Kindergarten doors almost 3 years ago now, beginning a journey that at the time we thought would involve 2 ’straight forward’ years of early learning and preparation for school.  Jack’s Kindergarten journey stretched to it’s 3rd year very early on, when the decision was made for him to spend 2 years in the ‘Junior Kinder’ group before moving to the ‘Preschool’ year (due to his ‘needs’ in the area of social and emotional development).  And when he crossed the threshold of the Kindergarten at the beginning of this year we had no idea of the learning curve we were about to embark on, or the challenges we were about to face.

We have made mention in previous posts of our journey to diagnosis, and this journey (taking place over the last 12 months - during Jack’s 3rd year of Kindergarten) was shared very closely with the Kindergarten staff - who for much of the time took the journey with us.  Jack’s teachers shared with us the highs and the lows of a really difficult time in our lives, and they supported us with every ounce they had to give, playing such a significant part in Jack’s growth and success over the last few months - giving him the love and care that he needed to become who he is today.

So I faced today with trepidation… today was the day that we would say goodbye… today was the day that we would step out of the Kindergarten looking to the future…

A ‘Christmas Concert’ had been planned to finish the day at Kindergarten today, and along with all the other parents, I arrived with camera in hand and a very proud smile to watch the singing and dramatic performances.  Jack was a delight, coping extremely well with all the activity, and even managed to take on a special role of ‘putting the toy lions in the cave’ during a singing performance.

The Concert finished with a visit from Santa (who had gifts for the children), and with the children presenting us (the parents) with handmade gifts, paintings and photo memory books of their time at Kindergarten.  It was a really lovely moment, and best of all, Jack was happy and relaxed, and really enjoying himself.

Before I knew it, departure time was upon us, and I prepared to say goodbye… knowing that today was the day that we would step out of the Kindergarten looking to the future… a future at school, and a future with new faces and new experiences…

Brushing the tears aside, there were hugs all around, and Jack even stood still long enough for ‘goodbye’ photos.  We will hold this year of Kindergarten very dear in our hearts.  It was the year that our world was turned upside down, but it was also the year that we discovered Jack, and the year that life began to make a little more sense.

And so we look forward… with the past in our hearts forever… thank you to the wonderful staff who helped us hold it all together… Jack will miss you… and we will miss you…

Jack standing outside Kindergarten as we left for home - saying goodbye and treasuring some wonderful memories!!!

Jack sitting with Santa, having received a gift at the Kindergarten Christmas Concert.

Posted by a Tearful Mum…

Choosing Gifts for Children with Autism

We found this article today that had a few helpful tips for people looking to buy a gift for an autistic child.  We thought it could be useful as we hit peak ‘gift giving’ time.

Over time, parents of autistic children will adapt to their child’s likes and dislikes in regard to ‘presents’ and ‘gifts’ - for many it’s a matter of trial and error in working out what ‘works’ for their child.  But for families and friends looking to buy gifts during the holiday season, a few tips or hints never go astray!!!

To ensure ‘gift giving’ is a successful event for an autistic child, one of the best things that family members and friends can do is to first talk to the child’s parents, and get a feel for what will work best with the child.

As an important tip for a gift bearer - an autistic child is unlikely to receive a gift in a similar manner to a ‘typical’ child.  From our personal experience we have seen many disappointed faces of well meaning gift bearers who want nothing more than to see excitement as their gift is opened.  Although hurt feelings are difficult to avoid when a child throws a present away unopened, or opens a present but then turns their attention back to something of greater interest to them, or opens a gift but then just stares blankly at it, it is vital to remember that these reactions are normal for autistic children, and are in no way intended to hurt or upset anyone.

PS - And if an older child has more interest in the paper than the gift - that’s normal too!!!