Managing Autism - A Personal View

After our trip to the paediatrician last week, we had an appointment today for Jack to have his hearing tested.  We have never really had any concerns with his hearing, but the paediatrician felt that we needed to have it checked anyway.

So today we returned to the same specialist consulting suites, this time feeling just a little more anxious after the events of last time (the 2 major meltdowns), but a little more prepared in terms of an action plan in case things went a little crazy.

I had left Annie with my sister and her kids (so that there were less distractions for Jack), and had made a stop at the shops on the way to the appointment to buy Jack a sticker / activity book.  So far so good.

When we arrived at the consulting suites, Jack looked at the building and I noticed his body tense up a little as he said “do we have to see the same doctor?”  I assured him that this time we were seeing someone different and that it would be a really quick visit.

We checked in to reception and the first thing I did was ask how long the wait was.  The receptionist told me it would be about 10 minutes, so I said that we would go for a walk and come back.  Thankfully there are quite a few large areas of garden and lawn around the buildings where we were, so Jack happily walked with me (listening to the birds) and then we sat quietly under a tree just outside the consulting suites to look at his book as we waited for his turn with the audiologist.

When we were called in for our appointment I was really glad I had made the decision to wait outside in the garden, because the waiting room had become quite busy and noisy (and very stimulating)!!

Jack looked a little anxious as we made our way down the same long hallway as we had been last week when visiting the paediatrician, but relaxed again as we entered the audiologists office, and he happily sat down to look at his book.

From here things went really smoothly.  Jack happily sat in the closed booth to have his hearing checked, and then sat beside me as the audiologist and I spoke.  The audiologist had a lovely way with him, and he was really calm through the whole process.

Then the moment came where Jack had reached his threshold for waiting and he stood up and said “it’s time to go, I must go now or I’ll be late for school”, and with that he headed towards the door.  Thankfully the audiologist and I were nearing the end of our discussion, and she was very understanding in the fact that at that point we just needed to go.

So off we went.  We did have to wait at the reception area for a couple of minutes on our way out (to settle the account), but Jack headed straight for the door and outside, and waited for me under the tree that we had found earlier.

So we left… with me breathing a big sigh of relief that we had survived the appoinment without a meltdown!

Now I just need to work out how to bottle this whole ‘meltdown free’ experience… hmmm…

Elissa

The theratubing arrived at the end of last week (to make Jack’s neckband) and it has been a huge success!!  He took to it straight away and hasn’t looked back!  Because of the convenience of having the band around his neck, Jack has actually ditched the chewy tube in favour of the theratubing (although we have insisted that he use the chewy tube at bedtime so that he doesn’t have anything around his neck whilst he is going to sleep).

I have had a couple of people ask me why Jack has the band around his neck… what is it for and why does he chew it all the time?  I guess the chewy tube looked more like a toy so people didn’t take much notice of it.  With the band it’s probably more obvious to people now that he’s chewing constantly, so I’ve had to explain the whole ’sensory processing’ thing more often…

But regardless of the explanations, we’ve hailed it a ‘chewy’ success!!

Elissa

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

Ever get the feeling that life is leaving you behind??  Please bear with me while I attempt to play a little catch up!

… PS - Today’s real post is below…

… PPS - Somebody please kill that SPAM!!  ARRGH it’s driving me crazy!!

Thank you to everyone last week who shared thoughts and ideas on ‘chewing’ alternatives for Jack.

Chewing Gum was our first thought, but as he can’t have that at school we have now found a couple of great alternatives.  After much time spent browsing (and getting Jack’s approval on the ‘look’ of the different choices) we finally decided on a chew tube for home (which he now has) and we have also ordered some theratube to make a neckband for him at school.

His chewing at school is our biggest problem due to the fact that whatever we give him has to be fairly unobtrusive.  Being in a mainstream class with all ‘typical’ kids, we don’t want him singled out as having a ‘chew toy’.  So hopefully the theratubing will work for him.  Neckbands and wristbands are fairly popular with kids so with any luck, the theratubing will look just like any other neckband… except that he will also be able to chew on it!

Just as a side note, there is a product called ‘chewellery‘ that we looked at (which is a necklace or bracelet that can be chewed) but all the pictures advertising it has a girl wearing it so Jack wouldn’t come at it!  It does look really good though, and would make a great alternative to a ‘chew toy’.

And so as we head towards autumn and then winter here in Australia, and the need to ‘cover the feet’, we will next attempt to deal with the sensory issues with the feet… one day at a time!

Julie, at Autism Blog, posted this week about siblings… and in response to Julie’s post, Marla had some really interesting insights into life as a sibling of a special needs child.

So with this in mind, I decided it was time for a post about Annie - and what she brings to our lives and to our family.

Our blogging friends and regular readers will know of Annie, our delightful and beautiful little girl (yes, I’m biased - but I’m her Mum!!).

Annie entered the world just over 3 years ago, and from the moment she arrived in our arms, she brought with her a sense of calm and great sensitivity to those around her - she was like a breath of fresh air in our very ‘intense’ household.

Growing up as a toddler and now as a small child, Annie has continued to provide our family of four with a sense of calm, and her sensitivity is still intuitive.  In her own innocent way, she ’just knows’ when things are particularly challenging - always responding to our needs with ‘Annie style support’; cuddles, cheek stroking or hair rubbing.  She looks at you with eyes of knowing, a look that is often beyond her years.

Annie spends much of her play time dancing and singing… in her own little style of course, and when she’s not dancing or singing to herself she is playing house.  Her dolls are her babies, and she nurtures them just like she nurtures everyone else in the house.

Over the past few weeks it seems like our little girl has grown up considerably.  Maybe she’s just started a new stage of her development, but we’re sure it’s no coincidence that this ‘growing up’ has coincided with Jack now being at school for 4 days a week.  Annie misses Jack terribly whilst he is at school, but at the same time, she now has the time and space to be her own person… and to spread her little wings.  She relishes our ‘girls days’ and is really thriving with her speech, creativity and play.

Growing up in a world that is often tumultuous is not easy (even though living with a challenge of some nature is common place for many children in our world)…

Annie seems to take the meltdowns and challenges all in her stride.  She is very nurturing towards Jack, and very accepting of how things are… but I guess she knows no difference to what life is for us.

I commented on Julie’s post about the fact that I have often wondered about the effects of Jack’s autism spectrum disorder on Annie.

At times we have had to work through ‘copycat’ behaviours with Annie, but then to her, what she sees is normal… and I guess to us, it is normal.

Only time will tell…

I simply have to trust that with our support Annie will continue to grow to be the beautiful person she is…

… loving, caring, and so very accepting of everything around her.

We love you Ann xx

“Make it a bad moment, not a bad day.”

 (Katherine Mylius)

When this past weekend rolled around, relaxation and fun were on the agenda.  So with this in mind, we headed forth to the place for kids… KIDSTOWN!

It’s quite a drive for us to get to Kidstown, and at first mention of it, Jack wasn’t interested in going.  But after some persuasion we managed to convince him that it would be worth the travel in the car.

We last visited Kidstown around 12 months ago, and had a fabulous time.  So with Annie a little older, and Jack a little more able to cope with the environment, this visit was set to be a blast!

And so it was!!

Here are some of the many photos we took:

The kids climbing the many steps to get to the top of the slides.

Jack preparing for the slide.

To start with Jack was a bit nervous - Steve and Annie are waiting at the bottom to catch him (going down on his tummy this time).

These slides are great for grown ups too!

Jack and Annie on the ‘bumpy’ slide.

Annie on her own… taking it slowly to start with…

But then it gets too exciting and she just has to go fast!!!

Jack on the ‘tractor’.

Finding our way through the maze!

We had such a wonderful time - we haven’t laughed and played together like we did at Kidstown for such a long time!!  It reminded us of what we need to do more of!

So when the time came to climb back into the car and drive home, we had 2 very weary, but very happy kids… actually make that 4 happy kids… parents get to be kids at places like this too!!

I pulled my car to a stop at the side of the street, and I glanced quickly out towards the road before I opened my door.  The traffic was heavy; cars everywhere, young people on bikes, and buses moving out quickly with the end of school rush.

A quick hand over was all that was needed - a few brief words as I took the bag, along with the drink bottle that had fallen from the bag’s side pocket.

“Any news?” I asked Steve, as I attempted a kiss on Jack’s head.

“Nothing to report… not ready to talk yet,” was the answer I got as the head below me ducked and looked out toward the distance.

A few more brief words and Steve was in his car and driving away, rushing to a meeting.

I looked down beside me to realise that Jack was gone, and as my eyes searched the foot path, I noticed a figure standing some distance away… at the edge of the nearby parkland, staring into the trees and head tilted - as though listening.

He had found the quiet… he had found the calm… he had found the ’sanctuary’ in the middle of all the noise and movement around us.

As I called to him he slowly turned.  He looked quietly towards me, not responding, but just listening… though not to my voice, it seemed, but to the distant wildlife.

And at that moment the world seemed to ’still’… he had found that moment, and he had recognised the beauty of what was in front of us that no one else around us could see at that moment.

Then a minute later his eyes focussed on me and he called “I hope a train doesn’t come past Mum”, and he ran towards the car and climbed in.

I smiled to myself and climbed into the drivers seat.

I felt blessed.  And after a long day, in that moment, I felt alive.

After juggling the drop offs between Steve and I this morning, I spent the day at work (relief teaching at the secondary school where I once taught full time) and ended up having lunch with one of the teachers assistants (aides).  I hadn’t met her before, but when she discovered I had an autistic son we chatted for a long time, with her asking lots of questions about life with Jack.  I think she really liked getting a parent’s perspective on a lot of things, and she was really interested in knowing how I handled life in general.  I was pleased in the fact that she had a very positive outlook on our discussion, and felt that the more people who knew about autism, the better.  We discussed the fact that people really needed to be aware of autism, and be able to learn about it in order for it to become more accepted and less judged.  Ahhh, a breath of fresh air… to have a conversation such as this out of a therapists office and away from our blog was really quite uplifting.

On a different note, Jack has recently reverted to the need for having something in his mouth constantly.  He chews on his toys (or anything else that he picks up ) and we have been trying to explain to him that not everything is appropriate for chewing.  His response to this is always “but I just need to chew it”!  So I’m wondering if anyone has any suggestions for a chew toy of some sort… preferably something that is age appropriate, that he could keep in his pocket or on a key ring.  We’d really like to be able to replace the chewing of toys and things like coins before he accidently swallows something he shouldn’t!

And Jack’s week at school?  Pretty good!  Despite the few issues that we’re working with him on at the moment, things seem to be progressing well.  One day at a time…