Managing Autism - A Personal View

Oh my goodness… oh my goodness!!!

We’re holding our breath…..

Someone please pick the significance of this moment!!!

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

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!

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…

With the weather getting hotter, and the kids hair getting longer…. today it was time for a visit to the hairdresser…

Haircuts have never been an easy experience for Jack….. okay, to be honest, for a very long time they were a complete nightmare.  Our haircut preparation used to be incredibly focused and there was no room for error - the sanity of the hairdresser and anyone else within distance of hearing ear piercing screams was always at risk.

Often, all it would take was simply a mention of the hairdresser and Jack would start with his intense head rubbing and sobbing.  Bribery would be our only way to coax him into the chair, and someone would have to hold his head whilst simultaneously feeding him an ongoing supply of chocolate frogs - all this whilst the hairdresser worked as fast as she could, trying to keep the sensory irritation to an absolute minimum.

We could never work out the reason as to why Jack hated haircuts so much… of course, post ASD diagnosis and it makes sense, but back then we had no idea as to why we were being thrown into a world of chaos over a haircut.

However, over the past 12 months, our haircut experiences have become somewhat more ‘mellow’.  We can’t work out why this is so, the only thing being is that he now has a family friend (who is a hairdresser) cut his hair… perhaps he feels a little safer, or perhaps he has simply grown through a difficult patch.

But regardless of why, he will now sit for a period of time in order to have his hair cut - yes he still gets a little agitated every now and again… he still jiggles his head or legs at times… but we no longer have the screaming, and we no longer have the fighting to get out of the chair… (we still have to provide him with an ongoing source of food to keep him from whining, but hey - this is totally manageable!!!).

So our trip to the hairdresser today was a success… well, for Jack anyway… and Annie you ask?… well that’s a different story (I’ll tell you about it when I get my hearing back!).

Oh, and if anyone has tips for surviving a haircut, please share!!

Late yesterday afternoon we decided that it was time for a family activity - the kids were quite wound up and needed some focus.

Steve and I looked at the board games and card games, trying to decide what would be best to keep both kids focused and on task when I remembered the bubble mixture that I had bought a number of weeks ago, and had put away in the cupboard.

It is common for people with autism spectrum disorders to have sensory processing difficulties (relating to such things as touch, sight, smell, hearing etc.) as is the case for Jack.  He has a number of difficulties relating to the tactile senses - for example, he has issues with wearing socks and shoes and clothing, and doesn’t like gentle touch (preferring pressure).

With Jack preferring ‘pressured’ touch, the concept of ‘gentle’ has always been difficult to explain to him.  But recently we have used bubble blowing to help us teach the kids (especially Jack) the concept of ‘gentle’ (having to blow gently to make the bubbles, and how the bubbles move gently, and how they touch things gently).

Bubbles have always drawn our kids in - they love the look and the feel of them, how they move and ‘pop’, and how they seem to magically appear and disappear.

So with some sensory play in mind, bubble blowing it would be - I got the mixture out whilst Steve rounded up the kids and herded them outside.

The bubble blowing was a real hit, as it always is, and even though we lost more than half the mixture from being knocked over on the ground (this is pretty normal) the kids had a wonderful time.

At one point in time we had to stop the activity when Jack, curious about the taste and texture on his mouth, tried to eat the bubbles.  He has never done this before, so it came as a bit of a suprise to us, but after we talked about why it’s better not to eat the bubbles, he went back to just catching them again.  (I’ve made a note to try and find a mixture or a recipe for bubbles that is safe if swallowed!)

Activities like this are always good fun - and after yesterday, we reminded ourselves that we should do them more often!

Elissa

Jack’s favourite place (other than in front of the Playstation) would have to be in the garden.  As do many children with an Autism Spectrum Disorder, Jack has sensory likes and dislikes, and it has been important to us to provide spaces where he (and Annie) would feel really comfortable.  Over a number of years we have worked on creating a ’sensory playground’ for the kids.  And we have also created spaces that would provide opportunites to develop motor skills, as well as let off energy and be heaps of fun!

So we thought we’d share with you a little of ‘Jack’s Place’…..

This is Jack’s ‘running track’, his place to throw and kick balls, and his place to just ‘be him’.  Jack likes having wide open space around him (which is quite ironic considering one of the issues we are dealing with at the moment is recognising other people’s need for personal space).  This is the area where Jack can move freely - he most often runs here (we do laps every afternoon) but rolling around on the ground is also a favourite activity.  Jack loves the feel of grass under his feet, so this is the perfect place for lots of games.

This is a place where Jack goes to hide from the world.  If things get too much for him, or he wants a quiet place to sit, this is often where we will find him (sometimes curled up with the cat).

The play equipment in the ‘kids space’ has been wonderful for Jack.  It has helped him learn and experience climbing, balance and motion (there is also the trampoline and swing set that get a constant workout).

And we are very lucky for Gran and Pa’s contributions to the playground area!

These butterflies have a special place in the ‘kids garden’.  Both kids love to sit and watch the wings flap in the breeze - and if the wind isn’t blowing, they pick them up and flutter them around themselves.  This can be a really calming activity.

This is Jack’s strawberry bush.  Over time Jack has shown a real interest in the practical side of gardening.  He loves digging his hands in the dirt, and looking for worms and bugs in the soil (we’ve found this can keep him entertained for hours!!!).  So the strawberry bush is his contribution to the garden, and he waters it and looks after it all by himself.

This photo shows some of Jack’s favourite textures in the garden.  As we’ve already mentioned, Jack loves the feeling of grass under his feet, but he also loves the texture of the tiny little pebbles on the paths, and the bark chips which lie under the play equipment.

This last photo shows one of Jack’s favourite places to sit and ponder life.  He sits himself on the rocks and plays with his plastic frogs in the bird bath.  He really loves the water play, and again this activity can keep him entertained for a long time.  He tips and pours and squirts the water - it’s a very relaxing place for him to be.

So that’s it for the tour of Jack’s favourite place!  We’d love to hear of others’ favourite sensory spaces to be…

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!

In a previous post, Jack’s feet and socks were the topic of discussion.  In this post his feet once again are the topic but this time from a different angle.

Jack, like many children with autism, has regular ‘meltdowns’ usually in response to something, or a variety of things, in his environment.  We can often sense a ‘meltdown’ looming, with Jack becoming more and more agitated.  His hyperactivity increases and he has a tendency to go totally within himself (you can talk to him but he won’t hear you or make eye contact) just before he boils over.  Jack’s meltdowns usually consist of him screaming, moaning, swearing, kicking, hitting, head butting and banging, rolling around on the ground and his body overheating.

As much as we try to avoid a meltdown occuring by redirecting him and removing or altering ’stimulants’ as best we can, there is often little we can do once he reaches a certain point within himself.  We can literally see his eyes roll back in his head sometimes and his whole body seems to take over the mind.  At this point we find it is best to ‘ride out the storm’, simply letting him move through the tantrum and aggravation.  His body eventually reaches the point of exhaustion and he becomes calm (but very tired).

Through talking with Jack during the period of calm after a ‘meltdown’ we have discovered the final moments of the tantrum can be quite scary for him.  He reports being unable to breathe properly, as well as the feeling of his body burning.  We used to hold him quite tightly during these tantrums, hugging his body to us, in order to protect ourselves from lashing arms and legs and to protect him from hurting himself against walls and furniture - damage control.  However this seemed to only exascerbate his feelings of not being able to breathe.

One day, purely in an effort to protect myself from being kicked, I (Elissa) grabbed his feet and held them tight.  He complained and continued to try and kick for a few moments but then I started to sing to him and his body almost melted into total peacefulness.  He lay motionless (though still twirling his hands every now and again) for about 10 minutes, with me holding his feet and repeatedly singing ‘Jack’s song’ (more about the song another time).

From then on ‘feet holding’ has become a regular request of Jack’s.  It doesn’t always work at the time of a meltdown, but it is very comforting to him sometimes when things become too overwhelming, or when he is having trouble sleeping.  Someone once told us that by holding his feet we are helping him to feel more grounded.  We don’t know if that is what it is, or if it’s simply the constant firm pressure on an area of his body where he usually has problematic sensory issues.  But regardless of why, feet holding is something that can give Jack a feeling of calm, and that’s good news for us.

This post is a simplified version of our daily discussion on socks - according to Jack (and interpreted and written by Mum).

The problem with socks is that they itch, and scratch my heels and tickle my toes.

The problem with socks is that they stick, like glue to my feet, they just don’t let go!

The problem with socks is that they twist and turn and pull all over my feet,

The problem with socks is that they burn, my skin how it hurts, it’s so hot with the heat!

So why wear socks?

Well… I don’t, and the problem is fixed.