On the road to school

I just had a meeting with an itinerant support teacher for early intervention (did you know they exist?) My meeting was concerning the options for E next year as he begins school. At this stage we are looking at Department of Education options. 

She was lovely and helpful and nice to know there is someone you can email or ring with logistical questions regarding the placement of kids with additional needs in schools. She will also be a bit of a liaison between me and my local school. 

I have been informed from a few different sources that because E has a diagnosis of autism he will qualify for additional state funding. Ain't necessarily so, folks. If your child has a mild developmental delay or in E's case a severe language and communication delay - then they do not qualify for additional funding. Any support/aid that the school can offer comes out of what is already allocated to the school. 

So my understanding is that E will receive very little extra support at school. 

This is very hard to hear. My child does not need to be in a special school or a support class. In fact, these will most likely be detrimental to his learning ( learning behaviours of other children etc). But I know he will be completely lost in a classroom. He will struggle to follow the first instruction, let alone the second or the third. He may not be intellectually disabled but his lack of comprehension skills will probably end up producing a similar outcome. If one does not understand what is being said, then they cannot perform the tasks. Why does this not qualify for funding for support?????

Helpful resources part 1

I will pause from the information overload for this post and draw your attention to resources that have been helpful to me or have come highly recommended.

Gen Jereb: 'There's a Traffic Jam in my Brain.' 

This has been one of the most informative and helpful courses I have done. The course is 7 modules (approx 7 hours) and is available online throughout the month of October. You can watch the videos when you are able. The cost is approx $170 but I think it was money well spent. (My husband also watched it with me)

What did I like so much?

• There was heaps of information regarding how our bodies and nervous system function and what their needs are.
• There was wide application - not just for kids with autism - but many kids would benefit. It was useful for teachers, parents and therapists.
• She is an engaging speaker
• The songs were a bit daggy but fun.
• She clearly LOVES what she does and has heaps of experience in the US and Australia
• Lots of practical applications.

You can see a 10min snippet of her here.

'The Out of Sync Child' by Carol Kranowitz is on my reading list and comes highly recommended. It looks at the issues of sensory processing disorder and how we can help our children organise sensory information.

'No more meltdowns' by Jed Baker is a helpful book written to help you examine the causes behind behaviour. Finding the causes of behaviour will help you prevent the behaviours in the future. I have read parts of this and found it quite practical.



Sue Larkey
Sue Larkey is a primary school teacher and a special education teacher. She has a wealth of resources, information and experiences. Her website is a great source for resources for both school and home. She also organises workshops across the country with the expert Dr Tony Attwood. I have attended one of these workshops and it was well worth my time.


Lifestart
This group is an early intervention service for ALL kids with additional needs (not just ASD) which we have only become members of this year. In some ways I wish we had used their services earlier - but you can't do everything!! They have a number of centres around Sydney and are an incredible family friendly and accessible service. They offer group therapy with individual plans and sometimes one on one therapy. They offer services in your home to help with behaviour management. They offer open and supported playgroups to kids with disabilities They offer ongoing workshops and courses. Their support is wonderful and offer many opportunities to connect with other families. We have our son enrolled in their transition to school program (which runs all year!!) and are thrilled at what they are offering.
At a small cost of $275 per term this is a wonderful service and comes highly recommended. (Remembering one 1 hour session of therapy will typically cost $120 or more).
If other people are looking for services to support or donate I would love you to donate to these guys!

Preventing the Meltdown: A Sensory Diet

Please read my previous post to make sense of this one!!

In my last post I mentioned that a sensory diet was an important intervention strategy for kids having difficulty regulating their arousal levels.

It is termed a sensory diet as the intervention is of the sensory nature (the senses) and a diet because like eating, it needs to happen throughout the day at regular intervals to be most effective.

Disclaimer: I have been terrible at implementing any kind of consistent sensory diet with my child. Doing anything consistent with 3 young boys is a weakness of mine. So I cannot claim great success with this intervention but I have seen some benefits even when it is used inconsistently!

It's purpose:
The purpose of a sensory diet is to stimulate the nervous system which regulates (raises or lowers) the arousal levels in a child. It helps stabilise the emotions of the child and in turn hopefully prevent a meltdown. This of course is beneficial to the child and all those around the child.

Source: Sensational Kids OT

Important:
Creating a sensory diet is a uniquely personalised intervention. Every child is different. Their needs are different. Some children have naturally high arousal levels and some children have naturally low and sluggish arousal levels. Every child will respond differently to different sensory input. What might work for one child will not necessarily work for another. Please if you think your child would benefit from this type of intervention, then you need to see a good Occupational Therapist. I do not claim to be any expert on this topic. I am only sharing what I have learnt through experiences, conferences and courses over the last 2.5years.

How does it work?
The nervous system is a complicated beast and I don't pretend to understand even the basics of it. See the SPD website for some more in depth information. Kids with ASD or SPD (sensory processing disorder) often have proprioceptive and vestibular disfunction or weaknesses.These have to do with the use and awareness of our muscles and balance and spatial orientation. They are fundamental to childhood development and if not developed properly will effect higher order skills such as fine motor, concentration and even vision.

Activities in a sensory diet can have a two fold effect. Firstly, they will have an immediate effect on arousal levels and help a child regulate these levels throughout the day. A good OT will see the bigger picture and put in place activities which will not only affect the child's day by day functioning but will develop and correct issues with the procprioceptive or vestibular systems and therefore having a longer term effect.

What types of activities could be involved:

• Blowing bubbles, whistles, harmonicas (deep breathing is very significant for regulating levels)
• Crawling like a snake or on all fours
• Jumping on a tramp or off lounges (yep, perfectly acceptable in our house)
• Riding a bike
• Obstacle course type activities - emphasising keeping the child low to the ground
• Listening to music
• Deep pressure like a brush on the skin (there is a particular brush and a particular method for this one)
• Visual toys like liquid timers see here
• Squishy or stretchy toys see here.
• Squashing your child between cushions
• Jumping on your child while they are under a bean bag (carefully!!)
• Weighted blankets or vests

Source: http://www.sensorysmartparent.com/blog/

                           

I have tried a number of these and they do work -but they only work while your child's arousal levels are not too high. Once they reach overload point, these strategies don't work as their system cannot take anymore input until they start to calm down. So the idea is to do a variety of these things (what the child responds to) throughout the day to prevent them from reaching melting point!!

When E starts to get a bit 'edgy' (each child will have their own set of symptoms which show this), if I take the time to do some of these activities with him, they will often stop his arousal levels from escalating.

Other kids can benefit too!
Lots of these activities can be beneficial to all children, not just children on the spectrum. Kids often have trouble regulating their emotions and arousal levels. So particularly, if you are a teacher, working with children or a parent, doing some of these 'fun' activities with all the kids will probably help all of them calm down, focus and concentrate better for the tasks at hand. 

The Meltdown

'Arousal is a physiological and psychological state
of being awake or reactive to stimuli.'

Source: http://en.wikipedia.org/wiki/Arousal

Our bodies naturally go through different states and levels of arousal. When we are sleepy and tired our bodies are in a low state of arousal. When we are stressed, anxious or incredibly excited our bodies are in a high state of arousal. We perform best when we are at a moderate/medium level of arousal

Source: http://www.eoslifework.co.uk/gturmap.htm


Most of us have in built capabilities of self-regulating. That is, if our arousal levels are low, we can do things increase them. If they are too high, we can decrease them. Sometimes we make conscious efforts to regulate... if we are feeling sleepy when we are driving we might put water on our face to stay awake. If we feel stressed, we might have a bath or drink a cup of tea to relax. However, our bodies also naturally self regulate in an unconscious way. This helps us to moderate our emotions and perform certain tasks at optimum arousal levels.

Children with autism do not have the same capacity to self regulate. When a situation causes them stress or anxiety their arousal levels rise.  Most of us after being slightly stressed would naturally decrease our arousal levels to a moderate state. However, this doesn't happen for kids on the spectrum. Their arousal levels stay heightened. So when they get stressed again (even in a small way), their levels rise again. And again. And again. Let's face it, these kids face a greater number of stressful and anxious situations everyday because they cannot process information/ sensory input in a neuro-typical way ( another blog post). Finally their bodies get to the point where they hit the hyperarousal point/ panic and stress and a MELTDOWN occurs. The meltdown is the body's way of dealing with the sensory overload and thus will eventually lead to a lowering of the arousal levels (this can take hours).

 

These heightened arousal levels are the reason it can seem like the smallest thing which 'sets a kid off' into a meltdown. A small touch on the shoulder. A toy that isn't working properly. Somebody gives them the wrong type of food. It isn't this isolated event which causes the meltdown ( most of the time), it is the accumulation of all the small stressful things that makes them reach the tipping point. Had this child had the capacity to lower their arousal levels after each event then the meltdown would not occur. But sadly, most kids on the spectrum do not naturally have this capability. This is where they need help, intervention and eventually need to learn ways to self regulate themselves. This intervention is known as a sensory diet.

What can you do for a child who is having a meltdown?
To be honest, not a lot. Remember, they have hit the 'hyperarousal' state... the fight or flight zone... they are not using their 'thinking' brain. Logic and other interventions do not typically work as they are in sensory overload and will not cope with any other input.

When my child hits this zone, we need to put him in his room (which he also shares with his two brothers). If he is any other part of the house he will throw things, push furniture over, try to break things and bites furniture. His room is the safest place for him and the rest of the family. There is not much to throw or destroy in there (all the toys are in another room). He will roll around, cry and scream in there. He will push over what he can, pull sheets off the bed. After a certain amount of time, when he has calmed down somewhat, he is open to some sort of intervention to help bring his levels back down. He is still fairly reliant on me as his mother to do this. A cuddle on my lap and strong pats on his back often help. Then I try and introduce another activity which he finds calming (reading his favourite book, doing a puzzle or constructing something).

Activities which give the child a sense of completion are very important for kids on the spectrum. Seeing the 'whole' of something is calming to them. They have a strong sense of accomplishment. I find the 'smart games' series of toys and puzzles really great for this purpose. We have this particular one and often buy through IQ Toys.

 

The meltdown is emotionally and physically exhausting for me as a parent. It's not unusual for me to have a good cry after such an event. It is very difficult for me not to feel anger at E during these times. But it is really significant to remain calm and intervene in this way. When I get angry, it really tears E down. It cuts him deep. It's astounding no matter how I much I understand that he is not choosing this behaviour, I still find it so hard to moderate my emotions. If it's hard for me, what must it be like for him?



Fight or Flight

It's winter. It's dark. It's night. You are on your own. Walking. You hear footsteps behind you. Someone is following you, inching closer and closer. They grab you from behind....

You turn around calmly and politely say 'Excuse me, I don't appreciate your touching me like that. Can you please keep your distance?'

Is that what happens? No! In fact, in that situation a calm response like that is almost impossible. You feel fear. You feel stress. You feel anxiety. Your heart is beating out of your chest. You are sweating in the bitter cold.

What do you do? You run if you can or you turn around and punch, kick and scream. You feel threatened.

The whole scenario might be perfectly innocent. Maybe this person just wants directions. Maybe this person thought you were in danger of someone/thing else. Maybe this person is your best friend. But that doesn't matter.

Your arousal levels are through the roof. Your instincts kick in to overdrive. You don't think logically. You response is one of fight or flight.

This response is an in-built method of self protection, it enables us to flee from threatening situations. Animals have this instinct and when humans enter a 'hyperarousal' state, this response is also just as instinctive.

These responses come from the amygdala (a-mig-dal-a) a small part of our brain.

Source: http://en.wikipedia.org/wiki/Amygdala_hijack

The amygdala plays a role in memory function and one of its roles is to identify if there is a potentially threatening situation. If the amygdala is triggered then it 'hijacks' the rational/thinking part of the brain and releases stress hormones including adrenalin. This is what produces the primitive and instinctive response. You act first and think and ask questions later.

This is all very interesting, but what has it got to do with autism?

Would it interest you to know that recent studies have shown that children with autism have an enlarged amygdala.

What does this mean for that child? It certainly has an impact on social function. It could likely mean increased anxiety and stress and the likelihood of perceiving threats where the rest of us don't see them.

Often when children with autism hit or hurt others, they are in this fight or flight response. They cannot process the world as easily as the rest of us and so they find even an easy social setting threatening. Sometimes a sequence of events can lead to a child feeling so threatened that this primitive response is triggered.

Of course, we never want to excuse behaviours that cause harm to others. But instead of accusing the child of being aggressive, we might wonder what must have been going for this child that they felt so threatened? These kids live with incredible levels of anxiety and stress everyday. If your child is ever at the receiving end of a hit from a child with autism, I plead with you - don't push for discipline or punishment for the child. It won't solve a thing. Work with the child to find out why they felt so threatened and how we can reduce this so they can respond with their 'thinking' brain the next time.



World Autism Awareness Day

It's World Autism Awareness Day...

If you don't know why the Opera House will be lit blue tonight - this is why. Symbolic gesture. According to the SMH parents of children with autism will 'feel less alone' tonight then they do on the other 364 nights of the year. Not sure about the truth of that. In fact the comment made me feel a little sick. It's nice to think people are thinking of those with autism. But in the end, what purpose does that serve? Symbolic gesture indeed.

Autism is growing. The number of kids being diagnosed is increasing. It's a bit scary. The reality is your children will be sharing classrooms with children who live with autism. Lighting the Opera House blue - as nice as the gesture is - doesn't really do much to inform people.

So here's my bit for World Autism Day.

My child is 5. He starts school next year. As Term 1 is almost gone, this thought eats away at my insides everyday. What school will he go to? Where will he get the support he needs? How will he make friends? How will he respond when he gets teased for his 'weird' habits? How is he going to understand what is going on in the classroom? Who will take the time to walk with him so he doesn't get completely lost? Where will he turn when he feels overwhelmed? What will he do?

I guess if I felt parents and teachers knew the following things about him, I'd be more at ease:

• My son is quiet and easily missed. Please take the time to make sure he understands what is going on.
• My son has trouble comprehending more than one instruction. Please just one at a time and slowly.
• Comprehension is his real sticking point... don't assume he understands.
• Use visuals. Demonstrate what you want him to do. Once he comprehends he can usually do the task.
• Place the routine in a visual for the whole class to see. I can assure you he won't be the only child that benefits.
• My son loves wearing a hat. He's not being rude -he has no concept of these social mores. Yes, it's falling apart in more ways then you can imagine, but it's his friend. His security. Let this one go. There are bigger fish to fry.
• Despite all that you are told about kids with autism, my son will look at you and he can be quite social. Please don't assume he doesn't have autism because of this.
• Try and include him. He will naturally get left behind. Encourage your kids to include him. If not for his sake, for his mothers'.
• When he gets angry or frustrated please don't take it personally. Even though he might be throwing things at you or trying to bite you. It's a symptom that he is not coping. It's all gotten too much. He can't process what has just happened or the many events leading up to this moment. He is not just being naughty.
• Please let him go to the toilet when he needs to. He is scared of flies and mosquitos. This stops him going until the very last moment till he no longer has a choice.
• Give him opportunities to lead. He is capable. He just needs a chance and some time.
• He can talk!! Don't assume he can't! Encourage him to talk to you. But don't barrage him with twenty questions. If he doesn't understand or respond, don't give up on him. Reframe your question, simplify it and don't get offended if he looks away from you. This isn't about you. Go out of your comfort zone to help him.
• Don't blow up balloons if you want him to feel comfortable and safe.
• Celebrate the victories. He is beginning (at 5) to speak in full sentences. Please don't look at me like I am from another planet when I get excited about this. And yes, I do realise your child was doing this at 2.5.
• The outdoors is a calming environment for him. Trees, grass, flowers, insects, dirt. Please give him time in this space.
• He is a sweet kid and very loveable. Take the time to see this side of him. Build his trust. He will do a lot for someone that he trusts.
• If you need to correct him, please use a calm, kind voice. Use positive language. Negative words and tone tears this child down very easily. Trust is quickly eroded.

All these things are pertinent to my son. A lot of this however, would be relevant to many children with autism. In general, they need our time and patience. We need to work hard at reducing the situations which cause these children stress. Stress causes these children to 'lash out' or behave in uncontrollable or inappropriate ways.

My favourite saying at the moment is 'every behaviour has a cause'. There is a reason for these meltdowns. Let's work together for good of every child. Small changes can make a huge difference.