Autism Acceptance 2018

Autism acceptance month is here. I don’t enjoy the politics of this time of year but I think the information below is worth sharing.

Autism Speaks is the organization that started the “Light it up Blue for Autism” campaign. Sadly, they are an organization that believes that Autism is a disease that needs to be “fixed”. Most of their funding goes into research aimed at an Autism cure and little of their money goes to families. Autistic people are not represented on the Board of Autism Speaks. Their logo is a puzzle piece – autistic individuals are people, not puzzle pieces. The colour blue is representative of the thinking that Autism is a “male brain” condition – a theory that has been disproven. There may still be boys diagnosed with autism than girls, but that is largely due to the diagnostic criteria being written for boys and due to a lack of education about girls with autism.

Autism acceptance month is here again. We need to treat autistic people with respect, listen to what they have to say about themselves, and make them welcome in the world. Neurodiversity is spectacular! 💗

Executive Functioning

Executive function is like the CEO of the brain. EF helps you initiate, plan, organize and complete tasks. Below are a few great, simple graphics to support students with EF concerns. These children may be reluctant to ask for help and may be easily frustrated. Teaching children how to ask for help is a great place to start. 
I hope you find a few simple, practical ideas below. It’s always worth sharing this kind of information with students, parents, teachers and families. We are all in this together – understanding our children is key in helping them reach their full potential.

Ice, Ice Baby!

Would you like to know what the highest frequency word in our house is? It’s ice! Would you like to know the definition of a complete household disaster in my home? Running out of ice! It’s all about ice at our house with the degree of fervour that only someone with an ASD mind could commit to.

Ever since J was a tiny boy he was obsessed with ice. In the car before school every day you will hear – “Icy drink after school, Mum?” Via iMessage during the day – “Fro-co (frozen coke for you iced drinks amateurs!) after school, Mum?” Just before lights out every night – “Ice when you come in? Pretty please with a cherry on top?” I even send ice to school with him in a double insulated thermos!

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Of all the iMessages I’ve received from J, I can honestly say that at least 90% of them are ice themed. Recently J and I discussed how I would love it if he sent me some iMessages that enquired about how my day was going rather than just asking about when his next ice fix might be. He seemed to take this on board. The next iMessage he sent said – “Hi Mum. Sorry you’re working today. When you get home I’m going to give you a big cuddle”. I was so delighted with this text that I immediately began to message him back to thank him. Just as I pressed “send”, another message arrived from him – “Fro-co Mum? Pretty please with a cherry on top?” Well … it was a start!

We have tried a myriad of approaches to help J to achieve ice-finding independence. He lacks the motor skills to twist the ice out of ice trays and if we take them out of the trays and put them in a bucket in the freezer, they tend to stick together which is an issue for J. A lovely friend gifted us with an ice making machine which is fabulous, but again J is unable to use it independently (he hates the noise of it!) and it does require a degree of organisation which is problematic in the context of a work day.

So really, there’s only one solution as I see it. Whilst other girls dream of things like handbags, perfume and pretty frocks, I’m dreaming about a big arse 680L French Door fridge WITH a built in ice dispenser capable of storing up to 1.3kg of ice at a time! Oh glorious, non-stop ice that J can source independently whenever he likes. It will eventually be mine and it will be “freezing” awesome!


Inclusion and Diversity.

In years past, I have extensively blogged through the month of April (Autism awareness month) in the hope that sharing our journey would encourage understanding and acceptance of Autism beyond our family unit.  As I read over my posts from the last few years, the journey we have been on takes shape.

I started blogging with a genuine need to want to educate those around us about Autism.  Over time, this then evolved into a want to promote acceptance and understanding.  Today, I am at yet another stage of the journey.  Now my focus is on celebrating diversity – celebrating all of our spectacular differences.   It is not just about Autism now – it’s about creating a culture of inclusion in all contexts, in all age groups, for everyone.

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Our differences are the one thing we all have in common. It is not our differences that divide us or make others feel excluded – it’s our failure to accept, encourage and celebrate diversity that causes division.  We all have vulnerabilities and each of us will experience feeling different, separate, not a part of things at same stage or another.  It all depends on the context – the people, the situation, the environment.  We need to draw on these experiences and use them to ensure that we live inclusion every day, in every context and that we model this for others, especially for our children.

“Always remember that you are absolutely unique.  Just like everyone else!” (Margaret Mead)

inclusion quote

Day #2 Meltdowns vs tantrums

A question that often comes up for me as a teacher and also as a parent, relates to meltdowns. What are meltdowns? How can you identify a meltdown? How can you help when a child is in meltdown? Firstly, we need to establish that meltdowns are not tantrums.

Tantrums normally occur as a result of a child not getting what they want. Tantrums are about the child wanting to obtain some kind of goal/object/need. The child tends to maintain an awareness of the world around them, often looking for the reactions of their carer. Tantrums are generally over with reasonably quickly and although the child is clearly upset, they are still in control of themselves and their personal safety.

Meltdowns are hard to define but very simply, they are a loss of behavioural control generally due to fatigue, sensory overload (flicking lights, crowds, excess noise, temperature), excessive demands, stress or environmental factors (change to routine). Meltdowns are experienced by most individuals with autism. During a meltdown a child loses control entirely. They are in survival mode – in fight or flight. They may not necessarily keep themselves safe, they may even hurt themselves and it may take some minutes to hours for them to calm down. They are not in control of themselves or their emotions. It is completely overwhelming for them.

tantrum versus meltdown

As a parent it’s really heartbreaking when your child is having a meltdown and despite your every effort, you just can’t seem to help them, you just don’t know what to do. This often makes some parents feel frustrated and helpless. Remember that a child in fight flight will not respond to reason, or rewards, or threats – they cannot be controlled. You should not approach them with anger, you should resist eye contact, you should cease excessive talking, you should not place demands upon them or attempt to restrain them. All these things are behaviours that serve a purpose for you, not for the child who is in meltdown.

When your child has a meltdown sometimes all you can do is just sit beside them, and offer a hug (rarely accepted in my house) and some words of comfort. Sometimes it’s best to just close the door and walk away, allowing your child the time and space to calm down in their own time and in their own way I still really struggle with this because every fibre of my being as a mother wants to help – to nurture, to hug, to heal. I have had to learn that what’s important is what the boys need in this situation and as hard as it is for me, this often involves removing myself from the situation.

The best way to deal with meltdowns and hopefully prevent them is to talk to your child. Ask them what they need from you? How can you help them? Perhaps you could establish a routine – a default process that you commence when a meltdown is imminent? If you are all on the same page and you’ve practised this routine whilst everyone is calm, it can really take the pressure off when emotions are heightened and the circumstances are stressful. Try to identify the things that trigger meltdowns and where possible, try to avoid these or implement strategies that might divert a meltdown from happening. When it’s not possible to avoid these stressors, talk about your plan for managing meltdowns and practise it.

If a meltdown is likely there are a few strategies you might try to divert the meltdown:-

  • Use a calming sensory item such as a weighted blanket
  • Massage or deep pressure input
  • Allow the child to retreat to a small, safe place (pop up tent, cupboard at home, under bed)
  • Take a warm bath
  • Use aromatherapy (lavender and chamomile are calming scents)
  • Create and use a word or phrase so the child can alert an adult to a possible meltdown
  • wear headphones when in crowds
  • listen to music or use relaxation/breathing techniques to calm

Meltdowns are really tough for the child and they are also a challenge for those who care for them. It’s important to remember though that the child’s meltdown is not about misbehaviour or acting out or being difficult. A meltdown is a sign that your child is having a really hard time. Making the time to talk with your child and developing some strategies and plans in advance can really help to ensure everyone comes through the storm safely and with their needs having been met.

meltdown judy endow

Day #29. Fussy eating and supplements.

Feeding children is a thankless task for most parents.  During the toddler years many parents express frustration at their child’s restricted dietary choices and fussy tendencies.  Food and feeding issues come with the territory where Autism is concerned.  Many children on the spectrum have sensory aversions with food – so that the smell, texture, consistency or even the colour of the food causes them offence and stress.  Many children on the spectrum suffer from Gastro Oesophageal Reflux Disease (GORD) and a high proportion suffers from food sensitivities such as gluten, dairy, salicylate or amine sensitivities.  Coupled with this, a high number of children on the spectrum also suffer from recurrent ear infections, often requiring grommets and adenoid removal procedures.  As you can imagine, these things impact on eating, feeding.  Children on the spectrum tend not to enjoy new experiences – food is no different.  Feeding a child with ASD is an exhausting, lifelong issue.

J is a particularly fussy eater.  He prefers that none of his food touches – he likes everything separated with no blending of textures or tastes. He is not a fan of meat and as a result his iron levels are often low. He has a very limited variety of foods and experiences a lot of anxiety in and around food.   I have consulted dieticians and nutritionists; I’ve sought Paediatric help and have explored Natural Therapies in an attempt to help J with his issues with food.  You know what?  It all just leaves you feeling even more frustrated.  If I did what other parents sometimes do and just insist that J eat what’s on his plate or eat nothing at all, he would much prefer to starve and would simply just sit it out.  His aversion is that strong.  When he tries something new – even just placing it into his mouth and spitting it out – up to the point when the food is in his mouth the stress upon him is enormous.  Often he is crying (even when he really wants to try it!) and once the food is in his mouth he is gagging, sometimes vomiting.  It’s distressing to him and to us!

Due to J’s fussy eating habits and also for a range of other health concerns, I’ve read a lot about the gut.  We have all now learnt that the gut is like the second brain.  We also know that individuals on the spectrum have entirely different ecosystems in the gut than the general population.  They are vulnerable to antibiotics and are often sensitive to gluten and dairy, unable to properly digest the proteins in these products.  I use supplements to manage the boys’ GORD, digestive/bowel issues and general health.  I swear by probiotics (helps move food through the gut, helps IBS and other bowel concerns, helps skin conditions) and supplementing with magnesium (relaxes muscles, helps with headaches, helps digestion/bowels, can reduce anxiety), Omega 3’s (anxiety and inattention, concentration) and also giving the boys a quality multivitamin.  The boys also bath in Epsom Salts (rich in magnesium, reduces stress, relaxes muscles, helps body to eliminate toxins, helps constipation), essential oils and coconut oil.  The boys love their bath time and often have a bath before school or during the day if they are feeling anxious or uptight.

We still have a long way to go in terms of J’s eating and general health.  I’ve learnt that I just have to relax a bit on this issue.  All I can do is monitor J’s vitamin and mineral levels; monitor his general health; supplement where necessary; encourage him to eat as well as he can with the limited choices he has; offer him opportunities to extend his eating vocabulary; and praise him when he tries/accepts something new.  We’ve always had greater success introducing new foods in a relaxed environment, outside of meal times and without any pressure being applied.  Over time we have added a few foods into his eating repertoire which is such a triumphant feeling. It’s going to be a lifelong challenge but we can make it less stressful for everybody by just taking things one day at a time.

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