Day 27. Autism Awareness month continues …

Today I thought I’d simply post a clip of the boys sharing with you their much adored mini-figures! There was much hilarity in the creation of this short clip – I could make the BEST out-takes clip. As you will see, James is back to his happy, flappy self. And together they are both sweet and incredibly mischievous. I adore them. Enjoy xxx

Day 22. The journey continues …

Day 22. The journey continues ….

Have you ever heard the saying, “If you know one person with Autism, you know one person with Autism”? It is very appropriate! I have interacted with and worked with hundreds of kids on the Autistic spectrum and no two of them look alike. Each child has a completely unique profile of needs and of course, their own unique personalities.

I believe in the neuroplasticity of the brain. I believe that we can retrain the brain and encourage other pathways. When James was a small child he had to be explicitly taught many things – hugging was one of them. It didn’t come naturally to him but he learnt through repetitious and gentle modelling. And now I believe he enjoys a hug almost as much as the person who’s receiving the hug from him. It’s not that he lacks affection, he just needed to be taught the process.

Not all people with Autism present like “Rain Man” or Dr House or even Sheldon from the Big Bang Theory (and don’t we all love him!) Each person on the spectrum is unique. Some children prefer their own company. These are the kids who sit by themselves at lunchtime and absorb themselves in a fantastic novel. Some children really enjoy social interactions but may just be a bit unsure how to negotiate the process. Some children might struggle to show emotion but that doesn’t mean they don’t feel emotion – they just haven’t learnt how to express it appropriately.

Have you ever heard that children with Autism lack empathy? I actually think that some children with ASD are super empathetic – they feel things very strongly – sadness in others, anger in others etc. Some children need to be taught empathy. James hates it when other people cry, especially little children. If his younger cousins hurt themselves, he will pick them up, cuddle them and deposit them to the nearest adult for help.

I’ve attached a video again today. This video is of James and Thomas waking up their cousin, Cormac from a sleep. In Tom’s Kindy year, my youngest sister Joanna (whom the boys call JoJo) looked after Tom one day a week. Tom adored this time with JoJo and Cormac. This video shows James’ ability to care for a younger child – to show affection and empathy, and it shows Tom’s ability to be the comedy relief when some distraction was required. I love this video! Thanks JoJo for allowing me to share it xxx

Day 18. Autism Awareness month continues …

April 18th. The journey continues …

There have been many moments I have thought I might go insane … or perhaps I am already insane and others have forgotten to let me know!

Water bottles. The germaphobe, the temperature nazi and the control freak! Last weekend all three boys were seated at the breakfast bar having a snack. Thomas requested his water bottle. I retrieved it from the fridge. He immediately asked a million germ related questions. “Mum, did you use my water bottle? Did anyone use it? Do you think we should just wash it again? Maybe I need a new water bottle.” James then requested his water bottle. “Mum, this water isn’t cold. I can’t drink warm water. Could you put ice in it? It makes me vomit when the water is warm!” Chris then requested his water bottle. “Love – this is the water bottle I use at night time not the one I use during the day!” I mean seriously!!!

Going to bed. When we put the boys to bed they both have these little rituals which must be followed. We have dinner first. Always. Then we have a bath. Every day. Then we choose a show to watch on TV together as a family – at the moment it’s “Tom and Jerry” cartoons. Then Chris takes Thomas to bed and I take James to bed. I have to be the last person to kiss Thomas goodnight. Chris has to be the one who reads to James. James always has instructions about what colour his light is (he has an LED globe that changes colour), how far open his door is, how many blankets he has on etc. Thomas likes to review what is going to happen the next day or more often, what’s happening in one week’s time. Then he needs to ensure he knows how many ‘sleeps’ it will be until that event is going to happen. Then we have to chat about what he needs to do and say at this event.

This afternoon James put on a Harry Potter robe which I recently bought for him. The boys love dress ups. For some reason, the fact that the robe didn’t zip up or button up really offended him. He was screaming and crying about needing to get sticky tape to close the cape up. He was really distressed. I simply kept repeating that the robe wasn’t meant to be closed and that Harry Potter’s robe didn’t close either. This went on and on – probably for 45 minutes.

At different points the boys have had different obsessional or repetitive behaviours. The one that nearly drove me over the edge was James’ counting! He would count up from zero as high as he could go but if he struggled at the end of every 10 and I had to help him, he would fall apart and then have to start from zero again!! Argh! Then we finally conquered that so he developed a new obsession… counting backwards!!! I honestly nearly went insane.

Eating. James likes his toast and sandwiches without crust. He also prefers that his sandwiches are cut into exact squares – sometimes rectangles are OK. If the toast is burnt that is not OK. Bread or toast must be the same, consistent colour – no brown bits. He doesn’t like to have different foods touching one another on his plate. We often use those tupperware dividers because it’s easier. James needs chewing gum regularly. It’s either that or chew his clothing, or gnaw non food objects such as remotes and tooth brushes. There is nothing in our home that doesn’t have teeth marks on it.

In class, he uses a fit ball for when he requires movement. He uses a mini tramp for sensory input and organisation. He has regular physical activity breaks and chews gum throughout the day to reduce chewing behaviours. James also uses weighted products – a lap blanket and a scarf – it helps to calm him. James uses ‘break’ cards for when he needs a break in class. This is to help him learn to self regulate and identify when he needs some down time to calm himself.

When I use any noisy equipment in my home I need to give both boys the heads up. Thomas dislikes loud noises and does find them distressing but not to the same extent as James. When I warn James, he will sometimes be able to tolerate it to a degree. He might block his ears and then go to another room and shut the door. Other times though he will run shrieking to the farthest room and hide under the bed with a pillow over his head. He likes to vaccuum but can’t tolerate the noise. So he does the vaccuuming wearing industrial headphones. Quite a sight!!!

Many people would say – just don’t entertain it! Just change the routine! Just refuse to indulge them! They are doing it for attention! They are controlling you! Why does they need all this extra stuff at school and in class? Do they really need it? Why don’t you just tell them that’s all there is to eat and refuse to give them anything else? I double dare those people to come over to my house and give these theories a try!!!! It just isn’t that simple. If I want to change a routine or habit, it takes up to two weeks to do it slowly and carefully. If I did change it up, the result would be massive meltdowns and huge amounts of stress that would in the end simply upset all of us and prevent the boys from sleeping well. With autism it’s just not that simple!

I’ve attached a video of James. There is no image, just audio because it was a meltdown which occurred during a shower. This meltdown occurred because I had to take him out somewhere at night (I think it was a school event) and I needed him to shower beforehand because he’d been swimming. Basically he got completely overloaded and overwhelmed because I changed the routine. He was shrieking about not wanting to be wet and blaming me for his discomfort. I am trying to wash his hair, get him clean and get him out as quickly as possible … oh, and “trying” to remain calm! I chose to share this because I’d like others to understand the implications of changing routines or expectations at the last minute. It’s not as simple as “just don’t entertain it!” … it really isn’t!