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The [A] word: [T]ired

Tired of being up all night.

Tired of feeling helpless.

Tired of not feeling good enough.

Tired of feeling like we make no progress.

Tired of being ignored.

Tired of being excluded.

Tired of people staring.

Tired of being treated like we are different.o_dente_de_leao_da_consciencia_do_autismo_deseja_o-r079a3806e36c40388746113b553c5e46_wvw_8byvr_512

Tired of being to comply to society’s expectations.

Tired of being compared to ‘normal’ kids.

Tired of people not understanding.

Tired of screaming.

Tired of trying to make them keep up with society’s latest definition of ‘normal’.

Tired of being stereotyped.

Tired of people who don’t understand Autism.

Tired of people who don’t make an effort to understand Autism.

Tired of people drowning in their ignorance and prejudice.

Tired of the consequences this has on our kids.

Tired of the pity.

Tired of assumption.

Tired of not being heard.

 

You can be tired, but you have to never give up; you can fall, but you have to get up. Make them listen; make them see; make them aware.

We, the families, have only one wish – help us make it reality & learn one new thing about Autism.

 

*Want to make a difference? I know you

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Making routine flexible

Routine is very important for autism. It gives them a sense of control, and awareness, safety. For Chris, like i said before, we started with pictures of everything in the house. So this was his point of communication for the first couple of years.

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This was what we used in the beginning. Colourful, sticky, big to draw his attention. Green is the colour of relaxation and peace. Red to separate the things he wanted to say urgently. The picture at the top is of a hand reaching out to grab something and it reads “I want”

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 This is the box i found of all the pictures we had of thing in our house. Some you can see in this picture include numbers, spoon, hat, soap, honey, umbrella, milk, bread, toys, toothpaste etc. This is less than half of the pictures we’ve had over the years. They’re all laminated and can be attached to the board shown above. At the start we only used picture to lay out the routine of the day. So you can imagine the space, effort it required and the panic of him finding exactly the picture he needed. We used clear pronunciation for each picture he used, and slowly established the relationship between the picture and the sound.

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photo (1)These are pictures of his calendar. It reads “Our Calendar” and it has spaces for Year, Month and each day of the week. This is an easy way to give them a sense of time. You can also see the stickers we used for Months and Days. Over the years we’ve had a range of different layouts. But we always have Chris fill in the blanks so that he is aware of time, date, day, year etc.

As yoimage (14)u can imagine we couldn’t carry all his boards with us, as we traveled every year to Sri Lanka. This is a picture of the book we put together to carry with our during or trips. It’s of Mickey, because he loves him.

image (15)Inside you can see we again had lines and pictures. Pictures on this page included the toilet, hug, playing, going shopping, going to a shop, water and soup. He was to use his “I want ” sticker with one of these. It made travelling so much easier because now we knew what he wanted to be calm.

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As his speech therapy progressed we put pictures and words together and formed sentences which he had to say before he got what he wanted. Some examples i dug out were; Mum I want a hug, I want to play on the computer/game boy, I want pasta, I want to go to granma and granpa, I want to sleep. Once he familiarised himself with all the pictures and the sounds that went with them he didn’t need them anymore. He can form sentences now all by himself and name anything in the house.

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We also used pictures to show him how to do things, like take a bath/shower, change his clothes (picture), make his bed, the process of travelling or getting ready for bed. Any action that needed a sequence of events we had pictures of him doing it. Now he doesn’t need pictures to know how to take a shower, or that he has to brush his teeth before bed.

Now he has a weekly plan. He knows months off by heart and has a sense of how far away or close they are. So for example, when I’m coming again, or when he’s going to start going to the beach, which days he stays with my mum or dad and which days he goes to my grandparents, when he’s going for a visit and to whom. These minute details that we take for granted – he needed to see.

You don’t understand the time and effort put into our children’s education and every day life. Maybe if you learn about autism, next time you see a 16-year-old flapping his hands you won’t judge the parents or stare.

Educate yourselves, learn about Autism.

Families: Invest in this system, it really works out for them in the long run. You can adjust this to the need of your own child. Please don’t hesitate to contact me if you need any further information.