What is it like for @principal8 to have Autism?
My daughter, @principal8, has Autism Spectrum Disorder (ASD). She is 6. I would describe it as being in her own special world, and even though she speaks, most of her language is made up of repeated phrases (called echolalia) or learned responses that won't necessarily suit all questions asked of her. For example, when someone asks her what she has done today, she will respond with a learned response, such as, "I went to Gremmie's house"—even though she has not been to Gremmie's house today. She simply knows a response is required, and attempts to comply.
Just as she doesn't understand our world, I also don't understand hers. Communication is a key area that we work on.
She cannot grasp abstract concepts. If she can't see it, or hasn't personally experienced it, she won't understand it. If she does have an imagination, which no doubt she does, she can't make sense of it or communicate it. It has often been difficult deciphering what is wrong if she is upset. Most of the time we use guesswork to decode the problem. If she's sneezing, well, likely, she is feeling unwell. Even if she is asked, "Why are you crying? Did you fall over?", she will say, "Yes." Even though that is not necessarily the case.
Illustration of @principal8 by me
She also has difficulty processing sensory input such as noise, colour and movement, and becomes overwhelmed and "heightened", or "hyperactive". We call this "unregulated". To self-regulate herself, she seeks comforting sensory input that she enjoys, such as flipping pages of books, rubbing squeaky surfaces, or tearing paper. This comforting behaviour is called stimming. A more commonly known behaviour of autism that you may have heard of is rocking back and forth, or flapping hands.
While she misses a lot of auditory input, such as a teacher speaking instructions to the class, her visual memory is outstanding. At school, she copes by following what others are doing, if she misses what the teacher is saying. This is why we use visual support cards (like mini flash cards) to help reiterate to her what we are verbally saying, to help the information get into her brain more easily.
She has a wonderful sense of humour and is very friendly. While a lot of the time is challenging for her, she enjoys playing with her sisters, playing her iPad, she can read at an advanced level (visual memory is excellent, although comprehension is poor).
The fish pillow, that she lovingly calls "fush"
The original fish pillowcase (pictured at the top), believe it or not, I used to have as a child. My daughter became attached to it a couple of years ago and used to take it to preschool with her, even though its large size got in the way of activities!
When the time came earlier this year for her to start big school, she had to let go of bringing a huge pillow to school. Whilst the school is very supportive of special needs, it obviously wasn't a practical habit to continue. Thankfully, she was so distracted and excited that she coped very well with the loss of her comfort, although she was very glad to come home to "fush"—fish with an accent—at the end of each day.
She did develop some new coping strategies, such as scribbling and tearing paper, rather than doing her work, but with one-on-one support that we are lucky to have obtained funding for, she can now complete tasks with guidance and it has been a huge year of challenges and achievements for her.
We are now approaching the end of the year and discussion has been in place for how we can best help her transition into Grade 1. It was suggested that she have an item at school that is familiar to her and that she can take with her to the new classroom next year. Of course, we thought of the pillow, but it's size and the fact that she still needed it at home and was too precious now for a rough school environment, I devised a plan.
I photographed the pillow and imported it into Procreate on my iPad. I set about copying the faded and worn print afresh, and illustrated every line by hand until I had a square pattern that looked the same as the original (pictured above). It took me probably two hours.
I then exported the digital illustration into Adobe Photoshop, where I added her name (things get lost at school! Label everything! Why not put her name label INTO the actual design?!) and uploaded it to CanvasChamp— a custom canvas printing company that also prints on items like blankets and cushions.
Here is the result:
A smaller, completely personalised school-friendly cushion that she can easily leave on her seat in the classroom, that is extremely familiar and comforting to her. Something that she can grab and give a big, squishy hug at any time she is feeling overwhelmed or anxious. At times, she feels tired. She can grab her school iPad with the learning Reading Eggs app, headphones, and take to a quiet corner and sit or lay on her cushion.
And yes, it has a removable, washable cover.
Day 1: Her friends were accepting, and simply asked her what it was for. Her teacher said she LOVED it. I'm sure she felt some relief at having some support for what would be a very challenging student to have in her Kinder classroom.
Now, to get it printed onto a blanket ... a notepad ... stickers ... hmmmmmmm. The options are endless for her beloved "fush" print!
I hope this article has given you some insight into what it's like to have Autism Spectrum Disorder (ASD). Please note, this is only our experience. As it is a 'spectrum', after all, everyone with ASD experiences it a little differently. Some are completely non-verbal, for example. And no, unless you have been professionally diagnosed with ASD, do NOT say, "Oh, we've all got a little bit of autism, don't we? We're all on the spectrum!"
No, we're not. I respectfully remind you that we don't all "have a little bit of" Diabetes, or Parkinson's Disease, or Tourette's Syndrome. ;)
Thanks for reading!