Kumbengo, acrylic, November 2013
With each new thing I needed to start with something where I had seen a spark of interest before. There was a book out on the sofa, a heavy secondhand one that I had bought for Iris years before. I had read many poems and nursery rhymes from it that Iris had liked and I noticed she had the page open on ‘The Owl and the Pussycat’. A plump brown owl sat with a tabby cat in a pea green boat in the blue sea with a pot of honey, some money and a guitar under a starlit sky. This is what I would recreate; we would make a boat from a cardboard box with props and, of course, Thula playing the part of the cat. We would then work on the vocab for the poem, practise writing some of the letters and saying the words. If that went well, we could move on to another one from the book, maybe ‘Hey Diddle Diddle’: a brilliant combination of cats, music and farm animals, which I had in my mind for the next theme.
I read through my plan once again, going clockwise. The English section was packed full of books, poems and rhymes. The arts section had all sorts of projects like making cat masks to encourage Iris to interact and to play. For ICT she would use my computer to practise typing simple words, her iPad with apps, and try out my camera to take photos of Thula. To add some science we would weigh Thula, compare sizes of cats, look at what whiskers were for and the other parts of the body. To practise maths skills we would count whiskers on the mask and maybe on Thula if she was sleeping, put the wild cat toys in size order, count them up and start to introduce addition. Geography was easy enough with the wild cats, and a zoo visit was essential for her to see them. And finally for some history I had a beautiful book, The Cat: 3,500 Years of the Cat in Art, which we could use, maybe looking into the Egyptians too. It was going to be an amazing feline journey. But to start we needed to make our boat.
Sea Whistle, acrylic, April 2013
The paint had dried and as I took the cardboard boat out on to the decking Iris was dragging a bundle of blue fabrics that I had collected earlier. She knew that they must be an important part of this mission. I created a sea of cotton around the boat and added a few sensory toys: some sea creatures, a crab, some fish and a lobster. Then I hid a small bag of treasure inside, along with a jar of honey, Iris’s pink ukulele and some binoculars to admire the view. I went to fetch some other items: an owl mask we had created earlier and a ring for the pig puppet. I put those in place and added a few silver stars to the hedge on one side – magic surprises that Iris could find and count. As I talked to her about the sea and the fantastic journey that we were about to go on, she looked at me as if to say ‘Are you mad?’ Then she ran off, returning with my iPhone and Thula trotting beside her. No adventure was complete without Thula and Peggy Lee. She navigated through the various settings to select her song and then we were off. Thula and I got in with her; it was a squish but Iris was grateful for our company as the vessel was still undergoing some inspection and not yet a safe place to be. As she explored she found the bag of treasure, and the golden coins and seashells glinted in the sun. She felt the texture round their edges, rotating them in her hands, then when she gave me a nudge I took my cue and climbed overboard. My plan was working; all those hours of finding the perfect box, painting it and finding the props had paid off. It felt very good indeed and I felt so pleased with myself.
But then Iris got out too and disappeared into the house. I had hoped all my efforts would have entertained her for a little longer. I felt disappointed. Had I gone too far? Was this all too much? Did I need to simplify things? After all, most of the advice I had received in the last year from experts and therapists who specialize in autism talked about teaching those on the spectrum with simple concepts and clear instructions broken down into stages. My methods were doing the opposite on many levels. But then through the glass I could see her coming back, this time with the iPad. Back on board Iris selected Google Earth, rotating the world, zooming in to South America, scooting over the Pacific Ocean and gently cruising her way around the planet, stopping every so often to take a look at the horizon through her binoculars.
This wasn’t just playful antics. Iris was plotting her journey across the Pacific Ocean. It was way beyond what I expected. Her ability to understand and analyse a situation, her enquiring mind and intense focus, could still surprise me at times. Her autism meant that imaginative, pretend play was consumed by a curiosity about how things work and a fascination for nature and its beauty. It was a powerful gift and one I intended to use to help her understand new concepts. Iris was using her imagination but in a rather different way to what you would normally expect from a child of her age. To me it was brilliant. Thula played with the jewellery that she found in the treasure bag and Iris dangled a necklace in the sun as Thula batted it with her paw, making it swing from side to side. Iris happily hummed, watching the dancing splashes of light that the necklace created against the inside of the boat; it was like shimmering water reflections, adding to the magic. I read out the poem and Iris repeated parts and giggled at the part about dancing in the light of the moon. I used the puppet and the mask to encourage her to interact and that afternoon I wrote out the key words from the poem and Iris read them from the cards with ease.
Iris’s education started to fill our lives. It didn’t fit into set hours or days of the week; it took on a rather more spontaneous and organic feel. Every time we saw an opportunity P-J and I would take it. P-J took on the role of the storyteller; I made sure there were always plenty of books around on the current theme and he knew some of them so well that he could act them out, encouraging her to fill in the blanks. It didn’t matter if it was late in the evening or early in the morning, in the bath or on the bikes; if she wanted to learn and explore or she was interested in a topic we went with it. It didn’t even matter if I had already made a plan for another theme; I would put that to one side and go with what was most motivating Iris at that point. The freedom was powerful, although it did take some getting used to. P-J especially liked to go with what had worked last time, but we both needed to learn to see what was working on that day rather than to cling on to past successes. Once I had prepared a topic and put all that effort in it was tempting to just plough on. Sometimes I tried regardless, but after some unsuccessful sessions I had to remind myself to stay true to my ethos of following Iris. Without a strong motivator she was very difficult to teach; in fact, at times it was almost impossible as she wanted me away from her. It was frustrating at times to be taken into another room, but if I didn’t leave she would walk off, and if I forced her to stay she would be so distant I wouldn’t achieve anything with her anyway. I would want to either burst into tears or scream with anger at why life had to be so difficult at every step and why she so often wanted to be alone. The thought that always pushed that negativity away was that it was harder for Iris. Her frustrations were so much greater. She needed us to stay strong and positive for her; she needed help and understanding. So I would take a deep breath, think hard about what I could use to reconnect with her, what lines I could say from a favourite book or song, or maybe which toy I could bring into the room that was on the theme that had inspired her.
Unlike most children Iris didn’t have holidays or specific times when her education would stop. It was and is continuous, but we would constantly observe her, so if we felt that she needed a break, that she was tired or not in the right mood she would have some time alone with her books, listening to music or exploring in the garden. We learnt to gauge when we could work with her, when she just needed space and when we could use some of her relaxing activities as a teaching tool.
It was a magical time. Every day seemed packed full of delightful moments shared between us all and homeschooling became so much easier with my trusty teacher’s assistant. Whenever I brought out a new activity Thula would be first at the table, leading the way and showing Iris that change is a good thing and how fun it could be exploring these new sensations and experiences. Iris then followed and I watched in delight as she grew in confidence.
&nbs
p; Sometimes even our bike rides were transported into the current theme. After one week without our rides out in the countryside due to bad weather, we were all delighted to be speeding along the canal again, on our way to visit the black-and-white hairy pig, who played the part of the pig in ‘The Owl and the Pussycat’.
So there in the wood where the Piggy-wig stood Thula tried as best she could. At first she shivered at the sight of the pig and Iris put her arm round her and did a little jig as we all giggled at the grunts and said ‘hello’ to the pig. Thula quickly gained confidence with her best friend beside her and looked down upon the beast from the basket on the bike with ears and whiskers forward.
There was just one last trip to finish our wonderful expedition into the cat world and to celebrate Iris’s fifth birthday. The zoo.
Iris looked out of the window, she was interested in the cattle in the field, their huge horns and chocolatey-brown silky coat. As we passed by she nudged me to take a photograph. We were side by side in the back of the car for this drive-through safari, my lap covered in cameras, books and toy animals. It was a perfect introduction as Iris wasn’t yet confident enough to manage the crowds at a zoo but with the protection of our familiar car she was handling the new experience beautifully. She laughed as I talked to her about what we might see next and picked up the toy tiger, rotating it in her hands, feeling the texture. We saw rhinos, monkeys, zebras, tigers …
As we entered the enclosure with the North American black bear Iris was happily eating her sandwich. We stopped to look at a very handsome and rather large bear right beside us. She looked out of the window and then hid her sandwich down beside me with a knowing glance. It made me laugh and then I got a nudge to take a photo. My purpose was clear; I was the image catcher, the photos reminding her of our journey once we were back home.
That evening while Iris was settling down in her playroom I gave her a hug. ‘Happy birthday,’ I said. ‘This year will be wonderful, darling.’
‘I’m five,’ Iris replied.
One day a lady from South Africa emailed me. She had been following Iris’s story on Facebook and wanted to tell me about a company that offered a rather different type of speech therapy, which she thought might help Iris. She had been trialling it out in her school and had been very impressed with the results. The program was called Gemiini. It was an online video library that had been filmed specifically for those who had issues with their speech. Each short video would focus on one word or even a short conversation and there was a choice to either see the mouth moving or the person saying the word with a picture of what they were saying beside them. It was really easy for us to use and I quickly started to introduce words on the current theme to Iris using the Gemiini platform. She would sit next to me at my computer and watch these videos avidly for twenty-minute sessions several times a day.
Iris and P-J were laughing hysterically at the kitchen table. I watched from the door as she asked him to do ‘monkey’. She waited and giggled, looking straight at him. Again I heard the word ‘monkey’. She paused, then she lifted up her arms and said ‘ooh-ooh-a-a-a’, trying to get him once again to do another round of monkey impressions, which he did. Iris got the hiccups from laughing so much and the game went on with other animals that she had learnt about from the videos. Her ways of interacting and playing with us were starting to change. She was now using her voice and enjoying it; it wasn’t as tentative or as sporadic, or even repetitive, like it had been when she had got carried away before. When she had first started speaking she had got fixated with particular words, but after using Gemiini she was repeating words daily in the right context, constantly getting me to read words from books and studying my mouth while I said each word. I felt certain it was the positive impact of the speech-therapy videos because they focused so much on the mouth. A child with autism usually avoids eye contact as much as they can unless you are really encouraging it, so I think she was missing many of the skills she needed, just by not seeing enough of what our mouths were doing when we spoke. She would get my finger and guide it to the text that she wanted repeating, then watch my mouth intently as I spoke. It didn’t seem to end at the words in the videos; they were a starting point, igniting her interest in different ones. It also seemed to help with her social skills and encouraged Iris to answer questions – just basic things to start with that she had seen on the videos. For P-J it was a real turning point because he had wanted for so long to have silliness, fun and games with Iris; his Peter Pan character had always been trying with Iris but she hadn’t yet had the skills to be able to join in. Now that was changing.
Iris’s new skills soon extended to the rest of the family as well, and when P-J’s mother, Helen, came down from Lincolnshire to see us all I watched from the decking as Iris guided P-J’s and her grandmother’s hands together. Once they were holding hands she pushed upwards and positioned them in a bridge shape and then she ran underneath. Back and forth she went with her blue cape flying in the wind, through the tunnel and out the other side with squeals of excitement.
Since we were introducing so many other activities to Iris’s day she was painting less than before, but the table, paper and paints were always out for her to use whenever she wanted to. There was a painting that sat in the architect’s chest under a pile of unfinished pieces. It wasn’t forgotten about and was often revisited but never finished until one rather stormy day. The wind blew so strongly that day that I worried we might lose some tiles off the roof. I stayed close to Iris in case she needed me, but Iris had her painting and with it placed on the table in the kitchen she worked fast, an array of colours splashing this way and that. While the paint was drying she used tools, toys and stamps to add texture. She jumped excitedly as she saw a pink layer below being exposed. I named it Octavia as a reminder of its eight-month journey.
Octavia, acrylic, May 2014
I had read about a study that proved the brain of a child with autism creates forty-two per cent more information at rest than the average child. Their brains are actually superpowered, something that at first seems incredible and an overwhelming thought, but it makes you realize on a daily basis how much our children and adults on the spectrum are dealing with, and the importance of them being able to find peace.
An idea was forming, to start a global project through social media, asking anyone on the spectrum to answer our questions about how they experienced the world, to give us valuable insights that would help us and others understand our children. I called it ‘Answers from the Spectrum’ and every Monday for months I asked a different question and let others ask theirs too. The answers were enlightening and respondents always tried to explain themselves in ways that others would understand.
One Sunday evening a parent wrote to me asking if I could post a question about noise. One of the answers I received struck a chord with me and I could see how it applied to Iris too: ‘Think of it like a photograph. For most people, only the object in the foreground is in focus. For me, it’s like there’s no difference between the subject and the background – it’s all in focus. So instead of a well-composed artistic shot, it looks like a mess. I know I’m supposed to be looking at the person in the foreground, but my attention gets focused on the stuff in the background instead.’ This helped me understand why Iris struggled so much in busy, noisy environments: why she needed help in those situations.
Another week we asked about stimming. Stimming or ‘stims’ is short for self-stimulatory behaviour. We all seem to do it, whether it be tapping our feet, a pen or maybe twiddling our hair. It appears to be a way of calming ourselves or aiding concentration. For those on the spectrum, stimming usually refers to specific behaviour, such as flapping, rocking, spinning or repetition of words and phrases. Sometimes they can be more unusual and surprising. Iris does this when she is excited or starting to get overloaded with sensory information. It can swing both ways; it can be a sign of pleasure or an indication that life is becoming a little too much for her. Now I can tell the
difference and act to quieten things down for her if necessary. Many believe that stimming is an undesired behaviour and doesn’t help the child or adult integrate into society; they will say ‘quiet hands’ to the child and make them sit on them if the child can’t stop. To me this seems cruel; their bodies are doing this for a reason, to release energy in order to manage those feelings, and many on the spectrum have described it as a pleasurable experience and one that they need to do to regulate their own systems. I feel that by stopping this behaviour you may appear to be stopping a problem but are perhaps creating a much bigger one – all for the sake of appearing ‘normal’.
The feedback I received on the topic from people on the spectrum was incredibly insightful. One person said: ‘It is a release of energy for me, and I feel so much better when I rock my body back and forward, or swing my leg, which is crossed over the other leg … It makes me happy and it relaxes me.’ Another said: ‘I do this when I’m excited and overwhelmed (good and bad). It releases tension, rebalances my energy, and if I’m in a good mood and having fun, keeps that feeling going.’ This information was so useful for me; it made all the theories and research real and I hope it helped many other families too.
Iris Grace Page 18
