I post a lot about the successes and achievements of Kipper, now age 10. Many of which Kipper’s Dad and I have taken most of the responsibility for, until recently, when we now include his school. This blog is different. This is where I give a snap-shot of two hours taken from a trip of a lifetime and the impact autism can have.
Let me start by setting the context and flagging my proud moments. We are on a road-trip in Europe. Kipper helped plan some of it, has had to cope with different bedroom arrangements, smells, noises, social expectations and cultures. He is on his own mission to eat as many different foods as he can. This is the kind of thing I post about. It has been hard work for all of us to enable him to manage and enjoy this level of flexibility. I am immensely proud of our and his achievements with this and the input from his ASD unit in his mainstream school.
The two hours I want to post about start on the way out of The Dukes House in Venice. Kipper’s sister, aged 8, and brother age 5 listened to aged-modified descriptions of the rooms. Kipper could repeat back if challenged to, but mostly he held the guidebook in outstretched hands and ‘drove’ from room to room getting cross when we asked him to keep down the noises he made for the sake of other tourists. We had to apologise a few times to those he got too close to.
Many interactions during those two hours had to include something about bananas. He would say the same sentence frequently. ‘Can you eat green bananas?’ and no matter how differently we answered him, the same question was repeated often. We would point to a clock for example, to show the interesting feature of a planet and he would look, nodding, repeat back and respond with, ‘Can we grow a banana tree in our garden?! Five minutes later when we asked him a question about the clock (that we had spent a good few minutes making sure he had processed and understood), he couldn’t even remember it. He gave a good performance of learning but had actually heard nothing, except, perhaps his own thoughts about bananas.
Despite the fact that his siblings were interested in learning about the Venetian Duke, I am not suggesting that Kipper must too, as this was very much an adult-led agenda. But if he is to learn in a state Secondary School, he will need to have either the skills or the support to be able to learn when it is adult-led like this. As we go through his EHCP transfer for Secondary this year, I expect to be told soon that Kipper will need to learn how to learn independently without adult support and that he must not become dependent on one support assistant. I agree, but if I can’t get him to learn one small piece of information about a clock as a parent giving 1:1 support with a string of training courses and experience, then I am highly sceptical of the Local Authority preferred model of a several class teachers with several shared TAs being the solution to Kippers learning difficulties.
Independent Learning is a skill Kipper needs to learn through active specific teaching, with targets and measures of success and progress. It is NOT a skill he will learn through abandonment. Abandoned, he may learn all there is to know about banana plantations perhaps, and that may be useful, but he’ll never be able to write about them, or put them in historical context or get the other skills required for a job that involves them.
As we leave the Palace, Kipper mutters to himself ‘black black yellow’, black yellow, dark yellow, yellow, light green’ etc, as he categorises several colour stages a banana must go backwards over time.
Walking along the Grand Canal we passed a park and Kipper pestered to go into. We tell him we’d like to see more of the Canal but when he makes loud ‘Grrrr’ noises and stamps his feet, his Dad allows him in for 5 minutes and tells him we’ll wait outside. We are confident he will not get lost as his navigation skills are good and so is his time-keeping. He comes stomping out. There are no banana trees in this park. We point out to him and his siblings, the bridges and the boats but he starts a conversation about wanting to stay up until midnight and go for a walk to hear crickets. This has been a daily theme too.
Stopping at a shop with postcards, Kipper asks to buy one. We give him enough money for a card and a stamp and he makes a successful transaction independently, able to use Euros, check the change and wait for a receipt. For the next 20 minute he walks oblivious to the sights around him, happily stamping and chanting all of the numbers on the receipt in the order in which they occur. He stops to wrap the receipt around an interesting curved handrail of a bridge and moves it backwards and forwards refusing to move on before he had completed the full bridge in this way. His younger brother took an interest and they made up a song together to accompany the movement using Kipper’s verbals stims ‘Bubb, bubb, bubb, bubb!’ He explains to his little brother that it is the Italian accent of the postcard shop-keeper.
We stopped at a water fountain to fill up our water bottles. Kipper undid his lid, filled up his bottle (both unscrewing tops and coping with the sensory experience of water spillage have been big challenges he has overcome) but then could not find lid anywhere. Asking where it was, was met with ‘How much do bananas cost in Africa? Can you get a whole bunch for 14p? As parents it is frustrating. We need to find the lid. We need him to be motivated to find the lid or at least not lose it. His future is at risk without these types of skills and attention. He continues the walk in a jerky fashion, pretending to be on the first 3 seconds of a 0-100 rollercoaster, causing people to startle and jump out of his way.
To give ourselves some respite from the crowds, their stares and intolerances we headed off the beaten track and down some of the narrow streets when there are fewer people. Here we are treated to the perfected palmas clapping, as kipper explores the different echoes of the streets. Romantic couples who are out for a peaceful walk give us dirty looks. I get a headache.
We reach a busy square and Kipper suddenly jumps, stretches out and then falls to the floor. I ask him why he did it but he refused to answer. Later he explains that he wanted to lie down a bit in sun and a bit in shade to see if the stones felt different temperatures. He couldn’t lie down in such a place though if he wasn’t tired apparently, so he had to yawn first and then fall to the ground.
A few minutes later he was talking to his sister. They both jump off a high step together and pretended they were skydiving. The next 10 minutes he is engaged in discussion about what he can see on the ground as if he were flying over a mountain range with a parachute. He and his sister pretend to communicate by radio. In their shared imagination, they’d jumped off the Zugspitze, the highest mountain in Germany which they’d seen in real life a few days before. His younger brother is following a pigeon with his arm held out pretending to walk it. For that 10mins we feel like a ‘normal’ family. All three children were then involved in ‘acceptable’ non-engaged activities.
We had to walk through an outside bar in a VERY narrow street which meant lots of cigarettes sticking out of unaware hands at a level unsafe for the children. I call the kids together to explain the danger. I had to say Kipper’s name 6 times to get him to respond, and then repeat a further 3 times the information I wanted him to have. He was still, in his head, in the air with a parachute. And then we are back to the clapping.
Quiet clapping this time with one hand above the other and elbows out, and always done within in inches of another person, chosen for proximity and not discriminated by whether or not they are known to Kipper. It’s a habit/stim that winds me up. It is irritating as his mum, but my fear is that it puts him in easy range of being hit. In my head I start to plan an intervention to stop it, but I’m too tired to think.
When we return back to our rented flat he wants to show us the photos on his camera. Picture after picture after picture of pigeons. He explains fat ones, thin ones, ugly ones, dwarf ones, discoloured ones and labels them all with different personal attributes he has learned never to direct at people. No towers. No boats. No bridges. Just pigeons. We have a discussion about homing pigeons and he seems interested. We try to support his interests as we notice them despite slight disappointment about what he has taken from the trip. In hindsight, we got it wrong though. He wasn’t interested in pigeons but in the personal attributes he has been drilled never to direct at people due to their social consequence.
The pigeons were a clever way for him to explore a topic he was interested in, which when you’re tired, and have spent a fortune and substantial energy on trying to give your child an experience of a lifetime, is hard to accept even when you understand. How will Secondary School teachers who only see him for an hour twice a week manage?
We explain that communication technology has moved on now and ask him to suggest what we now use. A ridiculous question to ask given his rigid thinking. Again, if we are making such fundamental mistakes how will his Secondary school teachers get it right? He was quick with his reply. ‘Parrots?!’