It’s a bright and sunny morning, blue skies and it should make me feel cheerful. We haven’t had too many of these lately.
Every morning Zach is collected by taxi, this has happened since he was 4 years old, that’s nearly 18 years ago now.
The taxi was originally needed because the schools weren’t within walking distance, when you have a child who has additional needs they don’t go to a local school, they go to the closest appropriate school which can be quite some distance.
We have had a variety of drivers and escorts. There is always an escort who is responsible for Zach’s welfare while he is in the taxi.
We have had some drivers and escorts who have totally got Zach, and plenty of others.
Because someone drives your son to and from school every day does not mean they understand autism or your son.
They see your child lashing out for what they think is no reason, what they don’t know is what happened before your non verbal child lashed out.
Imagine a day where everything seems wrong for somebody who the importance of everything being right is paramount.
The wrong breakfast, they weren’t the right porridge oats. They were smaller and a different colour. A different escort in the taxi, she didn’t know how to put the harness on and she smelt different. Your class supervisor wasn’t in the classroom today, she is always there and usually greets you with a big smile and high five, the person there today wasn’t smiling at all. There was nothing for lunch which you liked, your 1:1 tried to make you eat peas, don’t they know you don’t eat anything green. You had swimming in the afternoon and you got to the pool to find the pump was broken and you couldn’t go in, swimming is your favourite activity and you were really looking forward to it. It’s nearly home time and you are looking forward to getting home and just chilling out and pleasing yourself. Everyone else has left school and your taxi still hasn’t arrived. The taxi finally pulls into the school gates and it is a taxi driver who talks about you as though you are not there and when you are getting in to the taxi he speaks sharply to your 1:1 and you lash out, you have had a day of being told what to do, of changes which you don’t like or understand and this feels like the final straw. The only way you can let somebody know that your day has been terrible is your behaviour.
This is what having autism can be like. For the non verbal the inability to let somebody know you are struggling with all the changes to your day, that having food you don’t like put on a fork and held under your nose repulses you, the smell of the escort was really offensive to your nose, the different person in the class room upset you, you like smiley people and people who are warm and friendly, you love swimming, the pool was there, it had water in it, you just don’t understand why you were denied your favourite activity, you were hungry all morning after not eating your breakfast, being hungry makes you feel grumpy, you wanted to go home and your taxi was late and then the driver raised his voice and you really don’t like people arguing or shouting.
This isn’t a real day but it easily could be and how some of the world perceive that lashing out.
We have all had days which don’t go well but we can usually talk about it through the day, understand why things are not as we hoped and express how it makes us feel.
This morning Zach’s escort who we all love and has a brilliant relationship with him was off work because she has had an operation. Obviously we all understand that she needs to recover but Zach doesn’t understand where she is.
Zach’s taxi driver recently changed, the driver we had for a long time has left. The current driver talks about Zach as though he isn’t there.
The car has changed, and the harness which is used is not the right one for this vehicle. The harness is made for a people carrier which is what Zach used to travel in to school. This makes it very difficult to do up the harness so usually the escort gets in the back with Zach and helps do it up.
I have tried talking to the driver about the harness being the wrong model for a car but he tells me that it isn’t. I have looked at the manufacturers website and it clearly states this harness must not be used in a car. I have let the Council know that Zach is being transported in a harness which is not only unsuitable but he would also be trapped in were the car to get shunted from behind.
This morning Zach became escalated while having the harness done up and the taxi driver told me Zach should be put into care.
It is hard to imagine feeling that you have the right to tell somebody else that their child should be put into care.
What does he think would happen if Zach was put into care? Does he think that because Zach was behind closed doors everything would be okay? That Zach would no longer feel anxious at change and all those things he can’t control?
The driver says he knows all about autism as he has driven a taxi for 15 years carrying young people to and from school.
It’s hard to know what to add to this post, I am pretty sure I don’t need to conclude with my feelings.
Autism never has a day off, the smallest changes can cause anxiety and panic. And I am really not keen on Zach’s current taxi driver.