[File this post under awareness – I am not asking anything else]
If you’re a parent, you’ll agree with me that it is hard to imagine worse than a lack of present and future for your kids. No little friends coming at home. No birthday parties invitations. No school play. No soccer matches on Sundays. No graduation ceremony. No first girlfriend. No first job and the joy (sweet agony!) of seeing your loved one grow into an independent adult, ready to play their part.
Yesterday, we had a meeting at our son’s school during which his future was taken away from him and from us. My 6 years old son is on the autism spectrum. My beautiful, funny, mischievous son is about to enter limbos unless his mother and I fight violently enough to give him a chance at a decent life DESPITE public authorities. Here is what happened. Our son spent two years in a private school, inside a regular class. We funded a 100% in class assistance to help him focus and interact with the teacher and other kids. This was part of a whole network of therapists around him. He made a lot of progress and followed the cursus, learning to count, do basic operations, read and write (though his writing is not good because he does not have a good grip – working on it). After these two years, kids enter a new cycle and we had to decide wether or not to stay in the private system or move to the public one. Costs aside, the public system seemed a good choice because they have a mission of being inclusive with neuro-atypical kids and they have a privileged access to the public health system. On paper it looked excellent and our son would join his older sister at her school. We met with the school’s dean, state school inspector and part of our self-established network. We, and the people taking care of him, described our kid and his challenges. The school told us they had some experience and even had a teacher who volunteered. It was almost too good to be true.
Here is a story that keeps repeating itself over and over: the public authorities set up a policy, politicians will communicate how wonderful it is. But in practice no means will be invested. In practice, the school has no experience, no dedicated staff, no program. They were thinking that they would just welcome our son and he would simply have to learn to behave like a “normal” kid. If you have a child on the spectrum you see where this is going, don’t you ? We did not see it coming. We had prepared him to school over the summer, visited the place. We set up a schedule. He happily started the year and we thought everything was alright. Unfortunately it wasn’t. It started with his older sister (9 years old) bursting into tears at home, explaining us that he is always left on his own during breaks. Some teachers forbade her to play with her brother because he “had to learn to play with others”. Then he had a full meltdown at school. If you have a kid on the spectrum, you know what I am talking about and I won’t describe it here. We were called to the school and discussed with the teacher and the school dean. What unfolded was pure disaster.
Except a few hours per week (!!!) where an assistant (with no qualification whatsoever) helped him, nothing was done to help our son integrate smoothly. No schedule, no program, no hint at a method. He was just supposed to adapt all by himself. Of course it did not work, but the school did not tell us for a full 3 weeks. During breaks he was on his own with the noise from 200 kids around. The teacher thought it is not a good idea if he uses his headphones. The school felt it was fine because “he seemed happy just walking around a bench”. In fact he was just trying to manage his anxiety until it was too much and he melted down.
In class, with no specific support he regressed. They quickly stopped trying to work with him and let him spend most of his time drawing, instead of the exercices he was perfectly capable of 6 months ago. They described him as a disturbance for the other kids because he was noisy. Of course, he was left on his own with no instruction and support: typically a kid with ASD freaks out and does typical routines to re-assure himself in this situation. He had to completely lose it for the school to finally tell us something was wrong. At home he was getting back to his known universe and was ok, until the meltdown – it took a few days to reassure him.
When we met with the teacher and dean and discovered what had happened for 3 weeks, we were in shock. But the worse was to hear our boy being described as a disturbance. They were not asking for help or input. They were telling us to take him back and place him in a specialised institution. Gone were the good will and smiles of the politicians, the grand talks of the school being open.
We have since called and met various specialists. Did we do something wrong? Did we misunderstand that the best place for our son was a regular school ? Did we misunderstand that the school ought to put a program in place for him ? Why didn’t they do an extra effort at the beginning and then gradually decrease support ? Were the evaluations of his cognitive abilities completely wrong ?
I can only compare the life of autistic kids and their family to those migrants trying to reach a better future in Europe these days*. Every day and in every aspect of our son’s life, we face an ocean to cross. We hurl ourselves into these raging waters, with little or no support. We fail. We sink. We cling to whatever we can. And start again. And yet, if we manage to cross we are only met with contempt and exclusion. We are the immobile migrants. Ours is a fight through time and against time as we flee ignorance and segregation.
*Don’t get me wrong: I am not in any way comparing our situation to that of migrants in Europe. These people live through a considerably more dramatic situation. I can not even begin to imagine the courage it takes to take your family through war, deserts and the raging seas in hope of a better future. They are the true heroes of our time, and one day shall be recognised as such.