Following up on the previous post. After the initial shock and awe, we started to react. The first thing we wondered was wether we (the parents) had misunderstood the opinions of the various specialists we had met. We had a simple question:

Is the public school the best educational system for our son, to allow him to learn, socialize and, simply put, ensure he develops into a happy teenager, accepted for all he is?

Fortunately, we are not on our own when facing such questions. We therefore turned to our son’s network – his “I can network“.

The network is the most important tool for kids on the spectrum and for their parents. It is a team of specialists, educators, therapists, coaches – whoever can help your child on any specific aspect of his ASD. The network is typically assembled by the parents and it takes a lot of energy to set it up, keep it alive, but it is a fundamental component of early life on the spectrum. Our son’s network kept growing over the years and now includes his beloved speech therapist, a psychologist from the newly founded Center for Autism, two ASD specialists who focus on learning and behaviour, our pediatrician, the in-class aid from the county school system and soon an ergotherapist.

We asked the question above to each member of the network and we received the same simple answer: yes, your son has all the necessary intellectual skills to learn and benefit from the school environment. But the school needs to adapt to him, much more than the other way round. Just hearing this provided the necessary energy boost and relief we needed to keep going. We planned a meeting with the school authorities, teachers and the whole network. A member of the network was mandated to visit the school, attend a few hours in class, observe and give feedback. The report was clear and interesting: the school was still largely clinging to the official programme and methods and expecting our son to … to change I guess (I almost wrote “to heal”, from their perspective). It was also clear that the staff was simply ignorant and unsure if they should ask any sort of help. The teacher, who has 20 years experience and is a great teacher I hear, was just baffled by the challenge. She thought she just needed to excel in the traditional methods and dealing with our son was just way out of her comfort zone. More on that later – it is an interesting observation.

The day of the big meeting came. Thanks to discussing with our network, we were prepared. We accepted that the network met first with the school authorities before seeing us: it is easier for the school to hear criticisms if the parents are not in the room. When called in, I first talked at length, giving a positive spin to the conversation. That we were convince the school was the right place and that, given sufficient inputs and with a bit of flexibility, the teacher would just be great. That this was no ordinary education, but also that the outcome would not be ordinary: we were in to literally offer a chance at a better life to a 6 years old child. That the other kids would benefit from the whole experience by learning to appreciate and accept difference. That we did not care if our son didn’t follow the whole program. That we understood the challenges of the school and would do all the possible lobbying work so that authorities provide true means for their mission. I then took a deep breath and talked to the teacher. I told her I could feel she was lost, that she had the impression of being powerless and useless. “My last thought every evening before I sleep”, I told, ” is the same. I think that I must be the most miserable, useless, powerless father for my child. Imagine your frustration and amplify it by the feelings of a father for his son. But “, I continued, ” every morning I wake up wondering what I can do for him, and that’s getting me through the day because I really do help him”. You see, one thing I learned as the father of an ASD kid is a golden rule for survival: you have to let go off that feeling of guilt for it is useless. You’re not going to help your child this way. You have to keep moving, again and again and appreciate all the tiny steps. Because they sum up to giant leaps for our sons.

Here is what I am asking of you”, I told her, “help him take these daily tiny steps. And in the end he will take you on the next giant leap.

The outcome was quite positive. The director of the school agreed to propose a specific programme for our son, with the help of the network. The teacher agreed to learn and adapt as much as possible, which is what we were looking for.

Not everything is rosy. To help the transition, our son will only be part time in school, roughly 14 periods (say 50% of the time). We take him out for various therapies and he stays home the rest of the time. This means one of us (my wife or I) have to be home pretty much 100%. My wife has completely sacrificed her career and will continue to do so  -even though this is a point of disagreement between us. She was in the last stage of interviews with the research center of a big internet company whose name starts with G and offers the best jobs in Europe. The way she handles these sacrifices is just unreal.

But hey, tiny steps is all we’re asking for !