It would be easy to conclude, in the face of all the traumas, meltdowns and difficulties, that my son’s first year at school had been less than successful. This is the child who tries to escape from the classroom because he wants to play outside, despite the raging storm, then throws a major tantrum as he is physically restrained. The child who has taken to screaming, “I’m changing the rules!” when it is suggested he follows them. The child who molests his classmates out of curiosity. Not exactly ‘Star of the Week’ material, is he?
Looking around the room at my son’s annual review meeting, I couldn’t help but think, ‘how much salaried money is sat around this table?’ How can a four-year old generate such a mini-industry of educators and health professionals around himself? How many people does it take to educate one child? Is he really such a handful, such a needy case? Despite the room being packed full of people, we still found time for some awkward silences before we began. I can see how some parents would find these meetings terribly intimidating. Even with our backgrounds in education, my wife and I still feel tense beforehand. Whether I like it or not, these sorts of meetings are a permanent reality of my son’s school years. The brief parent’s evening appointment and end of year report will not suffice. Only the assembled autism task-force can tackle my son’s needs. Despite this, the meeting was, from all points of view, a resounding success.
As expected, there was a great deal of progress to report. Without losing sight of the fact that my son has a full-time TA, it’s very gratifying to know that he has been able to participate so fully in pretty much everything this year. He is socialising, or showing interest in socialising, more and more with his peers. He was involved in class assemblies, harvest festivals and sporting events. His attention span and ability to sit has improved, he is self-confident and he is learning well. Really well in some cases- his spelling and numeracy levels on the Early Year’s Framework are at the highest level. Of course, in other areas (personal and social development) he scores very low for his age. That’s pretty typical of my boy- no middle ground for B, he’s one extreme or the other! But mostly, he’s a superstar. We’re so proud of his achievements this year.
Sitting there in the meeting, it struck me how far we’ve come as parents in a short time. Just a few short months ago we struggled through a similar meeting, listening to a similar litany of my son’s inabilities and struggles. Each failure to fit in or reported meltdown was a dagger through the heart. We took it as a failure of our parenting and, if I’m honest, a failure of our child. This was not part of the plan when we had kids. This was something that happened to other people, not to us. Not our boy.
Now though, things are different. We’re different. Along with all the positives were plenty of negatives, like SALT’s assessment of his zero-attention span, or the class teacher’s tales of his quick temper. But this time, we did not let these reports get us down. We still don’t like hearing them, but I think our sense of perspective is getting better. We’re more able to see the whole picture, which is one of progress, than focussing on particular details. This change has happened quickly, and it has happened out of necessity. I’ve spent far too long feeling sorry for myself, silently seething at the injustice of it all and taking each setback to heart.
It takes other people to help you see the progress that is being made. I think parents are the worse placed people for being able to see how far a child has come on. We’re too busy dealing with the day to day details of family life to take a step back and say, “look how far he’s come”. I also think, and perhaps this is just me, that we see negatives too easily, whilst taking the positives for granted. It’s up to the grandparents or neighbours to marvel at how much his speech has come on in just two weeks, or to remind you that his skills really are amazing and special. I said to my wife recently that we must not forget to enjoy our children’s childhoods, because for all the problems, this is a priceless and treasurable time in all our lives.
For a long time I questioned how accurate my son’s diagnosis of ‘high functioning autism’ was. How could a condition that so obviously set him apart and caused such delays in his development be high functioning? At the age of three and a half, when his communication was so limited, it was difficult to see how my son could ever function in the world, let alone to a high level. What the paediatrician had, of course, was perspective. Her words still ring in my ear- “This child will be alright.” I feared she was wrong but now realise how, having seen many other children like my son, she knew what she was talking about. Recently on Twitter someone wrote, “For those of you who think I’m “high functioning”, or less autistic than others, all I can say is, you should have known me when I was 4.” I’m not entirely sure of the writer’s intention, but I take this as a sign that in adulthood comes the ability to find your place in the world and to function. I think my son is heading in this direction.
One of the reasons I starting writing this blog was the hope that parents who found themselves in our shoes might read it and maybe even find it helpful. Most importantly, I wanted them to know they were not alone. For the families of those on the spectrum, autism can be very isolating. I know we felt very lost and alone in those first months. Perhaps by reading of our experiences, warts and all, it would help them through theirs. I’ve tried to be honest about the difficulties and the pain, the frustration and the battles. I’ve said it before, but I could not find the books that reflected what I was feeling, hence the blog.
Now though, one year on, I have a different message. And the message is that, however difficult you’re finding it now, it does get better. The lows will still be pretty low and the problems don’t go away (they just become different problems) but, I promise you, things will improve.
I truly believe that, because it’s happened to me.