First, some good news. On the same day this week we learned that B’s application for a statutory assessment has been accepted and that Disability Living Allowance has been awarded. As usual this type of news stirs up mixed feelings. It is crucial that B is assessed for a statement and therefore a great relief to ‘bypass the bin’ as a colleague put it. But that feeling inside never goes away- my son needs a statement. It feels wrong to be celebrating this. I feel even more uneasy about the DLA. He is certainly entitled, and I am delighted that the hours spent making the application have paid off, but I’m finding it hard to come to terms with. It’s that word- ‘disability’. My son is disabled. It’s another label; one that I’m struggling to accept. I’m looking at him now and I don’t see a disabled child, I see my beautiful son. I don’t want to think of him in this way.
The recent processes we have been through have forced us to look forward, particularly to September when B starts school. I have been very good at focussing on the here and now and not dwelling too much on the future. It’s a way of coping: we’re okay now, we can do this. Life is alright and B is a happy boy. I can deal with that. But the future brings all sorts of unknowns.
On the school run this week my wife had an unpleasant taste of what September might have in store. Whilst waiting for school to open and for B’s brother to go in, B excitedly ran around the school yard. He buzzed around a boy in his brother’s class who was playing on his DS. The boy quickly became annoyed by B and said, “Can’t you get your brother to behave or calm down?” It’s a minor incident, I know, but it cuts like a knife. Other children are not going to understand B’s behaviour, are they? How do you ask a four year old to be tolerant? Who are going to be his friends? How long before he becomes the stereotypical withdrawn, insular autistic child? I fear he will be the wierdo that no one wants to play with, that can’t join in and lives his life at a computer screen in his desperation to be able to control his world. And what of the effect on his brother? The incident highlighted the fact that B’s brother is going to be taking some flak. How will he cope when his brother’s differences and needs are magnified in the school environment? Will it affect his experience of school or even his relationship with his brother? Terrifying.
In our application for statutory assessment we included a letter outlining our perspective as parent’s and addressed some of these concerns. This is (some of) what we wrote:
In support of the application for statutory assessment, we would like to share our concerns as B’s parents. Like all parents we have concerns about our child starting school, but with B we are extremely concerned about his move to primary school following his recent diagnosis of autism. Our older son is currently in Year 1 and we consequently have some experience of what is involved, the expectations and requirements of a child in Reception. It is very difficult indeed to see how B would cope in such a situation. Put simply, we feel B would not cope at all in Reception without particular focussed support.
B will find it very difficult to understand what is expected of him in the classroom at school. He will not understand a teacher’s instructions and will need a lot of extra support if he is given a task to do. B still has some baby babble and will often talk nonsense. His words are often out of context and he can struggle to recall information. He can appear articulate, but frequently this is learned speech and phrases that lack context or comprehension. B will struggle with activities at school because of his short attention span. He will need help to keep him focussed on activities, which is often the case at home, where he flits from one activity to another without real focus. B cannot sit still for any period of time. At home he rarely sits throughout any mealtime, instead he prefers to wander around and to come back to ‘pick’ at his food, or will just refuse to eat. At school he will need support at lunchtimes in order for him to be able to sit for long enough in order to eat. He will also need support for any sitting activities in the classroom, and for assemblies.
B responds well to adults but does not interact with other children. He does not talk to other children and does not join in their games and usually keeps his own company. At home he has developed a close relationship with his brother but does not interact with cousins and other children he knows of a similar age. He is not a withdrawn child, but as parents we worry about the effect this inability to ‘join in’ will have on him, particularly as friends are made in the early years of school and relationships formed.
When we think about B’s transition from nursery to school we are very concerned about how he will cope. Although we have told B that he will be starting school in September and he is aware of the school, we know that he does not understand what we are saying and has no concept of what school means. Given the support needs that B has, we worry that without appropriate 1-2-1 support, and the chance to build a trusting relationship with a learning support assistant B will be a very lost little boy at school.
So there you have it. Looking forward to September, there are many, many concerns that we have. It is time to face up to these concerns- head out of the sand time. Although this is an angst-ridden blog entry, I know that in reality we will cope with whatever comes up. And what’s more, we won’t have to cope on our own. This week we’ve heard from Autism Outreach, Parent Partnership and the school itself. All offered help and support and discussed how we could start to think about the transition to school. Above all, I know that plenty of other children and parent’s go through this all the time. We can cope.