As a teacher I have heard parent’s of children with a ‘need’ talk about how they have had to fight for the support their son or daughter has recieved. So far, this has not really been the case, although I do have a sense that there will be a need to push for what we get and be quite proactive about moving things forward. It’s ‘pushy parent’ time! Our first visit to the paediatrician gave me a taste of this.
Both our sons were referred to the paediatrician. The eldest’s teacher had identified traits in him that she felt were indicative of autism or aspergers (the padiatrician dismissed this, although my wife and the teacher still have their suspicions, but that’s for another blog). Getting an appointment for them both together caused some confusion and several phone calls but was eventually arranged.
The boys were seen together in a small consultation room and we chatted with the doctor firstly about the eldest son. By the time we got onto B, both boys were getting impatient so, I guess, things were hurried on a little. Although noncommital, the doctor concurred that autism was ‘likely’ and told us that B would be referred to an autism assessment organisation.
However, as we were leaving, the doctor, having consulted her superior, caught up with us (in the corridor) and informed us that they had changed their mind. B was too young for that particular organisation to be properly involved. Instead, we would be seen again in 4 months time. In hindsight we should have questioned this but instead we accepted it. At the time I think we were so overwhelmed and busy dealing with bored kids that we just went with it. I regret this now.
Whilst I understand that the particular organisation may have been unsuitable, I do feel like we were cheated out of getting the support we needed. How does a child get support at a pre-school age? Is it that B didn’t seem autistic enough? I wish I’d stood my ground or at least asked more questions, but like I said, we were still taking it all in and hey, I’m no doctor. I trust their professional advice.
To make things worse, when the appointment came through it was for May or June which was much longer than 4 months. The thing is, B is due to start school in September. We have a great many concerns about his ability to cope and therefore want to be as well prepared and supported as possible. If it is June before the next appointment, that creates a very small timescale for preparing adequately for the start of B’s school life.
A couple of weeks later, after a particularly difficult week, my wife cried down the phone to the paediatrician’s receptionist and manged to get an appointment for early March. We are much happier with this, although quite anxious about what will happen. The big fear is that we will hear the same thing again. What we want is a diagnosis. Then we can move on, in whatever direction the diagnosis sends us.
So that’s my taster of some of the difficulties we may face ahead of us. Generally, the support we have had so far has been very good. But I do wonder what the future holds, and whether I will be that parent complaining about the difficulties I have had in being heard and getting the support needed.