I had a rather awful meeting with D’s OT assistant on Tuesday. It was meant to be with the OT herself but she phoned in sick five minutes after (yes, after) the meeting had been due to start.
Before I start, obviously this is only our experience. There are some wonderful, empathetic OTs helping special needs children and their families, ours – I would hope – is in the minority.
Our meeting was one that had been due to take place in July 2012 and the report we discussed was one that was written in July (following a meeting in June) but we only received in December 2012. This followed discussions at D’s statement review querying where the report was. So, we hadn’t received it, nor had school (you can draw your own conclusions from that).
I was apprehensive about this meeting prior to it because at the June meeting, the OT’s first words to me were “if you do not let her walk, we will not be helping her”. Let? And it was not said in a “how can we help D?” way, it was demanding and “it’s my way or the highway”. She did not take into account D’s severe anxieties and when I said that she does walk when relaxed and comfortable but when anxieties take over, the buggy is a safe place, OT suggested that D has a “safe hat” instead. I said I would consider it in the future.
Anyway, the report came out (eventually). Very critical. The insinuation was that I force her to use the buggy, that she has no anxieties in school so why should she have outdoors? That there is “no reason noted to use buggy to and from school”.
I went into the meeting on Tuesday feeling strong and confident that I was going to voice our concerns, primarily that:
The buggy is used because of D’s severe stranger anxieties and the fact I don’t drive. If we didn’t have a buggy, I would not get anywhere.
If I forced D to walk – remembering we have to go to T’s school first – she would be bolting everywhere. She cannot tolerate strangers in front/behind/alongside her. Not an ideal scenario walking towards a busy mainstream school. Yes, she does get stared at, but there would be far more if she was bolting across the road.
When D bolts, it’s sudden and fast. I only just prevented her from bolting in front of a bus once, probably one of the most scary moments ever. Thankfully the bus was slowing down coming up to a roundabout.
So, we started going through the report, but the feedback we were constantly getting was “she’s fine in school, she walks about, there’s no problem”.
And then the questions started:
Where did the buggy come from?
Your paediatric doctor referred you to the Wheelchair clinic?
Who was this, when was this, where was she based?
Do you access extra-curricular activities for D? What? When?
The inference being over-protective mum.
I started saying that my priority is to keep D safe. Of course I’d like nothing more than D to be a girl who happily skips home alongside me, not worried about her anxieties, an NT child…but the tears started, because I wasn’t being listened to and it was frustrating, very frustrating.
The additional things I’d wanted to say:
People who bring their children to school by car and bus aren’t criticised.
I see other parents at the weekend, with their autistic children in SN buggies, I doubt – because they are not seen using one – they are criticised.
We get to a set point before arriving in the school grounds that D knows she gets out to walk and similarly going home. Of course if she wants to walk further she can (I don’t force her) but as I’m constantly risk-assessing I will ask her to walk holding my hand/arm.
So, Hubbie and I left the meeting feeling like we’d got no further really and that once again, because you can’t see autism or related anxieties, they’re not being accounted for.
And this is a statemented child we’re talking about.
We have another meeting in two weeks. I’m formally documenting my concerns before then but I really can’t see the next one going any better.
But I’m going to try and go in with an open mind…and not cry!