We also took receipt of another walker on Monday.
The physio and rep went to Seth's nursery so I only saw it when I picked him up. It seems a little high but it's the best one we've had so far, I think. We've got it on trial. We had a visit from our SENCO (pre school teacher)on Thursday and she seemed pretty unimpressed with it. Wanted to know what questions I had asked about it and suddenly I felt at fault (again) because the physio hadn't phoned me to discuss it at all. The physio did in fact phone on Friday to see how we were getting on with it and the whole time I was thinking 'what questions should I be asking'? She's the expert and I feel that I should be led by her whether it's suitable for Seth, or not. It's the smallest size they go so while it it a little high, he will grow into it and she tells me that she's spent a long time researching his options. I did say that the knobbly bits at the front were a risk because Seth drops his head forward and doesn't notice when there might be things to smash his face into and I wasn't sure if adding handles would help because that would be a bigger target for him. I've covered up the knobbly bits with foam pipe covering which make them safe and she seemed satisfied with that. Should I have been more demanding and asked for something from her to cover it? I'm still waiting for a foam wedge from her that Seth is supposed to be using as part of his physio excercises so I'm reluctant to start asking for anything more complicated!
Anyway, that was the last appointment I shall have with the pre school teacher. Because Seth starts Fairfields (special education school) in January for his pre-school year and they will take over everything - speech and language, physio, pre-school stuff. It'll be great cos everything will be coordinated and he'll get the therapies much more frequently. I've had to complete an evaluation of the service that the pre school teacher has provided. Its difficult to complete because I think I respected her knowledge and expertise over everyone else I've dealt with but I just didn't get on with her on a personal level and the nursery dreaded every one of her visits so I don't feel she built up a very good relationship with me or them. Craig found her great though and really helpful on a personal level so I know with me it was just a personality clash which I need to separate out when I'm evaluating the service. Its hard to be dispassionate though when it's about someone who came to the house to talk about my son. I also realise that part of my anger at the professionals we are involved with is due to having something I can be angry about and fight. I can't do anything about Seth having these difficulties and so I think sometimes it's about having something tangible to fight. Of course part of it is their lack of communication and working with colleagues! Grr.
This sounds so familiar.
ReplyDeleteWe learned over time that we are the experts on Ashley as you are on Seth. He has a condition which makes him similar to some other kids but he is unique and you guys know him best.
But sometimes you have to let them make the decisions, as you did with the frame.
It's up to you how much influence you have and when.
I concur with dderbydave...I would add that the "fight" in you be reserved for the education process. You educating yourself and paying attention to little details. About Seth's head flopping forward, have you thought of incorporating a soft neck brace, the kind any pharmacy carries, just for those sessions. The support is minimal so it wouldn't distract from his self sufficiency but might give him more confidence in certain situations.
ReplyDeleteBe creative because as you are learning the real help for Seth exists (as far as all these motor skills are concerned) when you and the "professionals" work it out together.