Just that really.....when I take 10 year old DS to any appointment, Paediatrician, ENT, A&E, etc, HE is asked what the problem is, not me.
This would be fine, but DS is diagnosed with a Severe Phonological Speech Disorder, with articulation difficulties and a nasal quality. It is well acknowledged and documented in his notes, he is having weekly speech therapy, and has recently been given a communication book. He also has Ehlers Danlos Syndrome.
Last week he had an ENT appointment to rule out any missed causes because his speech is not improving the way the speech therapist feels it should. (He had a previous hearing test a couple of years ago, where I was told his hearing was borderline for needing any help, still on waiting list for detailed hearing test).
I had obviously explained to DS what the appointment was for, they'd look in his mouth and ears, etc., probably ask him about swallowing, etc., run through what we'd say, ie. speech therapy wanted to get him checked over.
So, in we go, the consultant refuses to speak to me, and asks DS 'what is wrong with your ears?'.....cue DS looking confused, not knowing what to say because as far as we know there is nothing wrong with his ears.
Next question is 'which ear is the worst, left or right?'.....again DS flounders and looks to me to answer because as far as we know, both ears are fine, he doesn't have a 'good' ear.
Because I then HAD to insist that the consultant listened to me about DS's speech, he didn't ask DS any of the questions we had rehearsed, didn't let him use his communication book and then got the idea that DS WOULD not speak, not COULD not speak. It is not a behavioural problem, DS is shy because people do not understand him, this has dented his confidence, but if people are patient, then he will speak and I repeat what he says to translate.
After looking at DS's throat, palate, etc., with a camera, the consultant found nothing wrong at all, but seemed surprised that DS was upset.....he was upset because the camera had hurt him and he was frustrated at not being able to speak up for himself.
I understand that the doctors will need to hear DS speak to hear the problems he has, but I wish they would just let me explain the background first, and make sure that they have read the notes - it feels like DS has to prove how bad his speech is each time he has an appointment. (There are a couple of regular ones we go to such as orthotics where the chap we see is fantastic with DS)
Does any one else go through this? Is it normal practice? Even when DS broke his arm, he was expected to give his own name and address, etc. which he can't do at the best of times, let alone when he is in agony 