Hi, it's EHCP review time again and I've just read the paperwork. Anyone else ever felt completely demoralised and like they are just a crap parent after reading this stuff?
I know the whole point is to identify the needs. But they don't in a way that makes it sound like it's his parenting that's the issue and not his disabilities. They keep making a point about "needs supporting and encouraging more to develop independence skills at home. Still requires parent to brush teeth."
Thing is they are just going off what he says, not talking to us, and have absolutely no context because this boy is really difficult to get a full, factual sentence out of bless him! And he doesn't understand his needs himself!
For context, he is almost 15. Was born at 28 weeks, had brain bleeds, pda almost requiring surgery and so was on breathing support for 6 months, and has had issues with muscle tone since birth which meant prolonged tube feeding and not being able to take solids until he was a year old. He is also diagnosed with ADHD, ASD, epilepsy, global delays, learning disabilities,dyspraxic tendencies and hEDS.
All of this has impacted on his toothbrushing. He got his first tooth at 13 months, and we've worked so hard on brushing ever since. He was terrified of it after all those months of invasive oxygen and feeding support. So every day just to brush I'd have to bath him, wrap him in a towel, sing all his favourite nursery rhymes and very gently introduce toothbrushing so as he didn't freak out. Using a flannel first, then a soft finger brush, basically working our way up to an electric toothbrush now. We did 3 monthly dental visits with a paediatric dentist from age 1 , where he'd just sit in the chair with us while they looked at our teeth, let him have a go on the chair....just really slowly introducing the dentist so as not to be scary. Was ages before he let them look. He also has weak enamel from prematurity and so he has regular checks and prescription paste . It's really important that his teeth are properly brushed because of this.
That's the history and context of his dental needs. So they've asked him about how he can care for himself and he's said oh I still have help to brush my teeth. No more context than that as he doesn't get why really, or can't verbalise it. He has learning delays and is only functioning at the level of a 7 year old according to their own tests. So it is true....he does have help. He brushes them. But because he has the needs he has with executive functioning , dyspraxia, sensory issues, muscle tone etc he doesn't do a particularly great job. He misses bits and doesn't realise. And so once he's finished we will show him where he's missed , hand over hand go back over with him to make sure they are clean. You know, so his already weak enamel doesn't erode, as I'm sure they'd have a lot to say about that too! Doesn't seem unreasonable to me. Yet it's said in such a patronising way , he needs support to achieve independence with his personal hygiene at home. He's immature compared to his peers . Like we just aren't bothering.
Lady, if you knew the level of support and the number of years it has taken to achieve what he can now, you'd feel ashamed saying it in the way you have! Like we aren't trying. This kid sets his own alarm, gets up, makes his breakfast (except his drink as I have to add his bowel medication of a morning). He makes his bed, packs his bag, gets washed and dressed. He is outside at the time he knows the bus comes. Yes, he struggles with buttons, and brushing his hair and teeth properly. I've made uniform adaptations so he doesn't struggle changing at school and gets to practise at home, so there's no pressure or embarrassment. None of that means we aren't trying , that he isn't. It just means I cannot parent the ridiculously hypermobile fingers and dyspraxia out of him, and I can't make his progress any faster, because we are all really trying already!!
This comment along with a few others about how he's not as mature as his peers and he's less active than them has maddened me. Why we comparing him anyway? The kid has tons of issues. He's being investigated for both his legs twisting out at 40° on top of everything else and it hurts him to walk. On top of hEDS, epilepsy , autism and ADHD. I mean I'm sure you wouldn't feel like being active if you were in pain and exhausted! Give him, and us, a break!!
His school was for autistic children who were capable physically and academically , but just couldn't handle the mainstream environment, up until the year he joined. It only then became a school for children with moderate learning disabilities. And I just don't think they get him at all. They don't realise how complex his conditions make him when combined, or how it affects him. They just seem to think they can teach and we can parent it out of him . I mean they are sending him to career meetings FFS, when he's functioning at age 7! Well, he might always have some struggles. I am not underestimating him, he might fly given time....but also, he might not. And right now this is where he is at so this is where we are meeting him and gently encouraging while accepting he has limitations. I don't feel this is wrong. At least not until EHCP review time, when they word it as though it's all a parenting issue and it just makes me angry and depressed every time!
Anyway sorry for long rant. I needed to get that out!