Ok, apologies as I don't really know where to start with this and it could well turn in to an essay of mammoth proportions!! I'll start at the beginning...
I'm writing about my daughter, she was 4 at the end of August. When I was pregnant she was diagnosed with something called Hydrops which meant she had fluid in her body where it shouldn't have been, in her case around her lungs and she had skin oedema round her chest, neck and head. She was in NICU for 2 weeks but made a full recovery despite being given low odds of survival when she was diagnosed. Anyway, we were told she might have development problems and so we had follow up appointments with the paediatricians but they discharged her before she was a year old so we thought everything was fine. She was slightly slower than average meeting her milestones, didn't walk until she was 18 months, but other than that seemed pretty 'normal'.
So, started a daycare/nursery when she was a year old and was fine, apart from a bit of frustration, usual tantrums etc and nobody expressed any concerns. Fast forward a couple of years and she started a pre-school setting just after she had turned 3 (birthday was august 2013, started pre-school in the september). Anyway, they very quickly raised concerns about her. They mainly focused on her speech which was very obviously delayed (we knew this but just had the attitude that she was progressing and would get there seeing as she was the youngest in the class) but they were also worried about elements of her behaviour. Basically she refused to do certain tasks and would just 'drop' to the floor... fairly normal you may think given she had just turned 3. However the issue they had is that NOTHING will bring her out of it, not time outs, not incentives, not 'punishments'... nothing! So obviously it makes it frustrating in that you have no control over when she has one of her meltdowns, no way of 'disciplining' her, no way to make her come round to doing what it is you wanted her to do, and quite often no specific trigger (she sometimes does it and you don't know why).
So she 'made it' through most of the year, we had regular meetings with her teachers who were pleased with her speech development (although still behind her peers she was definitely progressing and we saw a lot more at home than they did at school), she also toilet trained during this year, this was something she was late with as just was not ready before.
Towards the end of the year the teachers felt that although she had progressed, they still had the 'behavioural issues' and thought it would be good to get her assessed. So we had the Health Visitor come round and do an assessment, she didn't feel there was any evidence of any sort of 'discorder' but agreed that speech therapy would be worth a visit. The school had requested a meeting with me and the HV so we arranged that for the following week. In the meantime we had seen the speech therapist who said that yes, her speech is delayed but she's progressing and felt that at this stage no actual therapy was needed as long as she continues to progress. We were obviously pleased and headed to the meeting prepared to tell them that neither the HV or speech therapist thought there was anything wrong and that the school needed to find a way forward. Anyway, ended up in them saying a CAF referral would be good in order to help her.
I don't know where to go next with this really, they had someone go in to her school to 'assess' her and he gave the teachers some advice on how to 'handle' her which relied on them giving her a choice so she felt in control and the idea was to prevent the 'strops'. Then it was the summer holidays, during which she was brilliant, was looked after by me, my husband, my mum or my auntie and she was fab, very very few issues, her speech came along brilliantly.
She started reception last thursday and went in fairly well the first two days and they said she'd been fine - we were so chuffed, she had always liked the TA so I thought that maybe it had always been the other teachers that had maybe been part of the problem as we'd suspected. Her behaviour at the weekend at home wasn't great but I put it down to her being tired and it being her big sister's birthday! Then yesterday I got a phone call from school to say that she was "kicking off big style" (direct quote from the office staff member who rang me), she was under the table in the dining hall and was refusing to come out so could I go and help them as they didn't know what to do. It was horrible, I'm not a big fan of the head anyway but her attitude is not helpful. When I got there there was no big scene as I expected, they'd got her out from under the table but she was just stood at the end of another table refusing to sit down whilst a dinner lady stood there trying to 'talk her round'. I sat and spoke to her and once the head had stopped standing over us she sat with me and ate her dinner no problem. Afterwards the head spoke to me in her offiec and asked for "tips" on handling her!
Sorry this really really is long, I think the main things we've noticed with her I will list below, I'm basically just wondering whether (if anyone has got this far!) you think this is maybe just some specific behavioural issues or whether there could be something 'wrong' (for want of a better word:
- her sleep is awful, she is one extreme or the other, either sleeps 12 hours or will be awake for hours (6 hours is her record)
- delayed speech (although it is progressing, still noticebly behind)
- her 'meltdowns' can be very extreme and there is no turning back once she's gone down that route
- is not concerned with what other children are doing, very much focused on her own agenda
- will not follow instructions, particularly at school
- seems to be worse in public, when she has an 'audience' or is put under pressure to talk or respond to someone
- this is a strange one but when somewhere unfamiliar she will wee A LOT, wondering if it's an anxiety thing
- doesn't seem to be any particular triggers to her 'meltdowns' (see dining room incident above)
- no amount of incentives or consequences make any difference to her
- limited social skills with her peers (socialises much better with younger children, my niece is 2.5 and they get on great)
I think I've gone on long enough - I'm just at the end of my tether now, we have an older girl (9) who has never had any problems and a younger girl (18 months) who is also fine and showing no development problems at all.
I just would like some outside input really, people close obviously say things they maybe think I want to hear but I don't know what to do. I'm hoping this referral comes through soon so we can get some clarity from some other professionals.
I am SO sorry this is ridiculously long, appreciate anyone who has actually read this!!
Thanks,
Amy
I'm writing about my daughter, she was 4 at the end of August. When I was pregnant she was diagnosed with something called Hydrops which meant she had fluid in her body where it shouldn't have been, in her case around her lungs and she had skin oedema round her chest, neck and head. She was in NICU for 2 weeks but made a full recovery despite being given low odds of survival when she was diagnosed. Anyway, we were told she might have development problems and so we had follow up appointments with the paediatricians but they discharged her before she was a year old so we thought everything was fine. She was slightly slower than average meeting her milestones, didn't walk until she was 18 months, but other than that seemed pretty 'normal'.
So, started a daycare/nursery when she was a year old and was fine, apart from a bit of frustration, usual tantrums etc and nobody expressed any concerns. Fast forward a couple of years and she started a pre-school setting just after she had turned 3 (birthday was august 2013, started pre-school in the september). Anyway, they very quickly raised concerns about her. They mainly focused on her speech which was very obviously delayed (we knew this but just had the attitude that she was progressing and would get there seeing as she was the youngest in the class) but they were also worried about elements of her behaviour. Basically she refused to do certain tasks and would just 'drop' to the floor... fairly normal you may think given she had just turned 3. However the issue they had is that NOTHING will bring her out of it, not time outs, not incentives, not 'punishments'... nothing! So obviously it makes it frustrating in that you have no control over when she has one of her meltdowns, no way of 'disciplining' her, no way to make her come round to doing what it is you wanted her to do, and quite often no specific trigger (she sometimes does it and you don't know why).
So she 'made it' through most of the year, we had regular meetings with her teachers who were pleased with her speech development (although still behind her peers she was definitely progressing and we saw a lot more at home than they did at school), she also toilet trained during this year, this was something she was late with as just was not ready before.
Towards the end of the year the teachers felt that although she had progressed, they still had the 'behavioural issues' and thought it would be good to get her assessed. So we had the Health Visitor come round and do an assessment, she didn't feel there was any evidence of any sort of 'discorder' but agreed that speech therapy would be worth a visit. The school had requested a meeting with me and the HV so we arranged that for the following week. In the meantime we had seen the speech therapist who said that yes, her speech is delayed but she's progressing and felt that at this stage no actual therapy was needed as long as she continues to progress. We were obviously pleased and headed to the meeting prepared to tell them that neither the HV or speech therapist thought there was anything wrong and that the school needed to find a way forward. Anyway, ended up in them saying a CAF referral would be good in order to help her.
I don't know where to go next with this really, they had someone go in to her school to 'assess' her and he gave the teachers some advice on how to 'handle' her which relied on them giving her a choice so she felt in control and the idea was to prevent the 'strops'. Then it was the summer holidays, during which she was brilliant, was looked after by me, my husband, my mum or my auntie and she was fab, very very few issues, her speech came along brilliantly.
She started reception last thursday and went in fairly well the first two days and they said she'd been fine - we were so chuffed, she had always liked the TA so I thought that maybe it had always been the other teachers that had maybe been part of the problem as we'd suspected. Her behaviour at the weekend at home wasn't great but I put it down to her being tired and it being her big sister's birthday! Then yesterday I got a phone call from school to say that she was "kicking off big style" (direct quote from the office staff member who rang me), she was under the table in the dining hall and was refusing to come out so could I go and help them as they didn't know what to do. It was horrible, I'm not a big fan of the head anyway but her attitude is not helpful. When I got there there was no big scene as I expected, they'd got her out from under the table but she was just stood at the end of another table refusing to sit down whilst a dinner lady stood there trying to 'talk her round'. I sat and spoke to her and once the head had stopped standing over us she sat with me and ate her dinner no problem. Afterwards the head spoke to me in her offiec and asked for "tips" on handling her!
Sorry this really really is long, I think the main things we've noticed with her I will list below, I'm basically just wondering whether (if anyone has got this far!) you think this is maybe just some specific behavioural issues or whether there could be something 'wrong' (for want of a better word:
- her sleep is awful, she is one extreme or the other, either sleeps 12 hours or will be awake for hours (6 hours is her record)
- delayed speech (although it is progressing, still noticebly behind)
- her 'meltdowns' can be very extreme and there is no turning back once she's gone down that route
- is not concerned with what other children are doing, very much focused on her own agenda
- will not follow instructions, particularly at school
- seems to be worse in public, when she has an 'audience' or is put under pressure to talk or respond to someone
- this is a strange one but when somewhere unfamiliar she will wee A LOT, wondering if it's an anxiety thing
- doesn't seem to be any particular triggers to her 'meltdowns' (see dining room incident above)
- no amount of incentives or consequences make any difference to her
- limited social skills with her peers (socialises much better with younger children, my niece is 2.5 and they get on great)
I think I've gone on long enough - I'm just at the end of my tether now, we have an older girl (9) who has never had any problems and a younger girl (18 months) who is also fine and showing no development problems at all.
I just would like some outside input really, people close obviously say things they maybe think I want to hear but I don't know what to do. I'm hoping this referral comes through soon so we can get some clarity from some other professionals.
I am SO sorry this is ridiculously long, appreciate anyone who has actually read this!!
Thanks,
Amy
