Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

I need some advice please!

12 replies

KatyCustard · 17/03/2012 12:53

I was wondering if any of you could help me. I don't want to be dishonest or hide anything from anyone so I will tell you right now what my job is - I am on maternity leave from an LA where I am a case officer for the SEN team. (I write statements etc.). I know some of you on here have had truly appalling experiences with LAs which horrify me tbh. It's a really horrible job, and one which I went into very nieve, I had no idea the statementing process was so difficult for parents, and have no intention of staying in this field. The reason I'm telling you this because although I have knowledge of SEN from my teaching days and from my job now, this is me as a mum writing. But inevitably my knowledge of the "system" is going to colour my judegement and I feel I should be honest about this from the start... phew got that bit out of the way.

I have a nearly eight year old DD1 and a four month old DD2. I've always worried about DD1, but having DD2 has begun to confirm a few things for me and I would really appreciate your views on this.

As a baby she never really engaged. Being my first I didn't really know what was normal and what wasn't but DD2 is just so different. She makes eye contact and smiles and laughs and I just don't remember DD1 being like that at all.

As a toddler she didn't really play with toys, and even now has loads of things like Barbies and Sylvanian Families she has never touched. She spends ALL her time either playing the piano, just making up tunes, (she's very good) or dancing to music (again, she's very good). She was a very late talker - she was well past her third birthday when she would speak in short sentences. However she sounds very articulate now. This is great until you listen to the content of what she says, and then you realise it's very muddled. She is in Year 3 now, and last term they were looking at the Egyptians. She wanted to take in the piece of volcanic rock we have, and eventually established that they were doing pyramids that week - she was confused between the two. She often makes up words for things, and does things like call lorries "trollies" and on the rare occasion she plays "schools" in her bedroom I hear her using lots of made up words, so much so that it sounds like a baby babbling. She has no friends at school, but seems to spend all her time falling out with the other girls. She frequently tells me she hates school because no-one likes her. However if you ask her who her best friends are she will name three girls at our church who are in their early teens and who are really not interested in her, but she follows them round obsesively, compeletly ignoring children of her own age.
She has real problems empathising with anyone, has real trouble falling asleep and despite having a really solid bedtime routine is frequently still awake in bed at 10.30, worrying about things. I have often wondered about her being on the spectrum, but there are some things that don't fit - she is very disorganised for example. My DH has always resisted any kind of advice or dx as he doesn't want her to have a label. I understand that but feel that the older she gets the more difficult she finds life. In 18 months she will be off to Middle School, which is the system we have round here. I'm already worried as the middle school she would go to is like a mini secondary school.

I know that many of you are facing much MUCH worse than this, but I wondered if any of you had a daughter that sounded a little like this, and what, if anything, you have done to help her. Most of the time she is a happy child, which is the most important thing, but she gets so worried about life and it seems to be gettin worse.

Thanks in advance.

OP posts:
WetAugust · 17/03/2012 13:42

Hi
I didn't want you to think we were ignoring you because you work for the 'Dark Side' Grin

You have 3 choices:

  1. you can ignore it and hope things get better (the approach your DH appears to prefer)
  2. you can raise your concerns with your GP and ask for a referral to a developmental paediatrician
  3. you can wait for school to raise their own concerns (which they may or may not do because as you know, additional suuport = extra cost to them). The school would probably send you down the Community Paediatrician route, most of whom are as useless as a chocolate teapot.

As you know, support is not based on dx or label. You know sufficient about the system to be able to form your own opinion on what help would benefit her. If that help can be provided by school - great. Otherwise you're looking at a statutory assessment request, probably initiated by yourself.

You may find yourself in the unique position of writing your own DD's statement Grin

lisad123 · 17/03/2012 13:43

Asd in high functioning children is often not dx till 7-8years. This is the point the differences in them become clearer.
Personal she sounds like a mix of my two girls who both have dx of autism.
I would start writing your concerns down in a list and taken it to GP and ask for federal to developmental pead. I would also start a daily diary of her behaviours because you will need this for assessment. I would talk to school and discuss your concerns, be prepared that they haven't likely noticed. Get a few books on girls with Asd and read them. Get to grips with what might be Asd and what might just be about being an 8 year old girl.
Maybe consider Pre planning where possible with dd, it helps lower anxiety levels and trust me they worry about things we don't even consider.
Dx isn't something to go into lightly but just know without it the road to help is very hard.

zzzzz · 17/03/2012 14:17

This reply has been deleted

Message withdrawn at poster's request.

Ineedalife · 17/03/2012 15:23

Someone on here told me to think of it as a signpost not a label.

The signpost can point you and your Dd in the right direction for support.

My Dd3 is 9 and has recently been dx'ed with ASD, she is high functioning. She is not organised. She needs a visual timetable to help her get ready for school, she gets distracted by her own important things when she is supposed to be doing other [boring] things, like getting dressedGrin.

She is absolutely lovely and impossible at the same time. She can make me laugh and cry at the same time.

She really needs her "lablel" to help her cope at school, she gets support from the SEN team at her fab, inclusive school.

She is currently in a social skills group for dealing with emotions and they are also working with her maintaining freindship skills.

Having been thorugh the DX process with Dd3 I would be very surprised if any body could be wrongly dx'ed, it is a very long, laborious and detailed process, which you can stop at any time.

Good luckSmile.

ArthurPewty · 17/03/2012 15:26

This reply has been deleted

Message withdrawn at poster's request.

zzzzz · 17/03/2012 15:39

This reply has been deleted

Message withdrawn at poster's request.

KatyCustard · 17/03/2012 15:51

Thank you all for being kind and not flaming me! And also for your advice. I am really struggling with this as my DH is so anti any kind of DX, and yes, as some of you have mentioned, the school have told me "she's not one of the ones they worry about." With my teacher hat on their attitude really bugs me, as so many of the things she needs for support can be done with just plain good practice - a class visual timetable benefits everyone for example.

I also get frustrated with friends when I try and discuss it with them who just put her down as quirky - I am very afraid that I could be seen as looking for problems where there are none. My best friend's DD has a dx of asd but presents very differently to my own DH and she has a supportive DH. They have gone through hell and back, (tribunal, falling out big time with the school etc.) to get a dx and then an SA. I know very well if I go down this route exactly what I'm letting myself in for, and also know that I need DH on board. (He's a lovely supportive husband in all other respcts BTW!)

Feeling really blue about it today. But also glad that none of you that have replied have thought I was over thinking the way she is. Thank you!

zzzzz as for your plans to over throw the system... I'm right on board. It stinks, quite frankly.

OP posts:
ArthurPewty · 17/03/2012 15:56

This reply has been deleted

Message withdrawn at poster's request.

WetAugust · 17/03/2012 16:04

The sad thing is that at age 8 'quirky' behaviour may just be overlooked.

If she gets to 13 / 14 and her friends are 'growing up' and she's still quirky her behaviour will start to stand out and she could be a target for bullies etc. If she's disorhanised now then how will she cope in secondary school?

You've already identified that she's a visual learner. If she did have an assessment more could be tailored to her way of thinking (or as you call it in your trade 'finely garded teaching'). Also, if she does have ASD, she's missing out on social stories which are important in helping her understand the world.

Not all ASD children present the same way. Insomnia and anxiety are common features, as is an inability to make friends within your own peer group.

I can see why people don't want 'labels' but personally I think it's the first step towards understanding why your child is the way they are and is essential to secure the support they require.

WetAugust · 17/03/2012 16:04

doh! graded

Ineedalife · 17/03/2012 16:18

My DP wasn't really on board at first katy, Dd3 was becoming very distressed at school and was losing weight and was more clingy than ever. he came with me to the first couple of appointments and then he stopped coming and just said he was leaving it to me to decide.

In the end CAMHS insisted that he attend the appointments so that they could get a balanced view of what things were like.

As it turned out we answered pretty much all their questions the same [which surprised me].

IME, men do deal with things differently, they seem much more willing to sit back and see what happens.

I think as you have worked in schools you should try to explain to him what will happen if she needs support but doesn't get any.

Remember, you are your DD's advocate, she needs you to speak up for her.

Good luckSmile

lisad123 · 17/03/2012 18:37

Dh wasn't sure on dd1 either, he said he thought she was fine just a little different. Once proffessionals agreed he started to accept it. He cried when we got dx as he really wanted me to be wrong Sad
Dd2 was clearer and he jumped straight aboard.

New posts on this thread. Refresh page