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

I might sound stupid, but would it be worse for DD to be assessed and 'fail' than not be assessed at all?

60 replies

lougle · 18/10/2016 22:51

DD2 is now 9. Huge back story but as some will remember, I first raised concerns re. ASD in year 1 (although notices traits in preschool onwards), DD2 fell apart in school 1, lots of illness and absence, I was virtually accused of FII, so I moved her to school 2. Saw paed who referred to SALT.

She did ok for 1 term of school 2, then fell apart in transition to year 2 and despite their efforts, couldn't cope. SALT assessed and said she had some pragmatic language difficultly but it wasn't affecting her. OT found her 'average', but with 17th centile for some things and 97th percentile for others. Noted sensory issues. After falling apart at school 2, I withdrew to HE.

HE was ok. But didn't help her to address her difficulties. So we tried again and found a small school (100 children). She's been there since start of year 3 with 100% attendance.

She's now year 5. School 3 HT recognised her ASD ('aspergers') traits early on and phrased things in very ASD friendly language (e.g. 'we know DD2 doesn't like change. We know she likes clear expectations. We know she takes things very literally...). She has now, in year 5, gone a step further and said that DD2 will struggle in secondary school and, when I asked, agreed that getting her assessed would be beneficial and that she would give written support if necessary.

I've spent so long being disbelieved that I'm frightened that I'll get her to the point of assessment and then they'll say it's all in my head Sad

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lougle · 03/11/2016 10:40

No, but in my email I've stated 'with support from her school' and I've cc'd the SENCO (I figured that would flag that school are aware of the referral). I've also included a 'school have noticed the following' section in the reasons for referral.

The CAMHS helpline lady said that if my referral triggers enough concern to warrant screening forms (I reckon it should because I tried to hit the diagnostic criteria with my examples without being completely obvious) then the school will get a set to fill in.

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youarenotkiddingme · 03/11/2016 18:39

Glad you've jumped the first hurdle - hope they stick to the 2 weeks and then you can get it all going in the new year.

Lord knows you've been waiting long enough!

lougle · 24/11/2016 15:38

Update: I got impatient. It's now 3 weeks after sending the forms in and they said that we'd hear something within 2 weeks. So I phoned the helpline and asked if they'd got her referral, explaining that I was a bit anxious.

She has been triaged into the 'needing more information' group. So we will be getting forms to fill in along with school. I just hope that this is the start of her getting the help she needs.

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notgivingin789 · 24/11/2016 18:24

OP I can totally relate.

I remember when DS was 2 and a half, I was at the speech therapist's office and she told me "everything seems fine, do you have any concerns?". Right there, I was thinking, should I mention my concerns to the speech therapist? Should I mention that I think he has ASD and other things? Should I wait till he seems to get worse and then pursue an assessment of some kind. Luckily I thought no, as I wanted DS to get hope and I replied to the speech therapist, told her my concerns and she the refereed me to see the developmental paediatrician.

In hindsight OP, it was the best thing and like zzzz said you well feel your stomach churning (?). It was agony OP, the wait, DS reports kept telling me what he wasn't doing/good at, I was worried. I'm so glad I got through that process in regards to my emotional well being. Don't wait, knowledge is power, the more you know, the more you can investigate and search for ways you can help with your DD.

Good luck Smile

notgivingin789 · 24/11/2016 18:25

Also, I've heard that it's harder get support when the child gets older ?! Don't know if that's true. But that's what I heard.

notgivingin789 · 24/11/2016 18:27

Lougle it's you!! I didn't even read your OP username. How have you been !!! I haven't seen you in a while in that boards.

youarenotkiddingme · 24/11/2016 21:22

Glad the ball is rolling in the right direction Brew

lougle · 25/11/2016 00:17

Smile have you namechanged, notgiving? It has been a while. DD1 is 11 next week!!!

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notgivingin789 · 27/11/2016 21:42

Yes I have name changed Lougle due to the hacking issue. How come you haven't been on the special needs board for a while ?

lougle · 27/11/2016 22:10

I just found it hard to keep up at the pub and life was busy Smile I'm back a bit more now though.

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