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SN children

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

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Original poster

Third child with possible SN - DLA

25 replies

2boysnamedR · 05/07/2016 15:54

I have four children. Ds2 has dyspraxia and Lang disorder, ds3 is autistic in a ASD school. Nursary was concerned about ds1 who is about to turn two. She been seen by pead and portage. Things aren't looking good.

When can you claim DLA from? Is it two? I think that's when I claimed for ds3. I don't want to think about what's wrong or even needing DLA but it's a two year wait for SLT and over two years for OT so if if she has got autism then the money would be handy for private therapy.

Can't belive this is happening. I think I need to start therapy as I can't see how I will cope. I didn't know my ds3 had SEN until I was past 30 weeks pregnant with ds1.

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zzzzz · 05/07/2016 16:05

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Original poster

2boysnamedR · 05/07/2016 16:10

Ds1 is NT - well as NT as my kids get, ds2 is the dyspraxic tribunal one, ds3 has autism and my baby girl is dd1. Dd is hard to type after three sons.

I am so sad. Good job SS aren't around anymore as jumping off a bridge looks pretty appealing right now

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zzzzz · 05/07/2016 17:32

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Original poster

2boysnamedR · 05/07/2016 20:02

Everything was nice and calm. I was just feeling like a boring parent - not a Sen parent after many many years and now this.
Hopefully dd will talk soon. I can't face another round of silence.

OP posts:

youarenotkiddingme · 06/07/2016 07:08

It's true that the older the child the easier it is to claim but where you have evidence of needs and a supporting statement it makes it easier.

coffeemachine · 06/07/2016 07:33

I guess as a Dla oldie you know about the Cerebra guide?

its really about evidencing extra care and support needs and a 2 year old with (I guess) suspected ASD does need lots more help than a child without. I have done both and it thinking back it was astonishing how much easier things were with Dd2 (NT) as compared to Dd1 (ASD) even when they were only toddlers.

you are under paed and should be able to evidence things.

zzzzz · 06/07/2016 07:41

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Msqueen33 · 06/07/2016 09:45

Big hugs. Two out of three of my girls have autism. Three year old also has a complex speech disorder and coeliac. Life at home is a riot. I put in for dla when she was two. Check with your council but if you can a good rate of dla from middle upwards it can help with nursery costs. The toddler years are a nightmare with asd. When people say the toddler years are hard with an nt child I'm tempted to laugh (sounds bitter doesn't it) but asd as made it so much harder. Doesn't help she's non verbal. Sending hugs 🍷 and 🍫 X

Original poster

2boysnamedR · 06/07/2016 12:49

Thanks. I'm going to phone my careers support today to see if they think it's worth claiming now or if I should wait.

I have no one to talk to. All the family are in denial about ds and he's 4.5 and non verbal! No one ever talks about it, it's totally bizarre.

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Msqueen33 · 06/07/2016 16:15

That must be really hard. My youngest is three and non verbal and that's hard enough but I can lean slightly on my mum (though it upsets her that two of the girls have autism). i read an interesting article on people that are sensory thinkers and communicate through their senses. That's really bizarre no one mentions it at all x

Original poster

2boysnamedR · 06/07/2016 16:42

It is. It's like a ten tone elephant in the room. Ds3 has extreme sensory issues, can't talk at all, isn't potty trained. We told the family via email (mil and BIL live abroad) FIL and mil ignored it and BIL said he's fine. Whatever, I don't have headspace that level of weird. So ds could be barrel rolling for 20 metres on a trip to legoland ( one of the very few places he is allowed out of his buggy - he's got a blue badge) and we just don't mention why even though it's not something they would ignore if it was anyone else along with the blue badge....
My mum is better but I'm pretty sure she has some serious emotional issues ( Apple - tree kind of thing)
It's just too much to bear some days.
If mil heard a friends child had ASD she is te type who would cry, say isn't it awful etc, posts about ASD on FB yet ds is invisible to her.
So I guess she will start politely ignoring dd soon.
I wonder if it's a selective thing and she would notice if I dyed my hair pink. Possibly not.

OP posts:

MeirAya · 07/07/2016 22:26

Sorry it's feeling like Groundhog Day 2boys.

If it's anything like I was with ds2, the depression came more from the mental prospect of (constant long pointless) arguments with services, than the 'issues' themselves.

I would put the DLA application in now. You can get care component from infancy (from memory, it's 3 months old so they can say its been 'longterm'). Mobility high rate is from 3y and low rate is from 5y.

There'll be plenty of evidence providing nursery are happy to write something. It'll possibly only take a week or two for GP or HV to write to paediatrics, and you can enclose a copy of that letter too. Plus if you self refer her to SLT/OT, you can send off copies of the referral forms.

MeirAya · 07/07/2016 22:28

Plus if she gets a magic cure, or you are found to have been imagining things, you can ring DWP and say stop sending us £, she's ok now.

MeirAya · 07/07/2016 22:31

And I presume you'll have something vague written down from paed & portage already??

Original poster

2boysnamedR · 08/07/2016 17:36

She has been referred to SLT and ent. I have the pead report and portage appointment letter. Ds3 got high rate care and his blue badge when he turned three - sigh.

I talked to careers support who think I should presume it's fine until it's not. Now I'm studying her again like a hawk and finding her extremely hard work which is such a shame.

I am going to start her a folder and once it's all together if it looks bleak ( I can't really face what the pead has written) I will start a DLA form. She sees portage again in September and the Pead in November. Also the early years improvement officer will see her next week. If either portage confirm she needs to stay on their books or the pead asks to see her after November I can be ready to send it off.

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MeirAya · 08/07/2016 22:21

She could have a mild-moderate special developmental need right now (which you'll already be addressing with lots of expert additional care/mother-provided-therapy)

But then make fast enough progress that by school age she neither needs nor qualifies for a diagnosis. At which point you give back the DLA, and see how she goes, only coming back into the system later if she seems to need it

MeirAya · 08/07/2016 22:26

Neighbours big dc had language unit nursery, statement right through school, couldn't write/read well, social stuff was big issue, struggled with English/maths GCSE ...

Then got to uni via NVQs, thrived with disabled student provisions, got a job. Did well but missed academics so looked into more study. And has just finished Masters degree from Russell Group Uni

Original poster

2boysnamedR · 08/07/2016 22:39

That's lovely to hear thank you. I think that because my son has been in ASD nusery and starts ASD school in September it seems so bleak right now. He's at the very lowest end of the spectrum. Dd was playing row row row your boat with her dolly yesterday singing to it. I can't see how she could be autistic. Maybe I'm blind to it all now.

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MeirAya · 08/07/2016 22:51

is she anything like ds1 or ds2?

Original poster

2boysnamedR · 09/07/2016 11:17

I want to say no, but if I'm honest she does have the triad of traits.
But personality wise no. Mind you ds2 was and still is my silent shadow. Always just behind me where as ds3 is more of a loud ( in a non talking way) ninja. Never by my side. So they are also very different.
Dd likes to spin until she falls, hardly has any words ( 7 maybe) like repetitive play. Very very needing and demanding but of tens doesn't really want the thing she screams for.
But she does interact with me like I'm a person, she shares things with me ( I think?)
She isn't at all like her peers. But she might be just a few months behind them. She is two in August.

OP posts:

MeirAya · 10/07/2016 17:52

So- maybe she has ASD, or broader phenotype + a bit of language delay

Or she's going to be Theresa May.

No wonder you're

Original poster

2boysnamedR · 10/07/2016 21:45

I wouldn't have been worried if nursery hadn't flagged her needs up.

I was waiting for the pead or portage to laugh me off. But that didn't happen. I'm still hoping that there's a strong chance that people are being cautious because of her brothers

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MeirAya · 11/07/2016 13:28

Diagnosis (or lack therof) doesn't link all that well with outcome- whichever side of the ASD cut-off she sits, the important thing is that her individual strengths and various challenges get the right input at the right time .

It's reasonable for them to be cautious because of the combination of a) the brothers and b) the current difficulties.

elliejjtiny · 12/07/2016 01:29

hugs. I understand. I have 5 boys with different needs and I've had the "oh he's fine" comments from various family members that make me want to scream. My youngest was 2 in June and I would bet money on him having ASD although a lot of people think I'm wrong.

Original poster

2boysnamedR · 12/07/2016 09:41

She's just got loads of food out of the freezer the little minx! I have all her paperwork in one folder now. She is two in a few weeks and that's made me realise she is behind on her language but that could be because she growing up with two brothers who have language disorders and a brother who sits in his room most of the day!
Nursery have moved her up a room and they haven't said any more about who they called in. So just trying to be positive now until September. If anything is amiss it's going to be jumped on ASAP. The worse possible outcome is that there something wrong but it gets overlooked like my dyspraxic son.
Also portage reminded me that unless you get reffered before five it's incredibly hard to see a pead here. I have been asking for a year for my eldest to be seen and dispite some solid evidence and my gps concerns he never got a appointment

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