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To ask your experience of GDD, ASD AND SPD

(31 Posts)
rabbitheadlights Wed 13-May-20 10:02:07

posting for traffic and I will remove if it's not appropriate to be here but

yesterday ds's portage nursery nurse told us we should apply for dla, until this point I knew ds 23 months had some sort of developmental delay, but I had thought that ds would eventually catch up with his peers. I had purposely stayed away from Google as I have anxiety anyway and Google is not good for it. However the filling in of the forms and some of the things she said have caused me to realise, this is not just simply a delay and that his life is going to look very different to that of his peers and indeed his siblings. 3 things were mentioned GDD which I knew about, ASD which had been mentioned but as possibility and SPD which they seem to believe is his biggest issue.

My question is, in reality what will life look like for him? After reading up on SPD last night im worried, does that mean he is living in a constant state of anxiety!? How do I help him??

OP’s posts: |
roziro Wed 13-May-20 20:40:49

Are you looking for information from other people's experiences that you can then put in your dla form? 😕 Your title and then the content of your post doesn't match. I would be seeking formal assessment of his needs and potential diagnosis first, by camhs/ paediatrics/ wider multi disciplinary team in the first instance, as it sounds like your little one needs assessment and support, given the very wide range of concerns highlighted by portage? (some of which is there for free).

nanbread Wed 13-May-20 20:48:55

I'd think all of the conditions you mention cover such a wide spectrum it is impossible for anyone to say. You could have two children with those same three diagnoses presenting in almost opposite ways. Also no one can predict how things will develop, your child is still very young.

What are the symptoms etc so far?

petermaysawthefuture Wed 13-May-20 20:54:13

DLA isn't based on diagnosis, it's based on care needs. So you'd have to show how much extra care your child needs compared to a child with no additional needs of the same age.

nanbread Wed 13-May-20 20:57:19

DLA isn't based on diagnosis, it's based on care needs. So you'd have to show how much extra care your child needs compared to a child with no additional needs of the same age.

Yes, and based on this I would imagine OP's child to have some very complex additional needs and a significant delay given the age

Daisychainsandglitter Wed 13-May-20 21:19:15

Hi OP,
My DD is 5 and a half and has ASD and SPD. We knew from an early age that there was something unusual about her but it was still a shock to us when age 3 her nursery called a meeting with an educational psychologist to say that they felt she had ASD.
Along with her diagnosis of ASD, has a diagnosis of SPD. Her peadiatrician said at the time that SPD often goes hand in hand with ASD.
She is in year 1 and after a rocky start is very happy at school and is going well. The SPD is managed through a chew necklace in the shape of a Lego block. She wears ear defenders if noises are too loud. She has a very limited beige diet again around texture but she is healthy and we put vitamins in her drinks.
She has a tendency to try and nibble playdoh, slime (which she loves!) and paint crayons so we do have to be vigilant.
A quick google search shows that there are many sensory toys for children and actually in DD's year group (mainstream school) there are a few children who have chew necklaces or sensory toys. Although she certainly has anxieties she is generally a happy child and has come incredibly far in the last couple of years. I just want to reassure you that there is hope for your DS but appreciate that this is a worrying time which is natural as a parent.

roziro Wed 13-May-20 21:46:43

I do appreciate support is needs led not diagnosis led, but dla won't necessarily help you access that support at school etc and I can't understand why you have gone straight from having concerns to looking for money without trying to understand what his needs are and what you and others can do to help. I am sorry to be blunt. But surely if portage was so concerned they would suggest you ask for formal assessment of strengths and needs, as that will help your dc needs be met in nursery and school (in theory!) -not just suggest you apply for dla? It sounds like such a range of difficulties your dc may have- I would be looking for assessment as their recommendations can help you to try new things to help your dc.

Lougle Wed 13-May-20 21:58:29

Generally (and I'm being very general) the gap widens as time goes on with GDD, whereas if there is a specific learning difficulty (e.g. glue ear causes a speech and language delay) then the gap closes over time.

As an example, DD1 was 'flagged' at 2 years 9 months and had a 'spiky profile'. Her delays ranged from 6 months in some areas to 18 months in others. Generally, when she was young, she tracked at about ½ her chronological age. So as a 4 year old she behaved like a 2 year old, 6 year old like a 3 year old, etc. So the gap, although staying consistent, widened.

Now she's 14. In some areas she's a typical teenager. In others, she's like a young child. For example, she accidentally broke a tiny little 'fairy' glitter bottle and cut her thumb yesterday. We got so caught up sorting the cut that it didn't occur to me that she wouldn't do as I asked her and put it in the bin. Today, she came to me with a cut lip. She'd put the broken bottle in her mouth. I never could get to the bottom of why she thought it was a good idea to put a broken bottle in her mouth.

She's grown up in many ways and she's done things that she wasn't deemed capable of. But she still has a need for vigilant supervision because she can't risk assess and she's compulsive.

Lougle Wed 13-May-20 22:02:53

@roziro I don't think that's the case. I think that filling in the forms has made the OP realise that her DS has more global needs than she realised.

I had a similar dawning with DD1. I'd spent ages being told that a) she had no needs, then b) she was just 'immature'. Then she was diagnosed with epilepsy and a brain malformation, with global developmental delay. She got high rate DLA at the age of 3 and that's when it dawned on me that someone else had recognised that she had severe needs. She's at special school and is going to need support in adult life.

Lougle Wed 13-May-20 22:04:35

Also, DLA can be a persuasive factor when applying for assessment of needs - it shows that there is a recognition that the child has higher needs than the typical child of their age.

cantdothisnow1 Wed 13-May-20 22:10:29

I have two children with those diagnoses.

I wasn't particularly aware of their differences when they were young it was apparent in both around the age of 7 in terms of major differences from their peers.

If your child is 23 months then, in order to claim DLA, you need to demonstrate care needs over and above those of non disabled children. I understand this is fairly difficult given that most under 2s need a lot of supervision.

roziro Wed 13-May-20 22:41:36

@lougle That's sort of what I mean though- someone is recognising that her dc has significant needs - which is rare isn't it, as we can often be dismissed!- but why aren't they suggesting further assessment (even alongside DLA) to help towards putting further support in place. I do hope the OP can get the input and support they need for their dc- perhaps by leveraging what portage have said in terms of additional needs and on the basis of their own observations- at least OP has been taken seriously at this relatively early stage.

Lougle Wed 13-May-20 22:53:07

My experience was that even until DD1 got her diagnosis (which was itself a fluke - she only got an MRI because she had an EEG which showed uneven discharges) nobody wanted to admit there was a problem.

At 23 months, needs are largely irrelevant. I mean they're not, of course, but many LAs have an informal system for funding extra support in nursery/ preschool. DD1 had 1 assessment by the area inclusion coordinator when she was 2 years 9 months, and she got immediate authorisation for 5 sessions of 1:1 support per week at preschool. Just like that. I mean, she was a handful. Her attention span was so low that she'd walk across the hall, pick up a paint brush, dip it in paint, draw a stripe up the paper and drop the brush over her shoulder as she walked on.

It was only when she was being assessed for statement that we started to get resistance, with the EP saying she didn't need full supervision. When we drilled down, it was clear that there was no safe time for DD1 to be in a group without support. The EP's report said "I tried to observe from a distance but this proved impossible.' grin DD1 climbed into her lap and played with her earrings.

rabbitheadlights Thu 14-May-20 10:39:55

Sorry guys no I'm looking for ideas on how I best to help him really, and some idea if any of given the right help what life could look like for him in say 5 yes time

OP’s posts: |
Winnipegdreamer Thu 14-May-20 10:41:35

DLA relies on you sending evidence of needs nowadays, we included all of our diagnosis reports

rabbitheadlights Thu 14-May-20 10:44:50

@roziro I'm not looking for money!!! How dare you?! My post says I want to understand if he is in a constant state of anxiety? How to help him and also to ask what his life may look like, the fact that they told me to apply for DLA, is what prompted it, it would never have occured to me, but in order for his nursery to be able to acces funding to give him extra support, he needs to be in receipt of DLA!!

OP’s posts: |
petermaysawthefuture Thu 14-May-20 10:53:15

My apologies for my first post about DLA, I thought one of your questions was in regards to claiming in without an official diagnosis.
However, I'm not 100% sure when it comes to nursery settings but in a school age child they do not need to have an official diagnosis nor be in receipt of DLA for school to put in place extra support.

petermaysawthefuture Thu 14-May-20 11:00:32

Just had a quick look at the SEND Code of Practice and early years is covered by it.
Here's the link


rabbitheadlights Thu 14-May-20 11:08:12

@Daisychainsandglitter thank you for reply your DD sounds wonderful, did she learn to communicate as expected? D'S is completely non verbal, he doesn't point o r take me to things if he wants something, it's literally like a guessing game to figure out what he nee ds. @Lougle thank you so much for getting what I meant, I had convinced myself, obviously wrongly that ds would "catch up" eventually and obviously now realising that may not be the case, my main concern is that maybe I could have been doing more to help him, had I not adopted the "he will catch up" idea.
Can I ask if there was anything in particular that helped any of your dc with communicating? My mind is fixated on the fact that he might be scared or anxious and I wouldn't kniw? Is that even possible? He has meltdowns but will that always be the case, every time? I hate the thought that he might be anxious and I'm not doing the right things??

OP’s posts: |
rabbitheadlights Thu 14-May-20 11:27:09

@petermaysawthefuture I'm not sure how it works she just said that ds won't get 2yr funding without DLA, and that without 2 yr funding he can't access nurser place and the extra support the nursery can claim funding for would only be granted if he is in reciept of dla

OP’s posts: |
Winnipegdreamer Thu 14-May-20 11:29:00

School funding and DLA are unrelated I believe

rabbitheadlights Thu 14-May-20 11:32:31

Under the provisions of the Children and Families Act 2014, the designations of Early
Years Action and Early Years Action Plus have been replaced by SEN support, a
graduated approach to supporting children with SEN or disabilities.
From September 2014, *2-year-olds for whom Disability Living Allowance is paid will be
entitled to free early education.*

OP’s posts: |
rabbitheadlights Thu 14-May-20 11:33:50

Under the provisions of the Children and Families Act 2014, the designations of Early
Years Action and Early Years Action Plus have been replaced by SEN support, a
graduated approach to supporting children with SEN or disabilities.
From September 2014, *2-year-olds for whom Disability Living Allowance is paid will be
entitled to free early education*

OP’s posts: |
rabbitheadlights Thu 14-May-20 11:35:13

Sorry this is for pre school nursery what I found says he can only get funding if in reciept of dla

OP’s posts: |
petermaysawthefuture Thu 14-May-20 11:45:04

I'm not entirely clued up on early years as my son was older when i started looking into this.
I think though, that that means that you won't get a free place (you still pay for that placement if not in receipt of DLA) but if they are in a nursery setting then any extra help they need should be given.
The SEND code of practice covers ages from 0 - 25. So there is definitely guidance in there in regards to your son.
Have you spoken to your health visitor about this?
Also if you google Local Offer for your area that will also bring up resources for you to look into.

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