I knew there was problem but still feel devastated

[mummysaurus]

On friday ds (3.4) was seen by a paediatric dr who said "unfortunately" ds has developmental delay. We knew he was behind with his speech, motor skills, concentration etc and it was getting harder to tell myself he was just on the slow side of normal but it still feels a shock.

being told developmental delay doesn't really tell me much either - don't know the cause or what specifically is wrong.

I called the clinic today and they said he would get portage visits (soon i think) but there are delays of at least 12 months for his speech and occupational therapist appointments.

Feel so sad for my lovely ds and sorry for myself - I can't stop crying.

Not really sure where I from here?

no body told me about DLA only on here

i didnt have reports as you dont need adx to get DLA your childs needs just need to higher than another child of that age

small pointer though the forms are really hard to do and it would be advised to find someone who can help you fill them in someone at sn group etc

if you do it your self it will need to be written as everything is on a bad day it will ask for times for each thing too how many times a day etc i always put ongoing or when needed

also helps to add things such as examples of why your child's needs are different such as a 3 yr old child can genuinely ask for simple things etc my child cannot do this so whatever they ask give a reason why your child's needs are different danger awareness etc

it is a hard thing tio do and i would do it over a course of a week they give you a few weeks to send back it gets back dated 3 mths so its great to have the back payment same as carers but you need to be awarded middle or high rate care to go for carers allowance

they will seek out all you write down for them to contact and gather information that way

good luck

cerbra i think is the name has a good guide to help fill in form and these lot are pretty good with tips to

Hi mummysaurus, you don't have to wait for anyone to tell you to apply for DLA. But you will need evidence, so the report will help. If you request a pack by phone, you get 6 weeks to fill it in & they will backdate the award to the day you phoned.

xposts I used the crebra guide, and got high rate care in March. I am going to ask for reconsideration, because DD got turned down for mobility, but consultant on Weds advised blue badge, etc.

Ds did not get SALT till he was 5 here ( then) there was a policy of not giving salt to nonverbal children)I saved up for private help from a salt experienced with preverbal children with GDD and asd. It was lots of money but very well spent. We had only a few sessions but she set me up in what to do and how.
Good luck with DLA - it is so useful to have money to spend on books and therapy even though it is not really meant for that ( yes I splurged on Amazon as soon as our first payment arrived!)
It is not your fault - although I blamed myself at the time. I see myself as not only ds mum but his advocate and therapist and general PA!

Hi mummysaurus, my DD is nearly 3 and also has GDD. She's pretty good at walking and climbing but a lot of her other skills (like talking) are very delayed. Every child with GDD is different--DD's friend at nursery is a great little talker, but can't move around much.

In the early days of learning that DD was 'different', I was desperate for someone to talk to who'd neither try and deny that DD had problems, nor quote sentimental stuff about special mums being sent special babies (comforting for some people, perhaps, but not cynics like me!)

Posting on here was always very useful but in RL, the best help and information I received came from my portage worker. She wasn't looking at DD from a medical perspective, but from an educational one--the emphasis wasn't on what she could not do but how we could help her meet her potential. I hope you get to meet someone as helpful, and I also hope you keep posting on here. Someone will always be around to say hello.

Thanks again for messages - had to get kids to bed etc.

Also never thanked you magso for the cup of tea earlier!

thanks for the advice on the dla - good to know its there b ut not quite ready to apply for it as need time to get over thinking of ds as behind only in a temporary sort of way.

arabica - it must be really helpful to know other people with sn kids at the nursery.

this thread will be such a useful resource for me over the coming weeks and i'm touched you've all taken time from your own battles.

hi, yes it is good to meet other parents--well, I think so, but sometimes people find SN world a bit overwhelming, it's like a whole new language you have to learn.