DLA and sleep

[MiladyDeWinter]

Hello Have been here before under a different name. My DS is on his way to ADOS as recommended by the child development team and SALT.

I'm wondering whether to bother claiming DLA before a DX because his care needs, especially at night, are way above and beyond the norm.

Do they ask for evidence that he hasn't slept for more than three hours since birth? (is 2.8) We have been dismissed by the GP many times although the SALT and other initial reports contain this information.

Do they take your word for it? I'd be more than happy to let a decision-maker come and observe him at night for a week or so of course

they took my word for it, ds didn't sleep for more tan 45 mins before to days of melatonin

before the days

Our consultant reported our issues with sleep in his clinic letters, but in our claim form I just honestly reported the variety of situations we cope with. So I said 'on a good night we are up x times for y minutes' on a worse night, c times for d mins. On the very worst night we abandon sleep altogether. When DD wakes we have to do this that and the other. Must stay awake to check she has fallen asleep because danger to herself, etc.

They accepted that and awarded HRC.

Criteria, I think is up more than once for a prolonged period, or up several times. A period = more than 20 mins to count IIRC.

Thanks sneezecake and lou! Obviously if Melatonin was (a) prescribed and (b) worked it would be worth its weight in gold but one has to be practical.

It's lovely to be back here with people who really know about the hours and hours taken out of the night for various reasons. DS has just added nosebleeds to it as well, oh joy...

Sorry to hear about your "very worst night" scenario too, lou. It's bloody hard isn't it?

Can you get some help from the LA or a parent support group to fill out the form..? It's a long and tedious job, and you really have to talk about all your problems, which can be a bit depressing, specially when you're half crazed through sleep deprivation...BUT it's worth it cuz you need all the help you can get.

YOu can always reapply when you get the DX

Milady, we now have melatonin, it is an absolute blessing. Doesn't stop the night waking, but does get her to sleep in the evening.

Cheers lou and Lauree x

I think you should go ahead and claim. I claimed after DD had diagnosis. I filled the form in and attached a copy of report I had from Speech Therapist although the report did not mention ASD it was obvious from speech therapists reports that DD had significant problems. We were successful with our claim.

we got higher rate care and DD doesn't have a diagnosis yet, i would claim!

my 2 years baby has night time sleeping problems she don’t sleep more than 2/3 hours in night time.5 days a week she never sleep night time.her dad work full time and I’m not.her health visitor says I need to go parenting group but i can’t for some reason than they says they will contact with us but now 3 weeks they don’t contact.i want to apply for my baby dla but we don’t have any documents or anything only health visitor and we report her gp once.
now how we can do that for dla?