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Is it worth claiming DLA?

12 replies

elliejjtiny · 12/01/2014 17:27

I claim DLA for DS2 (aged 5) who has physical disabilities - severe hypermobility and all that comes with it eg fatigue, unable to walk far, could wallpaper the whole house with his accident letters etc. So I understand how it all works and how horrendous the forms are. He takes up a lot of my time with his extra needs.

Then I have DS4 who is 7 months (6 months corrected). He has ventriculomegaly (extra fluid in the middle of his brain), low muscle tone and a cleft palate (did have a cleft lip too but that was repaired). He hasn't been diagnosed with development delay but it's obvious to me that he's considerably less alert and active than babies half his age. His needs cost a lot of money eg getting him to his sensory sessions at the SN preschool cost £45 a week and then there are the toys from SN websites that I buy for him in the hope that he will get excited by something (probably a waste of money but I feel like I should be doing something). I was wondering if I should be claiming DLA for DS4. But then I think to myself that the extra time I spend on his needs is self inflicted if that makes sense. He doesn't demand much from me, it's me who keeps trying to stimulate him when he'd rather lie there and stare at the lampshade. It's also me who drags him off to the sensory sessions and baby groups when he's not bothered about going.

My step-nan and all her friends think I'm incredibly lucky to have such a calm, chilled out baby and think I'm insane and "making a rod for my own back" for trying to stimulate him. It makes me feel guilty for even thinking about claiming and that I should just be grateful that he's not like DS1 and DS3 were as babies, up several times a night and shrieking for attention whenever I tried to do housework or drink a cup of tea.

He's been smiling for about a month but no head control yet and he can't eat solid foods although I keep offering him things to taste even though I know he can't swallow it, just to give you an idea of how behind he is.

OP posts:
NoHaudinMaWheest · 12/01/2014 18:59

It is only self-inflicted in the sense that doing the best you can for your child is self-inflicted.
Having a child that is quiet because they are delayed isn't the same as having a naturally calm child so ignore the ignorant.

As far as claiming DLA goes I understood that it was quite difficult to claim for a baby as it is hard to prove that you are doing more than you would for any baby even if you are. However I really don't know from practical experience as ds was 10 before I claimed for him.

Hope you get some better advice soon.

PolterGoose · 12/01/2014 19:34

This reply has been deleted

Message withdrawn at poster's request.

Sneezecakesmum · 12/01/2014 19:38

It's based on a child needing more help over and above that of a child of similar age, so it's unlikely you would get it now. However I would start pushing for assessments and help for your baby. Has he had hearing and vision tests? You are certainly doing all the right things in trying to stimulate him.

lougle · 12/01/2014 21:41

You would get it now, if you think carefully about why you do what you do, and what you do differently to other babies, absolutely. I also think you should be claiming now.

I can think of, off the top of my head:

Ventriculomegaly:
Monitoring his alertness, his reactions and his conscious state to ensure that he hasn't deteriorated - even if you don't realise you're doing it, I know from your posts that you are.

Low muscle tone:
Extra time to get him dressed.
Ensuring he has opportunities to strenthen his muscles
Getting him out of awkward situations that he can't get out of himself due to his low tone.
Supporting him in positions that he can't otherwise manage due to his low tone.
Encouraging physical movement.
Ensuring he's positioned correctly at night because he can't adjust himself easily.

Cleft palate:
Ensuring he doesn't aspirate milk/food
Extra effort with feeding

Etc.

That's before you start all the sensory business.

Claim. Remember what your DS was like at 6/7 months, then compare.

elliejjtiny · 12/01/2014 21:54

Thankyou, so glad I'm doing the right things with him. I'm trying to remember when I started claiming for DS2, I think he was about 6-9 months ish. He's had hearing and vision tests. He has slight hearing loss in one ear (being retested in a couple of months). The eye doctors said his vision was fine but the MRI showed a problem with his eyes, not sure what exactly, the paed scared me with her talk of shunts for the fluid I forgot to ask her what the eye thing meant.

It doesn't help that my niece is one of those babies who is quite high maintenance and my mum and my sister keep telling me how lucky I am that DS4 isn't like that. I didn't really feel lucky when I was cuddling him in HDU for the 2nd time in 6 months because having a GA affects his breathing as it makes him even more sleepy than usual.

I'm going to dig out DS2's copy of his latest DLA form and have a look at the questions before I decide whether to claim for DS4 or not.

I really love the SN board. I feel people understand here. Most parents of NT children I know think I'm a bit weird and always arguing (mostly with bus drivers).

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elliejjtiny · 12/01/2014 21:59

Cross posted. Thanks lougle, you're right there are so many things that I do for him that I just do automatically and forget that you don't have to do that with other babies. I'm like that with DS2 as well, I forget that most people don't keep reins in their handbag in case their 5 year old has a sensory meltdown in ASDA.

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Sneezecakesmum · 13/01/2014 11:19

Please chase up the eye test results. The eyes themselves may be functioning well but the part of the brain which interprets the signals may be damaged. That's what the MRI result might have shown. If this is the case it is even more important to stimulate him visually. That would be over and above NT children.

The cerebra guide is brilliant for pointing out where your child's needs are different and possibly more involved that that of normally developing babies.

Good luck.

Sneezecakesmum · 13/01/2014 11:26

www.scope.org.uk/help-and-information/publications/play-talks

If you download this document from scope it gives you lots of ideas to stimulate children who have physical and visual/hearing difficulties. It's really useful if you are running out of ideas Smile

ness69 · 13/01/2014 15:06

i think you should claim. My son got the care component at 9 months without a diagnosis. You need to go through absolutely everything you do or anyone else does for him and compare that to another child of the same age. good luck

starfishmummy · 13/01/2014 23:01

Definitely claim. I didn't think Should claim for baby ds because "all babies need care" but his community nurse helped me fill in the form. Is there someone who could help you?

RainbowBright75 · 13/01/2014 23:25

I would definitely make a claim. We got middle rate care when DS1 was 10/11 mths old. It wasn't until I did the form that I really realised how much extra I did do for him. He was our first. We're also in a bit of a grey area as he has been left affected by meningitis and sepsis from when he was 3wks old so we can say 'he has 'X'' or make direct comparisons to other children with the same condition. He is now registered partially sighted but he wasn't when I made the first application. He also has global development delays (he's 3 in Feb, he doesn't walk or talk yet) and again it's hard to specify where he is actually 'at' age wise.

We had help from a lady from the CAB to help us fill out the firm the first time which was great. This was through our local children's centre. Could they help you? It's worth an ask? This time, as a result of her help, I felt confident enough to fill out the form myself when his renewal was (is) due (when he turns 3 next month). We just had his letter this weekend and we've been awarded higher rate for both care and mobility.

elliejjtiny · 14/01/2014 16:16

Thanks everyone. We go to a portage support group so I will ask the lady who runs it about help with the form. I do DS2's form myself though so I'll probably have a go myself and ask the portage lady to check it.

I've dug out the MRI report and he has hypoplastic optic discs and thin optic pathways. I've tried googling but it just comes up with hypoplastic optic nerves which I assume is a different thing.

DS4 went to his first sensory session yesterday and I'm so glad I made the extra effort to get him there. He really enjoyed it, more than I've ever seen him enjoy anything. He fell asleep in the car and stayed asleep for 3 hours.

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