Here are some suggested organisations that offer expert advice on special needs.
This is a Premium feature
DLA Appeal(10 Posts)
I put in a claim for my child (8 months) who has clubfoot. The treatment involves wearing orthopaedic shoes which are fixed together with a metal bar, to hold the feet apart at shoulder width, for 23 hours a day. She has a lot of sleep disruptions because of it. I made a very detailed claim, did the diary of a day at the back, explaining all the extra needs she has above a non-clubfoot baby, included the medical report from her consultant.
She wakes repeatedly at night, because the boots and bar bang when she moves her legs and wake her up, or because she's got stuck in an uncomfortable position. The claim was rejected and the reason they gave was because the care at night needs to be to prevent her causing damage to herself or others, or for personal care needs.
Surely, a child who wakes because they have rolled into a position they can't get out of is potentially causing damage to themselves? Sometimes her knees and hips are twisted around into painful looking positions. I don't know how to make it clearer to them. The initial claim paperwork I was sent just said that night time care needed to be for a certain amount of time and/or a certain number of times. And regardless of why she wakes, the fact of the matter is she wakes significantly more than another child her age. Sometimes it's an additional 6 times a night on top of milk wakings and nappy wakings. We recently had a spell of her not wearing her boots and bar because of blistering (docs recommendation) and her sleeping was so much better.
It really frustrates me, my child has her feet tied together by a metal bar all day long, how is this not classed as disabled!? I know all 8 month olds need a lot of care, but the wakings are so much more with the boots and bar.
It just seems unfair that it is only if she wakes for damage to herself or personal care that they'll consider it, not for any other reason of waking up related to her condition.
Is your daughter in markells or mitchell boots?
Mitchells are much much more comfortable/gentle on the skin with soft cotton socks but often only used for complex cases because of increased cost, unless you ask for them because of difficulties in markells. You have a good case IMO because of the blistering.
or ask for a dobbs dynamic foot brace?
When will the hrs be reduced? I can't remember with DS2 whether he was in them for 3 months or more post tenotomy for 23hrs then reduced. Your DD might sleep better once she is freer in the day.
I think we used a small pillow wedged in for a bit to try and get DS more comfortable at night.
Maybe wrap something round the bar to stifle the banging?
I know I'm not helping with the DLA stuff but maybe one of the above might help you get a bit more sleep. It's exhausting, I remember those early days well. I was so tired we ate fishfingers a lot, it was all I had the energy to cook
Hope things get easier soon
I found co sleeping helped a lot too, v easy to reposition DS/feed without too much faffing about. might be worth considering if you don't already
Thanks Artichoke. We do cosleep, she has a 3 sided cot against my bed. It is great for feeding!
She has the mitchell boots, they are standard at our hospital. It was the mitchell that caused the blisters. I haven't considered the dobbs bar yet, I've been a bit unsure about it as she's still in full time. Ideally I'd like the ADMs but I'm concerned that they haven't been proven to work yet.
I'm not sure when we'll go part-time. We've done 3 months previously but her foot wasn't fully corrected so she had more casting, which coincided with the blister healing, handily (unilateral, blisters on one foot, casts on the other) and I've been told to do full time again, for 2 months, until next appt.
Thanks for the advice, I hope it does ease up! It is so hard to imagine going back to work full time with her sleeping like this. Which is why I'd applied for dla, in the hope it could support my going part time and allowing me more time to sleep.
Instead of describing how it affects her you need to describe how it impacts on what you do for her. So for example a child who is up in the night won't necessarily get care. A child who needs help repositioning themselves because or help settling because they get distressed would. It's subtle but can you see the difference.
Does it also fit with their long term criteria? That was the other thing that struck me from your post. If it does definitely challenge but shift the language from dc has difficulty with to dc needs help (describe help) because (describe difficulty)
Also it will be hard because an 8 months year old will be expected to wake frequently.
You need to emphasise the knees and hips point and that she doesn't have the skills to get herself out of the painful tangle
stress how much more you have to.do for her than you would have to do for a baby without additional needs. but from what I know it is very hard to get DLA for a baby - you have to show that you have to give support over and beyond that what a typical baby (without SN) would require. and at the baby stage that is very difficult because all babies need a very high level of care.
May be helpful if you haven't read it already