nervous about dla

[sequeena]

I'm terrified of another child having the same problems, especially a boy as it seems to run in the male side of my family so we're not going to do anything until we know what's going on with his genes.

 

[lozzy21]

wow that really sucks that you dont get more help in America... as crap as the uk is.. im glad we have things like this (although not sure for how much longer the way things are going).

I am just hoping the get the lower rate care. hes not eligible for mobility yet as hes not 5. so anything on top of that is a bonus. I didnt even know you could claim DLA for the problems my son has as i always saw it as something for children/adults with an obvious disability. it was our education visitor who told us about it. I cant believe that woman was so greedy though.. to be honest whatever we get given is a godsend and helps immensly espcially once you factor in the top up of child tax credits (again i didnt know about this.. found out on an autism website).

Most of all out of all of this im actually looking forward to my son getting a proper diagnosis. Weve known there was something wrong from 1 when he stopped talking and started throwing himself at walls. Thankfully thats stopped now and he claps or slaps his face.. not ideal but defenitely better than going headfirst into a wall.

do any of you guys worry that any other siblings will be the same? DS2 is 9 months and im so worried hes going to end up the same.. although i guess this time it will be easier because i know what im looking for and we already have all the help for seth so getting help for him shouldnt be as hard. xx

If they qualify for the higher rate mobility you can claim it from 3.

 

[sethsmummy]

wow that really sucks that you dont get more help in America... as crap as the uk is.. im glad we have things like this (although not sure for how much longer the way things are going).

I am just hoping the get the lower rate care. hes not eligible for mobility yet as hes not 5. so anything on top of that is a bonus. I didnt even know you could claim DLA for the problems my son has as i always saw it as something for children/adults with an obvious disability. it was our education visitor who told us about it. I cant believe that woman was so greedy though.. to be honest whatever we get given is a godsend and helps immensly espcially once you factor in the top up of child tax credits (again i didnt know about this.. found out on an autism website).

Most of all out of all of this im actually looking forward to my son getting a proper diagnosis. Weve known there was something wrong from 1 when he stopped talking and started throwing himself at walls. Thankfully thats stopped now and he claps or slaps his face.. not ideal but defenitely better than going headfirst into a wall.

do any of you guys worry that any other siblings will be the same? DS2 is 9 months and im so worried hes going to end up the same.. although i guess this time it will be easier because i know what im looking for and we already have all the help for seth so getting help for him shouldnt be as hard. xx

If they qualify for the higher rate mobility you can claim it from 3.

the most my son would get would be lower rate mobility as he can walk but needs a lot of guidance and it takes us forever to get anywhere due to either him stopping and refusing to walk or him getting distracted lol. A walk that would take 5 minutes without ds1 can take upto 30 minutes with him. xx

 

[lozzy21]

wow that really sucks that you dont get more help in America... as crap as the uk is.. im glad we have things like this (although not sure for how much longer the way things are going).

I am just hoping the get the lower rate care. hes not eligible for mobility yet as hes not 5. so anything on top of that is a bonus. I didnt even know you could claim DLA for the problems my son has as i always saw it as something for children/adults with an obvious disability. it was our education visitor who told us about it. I cant believe that woman was so greedy though.. to be honest whatever we get given is a godsend and helps immensly espcially once you factor in the top up of child tax credits (again i didnt know about this.. found out on an autism website).

Most of all out of all of this im actually looking forward to my son getting a proper diagnosis. Weve known there was something wrong from 1 when he stopped talking and started throwing himself at walls. Thankfully thats stopped now and he claps or slaps his face.. not ideal but defenitely better than going headfirst into a wall.

do any of you guys worry that any other siblings will be the same? DS2 is 9 months and im so worried hes going to end up the same.. although i guess this time it will be easier because i know what im looking for and we already have all the help for seth so getting help for him shouldnt be as hard. xx

If they qualify for the higher rate mobility you can claim it from 3.

the most my son would get would be lower rate mobility as he can walk but needs a lot of guidance and it takes us forever to get anywhere due to either him stopping and refusing to walk or him getting distracted lol. A walk that would take 5 minutes without ds1 can take upto 30 minutes with him. xx

Not necessarily , my daughter can walk too but is unable to walk far with out pain. It goes on what level of support they need not what disability they have.

 

[sequeena]

Yes I agree. Thomas can walk but within minutes is asking to be picked up or put in the buggy because his joints hurt and he falls over a lot. We don't expect him to be without a buggy for a long time.

 

[essie0828]

So does the mobility benefit give you access to mobility aids or is it extra money to help pay for mobility aids? I think here we don't get a money benefit but if your child has mobility issues that medically required aids then the price of the equipment is covered or you will be "loaned" equipment. And you can get a parking sticker.

 

[sethsmummy]

hmm im sure that if a child needs a walking aid over here it should be provided by the NHS although im not sure on that one the other ladies might be able to help more. If you recieve the High rate mobility though instead of taking the money you can get a car.

Seth doesnt get pain when walking. he just gets tired/grumpy/distracted. he cant safely walk beside a road by himself as he tries to play on the curb or if he sees something/someone he wants he just runs out. or if a loud noise startles him he runs away from it inc into the road.

i have to say though his slow walking is going to be perfect with his brother starts walking outside we did have a pram for seth until just before DS2 arrived and if it gets too much for him then he sits on the hood of the pram... like last week after his full day at nursery 9am-12:30pm then 1pm till 3:30pm he actually fell asleep sat on top of the pram and on a couple occasions has ended up falling asleep while walking.. although i didnt put that on his form as its only happened twice x

 

[essie0828]

That is great that you can get a car if needed!

DD doesn't walk yet, she takes a few steps but we have to hold her hands and still yet she falls. Braces have helped but the weight of them and her shoes tires her out very quick. We will probably be starting her off in a k walker soon, it will cost us $1500 if we can't get a loaner

 

[sethsmummy]

oh my gosh thats such a huge amount! Do you have any relatives that might help you out hun? or is there anywhere that sells second hand ones in great condition? xx

 

[AP]

sethsmummy in your situation its very hit or miss, and depends on who is looking at the forms. I know someone whos child needs a lot less support mobility wise than our Alex outdoors , yet she gets HRM and we dont. Bloody luck of the draw and i cant be assed appealing

 

[essie0828]

oh my gosh thats such a huge amount! Do you have any relatives that might help you out hun? or is there anywhere that sells second hand ones in great condition? xx

We get a lot of support from my mom and DH works his butt off. The early intervention programs have a network they use to help us get used equipment or rentals as the little guys grow out of things so fast. Also if it's considered Durable Medical Equipment we may be able to get a prescription for one through the Orthopedic docs but that's not always an option depending on the insurance you have.

 

[lozzy21]

The mobility element is extra to any aids they need. If they need a wheelchair they would be given one for free with no affect on their benefits.

 

[sethsmummy]

Atomic: I cant believe how much it can vary... their should be a set criteria to meet but then again i suppose they cant do that as every single case will be different.

Im basing my thoughts on what ds1 will get due to another child who attends the same nursery as him. I have talked to his mum quite a lot and he can talk/is toilet trained/ sleeps through the night and doesnt need as much support as ds1 and he gets higher rate care and low rate mobility. So on that im hoping well get at least low rate care. Were hoping to be able to afford to run a little car.. which will be seriously helpfulll aspecially during winter as ds1 is scared of severe rain or wind and it knocks him over with him being so small.

essie: im glad that there is help out there. I think thats the only bad thing about america is the whole medical situation. Its disgusting that some people cant get the help they need because they cant afford it makes me very sad.

are you girls all ready for christmas?? HAPPY CHRISTMAS EVE!!

 

[sam2eb]

I'm Suprised that they would recieve high rate care, I thought that the criteria for that included help through the night.

Anyway your son sounds like mine and we were awarded dla without having to appeal. No mobility element tho x

 

[sethsmummy]

thanks sam thats good to know. my son still wakes every night. he either falls out of bed/had bad dreams or something spooks him. last night id left his cupboard door open a bit and it scared the living daylights out of him when he woke up bless him. always got to have our cuddles and his hot chocolate and if theres no hot chocolate then its up time for me lol x

 

[lozzy21]

Really don't base it on some one else's. Niamh developmentally is ahead of where she should be but gets the higher rate care. As I said its not what they can do its how much you have to do for them. Niamh is toilet trained but is unable to get up and down herself. First thing in the morning or on a really bad day we have to carry her to the toilet so she would fit the same criteria as some one needing a nappy change.

 

[essie0828]

Atomic: I cant believe how much it can vary... their should be a set criteria to meet but then again i suppose they cant do that as every single case will be different.

Im basing my thoughts on what ds1 will get due to another child who attends the same nursery as him. I have talked to his mum quite a lot and he can talk/is toilet trained/ sleeps through the night and doesnt need as much support as ds1 and he gets higher rate care and low rate mobility. So on that im hoping well get at least low rate care. Were hoping to be able to afford to run a little car.. which will be seriously helpfulll aspecially during winter as ds1 is scared of severe rain or wind and it knocks him over with him being so small.

essie: im glad that there is help out there. I think thats the only bad thing about america is the whole medical situation. Its disgusting that some people cant get the help they need because they cant afford it makes me very sad.

are you girls all ready for christmas?? HAPPY CHRISTMAS EVE!!

The healthcare situation over here can be pretty crazy. FX'd things are changing for the better soon.

 

[sethsmummy]

Really don't base it on some one else's. Niamh developmentally is ahead of where she should be but gets the higher rate care. As I said its not what they can do its how much you have to do for them. Niamh is toilet trained but is unable to get up and down herself. First thing in the morning or on a really bad day we have to carry her to the toilet so she would fit the same criteria as some one needing a nappy change.

awww poor niamh.. that must be really hard to watch her go through hun

fingers crossed essie... iv seen theres a lot of different views to the whole obama care etc at the moment.

did everyone have a good christmas? xx

 

[sequeena]

Lovely thanks, though Thomas has still not been right in himself.

 

[sethsmummy]

aww fingers crossed hes more himself soon hun. its not nice when theyr just not right.

seth wasnt really interested again this year. he ripped into his presents.. didnt even get all the paper off before he was onto the next one. not one smile or anything.. for 6 presents in and then opened his hotwheels cars and that got a WWOOWWW ... then he went off to play with them with the rest of his cars. lol x