Active discussions

Please or to access all these features

Talk
SN children

Here are some suggested organisations that offer expert advice on special needs.

Original poster

Just got back from the Orthotic Clinic and...

50 replies

Dingle · 14/10/2004 12:20

dd has to have AFOs!
She was an absolute little angel and sat there so nicely singing along to Old MacDonald with me as they plastered her little legs. I was soo proud of how well she behaved.
Thought I had coped quite well but now I'm not really so sure-it seems just another step further away from "normality" and what with her starting mainstream nursery in a couple of weeks.
Just another hurdle to jump over-I know I am just being stupid.
Has anyone got any helpful stories or advice regarding the AFOs- I am totally clueless.
Also I really need to get my act together & complete the mobility aspect of the DLA forms. Do you feel it is worth me even trying now dd is almost 3?(She is walking but obviously there are lots of difficulties )
Feel really weird-can't seem to get motivated now!

OP posts:
coppertop · 14/10/2004 13:12

You're not being stupid at all. I don't know anything about AFO's (or even what they are but just wanted to say I'm sorry you're feeling so low at the moment. Appointments in general are such a b*gger to deal with. xxx

jakbrown · 14/10/2004 13:29

Dingle, yes, I'm embarrassed to say I'm not sure what AFO's are either. Bless your dd. You are not being stupid at all, sorry you're feeling down. Re: mobility aspect of DLA, I may be wrong but I'm sure for my dd I couldn't get this until she was 3. DD has absolutely no sense of danger and has to be forceably held at all times when out and often refuses to walk at all hence mobility bit awarded. If there are difficulties then you should get it. We also got offered the option of using the mobility bit to 'hire' a car (which we took- have great big people carrier but I can't drive it! . Hope I'm right in this advice!

Davros · 14/10/2004 13:29

Dingle, give yourself a break, these appts are always upsetting or at least unsettling. THe DLA forms will still be there tomorrow, no Monday! I think you shoulf definately go for DLA mobility. I know there's others on here with experience of AFOs, sorry I can't help with that side. I think there have been threads before too...

Original poster
Dingle · 14/10/2004 13:40

Thanks for your support.
AFOs are ankle foot orthotics, plastic supports for dd's ankles. She has DS and is very "supple" shall we say, although no-one has actually put a name to it officially. She walks & stands with hyper extended kness and they are trying these AFO thingys to try to adjust her posture and "soften"her knees. Does that make any sense- did warn you that I was clueless!
Re: DLA, she is 3 at the end of the month so I could get the forms in at any time now , just don't know how to present them really, to be honest I just put them to one side and haven't even really looked at them. Memories come flooding back of the very early days when dd was about 3 months and I was completing the first lot of forms!
In a way I am glad I haven't already completed them. At least now I suppose I have a bit more of ammunition. [positive hopeful smiley!]

OP posts:
mieow · 14/10/2004 13:44

My son has knee high AFOs and DD has ankle AFOs. The only thing with them is getting shoes to fit over the AFOs, trainers are great, especially with velvo straps.
Both my kids are in mainstream school, and the schools cope well with the splints, so don't panic.
DLA? Yes claim the mobility, both ,y kids can walk, but have difficulities walking distances and fall all the time. If you need help email me mieow79 (at) hotmail com and I will try and help you
BTW I am sorry I have no idea what your DDs dx is, my two have CP

mieow · 14/10/2004 13:45

you should have recieved the forms by now, phone them

chatee · 14/10/2004 13:51

dingle,
my dd wears afo's and yes it is hard to start with as you feel it is another step away from normality but and this is a BIG BUT the improvement to her walking was amazing and i am so proud of her-just like your dd she was a star and still is every time she goes for plastering, singing and chatting away to the docs etc(dd was 2.3 when she was first plastered).my dd is now 4.2 and yesterday was fitted with her first lycra suit from head to toe-yes i had that same feeling again but do you know what.....
this morning dd was crying because we had put trousers on her(mainly as it is a horse riding day but just in case she didn't want to let anyone see her lycra suit yet)SHE wanted to show off the suit and told us she would lift her clothes up to show everyone!!
sorry waffled a bit there...
as for DLA get them in and then they are over and done with.....until.....
lots of love to you both

CleanKittyCat · 14/10/2004 14:10

You can't get the mobility component of DLA until child is 5, My ds has amobnility problem too, not as bad as your dd but all the same I couldn't get anything unitl he turned 5. I now get lower rate.

Bumblelion · 14/10/2004 14:12

I have also got an orthotics appointment for my DD (Sotos Syndrome) on 3rd November. Because I have been seeing so many specialists since she was 9 months old (she will be 3 at the end of this month), I had to ring the hospital to find out what orthotics dealt with as had previously had no appointment with them - told me it was feet and back and she had been referred by the physiotherapist. Have no idea what they are going to do for/with her, but because she has Sotos Syndrome she has pronated feet (collapse inwards at the ankle). Will be interesting to see what they suggest.

Original poster
Dingle · 14/10/2004 14:13

Clean KittyCat-I might be wrong but I thought you could get DLA mobility at 3 but only if the child qualifies at the higher level. If not then you can re-apply at 5.
Is there anyone who can clarify this please?

OP posts:
chatee · 14/10/2004 14:14

my dd has been getting mobility since 3

Original poster
Dingle · 14/10/2004 14:19

Bumblelion, I've been trying to find some info on the net but not come up with much yet. I do know that they can make up all sorts of insoles/inserts to go into footware to correct all sorts of problems.
DD has been seeing physios since she was a tiny babe. Our last orthotics was a year ago when we were in a very similar position-but it was decided she didn't need the AFOs then!! Makes me wonder how much diiference there would have been now if they went for it last year!No good dwelling on that!
What date is your dd's birthday?
Good luck with your appointment

OP posts:
CleanKittyCat · 14/10/2004 14:23

I might be wrong, it's four years since we were finally awarded it. They may have changed the stipulations. I just know what I was told.

Sorry if I got it wrong

Bumblelion · 14/10/2004 14:25

My DD will be 3 on 24 October - how time has flown!

She has been getting DLA since she was 18 months because of her severe global developmental delay. Got an application form to apply for the higher rate at the age of 3 but have not applied for this as I don't think she would qualify. The DLA she is receiving will continue until she is 5 after which time I will need to re-apply. Had no problem filling in the forms as my portage worker did it on my behalf.

Original poster
Dingle · 14/10/2004 14:26

CKC-no need to apologise me dear, aren't the goalposts always changing anyway! I don't know what I ever did before I found MN!

OP posts:
Eulalia · 14/10/2004 15:16

Hi Dingle, glad that your dd was happy about getting the AFO's. My ds was back recently to get new ones as he has grown. The only thing that confused me was that the nurse said that he'd probably always have to wear them and that they'd not actually correct his feet. He has a review meetng coming up but I am wonderng why he is wearing them at all if they aren't going to help.

onlyjoking9329 · 14/10/2004 15:46

re DLA if you get top rate care then you can apply for mobility from age 3, if you get middle care then you can only apply for mobility from age five, i can never work out how they work out just because a child needs night and day care that they also can have mobility and if your child sleeps all night they dont have an mobility problems until they are five silly system if you ask me.

mieow · 14/10/2004 17:47

Ds got high rate mobility when he was on middle rate care, when he was 3 1/2 (when they changed the ruling for mobility) then when we reapplied two years ago, at 5, he was awarded high rate care and mobility.

mieow · 14/10/2004 17:48

you can only get mobility at 3 if they feel your child should get high rate.

Original poster
Dingle · 14/10/2004 19:10

I wouldn't say that she was "happy about it" Eulalia.But I was amazed at how well she coped as they put the plaster one her little legs. Took three of them to do it mind you!{grin] and me singing away in the background in an attempt to keep her occupied. To be honest she didn't realise what was really going on bless her. Got to go back in about 3 weeks to have them fitted.

OP posts:
Cadbury · 14/10/2004 19:22

Hi Dingle. Hope you are feeling more calm now. Bless your dd for being so good. It must have been really odd for her. I just wanted to send you a huge smile and a virtual hug. Fancy meting up again soon?

Original poster
Dingle · 14/10/2004 19:31

Thanks Cadbury,I'm sitting here like a woman on a mission surrounded by books and leaflets on special needs! I must admit it didn't help by the fact that DH didn't even remember where I had been this morning when I phoned him up for a bit of support! I know he has had a lot going on too but I just felt so alone in all of this.
I would love to get together again some time if we could fit it in around my hectic social life, that is. [pretending that all this chaos is due to my flitting around socially emoticon]

OP posts:
Cadbury · 14/10/2004 19:36

Aww bless you. Are you free for a coffee in the next couple of weeks perhaps? My dh is b**ering off to India with work for 2 weeks (I'll soon be appearing in the "I'm not coping" thread) leaving me with 2 grumpy and disobedient kids. Don't know what the plan is about a meet-up with snmum/fio. She never answers any of my questions!
Hope you can make sense of th literature. Good luck!

jakbrown · 14/10/2004 19:37

Dingle, I sympathise with the feeling alone bit. My dh often does that, dd will have a big appointment or workshop and he'll totally forget. He's just manic in a totally different world. It's hard sometimes

slightlymad · 14/10/2004 21:03

Hi,

Just wanted to say....DS just been awarded mobility higher rate and he is 4. It's awarded from age 3.
He's been getting higher care since he was one year old. The mobility kicks in at 3 years.