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Hi there

We took our 2 yo to the physio for the first time this week who told us we need to take him to swimming lessons twice a week, and to tumble tots for twice a week (we need to start building up his muscles so they can hold his joints in place). 

It is great that we know how to start helping, but the only place he can do swimming lessons is a private place that charges £10 a session  :o and so this lot will cost a fortune.

Does anyone know of any grants or anything we might be able to get?

Thanks,
Becky
xx

Mummy to four little ones

Hi, Can't help on the money front, but does it have to be swimming lessons, could you not take him and play/teach him yourself in your local pool? Or if it is physio related have you not been offered hydrotherapy to help strengthen, which is what we were given. Guess as usual it will depend on health authority, but they are usually good where children are concerned.

Your local Sure Start centre should have info on local activities/groups, many of which are free:

http://www.surestart.gov.uk/


For swimming I would try your local pool (local authority subsidized) and just go to the public session- much cheaper. Maybe take rubber duck, football etc for added entertainment!
For an alternative to Tumble Tots type activities I would think a regular enthusiastic romp round the local playground would be equivalent, if you have good equipment there. Or at home with music and climbing over the sofa cushions!
Or maybe a soft-play centre- we have one in a play centre where you pay about £50 for 12mths unlimited access  (reduced rate for low income families). Actually it is a charity place for special needs children who also have public sessions- maybe there is something like it in your area? Your Sure Start centre would know.

I hope you find something near you that is just perfect. x

Becky I don't know why you're taking a toddler for physio, but I'm guessing there's probably not a very nice reason!  Even if he doesn't have something chronic (and which may or may not imprve with age, like infantile hip dysplasia), you might be able to get disability living allowance (DLA).  You'll need to fill in a form detailing what he can and can't do, and then a doctor will visit to watch him play etc.  Can be a bit harrowing, and hard to get for children, but if you are awarded it it will make a big difference to you.

Even if it isn't serious, people without poorly children can't understand what trips to the hospital and everything are like.  And swimming and tumble tots seveal times a week will cost a lot.  Get in touch with surestart, and findout about the DLA.

Good luck missus

xxx

Thanks for that Lizzie

He has Ehlers-Danlos Syndrome which basically means all his joints dislocate all the time which is far from pleasant.  It also means his muscles ache a lot at night from the stress of holding the joints in place  :(

So, the long term aim is to improve muscle strength so that it is easier for his body to hold all his joints in place.  He's too young at the moment to go on a muscle strengthening physio programme so in the meantime we have to do the swimming (leisure swimming no good, needs to be lessons to work his arms too) and tumble tots sort of thing.  But, we ain't rich!!   wink 

I've been putting off the DLA thing but might need to come to terms with needing it, it's a bit depressing though  :( 

Thanks,
Becky
xx

Mummy to four little ones

Good luck, with all that
my DH has M.S. and is a Welfare Rights Advisor for the local council
(which means that he helps people locally if they have difficulties with their applications)
you may have a similar service near you…or the Citizens Advice will give you a hand…

Good luck
w.w.

I know it's depressing, I put it off for years!  Finally came to terms with the fact I have ulcerative colitis, coeliac disease and rheumatoid arthritis, and now we're almost £100 better off, I hve a disabled badge, and get updates on local help.

I'm not severely disabled or anything, in fact, even when my wrists are swollen, to look at me I'm 100% 'normal' (whatever that means!).

But it's helped us a lot, especially as there's every chance I'll never be able to have a full or even part-time job (cos staying at home watching Jeremy Kyle all day is so easy, obviously wink).

Swimming will definitely help though, it's such a good form of exercise.  You should also look into Tatty Bumpkin classes, or similar baby yoga type things.  Tumble tots could be a lot of stress for him, muscular-wise.

Hope it all goes well,

xxx

We have a lovely lady who helps with the completion of our DLA forms for dd1, she, like W.W says works for the council to support you and ensure you apply for what you are entitled to.

You should also be able to claim carers allowance, if you are not earning more than £70 ish a week (this may have changed, but may well be worth looking at to help fund the support you need).

I too hated the idea originally, but we have saved the money and been able to purchase an electric wheelchair that is stable over rough ground so that dd has her independance around the farm. We couldn't have afforded it otherwise. smile

You should also be able to claim carers allowance, if you are not earning more than £70 ish a week

Ha!  I wish! My self assessment form is so embarrassing I think the IR take pity on me  ;D

You should also look into Tatty Bumpkin classes, or similar baby yoga type things.  Tumble tots could be a lot of stress for him, muscular-wise.

I think because one issue is that he is hypermobile, yoga wouldn't be great as he could very easily overstretch without realising  :-\  He needs to build up muscle strength - hence the tumble tots.  And apparently although it will cause a lot of aches after he has done it, in the long term it will be really beneficial.  That's what the physio, and other parents have told me. 

I am going to reconsider the DLA thing, I have already spoken to a CAB person who was really helpful and gave me the details of a CAB advisor whose role is to help people fill in forms  ???  She thought we would probably qualify for middle or higher rate care, which means I would then be eligible for carers.

Thing is, I feel a bit of a fraud because although I have to spend extra time doing these things and comforting him in the night it isn't massive and I don't mind.  And most of the time he is just like any other 2yo.  I am thinking that if we get DLA then he is officially 'disabled'.... Do you know what I mean?  Argh…..!!!  smile

Becky
xx

Mummy to four little ones

Becky,

Another way of thinking of it is, without the DLA you will struggle to afford the activities he needs to give him the best start.  With it you will be able to give him the activities he requires which will hopefully mean that his disability will be more controllable in the long run, and that he will be less dependant.  It is not a nice situaion to find yourself in, on the cusp of a label, but it will open some doors for you as well, so it will not all be negative. 

Hi Becky,

I know exactly how you feel, I put it off for ages because I didn't want to label my child "disabled", but she has benefited from the allowance, and we are building the fund up, so that she will have as much support as she needs to be able to do physical things as she gets older.

I felt really strange listing the things I do for her on a form, because they are the things that any loving mother would do to enable her to do "normal" things or just get dressed!

Hi

Thanks guys, and you are right.  The positive thing is that once his muscles are built up there is every chance that he will stop dislocating the joints and will therefore be much better.  So it may be a temporary claim and in a couple of years he will be fine.

Think i'll make that appointment - thanks  :D

Becky
xx

Mummy to four little ones

Hi,
I agree with applying for DLA. My son is dyspraxic, amongst other things, and although I struggled with the 'disability' thing, ultimately he is who he is and now we can afford for him to do private swimming lessons and karate (which is great for children with these difficulties!). No one needs to know of how you are funding it and anyway, I am so proud of him I don't really care who knows! He is bright, inquisitive and very funny and I love him. He enjoys his swimming lessons and even has some muscle tone now!

When I applied for DLA they first of all declined it, but I wrote a letter back saying that he would be unable to progres in a 'normal' swimming class so private lessons are the only way. They then wrote back and we get the medium allowance - a great help.

Good luck with it all.

PS I will also reply to you on the 'diagnosis' question - lots to say!

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