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SN children

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

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Original poster

do you struggle to find money for all the sn stuff?

37 replies

2shoes · 04/12/2009 09:16

recent thread made me wonder how much people struggle to find the money needed for all the extra stuff we need.
I know we do, finding money for holidays(more expensive as cannot camp, go abroad or caravan) is just one example.
so how do you do it?

OP posts:

borderslass · 04/12/2009 09:27

we have a touring caravan for holidays go to a basic site and it doesn't cost much more than staying at home because I still cook most of the meals also the only way to visit grandparents and uncle who live 400 miles away but fil and his wife spolil them rotten and take us out which we don't agree with.we can also take everything he is used to to keep him calm most of the time.

PeachyDrapedInSparklyTinsel · 04/12/2009 09:40

We struggle at times,even though I know we don't have as many traditionally- SN related expenses as others might

We do camp fortunately, ion fact no other holiday would be possible as we couldn't use something as unfamiliar as a hotel; we tried a caravan last year and won't again, I got sick of chasing DS1 as he kept jumping out of the non-lockable window,

Not being able to work obviously is a massive hit, had we not had the SN i'd have been almost qualified as a teacher by now so looking at actually earning something. Likewise whilst I can't oprove it, I am certain dh's breakdown years ago was related to the SN challenges we had then, and as such that cost us our home.

Most of the money seems to go on trashed furniture, clothes as they get lost mopst weeks (averaging a coat a week atm), things to do with them to make up for the fact that ds1 can't go out with friends- at ten he is aware that his friends do go out and play now. Special diet needs eat far too much, having to run a second car so that I can access the SNU in the day for meetings etc as no bus (DH uses a second car, a Smart Car, for collegeso I an have the main car close by). Even little things like the mobile phone I just took out so I can be contacted by school if they need me (I never bothered with one before, we always shared a decrepit old pay as you go), and DS2's cubs (the only SN thing he ever gets to do) add up.

Ialways have next months wish list doneway before the DLA comes in- first up this month will be a new ahrness for ds3 as it has just become too much without one. And small gifts for the teacers- not for us the gift per teacher thing oh no,with all TA's we have it works out as 15 IIRC. But no child wants to be the only one to give without one do they? And frankly, with ds1 they earn it in triplicate!

Then entire new uniforms as wearedown to one jumper per head, one of which is a bit damaged again. I lose a jumper aweek easily, and they'renot cheap either. I worked out that we spend £600 a year on school sweaters for two of them alone.

PeachyDrapedInSparklyTinsel · 04/12/2009 09:42

'the only SN thing he ever gets to do)'

NON sn sorry

CardyMow · 04/12/2009 11:48

bleurgh! My DD in secondary...£5 pair of PE socks almost every week, 2x £16 school jumpers, 1x £5 planner, 1x £14 PE jumper, £15 new school bag + £15 to replace all the school books/text books she lost (gawd only knows what she did with it, she lost her whole bag!!) + £5 locker key that was in bag + £3 to replace front door key that was in bag. And that's just since September.....

CardyMow · 04/12/2009 11:51

OH and the GF food for my 7yo DS1 aint cheap either, can't get it on scrip til I have DLA apparently. And I have to replace my 6yo DS2's special chair after xmas as his last one is too small.

CardyMow · 04/12/2009 11:51

What's a holiday???!!!

2ChildrenPlusLA · 04/12/2009 11:59

Well we live in a teeny tiny house because we could not afford a bigger one, and we saved for years and years to get a loft conversion to make it bigger.

We got a quote and was all set to go, and then........ we spent it on therapy for our ds.

Now it is devestating to see all our savings disappear funding provision that he is legally entitled to from the LA, but at the same time I know just how fortunate we are to be in a position to do it.

2ChildrenPlusLA · 04/12/2009 12:00

Oh forgot to add, that that money was saved instead of me paying for a pension

Original poster

2shoes · 04/12/2009 12:25

whats a pension?
I just thank god for the family fund, it has meant we have been able to go on holiday.
I gave up trying to work yonks ago, I can't imagine there is a job that would fit round appointments and illness.

OP posts:

VirginPeachyMotherOfSpod · 04/12/2009 12:31

A pension is somrthing wot Dh had before he met me.

And something for which DH has to sisgn copiious ofrms signing his parents over to anyone but him.

herjazz · 04/12/2009 13:07

I apply to charities when it comes to funding big stuff. I absolutely loathe the whole process but at least I have a fair few photocopied applications I can crib

Was wanting to apply for week in vallechia through cerebra and got all the forms after being on waiting list the previous year. Then I left it and left it cos I couldn't muster the gusto to complete. Hey ho

We can't really go anywhere too flash / overseas on holiday anyway cos of dd's medical needs so affording holiday not such a biggy for us. My dh dreams of having our own camper van one day.. all fully loaded with medical supplies and ready to go We do go camping / to festivals and on cheapy sun holidays now but tbh its often more fuss than it's worth packing all the stuff she needs

Mitchell81 · 04/12/2009 13:31

We are fortunate in that Dh has a good job, but even if I wanted to work I couldn't. DD has been off school since 18 Nov because their was swine flu in the school and we are now waiting for her 2nd dose of SF vaccine before she can go back. Which is on the 14th dec.

What gets me is the increase in price because something is in the special needs catalogue like a slinky £1 from the poundshop or £15 from SN catalogue. (Which is criminal) Or £6/£8 for 1 vest suitable for SN child.

chopstheduck · 04/12/2009 14:49

I agree with peachy, a lot of our money goes on replaced destroyed stuff and clothing.

Ds1 decided to play naughts and crosses on the car this morning

tibni · 04/12/2009 15:02

Replacing damaged stuff is a huge expense here.

ds laptop is away at the moment having a new keyboard (thank goodness for insurance this is the second repair in 6 months, last time was a new hard drive after a bout of frustration)

PC has just had to have its 3rd keyboard in as many months for the same reason.

ds has to have 1-1 whatever he does. He horserides but that costs us a lot more as he can not have group lessons.

When I changed my car I had to go for a model with locking rear windows as he was climbing out car windows at the time and I couldn't physically get him in a 3 door car.

Childcare is impossible so I have to work around ds which restricts my earning.

VirginPeachyMotherOfSpod · 04/12/2009 15:46

Argh we're down another coat

FFS

sarah293 · 04/12/2009 16:32

This reply has been deleted

Message withdrawn

Original poster

2shoes · 04/12/2009 16:56

perhaps we should ask mn hq if we could have a wnted/give topic just for sn.
then if someone has a coat and someone needs it....problem solved.

OP posts:

sarah293 · 04/12/2009 17:17

This reply has been deleted

Message withdrawn

5inthesleighbed · 04/12/2009 17:26

Thats an excellent idea 2shoes. I've got DS2's Mac sitting there, and can't use it until ds3 is old enough to walk or go on a buggy board, so could come in handy for someone as a loaner until I need it.

Definitely, having to buy extra stuff for ds2, ear defenders, different foods, he has to get skinny fitting shoes, nappies for nights as the HV won't give him them on prescription as he only uses them at night....the list of small things do mount up.

GentleOtter · 04/12/2009 17:47

The list can be sort of endless. I'm going to add things like battling with the landlord to get windows - ours are single paned which open wide and nowhere to put a lock on. There is a ten foot drop....
Yes, the extra nappies when dd was younger, special treats eg pony riding to help balance and confidence, extra bedding, rant.

We don't 'do' holidays. Never have and I suspect there will not be one on the horizon.

The village I came from had a 'benevolent society' which was a large hall where things which were not being used were stored. If you needed a pram/cot/wheelchair/hoist etc then you went and got it, put your name in the book and returned it when finished with.
Everything you ever needed was there - plates, toys, bedding, heaters etc. It was a super system.

Original poster

2shoes · 04/12/2009 17:55

so should I approach MN HQ
or to save me getting dressed up, do I do a thread in site stuff(then we can all chip in)

OP posts:

cloelia · 04/12/2009 18:29

i too think it is a good idea, I have lots of stuff from my older daughter which younger cannot use and would happily pass it on (well i do, but to charity shops etc which having read one of the other threads i now feel not so warm about), but do not know what a thread in site is so make it easy!!

Original poster

2shoes · 04/12/2009 18:32

sorry
site stuff topic

OP posts:

VirginPeachyMotherOfSpod · 04/12/2009 19:26

Yes another agreement here 2shoes

5inches maybe we need to hybrid our kids feet LOL? DS4 has i width fitings; luckily someone on MN is being kind enough to send us her ds's old shoes otherwise it'd have to be handmade ()

VirginPeachyMotherOfSpod · 04/12/2009 19:27

Could we also ask MN to put out an appeal for whatever ten year old in SE Wales has 6 coats please? They can't just vanish can they?

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