mad woman in the attic....moving countries with a child with CP

[HairyMaclary]

Was it you who moved to Canada with your DD who has CP? There is a distinct possibility that DH's may be getting a job that requires a move to within Europe. I have loads of SN specific questions and wondered if I could pick your brains!

Has anyone else done it?

Thanks!

Where might you be going? Is it an EU country? If not can make quite a difference. DD doesn't have CP but she does have SN and we are abroad (France). There WAS someone who moved to Canada but I haven't seen her on here in a while. You might want to post this in Living_overseas as well to see if there is someone in the specific country who has a child with SN (comes up quite often in that topic, you'd be surprised!)

Yup - an EU country, Holland. I started a thread over there a while ago when it first became a possibility, might go and start another!

Hi Hairy, yes MWITA has moved several times and is v knowledgable, haven't seen her here for a while, perhaps try in forces sweethearts as her dp is military hence the moving.

Thanks I will try there too!

Hey, we are in Germany & my son has SN, can I help??

Thanks! I'm mostly wondering about things like equipment, can you take it with you? We have a range of things like wheelchair, 2 home seats, toilet frame, bath board etc etc. I'd be really stuck without the wheelchair but could cope without most of the others for a short time, but only a short time.
I'm assuming it's a good idea to get an up to date reoprt from all parties to handover to new therapists and schools etc. Is there anything else?
Also, an most importantly, is it doable? I'd always thought of staying in this same house for the next 10 or so years to make it all easier on us all but now we are considering an international move - am I mad!!!

how funny you posted this, ds has mild cp, is incontinent, we are moving to middle east next year! aarrrggghhhhhh

We are still not sure if we are going yet, it's looking more and more likely though. I don't want to put too much time and energy into it yet but we also need to know what to ask for when it comes to the salary and benefits negotiations!

How are you getting on?

We are military, so we move around alot. My son has Austim, so we are a bit different. First I would find out where you are going, then look into the schools. They should sort out most of the stuff for you. We are taking my son back home as he needs to be in 1 place, no more moving around, so we faxed everything the school needed & they did the rest. Ask your therapists for advise too.
Cant see any problem in taking your equipment with you, you will need it were you go, so take it all.
As soon as you find out where you are going, get onto a thread with military families, so many of them out there, been to so many places, and will be able to help you with the advise you need, but everywhere is different. Good luck!!

hello - did you call? don't know how I missed this, sorry! i've been experimenting with different usernames for a while (after the fb/ twitter thing) as i became aware i was probably very identifiable! so i de-regged and re-regged with a different e-mail address.

i know nothing about Holland specifically, but can tell you lots how we go about moving. do you know specifically where it might be (down to town/ school)? i'd be starting to make telephone calls now to find out how the sn system works - both health and education. then i start calling:

potential new paed (via secretary - i try to find out if there is a CDC type organisation and start there to find local paeds, or google for local gps and chat up their receptionists to get HV type people/ any SN contacts who could point me in the right direction) - if i get a good vibe from a paed i've contacted (or secretary) then i ask about referral procedures - usually getting your current paed to write and refer directly at about the 3 month point. sometimes i even have a 'hello' appointment in place before we move! i also ask them about therapists/ therapy referrals. usually the same applies and i get current therapists to forward reports and referral at the 3 month point.

with current therapists i get them to then to an additional transfer report - in particular highlighting what they would have been targetting/ putting in place next if the dc was staying.

school board/ local education hq - google is your friend. or start from local schools and again call receptionist/ sec and ask what the local school board is. then i call the school board and explain we're moving in and asking about local procedures. i try and work out what the system is and who the local IncO equivalent might be... and then speak to him/ her about how to transfer in with a child with a disability.

schools - if i know which school it will be, (even potentially) i'll try and visit. we even managed it with canada (combined it with a holiday)

this time we packed the wheelchair/ dining chair/ toilet surround etc on the advice of the physio and ot, who pretty much said 'well, you need it. if you don't ask, no-one will say no.' so far no-one has called us to say 'why didn't you hand anything back?' in theory within the uk there are set transfer policies which should enable equipment to be passed between pcts, but it is more problematic for o'seas. so we decided to, er, ignore that.

you can e-mail me on madwomanintheattic @ hotmail dot co dot uk

ask away - there's probably loads i haven't mentioned, but aware that i've already typed an essay or ten...

littlepea, do you go to the ssafa additional needs seminars? they are very good. couldn't get there from here but well worth it if you haven't been. really important for parents to go and have their say, as well as picking up information.

Ooh thanks so much! Had another long discussion with DH today - it's so tricky, we are not sure how DS1 will cope, he's in Reception atm at a unit, integrating very well into mainstream but not there all the time. He probably could cope with mainstream but it's not what he's used to and I can't see any English language schools in Amsterdam having a PD unit! How's your DD got on with the social side of moving schools? DS is socially immature but getting there and I don't want to knock his confidence!

All other info is fab, I will start to ring now - we have no set date as no job offer yet but if it's offered it will all move v quickly. Apparently everyone speaks English in holland - I hope so!! We are thinking of having our summer holiday there so could combine the odd paed visit!

MABS - I saw on the overseas board that you are staying here for a bit when your DH goes over, we are considering that too. DS possibly due an op in 6 months, if needed it would make sense to do it here. We are also wondering if it may be a long term option.

AArgh - sorry to go on - it's all going round and round in my head. It's such a good opportunity and without DS1's CP we'd go like a shot but...

Do you feel that your DD has suffered by being moved so much? DS wasn't even born in the UK - we moved home when he was 6 monhts old and I reckon it took 4 - 6 months to catch up with everything. I don't feel we can waste anther 6 months trying to get schooling sorted etc.

Right, must go and study.... Thank you so much, I may well email you!

we lived a couple of miles from the dutch border, and everyone spoke english

dd2 has always been in ms but with full time 1-1 from nursery. i don't think she's suffered by moving tbh (if i did we wouldn't have lol)

this time, because she's a bit older, we had a couple of weeks where she was very upset about not seeing her physio and ot any more, but now she has formed a pretty good bond with the new two, all's fine. tbh i think one of the things we were worried about even from nursery was her forming too close a bond with 1-1s etc, and becoming more reliant than strictly necesary... (she's a blonde blue-eyed charmer who bats her eyelashes at TAs who then swear undying love and do everything for her , rather than supporting her to do it herself

how's his speech? dd2 is usually pretty good now, but she still has issues with clarity - wondering whether any dysarthria etc would be more problematic in a second language environment? (for others, not ds particularly - i imagine his receptive stuff would be fine).

socially, her teacher here identified fairly early on that she needed a bit more help socially, (she tends to get on and play on her own still, rather than joining in) and so has been carefully engineering more contact and play/ table work.

dd2 is having squint surgery in july, and is in the middle of dental work to titanium cap all of her back teeth for protection, so i think we're well into the health side already

dd2 was the only one of my children who was born in the UK lol... great job the nhs did! (we actually moved back when i was very pg, earlier than we were supposed to because of the no long haul after 32 weeks rule)

Anyway, ask away, I'll watch this thread so you don't get caught out if I name-change again - but if you've e-mailed, let me know on here and I'll check it, as I don't always check the mwita e-mail. Don't want to keep you waiting!

Raksha will have to go along to a meeting once we have moved, very new to this as son has only been assessed, would be good to find out a bit more stuff, as no-one tells you anything lol...

google 'ssafa additional needs advisor' and e-mail her to get yourself on the newsletter list. they send it to you directly, wherever they are. all the policy docs are now on the mod pages as well i think...
the seminars are held every two years i think (usually in london, but unit/ ssafa should pay transport costs, and free accomodation in the union jack club for paretn attendees coming from far-flung places). i can't remember if this year was last week, this week or next week lol, but it's around now! it'll be the first one i've missed since dd2 was dx, and i'm gutted - it's really a 'don't miss', and they answer any questions pretty much on the spot - different workshops on education with sce/ ceas etc.
that said - have you registered with ceas yourself yet? obv sce are in the loop anyway if ds is at sce school, but sometimes ceas are useful to have on board when you are moving. i've not used them as i prefer to do it myself rather than relying on someone else, but if you do get to a difficulty and can't resolve it, in theory they are there to provide back-up... we're 'outside' the sce loop at the mo as isodet, but i do like to keep up to date with how the other half live!

yes HairyM, dh goin later this year, I won't go with DS til he had major op in Jan and then dd does gcses in June 11.

have you been short toured for welfare then? (just noticed you said you are moving back) i know a couple of families with childrenw ith autism who are managing to move around reasonably happily, with lots of work for adjustments, but it must be very difficult to be o'seas for dx. do you think you will carry on moving once assessment/ support is set up properly, or is that you hanging up your packing tape, now? are you moving into your own place, or going into quarters?

drop me a line at the above e-mail if you want to chat offline - i'd love to know a bit more. i like to have a sense of what is happening in the real world wrt military families - that way when i need to start banging tables (or proving a point) i can do so with some knowledge of what's happening to other people, as well as me, lol!

Raksha welfare are involved, but I will be taking the kids back while hubby stays on here. We have gotten a quarter with his school only a few miles away. We have to move as none of the schools here can cope with him, and they said the moving about is adding to his ASD, he needs to be in the one house, the one school and no more moving. So this is why we have gotten the quarter, because we dont have a choice but to move. Will no doubt buy house, but will get son settled back in again first.

To be honest, he isnt that bad, so I do wonder what happens to the childre who are really bad, not much support out here for them. My son got excluded from 1 school out here because they didnt want the hassle of getting him help, so i do feel for alot of the kids that get left with no-one to help them.

Any questions, just ask away!! LOL

Interesting... it took nine months to convince them that dd2 would be ok here, I was even told by the army that there were no paediatric occupational therapists (we would have to go to the city about 3 hours away) and no children with disabilities in the nearest town (only gay in the village ). when i called the local paediatric provision myself, they nearly wet themselves laughing. presumably the cdc's waiting lists are imaginary... anyway, it's working out for us.

who has told you that the moving about is adding to the ASD? (not saying it isn't, just curious as it doesn't seem as though you've been given much/ good support). dd2 has some aspie type traits which have meant we've needed to put a lot of energy into prep for moving etc, but obv it isn't her main issue. (coincidentally, the gp is wondering if ds1 may be ADHD/ASD... but that's a whole other ball game)

have you spoken to ceas at upavon? have glasgow said that dh's next posting will be to where your new quarter is? it sounds a bit like they are too keen to offload you if not, and aren't actually that concerned about moving you around... i would also wonder if splitting up the family and putting you and the dcs into a quarter with no support would be particularly benefical for a child with asd and their family.... (but i'm naturally suspicious).

have you called phyllis gibson (aff sn specialist) for advice? she's very lovely (i'm not her, lol.)

sorry - i know it's all sorted, and you are obviously content it's ok. it just worries me a bit, tell me to back off if you don't want to get into it

oh, i found the contact details this morning btw - the new SSAFA Additional Needs ans Disability Advisor is called Jane - tel: 020 7463 9234 (obv UK) and her email is Jane.b at ssafa dot org dot uk

Phyllis Gibson (AFF SN) is on 01354 688163

If I'm teaching you to sucks eggs, apols. I like to make sure everyone knows about these people. So often the powers that be don't pass on the info.

You've missed the seminar this year, I checked the date and it was 12 May, but definitely e-mail Jane and get put on the newsletter distribution list.

Hope your move goes well xx

My son turned 6 a couple of days ago, with this move, he will be in house number 9. Yes, hard to believe, but we move so much. He is now getting very depressed also. He lives for his family back home, he has tunnel vision & all that there is in this world is the family back home. He has no friends here, other kids are so afraid of him which is sad, and he needs alot more help with schooling, none that we can get here. If we go back home, he will go back to his old school which is for SN children, he has my niece, they are so close, and he is just a happier more content child back there. I also have both families to help out as I have a baby, it can get very hard as my DH works away so much. He hopes to get another posting next year & joins us.

To be honest, we spent most of our time here without help, no-one wanted to know. Then I was found by a wonderful school HV & she has done everything to help us. I think we have tried everything, and most people have left us to cope alone, we are just happy to be getting back were we know he will be looked after & helped. The school here have made everything so much worse for him (they havent any help & have no idea what they are doing, not their fault)...

The school he will be going to have set up everything for him, and we have be phoned by so many people who want to get it all up and running, im a bit taken back by how quickly its happened. The MOD have/are failing the families out here, we need more support. Im lucky that im strong enough to have gotten through this, but there are so many other people out there who are at breaking point.

Thanks for the contacts, they will be really useful plus the more I find out, then somewhere down the line I will be able to help other people too. Parents have no idea about any of this stuff, so its great to have this kind of help, thank you.

Sorry littlepea, I didn't realise you were going back to his old school etc, and it's fab that you have a support network there. I'm not worried for you, now ...

If he was at an sn school before though, were ceas/sce not involved with the posting before you went? Has dh let glasgow know that he has a dependant with sn? They normally flag the records, so that the posting location can be checked in advance to see if it will offer the right support?

(I'd love to know if APC were aware tbh - because I've got a bee in my bonnet about the sn system not working in these instances...) Of course, if APC didn't know, then that's a bit different. But so often they aren't bothering to check if needs can be met before they issue posting orders, and they should be. grrrrrrrr.

Anyway, I'm glad you're sorted. I assume you've seen a copy of AGAI 108? (Think it's 108 - it's on the AFF SN homepage I think)

His old school were going to get him assessed before we left, only we never knew, and when all this happened here, we got told it might be a good idea to take him home. I phoned up his old school to see if they would take him back, told her what was happening, and she almost begged me to return him lol...I didnt know they worked with SN children untill a couple of months ago. Within 2 weeks, she has everything set up for us, were as it has taken us 8 months here for the same referals.

No-one cares over here. My school HV was the only one, and she fought long & hard for us.

Glasgow have it on record now, which is good, and dh is AGC, so its better for him getting posting back home.

Not seen AGAI 108, will go and check it out now.

The thought of starting all this over again (they do not except statement of need etc in NI that has been done outside the UK) was filling me with dread, but the way its being done is great, Im really happy that this time, he is going to get sorted.

we are in the same boat - dd2 is/ was statemented, but the statement lapses because there is no sce school here. so if we go back to the UK, she has to be re-assessed.

I really would recommend letting Phyllis Gibson know the problems you encountered, you know. In her position I think it's important she hears the good, the bad and the ugly. It might help another family who are due to go out there, or it might mean she can put a rocket in the right place to get some meaningful changes made so no-one else ends up in the same position? I called her when they were refusing to make up theri minds whether we could proceed on posting. Our belongings were already on the ship, and they were still saying 'well, we don't know'. dd2's school were going mental - they had TA's employed for her support, and didn't know whether to give them notice, allocate them to different kids, or what. awful.

but it sounds as though you have everything ready - when do you go?