Shout out to anyone in NZ who has any ideas, I'm stuck stuck stuck as a stuck thing

[Frikonastick]

Have been living in NZ for nearly four years now. Am in Tauranga. DD was diagnosed with dyslexia in year one, and also has auditory processing problems.

DD is 8 now and it's getting harder, not easier. What I'm really struggling with is how to get support. I can find no forums or groups for parents / people with dyslexia, and I have so far been unsuccessful in managing to connect with any other people who are going through anything similar.

DD is convinced she's the only person in her school who is dyslexic. It's so isolating, and we are both starting to get really very down about it.

If anyone has any ideas, please, I'm open to all suggestions.

I'm not in NZ, but here are some links:

www.dyslexiafoundation.org.nz

www.4d.org.nz/school/

Thanks echt, but none of those have forums. There is no one to talk to. No way to connect with other parents.

I want to be able to say to my kid, look over there is another kid just like you.

You are not alone

You don't have some terrible awful thing wrong with you

You ARE normal

There's a billion resources where I can read pages and pages, but that's not what I am looKing for. I want somewhere I can exchange ideas, be supportive, tips, resources, things that worked for some and not others, and in a golden universe, maybe even a meet up option.

But will settle for any sort of contact with others who have dyslexic kids

Unfortunately dyslexia (and ADHD, and others) are really underfunded in NZ.

Your googling might have thrown up this, from December.

www.parliament.nz/en/pb/sc/scl/education-and-science/news-archive/education-and-science-committee-calls-for-better-support-for-students-with-special-learning-needs/

From what I've heard (no direct experience), parents either have to shout loudly to get their allocation of their school's special education budget, or self fund. Which is shit, obviously - hardly democratic.

Sorry, that doesn't answer your original question! I was thinking about forums in NZ and the only thing that came to mind was the TradeMe community forum, you could try posting the same request there. It's a widely read and busy forum.

Here we go - try here:

Tauranga dyslexia support group

And a larger, national group:

Dyslexia Support New Zealand

TheFilthiestPersonAlive, Thanks for those, the Tauranga group I had tried previously, there were only 3 members, I see it has grown a bit, will go back and try again :-)

The other group I had applied to be a member but never heard back, I will go re apply now

Yes, the funding and government / school support is a whole other thread. We pay for everything ourselves. Last years auditory processing therapy alone was near on $4000

I've gone back to work to pay for DDs tutoring and various support therapies. But, at least I was able to do so, and we can 'afford it' with some manouvering. What other people do, I just don't know.

Maybe I should have headed this thread, if your child has SEN don't move to NZ!!!

Man, that is really tough. I had heard about NZ's poor track record with special education, but I don't have experience of it myself.

We're actually moving back there quite soon, my husband is a teacher, but not a Kiwi. He currently works at an extremely well resourced school packed with psychologists, counsellors and special education co-ordinators. I think he's going to find it difficult in NZ - but obviously it's much worse for the kids, not having that support.

All the best for your DD. x

Sorry to hear that you're having a tough time Frik. I have no direct experience as my eldest is only 3, however I have emailed my DH's cousin who is a primary school teacher who has also experience working in a special needs unit at an intermediate in Wellington to see if she has any suggestions.
As an aside very disappointed to see things haven't progressed since my DH was at school on the west coast. He wasn't diagnosed until he had left school and joined the Navy, a bit late by then.

Lol! Yes! He is going to find it, interesting, shall we say.

Some schools are better than others, but that's still saying very little indeed.

I try not to despair, I really do.

Thanks TheFilthiestPerson :-)

Chur, it's so bad here.

But it's also the apathy towards things like this that makes me so frustrated. DD goes to a specialist therapy place, that offers a range of services from auditory processing to developmental movement etc etc. and when I called them up to ask about resources, or groups, or anything at all, they were just like, oh. Um, no. We don't know. Shoulder shrug, not bothered, why would you even ask.

And they are actively servicing this sort of community!

I bumped into a mum from school there with her child (who is not dyslexic) and she was so clearly mortified and uncomfortable that she saw someone she knew, and IN FRONT of my DD, said oh we aren't telling anyone that child is coming here, you know how people can be.

And my DD was just like, mom, is this a secret? Must I not tell anyone? Is it bad?

I just want to both punch walls and scream, and also cry for a year and never let DD out the house again. Ever.

That sounds so stressful OP and especially as you don't get state support.

I am Irish but have been living in the US for 20 plus years and have had my children here.

There are lots of bad things about US society/culture but one of the really good things is their idea that if you can't find what you want, you need to start it yourself and they don't care who knows their problems.

In my Ireland growing up the mantra was you tell nothing to anyone and you hope for the best. Sounds like what you are dealing with.

If I were you I would approach the school or the PTA and ask could you have a general meeting for "parents of children with ... not sure what to call it ... a diagnosis, additional needs - not sure what" You need to find a tribe and your tribe may initially be parents of children with all sorts of additional needs but after a while you can re organise. Or maybe put something in the local paper.

I know this might sound impossible but I guarantee you there are loads of parents out there with children just like yours waiting for someone to get them together (without even knowing they needed it). You could be the one who changes things.

Really good luck to you.

Just saw your last post. Stick a sign up sheet on the notice board at that therapy place and just say "Any mums or dads want to meet for a coffee" And see what happens.

Pallisers, I did approach the school and the PTA (I'm on it) and was met with a very firm no. And I was not at that stage even looking for specifically dyslexic support either, but exactly as you say, just a group of parents who may be having similar issues meeting up for coffee. The schools position was that I was welcome to start a group outside of the school, but I wasn't allowed to start one at the school, or put out a notice or anything like that. The PTA were just very non committal. I put my case forward and there was lots of 'great idea! You should totally do that!' But they said they had no facility to take the school on when they said no.

Ironically, I know two of the moms on the PTA have kids with needs, but they were not open to it either.

I do like your idea of putting up a notice at the therapy place though, good thinking, can only hope they let me!

I hear ya OP, I've go no suggestions but just want to say your not alone. My dd went to a rural country school in NZ (north Otago) and got no support for what I believe was dyslexia, or at the very least she was below academically which she got very little support for. Sometimes she got the odd 1:1 maths tuition with the teacher aid but it was never regular. Does she at least get 1:1 time with the teacher aid?

There is absolutely no support for SEN in NZ, I'm shocked that you had to spend $4k on therapy. My DD also had a boy in her year with auditory processing problems, got no support either (and this was a good 7/8+ years ago). Sadly the schools just don't have the funding, and I can imagine it will only get worse if it changes to bulk funding for schools.

DD muddled through primary school just and left at the end of year 7 with the academic ability of a year 5. I remember one time she came home crying because she could not do arithmetic and she got caught copying so had to stay in her whole lunchtime and do it herself, with no help. This is one of many stories sadly.

We couldn't afford extra tuition and also the petrol to commute into Dunedin for said tutoring. In the end she repeated year 7 (she was put up a year originally due to her birthdate) and we could just afford to sent her to a state integrated school in Dunedin where she got the support she needed. (as it's half privately funded). She spent year 7-9 catching up.

Your PTA sounds absolutely useless, I mean what is the harm in starting a support group?! that said I find PTAs not that useful in general

Yes no funding is a big problem. And they have changed the system lots. I didn't really know how it even worked (the school and child connections) to be honest and i was training to be an ed psych. There was a lot of not wanting to diagnose and not singling out kids with the idea that being mainstream and keeping it all normal helps (or maybe no funding for anything else). Aren't there more RTLBs (ex teachers being trained and resourced) in schools now? These are the people more likely to help your child in school or to know what to do in terms of group help. Personally I'd approach a local OT, and see if they have any suggestions or connections. I think they have more power and say, but you need to pay privately for their help. I also think they'd have more connections and maybe they run their own small groups which may help you. Just a guess.

DD gets exactly zero help. No teacher aid at all.

Our first meeting with the senco after her diagnosis (which we had to pay for total $650) she started the meeting by saying, "I just want to tell you right up front that we aren't going to help you." I was like, then why the actual fuck are we even meeting?! But we were still reeling from DDs diagnosis in the first place and a bit stunned fish like. She just said, we have no funding so if you want help you will have to privately source it and fund it.

What she didn't say, was that when we did all that, they would then make it impossible for the support teacher to work with DD during school times. So she ended up having to go to tutoring before school in the mornings.

DDs school has a strategy where they basically make it so difficult for kids with sen that they must end up self selecting out, and moving schools. For various reasons that's not been an option for us, but I'm just feeling at the end of my tether, and it's the beginning of the bloody year. We haven't even starred yet

Sorry, started yet

omg I am absolutely shocked that she doesn't get any 1:1 with a teacher aid, that to my eyes is unacceptable, my DD didnt' even have an offical diagnosis and even she got one on one with the teacher aid once a week for her maths. I find it completely poor that your school does not have the resources to at the very least be able to provide a teacher aid for a small amount of time per week.

Having said that, my DD has been out of state schools since 2010 so maybe things have gotten this bad, I thought they were terrible when my DD was at Primary (mostly under a Labour Government as well) but this is a whole new level of bad.

Having lived in New Zealand my whole life, sen and SN is still very much a stigma sadly, there has never ever been that support there and education. Because of that they either fall through the cracks or have to pay for Uni students to tutor them (thats very common down here) or go privately e.g Kip McGrath / number works.

Hearthethunderroar, she is at an 'academic' decile 10 school, and they really really don't want kids with sen there. Like I said, they just make it so difficult that people self select their kids out and move to a different school.

I hear you on the private school angle. We are basically trying to hang in there through primary while I work and save enough so that we can send DD to private for intermediate. There is an ACG near to us. But, of course, its a huuuuuuuge expense. And I for some reason DH or I can't work, we will be screwed.

Frik, spoke to my DH's cousin. Sadly she wasn't surprised by your experience and said she thinks experiences like yours are not uncommon in the higher decile schools. She said that unfortunately there is no formal process or structure around things like dyslexia and that it is up to each school to allocate resources (if any). She said in her experience it was the decile 5/6 schools that tended to perform better in this regard. She also mentioned that private schools are often much better at dealing with this, with specialist teaching staff and resource rooms. Not particularly helpful to you at present though. Sorry I couldn't be of any help, I hope that you can get some support for your DD.
This is a bit random but how would you feel writing a piece about it on Stuff? I have a friend who wrote a personal experience/opinion piece on another topic and received lots of support/ideas etc following. I understand if you don't want to put yourself out there though. I still can't quite get my head around how difficult this is to get support. It's ridiculous and so short sighted of the ministry of education.

Frik, spoke to my DH's cousin. Sadly she wasn't surprised by your experience and said she thinks experiences like yours are not uncommon in the higher decile schools. She said that unfortunately there is no formal process or structure around things like dyslexia and that it is up to each school to allocate resources (if any). She said in her experience it was the decile 5/6 schools that tended to perform better in this regard. She also mentioned that private schools are often much better at dealing with this, with specialist teaching staff and resource rooms. Not particularly helpful to you at present though. Sorry I couldn't be of any help, I hope that you can get some support for your DD.
This is a bit random but how would you feel writing a piece about it on Stuff? I have a friend who wrote a personal experience/opinion piece on another topic and received lots of support/ideas etc following. I understand if you don't want to put yourself out there though. I still can't quite get my head around how difficult this is to get support. It's ridiculous and so short sighted of the ministry of education.

FFS, said it didn't post- sorry!

Thanks chur, I appreciate the effort. I hadn't thought about doing an article on stuff, it's funny but I would feel guilty! Because I know we are so privileged compared to most. Essentially we can pay for support, it's just accessing it is so impossible.

DD suffers terribly from anxiety, we were referred to CAMHS when she was six, but because she has good support and healthy home life, once the crisis passed and she was regularily back in school, we were signed out as such and no longer had access to a child psychologist. In the last 2 years we have been unable to get DD a private appointment. Short of her hurting herself again, we are on our own.

In the absence of professional help, I was hoping some sort of group forum would be great.

But, some good news, met DDs new teacher for this year and she seemed the most positive so far of all the theachers DD has had previously, and another teacher at school has promised to take up my crusade to get some like minded parents together. So I have hope!

It's funny, 3 years ago a friend here with kids with sen said, you either fight every day for the 13 years your kids are in school, or you end up homeschooling.