Comments on: There Are Exceptions

By: Karen

Karen — Wed, 05 Mar 2008 10:10:18 +0000

Hi Russell,
I am sorry to hear of your troubles and know them too well. We too are fighting the system. We have an 11 year old daughter with Aspergers. Last year we enrolled her on Correspondence, advised by the GSE worker and sick of the incompetency and downright abruptness of school staff. She lasted 5 months and then we were de-registered as she had not submitted enough work. Enough to make your blood boil. We moved here from UK, 15 months ago. We educated her at home for 15 months as they just didn’t get the plot, and that was with the equivelent of ORRS funding. Now she is nearly 12 years old and is desperate for social acceptance. She currently attends the local High School which we had to fight for a place for her, We took it up with The Human Rights Commission. Eventually the school accepted her. She only goes until 11.10am. I really don’t know if school is right for her, but it makes me so frustrated that the system does not give ORRS funding and even if they did…what real differnce would it really make? You have to costantly advocate for your child and it is never ending. I do not really see any way out apart from home educating. Correspondence even told us we were not entitled to Supervisors payment as we had not submitted enough work! Last year my daughter attended 144 HOURS of school, not fully through choice, but through lack of support. Parents need to hear they are not alone on this as eventually we may give up. Hearing other people are in a similar situation makes me more determined. We are in Northland and are around 2 hours from Auckland where it seems most support is, so it’s HOme alone!
Good luck,
Karen

By: Kerry Weston

Kerry Weston — Mon, 04 Feb 2008 02:17:16 +0000

Thanks, Russell. RDI sounds interesting - how is that accessed - GP referral, self-referral? Or is it only available in Auckland through specialist psychologist?

I suspect my son is Aspergers or high functioning ASD. I reckon he’s probably got by alot on copying others’ signals & responses. I’ve pretty much ‘let him be’ the last year, and he has definitely stabilised in mood.

He responded badly as a littlie to going to kindy (total cling-on), utterly spazzed about daycare (not an option), adapted to school eventually, but always had days off culminating in outright refusal. Was always v. quiet @ hated being ‘on display’. Is paranoid about needles - faints @ dental nurse, refused immunisation & local anaesthetics. He is very articulate, witty & perceptive about people. Doesn’t like noise, has online friends but sees “real” ones a few times a year & when they come to him. Has definitely missed some milestones, mostly around attachment to male figure (no dad) but seems to have latched onto his older brother as role model/leader.

I see the MinEd has some new guidelines on ASD, they weren’t there last time I looked (about 2 yrs ago!)

I liked the look of Notschool & will talk to the NZ contact on the phone soon, tho I suspect it might be out of my league financially.

By: Russell Brown

Russell Brown — Mon, 04 Feb 2008 02:02:05 +0000

Hi Kerry. RDI is Relationship Development Intervention, which aims to bring young people back through some of the emotional and cognitive milestones they missed. I have some misgivings about the way it’s sold in the US (where there is a growing amount of state funding to try and capture — unlike here), but we have a good relationship with our therapist, who had previously seen our son as a psychologist. It’s principally about very targeted parenting techniques.

And yes, our son starts on NotSchool this week! Like RDI, it’s not funded, but there’s likely to be a push to change that. Given that there’s no comparable homegrown alternative, it seems like a good idea to me.

Feel free to email me and we can discuss these things in more detail.

By: Kerry Weston

Kerry Weston — Sun, 03 Feb 2008 23:23:42 +0000

Hi Russell

Hope you check back to this thread - what is an “RDI” that you mention in yr first post?
I’ve got a meeting this Friday with the District Manager, GSE - thanks to those posters who pointed a way thru the bureaucracy. I even got my boy to visit a high school! He seemed okay, but slept 18 hours straight later. And has succumbed to fright and withdrawn again now.
Have you followed up Notschool & what are yr thoughts?

Thanx.

By: Jason Kemp

Jason Kemp — Sun, 27 Jan 2008 06:11:31 +0000

Hang in there. Your story about the case worker reminds me of that old Winston Churchill story about not engaging with the monkey when you need to talk to organ grinder.

Sounds like it is not easy to find out who that is though.

I’m sure you have it but your experience so far sounds like it is in clear breach of policy guildelines found at
http://www.minedu.govt.nz//index.cfm?layout=document&documentid=7327&indexid=7954&indexparentid=6871

All the best.

By: John

John — Sat, 26 Jan 2008 12:42:39 +0000

Go Russell! It is great to hear another real case of a parent having the confidence to fully back the real experts - child + parent + specialist.
A little knowledge on the subject can be fatal.
It is a complex issue because it is a *syndrome* and because we more likely to be strongly *individual* because we seldom are in to ‘conforming’. Other authority figures and officials must be trained and take the time to understand Asperger’s and the individual before uttering a word… unless it is to ask about what they should never presume about. Thank you for all you are doing.

By: Hilary Stace

Hilary Stace — Thu, 24 Jan 2008 22:41:09 +0000

Re David’s comment above. There are many famiies fighting for their autistic children’s educational rights but understandably not many of them have the energy to take it higher. The three ministers of education I have lobbied about education and autism issues have all said - give me specific details about the situation etc and we can investigate. They can’t work on anecdote. Autism NZ has been trying to collect data on specific cases for years for this purpose. The trouble is, understandably, that when you go back and ask the family if they want this next step they have either managed to come to some sort of agreement with their school, got local help, changed schools, become homeschoolers, or/and thoroughly burnt out. So we need to have some way to gather the anecdotal cases into something tangible to present to those who have the power to change things, without stressing families further.
The Inclusive Education Action Group is currently taking a case of education exclusion to the Human Rights Commission and although it is not autism specific it will be worth watching.

By: Joanna Curzon

Joanna Curzon — Thu, 24 Jan 2008 04:37:25 +0000

Russell, I am very sorry to learn of this situation.

My suggestion is that you request an urgent meeting with the Ministry of Education, Special Education (GSE) District Manager, at which the decision about The Correspondence School is revisited. Here is the link to the contact details of all GSE District Managers and offices: http://www.minedu.govt.nz/index.cfm?layout=document&documentid=7278&indexid=10588&indexparentid=6871

The other person you may wish to contact is the Special Education Facilitator, whose role is to resolve difficult situations between caregivers/families and whānau of children with special education needs and the school they attend. Here is the link to the Ministry of Education information about the Special Education Facilitators: http://www.minedu.govt.nz/index.cfm?layout=document&documentid=10786&indexid=7959&indexparentid=6871

By: Masked Marvel

Masked Marvel — Wed, 23 Jan 2008 12:53:31 +0000

Russell, I understand not wanting to burden your family with the stress of a complaint process about this, but may I suggest that you consider making a complaint to the Ombudsman about the way the Correspondence School has handled this? Putting the substantive injustice to one side, at the very least the process that the School has followed sounds abysmal, and you should not have had this sprung upon you. The complaint process is very easy, can be done
online, and then the responsibility passes to the Ombudsman’s office, who will investigate and deal with the matter themselves (no lawyers, no stress for you). They have a wide jurisdiciton, which includes the Correspondence School, and really dealing with this kind of thing is precisely why they exist. Kia kaha.

By: David Cohen

David Cohen — Wed, 23 Jan 2008 06:28:57 +0000

I echo the general expressions of sympathy here. Specifically, though, what is to be done in cases like this, of which there are so, so many?

It seems to me that one thing that might help push this country forward when it comes to autism and education is the establishment of some type of national advocacy agency where these children’s needs (and rights) can be supported and, where necessary, argued for in shameful cases like this. The way families have to struggle alone is plainly demoralising in the extreme.