There Are Exceptions
Last Friday was a great day. An hour before we set off for the Big Day Out, the mail arrived. It contained our older boy’s first set of NCEA results. He achieved every Level 1 standard he sat, and picked up a couple of merits along the way.
For an Asperger Syndrome child we once thought would need sheltering all his life, it was a brilliant result. We went into the lounge and showed him. He was pleased and proud, as you could see from the photographs we took of him with his certificate. His teachers say his peers have learned to not only recognise, but to value his difference. He is, literally, an original thinker. Here’s to another year.
Yesterday was not a great day. A woman from Correspondence School rang regarding his younger brother, also Asperger but a very different person, who has been out of mainstream school for more than a year. He didn’t get a report last year — he didn’t return enough work.
Through the generosity of friends, we had been able to take on a tutor, a kind and hugely experienced former school principal. We quickly realised that our original plans had been too ambitious. Our son is very bright — he reads and spells better than many adults, is articulate, and seems to grasp computer programming well – but he has some significant deficits. When he felt overloaded, or encountered work he couldn’t immediately grasp, his anxiety would rocket and things would go haywire.
We cut back the length of lessons and, through experience, discovered that going to the tutor’s house worked better than having him come to ours. Parents of AS children may recognise the anxiety generated when an extra body suddenly enters the home. The tutor wanted to focus more on simply working together, rather than setting our sights by the Correspondence School curriculum, and there was some merit in that. But eventually he decided that our son needed more than he could give, and we reluctantly let him go.
But we had been in touch this year to negotiate a slimmed-down, and more realistic, programme for him and were preparing to make a another go at it.
Not any more. The news from the school was that our Group Special Education case worker had withdrawn approval for our son to continue with Correspondence School, because not enough work had been returned. The school couldn’t do anything about it.
Incredibly, this was our first notice of the decision. Two weeks before school goes back, our case worker had not even done us the courtesy of telling us herself. This wasn’t entirely out of character. In theory, she was supposed to see us frequently throughout the year. She came twice in all of 2007.
I’d be lying if I said that was a problem. I never felt our case worker had a good understanding of autism spectrum conditions, and her advice was often inappropriate. Over time it had invariably consisted of “send the child to school, no matter what”. Given what we, and his last school, went through, this wasn’t an option (she also pressed us for some time to send him to a residential facility, which, a specialist agreed with us, was a reckless idea). Last year, she did not approve our original attempt to undertake a reduced curriculum with Correspondence School. She told us this was not possible.
I would have to bite my lip when she came. She often gave us the impression that our problems were our own fault. Once, she offered unsolicited advice about the older boy, with whom she had no formal involvement. We should look at steering him into a job parking trolleys at the garden centre, she said. Yes, she was talking about the boy who just passed all his NCEA standards.
We may make a complaint, but I’m not interested in dealing with this woman again, ever.
So now we have to work out what to do, again. I’ve been exploring one option, but that requires a school registration. We tried with our local secondary school, the one that’s done so well for our older boy, but they’re wedded to their mainstreaming and wouldn’t countenance a school day that included time out of full-size classes, which are a sensory and emotional problem for our boy.
Again, we feel anxious and guilty. Like others in our position, we ask ourselves whether we’re doing enough. We agreed to medication (a low-dose SSRI), which was a difficult but correct decision. We’ve embarked on an RDI programme, which is promising (the specialist psychologist we see as part of this was astonished by the case worker’s urging to send our son back into classrooms) but a long, demanding game.
And again we feel like there is nothing for us, and no competent help from the system. Every New Zealand child has the right to an education. But, as we have discovered, again, there are exceptions.
Dave Dobbyn wrote on January 23rd, 2008 at 9:48 am:
Hi Russell, our hearts go out to you and your sons. We’re praying you’ll find a way. Keep heart.
Warm Regards from Dave, Leisje, Grace & Elias.
Ben Wilson wrote on January 23rd, 2008 at 10:05 am:
New case worker? Worth a try before you give up on Special Education.
Impressed by the older son, though, well done. Do not underestimate your own efforts in this achievement.
Russell Brown wrote on January 23rd, 2008 at 10:14 am:
Thanks Dave and Ben. I actually burst into tears after I wrote the above — having the rug pulled out from under us like that was the final straw. But we’ll get there. We’re cool.
I do genuinely think that there are serious gaps in the system for families like ours. I’ll be doing some politicking.
Kerry Weston wrote on January 23rd, 2008 at 10:17 am:
Hang in there, Russell ….I understand exactly where you’re at. I have an almost 15 yr old son who has been out of school for over two years. He’s not officially anything in the psych system, they don’t accept he has a problem. I have experienced exactly the same attitude from GSE and it is very debilitating fighting a system that one (naively) expects help from. We also got deregistered from Correspondence. I’m now being threatened with prosecution for truancy, so I wonder what they’ll do after that? It won’t help my son, or me. There’s an alternative programme run by the Salvation Army called Kickstart which is mostly outdoor education (tree planting, making tracks, camping, tramping, canoeing, Drivers licence etc) which sounds good for kids who don’t function well in classrooms, but the MinEd says they have to be 15and a half to get dispensation to go. Is that useful at all? Best of luck.
Richard Belton wrote on January 23rd, 2008 at 10:18 am:
Hi Russell
2 comments
I’d like to talk to you re your participation at our National conference 12-14th sept this year in ch ch.
Your Principal can sanction any programme of work he likes-there is a section of the education act that sanctions this-can’t remember it specifically -maybe 71??
So if you can find a sympathetic principal you should be able to work something out-happy to discuss further
Kind regards
Richard
Russell Brown wrote on January 23rd, 2008 at 10:37 am:
Thanks Richard. I try not to spray around my email address, but there’s a “reply” button at the bottom of this post that will reach me:
http://publicaddress.net/default,4768.sm
Hansel Dunlop wrote on January 23rd, 2008 at 10:38 am:
Hi Russell
I went to school, for the first time, when I was 15. Before that I had an exemption from school and was home schooled. Is that an option?
There was (I’m now 27 and have no idea what’s occurred in the interim) an extremely strong, eclectic, and secular group of people that home schooled their kids in Auckland for very diverse reasons.
There used to be a wonderful woman, who taught me to read, called Claire Aumonier who was very good at kicking ass in the Educational Review Office. A bit of googling shows that she is still doing her thing in Sandringham - www.mindalive.co.nz. I know she would be open to having a chat if you called her.
Speaking from my personal experience. I learnt nothing from my two years the school system, University was a different matter, but I did make a couple of decent friends.
Best of luck for your family
Hansel
Russell Brown wrote on January 23rd, 2008 at 10:49 am:
There used to be a wonderful woman, who taught me to read …
I’m not sure anyone but himself taught our younger boy to read. At the beginning of a short, happy period where things worked at intermediate, he was given a spelling test and pretty much aced it. I don’t think anyone in the class did better.
He was the only kid who knew how to spell “attorney”. I asked him how that was. He explained: “playing Warcraft” …
Hansel Dunlop wrote on January 23rd, 2008 at 10:52 am:
I should also add that my version of being ‘home schooled’ was the equivalent of free range education. Me and my sisters just played, read heaps of books, and generally socialised with the adults in our lives. The result is that the three of us are all successful in very different ways. There was certainly no curriculum though.
Hansel
Steve Bagshaw wrote on January 23rd, 2008 at 10:58 am:
Kia kaha Russell.
Every day I hug my little one (8 months) and feel thankful that so far she seems unencumbered by difficulties.
I pray to myself that she stays that way as I feel ill-equipped to suffer the slings and arrows of ‘the system’ any more than we will with a ‘normal’ or even ‘high achieving’ child.
I see my good mate with his AS daughter and see him sighing quietly to himself even on a good day, but of course I also see their deep love, given and received.
Aroha nui.
Steve
Hansel Dunlop wrote on January 23rd, 2008 at 10:58 am:
Hah! I finally learnt to read because I wanted to play Dungeons and Dragons with some friends.
What a geeky little 8 year old I used to be
Alexa Forbes wrote on January 23rd, 2008 at 11:28 am:
You are in a great position to get political if you have any energy left at the end of your day. We feel for you. Good luck.
Ben Wilson wrote on January 23rd, 2008 at 12:01 pm:
I totally get your feelings of anxiety and guilt. My boy is 2 and suffered some severe brain damage shortly after birth due to a stroke. The therapists that work with him always give us lots of pointers about how we can do the stuff they are doing to give him more help, but it’s pretty hard to emulate the work of trained professionals. Hard to do it, and hard to find the time and energy to do it. But what we have done appears to have helped.
Don’t beat yourself up. It doesn’t help. You are doing a lot, your boys are lucky to have loving parents, and surely the older one’s success is an encouragement to you, given the younger has a similar condition. They may not follow the same paths, but the fact you have found a path once makes you a better guide than most.
Chris Browne wrote on January 23rd, 2008 at 12:41 pm:
Hi Russell. Much of your post (and the replies) resonates with our own experiences with a child for whom mainstream education was impossible and cruel but who is now happy and flourishing in a very different environment. Like Hansel, I urge you to contact Claire Aumonier at Mindalive (which is now located in the old Carlton Bowling Club in Alpers Avenue, Newmarket, Ph 5297592) for a chat. You appear to have done wonderfully well already and you may find that Mindalive will be the answer for your son. It was for ours. Even if if it isn’t, you will find talking to Claire very rewarding in my experience.
Paul Williams wrote on January 23rd, 2008 at 1:39 pm:
Russell,
I hope you get some better support, and the comments above suggest you might, but I hope you also realise the fantastic work you and your family are doing highlighting the need for better solutions. I have huge respect for the way in which you’re working with others to ensure adequate resources. I’m assuming you have the attention of officials if not Ministers?
Peter Martin wrote on January 23rd, 2008 at 1:45 pm:
Hello Russell,
‘ I’ll be doing some politicking’
I have a special needs child who will be a new entrant this year. I am advised that of the thirty hours a week he ought to be at school..he will be funded for a teacher aide ( utterly necessary) for some nineteen hours. We are expected to pay for the aide after that,or have him stay at home.
Given this is the Year of the Great Tax Cut, I already have my letter in with the Minister of Education.
Ever the merry go round.
Russell Brown wrote on January 23rd, 2008 at 2:00 pm:
Thanks everyone — again.
Yesterday wasn’t a total loss. I feel unburdened having told it like it is, and I’ve also got my head down and pursued another option, which is already looking promising.
On politics: Hilary Stace and I got some time last year with Steve Maharey (who, it turned out, was about to depart) and a senior official. I also plan to contact Bill English. There are too many people being let down to let things lie.
One reason for our older boy’s success is that he was diagnosed at the time the new special education system was launching, and (on appeal) we got him ORRS (ie: ongoing till he’s 18) funding.
The secondary school shares around the teacher aide-resource he brings with him, which is fine with us. The trouble is that ORRS funding is now almost impossible to get, even for kids with much greater needs.
The other problem is a serious lack of specialist competence in handling Aspergers. It’s understandable in the sense that AS only entered the official diagnostic manuals in 1994, and there are many people who’ve been working in the system a lot longer than that, but it’s incredibly frustrating to have to deal with people who don’t know what they’re talking about, and to simply have no specialist support.
David Cohen wrote on January 23rd, 2008 at 6:28 pm:
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.
Masked Marvel wrote on January 24th, 2008 at 12:53 am:
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.
Joanna Curzon wrote on January 24th, 2008 at 4:37 pm:
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
Hilary Stace wrote on January 25th, 2008 at 10:41 am:
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.
John wrote on January 27th, 2008 at 12:42 am:
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.
Jason Kemp wrote on January 27th, 2008 at 6:11 pm:
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.
Kerry Weston wrote on February 4th, 2008 at 11:23 am:
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.
Russell Brown wrote on February 4th, 2008 at 2:02 pm:
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.
Kerry Weston wrote on February 4th, 2008 at 2:17 pm:
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.
Karen wrote on March 5th, 2008 at 10:10 pm:
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