You put your child in, you put your child out...

Yup, all I can think of how we are expected to dance with our kids' futures, education and health.

It seems to be a total hokey tokey dance with the education system here in NZ.
Policy, disability rights, actual needs, schools, options within the system and internal procedure seems to entwine itself into a never ending and contradicting maze.

We 'fell into' homeschooling by necessity.

W's needs were such he was probably clinically depressed and certainly seriously contemplating suicide as an 8 year old because of the stresses and difficulties of coping in a mainstream school without supports - supports we had requested and the school had declined to supply - or even use supports we supplied ourselves.

Not prepared to be the mother of an 8 year old suicide victim, and having hit a brick wall with the school, I did the only option left to us and pulled him from school. Because he'd improved with a trial run at home the GP at the time didn't want to refer him to any mental health services - clearly the root cause was school and so it was an education issue.

The education system and the health system here are like cogs grinding in opposite directions even though children and their families need a clean and simple meshing for the best outcomes for the children.

I was aware at the time that pulling W from school and homeschooling him meant that he wasn't entitled to any supports from Special Education, therapies etc. At the time it was the least of our worries - and these had been denied by the school anyway so really seemed a moot point. This was his second school letting him down like this and as we had already discovered, if a school refuses to apply for funding there is nothing anyone can do about it - even for a kid with a diagnosed disability.

However - 5 1/2 years down the track we now discover that just because he hasn't improved as we had hoped, that testing points that his best educational setting is not compatible with a mainstream schooling setting, schools' autonomy continues to run rife and funding for children with mixed needs simply isn't sufficient W's options are surrounded with brick walls.

The policy - both that of Special Education and that of the National Disability Framework - states that people with disabilities should have equal rights to basics as compared to those without and this includes education. Special Education policy states that those needing special education supports have the right to the most appropriate educational setting for them to be successful.

And so, armed with the testing showing that mainstream school will not be the setting for W to be most successful we asked for an assessment for him to be enrolled into Correspondence for his secondary schooling. I can't teach him the range of subjects he needs at this level and he's entitled to an adequate education.

The first assessment was a total fiasco with relevant people not contacted, irrelevant people contacted, a report riddled with errors including a mis-representation of W's official diagnosis of Asperger's Syndrome. It resulted in a formal complaint from us which has not been upheld - despite their decision letter not addressing 3/4 of our concerns and the section regarding the mis-quote doesn't even make sense!
However they did concede to giving W a fresh assessment.

This assessment was yesterday - and very thorough - even including meeting with and assessing W which never happened before!
However we don't expect to get the approvals he needs as apparently, once you opt out of the system you stay out. It is apparently against policy to go to Correspondence from homeschooling. You can only go to it from school and on a school's recommendation.

W would not attract any funding help other than what a school decides to give from their discretionary funds and as already experienced there are many other demands on that money and a child who does not create difficulties in class is unlikely to get it and when a school decides not to help then no one can make them.

So we have no good choices here - we either make up his secondary schooling as we go along, pay for a curriculum which won't lead to a national qualification (although apparently NZ Universities do recognise it currently) or throw him back into school. As the first assessment also included significant time delays he would not be able to go to the most appropriate school for him as we live out of zone next year anyway.
Even if we could get him into the most appropriate school supports are dependent on the school's willingness to supply them and even then testing says this won't be the way for W to actually achieve to his potential. He will be spending all his energies coping rather than learning.

Once he is exhausted by coping he will deteriorate. W, being the kind of kid he is, will turn that in on himself rather becoming a problem for the school.
He already has a tendency to saying he is useless and worthless, he previously engaged in mild self-harming behaviour and is at risk for depression anyway. But none of that will be enough for a school to say they aren't managing him and that he needs to go to Correspondence. That will take some major problem.

The system is saying we actually have to leave him to sustain significant damage to his mental health, self-esteem and educational progress before they will help him - great point to be able to say 'told you so'!

Quite apart from the impossible situation this leaves W in it leaves me wondering - everyone says we have a world class education system here - really??
No wonder that we have around 20% of people leaving school with no qualifications, have such a high dis-engagement with education rate or why home-schooling is increasing these days. The rise is mostly made up of those with kids with mild or mixed special needs.
The problem is, while the issue is 'fixed' from the education system's view-point when these kids leave, our situation is going to become a persistent one as these children reach secondary and parents want the best for their children.

There is also no wonder that the employment rate for those with diagnosed Asperger's Syndrome apparently sits around 8 - 12% - and we're talking part time not full time employment!

Considering we have our 20% non-achieving tail, the rate of those diagnosed with ASD is increasing, as people saw from my post on World Prematurity Day the numbers of prem children with moderate learning differences is rising - what are the actual numbers of children not being well served by our 'world class' system?

The latest Government document on Special Education was entitled "Success for every Child"
                                         - it'd be nice wouldn't it?

Like a Curate's Egg...

I don't know how many people are familiar with this expression - like a curate's egg - good in parts...
Basically it means a situation or item which is good in some parts but rotten in others.

That's pretty much where I feel we're at with the younger two boys.

After the total devastation of the other week we saw the paed for N. There's not a heck of a lot anyone can really say or do now. We're switching N to a different ADHD med - Strattera - which according to all the doctors doesn't have any effect on appetite. However on my reading from Medsafe and later the actual packet insert decreased appetite is second on the list, second only to constipation which is a significant, existing problem for N - and which can have it's own negative effects on appetite...

His ADHD is actually under pretty good control with the dexamphetamine so we didn't need to do this and the risk profile for the Strattera is much higher so if it doesn't work then I, for one, would be happy to move him back.
That said though it's not a controlled substance, we can get repeats without needing a new script and it's once a day dosing instead of 3 times a day so there are some bonuses there too.

I have done more and more reading and research on N's situation, plotted the last two years weights and so can marginally see where the surgeon is coming from. The anger isn't white hot any more although I'm exceedingly disappointed in the lack of communication. The yo-yo act is one I ought to be used to really since he went back and forth for about a year with T as well. The frustration is still there though but largely directed at the agonising situation we find ourselves in. Even the paed said if the med change doesn't work and one more med added doesn't help then she'll certainly look at the correspondence through Health School situation.
N narrowly missed being admitted to the hospital for who knows how long when we saw the paed on Monday but we explained our reasoning for strongly not believing that was the best approach and she agreed. If we need to go to the drastic steps of the next med then I really want to push to get other supports to increase the chances of success as much as possible.

It would appear that N's situation most closely matches the diagnostic criteria for either "Feeding Disorder comorbid with a medical condition" - which can continue to exist after the medical condition (reflux and later food getting stuck in his nissen) is resolved, or "Post Traumatic Feeding Disorder". While the PTFD (google it - they really do call it that!)  often  has a one off event triggering it, it can be triggered by repeated GI insults as well and I'm really beginning to think that's where he sits. I've said for a long time he's scared to eat and afraid it'll hurt.
It might not get us anywhere but it's good to have a new term to search and I'm still doing heavy duty reading on treatments as that way I can have studies behind me to counter the surgeon's "studies say might help but might not" stance.
One of the vital and significant things to come from either of those diagnoses is that it is not an eating disorder and treating it like anorexia et al can actually make things worse.

And so that's the rotten part of the curate's egg.

The light, fresh and enjoyable part is to do with T and his eating!

Ever since he started burping a lot more a few months back and we felt the icy clutch of fear that the 'gloopies' were on the way back I've worked harder to get him to drink more of his formula. He seems more comfortable with fewer tube feeds and the burping levels seem to have largely decreased to more normal 6 year old boy 'because I can' levels!
Before he'd do strings of burps and then wind up groaning. Now he's full of grins and "Sorry, I can't help it!"

So I was slowly coaxing up the volumes with his Neocate during the afternoons as his programs on tv run longer then. He'd been drinking at least some of his Neocate every afternoon for about the past month and by increasing 10 ml every few days so I'm not pushing him too hard - and he's not freaking at an ever increasing glassful, which he was doing.

Anyone who has or had had a child with food allergies, especially dairy allergies, knows that while Neocate is a fantastic gift to mankind in terms of covering nutritional bases, it tastes vile.
Even the powder smells vile.

And so T's afternoon drink has been a bit of a performance - I measure out the formula, lace it with enough vanilla essence to turn it slightly brown and keep it really really cold. When it's time to drink we measure out the required amount into his special penguin cup and supply him with a straw. He also says that it only tastes good with chippies so he gets a small handful in a bowl. He has this process where he measures the chip against the formula levels and that determines how big a sip he's going to take - I think, I've never quite got the rationale behind this ritual. But whatever it takes to get the revolting stuff down him!

I've been slowly increasing the afternoon drinks and taking it from the morning tube feed volumes. I'd planned that once I got him down to only 100mls it wasn't worth tubing so I'd add it to his night feed. He was down to 140mls...

Monday morning and we were off to the paed for N. None of the grandparents have managed to come to grips with the tube feeds so I persuaded T into drinking his morning lot and promised him I'd tube the afternoon one then. He agreed and all was fine. Come afternoon and T announces there's no milk for him. I looked in the fridge knowing there was plenty of formula made up and light dawned...he meant pre-mixed with vanilla essence to drink.
He'd forgotten I was going to tube it.
I wasn't about to remind him but fully prepared to trot out the 'Oh I forgot' line if he baulked at any point.
And he drank the lot.

At that point I reminded him and told him how clever he was and wasn't it wonderful not being tied up to his pump!

And since Monday he has drunk both 'feeds' everyday. We've agreed they are 'drinks' now not feeds because he's not being fed them.

This is a massive break through because he's had two tube feeds a day since that dark dark day in Oct '10 when we realised just how badly we were losing the fight and he needed extra regular nutrition because he just wasn't getting enough to cope.

I'm still working towards swinging it all to the afternoon, up to a 200ml max, because we're hoping to be able to send him to school! We've found a school, class and approach which we think will work well for him. There are still a lot of hurdles to jump to get him there but one of the biggest was getting him off tube feeds in the day and we've done it! We do need to get rid of the morning drink totally due to needing it to stay cold but we had a huge boost in that direction this week with a massive 500g gained in 11 days!

So not content with losing the day tube feeds (and saving me a good hour each day in feed supervision and clean up) he's also scored a total volume decrease as well. He's only needing 90ml in the morning thanks to the decrease and is up to 160ml in the afternoon - so it's all within reach.

His total solid foods are still a long way short of normal for his age but increasing as well and considering he's grown 5cm in the past 8 months as well as gained 3kg in that time he's making really good progress!

In T's case the light at the end of the tunnel really does seem to be the end of the tunnel. We may even have to start thinking about his "Bye bye Pump party"!

We're thrilled, he's thrilled and so was the dietitian today.

It would have been an altogether fabulous appointment today if I hadn't asked how many calories per day N should be getting. Quite apart from the fact that it sounds like a totally unattainable 2300 cal a day when she plotted his current weight on her chart her immediate response was "sh*t!"
Um, yeah, I guess it's nice to know I'm not being paranoid after all - and maybe a re-referral at least for a one off assessment of where N's at might be a good idea...

And so life is definitely like a curate's egg...