ECDP Cut Backs - Getting An Assessment

It seems that getting an assessment done isn't as easy as I would have thought.

The problem lies in the fact that children aren't usually 'verified' at such a young age.  Usually special needs kids are verified near the end of prep year (when they are between 4 1/2 and 5 years old).  The Queensland Department of Education defines this as:

     Verification is the process of confirming that a student’s identified impairment 

     and the associated educational impact which require significant education 

     adjustments meet DET criteria. The verification process involves data gathering 

     on both the impairment and the educational impact.

Since I can't get a proper verification done I'm trying to get our ECDP guidance officer and Connor's therapists to do ABAS and screening tests to give me some idea of what he is capable of and what he really needs.  Unfortunately no one is keen.  The kind of testing I need really isn't designed for non-verbal 3 years olds.  Connor's speech therapist thinks Connor will bomb using the testing methods available, but he also thinks Connor is a smart little cookie who isn't interested in playing the game and following test rules.

An ABAS was done that showed Connor doesn't fit the mould.  It's not immediately apparent that he needs Special School, but they still have no idea what he does need.  His speech therapist has let me schedule a meeting with him next week to see if we can do some sort of meaningful test.  So that is something at least.

Qld Ed have really put parents in an impossible situation.  Our kids are too young for us to understand what they need and where they should be educated (special school or supported main stream school), but we have to make the decision before they are ready because now there is no support and no help.  And we have to put them into schools that are under resourced and unprepared for kids as complex as our kids are.  This situation is not going to go well.  They are failing our kids and they are failing us.

My stress levels are certainly going up, but I'm still making phone calls and trying to push forward. 

Connor's Little Steps

Connor has his own way of communicating with the world and showing affection.

He has always loved cuddles but he doesn't put his arms around another person he just leans on you. This afternoon he came and sat beside me on the couch, took my arm and put it around him and snuggled in.

He's just recently started doing kisses too. Every-now-and-then he'll actually use his lips and give me a kiss.

It's just so beautiful seeing him starting to reach out more and more. I think Kindy is helping him a lot in this area.

One of the little girls in his class seems very fond of him. She spotted him and called out the other day when we were picking Merry up from day care. When Connor saw her he ran right to her up and smiled. She reached out and touched his face and then he reached out and touched her face back! I just about started crying on the spot. I wish I'd been able to video it.

ECDP Cut Backs - Main Stream School

Andrew and I took Connor down to our local school yesterday to meet the HOSES and see what it was like. It's a lovely school and all the staff were very friendly and seemed nice. They have their own ECDP (which I didn't know about) and of course an SEP (special education program) which is why we were there.

In short I think they were a bit worried by the level of support Connor will need. While they said they would of course take him if that's what we wanted, they are very interested in the assessment results and more importantly what the special school say. I think they are hoping he will be going there instead.

The teachers are only just starting to find out about the ECDP cut backs, the fact that some teachers and aides will be sacked, and that there are policy and procedure changes being put in place to cater for it all. Most families still haven't been told. The HOSES have a meeting with Qld Ed on the 7th of May where all is to be revealed.

My plan is to wait until then, get all the information I can from all my sources and then launch my email and petition campaign. I have been talking to a variety of people to get an overall picture and I hope that other families will also send in their stories, to try and get some exposure on the real impact this all has.

I find the hypocrisy of all this truly amazing. As they make cutbacks that directly impact the education and well being of children with disability they are waxing lyrical about NDIS and Gonski. I have to question how much they really care and understand, and how much of it is a desperate ploy to garner votes in the upcoming election. And if that is true, then what will truly be delivered...

ECDP Cut Backs - What We Are Doing For Connor

I've had a few meetings since I last posted.  I've seen my local State member Jason Woodforth, I've talked to the local special school ECDP co-ordinator, and I've met with our ECDP co-ordinator about what we are doing for Connor.

Jason Woodforth talked a lot of politician speak, but did say he'd talk to federal members to see what plans they have for disability funding and schemes if/when the LNP win the election this year.  I need to send him an email outling my families particular story (to backup the discussion we had and put it in writing) and we will see what happens from there.  He did say he didn't think there was much he could do as the ECDP funding comes from the Federal Government who are of course ALP, even though the money is managed on a state level (by the LNP in Qld).  I left the meeting feeling like I'd not really achieved anything at all but I had gathered some more information.

The meeting with my local special school HOSES was equally unsatisfying.  She said there's nothing they can do and that this has been coming for quite some time now.  When I asked how I'm supposed to work out if Connor needs special school support or not (since we have to decide where our kids go BEFORE they can be verified) she said I can get him assessed via my ECDP and they can submit that paperwork to them.  So once again more work for me, but at least a plan was forming.

My meeting yesterday with our HOSES went well.  I told her we needed to do the assessment and she was happy to get that kicked off for me(the process can take up to 6 months!).  I also said while we are doing that I need to figure out what main stream school I should be looking at in case that was the best path.  She said she'd check my closest schools with SEP's.

That afternoon she called me with the closest and I called their HOSES to chat about Connor and work out what I can go down to see the school.

So the current update is this: I am writing some letters to go to my local member and also federal and state politicians, we are starting the process of getting Connor assessed to see what his school needs ACTUALLY are (since our 'education' department aren't interested in doing that), and I'm going to see local schools to see what they can offer and if Connor would cope in that environment.

I'm tired just writing it all..... :}

Queensland Education ECDP Cut Backs!

Yesterday I had a meeting with our ECDP HOSES (transalation: Early Childhood Development Program Head of Special Education Services).  The Qld Dept of Education has canned the ECDP program for children in the Prep year.  I am scared, upset and very angry.  But so you understand why I need to explain.

ECDP is a program for children from 0 to 5 who have special needs.  You don't necessarily need a diagnosis, your child just needs additional support and help.  Since in this age group most parents haven't been given a diagnosis yet that is a good thing.  

For the play group years (0 to 3.5) we attend a playgroup one morning a week during school term.  They have a very structured program so the kids do OT courses to help them with gross motor skills, craft to help with fine motor skills and other activities to help with learning and socialisation.  There is also time for free play where the parents get to stand around and chat.

When the kids reach 3.5 they move up to the Kindy level group.  At this stage they go two mornings a week and the parents drop them off instead of staying and helping.  This is also a very structured group and speech therapists and occupational therapists come along to work with the kids on a regular basis.


The classes are deliberately small, the environment nurturing and the teachers and aids are trained in all the techniques and strategies needed to best communicate with and help our kids.  It's a lovely way for our kids to get the idea of being around other kids and about trying to stay still a focus for periods of time, which is REALLY hard for them.


The final step is/was the prep year.  In that year the most common thing to do was split placement (some went cold turkey but that was rare).  That is where the child did ECDP for two days per week and then main stream prep for as many other days per week as they could cope with.  Main stream schools are required to support special needs kids and are given additional funding for 'resources' (that is what Qld Ed calls an additional staff member).  The 'resources' are not allocated per child they are just allocated across the whole school (because the funding is sooooo limited).

The main idea of this year was to gently transition our kids into the shark pit of main stream schooling. And now it's gone.  Now our kids are going to get dumped into the middle of a room of other kids with little or no additional support.  I'm afraid our kids our going to get kicked out of classes and either shipped off home or put in a room by themselves with the concept of educating them a non-existent priority.  Welcome back to the age of institutions!

The reality is there isn't enough resourcingin Qld schools.  Kids get left to their own devices in a class full of other kids most of the time and  their teachers aren't trained in special needs.  There are supposed to be travelling OT's visit the schools but they can only get around to all the kids a few times per term at best.  And just because they recommend equipment and processes for that child doesn't mean they get it.  The schools don't want to spend their funds on that kind of thing and the teachers don't know how to help the kids use the special tools.  The aids that are allocated can only get around to all the classes for so many hours per day and there is often more than one special needs kid in a class.

I could keep rambling, but I shall stop now and prepare for my meeting.  Since yesterday I have made a number of phone calls and today I'm having a meeting with my local member.  I'm not going to sit back and let them do this without making them understand what the ramifications are!  Our kids count and our kids matter and for the sake of the bloody budget surplus they are taking their education away from them.  Not to mention the stress they are putting on us and our kids.  If the environment is too hard our kids are going to loose it.  They won't cope and we will be forced to pull them out of schools for their own emotional well being. 

So off I go to war.  If I have to protest on the steps of Canberra I'm going to get these idiots to listen and take responsibility!

The Easter Bunny Caper

It is funny the things Connor has 'blocks' with.  One of the big things is he just can't figure out how to bite food.  He can chew something in his mouth, but if it's too big to fit into his mouth it is completely beyond him what to do with it.

I spent some time out in the garden this morning and when I came back in to clean up and have a shower I found a chocolate bunny on the laundry basket.  Connor unwrapped it (he looooves chocolate) but then couldn't figure out how to eat it, so he'd left it in the bathroom.  As soon as I broke the bunny into pieces and put it in a bowl he ate nearly the whole thing.

Craaaanky....

A small vent then I will crawl out of my cave and face my children.

After Connor emerged hysterical around 9pm we found a soggy puddle in his bed (we'd not removed a bottle of milk in our tired stupor earlier). So he got moved to our bed and resettled. That meant I got to sleep with tumbleweed and Andrew passed out on the couch. Ahhh the romance. :). Anyway Connor started the groaning around 4am. Even on the best of days I'm over his endless droning when he's actually still tired but is waking up instead.

The moral is I'm in a foul temper, the kids are running around the house like little waifs and I just want to curl up in a ball and sleep for a week. And of course since we are the house of pox all my carer support is cancelled for the rest of the week.

And now I've vented all that into the universe I'm going to make toast and tea. :)

Definitely Chickenpox....

Well I've learnt something new. You don't actually need to be covered in spots to have chickenpox.

Connor has about 8 spots on his ankles and legs and nothing else anywhere on his body. What he does have is intermittent low grade temps, lethargy, off his food, little vomits every-now-and-then, problems sleeping, and very miserable.

I have been suspicious for a few days that he might be getting it, but I didn't trust my instinct because he didn't have the spots you would expect. Turns out kids who've been vaccinated might not present symptoms as you'd expect.

I just hope we've not passed it on to anyone!

Now we have to wait it out and stay away from everyone. That means cancelling all carer support and no Kindy this week. I'm thinking a case of Gin and a Stargate marathon might be the only way to survive it.

Aaaaaaarrrrrrgggggghhhhhh!!!!!

1:30am I woke to Connor running around the house like a lunatic. When I'd fallen asleep at 10pm all had been quiet and peaceful and Andrew was watching a movie. Now Andrew was about to kill Connor who'd been up for some time apparently.

It's now 2:30am and I'm also about to kill said child who despite a clean nappy, melatonin, cuddles, threats and offers of milk is thrashing around the bed having a tantrum and threatening to vomit. As I mentioned, he's deteriorated back to this every night again for the past week. I was sympathetic at first but by now both Andrew and I are out of juice and desperate for some decent sleep. Surely Connor has to be too, I don't know how he keeps up this pace. It feels too late to break out Phenergan and besides we don't want to rely on that too much.

It's no wonder I can't string together two words during the day, the sink is full of dishes and I have laundry piled up like mountains around my bed. After night after night of this I turn into the walking dead by day (and poor Andrew is no better and he has to go to work). Of course it's my own fault, I wrote that stupidly optimistic post just over a week ago. I should have known better. *sigh*

What's worse is how depressed I get at times like these. Everything just gets so overwhelming. It feels like I am so alone and everything is in an endless futile circle. Of course I'm not, Andrew is here swimming upstream with me and that makes me lucky. There are a lot of couples who don't stay together through this kind of pressure. When everyone else has disappeared we have been able to keep getting stronger. It takes a lot of hard work and we are using the counseling services available to us to help work things through, and it's totally worth it.

Time to go, Connor is semi calm again. He's back to the 15min of quiet broken by some thrashing and wailing cycle again. Based on past experience this will most likely go for a few more hours yet before he passes out in time for Merryn to wake up.

Night!

Almost Chickenpox?!?

I got a phone call last week to say Connor's Kindy teacher has chicken pox. Not a call any mum wants to get but he is vaccinated so I hoped it would all be ok even if he got it.

A week later and no spots, so I guess he's fine...but. He has been really off colour all week. He's not sleeping again, and he's vomiting at the drop of a hat. The last few days he also seems to be a bit warm. I'm starting to think he has something but he really has no symptoms other than being 'off'.

At least if he had some spots I'd know what was going on. Needless to say we've broken out the Phenergan tonight after a week of being up all night with him we all need some sleep.

Night all!

New FXS Research Break Through

I follow the National Fragile X Foundation Facebook page (the US organisation helping spread the word about FXS and support research and education) and saw this article today: http://www.fragilex.org/2013/public-policy-and-legislative-advocacy/ground-breaking-genetic-research-gives-hope-for-potential-treatment-of-autisms-core-symptoms/

Of course I know it will be years before anything makes it to the general public, let-alone kids here in Australia but my heart certainly did skip a beat.  How amazing would it be for Autistic and FXS kids and families to have even some relief from the symptoms. 

I watch Connor stuggle everyday with learning even the simplest things, and trying to understand how to interact with the world around him.  I wish an easier path for him and the ability to communicate all the amazing thoughts and feelings that I know are swimming around in his mind.

Merryn is doing so very well with her development but I still see her heightened anxiety coming out and her struggle to learn this funny thing we call language.  It would be so wonderful if she didn't have to spend her whole life dealing with the anxiety and depression that so often plagues our FXS girls.

No matter what happens, they are my beautiful children, but if this research ends up making their lives just a little bit easier then I'm all for it!

What Blog?

So I don't want you to feel unloved, I often think I really, really need to get on my blog and write about what amazing/crappy/are you kidding thing just happened.  But quite often even the simplest things are just too hard.  There are days when all I manage is feeding the kids the 101 meals a day they eat, changing their endless stream of poo and watching taped episodes of Castle and NCIS.

So while I have big plans to be far more consistent with everything (weight loss, exercise, blog, housework, craft, etc) this year, I know you won't be surprised if I'm just..........not.  :)

But enough rambling, it's all about the kids and the kids are doing great.  We've had another sleep clinic visit, Connor has start Kindy and Merryn has started Day Care.

The sleep clinic visit involved me explaining that the sleep was exceptionally bad, that Andrew and I were both crashing from lack of sleep as our two kids spent all night fighting for our attention and we really needed to check out something a little more 'hard core'.  A new strategy was devised that involved Phenergan.  Basically we used it for a few nights running, then went to every second night and now it's used in times of need.  The result has been our kids learnt what a full nights sleep was and they have both responded wonderfully.  Merryn is practically a 7pm to 4:45am girl every night now, and Connor still has his bad nights and evening wanderings but will often sleep from 10pm through to 5am by himself.  I know people frown on using drugs, but in our case it was just what we all needed to establish a new and happier routine.  Cross fingers and touch wood we've finally turned a corner on the sleep issue.

Kindy and Day Care have been a revelation.  I was very panicked about them both going but with a few teething problems they are both thriving.  Connor is picking up some words and Mezy is having a great time running around with the other kids.

Well I'm going to have to cut it short there, there is heaps more to share but it's time to find some more food for my little Hobbits.  I'll be back soon to tell you some wonderful Kindy stories about Connor and some new classes we are doing to help the kids speech.