Monday, July 15, 2013

Starting School

Erik loves school.  He loves it!  I knew he would.  He loves riding the bus each morning and afternoon, and he is loving the stimulation that school provides.  He loves the routine and opportunity to play outdoors and on the play equipment.  He loves the music sessions and OT sessions.  It really has been the best thing for him.

On the first day of school, hubby and I decided to drive him in ourselves, and bring all the girls too.  This way, although they would go late to school, they would get to share the experience of their brothers' first day.  Unfortunately, the Autism-specific school is quite separate to the mainstream one the girls go to.  So they have missed out on all those exciting and proud times when a younger sibling starts school with them.  Bringing them along on his first day was a way to compensate for that in some small way, and they loved it.

Four kids in the back of the van.

Wondering where we are going.

In the schoolroom.  Girls will smile for the camera, Erik has more important things on his mind :)

Hubby has been the one to get up early and get Erik ready for school.  I cannot begin to tell you how much that means to me.  I am not a morning person - never have been.  Four children and ten years of managing babies has not made me a morning person!  If that hasn't done it... it ain't gunna happen!  But further to this, and perhaps more importantly;  Erik is a growing boy.  He is now up to my shoulder in height, and weighs almost half of my own weight.  He is becoming more difficult for me to handle, simply due to his size.  Most of the time, I am ok;  ie. When he complies with all activities and attends to the task.  But when decides to be difficult, or when he is simply not attending, I am really starting to struggle.  Brushing his teeth has become all but impossible for me.  This is where daddys strength comes in.  We simply need him to take on part of Erik's personal care just because the boy is getting too big for me.  (This entire issue deserves a post of its own.  But I will try to stick to the topic at hand).

Having three children at two different schools presents a logistical challenge for us, particularly because they are all of primary school age.  It's not as though we can send off our teens to get to school on their own while we tend to the younger ones.  Because they are all still young, they need to be supervised on their way in.  However, Eriks' school has a private bus service at no cost to the parents.  How lucky are we!  You don't have to take up on it, but of course, we did.  It means that all we have to do is get him to the pick up/drop off point, which is a lot closer to home than the school is.  The only problem is, we have been allocated one of the earliest pick up times and latest drop off times.  Erik needs to be at that bus stop by 7:18am.  And I don't get to pick him up until 4:42pm.  That is a very long day for him - (though he doesn't seem to mind).  So with the girls finishing at 3:30pm, this creates a major time gap for me in the afternoons.  I lose about one hour everyday just in time wasted because I can't really do anything substantial in between collecting the big girls from school and waiting for him.  It has turned out to be a bit of a pain really.  But in the end, we are grateful for the service as a whole, and I decided to try and make the best of the 'lost' time by leaving earlier than necessary to collect the girls and having a coffee with my mum while waiting.  It's good, because I get to see her a little bit everyday.

The bus.

Putting Erik on the bus each morning always leaves a little flitter in my heart.  Oh, I know.... letting your little one toddle off to school like a big kid is always a bit sad for mum, but this boy here... he is my baby.  He is so much more vulnerable than most other kids.  And to put him on a bus and wave goodbye...?  Eh.  It is hard.  I didn't do that with the girls!  And they aren't autistic!  But, we put our reservations aside, and let him take the bus anyway.  After all, they have been doing this for 30 years, so they would understand what it is like to deal with an autistic kid, right?  And Erik really does love it.  I knew he would.  He has always loved car trips, and anything with proprioceptive input.  The bus is a fabulous way to get a daily dose of that.  Twice!  

The school has a really good curriculum.  It is totally different to the sort of thing you would learn at a mainstream school, yet they still manage to do things related to numeracy and literacy and all the basic general topics that primary schools need to do.  Just not in the conventional way.  They fit them in around learning basic skills that normal kids can just pick up along the way.  Erik is learning how to communicate with PECs again.  He is learning how to actually sit for a group session - (believe me, this is a big deal for us!)  He has learnt how to get his own lunch box out of his bag and open it.  He is learning how to engage better, and, from the first week I could see such a difference! 

I love it when a toy manages to capture his interest!

From that first week, he came home so bright, so much more 'with it'.  He would stop me and look into my face, making eye contact and smiling at me.  He is echoing more, babbling more, repeating more things that he might have heard somewhere at some stage.  The second day of school, he was already wearing his bag!  I tried quite a few times to get him to wear his own bag during the kinder year, but he wouldn't have a bar of it.  These teachers are amazing!

Bag on his back = Win!!

They have taken him (and all the class) on excursions several times already.  To know that someone else has taken my son out and about without me is so far-out for me.  You have to understand;  I NEVER let this boy go with anyone but his father or myself.  For good reasons.  So knowing the teachers do this really makes me nervous!  But we gave our full consent at the beginning of the year, and my oh my, we have seen the benefits!  My beautiful boy is so much more compliant when we go out and about now.  He will hold his fathers or my hand willingly, and walk along with us with very little trouble.  I'm not saying that outings are now completely free of meltdowns and absconding, but those incidents are greatly reduced.  To the point where I have been able to take all four children out to get groceries, by myself, on two occasions these school holidays.  Amazing!

From early on in the school year, Erik and one other child in his class were identified as high priority for OT.  To know that they were able to see this need in my son, without me having to point anything out, was so reassuring.  They really know what they are doing; my heart is at ease.  On the other hand - and this is the bittersweet thing about having a child like Erik - it makes me a little sad to know that my child is one of those who needs intensive and specific attention.  But the point is, they are providing him with what he needs.

More and more I am satisfied that sending my son to this Autism specific school has been the perfect choice for him, and I couldn't be more grateful.  I love those teachers and aides - I really do.  I am grateful for my country, for the way they seek to include, assist and always look to do better.  Oh, yes, we could always do more.  But what we have is already a blessing.


Monday, July 8, 2013

Enrolling In School

This post is a little overdue.  Ok way overdue.  We are already halfway through the year!  Still, I think I need to record this, if not to help someone else out who might be going through the same thing, then at least for memories' sake.

It's another long read.  And mostly boring details.

I started the enrolment process early last year.  Around April actually.  The system is so involved that many parents get lost trying to work out what to do.  I was very lucky to have someone who knew how things worked on the inside, and an excellent support worker through EI to help guide me and reassure me along the way.  No special favours, just good and timely information.  Knowledge is power as they say.  Nevertheless, I still encountered dramas and stress along the way.

Step 1.  Enrol at mainstream school.
The first step was to enrol at our local school, just the regular way.  So I did.  I went to the same school my daughters go to and placed an enrolment form.  I mentioned as I handed it in that I was, in fact, looking to send my son to a special school due to his autism.  So they knew from the beginning that this process needed to move further.

After this, there was an interview with the campus principal about the enrolment, just to confirm that Erik needed further assessments associated with the enrolment process.  It was quite some time before I heard back from the school regarding when those assessments would be.  This upset me a bit, as I had made sure to get in early so that my application would be in by first round.  However, we were not to begin assessments until Term 3.  I was very concerned at being put off until then.

You see, places at the special school are limited.  And often, parents do not know if their child has been accepted, until after the school year has already begun!  Not the parents fault, but the system is such that it just works out this way.  Very stressful for us.  Which is why I wanted to get in early, so that I would know for sure whether Erik was in or out by the start of December.  At least that would leave me enough time to arrange an alternative if he was not accepted.

Step 2.  Assessments.
There were three assessments that needed to take place; a speech assessment, a cognitive assessment, and a questionnaire completed by his kindergarten teacher (Vineland).  All had to be less than two years old, which meant that the reports I had from the speech therapist and psychologist at diagnosis time, were already past date.  Appointments were arranged, both to observe Erik, and to speak with the primary carer - me.

I was warned that this would be difficult for me.  Emotionally confronting.  The reason being that we had to look at my beautiful child from the perspective of the worst case scenario.  There would be a focus on the negatives here, not the positives.  Not the potential.  Only the lack and disability.  I was ready.  I was fine.  Sad, but fine.  I really didn't think anything we discussed would be different to what we see every day.  In a sense, we see the worst possible scenario every day anyway, and so, I am already accustomed to seeing 'the worst'.

The speech assessment was fairly straightforward.  Erik does not speak.  There are no words.  There are no sounds that symbolise words.  There is no communication whatsoever, including picture exchange or augmentative devices.  My son cannot communicate except by crying and screaming.  There was no confusion about those answers, the situation here was clear to everybody.

Erik's kinder teacher struggled to complete the questionnaire.  She had been told to answer according to his behaviour in the worst case scenario - Erik on a bad day.  This should not have been difficult though, as his behaviour was fairly constant, and was always at the severe end of the spectrum.  The problem for her was that she had been trained to see the best in children - to see their potential and report on the positives.  So telling it like it is for Erik was hard for her, and very discouraging.

It wasn't until I saw the report for the cognitive assessment, that my heart sank.  Bottom line; it could not be administered.  He was that severe.  And so, our psychologist had to estimate his cognitive abilities:

" attempt to ascertain Erik's cognitive capacity could not be made at this time.  Based on Erik's behaviour and autistic features, as well as extrapolating from his Vineland scores, it is estimated that his intellectual functioning currently falls within the 'Mild-to-Moderately Intellectually Disabled' range."

Wow.  Just wow.  He is so bad they can't even assess him properly.

On the other hand, 'Mild to Moderately Intellectually Disabled' - that is better than I expected!  I always thought there was more inside than people could see.  There is something in his eyes... a bright but elusive spark.  Intelligence and understanding.  Funny how some tests just can't pick up on that.  I could though.  And that one small line - 'Mild to Moderate' - made me smile.  It confirmed to me that I knew my own son well.  I just didn't expect anyone else to see that.

 Part of the Psychologists report.

Step 3.  Educational Needs Questionnaire.
Once all these assessments were completed, and Educational Needs Questionnaire needed to be filled out.  This was to be done in a meeting with the Psychologist, a representative from the Department of Education, the Principal of the school we originally enrolled at, and ourselves as parents.  This was where we agreed on a score for several areas to present to the Department of Education (DoE) as an estimate of his overal needs.  This score would go far to determine the level of funding the DoE would provide for him throughout his school years, and whether he was in fact severe enough to really need to attend a special school.  Once that was decided, a notification would be sent to the relevant school and an offer of placement sent to us.

Part of the ENQ.  Erik needs constant supervision.

The Waiting Game
Right throughout this process I had stressed to all involved that I wanted this done A.S.A.P, because we wanted to be sure of Erik's placement.  In my mind, the autistic school was the place for him, and there was simply nowhere else I wanted him to go.  But if he wasn't accepted there, we would certainly be fine to look into other special schools.  The one thing I knew for sure, was that mainstream school was not for him.  It would be completely pointless.

And so, the ENQ was sent off to the DoE.  Now the waiting game begins.

And I waited.  And waited.  And waited.  And then I began to worry.  The time was creeping by and I had heard nothing.  And so on the advice of my wonderful EI worker, I called the school to see how the application was progressing and if they had heard anything.

Good thing I did.

The Drama
When I called the school to enquire on the progress of our application, I was shocked to hear that they had already been contacted by the DoE, but had decided not to inform me.  The reason being, our application was returned due a missing signature.  A missing signature.  One signature.  Missing.  But, apparently, I was not to worry because it was all being sorted for me.  Oh, yes, by the way, it meant we missed the first round cut off.

"Livid" is a very mild word to describe how I felt about this.  Not only about the situation as a whole, but more so that the school deemed it unnecessary to inform me of this development.  Long story short, we discussed this error of judgment on their behalf and the principal apologised profusely.

But back to that missing signature.....  Way back when Erik was first diagnosed, he had a team of specialists assessing him.  One member of that panel had to be a psychologist, and it was his signature that was missing.  Apparently, he did not sign his diagnostic report.  The school tried to contact the clinic where diagnosis was made, but the psychologist had long since moved on from there. Unfortunately, the clinic staff were less than helpful, and would not forward the details of where this fellow had relocated to.  What made things more difficult, was that he was, in fact, from New Zealand, and quite possibly may have returned there by now.  Seems like we were not going to get this signature.  You can imagine the frustration I (and hubby) were feeling about this time.  I felt like my sons whole future hung in the balance, all over this one stupid signature.

Suddenly, it was vitally important to me that he attend the Autism-specific school.  No other school would do.  The threat that he might miss out on a place due to these delays made me realise that this was far more important to me than I had originally thought.  I began to stress hard.  I cried, and prayed, and poured my heart out to those people I knew who were connected to the school and who understood the process.  I received nothing but the most gracious support from them.

In the meantime, the school principal had tried to contact the head paediatrician who was on the diagnostic team.  She had a previous history with this doctor when he had treated her own children for something many years ago, and they were on good terms.  Nevertheless, it was his receptionist that took the calls and relayed the information, as he was too busy to fuss with an annoying issue like this.  His response was, that 'no such signature was required at the time'.  End of story.  But the DoE would not budge.  They insisted on that signature.  It didn't matter that Erik's case was clear to all - including the DoE by their own admission! -  They wanted that signature.  Red tape much?

I cried and stressed and cried some more - there was no way we could get a hold of that psychologist to get a signature from him - what were we going to do?

My EI worker sent an email to the Autistic school, my SIL called her colleagues at the Autistic school, and our playgroup facilitator, who also worked for the Autistic school, spoke to the principal there. In case you're wondering - yes, I felt this was overkill.  But they insisted, and did not mind.  And so, word was sent back to me that a position was held for him in the school and I was not to worry.  They fully understood the red tape that frustrated everybody, and knew without a doubt that Erik qualifies and would receive funding (eventually).  I was encouraged to go ahead and enrol him anyway, and not to worry about the funding.  In fact, they even sent out the paperwork so I could do so.

This went a long, long way to allaying my fears.  I couldn't thank them enough for going out of their way just to reassure me that he would have a place.  I prayed with a grateful heart thanking God for these wonderful and caring people.  I just found it amazing that all these people were so positioned in my life at just such a time, so that I could find this reassurance - not taking for granted that many other parents simply do not have this privilege!

In the meantime, the assessing psychologist came to the rescue with the application, writing up a new and current diagnostic report for Erik, and signing it, so that the application could move ahead.

April last year.  An Easter treat for my babies - the chocolate is bigger than their heads!  LOL

And In The End....
I assume the funding all came through.  But to be truthful, I have still not heard back from the DoE or original school as to what his funding level is.  We received an offer of placement from the Autism-specific school, and the rest is history, as they say.

He has been there two full terms already, and is loving it.  And I would very much like to know what our funding level has turned out to be.  Maybe I should chase that up......