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:
"...an 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......
xx
No comments:
Post a Comment