Finding out Piper would be on the spectrum was scary at first, you hope for the best but expect the worst. It’s hard not to focus on the negative side when all we see and remember of autism are the extremes. The future appeared difficult, “what if she never talks?” or, “how can she go to school?” After a while, we figured out that the most important thing is ensuring Piper feels happy and loved. What more does any parent want for their child? Once you come to that realisation then finding positives becomes easier. 

A lot of the most creative, forward-thinking, innovative people throughout history would have been on the spectrum.  They are able to use their mind in a different way to most, often with extreme focus. Experiencing the world around them from their own unique perspective, sometimes with heightened senses or cognitive ability that is difficult to deal with, they can create/discover/do amazing things. We just have to help them find their comfort zone so they can find their niche.

Yesterday was our meeting with myself, my husband, Autism NZ, & Moira from Porse. Pipers educator Jenny wanted to attend and seemed upset I didn't want her to.  I explained that I wanted to see how Moira would react during this conversation and that if she attended this session, I strongly believed that Moira would push all her buttons to the point where Jenny would possibly (out of anger) quit right on the spot. I promised to tell Jenny everything that was discussed and she needed to trust that I believed her, and that we've entered this discussion for Piper and for her. They were our main topics of interest in this discussion. 

I entered the meeting with an open mind trying to give Moira the benefit of the doubt. She had over a week to prepare for this discussion and already seeing how she reacts - I knew this face to face meeting would be nothing short of a CYA backpedaling and blame game since Jenny wasn't present to defend herself.  

Long 3 hour meeting short - This lady was a piece of work! All she did was lie and push blame on to Jenny exactly like I knew she would. Moira took no blame for anything! Stating "I never used the words Crossroads, I don't even say things like that.. I mean what does that even mean?" The whole session was Moira trying to cover her butt and we all watched with disbelief as she dug her web of lies deeper and deeper.  It was apparent she knew that her actions were not only illegal but discriminative. I was also appalled how she had blatent disregard for any such feelings for Jenny - and had no problem blaming her for any and everything.

Some things happened this morning which I won't discuss but, lets just say the lengths this lady was going through to try and cover herself and what she said to Jenny left me no longer able to keep quiet about my thoughts to her.  I needed her to know that everything she spouted yesterday I knew was BS and then highlighted how I knew.  I just couldn't stand watching this woman anymore.  (And to think she's been employed with Porse for so long! APPALLING!) 

Here is my email to her after our meeting: 

From: Harvey,Erika 
Sent: Saturday, 1 June 2013 3:39 PM
To: Moira @ Porse 
Subject: Thank you for meeting with us

Moira, 

    It was nice to finally meet you and thank you for agreeing to the discussion yesterday 31/05/2013.  It was nice to have clarification that PORSE Tauranga would still place children with Jenny even if she had Piper in her care. Also, I'm happy you were able to understand from Autism NZ that Piper shouldn't be segregated from others and placed in 1x1 care instead she needs to be with and around other children. 

During our discussion you expressed you did not know much about Autism or understand it.  In New Zealand around 1 in 80 children are diagnosed with Autism everyday and if you think of the "undiagnosed" children the numbers are even higher.  I'd hope it would be important to PORSE, yourself and your staff to understand ASD (Autism Spectrum Disorder) as it is becoming more and more prevalent. It will also help your Educators and Nanny's become more efficient in their roles as they may recognise ASD behaviour in an "Undiagnosed" child therefore being familiar with how to approach and care for the real needs of a child possibly on the spectrum.  Jenni from Autism New Zealand speaks to Home Educators, Nanny's, as well as daycare's, preschools, and various other organisations and places to discuss ASD.  Should you or your staff ever truly want to understand more about it please do engage her. 
Jenny Tonga has had discussions with Jenni from Autism NZ as she wanted to learn alongside us to help care for Piper in the best possible way she could.  

In our discussion yesterday some of the points you stated were: 

1) You stated Jenny expressed to you that it was too stressful for her to take on more children when Ben left for school because of Piper. It was this discussion you had with Jenny Tonga that lead to the discussion of the 'options' I had received.

•  If (as you stated) Jenny expressed to you she could not handle more children because of Piper why would she ring PORSE to ask for more children when Ben left for school?

           It was after her call in to PORSE that you came to discuss with her (what I call ultimatums) you would word as 'options' to discuss with me concerning Piper.  

2) You said "I think what Jenny needs is just support really" 

• You are correct in this statement.  However, the support she needs is NOT from us because we've been there to support her.  The support that you find she needs is from PORSE.  You will also find this in a feedback form where she engaged PORSE asking for this support. On our end Jenny Tonga has been reading and learning right beside us. She's met with Jenni from Autism New Zealand and we all work together trying to understand what makes Piper unique and how to help her communicate her frustrations. 

3) Your "May visit document" was very interesting and to be honest a slap in the face. Which is why I haven't acknowledged it.  

• If you honestly 'believed' you had "thought" you sent me that document from your May visit, why wasn't it referred to on our phone conversation that Monday morning 27/05/2013? On that call you admitted that things were not done correctly and were empathetic to this.  After our call around 9am I emailed Jenni from Autism NZ with my notes from speaking to you and expressed I felt we were moving in the right direction. 

• At 2:48pm that same day I received an email from you (Miraculously) stating that you had written and addressed everything I brought up in our phone conversation conveniently in an email you "thought" you sent.  "Egg on my face!" 

• This demonstrated to me that the reason you called me at 8am Monday morning was a cheap attempt to try and cover yourself before the requested meeting for Friday 31/05/2013. It was this coincidental document that made me realise your concern for ringing was to find out: 1) What did I know & 2) Where did I think the shortcomings had been so you could go back and contemplate how to cover your bases.  If you had "thought" you sent that email you would have said "Erika, I'm so sorry - did you not get my report from my May visit?" This was not brought up nor mentioned. 

This has become immature and appalling at the lengths you will go to cover your own bases and thats been apparent by your actions and passing the blame.
At the end of the day my interest is around my daughter and Jenny's livelihood, end of story.  If my interest were to get you in trouble or point out discriminatory behaviours to incriminate you (or PORSE Tauranga), trust me, I wouldn't have asked for a meeting with you. It would be much easier and more efficient for me to have a discussion with one of the directors of PORSE while in Auckland during the week. Because of my job my network in Auckland and New Zealand is extensive which makes New Zealand a very small place. 

Here are a few videos I mentioned in our meeting that I would send to you.  They are extremely interesting to better understand ASD.  
Have a nice holiday weekend and lets move on.  
Understanding Autism - http://www.katiecouric.com/videos/temple-grandin/
Carly's voice - http://www.youtube.com/watch?v=vNZVV4Ciccg 
 I once read that Autism is NOT a tragedy. Ignorance is the tragedy.  

Kind Regards, 
Erika Harvey


**UPDATE** So, things are now back to normal. Piper is still with Jenny and Porse has no longer caused any more issues.  
Piper's Mama 1 / Discrimination 0
We've been giving Piper a vitamin/mineral supplement and I have to say we've been amazing at how well its working.  It probably helps that she's getting more vitamins since she is so picky about textures in food. It is true health will have a lot to do with helping her make progress. Most of all, the biggest improvement we've seen is she's trying to communicate.  We're hoping she'll get there soon - but no doubt our little miracle will! We've been taking courses to learn how to try and push her to use speech or have a form of communication which should help ease the violent outburst and aggression when she's having a tantrum or becoming overwhelmed. 

Here is her trying to say cooking!!! (This is Mothers Day - 2 days before my birthday)
What an amazing Mothers Day and Birthday Gift!! PS: You'll notice Piper grabbing Dan's face to make him look at her.  This is from us making her look at us before we'll do anything for her. Working on that "Genuine Eye Contact" We're getting there!!! She's doing amazing!! But I find it hilarious that is how she now addresses us hahaha... I'll be working on my computer and she will come over and grab my face and make me look at her in the eye.  OH I LOVE HER!!!! SMART BEAUTIFUL LITTLE GIRL!!