I will start by saying when Piper was over a year old we picked an amazing child educator to watch Piper during the week while Dan and I had to work. We didn't want to do daycare centers and this seemed like a perfect fit! They only have 3 children which would give Piper that social element, and the fact they did educational activities was a plus too!! Even more so, as we've been going through everything with Piper and her diagnosis our "educator" has been amazing and supportive. She's bought books, she's helping us with the therapies we're doing, even attending some of the classes in her spare time. She loves Piper as if she was her own grandchild. I'd like to point out - from the time Piper has been with this "company" nothing has changed. She's still the same child, only now, she has the stigma of "AUTISM." People fear what they don't understand and I have to say this "company" feared BIG TIME! I won't get in to everything - instead I will give you a brief of what I've been dealing with since Mother's Day & My Birthday (May).
So there is this lady, we'll call her "Mary". "Mary" works for the company we use which hires educators and Nanny's to people.
We've had piper with one of their educators "Sally" for over a year and "Sally" LOVES Piper to pieces! All the sudden Piper's educator (Sally) is told by "Mary" who works for the company that we've come to a "crossroads" and that when "Sally's" student starts Kindergarten they will not place anymore children in her care if she has Piper. Therefore ruining her livelihood. So, if we wanted to keep Piper in her care we'd need to do a 1x1 Nanny situation and pay more money. Or option 2 By the 22nd of June we will need to find a new place for our daughter. When Sally told us this she was in tears. I asked her "Do you want to continue to care for her? Or is she too much for you?" 'Sally' said "It would break my heart to not have her in my care, but I don't know what to do. If they don't place any more children with me I can't sustain my cost of living"
I decided to call a meeting with "Mary" because all the monthly updates I get about Piper from her have been nothing but rave reviews, so how are we suddenly at a crossroad? A crossroad is something you build up to - not something you just arrive at. I call a meeting with Autism NZ & "Mary" and send her a diary invitation a week prior asking her to meet with us. What "Mary" probably didn't understand was that we've been working with Autism NZ since the beginning. So when Mary opened the email invitation for a meeting the following week describing Autism NZ would be present and I would like to talk about Piper, she immediately went in to "CYA behavior." I placed a read receipt on the invitation (sent 17th of May) so I knew when "Mary" received it, and I was notified Sunday the 19th that she did (however, didn't accept). Monday morning 20th of May at 8am I receive this call from Mary saying "I heard you've been working with Autism NZ from "Sally" so I thought I would reach out to you because I feel like it would be a great idea if we all sat down together to talk about Piper" I responded with "Yes, that's exactly what I intended by the calendar invitation for Friday's meeting" Acting Surprised "Mary" says "Oh really? I didn't even know, I've been away on vacation so that is wonderful news" I let this slide because I knew she opened my invitation the following evening which is also the reason she called me at 8am on the nose. Also, I should point out Piper has been with this company for over a year and NEVER has "Mary" EVER called us, met us, or made any contact with us. All I receive from her are monthly updates about her 1 day visit with "Sally" and observing Piper. Our phone conversation was interesting and I honestly thought that "Mary" was trying to understand us and Piper. This conversation lasted an hour where she would ask questions like "What would you have wanted us to do differently" and "What all did "Sally" say to you?" etc... Everything I was going to address at Friday's meeting with her. I stated on the phone that there were no issues with our daughter and all of the feedback from her monthly visits said nothing which required we had come to a crossroads. I also stated that "Piper is 2, so how do you know what is classified as Autistic behavior or that of a 2 year old? How can you tell a difference between these tantrums only spending 1 day with her a month?" By the end of our discussion, I felt relieved - I thought we had made great progress and I emailed Autism NZ with an update a bit after 9am with the details from the call and I felt we were "Moving in the right direction" this Friday discussion would be a nice meet and greet and decision on steps forward. (So I thought)
I get an email from "Mary" where she covers things I mentioned on our phone call that morning in how I wish "COMPANY" had responded to us before coming to a "Crossroads". Then she PRETENDS that she had EVERYTHING written in a follow up email to me from her May visit CONVENIENTLY she forgot to send to me. This put me in a fury! I was so angry that someone could be so heartless and vindictive to actually use this 8am phone call to me and turn it around to Cover herself. I was appalled, angry, and to be honest extremely disappointed. I sent "Mary's" email to Autism NZ and they couldn't believe this woman! Especially because only hours earlier I had sent them an email from our discussion and what was covered. When I arrive to pick up Piper from "Sally" she says "I heard you and Mary had a nice conversation this morning and things are better?" I said "You know Sally, I thought the exact same thing until I got an email from "Mary" on Pipers "May" follow up that she "thought" she had sent to me." At the end of this bogus follow up "Mary" stated that her next visit would be that same day, which was extremely odd - because she has NEVER visited 'Sally' 2 times in 1 month (let alone weeks apart). I asked Sally what Mary did on her visit and she said "It was really weird - she would say things like 'this is normal 2 year old behavior or this is possible ASD behavior" I thought, what a weasel I said that on our call that morning how did she know what the difference was between the two she actually not only made a "bogus" report on Piper but she also made her "next" visit that same day doing the EXACT things I stated on our call. I asked Sally if she receives all the May visits from "Mary" after she writes them. Sally said she did, but she never received one for May about Piper. Kindly, I told her I'd send her a copy because "Mary" actually said that the reasons for the "COMPANY" has suggested Piper leave is because you feared you couldn't care for her and other children. When "Sally" read this email that I received for Pipers May Follow up, she was in tears! Saying "I've never said this! If this is true why would I ring the company asking them to give me more children when "student" starts Kindergarten? They told me they thought Piper needed 1x1 and I couldn't look after 'normal' children and a child with Autism, not me"
Its one thing to NOT understand Autism and honestly want to learn more about it - its another to pretend that you want to, only to try and use the words I say against my daughter. As my profession, I work alongside some of the largest companies in New Zealand assisting their CEO/CIO/CFO's with their business. This woman had no idea the connections I had across this country - let alone that if I wanted to - I could just as easily speak to the board of directors of this company on my next visit should I want to. But, I don't play like that - because I wanted to give her the opportunity to speak with me face to face. I decided we'd meet that Friday and just see what happens. I never acknowledged the below email or message she sent me. I thought I'd see how she brought it up in the meeting with Autism NZ - because I knew she would.
Sent: Monday, 27 May 2013 2:48 PM
Well I do have egg on my face, because when we talked this morning and you said you hadn't heard from me at all, I was a bit surprised, as I had sent (so I thought) my May visit report.
Checking back at my office, the email is not in the sent box at all, so my humble apologies. I must have got distracted during the process., which is not good, I know. I have attached it now.
I look forward to meeting you on Friday.
"MARY", Programme Tutor
Here is what was in the attachment - Titled "May Visit with "Sally"
Hello Erika & Dan
"Sally" related to me today how Piper loves to carry a stick around hitting various surfaces and listening to the sound made – this seems very much in line with what Dan was talking about with regard to his awareness of different sounds and tones. "Sally" says you are taking Piper to the Argos Gym sessions. I will be there next Monday, so I look forward to catching up with you then.
"Sally" expressed some concern to me today about being able to adequately give 1:1 time to all the children in her care, including any potential families who may come on board after "student" goes to school, bearing in mind that Piper needs more intense observation and support, and "Sally" wants to be able to offer her this. Perhaps it is something we could discuss together? I understand that you have the support from AutismNZ, and I would love to learn more about how we can best support Piper. For instance, typically at this age we would be beginning to set some expectations and boundaries, but I am not sure if that is appropriate for Piper currently.
Anyway, I look forward to hearing from you when you can, and I will do my best to fit in. I will be away on leave from next week commencing 21/5.
My next visit will be: Mon 27 May
Before we ever knew the diagnosis of Autism. I've come to believe that instinct is one of the best gifts we're given in this life and we should use it. As Dan and I are going through these various courses for parents dealing with Non-Verbal ASD children we're realizing that out of instinct we've been doing the things were learning now, with Piper. We've instinctually done the people games, the social pieces, pushing her to try and ask for items (stopping her from the grunt), but one of the best things I've realized we've done and I think its the most important thing (ASD or not) is we've always let our daughter be herself. We never forced dolls or other items on to her that we felt she should play with because other kids her age were or because society says she should. When beans, sticks, and balls made her happy, well, it was beans, sticks, & balls we'd get her. (Heck she's a cheap date) Another love of Piper's is our dog Jersey who is 35kg (70lbs) and is a beautifully bred MastiDane. For some reason these two have always seemed to just get each other. Perhaps its the fascination of objects and balls that has brought them to become best of friends. Jersey and Piper complement one another very well, the dog we once questioned may not be good with children, has become a natural mother. I remember our midwife coming to give Piper a check up at our house and as soon as Piper would cry, in charges Jersey to Pipers side, growling at the midwife, probably giving her quite a fright. Yup, from the beginning these two have been close!
When we started this journey through the spectrum, Piper had regressed after turning 12 months old and had hardly any vocabulary left. Where she once said "DADA" at 7 months she was no longer able. With the only options we currently have is hours and hours of therapy working with Piper to learn basic skills we decided to look in to a homeopathic option as well to incorporate with hours of working with her. We've started her on this vitamin and mineral combination that my dad found, the medical studies and trials were absolutely amazing...which to someone like me meant - probably bogus. I've always been a skeptic at heart, so, before we started this natural route trying to help our daughter we gave it to Piper's doctor to look over. I wanted to make sure that given her age, there wasn't something we were overlooking in this natural supplement. He gave us the "all clear" and stated that everything included in the vitamin was fine for her to take and essentially was good for everyone to take as it has the necessary ingredients to help support overall brain health and functionality. Currently, they are in capsule form so we're opening them and mixing it in yogurt to give to her. Lucky for us, the texture hasn't bothered her. Piper has now been on this vitamin for about 4 weeks and already we're seeing a decrease in her tantrums and she's paying more attention to us when we speak to her, so I no longer feel as ignored. She's also attempting to talk, something that we haven't seen her do in over a year!! Most of all she's now referring to me vocally and has mastered "Mama" a word that I never thought I'd hear her say. We have a long journey ahead of us, but, we're up for the challenge! We hope to defy the odds of the medical community and find a natural way to help daughter overcome the silence of Autism and lead a normal life.