Open Letter to NZ Prime Minister: Jacinda Ardern
10 April, 2018
I didn’t expect to be here. To be honest, I don’t think any mother expects to join this club that I’ve found myself in. You see, I was just like you once. I was at the top of my career eagerly awaiting my scans to know everything was okay with the miracle I had growing inside of me. I remember that first feeling when she moved and how I’d lie awake at night imagining the fun we’d have together. The family adventures we’d go on, the friends she’d make, answering all those silly questions kids have about life. When I was 6 months pregnant I saw a child screaming and hitting his mother while I was out shopping. The mother spoke calmly and asked if he wanted to leave. I couldn’t believe she didn’t even discipline him for acting like that! I knew I’d never be a bad parent like her, when my child was born.
At this stage of my pregnancy, I was just like everyone else.
Piper came in to the world unexpectedly with my water breaking on 1/1/11 and before we knew it, she was almost 2 years old. Suddenly, as if someone flipped a switch, she became lost inside herself. She stopped copying words, could no longer grip a spoon, and started crawling instead of walking. It’s a feeling you can’t describe when your gorgeous, perfect child goes from hitting all their milestones to hitting themselves and others. When you try and catch their head before they slam it against a concrete floor while expressing ear piercing screams of pain for hours, for what seems like no reason at all. People stare and make snide comments behind your back assuming you just have a brat as a kid and I'm a bad parent. The close friends you have slowly disappear, and your antenatal group no longer invites you to play dates. Not because they don’t want to, but because your child is constantly unsettled and it’s probably easier for you that way. Your whole life slowly starts to fall to pieces and you’re left wondering how you even got here.
The hardest part of motherhood though, was when I officially received Piper’s diagnosis of Autism. We immersed ourselves in education unlearning everything about parenthood we knew. We enrolled in various workshops and met others who were on their own journey through the spectrum. But no one could prepare us for what would happen once our daughter turned 5 years old and we needed to think about where to send her to school. At 5 years old Piper was still in nappies, had violent outbursts, would strip all her clothes off when she became overwhelmed, was a flight risk, couldn’t communicate, and was not only a danger to herself, but other students and teachers as well.
We were extremely lucky to receive high ORS (Ongoing Resource Scheme) funding, but people who had never met her only allocated 10 hours of support a week. This was inadequate for Piper and the school, given there are 30 hours in a school week. She couldn’t self-manage the other 20 hours… The school had try and find funds to make up the difference when my daughter first started due to the severity of her needs.
We sought a review of our ORS countless times but were denied. Eventually, I was forced to leave the career I worked so hard to achieve. The financial implications to our household has been drastic. With only 10 hours of support for Piper, and no after school or holiday programs in Tauranga for children with special needs, it was impossible for me to continue my career.
A million questions go through your head when you find out you’ve moved in to the special needs parent club. You try to figure out how it happened, only to realize it doesn’t matter because you can’t change the past. The only thing you can do, is focus on the future and that is why I’m writing you today.
Since April is Autism Awareness month, I wanted to explain what life is like when you become a parent to a child with Autism. Most of all though, I wanted to talk to you, mother to mother so you can put yourself in our shoes, as you eagerly await the birth of your first child. Truth is, there are 65,000 kiwis on the autistic spectrum and more being diagnosed every day, and with estimates being 1 in 4 students need some sort of support in school, the chances of experiencing this first hand, is pretty high.
I’ve seen some massive flaws in the system that should be addressed, not just for children with autism but for any child that needs additional support. I understand how impossible it must be to try and splice limited funds in such a way to please every needy group, however ‘children’ were a central focus to your campaign, as they should be for every voting New Zealander. I’m tired of the blame game between a National led Government and a Labour led Government, only to find our pleas for help become a publicity stunt with the children of New Zealand paying the price. We must unite, to bring material change to life in a way that will matter.
“Only a Labour Government can deliver the resources that schools and parents are crying out for and we plan to invest an additional $4B in education”
“I say there are clear signs of a government that has its priorities all wrong. Labour will redirect funding to frontline staff working directly with schools and children. Every child in New Zealand deserves to get the support they need so that they can succeed in education. They aren’t getting it under National, they will get it under Labour.”
“Re-carving the same size pie amongst a growing number of needy kids will simply result in more going hungry. It’s time the National government woke up to the damage their underfunding is doing to kids’ lives and futures.”
"Our goal is to uncap the ORS funding and make sure that every child in our schooling system has a right to learning support that they need and that schools are supported properly, and that those who work in our schools as teacher aides are supported and funded properly and actually have pay equity within the system they are working in."
If Schools have a legal obligation to create a truly inclusive education system, what funding model is required to achieve the dream?
As a business consultant, I learned that the school my daughter attends is under huge financial duress due to the current model. It is a Decile 2 School, with a role of 390 students from over 12 different cultural backgrounds and experiences a wide range of socio-economic disparity. It also has arguably one of the highest number (24) of ORS funded special education students in the country in a mainstreamed school, in addition to High Health, RTLB and special education and behavioral support requirements etc. The school’s success in assisting their ORS funded students, (to which they refer to as their ‘treasures’ because they have added so much joy to their school) is actually sinking them! With their deficit this year totaling $-118,482.26.
They follow their legal obligation of providing an inclusive education to all children, never closing their doors to a child with special needs, while other schools find ways to manage these high need, ‘expensive’ children by expelling them for disruptive behavior, forcing many parents out of work and in to homeschooling.
I'd like to talk to you about the numbers:
It’s my understanding a school receives $18.47 per hour before the deduction of GST, holiday pay, sick leave and ACC leaving $15.90 as the actual per hour cost allocated (less than the new minimum wage). Although the funding rate hasn’t changed in many years, Teacher Aide rates increase every year widening the funding gap between what schools receive to pay for teacher aides, and what they need to pay in teacher aide salaries. Many schools top up the funding gap by using their Operational Grant, or even fund-raising via their parent support groups, but that still isn’t enough to cover the deficit at my daughter’s school.
The average teacher aide wage at my daughters’ school is $19.47 per hour due to the specialist skills some students require, leaving an average deficit of $-3.57 per hour, per student. Paid over 45 weeks of the year, including holidays for their large team of Teacher Aides. This means the school will have the deficit of $-118,482.26 to meet their commitments for their students who require additional support over and above the allocated funding this year.
This school has truly become victims of their own success, with my daughter proudly one of their success stories. In the two years she has been supported by this school, the change has been drastic.
My once angry, non-verbal child no longer takes her clothes off in public, and can be found each morning on the school radio, or singing songs at assembly. She is obsessed with Maori culture and participates in Kapa Haka and has most recently joined the schools singing group. The school participates in RDA (Riding for the Disabled) and she can be found at the top of their website demonstrating her sweet and loving nature, and is an example of how drastically a child can improve when fully supported by an inclusive education system. As much as my daughter learns from the other students, they also learn from her and understand that we are all different, but all special in our own ways. Since this school is so successful at polishing its treasures so their individual brilliance can shine, they are now attracting more and more children who require learning support. Parents have heard about this school and have started to move into the school zone so that their special needs children can attend. In some cases, they only bring their ORS children which increases the financial burden even further.
I know there probably isn't a golden bullet to solve this, but if we continue to do the same things and expect a different result, then we are mad. I would love to see a task-force established that includes representatives from finance, principal's from especially affected schools such as the one mentioned above, teacher aides and a couple of parents like myself. As a business consultant, I’m used to looking for new models to solve old problems and I’d be willing to work with you and others to get the job done!
Please let me know when it would be convenient to meet with you so we can truly start to work together and make the difference that was at the heart of your campaign.
I look forward to hearing from you.
Please help share and sign our petition asking the House of Representatives investigate the allocation of funds.
Many of you know the journey we've been on with Piper, but what you may not know is how much music has inspired her life. My once shy and solo child is now demanding attention with her love for music and being on stage. Here's a couple of my favourite moments from February and March of 2018 when she surprised us all with her talent!
Piper in the Red Square singing Wairua Tapu
These lovely gentleman noticed Piper flapping and singing as she watched them play music. One of the men we had seen previously and she was obsessed with his guitar and he kindly offered her the microphone.
Piper belts out some Whitney Houston
Piper shocked everyone when she read the lyrics on my brother's television of Whitney Houston's "I will always love you" The reaction of the room was amazing but this.... this part was my favourite.
Piper's First Paid Singing Gig
Okay, so maybe someone just tipped her a $20, but in my book... that's how a struggling artist gets their start. Here's her first performance with a live band!! Who would have thought!?!?!? Thank you so much Las Margaritas and the band "Priscilla and Little Rickie" for giving Piper an opportunity to perform on stage with you. So much love for everyone who has been so supportive on our journey!
Some days for us it seems the only predictable thing about our daughter Piper, is her unpredictability. Yet, that seems to fit in to the life that my husband and I have had since the beginning of our relationship. At 26 I was engaged, had a great job, and in a blink of an eye everything changed. It was April Fools Day, and my doctor confirmed that the biopsy from the lump in my neck was positive, "You have Cancer" he said. I fell to the floor in disbelief, this had to be a horrible April Fools joke. Unfortunately, It wasn't. After my surgery, my Oncologist told us that having children could be difficult and prepared us for the worst. I remember Dan (my now husband) saying "That's okay, as long as you're cancer free, I don't care if we can't have children" The news of potentially never having a child, hit me harder than the news of finding out I had Cancer. Yet, our daughter's unpredictability and determination started as soon as Dan and I decided to start a family 4 years after I was in remission. It was April 2010 and without any special attention to detail, we were pregnant. In that moment, April changed from my Cancer month to the month we were going to start a family. At 34 weeks my waters broke and we welcomed Piper (all 3lbs. 10oz of her) to the world, at Tauranga Hospital.
She developed like most children hitting all her milestones like crawling, walking, started copying speech and babbling, fed herself, made eye contact, smiled, and all the gorgeous things babies do as they start to grow up. However, we started to notice that she stopped hitting those milestones and instead started to regress backwards. I realized that from age 18 to 24 months Piper didn’t hit any new milestones, but she slowly stopped speaking and coo'ing, she no longer made “genuine” eye contact, she seemed to never listen to us when we’d speak to her, was content by herself (preferred it), wouldn’t let us read to her, her coordination changed, she stopped being able to feed herself, didn’t pay attention to things like puppies, babies, or people, and started having tantrums where she would physically harm herself and us. To any parent, especially new parents, this type of behavior is hard to watch and even harder to parent, especially if you don't know why its happening. You start to feel like you're a bad parent, or perhaps you've done something wrong, you seek advice from other parents, read about parenting to see where you've gone wrong to no avail. Piper’s violent outbursts and tantrums seemed random at first, but we soon started to identify patterns to them. We started to notice that these meltdowns were mostly occurring while we were out of our home. Doing errands or participating in Antenatal Coffee catch-ups or home visits, new parks, restaurants, new vehicles, etc… Since Piper couldn’t speak it (only babble) so it made it hard to pinpoint the who, what, when, where, and why's of her tantrums. Marriage is hard in general, but the stress on marriage when you're dealing with a child who can't communicate to you, is harming herself, charges at you to hit you, cries during her tantrums like she's in pain while she's hitting you or herself, puts an even bigger strain on a marriage. Throw in the inability to go out as a family or even find a babysitter to have a date night alone, and you basically have the recipe for a potential disaster. I remember my husband and I in bed one evening crying because everything was so overwhelming with Piper's behavior. We struggled trying to identify what her triggers were, without her speech it was like being a detective and going out in public was a constant gamble if we’d even get to finish what we set out to do. She didn't find enjoyment in things other children did, so even finding activities that would keep her occupied wouldn't work for us. Yet, the hardest was how we felt around other parents and people. The stares we’d get as Piper would have a tantrum, the chats behind us like “If that was my kid I wouldn’t be putting up with that behavior” or the countless comments people would make to us directly, or to our daughter, were heartbreaking.
We sought help with local GP's and were told not to worry, that this does happen and we shouldn’t be concerned. “Some kids don’t develop speech until their 5” one doctor told us. Yet, it was at her 2nd birthday party with the parents from our antenatal group, that I quickly observed that Piper had become noticeably different from the other children. The next day we had a family photoshoot planned for family photos at Ferguson Park. We had never been to Ferguson Park before, but Piper loves the outdoors so we were excited and she was in a terrific mood that day. We did everything you’re supposed to do before a photoshoot – she had a nap, she was fed, had clean nappy, and it was a gorgeous day. As soon as I took her out of the car, she wouldn’t even put her feet on the ground and immediately started having a tantrum. This poor photographer stayed with us for 5 grueling hours to try and capture a photo for us, and she got some. However, It was this family photoshoot that prompted me to seek a specialists opinion. I think as a mother you have this intuition deep down that something isn't right, and even though many doctors told us this was "normal" behavior, I knew in my heart something was wrong. I remembering feeling horrible taking her to a specialist, even my husband said she was okay. What if I was wrong? What if she doesn't have Autism? Here I am, her mother, the one person that is supposed to have her back, and I'm the one thinking she isn't society's version of "normal" what kind of mother would that make me, if I was wrong? I found a specialist who works with children with Autism and it was determined (after a long process) – that our daughter had indeed been fighting her own battle all along, but it was a battle with herself and its labeled Autism Spectrum Disorder or ASD. It started to become clearer as we went on this journey that situations like new places, certain tones of voices, lighting, and sounds would be some of her biggest triggers for a tantrums. The best way to describe how we parent our child with ASD is similar to how you would parent your child when they have fallen down. They seem complete opposite, I know. Yet, a child with Autism in a tantrum is because they are hurt. Something is hurting them, so they react differently. They don't have tantrums to get a toy, chocolate, or get their way. They have a tantrum because something has happened and they have become over stimulated and it hurts.
Autism doesn't have a "look" so when you see a child who looks like they are just misbehaving and the parents aren't disciplining them like you would, it is likely that this family is also on their own journey through the autistic spectrum, and some parents may not even realize it yet. We hear comments all the time like "Your daughter doesn't look Autistic, she's too pretty" or "My child used to do that too, she'll grow out of it" as lovely as these comments seem, they don't make us feel better about our situation. Like most parents with an Autistic child, we feel alone because the people who we think we can talk to, don't understand and give us those same lines. Do you know how hard it is that my daughter and I don't have things in common? I look at photos of my friends with their children and I'm honestly jealous. I want to take my daughter on a mother daughter date, go to the movies, have a pedicure, talk about school, or what she wants to do for the day or on the weekend. But, right now I can't. We're not there yet, and maybe we won't ever be and I have to be okay with that too. Sometimes what we envision for ourselves, is nothing but a dream in to the unknown. Hopefully, you understand I'm not saying I don't love my daughter, I do! Piper is the most amazing child I know. She's beautiful inside and out, she has talents that I wish I had, she has taught me so much about love, myself, and most of all patience, that i'd never be able to repay or thank her for the woman she has helped me become. I see the amazing beauty in her diagnosis and that she finds beauty in shapes and numbers, sees the best in people, memorizes number plates of cars, and has been accepted for who she is by children and parents in Montessori school which she now attends. As we have evolved to parent our daughter in a way that she needs to be, its opened a lot of doors for her which is why its so important to raise awareness about Autism. Her anger is going away because we now understand that we can't "fix" her because there is nothing wrong with her. This is who she is. We can't stop the tantrums from happening but, we can be there while she's going through it, let her know that we love her, we understand her, and we don't care how many people stare or what they say, to us and to anyone that knows her like we do, she is perfect and we hope one day other people see her for her amazing spirit and unconditional love she has inside her, and not the tantrums they may witness. So, even though I'm sad there are no pedicure dates, or quiet lunches enjoying each others company, and I'll probably never have to watch Frozen, or take her to Disney on ice, I'm blessed to be her mother and I hope one day she can tell others about the great childhood she had where we didn't have to do anything special except spend time together. There is a saying, “Once you’ve met 1 child with Autism, you’ve met 1 child with Autism” because each child can be at a different points on the spectrum, which is also why so many children are misdiagnosed or un-diagnosed. In New Zealand it is estimated that ASD (Autism Spectrum Disorders) is approximately 4x as common as cerebral palsy and 17x as common as Down’s Syndrome, leaving ASD touching the lives of over 40,000 people and their families in New Zealand alone. So, we need to talk about it - talk about how it affects us - how it affects your beliefs in parents - and how when you see a parent struggling with their child to think outside the box and that perhaps you should ask if they are okay instead of staring and talking about them.
First I'd like to apologise for the disappearing act since my last post. I'm sure you've already figured out that the news we received wasn't what we had hoped. The biopsy showed that my cancer had returned and in June 2014 I had surgery. I'm feeling better now and so many things have happened since my last post.
Where do I begin? I guess I'll just start with the big moments. I have been spending countless hours with Piper and we've been working a lot together. I can say hands down a vitamin supplement has truly helped which I think is due to her lack of vitamins in her daily diet due to food textures. To us she's made drastic improvements but, it will be a lifelong commitment.
The biggest changes... okay! 1) I'm happy to say Piper is starting to try and verbalize, she is still considered non-verbal because she is unable to make words. But, this is still HUGE progress!! I remember this phase when she was younger and what soon followed was communication, so I have hope we're heading back in to that direction. 2) We have her enrolled in Montessori! Can you believe it? This Montessori in Bethlehem where we live has been really amazing and agreed to give us a shot. I think its important for Piper to really start to be around other children. It's only part time, but the school, the teachers, and the children have been fantastic!! That is the part about this journey that makes it special, when you find people who truly want to help you instead of put you and your child in the "too hard" basket. We couldn't be happier and either could Piper. I can tell she is LOVING IT and learning so much from being around the other children! 3) One the BEST decisions we have made was placing her in to Equestrian Therapy with an amazing charity called "Riding for the Disabled" These have been huge things for us and have all helped contribute to the amazing success we are finding with Piper. I've placed the video below from her first assessment to see if it was something she would be able to participate in. I'll be honest, we didn't think she would be able to do it because she doesn't follow direction, or hold on, and was worried she'd have a tantrum and scare the horse since its a TOTALLY new environment with new people, new animals, new lighting, new new new new. But, to our total surprise...... well, I'll let you watch for yourself!!!
Today I've got the call that most people dread, but is all too familiar for me, my family, and unfortunately my husband. "We think you may have cancer (again)" This year (2013) marks my 5th year of remission since my surgery at Vanderbilt Medical Center in Nashville, TN. I remember everything all too clear from that time in my life. Many mis-diagnosises at various hospitals that my insurance covered - then I pushed for a biopsy of what they believed to be a "Goiter" in my neck when nothing else was adding up. I've always had this crazy intuition when it came to my health (even Pipers - no one wanted to believe she was ASD. A mother always seems to know) That Biopsy the doctor swore would be 'nothing' but a 'peace of mind for me' came back positive for Cancer. After the Nimrod doctors I was dealing with - fate (and family friends) lead me to Vanderbilt Hospital and more amazingly in the arms of a Dr. James Netterville. One of the best head/neck cancer surgeons in the world. That time of my life now seems like a distant memory and it was such a whirlwind of emotions. It was also the reason behind my first "project" AnonymousWifeDiaries.com a place where women could go when they felt they couldn't talk to anyone about what they were feeling. Cancer is a bit of a crazy one. As the "patient" you try and act happy and positive all the time because if you act as scared or as sad as you may feel - your family and friends will start to act the same (how depressing). So, if you stay positive in public - they in turn do the same. It keeps us all sane. Except for at night time - when we "the patient" go over and over in our heads what we wished we would have done, how we have children that need us, husbands that surely can't do those mommy moves with the scraped knees and broken hearts that will come. We women are a powerhouse! We are strong when we know others need to be and when we are alone - we find our time in solitude to be weak. We find our time to cry it out and to pray to God asking him to just "let me be okay this time and I promise......" I'm sure we've all had that chat to God or whoever will listen up there whatever your belief is.
These routines are all too familiar for me. So, now being faced with the possibility of the CRAPPY "C" word popping up in my life again has me thinking differently this time. This time - I'm ready for whatever life wants to throw at me. I'm stronger, I'm wiser, and now, I have a family and a little girl who needs her mommy because she has a lot of work ahead of her as well. Together Piper and I have already proved to be a powerhouse - we are both medical mysteries, we defy the odds, we excel when we should give up, we are strong headed, and we always get what we set out to achieve. Have I cried today? Yes, I have (Don't tell my parents. Luckily they are too busy to ever read my blog lol) So, if you see them - don't mention this post. (Thanks in advance) You know, it feels good to cry, its cleansing to the soul. But, unlike my first go round with the "C" word - this time I'm not scared, and I have this crazy feeling that everything is going to be fine. Tomorrow I have my next round of testing and another biopsy. So, hypothetically speaking - lets say I get the call that says:
"Congratulations - you're fine, sorry to scare you!" This is what I'm (obviously) hoping for. But, you know what the thought of "C" returning has done for me? Its kicked me in the face as a wake up call to say "HEY! LIFE IS SHORT ERIKA!! REMEMBER, what we talked about last time??? Do what you love - work for/with people you like - have friends/family in your life that add value - forget those that bring you down and cause drama - and most of all make sure you spend more time with those that love you instead of breaking your butt to try and save money to go home to the states to visit on top of trying to have a nice home, nice car, and nice things. I've realized if people want to see us - they are just as capable (if not more so) to save up their money and travel across the world, like we do. Not to mention -putting Piper on a plane now that she is almost 3 with ASD is pretty Traumatic to expect her (and us) to partake in that kind of adventure. Yes, she did great at 5 months & 12 months but, ASD and 3 years old (with limited speech & understanding) is really pushing your luck and our sanity. Second - all the material things I had as a kid I'm striving for so Piper has the life I had when I grew up is ridiculous. Growing up in New Zealand vs United States (TN) are VERY VERY different. Average income is the same 50k - yet the median home price is almost 400k where we live. As opposed to the states 50k and median home in TN 150k (I read its 120 - but we'll go 150). Food, gas, clothes, electricity, everything is cheaper in Tennessee. So, my point is, what am I doing? My life is 1 huge ball of stress. Stress in the home with all Piper's therapies and courses I'm taking, Stress learning the ropes of ASD and dealing with people who don't understand it or think we're bad parents because they have no idea what parenting an ASD child is like, Stress being a single mom (since my husband lives out at sea about 5 days a week) Stress working so hard for a company who's VP is one of the rudest people I've ever met and has added absolutely no value to my life just increased the stress level. So, this blog is a vent/rant - to remind anyone who is reading this - Life is short! You never know when it will come at you with vengeance. So appreciate these little hiccups. Whether or not the diagnosis comes back as "C" or not - What has changed is me, no matter the outcome. I've always been a positive person - I see the good in people - the good in life - the good in the bad - the glass half full. But, I think I needed a wake up call that I'm taking on too much for all the wrong reasons that in the end - adds no value to myself, to the legacy I want to leave behind, and most importantly to my family. So, this is my note to myself to reflect on as a reminder that life is short - If I'm lucky enough that this isn't "C" word - I need to appreciate the wake up call in my 30's and enjoy more things in life, stop stressing about things I can't change, and most of all.... enjoy everything around me that brings me happiness.
On the other side if I get the:
"We're sorry we are back to the "C" tango" - Well that will stink I've always wanted Piper to have a little brother or sister and that will be pushed out for a while. But, aside from that - the above still applies. Life is a lesson - if you're not learning - you're not living! So, yup - this will totally STINK - but I guess the world needed a wake up call. Perhaps its me that needed it - or someone close to me - or someone reading this. You never know the reasons for things but 1 thing is for sure... there is ALWAYS a greater plan than we know. So trust in that and all will be fine. As I'm writing this blog this song has just come on Pandora Radio (Below) I felt like it was for Piper and I. Our theme song for each other.
I read a blog today that seemed to hit how I feel at times, yet some missed the mark a bit for me. (You can read it here) Now, I understand that when people try to "relate" to what we're experiencing with Piper most of the time it's what I call "comfort talk" where they are trying to show their support for us. Other times, I find myself getting overly frustrated when people without raising a child with ASD try to give me or my husband advice by what they saw on TV or how they know someone, who knows someone with an ASD child and begins to tell me what we "should be doing" or "trying to do." I'm not blind to the fact that people around us want to help us or think they're helping us by pushing other people's story as a fact or how they know someone who was like Piper and now they're 5 and all this time it was a "misdiagnosis" of autism. These stories do not give me hope, it makes me think 1) You're being ignorant 2) You're in denial and basically telling me I'm stupid, a liar, or that I don't know my own daughter. Autism sits on a broad spectrum and finding 2 children identically the same isn't as easy as you may think. Sure, they all posses similar characteristics, but what works with one may not work with another. I've heard different reactions to Piper's diagnosis many say "Piper is too cute to be Autistic" and "She's so happy that's not Autistic" or "Lots of children have tantrums, that's normal for her age" These remarks are the exact reason so many children go undiagnosed in this world. Perhaps the line between Autism and a non ASD child is so blurred due to how society/media deem Autism to look, now there's confusion. Autism is not black & white and I do believe that with proper parenting, education, and nutrients, a child on the spectrum can lead an absolutely normal life. To be honest, I probably would have been one of those parent's that wouldn't have known Piper was on the spectrum if it wasn't for the fact she was unable to talk like other children her age. I could have come up with many excuses for her toe walking, her fascination of objects, music, noise, textures, tantrums, anxiety in new places, her comfort in playing and being alone, and the countless other characteristics I noticed at her young age - other than Autism. However, I think that as a mother we have this instinct when something isn't right. So, if you do question your child may be on the spectrum there is no harm in taking them to your pediatrician or specialist to find out for sure. I promise you may worry about the stigma of having that term with your child, but, without it they cannot get the proper help they need and you won't be getting the proper education to care for them. Parenting a child with ASD is unlike that of parenting a "non Autistic" child. I can get in to how its different, but if you really want to know you can message me or google it. (lol)
So, I ask that if you don't have direct experience other than TV and people stories please don't feed us any of those. Now, I should probably clarify what I mean in a less 'general' sense than above. If you know someone who has experienced things like us, has a child with Autism, you're related to someone with Autism, or you're just wanting to share with us that you understand what we're going through - that isn't what I'm talking about. I love hearing about other families like us or people letting us know they're thinking about us. What I'm talking about is telling us we're doing things wrong by suggesting we should do things a different way - or trying to tell us we need to parent Piper like you parent your children because in your opinion, Autism isn't really that different. I'm specifically speaking about trying to tell us how to parent our child or telling us Piper isn't autistic because of whatever experience you've heard or seen from someone else. It's not comfort stories we need, because we're not sad about her diagnosis. I know there are some who would rather conform to society's definition of "normal" but, we aren't. We've discovered the vast majority of people know nothing about autism or realize that children and adults on the spectrum can be HAPPY the way the are and that is a real shame. As a society we need to appreciate autistic people for who they are, not who you wish they were. Einstein was probably autistic as well as many other people throughout history (Steve Jobs, Bill Gates, Beethoven etc), so instead of saying sorry perhaps one day you'll say 'Thank you'.
I think we're one of the lucky ones, we see life in a totally different way than before, we have strengths we never knew we had, and as parents Dan and I have found that we make an amazing team in figuring out the best way to care for our daughter. In addition, I'm very happy that we started this process of diagnosis at such an early age giving Piper a head start in learning the skills other children pick up naturally from observation. Things children normally pick up on, we need to teach Piper. For us, the most difficult is teaching her how to communicate & our desire to help her learn to do that through speaking instead of actions. I feel like if we can master this, it will make the other aspects of her Autism clearer for us to help her because she can tell us what is making her uncomfortable, irritated, or upset. If you want to talk to Dan and I about Piper - we'd love to talk about her. If you want to show us support, treat us like you would anyone else. :)
As a parent of an ASD child, our journey through the spectrum continues to be fascinating! Piper finds so much excitement and interest in things that myself and others take for granted and we watch as she examines every object with such shear interest and expertise. Since before Piper was a year old she loved music, in the beginning I always joked with Dan that she was going to be a singer like me. Piper and I both shared a love for music, however, unlike I had hoped, she didn't care for my singing. If I sang to her or with a song she would get angry and make her grunt noises which would equate to "Shut up Mom!!" Since Piper can't communicate verbally, she communicates in her own way which consists of a combination of grunting and running towards me with arms a flying. At that moment, I knew my singing career was over for good and sadly, it took a 2 year old toddler to deliver the horrible news I'd never make it in the music industry.
(Piper's love for music is amazing, but we've come to understand that's because she is likely on the sensory piece of the spectrum. Which by the way, we get the official spectrum placement diagnosis end of August once all of the Doctors/Occupational therapists/and various other medical professionals finish observing and testing her.)
Faced with the fact I don't have the voice of an angel like I had thought, I knew we needed to find a different approach to calm Piper. When a child on the spectrum has a tantrum there is nothing you can do except ensure your child is in a safe spot and be there when he/she finishes to let them know they are loved. (Well, that's what we do) However, there are certain "tricks of the trade" we've come to pick up on that have worked for us.
Piper was fascinated by Blues Clues. We remember her being 6 months old and how it would hold her attention and when she started teething, was upset, or having one of her episodes - Steve from Blues Clues with his "songs" would quickly calm her. So, we made sure any smart phone or DVD player we had was equipped with Blues Clues Episodes for those moments we needed an immediate calming effect especially attempting to get out of the house with her. Now that she's getting older it seemed "Steve" wasn't really doing it for her as much as he used to. One night we were watching "The Voice - Australia" and a young Australian girl named Celia Pavey was auditioning with the song "Scarborough Fair" Piper ran all the way to the Television and was immediately mesmerized. As soon as it was over she grabbed the remote control and gave it to us (Pause/Rewind live television she knows all too well) Move over Steve there is a new singer in town. Pipers obsession with Celia is fascinating! We have her audition on all of our devices - on our TV - at her grandads house - everywhere. We've found out its not the song - we've played different versions of it for her and she hears the music and rushes over, but, as soon as she hears the voice & recognizes it's not Celia, she goes back to what she was doing. Another funny thing is that Piper's Uncle Ryan, has a girlfriend that resembles Celia with her hair color and skin tone which Piper has an instant connection with. She just loves her! We may need to teach her the words of Scarborough Fair for Piper's 3rd birthday! (I posted the above video to show Piper's addiction to the tone of her voice)
I know most children find music calming as well, but Piper's ability to match tones even at a young age has always fascinated us. She has a FisherPrice keyboard that has colorful buttons on the top which play songs - and she will hit the keys to match the tone of the song on the keyboard and when she gets it wrong it upsets her to no end. What we once thought was a funny quirk about our daughter has come to be one of the most extraordinary things about her. She could just turn out to be our little Beethoven!
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.
esterday was our meeting with myself, my husband, Autism NZ, & "Mary." Pipers educator "Sally" wanted to attend and seemed upset I didn't want her to. I explained that I wanted to see how "Mary" would react during this conversation and that if she attended this session I strongly believed that "Mary" would push all her buttons to the point where "Sally" would possibly out of anger quit right on the spot. I promised to tell "Sally" 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 interest in this discussion and that anything she said to ruin her character or lie we would question.
I entered the meeting with an open mind trying to give "Mary" 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 "Sally" 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 "Sally" exactly like I knew she would. "Mary" 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 "Mary" 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 Sally - and had no problem blaming her for any and everything. So, I felt even worse for "Sally" especially because in New Zealand "Sally" couldn't venture on her own - as she has to stay with a company in order to receive the government subsidies that come to assist with the other children in her care. It was such a hassle to change companies and she loves each child she cares for.
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 "Sally" left me no longer able to keep quiet about my thoughts to her. I needed her to know that all her crap she spouted yesterday I knew was BS and here were my reasons why. I just couldn't stand watching this woman anymore. (And to think she's been with this company for so long! APPALLING!)
Here is my email to her after our meeting:
Sent: Saturday, 1 June 2013 3:39 PM
Subject: Thank you for meeting with us
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 "COMPANY" would still place children with "Sally" 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 and if you think of the "undiagnosed" children the numbers are even higher. I'd hope it would be important to COMPANY 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 “undiagnosed” ASD behaviour in a child therefore able to better approach and care for the real needs of a child possibly on the spectrum. Autism New Zealand speaks to Home Educators, Nanny's, as well as daycares’, 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 them. "Sally" has had discussions with Autism NZ as she has 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 "SALLY" expressed to you that it was too stressful for her to take on more children when her oldest child she cared for left for school because of Piper. It was this discussion you had with "SALLY" that lead to the discussion of the 'options' I had received.
My concerns were (and have been)
1) Having Autism NZ explain ASD and address any issues or concerns you may have with Piper in Sally’s care
2) Sally’s livelihood that she would not be punished for having Piper in her care and COMPANY would continue to place children with her.
Given that my concerns have been addressed from last night’s discussion I’d like to move on as its becoming uncomfortable watching the lengths you will go to cover your own bases and pass the blame. Clean slate. So, here are a few videos I mentioned in our meeting that I would send to you.
Please do watch these they are not too long and extremely interesting.
I hope you have a nice holiday weekend.
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.
**UPDATE** So, things are now back to normal. Piper is still with "Sally" and "COMPANY" 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. 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!!
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