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.
With the diagnosis of Autism now confirmed, we've started a new journey with our daughter. This journey consists of learning and understanding how we can live in her world. Working hard trying to understand her and figuring out how we can get her out of the house having fun, yet comfortable for her where she can enjoy things like other children. Dan had been scoping a kids place in town and noticed about half an hour to closing time it was pretty much empty. This would be their first mission together. The person at the counter was less than pleased to see a Dad and Daughter come in 30 minutes before they were to close. But, Dan explained that this was an experiment and Piper was Autistic so he was unable to bring her when children were around. The teenagers working were confused, probably having no understanding of Autism but they were very friendly letting Piper have free reign over the entire place all by herself (and Daddy). Piper found the section with all of the balls - and sat there just exploring all the different shapes in the room (she loves shapes). She's stand on her head and look at things at all different angles. The quietness of the place was calming for her so there were no tantrums. Dan took her through all the different mazes and even down a huge blow up slide. She laughed & laughed making Dan climb and re-climb as he had to pull himself up this rope while carrying her in his arms. (What a work out!!) But the look on her face as she jetted down the huge steep slide was priceless. The giggles - you can't put a price tag on those. But, most of all she was out of the house and having fun!!! We're learning a lot about children with ASD and its absolutely fascinating and heartbreaking all at the same time. As a parent you worry about your child being made fun of in school or other people passing judgment because they don't understand Autism. I wish that people could look at the world like these kids do, they have this way about things. They use such focus and determination on certain objects I sit and wonder... what are you looking at so intrigued? I wish I could see what you see.
We've had Occupational Therapists, Speech Therapists, different pediatricians, and various other people in and out of our house the past few weeks all observing Piper and taking notes. From what we understand at this point, Piper will probably place somewhere in the sensory piece of the spectrum. They gave us a great understanding of what Piper is going through by 1 analogy I will share with you. "When Piper would have those uncontrollable tantrums, you are right when you say it sounded like a hurt cry. She is hurt. Certain noises will feel to Piper like someone is drilling through her brain. The pain is so severe to try and stop it she will want to hit her head because she doesn't know what else to do to get the pain to stop" At that moment, my heart broke in a million pieces for her, and I thanked God I never reprimanded her for those tantrums. I think the mother instinct is such an amazing gift and we should never deny it! For those parent's and people out there that see a child throwing an unbelievable tantrum, before passing judgment on their parents or that child. I want you to think that perhaps its not a bad parent, or a bad child, but, its a child with Autism just trying to make things feel better.
Today is the day we've been waiting for... Actually, I have been waiting for. Everyone else in the family seems to think today is the day I get confirmation Piper isn't Autistic and my paranoia will finally be put at ease. The drive to the Pediatrician who specializes in children disorders and mainly Autism was a nervous one. I kept thinking.... "What if I'm wrong? Then I'm a horrible mother for even thinking something is wrong." In my heart though, I knew Piper was going to be on the spectrum. I've heard different advice from people saying "Don't get her diagnosed. She'll grow out of it. You don't want to ruin her life with the stigma and title of Autism following her forever!" I decided Stigma or not, this was something I needed to do for her, for all of us. I needed to know if we're doing things right for her, I needed to know if I would ever hear her speak again. I sat down in this office with Piper waiting for the Pediatrician and she immediately wanted to go to places she wasn't allowed and right on time under 10 minutes a wild tantrum broke out. He comes out and says "Bring her on back, don't worry about the tantrum. Just place her on the floor and let her finish it" I always did that at my home, but to hear someone so calmly say that was like a breath of fresh air. He looked down at his papers in front of him, not even phased by the commotion being caused right behind him. "So, tell me, why are you here Mrs. Harvey" I looked at him almost sheepish "I believe my daughter may be Autistic, but I'm not sure because she looks at me and I read that most children on the specturm don't make eye contact" He asked me a lot of questions mainly about her birth and wanted to hear stories of why I've come to this conclusion of Autism. He observed Piper for over an hour as she played with toys, he 'tried' to examine her (what a fight that was), and he would have me do different things with her. At the end of a 2 hour session (almost movie like) he says "So, do you believe your daughter is Autistic?" (I think to myself, isn't that why I said I was here?) I answer "yes" and he looks at me straight in the eyes and says "So do I." I didn't cry - I got that out of the way when the lady that looks after Piper confirmed my suspicions after reading about Autism weeks prior. He then looks at me and says the most painful thing a mother can ever hear "You said you didn't know if she was Autistic because she looks at you. (He grabs my hand) What we look for is genuine eye contact, and in the whole 2 hours you've been here, not once has your daughter really looked at you. She's merely acknowledged you're there, but she doesn't give you genuine eye contact" He demonstrated this with another 2 year old that was in the waiting room. He asked this child to come in his office. "Brian how are you?" Brian looked at the doc and said "Fine" The doc then said are you with your mum outside? Brian "Yes" Okay, you can go sit down Brian I will be with you in a minute. Brian walks back outside. He said "That is genuine eye contact" Your daughter looks through you, not at you - she looks at you because you make a noise but she's not genuinely looking at you. She is in her own world." At that moment my heart broke in a million different pieces. I could deal with the diagnosis of Autism, but to hear that my daughter doesn't even "see" me... like really see me. There is nothing worse than that, and words can't ever describe how that felt.
Don't worry, he said the behavior is something we can teach her. I don't diagnose Autism, I can but I choose to let a team of 4 work together to do it so we can appropriately place Piper on the spectrum. You will start to get letters in the mail that will start the process they will do home visits, hospital visits, hearing tests, speech therapy, sensory observation, etc... He was very nice and said "Piper is one of the lucky ones, you've caught it early enough that we can make a significant impact on her life, and what children her age normally pick up on themselves, Piper will have to learn, you will have to teach her. But considering she has only just turned 2, this gives us a lot to work with." I walked to my car in a bit of a daze thinking "she doesn't look at me" in the car I kept trying to get her to engage in my eyes like that little boy did. It didn't happen. This is what made me tearful, not the diagnosis of Autism, but the fact my 2 year old precious miracle daughter doesn't truly look at me. Let the journey begin!
I remember Piper's first word at about 7 months, she said "Dada" we were so excited. She even started copying a bit and we have various video's before her 1st birthday where we'd capture these moments on video. These few words would soon disappear as we watched our child become lost in a world all her own. She started to ignore us and wouldn't move or acknowledge we were there. (I even got her hearing tested again) Piper tip toe walked, but we heard that was normal in children her age, however, when I would see other children her age I quickly noticed that my special little girl may be more special than we anticipated. I approached my GP (General Practitioner) with my concerns and he said "All children develop at different speeds. Don't worry, she was premature so she will naturally be behind. She's fine" I told him that she used to talk and now she can't or doesn't seem to want to and normal physical activities that other children are doing her age she seems very far behind. Again, the same story. I think as a mother we have this instinct and it doesn't let up, I knew that something wasn't textbook "normal" about my child. My husband thought the same thing as the doctor, I was over reacting all children are different.
The assumption of ASD came after Piper's Second birthday. We had other children here and I noticed a lot about Piper and how she was always wanting to be by herself, how when a baby came to the party she didn't even acknowledge it or notice it was there, she was in her own little world. In addition to that she would seek out activities that would excite her senses. (ie: smashing her face in to a pillow really fast over and over again) And she was constantly moving and hyperactive. We went to a park with a photographer for her 2 year old photos. Given the choice from the photographer of park or sand, I quickly stated that for some reason Piper doesn't like the sand anymore but she loves the outdoors so the park settings would be perfect!! We arrived at the photo location it was a gorgeous park with beautiful creeks, trees, flowers, and walkways. I couldn't wait to get Piper out of the car. As soon as I put her on the ground in this new park, she froze. Started throwing a tantrum and freaking out. Worried I swooped her up to comfort her. "Whats wrong?" If she could communicate I'm sure many things would have come out, however, we were left with this scared and fearful little girl. My husband has always been good with Piper and finding ways to calm her when these tantrums would start. We chalk it up to the terrible two's thinking WOW - right on schedule. Its like she knew that 2 meant tantrum time. Dan immediately takes her over to a creek because she loves water, hoping that may calm her down. We get bubbles out, trying any and everything for these 2 year old photos to work. We just couldn't understand why she was so upset, I mean we timed it perfectly. These pictures were right after her nap, she was fed, loves being outside, so what could the problem possibly be? That night when we got home it hurt my stomach to have the words come out of my mouth as I said to Dan that night "I think Piper may be Autistic" he seemed a bit shocked at that statement. He looked at me with endearment and said "She's perfect, she's not" I said I know she's perfect, but that doesn't mean she isn't. She had totally regressed and from the age of 1 until 2 she hadn't had 1 new milestone. No words, no new things, nothing. It was as if she was a 12 month old little girl trapped in a body of a 24 month old. She was having frequent tantrums but hers seemed to be triggered by noises, I couldn't go anywhere with her in public. It seemed like out of the blue she would go in to this horrible screaming tantrum hitting me in the face as I tried to pick her up off the floor before she tried to smash her head in to concrete. When it became apparent that I would no longer listen to others about my assumption it came to me on Valentines Day 2013 (Our Wedding Anniversary). Piper had been great for weeks no bad tantrums so I thought, how nice would it be to have a "mother daughter lunch" together. I felt bad because it was as if we had become prisoners of our own home scared to go anywhere with her alone because the tantrums were uncontrollable. I thought I'd give it one more try. We sat down for lunch and everything was going great, I even took photos sending it to Dan while he was out at sea for work. "Mother Daughter Date. YAY" I texted along with the photo. I came prepared too. I had a bag of her favorite foods, objects, and everything she loved. We ordered lunch and I was beaming from ear to ear finally being somewhere with my little girl. All the sudden, for no reason apparent to me... Piper loses it. I can't control her (she's SO strong for a 2 year old) She tries to start smashing her head and I grab her and pick her up and she immediately starts punching and smacking me in the face while screaming this "I'm Hurt" scream. I quickly try grabbing our items as everyone in the place is staring at me and whispering what a horrible mother I am and I should be discipling her. (For those that don't know: Its hard to discipline your child when it seems like they are in excruciating pain but you have no understanding why. Not only that, even if I were to say anything to her - she couldn't even comprehend it.) I rush Piper outside telling the clerk I'd be right back to pay and as soon as I got her in the car. We step outside and immediately Piper stops. I'm thinking to myself, what in the world? Did you just want fresh air? I turn back to the restaurant which is all glass windows and all these faces peering from inside just staring at us. I walk back in thinking its a "Terrible Two's Tantrum" and because we still had our food being made I ask the waitress to have it To Go instead. About 4 minutes and it happens again. This time, I pack up everything place Piper in her carseat and we leave. (I leave in tears - because I just wanted to spend a special day with my daughter and I feel like I'm the only mother in the world, at that time, that can't enjoy sharing fun dates with her little girl) It was after this trip, I knew my gut feeling was right. Something about Piper was different and from what I understood from reading - Autism seemed a lot closer to home than anyone else wanted to believe, even if she was "too young to tell". This is where our journey begins.
A cancer diagnosis and surgery in my late 20's left Dan and I with the news that the possibility for us to have children naturally, would be difficult. Lucky for us, when it was time for children, we got pregnant straight away. We even called to tell our parents and recorded their reactions because we knew this would be a very special and exciting time. (Their reaction here) Be sure to grab a tissue!
Piper was small the entire gestation and decided to come early at around 34 weeks weighing a whopping 3lbs 11oz. She had a very rough delivery and due to a doctors misjudgment (which we won't go in to) by the time Piper came in to the world she was battered and bruised. The blood vessels in both her eyes were busted and her face was black and blue. My husband and I always wondered if she would develop normally.
Piper was an incredibly easy baby, when she went to her own room at 6 months old it seemed that she loved her independence and alone time. I remember my husband and I laughing in the living room because we'd put her in bed and she would never cry, we thought how easy is this? Friends would come over for dinner and be amazed that we could just put her in bed and that was it. Not only did she not cry when we put her in her crib, she didn't cry in the mornings when she woke up. It seemed she slept straight through the night as soon as we moved her in to her own room. In fact, the only time she really cried was when she was sick or hungry. In the mornings we'd watch on our ip camera we had in her room as she quietly played and studied her surroundings, we would brag about how smart our little miracle baby was. So intense about everything surrounding her. I remember when I placed a night light in her room only to find she had covered her head with the blanket when I went to check on her. I got so nervous she would suffocate herself and couldn't figure out why she was always sleeping with a blanket wrapped around her head. (In NZ there is no central heat so blankets were placed in her crib in winter to keep her warm along with a small heater) As a trial, I removed the nightlight and sure enough - she stopped. Weird I thought... Normally children hate the dark. Not our little girl - she wanted it pitch black!
In lieu of toys, Piper never cared for special blankets, stuffed animals, dolls, or anything remotely girly. She preferred items she could hold her in hand like spoons, sticks, and her favorite for the longest time was a fake green bean from a pretend vegetable & fruit kit. Lucky for us, it never had to be the same item just something oblong that would fit nicely in her little hands. We knew the moment we found out we were pregnant our little girl wouldn't be like other children. She was a blessing and a special child that had been given to us as the greatest gift in the world. Her quirky nature and love for objects just made her even more unique and intriguing. Below is Piper's first week here - all 3lbs 11oz of her!