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.
Erika & Dan Harvey
A blog about our journey through the spectrum with our daughter Piper. Enjoy and feel free to share with others.