I figure if you can't beat 'em, join 'em. The internet has been telling me for two years that something I did during pregnancy caused Kate's autism so, at long last, I concur. Here are some of the ways I most likely caused autism. The Blue Slushie Conumdrum I was seven weeks pregnant and I got this wicked craving for a blue slushie. I drove to the gas station and poured the biggest one I could and gulped it down outside of the gas station like a lunatic. In the brief moment after I was done and just before the brain freeze set in, I thought to myself: 'I shouldn't have done this. This can't be good for the baby. This will probably give this baby autism. It's even the colour of autism awareness for Christ's sake.' But, then the moment passed and my brain froze and as I staggered back to my car like a mid-day drunk I forgot all about my earlier realization. The Glow Stick Incident Just weeks later, at 3 months pregnant, I was busily cleaning the playroom when I realized I didn't have enough hands to carry all that I needed to carry from one corner of the room to the other (you know, 'cause that's how I clean, sometimes) and I used my mouth to carry a handful of glow-sticks that were destined for the garbage. Well, didn't one of those little fuckers break right inside my mouth and while it only took a millisecond to taste the grody green goo and spit it out; I realize now that that could have been the moment when I caused autism for my daughter and maybe a number of other children I came into contact with that day, too. The Attitude Adjustment Once, just after my sixth month of pregnancy and consequently my sixth month of throwing up multiple times daily; I screamed as loud as I could that everybody on the internet LIED and pregnancy SUCKED and then I cried and cried and when I was done screaming and crying and I finally opened my classroom door and my students warily walked to their seats, I realized I might need an attitude adjustment. And if you listen to what people on the internet tell you, a bad attitude can most certainly cause autism. So, there's that. I'll keep searching my brain for memories of shameful moments during my pregnancy to share with you. You know, just to make sure we have all the facts determining how I caused Kate's autism. Check back for part two soon and if you're into teasers it has to do with a slightly undercooked pizza crust and the very liberal use of bath bombs.
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Have you cried yet today? Grace received this letter just days ago. Be ready, it punches you right in the feels. Amy, a volunteer with National Service Dogs, has been following our story, and she's taken a special interest in little Grace. She understands Grace, you see; in a way, even I can't. Amy has a brother with autism, and while she's all grown up now, she can completely relate to our Grace. So, please, read this letter with a box of tissues close and thank Miss Amy for thinking about a little girl who often happily takes a backseat to issues surrounding her sister. Dear Grace, My name is Amy, and I have a sibling with autism too. His name is Thomas, and he’s only one year younger than me. I’m a little bit older than you, but I wanted to write you a letter to tell you that I understand what it can be like to have a brother or sister with autism. Not everyone can say that. That makes me special, and it makes you special too. I’m sure you’ve heard many times that your sister has special needs, and that she can’t help it when she cries, or hits, or yells. And they’re right, but that doesn’t make it any easier for you, does it? Well, sometimes you understand what everyone tells you. But other times it really sucks to hear those things. I remember wishing that Thomas could just stop being autistic. Sometimes I just wanted to put on some earmuffs and pretend to be in my own world where Thomas didn’t get to join me. Sometimes, I even hated him. And then after I thought about those things, I felt really sad. And then I felt guilty. And then I felt really alone. A lot of times it seemed to be all about Thomas. I liked to please my parents a lot, so I would try not to complain too much. I was a very shy person, I didn’t really like to talk much. I kept a lot of things to myself. None of my friends understood Thomas, so I just didn’t feel like explaining him. And I think that’s ok, but I did feel lonely sometimes. Having a sibling with special needs can be really, really hard. I just wanted to tell you that it’s ok to be mad, and scared, and angry. It’s ok, and very normal, to feel those things. You know what else? Having a sibling with special needs can be really, really cool. You get to be the very best big sister in the whole world. I bet you’ve heard that before, yes? I know I have. It makes you a very special person because you will, now and forever, understand all types of special people. I bet you’re patient, and I bet you’ve never teased anyone (what’s up with those bullies, anyway?). You understand what it means to be kind, and that is (in my opinion) the most important thing in this whole world. And you already have that. Some adults don’t even have that! For a very long time I felt like I needed to be perfect. It was hard for Thomas to do well in school, so I felt like I needed to do well for both of us. I used to get pretty upset about low marks or anything negative on my report card. Do you ever feel that way? Don’t get too caught up in it Grace. It’s very important to work and try hard in school, of course, but you have to remember to have fun too! You can have your own friends, and you can have time away from your sister. You can find something to love that is all your own. For me, those things were piano, swimming, and a very dear pet. What do you love that is all your own? Gracie Nights? Your beautiful cat? Do you like to play dress up or dance? I know you love Kate, just as I love Thomas. But sometimes we all need breaks, and we all need things that we can hold next to our own hearts and call them our very own. I am very proud of Thomas. A lot of things that used to bug me when I was little have gone away. He grew older, just like me. He is hilarious, odd, and special and wonderful. He is just the best brother in the world, and I wouldn’t want a life without him in it. And even though we had some very tough times, we are now very good friends. Kate will grow, just as you will grow. Some days will be hard, and most days will be awesome. This letter was a bit longer than I thought it would be but I guess, despite the fact that I’m shy, I had a lot to say! I know it can be hard to see sometimes, but you’re a very lucky girl. You are not alone. Amy She never looks back. Why doesn't she look back? Kate is what we call, in the autism community: a runner. She sometimes takes off at full speed toward an item of interest, or simply freedom, and sometimes she quietly slips away unnoticed. Both forms of elopement are extremely dangerous because she never looks back. She is not afraid of what might be around the corner. She has a pathological trust of everyone and everything and it scares the hell out of us. This is the main reason we have an autism service dog. Not every child who slips out of sight is at risk. Please be careful not to throw these terms around without understanding the severity of their meaning for some people. I've been teaching and parenting long enough to know the difference between a Wanderer/Runner and what I'll call an Explorer. Children with autism very often exhibit traits of wandering, running or eloping from safety. Children with autism are often drawn to water during elopement and there are a staggering number of deaths due to drowning on record. In fact, drowning is a leading cause of death among children and adults with autism. This issue has reached the level of crisis as not a week goes by that we don't hear of another child losing their life due to wandering. Please understand that wandering is a very serious and dangerous behaviour often found in people with autism and Alzheimers. As an educator I have had a number of parents, over the years, caution me that their child is a runner and needs further support during the school day. I have only found this to be true a handful of times. Let me distinguish the difference, as I see it, for you here: You Might Have an Explorer If: Your child finds more interesting things to do while you shop like pop in and out of aisles ensuring you lose sight long enough to feel your heart in your chest for a moment. Your child can be found exploring the flowers at the edge of the soccer field while the rest of the children are engaged in the game. You often find yourself threatening to leave without your child during an outing, only to have them come running as you pretend to walk out the door. You often find yourself saying things like: "That little rascal never slows down" and "Every time I turn around he's into something else." And most importantly; when an Explorer takes off they will look back to see if they are being chased. You Might Have a Wanderer/Runner if: Your child does not response to his/her name being called. Your child exhibits no fear in the face of danger. Your child exhibits no fear in the face of strangers. Your child can easily slip away unnoticed even with direct supervision. Your child never looks back. If you have a Wanderer or a Runner there is information out there that you can share with all those people that will have your child in their care. It is paramount that they understand how serious this issue is for our community. Working to Prevent Wandering Scholarly Article on Wandering Popular Media on Wandering The Prevention of Wandering Hello Shanell,
My name is Adriana and I am an NSD volunteer. I have been following your blog and facebook page since I read your "Dear Autism Service Dog" letter in the NSD newsletter. I wanted to share with you how much I love your writing and the fact that you share Kate and Oakley's journey with us. It gives us a unique perspective into your journey and reminds us every day why we volunteer. It serves as food for our souls and reminds us why we open our hearts and our home to these beautiful creatures. We had the pleasure of welcoming Oakley Long Legs into our home for 2 weekends this past summer. We were not able to volunteer as much as we normally do with the past group of dogs. My Mom was diagnosed with lung and bone cancer in late April and unfortunately lost her battle on September 6th. I miss her terribly but knowing that she loved animals and always supported me in my NSD work, I walked the fine line of balance and did what I could do to stay involved. My husband and I have 2 beautiful boys - Evan is 7 and Alex just turned 6. We have been volunteering with NSD for 2 1/2 years. When we lost our beloved Golden retriever, Maddy, at age 8 very suddenly, our family was devastated. We got her at 8 weeks old and she was our first baby long before we made the leap to have human babies. When she passed, I was desperate to have a connection with a four legged fuzzy being and reached out to NSD. I started out doing the evening enrichment at the kennel and slowly eased into weekend sitting and then the school bus program (dogs who are near the end of advanced training who are experiencing kennel stress go home with families every night as well as weekends). Evan and Alex also love to participate in hook up training as graduation draws nearer for each group of dogs. What started out as a means to fulfill my doggie fix has turned into an incredible family and personal experience rich with life lessons. At my first graduation ceremony in 2012 upon hearing one of the parents speak, I cried uncontrollably as he described how his dog would allow them to make a trip to Walmart which up until then had been a very difficult undertaking. I thought of my own experience taking 2 lovely boys to Walmart on many occasions (and recalled how they were not so lovely at times) and realized how blessed I was to be able to make that trip without added stressors. At this past graduation, one of the parents read the essay "Welcome to Holland" which I had never heard before. Again, I found myself crying uncontrollably imagining what the journey would be like for parents in the room and feeling the pain of their struggles. Then, your husband, Alex, delivered the incredible speech you had prepared for the occasion and I sobbed. I loved the way you allowed us to see and feel the experience from the dog's point of view! I was able to chat with Alex briefly as my boys gave Oakley one last pet and kiss that night. He asked me if we had ever considered puppy raising and that is the final frontier for us. I'm not sure we're ready to travel that path or if we ever will be ready to form that bond with a dog. So for now, we wait for the next group of dogs to arrive and look forward to more weekends with those furry, funny and healing souls. I am crying as I type this just feeling so joyful that Oakley is bringing you and your family peace, grace and love. I continue to be amazed at the gifts these dogs have and the power they have to change lives. My family is honoured to be a part of that journey. We look forward to hearing more about your life with Oakley. I just showed Evan and Alex the photo of Oakley in his plaid shirt this morning. We love it! We love hearing updates on how the dogs are doing and how they are enriching lives. It keeps us motivated and focused on what we can do to get more dogs paired with more kids and people who desperately need them. Thank you for your time and for your insights into autism and for sharing your life with us. We are so grateful to be able to help families like yours. Wishing you all the best! Adriana, Andy, Evan and Alex |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |