So, let me get this straight. If you cannot see it, it must not be there? So, because Kate looks like a blonde angel, eating an apple and watching Princess Sophia she cannot possibly have autism? She cannot be developmentally delayed because you hear her speak and aren't children with autism non-verbal? Don't they scream and hit and flap and jump and spin and otherwise make themselves known so we can rush to their sides and immediately start with behavior modification strategies that will extinguish such unnatural behaviors? Why do you scrunch up your face when I tell you she has autism? Why do you look at her and say; "Really? I don't see it. She seems normal to me?" Is that supposed to be a compliment? Should I breathe a sigh of relief and call my husband up with the good news? "Guess what, honey? Joan says Kate doesn't look like she has autism. We are in the clear!" What are you looking for when you look at her face? Must you see something to believe in it? What about gravity? Newton gets a pass but Kate has to prove it? I see the autism in Kate every single day. Some of you do too, when you are privy to those physical manifestations that she'll treat you to at the grocery store or at the pool. The inappropriate hugging (I know you love it, though), the babble, the verbal stimming, the jumping, the flapping and yes, even the screaming and biting. There are many other ways autism manifests in Kate. Some are amazing and some have us reaching for a box of wine. Either way, Kate has autism. She will always have autism. You may not see it on days when she negotiated her way through her tasks like a champ. You may not see it when her father and I expertly redirect her before it comes bubbling up and overwhelms her little body. You may never see it because you don't want to. You may see some of Kate's behaviors in your own children and it may send you into a state of denial that keeps you forever defending her right to be neurotypical. I love that place of denial. I know it well. Yes, there is such a thing as being on the 'quirky side of normal.' It is even hip to be there, these days. This is not the case for Kate. She has a neurodevelopmental brain disorder. Accept it. We have. She is still perfect in every conceivable way.
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I could relay a number of instances when Kate has been teased or bullied by other children. I won't, though. It would be too painful for you to read. You won't like it anymore than I did. The children are not to blame, of course. They instinctively question her differences. They can't help but laugh when she does something strange. The most disturbing part, for me, is when I see Kate laugh with them. Kate doesn't understand that the children are laughing at her odd repetitive movements or her 'baby-talk' or her diaper or her chewy toys. She often thinks she is in on the joke and she laughs longest and loudest. It breaks my heart. It makes the children laugh harder and I get glimpses of her future at school. I guess you could say that Kate is moderately autistic, mid-functioning, swimming in the middle of the pool or whatever other silly metaphors are used to make her developmental delays clearer for her team. She is not severe enough to garner the sympathy of her peers and not high-functioning enough to 'pass', either. She sits somewhere in the middle and she is a prime target for bullying. This is terrifying for us. Alex talks about how we can work with Grace and the core group of children that Kate will go to school with and train them, so to speak, to protect Kate. I cringe at the thought of Grace feeling all of the pressure to stand up for Kate in the school yard. But, together, I think Kate could have a righteous little team behind her. I think about this little team, that we are slowly preparing for her, when I feel afraid for her to walk through the doors of that school. When I titled this blog GoTeamKate, I was originally referencing the many adults that would work together to help Kate negotiate her world. I didn't expect that a team of little children might be the most integral part of all. I will spare you another post about how hard holidays are for children with autism. If you're reading this, you know. Or you care to know. Instead I will tell you about a way we are planning to make things run a little smoother this year. GoTeamKate is going to sponsor a Sensory-Santa event. Firstly, you don't have to have autism to be afraid to sit on Santa's lap. Neither of my children take part in this tradition and I'm betting many of your children struggle, too. It is a bit unnatural, isn't it? Waiting in a long line with other anxious children and tired parents to sit on Santa's lap. For some, the line waiting is hard (nearly impossible for Kate), for some the sitting on a stranger's knee is hard (not gonna happen for Grace) and for some, the mall at Christmas time is simply too overwhelming to begin with. GoTeamKate is going to offer an alternative this year. We have reached out to Santa Claus, himself, and he is willing to come to the RKYC on November 30th from 2-4pm and spend some quality sensory-friendly time with children who, otherwise, would not get a chance to meet with him. If your child(ren) has sensory issues as a result of autism or any number of other reasons, then you are a candidate to attend our event. The event will, of course, be FREE of charge (**with the help of your donations). Parents may or may not order photos from the volunteer photographer at this event. (*See details below). Families (yes, the siblings of your sensory-sensitive kids are welcome, too!) can come and visit with Santa for a few hours. This event will be as sensory sensitive as possible. To book a spot or ask questions please email me here shanell.mouland@gmail.com. Obviously, there will be limited space available so please book early and make sure you are free to attend at that time. Santa will be there to allow children as much or as little interaction as they feel comfortable with. Some children may just enjoy watching Santa from a distance and that is fine with us. There will be activity stations set up to keep children entertained and some sweet treats to keep them happy. Please stay tuned for more details. *GoTeamKate is looking for an amateur photographer to lend their skills at this event. Duties would include volunteering your time and equipment to take pictures of the children interacting (or not) with Santa. Parents could then request pictures directly from you (for a price determined by you and GoTeamKate) which would be delivered at a later date. *Update: We have a photographer! We are very excited that Sarah Steinhauer has offered her services. Check out her work here: www.wix.com/sastein41/runestonemedia. **If you wish to donate to this event please use the donate button to the top right. (Unless you are reading this on your phone because then the donate button is below). Thanks! Each day when I pick Kate up from daycare, I ask her, "What did you do today, Kate?" and she always smiles and gives me a string of babble. She has lots of words but she cannot answer a question, yet. She can't tell me how her day went. She is great at requesting things. "Mama, I want turtles, wet's do dis." or "Mama, I go outside, wet's do dis" and some of the sentences are so long and detailed that Alex and I can't believe it came out of her mouth, eg. "Mama, I pwease tell you I want hug now pwease, wet's do dis." Anything else she says is usually jibber jabber or unreliable. So, I rely heavily on those that work with her each day. They are great at patiently telling me the details of her day. Yesterday, when I picked up Kate and asked her the same question, she said, "No hitting, Kate." I was pleased because in a way I think she was telling me how her day went. Of course, I don't want her hitting the kids in her class but at least she was trying to share something with me. I'll take what I can get. If you work with children with communication difficulties,and that includes the vast majority of kids with autism, regardless of where they land on the spectrum, then please be cognizant of how removed their parents feel from their day. Remember, even children with large vocabularies can be unreliable with communication. Please share all of the good and some of the bad and even some of the mundane. It means a lot. If you love someone with autism you must buy this book. In my opinion, to date, there is nothing more authentic, credible and enlightening than this story. "The Reason I Jump" is written by a thirteen year old Japanese boy. To be honest, I avoided this title for awhile. I was tired of reading inspiring stories of autism genius. This is not one more book to tell you that there is potential genius locked inside your child. This is real. This is beautiful. I've been craving this. The genuine narrative of a thirteen year old non-verbal boy answers so many of your questions and offers insight I haven't found anywhere else. I hope this becomes required reading for all those that work with our children. Buy it, share it, talk about it. Thank you Naoki! Long before Kate was diagnosed I was invested in autism and other exceptionalities because I am a teacher. I was not an advocate, or even well enough informed to do my job property, but I was interested and compassionate and ready to learn. And then, this prick said his piece and I cringed and moved on because it really didn't threaten my world. Oh, how wrong I was. If you think he is alone in his ignorance, you'd be wrong. I didn't post this because I want Michael Savage's dangerous message to spread anymore than it already has. I posted this as a warning. Just because people do not say it as loudly and confidently as this loser, does not mean they do not perpetuate this idea every time they question your parenting or your child's diagnosis or your choices. In some ways, Savage has done us a favour, and shown his true colours. He is like the racist that is vocal about his archaic beliefs. We can spot the crazy easily and make efforts to avoid it and protect our children from it. The more dangerous person, is the one that silently agrees with Savage's rant; the one, that knows his minority opinion would not be welcome, so he stays mostly silent and instead preserves Savage's mantra quietly. Below, I have left Savage and his supporters directions to where I think they might be most welcome.
It is the mark of an educated mind to be able to entertain a thought without accepting it. ~Aristotle~ I appreciate that your employer offered a professional learning opportunity that allowed you to spend some time learning about autism spectrum disorders. I am grateful that you took your learning seriously and you are interesting in learning more. I only wish to caution you this: The study of autism spectrum disorders is massive and ongoing. Current and progressive pedagogy is easily permeated by unfounded generalizations that sweep though the autism learning community and can cause serious repercussions for the families living with autism. Widely accepted myths about autism are spread through networks of professionals and paraprofessionals working in the field. This is dangerous and I would encourage you to be sure that your information/program is legitimate, peer and parent-reviewed and has the best interest of the individual in its design. This is not an easy task, I know. If you have chosen to work with individuals on the autism spectrum you have the responsibility to understand autism in its many forms and you must understand the basics, at least, of genuine and justifiable treatment options. I do not posit that living with a child on the spectrum or living with autism makes someone an expert on autism. I do maintain, however, that the parent is the expert on their child and their child's version of autism. Learning about autism is a ceaseless endeavor. You will not conquer this topic. I, for one, would love to see you try. I try. And while I try, I read and I read and I read the most relevant literature I can find. I spend hours speaking with other members of the autism community. I listen to the opinions of doctors and therapists and the people that love these children and I hold all of this information in my brain until it becomes too much and it spills out onto this blog, for better or for worse. Sometimes it makes me cringe when people look at Alex and I like we are doing something special. I don't mean the kind words that you leave on this blog because they are appreciated beyond imagination. I mean the times when someone looks shocked that we are functioning and functioning well. Let me explain. Kate is not hard to love. It is the easiest thing in the world. So, often it bothers me when people are surprised at how hard we work for her and our family or how we are generally not that stressed out. (I am definitely more stressed about the Red Sox post season looming, considering their collapse last year, oh and our new cat "Bill Bailey" is a righteous dink, so that is a bit stressful, too) Kate is a pleasure. She is not a burden. She is not a problem. She is as special to us as any child is to a parent. There are days when parenting is hard. I know that is true for all of us (except a handful of Pinterest moms who DO NOT EXIST). But, please understand that we have never and will never look at Kate as anything more than the most perfect little Kate in the world. And if we are being honest let's look at this situation with priorities in place. I have said it before and I will say it again: I said AUTISM not CANCER or DEBILITATING or FATAL. I said she flaps, jumps and spins when she is happy. I did not say she cannot walk. I said she does not like to look into people's eyes. I did not say she could not see. I said she is sensitive to sound. I did not say she could not hear. I said she struggles to talk. I did not say she struggles to breathe. I said she is not sure how to play. I did not say she is too sick to try. I said she attends multiple therapies every week. I did not say we could not afford her care. I said she might live with us forever. I did not say she had nowhere to go. Not long ago, a reader introduced me to Tiny Superheroes. Tiny Superheroes is a small business run by a mom who makes superhero capes for children facing extraordinary circumstances. Their tag line, "EMPOWERING EXTRAORDINARY KIDS – ONE CAPE AT A TIME!" says it all. Learn more about them here. This little business made me smile and I immediately donated $30 so that a child somewhere might receive one of these cool superhero capes. I also wrote a little note about my two little superheros and was surprised to receive a note letting me that Super Kate and Super Grace would soon be receiving capes of their own. The capes came in the mail today and, as you can see from the photos and the video below, our girls adore them. They are beautifully made and there was a special note attached for each girl. What struck me as they played with their capes, is that they really felt stronger, stood taller and smiled bigger with those capes on. You can see how serious Grace takes her new superhero status in the photo below. These little capes make a big difference. If you would like to sponsor a child you believe to be a Tiny Superhero please click here. If you had asked me what Kate's greatest sensory discomfort was, I would have said it was related to her hair. Until today, she did not let us brush her hair and a proper haircut was out of the question. Then something changed. First let me explain a little about why haircuts can be so hard for children with autism spectrum disorder. Firstly, our children, very often, have sensory processing issues. So, the simple stroke of a hairbrush can be very uncomfortable and even painful for a child who would be known as a sensory-defender. Secondly, our children are very literal. They may fully believe that getting their hair cut will hurt. Thirdly, children with autism often experience levels of anxiety that make a visit to the salon very difficult. And lastly, because communication is often impaired in children with autism it can be very difficult to explain the concept of getting a haircut even with social stories, signs and modelled behaviour. Unfortunately, a trip to the salon can result in a meltdown for some children on the spectrum. Trust me when I say a meltdown is not a tantrum. A meltdown is usually sparked by an overload of sensory input. Yes, you've felt sensory overload before, too, but the difference is, YOU can regulate yourself. Our children often cannot and will use stimming as a self-regulating tool until even that does not help. It cannot be solved by giving the child what they want, like a tantrum. It must run its course and we do our best to help keep our child and others safe during one of these episodes. Kate had a handful of haircuts before today. The first took place in a salon and we, along with the other patrons, were treated to a meltdown of biblical proportions. Our amazing hairdresser (our friend really, but for the sake of anonymity we'll call her 'the hairdresser') came to our house for each haircut since. We'd rather not end up like the family in this story: click here. The haircuts at home took place on our deck. I would hold Kate down with all my strength while her hairdresser cut her hair as quickly and as well as she could while Kate screamed and writhed in my arms. She would often scream so loud and for so long that we would pause and listen for sirens. I still wonder what our neighbours must think. I once thought it would be a good idea to show Kate the hair that had been cut and had fallen on the deck. I held up the blonde curls hoping it might make her feel better. Remember, when I said they were literal? Yeah, it didn't go well. She shuddered in fear. Things escalated. Oh well, live and learn. Today, it was time for Grace to get a haircut at the salon. I knew I could bring Kate with me because Kate lives very much in the moment. The salon would not scare her. She cannot predict what is about to happen and she would not have mistakenly thought we were there to get her hair cut. She sat with a Ninja Turtle in each hand and watched the little boy before Grace get his hair shaped into the perfect Back to School Mohawk. Next, Grace was called up. We stood to walk to the chair when we noticed Kate was slipping between us and crawling up to sit in the salon chair. Her hairdresser took full advantage of the opportunity and starting singing the theme song of the Ninja Tutles to Kate while she covered her in an apron and began cutting her hair (I told you she was awesome). Kate squeezed her turtles and watched in the mirror as she got her first real haircut, ever. I was stunned. The hairdresser was stunned. Grace was stunned. I waited for her to change her mind. I braced for the biting and the crying but they didn't come. She did it. She sat for a haircut like a champ. I am still smiling. Her sister was so proud of her that she asked me to take Kate's picture. She is kindly helping Kate look towards the camera in this photo. You'll understand if this is one of my favourite photos ever. Our team is taking another win today. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |