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.
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Readers of this blog know, that although this blog bears her name, Kate is not the only focus of our journey. Just as important is big sister Grace, who is the captain of Team Kate. Grace, at five years old, already understands that Kate needs a little more help day to day and she relishes her role as captain. She prefers to stay out of the limelight, so to speak, and will 'grace' this blog only when I consult her. The same will be true for Kate when she can make that decision. I asked Grace if I could write about her first day of school and she was eager to tell her story, so here it is. Before I begin Grace's story I will back track a little and remind you that Grace has a lot of anxiety, in general. Starting school is bringing that out in her and the past few weeks have been challenging to say the least. Now, if you will, imagine the quintessential Kindergarten teacher, with her gentle voice, and patient demeanor; the kind of teacher that students and parents adore; like Miss Honey from Roald Dahl's Matilda. Yes, her. Well, Grace has TWO of her. She has two perfect Kindergarten teachers that cannot wait to teach her. She is a lucky girl and we are thrilled for her. The evening before Grace's first day of school we sent Kate to spend the night at her grandparent's house. This was a huge help in a couple of ways. Her grandmother could take her to her speech and occupational therapy appointments for us and we could focus all of our energy on Grace. We asked Grace where she would like to go for a special supper. She chose a Japanese restaurant (it could just as easily been McDonalds) and off we went to meet her aunt, uncle and cousin. She was especially thrilled with her dessert. After dinner we went home for a quiet night and tried to keep things as low key as possible. We read, "The Night Before Kindergarten" and poems from Jack Prelutsky's, "A Pizza the Size of the Sun" and sent her off to bed with constant reminders that she will be fine and school will be a lot of fun. She went to bed easily. Hmmmm? She crawled into bed with us sometime after 4am. She never does that. She was nervous or excited or more likely both. When morning finally came she wanted her dress on immediately. She ate pancakes and starting worrying about missing the bus. She wanted to go the bus stop as soon as possible. It was thirty minutes before her bus was due but she wanted to go. I stalled her for a little longer and then eventually gave in and took her over. She didn't say much as she waited with her friends for the bus. Her cousin came down to ride the bus with her. I am sure this is the reason she got on the bus without tears. He is a big Grade 5 boy and he made her feel safe. Once she was off on the bus, we, along with the other parents, raced the bus to school so we could meet her getting off of the bus. When she got off the bus she immediately told me that she would not be going back on the bus unless I was driving it. Pretty unlikely since my husband won't let me drive his work truck because he doesn't 'trust me with it', yet. We walked to her classroom and she clung to me. She didn't speak but she didn't cry either. She held my hand and looked down. Her teachers gently guided her to her chair and she allowed me to walk away. I'm not going to lie, before I left I whispered in her ear: "Grace, if you do this I will buy you the biggest stuffed animal I can find today." What? It worked. She did it. She went to school all day long and I don't thinks she shed a single tear.
She told me she loves her teachers, she loves her classroom AND she gets to play on the playground every single day. I could not be more relieved. She fell asleep within minutes of arriving home and I let her. She is one tired little girl. The day could not have gone better. I worried a lot for nothing. Those that know Grace will appreciate how brave she was today. We are so proud of her. Things do not change; we change. Henry David Thoreau. Grace has recently graduated preschool. We are so proud of her. If you follow our story then you know how painfully shy and full of anxiety she can be at times. The 'photo shoot' below tells a different story. She is growing up and she is moving on and we have some seriously mixed feelings about this. It is particularly difficult as Kate was also due to make a transition but we have decided with her daycare that because she is not potty-trained and she is behind her peers that she will stay with the little ones in the two year old room for a little while longer. I know this is the right thing to do. I know her daycare will move her as soon as she is ready. Grace has moved on to a different daycare because of her age. She will be starting school in the Fall and she needs to be with her peers. Part of me wanted her to stay in the daycare with Kate. I took comfort in knowing that she was there with Kate. She understands her sister. She can translate for her; and I don't just mean in terms of speech. She gets Kate. Kate needs her in a way I can't describe. Alex and I are usually very good at celebrating different milestones with Kate. We don't often compare her to other children. She is making excellent progress. We still can't help but wish her sister was there to help her along during the day. We know that it is very important for Grace to go on to school and be independent. There is more than enough responsibility on Grace's little shoulders. Kate will gain a little more independence too. I know Kate misses her sister even though she can't express it. Grace misses her too. They are so excited to see each other at the end of the day. Below is their daily car conversation when they see each other at the end of the day. It rings true. Grace: You ok, Kate? Kate: I ok, Gacey. “Some changes look negative on the surface but you will soon realize that space is being created in your life for something new to emerge.” ― Eckhart Tolle "You want rums Mama?" Kate's eyes stare at me in anticipation because even though it sounds like she is offering me much needed alcohol, she is actually asking if she can play the drums. Kate hasn't figured out pronouns yet so she often offers you the very thing she wants to do, which can get hairy when we are talking about two preschoolers. We are downstairs in our neighbour's basement. The rest of the crew are upstairs enjoying a bbq. Kate has led me down downstairs with the threat of a meltdown I didn't want to face today. She had been down before and she remembers there are instruments for the game rock band in the basement. She remembers the drums. Kate picks up the drumsticks and smashes them together with a "One, Two, Three, Four!" and begins to beat on the drums. Huh? What? Where did she get that? I listen a little more closely. Does she have rhythm? I can't be sure because I sure as hell don't have any. I listen again. Wait a minute…..I think she might. I look around for a witness. Damn everybody else is upstairs. Kate's attention span is pretty non-existent so I know this is it. I left my phone in the wagon. Shit. Fast forward to her first day of music lessons the following week. Kate flitters from instrument to instrument in total Kate style. She never focuses long enough for someone to distinguish whether she gets the idea of the instrument or not. I, of course, urge her to the piano. She, of course, wants the guitar. I have my camera ready because as much as I sometimes criricize the media's obsession with all the feel good stories about the fewer than 1% with savant capabilities, I suspect Kate has some hidden musical talent that will blow us all away. As I watched her struggle to focus on her teacher's instructions and come back constantly for the squeezes she needed to get through her session, I realized that Kate's super talent is the amount of self-regulation it took her to meet our expectations that day. Being in that strange room with a new person and being surrounded by so much of the unknown would present to Kate as a monumental task. She nailed it with only minor issues. That is totally enough for me. The lesson went 'well', relatively speaking. Her teacher sang to her and sweetly ignored Kate as she screamed, "Stop Singing!" We can't wait for next week. As you may have seen on FB, Kate is currently looking for a lead singer for her band, "The My Little Pony Project." Apply below. If you follow us on Facebook (and I hope you do) then you will have no doubt noticed that Grace surprised us all and sailed through Kindergarten Orientation Day. I didn't sleep the night previous because I have seen how her anxiety gets in her way sometimes. She struggles to particpate in activities and she spends more time worrying about her sister than any child should. I don't have to tell the regular readers of this blog how unbelievable proud we are of Grace on any given day. I do however, have to tell her that. So, I made her a little slideshow below. First though, I wanted to give you some history on our Grace. I find this, in many ways, harder to talk about than Kate's autism. Grace was born on April 12, 2008, three weeks early at a whopping 9.8lbs. When the nurse placed her in my arms she delicately announced to me that Grace had been born with extra fingers, a condition called polydactly. (This is NOT the hard part, in fact we loved those little fingers.) I was shocked and confused but I still had this amazing baby in my arms. It would be fine. At least I had the luxury of her condition being described to me by a nurse in those first few moments. Alex was left to figure out for himself what was going on. It kind of makes me giggle when I imagine how many times he must have counted and re-counted her fingers in those first few minutes of looking at her. Funnier still was days later when my friend K was holding her and the little protective mitt slipped off (we hid her condition at first). K thought she had broken Grace's finger as her extra digits had no bones and hung from her hand at an awkward angle. K even laughs at this now. For the very curious of you I have posted a couple of photos. Grace had those little fingers removed with surgery at ten months old. They couldn't simply be tied off because there were nerves in them. They had to be removed surgically and the nerves were tied off back inside her hands. She has tiny scars. We had her hands cast before the surgery so we could show her when she was older. I will admit I was originally very upset at this turn of events, especially when her discharge papers from the hospital called her disfigured but I have since learned that it was merely a cosmetic thing and who cares about the cosmetic things. Her surgeon told us she could have been the fastest piano player in the west if we had of decided to keep them. :) The next thing we went through happened just before Kate was born. It is the hard part. I will say this quick. Grace has had many bouts with pneumonia due to her asthma and during one of these x-rays the doctor saw Grace's heart was enlarged. I googled it. Then I cried. Don't google it. Google doesn't provide accurate information. They also found a heart murmur. We set up an echo which was done days after Kate was born (in fact it was done the same day Kate received a positive test for hypothroidism (which later turned out to be a false postiive). Anyway, thankfully the echo showed no major issues and we monitor Grace through the help of her paediatrician. She tires much more quickly than most kids her age and her asthma often slows her down but otherwise she is a typical kid. I still worry. I constantly worry. Do we ever get to stop worrying? I told you I don't like to talk about this. For Grace: I know there may come a time when our girls fight like cats and dogs. For now though, they are very close. There have been some minor "sharing" issues but otherwise they prefer to be with each other over anyone else. Grace will often verbalize guilt over going places without Kate as I have spoken about before. Kate, however, does not have the words so she reacts like in the video below. Please don't think I am mean for posting this video of Kate crying because if you really listen you can tell she is 'turning it on' a little. Kate is frustrated because she doesn't know where Grace is going (a visit to her grandparents for some Gracie time) and we can't yet explain it to her. I feel terrible for her but rest assured she quickly settled when her dad came home until bedtime when she repeatedly asked for Grace again. Eventually she fell asleep with Grace's pony and she was happy. I sometimes wonder if Grace has more patience for her sister because she knows Kate has difficulty navigating her day. I wonder if maybe there is no room for rivalry in a relationship like this? Grace has been fiercly protective of her sister at times but that is not what I am talking about as I have seen this in neurotypical siblings too. I guess I am just wondering if others have found little rivalry between their NT child and their child with ASD. You've seen how Grace treats her sister in videos I have posted here and here. I would love to hear from other parents in the same situation. If you look at our kitchen calendar you'll see a questionably OCD version of our daily schedule. Brightly coloured sharpies are used to detail our coming weeks so we don't mix up our many appointments. Of course, we still sometimes do. In any case, looking at the calendar reminds me of something that bothers me everyday. It is completely dominated by Kate's therapies, doctor's appointments, special needs swimming lessons etc. The only place you see Grace's name on our calendar this month says: Grace: Dentist 11:00am. Ugh, poor kid. It kind of makes my stomach drop at how little of our 'extra' time is dedicated to activities for Grace. It isn't because we don't try to get Grace involved in activities like gymnastics and swimming; it is because she is painfully shy. We know that she is reacting to some of Kate's behaviours and the massive amounts of attention placed on Kate right now as I have written about here and here, so we are feeling especially guilty about her anxiety level. She has been signed up for everything going and she usually spends the time hugging my leg and refusing to participate. We haven't given up on signing up Grace up for things and working on that shyness but we have decided to give her a few months off from the pressure of having to participate in these classes. We know it is important for Grace to work through her anxiety but if anyone deserves a break, it is that kid. So, for now, she attends all of Kate's therapy sessions and doctors appointments with us. She loves to be 'team captain' and she adores Kate like no other. We know that Grace is Kate's biggest ally throughout all of this. So, I guess I just wanted to send a shout out to all the siblings of special needs children. If I have any advice for parents in this situation it is this: 1. These little people have to wrap their brains around issues that adults struggle with. Be honest and forthright as soon as they are old enough to understand. That time will vary and you and only you can make that decision. This is one the books, websites, and medical journals cannot answer. 2. Allow them to be as involved as they want to be. Grace, enjoys attending Kate's sessions (probably because they are play-based) but at some point I fully expect her to ask for a break and she will be welcome to it. 3. Make sure you dedicate special times where the focus is entirely on them. I am taking Grace away for a long weekend soon and it will be a much-deserved Gracie-centered weekend. 4. Allow them to complain about their sibling. In some sense, they may feel ripped off (back off haters, a four year old child does not have to see autism as a gift) and they may need to express how bad it feels. Some children may not want to say it to mom or dad because they can sense you have enough on your plate so please give them a cool 'aunt' or a grandma that they can complain too. Have any advice to share? I was playing around with some pictures of the girls today and I decided to pair them up so they could see what they looked like when they were the same age. I threw in some videos and was quite proud of my little digital scrapbook until it dawned on me that people might look at this as a normal vs. autistic child kind of thing. Then I thought, screw it, I can't control what people think. Here are some awesome pictures of my girls right around the same age. Hopefully, you'll enjoy them for what they are and nothing else. I also added in a few pictures of the girls together to show how they have grown together. The "tap dancing" videos at the end are very recent. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |