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.
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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: 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. I knew there was a potential snow day looming last night. As a teacher, I was cautiously optimistic and careful not to jinx it by thinking about it too much. Sure enough, the radio announced that the kids and I did not have to battle through 40 cms of snow today. For some that might mean sleeping in a little. For us, this is not the case. Alex was up at the crack of dawn to snow blow the driveway so he could get to work (no snow days for engineers) and I made the girls pancakes (I only burned most of them). I could have technically sent the girls to daycare as it did not close today but I like to take the opportunity to stay home with them whenever I can. Working mom of a special needs child guilt and all that crap. Today, in hindsight, the children might have been better off a daycare. Before 10 am Kate was gluing my good paintbrushes to the carpet and Grace had already received a swinging punch to her eye courtesy of her little sister. If you know Grace, you know she did not react because she does not like to rock the boat or upset her sister. We are trying to help her stand up to Kate but she is passive right now. She is such an awesome kid and we are working hard to help her stand up for herself. Anyway, It has been one of those days that usually follows a night like we had last night. On the weekend, Alex and I left the kids with Gramma and went away for the night. It was rest we both really needed but we knew that disrupting Kate's routine would probably lead to some issues. We actually leave our kids with either set of grandparents pretty regularly. We were careful to make sure that our kids would be comfortable staying with family from early on. Kate is quick to wave good-bye when we drop her off and is usually only upset when she is separated from her sister. Still though, it does take some adjustment for Kate to get back into her own routine. So, when we arrived home, Kate had a record meltdown when I tried to change her diaper and then, when it was bedtime, well just forget about it. It was rough, it was violent and it was heart-breaking. These nights are relatively rare but they knock us down when they happen. Kate tries so hard to communicate what she is feeling when she is mid-meltdown (see awesome description of a meltdown vs. a tantrum above, borrowed from Autism Daddy) and she gets so frustrated that all the phrases she knows come out all wrong and she spirals to a point where she cannot calm herself. She screams, 'be ight back, no, go, no, no, no, mama, seep no seep daddy, mama no, I take, I take, be ight back, is ok, is ok." And on and on. When the words do not get her message across she resorts to screaming. On this night, autism sucked. On this night, it was so clearly a disability and not a 'difference' to be celebrated that I was willing to take on the neurodiversity crowd with a vengeance. Once I broke the cardinal rule and cuddled with Kate until she calmed down and fell asleep, I headed for bed myself. After a restless sleep, we all got up and started our day. So, while I type this Kate is squishing her banana into the couch and I am seriously considering getting up and doing something about it. I should be using this time to work on Kate's therapy or help Grace work on one of her art projects. Instead, I put on "Hotel Transylvania" and took ten minutes to update the blog readers. I might even take a few minutes to have another coffee and then I am going to suck it up and get back to work/play. It might be exactly what I need. Lately, we have been trying to get Kate out more. She has every right to be out enjoying what our city has to offer. And Grace deserves to be out with her family doing normal family things. So, we went to lunch this weekend. We always choose a booth. Autism parents: can I get an Amen? If you have a child with autism or any toddler you'll know why a booth is a must. We are taking the win on this one because she was very well behaved, despite having her feet on the table. There was a point when she was stimming pretty strongly and running her hands up and down the blinds over and over. Alex looked at her and said: "Why don't you just wear a sign, Kate." I laughed so hard I spit out my drink. You have to understand it was said in total love. In fact, we do have t-shirts and we obviously don't mind the world knowing that Kate has autism but today she was really acting out the stereotype. It kind of makes us laugh because we try in some ways to dispel some of the myths of autism, like, that all children with autism are the same and then Kate behaves like a case study from an old text book. What are you going to do, but laugh? The photos below explain another reason we are calling today a win. The blissfully quiet, long drive home. I have not exactly been private about our experiences in the autism arena. For example, I write down every thought that crosses my mind in this blog. Even still, being in the newspaper seemed a little scarier to me. Even though I check our stats and I know this blog has tens of readers :), I was feeling very exposed while I waited for the article, we were interviewed for, to come out. I adored the reporter and that wasn't my worry but I was worried that people might see the article as a 'woe is us' type of story, where we complained about how difficult it was to raise a child with autism. This is certainly not the impression we wanted to make and I think the article does a good job of painting a fair portrait of a day in our life. We sat down with the reporter for over two hours in Alex's office. Looking back, we likely overwhelmed her with all that we had to say. It was almost as if it was bursting out of us. "Autism is NOT a mental illness. Autism does not equate violent behaviour. The sky is the limit for Kate and all children with autism. It is ludicrous that our province would posit that there is only one 'evidence-based research' approved therapy." And on and on and on. The reporter asked for 'a day in our life' and we found it almost impossible to talk about a day in our life without talking about all these emotionally charged and inherently political topics. She was kind and patient and she listened to us talk over one another trying to get the information out. It would be impossible for any one piece of writing to detail the highs and lows of this ride. I guess that is why I am keeping track here. Ultimately, I know that any attention drawn to the cause is good. We can't afford to have misinformation out there. We need to set the record straight. And, while it is true that even those of us raising children on the spectrum disagree on many issues (see Hey ABA, and She's Flappy When Happy) we would all agree that the world should know how amazing our children are. This issue is so personal to each family and it can be difficult to talk about. Every experience is unique. Every family is on a different path. Well-meaning people can sometimes say the wrong things. (I once brought up the Red Sox dismal post-season at a funeral because I didn't know what to say.) For example, recently, when I was in the hardware store picking out paint for Kate's therapy room the nice lady working was trying to sell me on purple. I explained to her that it was not for a little girl's bedroom but her therapy room and the colour was meant to be soothing because she has autism. Her reaction was pretty intense. She told me what a tragedy and a shame autism was. I had to ask her if she thought I had said cancer? Don't get me wrong, it isn't easy for any of us. Some struggle more than others but priorities please! If you get to tuck your babies in at night then you have not experienced tragedy. See Rockstar Ronan to get your priorities straight. I visit every single day. So, all in all, we are happy with our newspaper debut and we hope people see that Kate is not a set of behaviours to be dealt with but a real little girl with an amazing big sister and a family trying to pave the way for her. I guess my title worked. I got you this far. I am such a sucker for titles like: 5 Ways to Train Your Cat, or 10 Things Every Mother Should Know. I think the reason I click on them is because I am looking for that little piece of information that will make my life easier and I want it quickly and in point-form. It just goes to show you how busy we all are. We need our ground-breaking/life changing advice in under two minutes (less than thirty seconds if you can pull it off.) This must be why I am addicted to Twitter. You won't get life changing or ground-breaking advice from me, at least not on purpose. So, here you go, as promised; that list: 5 THINGS THAT BROKE MY HEART1. Receiving the diagnosis: Yes, I was gutted. We both were. I am not going to pretend that I walked out of there with a new found ambition to fight for the rights of kids with autism everywhere. I walked out of there in stunned silence. I walked out of there as if it was a total surprise when we all know it wasn't. See: the Diagnosis. It sucked and then I cried. 2. Learning that our province would only fund/support one form of treatment (ABA). A treatment that we don't entirely agree with. See: Hey ABA or Not the Lighter Side of Things. 3. Realizing that Grace was getting left behind in all of it and hearing her ask me why Kate still acts like a baby. See: A Letter for Grace. 4. Watching Alex fight so hard to organize Kate's treatment and reach roadblock after roadblock. See: The Brick Wall and Autism Treatment. 5. Waiting and wondering if Kate will ever make friends or be invited to a birthday party. This topic deserves its own post and it is coming but for now: parents out there; listen up. Invite every kid in the class for Christ's sake. How hard is that? And if you know someone who is not doing that, call them an asshole, to their face, with your fist. 5 THINGS THAT MENDED IT1. Kate's amazing therapists and doctors. There are people that get it. There are really progressive people out there that don't follow the status quo. See In Case I Wasn't Clear Before or A Visit to the OT.
2. Watching Grace take charge of Team Kate and help design the logo and take pride in being team Captain. Watching Grace so patiently love her little sister that it could make you weep. 3. Our amazing family. There is no way we could manage half of what we do without them. They take Kate to appointments and help with her diet. They are helping build her sensory room. They watch the girls so we can go to the movies or out with friends. They support us in every imaginable way. 4. Kate's progress and her amazing little personality. See: 5 Lessons on How to Live A Good Life From a Little Girl With Autism. 5. Every single one of you amazing Blog readers. I swear to God when I started this bog I hoped for around ten visitors. I figured, if Kate's therapists or doctors or close family members wanted to keep up to date on her progress they could check in here. We had a few more than ten visitors. We've had over 4000 hits in about 6 weeks. Thank you so much. Christmas day was great. It is obviously a tough season for kids with sensory issues but Kate handled it like a champ. Grace was as sweet and thoughtful as ever and worried more about delivering presents to others than opening them herself. She was even kind enough to tell you what was in the gift before you opened it :). Kate opened a few presents but was mostly finished with that business soon after we woke up. If you asked her to open a present she would say, "no presents, no pictures" so you can see she was done with me chasing her with the camera too. Kate adored her marble tower and her little Buzz and Woody bobble heads but nothing made her happier than her scissors. Kate received five pairs of kids scissors and she was thrilled. She has a thing for scissors (don't worry, we always supervise) and she spent the morning clutching them. She did try to cut the cat's fur but we managed to intervene. Otherwise, she happily cut the wrapping paper while her sister opened her gifts for her. I was worried she might want to take the scissors to bed but we managed to put them away and tuck her in with Buzz Lightyear instead. Grace's favourite present is a book I bought for her about Venice. She is fascinated by a place that has streets made of water and she wants to go there someday. The four of us will go when the girls are older for sure. I think her second favourite present is her new dress and tights from Zara Kids from Uncle Brendan. She is really putting the pressure on for me to let her wear it but I want to save it for a special occasion. That does seem silly though doesn't it? I should just let her wear it. How many chances will she get to wear it before she grows too big. This photo of Kate was taken later on in the day at her Grandparents house. Sometimes, Kate will pause and zone out for awhile. We have learned that this is the first warning that she is ready to go. Clearly, she was finished with Christmas. Soon after this photo was taken we packed them up and took the girls home to bed. All in all it was a very successful Christmas. We have learned a few things from our experiences this year. Most importantly, less is more. Kate was overwhelmed by the massive haul under the tree. She opened maybe three presents and then chose to spend some downtime with her Buzz Lightyear. Next year, we are going to make sure we tone it way down. In fact, there has been talk of spending Christmas somewhere tropical and skipping the excessive gift exchange altogther. Don't tell Gramma! Kate could have written much of this letter herself. mom-ology.ca/wordpress/autism-at-christmas-please-be-understanding |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |