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
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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: 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. I have written before about my frustration with the marginalization of parents in the autism arena. There is judgement abound among the public and even within the community itself. The way I see it we are placed, by our own hand and others, into one of a few, superficial categories. Having said that, I sincerely hope, that by detailing them here I do not further perpetuate the stereotypes but instead draw attention to the fallacies that exisit. Firstly, The Warrior Parent, who is kicking ass and taking names. Don't get in their way because they will plow through you. I have been guilty of taking pride in falling into this category on occasion but I have come to realize that it is a dangerous place to sit. Credibility is difficult to hold onto when we are seen as a tunnel-visioned, battle-ready soldier ready to demolish the injustices in the autism world. The people that fall into this category are often articulate, strong, well-read and researched and they see little value in wasting time with things that don't directly involve improving autism services for their child and others. The very terms we use to praise these parents can pigeon-hole them into a category that often can intimidate policy-makers and worst case, deter our efforts. If you consider yourself a "warrior parent", please understand I am, in no way, suggesting you tone it down. In fact, I am going to kill it for Kate and I don't plan on making any apologies. I am asking that we re-think how we view the parents that scream it from the roof tops because if it wasn't for them we would have very little reform at all. Their strength and resolve should not be reduced to a caricature of what they really are. The next category is The Emotional-Wreck Parent, I also fall into this category on occasion. I am sure every parent does. I have been know to break down at odd times and may appear less than stable to the lucky diners next to us in the restaurant. These parents appear to be struggling with coping and holding it together. It would seem that all their thoughts and ideas are wrought with raw emotion and a desperateness that, like in the case of the "warrior parent", can turn people off and avert our cause. Wrong! These parents, the ones that get emotional, which again encompasses most of us, are as eloquent and expressive as any with their concerns and desires. They take a more authentic route and allow their feelings to show and can do more good sharing their heartfelt experiences than any autism scholar out there. The objectives for these parents are no different than any other. It is unfair to diminish their feelings as 'emotional' and therefore less than valid or legitimate. These parents see clearly with the help of their emotions, not in spite of them. The final category, and I know there could be many more and sub-categories too, is The Private Parent. They could be seen as removing themselves from the game because they choose to quietly take their family on the autism journey. These parents are our secret weapon. They are no less passionate about their children and they are educated and aware. They do not have to write a blog, or publicly battle policies they don't agree with but rest assured they are quietly and skillfully advocating for their child and that makes a difference for all of us. They will watch and read and intellectualize everything before making choices and when they do speak out it is powerful and game-changing. I know many of our readers fall into this category because we have so many visitors that never comment. I respect this. I get it. Obviously, I know that autism parents are far more diverse and intricate in their thoughts, feelings and actions than these three categories would allow. What do you think? Do you fit into any or all of these categories. Are there categories I have missed? Please share. I love hearing from you. 5. Hug Every Single Person You See: Kate, appropriate or not, loves to give hugs to people. She will crawl into the lap of a stranger if you let her. But, you know what? They always smile. They always instantly feel happier once receiving a Kate hug. So, lesson five boils down to: hug people and make them smile. (feels funny typing this out because I am definitly not a 'hugger'. Unless it is my girls, of course. So, please don't hug me) ;) 4. Don't Judge: Kate likes every single person she meets. She does not care what you are wearing or what you do. She does not care if you have money or not. She does not care if you have a disability or if you've made mistakes. She is happy to be in your company. She routinely greets strangers with a big "Hi" as we walk around town. She is an equal opportunity lover of people. Lesson four: You should be too. 3. Be Sincere: Kate never lies. She never pretends to be something she is not. One of the myths of autism is that they cannot tell a lie and I do not want to perpetuate that myth with this lesson but at the moment she is as authentic as they come. For example, you can say: "Kate, did you put your banana between the couch cushions?" and you will get a "Yes, Mama." and a huge smile. You will always know where you stand with Kate. Lesson three: Be genuine to yourself and others. 2. Give it Your All: Kate doesn't hold back. No matter the situation she gives all of her energy and effort to what she is doing. To Kate, there is nothing she cannot do. She can tackle the gymnastic equipment without trepidation. She can (try to) jump off the boat and go for a swim (while it is moving!) She is fearless (which can be stressful for us, but a quality we understand to be freeing). Lesson two: Don't be afraid to go all out, whatever the task. 1. Live in the Moment: Kate does not regret yesterday or worry about tomorrow. She lives for today. She does not hold a grudge or dwell on the past. She does not fret about what will happen in the future. She is present in the moment. She does not live in her 'head' like some of us can get caught up doing. Lesson one: enjoy the moment you are in. Be present and be mindful. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |