Oh, that concert. That Christmas concert. It has filled me with delight and dread and guilt and I haven't even attended it yet. Is this how all you parents of exceptional children have been feeling all along? Sick with worry that your child will stand out more than every other day? Have you felt sad that they might find discomfort and even pain in what is supposed to be a celebration of the season? How cruel a paradox is this concert? I know that some neurotypical children will pick their nose and cry instead of sing like angels. When our children act strangely they will draw attention, yes; but that attention is not what makes this concert hurt. The attention will be kind and positive for the most part. The audience will fall all over themselves to support this inclusive little gang because people, for the most part, are pretty cool. The problem is the feeling you get inside when you prepare your child for an event and you realize that you have lowered your expectations in fear and the guilt that comes along with that can be paralyzing. Seem dramatic? That's because it is. Do I love celebrating every milestone Kate reaches? Of course! Do I immediately compare/wonder/imagine other scenarios? Yes. Shamefully, I do. You don't? Tell me your secret. I don't want your kids. I don't want your version of family. I want mine. I just wish I could manage these thoughts. So, tonight I will take Kate to the concert that Alex had to convince me was a good idea. Oh, how difficult it is to practice what you preach. I know the whole room will support whatever way she is able to participate in this event. It is not their expectations that I am worried about. It is my own. I won't post this until I have an update for you. My precious Kate will steal the show, this I know. I hope I can get out of my way long enough to enjoy it for what it is. Her special night. *Update She rocked it. She owned it. My heart burst with pride and not once did I let those thoughts of what might have been cloud my brain. Kate is teaching me so much. I won't write another word because this video speaks for itself:
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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. I don't mean to do it. I get tired of hearing myself sometimes. I can effortlessly guide any conversation back to the topic of autism and I know it must drive you nuts. It's kind of like when you have your first baby. You can't help but talk about that baby because your life is consumed with all things baby. You go on a date with your spouse and you spend the evening talking about your baby. It's kind of like that. Alex and I have to make a concerted effort to NOT talk about autism when we socialize but we inevitably end up there at some point during the evening. I cannot tell you what a relief it can be when someone asks about it. It allows us that release and offers us a chance to explain a little bit about Kate. It is the constant over-explaining that I do that probably makes us less than popular at parties :). Let me give you an example: Friend: Are you guys going to take the girls to see the fireworks tonight? What I say: Fireworks! That could be a sensory nightmare. What kind of accommodations would we have to make to allow for that? I wonder if we could get her some headphones? Maybe she would love it? I would hate for Grace to have to miss out. How awful would it be to leave Kate home? Etc. What I should say: I'm not sure. We might see you there. (Our friends get it. They have read every word of this blog. They ask questions. They pay attention. They don't need my constant extended answers, but they often get them) Friend: Let's take the kids out to eat tonight. What I say: Kate only eats a small number of foods. She certainly won't eat anything off a restaurant menu. She may have a hard time looking at the food we order. Maybe I could bring her meal with us? I am not sure I can handle both of them alone in a busy restaurant. Can we do it when Alex is free, so he can help? Can we sit in a booth because it is very difficult to keep Kate seated if she sees an escape route. I may have to leave early. Etc. What I should say: Sure, I may need a little help, but let's do it. (Our friends already co-parent everywhere we go. So, if we have 6-8 kids with us at any given time the children know they any one of the adults is the authority and everyone helps out everyone else. Still, I tend to verbalize my fears. Friend: Do you guys want to go see a movie on the weekend? What I say: Maybe. We'll have to see if either of the grandparents are available to babysit because we can't exactly use a sitter. I am not sure there is a teenager in the neighborhood that would be ready for Kate. It would great if there was an agency that specialized in special needs sitters? Etc. What I should say: Sure, let me try and arrange a sitter. I guess I could go on and on about how we talk too much about the accommodations our family may need to make at times. I wish I could save it for this blog. After all the people that come here know what to expect. We often spend a good portion of our week managing therapies etc and you can read more about that here but for some reason we have a really hard time leaving it all behind when we socialize. I hope I don't drive you too crazy and I hope you understand that we are only a year in and we are still stumbling around trying to figure this all out. Before I get some comments reminding me how important talking about autism is, please know that I know this. I dedicate a lot of time to this blog to keep that conversation going. I just think that in our real life we need to find a happy medium. Thank goodness for patient friends. 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: |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |