Empathy
Tuesday, May 15th, 2012 | Things My Son Has Taught Me | 2 Comments
I got a phone call a couple weeks ago. It only took a few seconds for the caller to begin to cry. If I tell you something, will you promise not to tell anyone? Of course, I said. I think my daughter has autism, she sobbed. I could feel her pain through the phone, and I listened.
The interesting thing about this phone call, and what I couldn’t stop thinking about afterwards is that this is a woman with some experience with autism. She knows some other children with autism and she told me that she was so afraid of what this would mean. After all, she had seen her friends’ families and she said she saw the struggles that they went through. For the first time, she felt what those families must have felt when they first started to have doubts and fears. And it was terrifying her. She was empathizing with so many other mothers who have looked at their precious babies and wondered, what if?
This isn’t the first time this has happened to me. This is what awareness is all about. We fight for this and we fundraise for this – we want people to know the warning signs and watch for them. Fear is not the enemy, ignorance is. I told her what I would tell any mother: here’s what to look for, keep looking, and believe me if your worst nightmare comes true, it won’t be that bad.
We spoke for a long time and I told her that many of the things she is concerned about are possible delays, but not specific autism signs. I also told her that her daughter is too young to be diagnosed at this point. She knew that, but she didn’t want to fall behind. She didn’t want to lose any precious time getting her daughter the help she might need. She’s a good mother, I thought. Good enough to have a daughter with autism. Don’t panic, I said, but watch for the signs because they are likely to show up sometime between twelve and fifteen months if you’re really looking for them.
I told her, I know it is hard to believe, but autism can also be wonderful. You may think that you know the stories of those families, but there are things you don’t see. You don’t see the joys that can come with autism. Struggles, those are easy to witness, but the true blessings that come from having a child who sees the world differently, those have to be lived to be appreciated.
It was such an honour for me to receive that call. To be the one she would trust with her deepest fears. I was so grateful for her raw, candid emotions and for a glimpse into how much she must love her little girl. Mostly, though, I was grateful for her empathy. Whether or not her daughter is on the autism spectrum, she has gained priceless insight into the lives of other mothers whose children are. That experience won’t soon be forgotten. She felt the fear and worry and I got to relive those first moments through her. Ironically, her biggest fear is having to walk in my shoes, and my wish is that everyone could be so lucky.
Scary Cool
Wednesday, May 2nd, 2012 | Toddler Musings | No Comments
Parx: Taya! You gotta come outside and see this! It’s a spider! Actually, it’s not a spider. You gotta come.
Taya: Is is scary or cool?
Parx: Cool.
Taya (gets up to go outside): Ok.
Parx (seeing that she isn’t afraid): Actually, it’s scary.
Taya (sitting back down): So….not going out then?
Parx: Actually, it’s cool.
Taya: Can I see it from here?
Parx: Yeah, you can see it from in here, but it’s on the sand and it’s really small.
Taya: How many arms does it have?
Parx: It has three arms.
Taya (thinking): Well….ok, I guess. It better not be too scary.
Disneyland
Tuesday, April 17th, 2012 | Adventures with Autism | 3 Comments
This year we spent spring break in Arizona. We decided to take a few days to drive to California and take the kids to Disneyland. Now, to say we’re not Disneyland amateurs would be an understatement. We’ve been more than a few times, but this was a daunting trip. How would Tyus handle the crowds, the lineups and the uncertainty of the Magic Kingdom? We had been talking about it for a few years and finally it seemed like the time was right to give it a shot. So, with some faith, trust and a little bit of pixie dust, we were off.
We had heard that you could go to City Hall on Main Street and obtain a pass for your child with a disability, allowing your party to skip the queue. I was all for it. Head straight there, I figured. Let’s just see how it goes, Tim suggested. We got to the park the first day at about 7:30pm after the long drive from Arizona. The kids were tired and hungry. No point getting the pass that night since we were only going to go on a couple of rides and then head back to the hotel. We stepped through the turnstiles into Disneyland that first night and Tyus handled it very well. I cursed myself for coming up with this plan. Why would we (who had been often enough to know better), choose a busy time of year to test this experience with our autistic son? Why not come in the off season and avoid the crowds? Meanwhile, as I admonished myself and wondered if I had ruined the experience for Tyus forever, he walked along taking it all in. He loved the lights and the music. He walked slowly and held his hands over his ears, but he was enjoying the new sights. We decided to go on the Dumbo ride first, and as we approached the front of the line everything shut down for the nightly fireworks show. Caught between the foreground and the background of the explosions, the sky all around us lit up for nearly twenty minutes. And they loved it – all of our kids. At one point Taya said that it was “her dream come true” to see Tinkerbell really fly.
Tyus loved the Dumbo ride that followed and the one after that and the one after that. In fact, over the course of the next two days, I can’t think of one thing that he didn’t like. He loved the shows and the sounds and the special little spots that you discover as you wander around. He loved all the intricacies of the decorations in It’s a Small World and the dark boat ride to Neverland. He enjoyed riding the Disneyland Railroad around the park and watching the popcorn come out of the kettles at the vending stands. He especially enjoyed meeting Handy Manny and marvelling at his fake face.
It was our first family vacation to Disneyland and we had so much fun. Every single one of us. We laughed a lot and smiled so much that our cheeks were sore. We got autographs and ate cotton candy and posed for photos. It’s a rite of passage, I think; every kid should get to go to Disneyland. I was worried that Tyus wouldn’t like it. I’m not sure if I was worried more for him or for me. It’s something I love so much and I wanted to share it with him. I am so happy that he loved it in so many ways. So happy that he enjoyed something that every kid enjoys. And you know what? We never did make it to City Hall to get that pass. Our boy spent his time in Disneyland just the way everyone else does: hot, tired, a little sticky, and with a big, huge smile on his face.
This Side of Normal
Thursday, March 29th, 2012 | Things My Son Has Taught Me | 2 Comments
There are (a lot of) days when I think that having a son with autism is really not that big of a deal. I have wondered, on more than one occasion, if it’s fair that the government gives us a Disability Tax Credit each month. There are many times, when his brother and sister are fighting or being sassy, when I think that Tyus is my easy child. And then, there are days that it hits you: this is not easy or normal. This is just normal for us.
We’re on vacation right now and it’s times like these when the differences between Tyus and a typical child are so obvious. When you head to the airport (or out for a road trip, or…anywhere, really) you have to have a stash of Tyus-friendly snacks because he eats virtually nothing (very common for autistic kids) and you can’t just “pick something up” on the way. The trouble is that most of the food items Tyus eats require a toaster. Tough to do on a plane, train or in an automobile! Oh, and if travelling to the US, pack some Cheez Whiz because they don’t have such a thing!
You have to constantly be thinking about Tyus supplement schedule and planning ahead for it. Order the vitamin B-12 ahead of time because it has to come from Ontario. Keep it on ice during travel until it can be refrigerated. Make sure you packed enough syringes and liquid iron. And then, set several alarms on your phone so that you don’t forget to give him anything.
We are lucky because we have a place in Arizona that is set up for Tyus. The yard is fully fenced and the doors are all lockable. In other people’s homes or hotel rooms, however, you have to be cautious about the unlockable bedrooms and bathrooms and all the many things he can destroy if he gets into something.
Ah yes, the destruction. That’s probably the most obvious thing. Tyus doesn’t set out to destroy things. He just has different interests than a typical kid. He loves to tap and his current favourite tapping device is cutlery. Not crappy cheap cutlery, but good quality stainless steel cutlery. It makes the best sound, apparently. So, our selection of forks and spoons here is getting kind of rough. It has been tapped on the rocks and tile surrounding the pool so many thousands of times that it feels rough against your tongue. We try to keep it away from him or offer him alternatives, but he’s pretty sneaky and it makes him so darn happy. At home we have “special cutlery” that we keep locked up for when people come over. Perhaps we’ll use our government money for a new set here. Meanwhile, the tiles and stones around the pool have taken a beating and some of the tile is chipping.
Sometimes I think about what it would be like if I had a typical seven year old. In many ways it would seem so easy. He would dress himself without being told. He could fix himself a snack. He would be ok unsupervised. I wouldn’t have to worry about him running off in public. I could reason with him. But then I think about all the things that are so much more difficult with a regular child. He would give me attitude when I asked him to do his chore, instead of just doing it as soon as I ask. He would complain about things like going to bed and what I made him for supper. He would fight with his siblings instead of just loving them. He wouldn’t be Tyus.
I know it’s not normal what we do every day. I know it’s not easy. But if you stood before me with a pill that would make my son into an every day kid, I would refuse it. Autism is not something tacked onto Tyus’ personality. It’s a part of him. Yes, it makes things challenging, but I wouldn’t change a thing. I like being on this side of normal. I’ll just pack my little bag of snacks and head out into the world with my noisy, picky little destroyer. And I’ll call ahead to make sure the hotel has a toaster!
Labels
Thursday, March 15th, 2012 | Random Thoughts | 3 Comments
I am learning a lot about acceptance lately. I thought I had it pretty much under control. I feel like I have really mastered the acceptance of autism. I love my kid no matter what you label him. Acceptance of my other children’s labels was equally simple- ok, my daughter is clumsy and emotional (pretty sure I saw that coming; I know her mother) and my number three is girly and is getting quite proficient with makeup. I love them for who they are, not despite it. Yep, acceptance is a breeze. Or, that’s what I thought until I started to realize that the little voices in my head were not on board.
I have noticed that when Taya makes a mistake she often admonishes herself with some pretty awful insults: “Oh, I’m such an idiot” and “I’m so stupid.” After I heard it more than once, I began to realize that it was coming from me. Those exact words escape my lips every time I make a mistake. And the bar is set high. Forget the keys? You’re an idiot. Remember ten things, but forget one? How could you be so stupid? Not only that, but I recognized the labels I was sticking to my chest with fervour: Unreliable, Disorganized, Slobby, Forgetful. No wonder my daughter was starting to have confidence issues! Her mother is a poster-child!
One Saturday my sister was visiting, as is normal, and she agreed to watch the kids while I went to donate blood. I dashed out of the house and realized half way there that I had forgotten to take my identification. I was turned away from the clinic with an alternate appointment and I arrived home in tears. My sister asked what had happened and prodded me until I gave it up. I was extremely reluctant to tell her because I have labels for her, too. She is Reliable, Organized, Put-together and In-control. Everything I tell myself I’m not. I was horrified that I had to give her one more reason to recognize me for the disorganized mess I am. She was stunned to hear that I felt that way. She assured me that those labels were mine, stuck by me, and that she didn’t see them at all.
I have been telling Taya the lyrics of a song; Change the voices in your head. Make them like you instead. I realize now that I need to do some serious work on my own voices. The reality is that I’m not unreliable or disorganized or any of those things. I’m Creative, Fun, Passionate, Intelligent and Kind. I have much to be proud of and despite knowing these things intellectually, it’s important to embrace them and start to change those labels. I am looking for the faults in others that I have been missing and I’m pleasantly surprised to find that people aren’t as perfect as I thought. It turns out everyone forgets things! Who knew? I am scratching out the words on my psyche and replacing them with kind words that are more accurate. Confidence is not something I’ve ever had in abundance and I think it’s about time I found some.
Acceptance is easy in theory, but I think I’m ready to give myself the same courtesy I’ve been giving everyone else. I’m ready to make friends with my voices. I am Friendly, after all. Ooh, that’s a good one!
Date Day
Friday, February 24th, 2012 | Toddler Musings | No Comments
One day a week I take my children on an outing of their choice. It is a highlight of my week and theirs. We call it Date Day. For Taya, Date Day is Friday, when she is off school for the day. Today was that lucky day, and this is one tidbit, among many, that made me grin:
Me: Taya, what is your dream? Like, when you grow up to be an adult, what is one thing that you’d love to do? Something that you think would make you very happy?
She ponders this very carefully for a long time, her blue eyes looking to the ceiling and her lips pursed in thought.
Taya: Uhm, live really, really close to you.
Me: I love you, Taya.
Taya: I love you too, Mamma.
Epiphany
Thursday, February 2nd, 2012 | Random Thoughts | 5 Comments
When you’re a mom there is always a nagging feeling that you could be doing a better job. You should spend more time with the kids. Play more, work less. Yesterday as I watched my two littlest people play together at the craft table I had an epiphany – sometimes less is more.
Taya and Parx have recently decided that getting along is better than fighting and they spend the majority of their time playing together. For a moment, as they sat there gluing and colouring and working so diligently on their latest project, I felt like I should abandon the dishes and go over there and join them. That’s what a good mom would do, right? Throw responsibility out the window and just play. The trouble is, I didn’t want to. Then I was reminded of the hours that my younger sister and I spent playing My Little Ponies in the basement. I imagined how we would have felt if our mother had come down and wanted to play with us. Not good.
When I look back on my childhood memories, I realize that at least 80% of them involve the times I played with my sister. Another chunk would be devoted to friends, cousins, and teachers. Almost all of these memories are sprinkled with my memories of my mother. She was always there, but she was not always the centre of my world. I realize how different this is from the mother’s perspective. You feel like everything you do is so important and that making memories is all about time. In reality, you are creating a feeling more than a collection of memories. Taya is five and Parx is three. What do I remember about being that age? Not a heck of a lot – my memory is simply that my childhood was a happy one. My memories of my mom are almost all good, but I realize now that if I stand at the sink and comment on the spaceship they are making, I’m just as much a part of that memory as if I pull up a chair and help. It’s not only ok that they have activities that don’t involve me, it’s essential. They need to have relationships that have nothing to do with me. If I’m there to break up a fight or stick on a bandaid, I’m doing my job.
I realized that I should stop feeling guilty for not doing things with my children that I don’t enjoy. I don’t like putting them in a wagon and going for a walk. I just don’t. I don’t like racing cars and playing with Barbies, and that’s ok. What I do like is reading chapter books to Taya. I love baking and my kids are all finding a love of time in the kitchen. I love letting them do my hair with as much goopy stuff and barrettes as they want to use. I love puzzles. They pick up on my enthusiasm for the things I enjoy. I don’t have to pretend to be a perfectly well-rounded individual. I’m just one piece of their lives and I don’t need to do it all.
When you’re a mom you always feel like you should be doing more, but what I have realized is that I’m doing enough. Making supper while they play is being a good mom. Getting the housework done while they burn off energy in the basement is just fine. I’m here and they’ll remember that I loved them and cared for them every single day. They’ll have plenty of memories of me and, thankfully, plenty that have nothing to do with me.
Dancing
Thursday, January 26th, 2012 | Random Thoughts | No Comments
Taya is in ballet and jazz this year. She enjoys it, and I enjoy seeing her in her cute little outfit with her new friends. I was watching her one weekend. She was paying attention and following directions. She was doing well; learning and behaving. Then, toward the end of class as they often do, her instructors handed out some scarves and turned on some music and the class erupted. This is the part I love the most. There are no rules, they are just allowed to dance. They are young and they don’t care that a great number of people are watching them. They don’t seem to care about anything – they just dance and it is wonderful. When, I wonder, do we lose our ability to just let go and truly enjoy life?
What is it that makes you feel that good? When I became a mother I decided that I wouldn’t lose myself. I was determined to keep doing things that were just for me. I love to write and bake. I love to try new things and be part of a group. I do things that are just for me and I find it invaluable. Life is challenging. We lose ourselves in all the listening and following and doing what we’re supposed to. We need to take the time to do the things that come at the end. The things that have no rules. We need to grab our scarves and dance a little more often.
It’s good to pay attention and follow instructions. It’s good to be a part of the group and listen attentively. But sometimes it’s ok to just be ourselves. How can you know who you are if you never spend any time with yourself? There will always be time for responsibility. Find something that you love and, even if it’s just once in a while, go crazy. Act like you’re a five year old and class is over and you get to do whatever you want. The time to dance is now.
Just like riding a bike
Tuesday, January 10th, 2012 | Things My Son Has Taught Me | 4 Comments
I read a story once about an autistic boy who had three close friends. These three young boys took their quirky little buddy under their wing and pushed him further, in many cases, than his mother thought he could go. One summer they decided he was old enough to ride his bike. His mother was skeptical, but sure enough, by the end of the season, he was doing it. He was eight. When I read the story, two things struck me: first, it would be so nice if Tyus ever made friends, and second, I doubted that at age eight my boy would be riding a bike.
For the Christmas holidays this year we went to Arizona so we could escape the Canadian winter. Our kids love time spent in the pool and out in the sunshine. We don’t mind it either. This year, Santa thought it would be a nice surprise to leave bicycles for our kids because our younger two love to ride. This past summer Tyus rode a bike, too, but it was a tandem bike and I did all the pedalling and steering. Still, he wore a helmet and held the handlebars and he enjoyed it. We considered it a great success.
If Tyus walked into our house in the desert, saw that bright blue and white “Mongoose” and decided then and there that he was going to ride it, he didn’t let on. In fact, he enjoyed the pool so much that I almost forgot about our decision to get a bike for him. We had debated long and hard about whether or not to include him. We pondered buying another tandem, but that would require that I have a bicycle, too. We looked at special needs bikes, but they all seemed too “special”. In the end we reasoned that, since we would be on vacation, we’d have the time required to teach him.
Finally, on the tenth day of our vacation, we decided to get him out of the water and take him to the park for a change of scenery. And maybe we would get him on that bike. To my amazement, he seemed very excited to put on his helmet and he smiled when the Mongoose was being loaded into our vehicle before we ventured out. Maybe this was a good idea after all.
One of the great blessings of autism is that you never know when you will be surprised. Tyus decided that day to ride a bike. He decided to pedal his feet and to keep doing it. He decided that he would go all the way around that big circle just like his siblings. And the best part was the big, proud smile on his face when he got off that bike. I wish I could put moments like that in a bottle and show them to parents who are dealing with a new diagnosis. Those are special moments that make every struggle worth it.
Someone once told me that I had to let Tyus surprise me. Give him the chances and then let him surprise me. I try to do that, but it’s hard to remember sometimes. It’s hard to know when to hook his bike to mine and when to let him go on his own. I don’t have the answers. I’m just glad that when we arrived here, there were three bikes waiting, and that we gave Tyus this opportunity to a childhood rite of passage. And you know what? This summer, our boy turns eight…and he even has a few friends.
You can check out Tyus’ first bike ride here:
The Puzzle
Friday, December 16th, 2011 | About Autism | 1 Comment
I have always loved a good puzzle. There’s something about the slow, methodic process of putting a picture together out of chaos that appeals to me. The symbol for autism is a multi-coloured
puzzle piece, and it seems incredibly appropriate.
When I first heard the word autism in reference to my son, I shrugged it off. I knew almost nothing about autism, but surely that couldn’t be what was going on with my Tyus. Now, more than four years later, I have found the piece that I was missing back then – I know what autism is. Unfortunately, a much more important piece is still out there waiting to be found.
Tyus has had a rough couple of months. I keep waiting for that “aha” moment that has always come in the past, but so far the solutions are elusive. We have often gone through phases with our boy where we were trying to conquer some problem or ease some tension, and those answers have slowly emerged. This time, we have tried everything we can think of and we have learned almost nothing. Some nights he sleeps, others he lies awake for hours. Some days the report from school is positive (“We were so proud of Tyus today. We went to the high school and he sat with his friends through a play that was almost two hours long!”) and the next it is poor (“Tyus didn’t do much work in the afternoon. He was just done. We spent a lot of time in the soft play area”). Some evenings he easily copes with stress and others he is set off by small disturbances. He has had as many as three good days in a row, but then the bad days come back. We look for patterns, but none present themselves.
I keep waiting for that loss of hope that I’ve felt in the past, but for some reason it hasn’t come yet. It surprises me that I’m not crying more. I am frustrated, that is certain. But hopeless? Not yet. It is starting to feel as though everyone else is entering the acceptance phase of this new, unimproved Tyus and I’m still in denial. I don’t believe that this boy I’m living with right now is my son. He is a sadder, much more troubled version of my sweet little ray of sunshine. My son is in there and I am just waiting for him to return. I will find that puzzle piece. I really think I will. I grow weary of our little experiments: maybe if we cut back his sugar…what if we give him more iron…he has an ear infection, so once that clears up…but I’m not willing to give up yet and accept that he will be in and out of anguish for years to come.
He’s only seven and three months ago he was a happy little ball of energy. He is still made up of the same stuff that he was then, so there must be some way to find him again. I am willing it to happen with every day that passes. I am searching through a pile of sky-blue puzzle pieces and they all look the same. They all hold a faint bit of hope. Each time you think, maybe this one will fit, and you turn it three times before you toss it aside. It is exhausting, but for some reason you keep looking. One of these has to fit, right?
It is out there, our puzzle piece. I am certain of it. When I look into the eyes of that little boy, I am determined to find it. I remember that feeling so well – that moment when every curve sits perfectly in place and you breathe a heavy sigh. The burden of finding that piece is lifted and you wonder why it took so long to find. And then, you begin another search. I know that with autism we’ll always be looking for solutions. But, maybe that’s why I was chosen to be Tyus’ mother. I am patient and determined. And I do love a good puzzle.