Things My Son Has Taught Me
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.
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!
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 Other Side
Tuesday, November 1st, 2011 | Things My Son Has Taught Me | 4 Comments
“When you’re going through hell, keep going.”
-Winston Churchill
I try to have a positive outlook on things, autism in particular. I try to pass that positivity on to all of you, and as a result I usually blog about how we have weathered some autistic storm and what we’ve learned and how everything works out. I’ve been wanting to write that post for you, but the storm isn’t passing and the truth is, when you’re going through it sometimes the best thing to do is recognize it.
Over the last few weeks Tyus has not been doing well. He had an amazing start to his school year and when people asked me how he was doing I felt like I couldn’t be positive enough. He was doing perfect. Yeah, he still had autism, but he was going to school and loving it. He was sitting through science class and his peers loved having him. At parent teacher interviews his teacher thanked me for letting her teach him. I felt like we had hit our stride and we had it all figured out. I should have known better.
Last week I kept him out of school all week because we were worried that he might jeopardize his relationship with the other kids. He is biting at home and biting his aide at school. Things are bad. He is so frustrated with what his brain is doing to him. In the last week he has had a few good days and he is like a different kid. He is calm, happy and has no trouble coping with stress. When he has a bad day, like today, I can see in his eyes that he is as exhausted with his lack of control over the situation as I am. He looks at me as if to say, “I’m sorry. I need help. Do you understand what’s happening?”. Cognitively he is as sharp as I’ve ever seen him. He understands everything I say to him and he is trying to solve the mystery with me. He is as desperate as I am.
Tyus has always had ups and downs. Actually, I don’t know a single parent with a special needs kid who wouldn’t say the same thing. I should have known that our perfect state wouldn’t last. Just one of the things I’ll remember for next time. The good news is that I have learned a thing or two from our past experiences. I have been here before, but last time I felt hopeless. I will never forget that feeling as long as I live. This time I am certain that we’ll get through it. I’m certain that we’ll figure out what has changed and why it has had such a profound impact on our boy.
I talk to Tyus about the situation as much as I can. He is extremely smart. I tell him that I understand that he is not feeling right and that he’s frustrated. I tell him that we’ll figure it all out and we’ll get him back to normal. I wouldn’t tell him those things if I didn’t whole heartedly believe them. Do I have doubts? Hell yes, I do. I worry that maybe this will never change and that he’ll deal with this prison for far too long. Even as I write that, though, I feel that it’s unlikely.
I’m writing all of this because I think it’s important that I don’t just tell you about the good side of autism. Sometimes it is really hard. I don’t say that for pity or so that you’ll appreciate my normally sunny outlook. I say it because it’s true. Sometimes parenting is hard. Sometimes life is hard. The important thing is that you just keep putting one foot in front of the other. You try, you fail, you learn. And eventually, you reach the other side.
A Letter to the Parents of Good Kids
Thursday, October 13th, 2011 | Opinion, Random Thoughts, Things My Son Has Taught Me | 1 Comment
Dear Good Parents,
I know that the parents that hit their kids and ignore their kids and don’t teach their kids a damn thing about being good people get more gossip time. I know that no one ever tells you how important the lessons you’re teaching your kids are. But I’m here to tell you that it’s not going unnoticed.
I read an article the other day about a little boy who was bullied until he ended his life. He was eleven and he was disabled. It rocked me to my core. I’m terrified that when Tyus hits junior high he will be picked on because he’s different, but do you know what gives me hope? The fact that I know that story upsets you, too. I see your kids in the classrooms that my kids are in and I can tell that you care. I know that you are teaching them how to be kind and friendly and tolerant of differences. I see it every day when I stop by the school. They are so wonderful. They are so sweet and empathetic and understanding. You taught them that and I can’t begin to tell you how grateful I am.
In my heart I believe that Tyus is amassing an army of protectors. I know that there are still lousy parents out there that aren’t teaching their kids that a kid with autism is still just a kid and that he has feelings and rights just like they do. But I also know that you’re out there and your kids are becoming friends with Tyus and they are asking questions about autism and they are turning ignorance into acceptance every single day. So when that bully comes along, your kid will be there to stand up for Tyus and say the words he can’t. The words you say are saving my kid 7 years from now from being treated like he is worthy of less. You are making a difference to me every day.
So, thank you for teaching your child the meaning of words like empathy, conscience and self-control. Thank you for explaining that different doesn’t mean worse. Thank you for being part of the solution. I know we can’t stop all the negligent parenting and change all the mean kids, but I believe there are more of us than there are of them, and I believe that our kids are going to make a change.
From the bottom of my heart, thank you for raising such amazing little ambassadors for kindness. You are the unsung heros.
Kristeen
On Autism and Plow Winds
Sunday, August 7th, 2011 | Random Thoughts, Things My Son Has Taught Me | 2 Comments
“Hey, Taya?”
“Yeah, Mamma?”
“How do you eat an elephant?”
“One little piece at a time.”
“That’s right, honey.”
It’s a kid joke, but I use it to remind myself and our kids that every daunting task is just a series of small steps. Tim’s family farm, where he grew up and made a childhood full of memories and where he was taught his strong work ethic, was hit by a huge storm recently. The damage was extensive and the cleanup is overwhelming.
There have been many times since Tyus was diagnosed with autism that I have felt flooded by all the things I should be doing for him. In fact, there are few days that I don’t feel that way. I should make sure I read to him every night. And I should definitely be playing more turn-taking games with him. And I have to make a better effort at getting him to use his fork. The list goes on and I know that I can’t do it all today.
This week we visited the farm so Tim could help his parents and I was struck by the similarities between our elephants. It’s hard to know where to begin. Sometimes the big picture is just too big. There are many things to be grateful for, but it can be hard to keep them in mind when you are faced every morning with a new challenge. I have learned to be positive and to just worry about that next bite.
I never saw autism coming. It came out of nowhere, like a plow wind to a beautiful farm yard. I didn’t ask for it but, like so many of the challenges that we all face from time to time, there is really only one option. We have to wake up each day and keep going. There is a sadness that comes with having to deal with something you didn’t choose, but there is a strength that comes with it, too. When you look up at that elephant it takes a lot of courage to steel yourself to the task at hand.
My child may never be “normal” and Tim’s childhood home will never be the same, but the only way to go is forward. So tomorrow I will pick my fork back up and I know Tim’s parents will do the same. And one day we will look back and realize we’ve done something amazing, one little piece at a time.
Public School
Friday, June 10th, 2011 | Things My Son Has Taught Me | 1 Comment
Last year at this time Tim and I were in the process of making one of the most difficult decisions we have ever had to make – what to do about Tyus’ education. We decided to put him into a regular grade one classroom. The world, I argued, is not made up of people just like him. He would, sooner or later, have to adapt. I told Tim at the time that if nothing academic was achieved and all that we could say at the end of the year was that nineteen other little people in the world knew what autism was and didn’t think it was so bad, we would have a lot to celebrate. I had no idea what the next ten months would bring.
The beginning of the year was rough. I spent the first few weeks of school waiting for the phone call to say that Tyus had had enough and I could come get him. His teacher didn’t yet understand him and his peers were busy adapting to grade one themselves. Soon, though, things fell into a comfortable rhythm and Tyus was enjoying school more and more. He was asking to go on his mornings off and we decided to put him in full-time.
His daily work started to amaze even me, and I like to think that I set a pretty high bar for Tyus. He began to trace letters when last year he couldn’t copy a single line. He started to learn the position of letters on a keyboard. He learned motor skills that allowed him to wave and later begin using some sign language, when previously his brain could not send such a message uninterrupted.
Socially he blossomed. He made leaps and bounds in his ability to adapt to new situations. He began to single out classmates as friends. The amazing children in his class bonded with him and accepted him. They learned almost as much from Tyus as he learned from them. His teacher fell in love with him and even suggested that she would like to teach him another year.
When I look back on the decision we made, I feel that any other choice would have been a terrible injustice to Tyus. I am so proud of the school system that our children get to be a part of. It works for our son with autism and it works for our typical children, too. What a wonderful thing that we can teach our children such fundamental skills as literacy, numeracy and tolerance in one classroom.
In the end, I think public school did its job on several levels – it taught my son, his peers and his teachers. The thing that I didn’t see coming was the education I received. But, hey, Tyus isn’t the only one learning something new every day.
Why Autism Doesn’t Suck
Friday, April 8th, 2011 | About Autism, Things My Son Has Taught Me | 3 Comments
Different means nobody’s ever the same. All bodies are different and so are all brains. Different is what makes the world so great. Different is never something to hate.
-Jamie Lee Curtis (Big Words for Little People, HarperCollins 2008)
I recently watched a video about autism that infuriated me. It was a collection of mothers talking about their autistic children and the struggles of raising them. I considered posting a link to it here, but it was so negative that I think your life will be better if you never see it. Not one positive thing was said about autism. I am here to tell you about the beautiful side of my son’s disorder.
Autism is not without hardships. At no point will I ever lie to you and say it’s easy. Why do we want to believe that easy is better? Sometimes the most difficult things, the things we fight for the hardest, are the most rewarding.
My son is teaching everyone around him how to be more tolerant. There are a group of grade one kids that light up every day because he enters their classroom. His siblings are growing up knowing that different can be a very good thing. I have learned to look at people with disabilities and their families in a new light.
My typical children can do things that Tyus can’t, but he also has skills that they lack. He has an amazing set of physical abilities and he is extremely empathetic. He is enthusiastic about school and the people he loves. And I would be very happy if either of my other kids ever listened as well as Tyus does, or were half as compliant.
Tyus never does anything wrong just because he wants to be bad. He has not one spiteful, rude bone in his body and the only attitude he gives me is positive. He never lies or tattles and he’s never in a bad mood.
Because of autism, I am so appreciative of the gains Tyus makes. I compare him only to his former self and I celebrate the things that he can do because they are just as worthy as the things other children learn. I’m a better mom to my other kids because of what autism has taught me. I use wonderful teaching strategies that I’m only privy to because of the professionals that have taught me about how Tyus’ brain works.
Autism is not a curse. It has made me a better person and a better mother. It has had a positive impact on my family that is beyond value. It has brought my husband and I closer together. It is teaching everyone that Tyus encounters that differences are not always negative. I owe a great deal of gratitude to autism and it upsets me that so much negativity is associated with it.
I hope that Tyus grows up knowing that autism isn’t a bad thing. I hope that you believe it, too. Autism is a part of who he is and it makes him different, but not worse.
My Megaphone
Thursday, March 17th, 2011 | Things My Son Has Taught Me | No Comments
I always tell people that if I had a megaphone to the world there are two things I would say about autism. Well, maybe three. So, world, thank you for coming out today. Here I go.
First, I want you to know that everyone with autism is different. In the last three years I have met a number of people with autism and not one has been the same. Just because you have seen Rain Man or your friend has a friend whose kid has autism, you still have a lot to learn. Of course, there are some things that all people with autism have in common. I just want you to know that each person with autism is a unique individual and they have their own gifts and challenges.
Second, autism is not the end of the world. Just because my son has autism doesn’t mean that I’m sad or that you should feel sorry for me. My life is not worse because of my son’s diagnosis. In fact, it’s probably better. I know that it is impossible to understand, especially if you’ve never met Tyus, but I actually think that autism is one of the best things that ever happened to me. If you know someone with autism, or you think that your child may be on the road to diagnosis, I think you should know that life is not over. Stay positive and you’ll soon learn that life with autism is not bad, it’s just different.
I guess the only other thing I want to mention is that I really think that as more questions arise about autism, it’s always best to rely on science. There is a lot of bad information out there, and a lot of theories, but answers are only valuable if they are right. Try not to believe everything you hear.
Thank you all so much for taking the time to listen. If you’re lucky you’ll get to hug someone with autism today. I’ll be hanging around afterwards and, as always, I’m available for questions.
Then again…
Friday, February 18th, 2011 | Things My Son Has Taught Me | 3 Comments
I distinctly remember thinking, one day after a frustrating attempt at trying to get Tyus to decorate some baked goods, that at least I had Taya. Tyus will probably never want to make cookies, I thought, but I have one normal kid, so I’ll be able to do all of those kinds of things with her and he will give me other things. I was half right.
This week Tyus has broken a total of 15 eggs. One day I came downstairs to find him with a bowl in one hand, an eggshell in the other, a half-dozen eggs on the floor and a very guilty look on his face. Two days later Tim found him in a similar predicament, but this time the other half of the carton had been mixed with some whipping cream. The kid wanted to cook! I tried to show him how to ask for cooking on his iPod, but he was determined to do it on his own – the next morning my mom found that he had successfully cracked another egg into a frying pan on the stove.
Tonight I was home alone with Tyus and I figured we would bake some cookies. He didn’t want to put the apron on, but aside from that, he was involved in every single step of the process. He melted the butter, he measured all of the dry ingredients, he turned on the mixer, he used the scoop to drop a total of 40 cookies on the baking sheets and yes, he cracked the eggs. He never once got off his chair or lost interest. This may seem like a small feat, but this is the same little boy that, only 3 years ago, wouldn’t even look at another person. The same little boy that couldn’t focus on any one task for more than 30 seconds at a time. And yet, there we were, together, for more than 30 minutes, doing something that I once thought would never happen. It was a powerful moment for me. Not because of the task we had completed, but because of what it meant for every other task.
I have thought the cookie thought about a million other things. At least I have Taya so I can sit in the stands and cheer. No big deal, I have Taya and she’ll sing at the Christmas concert. I’m so glad I have Taya so that I can watch my baby get married.
I don’t care if Tyus never plays a sport or sings a song or gets married, just like I didn’t care if he ever helped me bake cookies. The point is, our little chocolate chip adventure made me realize that maybe some of the things that I thought would never happen are just a few surprises away. If he can bake cookies, who knows what else he can do.
I was right that Tyus would give me other things. He has given me so much. And you know what? The best thing he gave me today wasn’t a chocolate chip cookie, it was the same smile he gave me yesterday.
But, damn, that was a good cookie.