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.
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.
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:
http://www.flickr.com/photos/74049911@N05/
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.
Overheard at our house during play time:
Parx: Mom! We’re going to the moon for five days!
Me: Uh huh.
Parx: We are going to bring you back some toys. And some more flowers.
Me: Oh, really? Wow.
Parx: See ya, Mom! Now…we just need to make a spaceship.
Me: Ok, how are you going to do that?
Taya: We just need some tape and some scissors for a door. And…
Parx: Yeah, and we’re going to use this yarn.
Taya: And we can bring Tyus.
Parx: Yeah! We can bring the camper (note to the reader: we don’t own a camper).
Taya: And some craft supplies!
Parx: And some craft supplies for Tyus. And if he wrecks his craft supplies we can just get more.
Taya: We could go to Superstore.
Parx: Superstore doesn’t have craft supplies.
Taya: The dollar store does! We can go there!
Parx: Yeah! And we’ll need a truck to pull the camper.
Taya: But we can’t drive a truck.
Parx: Well I know how.
Taya: We could bring Jared (note to the reader: Jared is their 15 year old cousin and apparently the first person they think of when listing people who know how to drive).
Parx: Yeah, and we need some feathers!
Taya: Yeah, don’t worry, there’s feathers!
Parx: We can do this, Taya. We can TRY to do this.
Taya: Yeah, we can TRY. I’m not sure, but we’ll try.
“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.
Me, only a little angrier.
I call it Post Social Anxiety Disorder. As far as I can tell, it’s not an actual disorder, but it should be. It used to be (not that long ago – ok, it still happens) that I would come home from a social situation and feel a great deal of anxiety about what I had done or said. Uh oh, was I too loud? Did I talk too much? I was too opinionated, I know it. Oh man, I can’t believe I said that, that was so stupid. I refused to change, however, because one of the feelings stronger than the anxiety was my belief in authenticity. I had long since decided that I value being my true, authentic self above all else. So, I continued to be loud and then fret about it later.
I confessed to my sister once after Pie Club about it and she was shocked. She said she couldn’t believe that I felt awkward about my social presence. I was, she said, often the best part about a get together. I was certain that she was just trying to make me feel better. After all, I am loud and opinionated and chatty. Surely other people must find that annoying. After that, though, I would call her after a social event where she had been present and grill her about it: ”Ok, remember when I said that? That must have been over the top. I talked about that for way too long.” Each time she would reassure me that she was sure no one at the gathering would feel that way. I began to wonder if I was inventing the whole problem.
Then one day we went to Pie Club and I showed up late. Later she told me, as I confessed my anxiety again, that she had noticed that before I arrived it was terribly boring and no one had anything to say. The whole thing was full of awkward pauses and everyone was scrambling for ways to fill the silence. When I arrived, she said, everyone felt at ease as I told jokes and stories and discussed their lives with them. Shortly after that incident, I went to a party at my girlfriend’s house and when I entered the room I noticed that everyone was just sitting there, quietly looking around the room and playing with their napkins and juice cups. A few minutes later we were all talking and laughing and telling jokes. That was when it hit me: she was right. My loud mouth was not a detriment at all.
Since that day I have had multiple incidents where I have being at ease in the presence of bold, chatty icebreakers like myself and I’ve decided that as a group, we are fantastic. I’m not going to tell you that I don’t still have those moments that I say something I later regret, but I think they are worth it. I’m not a mouse and I no longer think that I should be. I know a lot of quiet people that are wonderful, too, but that’s not me. I’m loud and I’m verbose and I have finally come to terms with that. I am Kristeen, hear me roar.
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
I’m a great believer in luck, and I find the harder I work, the more I have of it. -Thomas Edison
Have you ever noticed that there are people for whom life just seems to work? People who always seem to land on their feet? And, of course you have observed that there are the other people, also. Those who can’t seem to catch a break and whose lives are always in a state of disrepair. I have always believed (and with more conviction all the time) that we make our own luck. That whatever we think to be true, becomes true, or, as Henry Ford put it, “Whether you think you can or whether you think you can’t, you’re right.”
I have overcome a great many negative inner voices in my short life. I have had voices of insecurity and voices of depression. I still battle with voices of uncertainty, though I’ve noticed lately that they aren’t as loud as they used to be. A few nights ago I spoke to my daughter for the first of, I’m sure, many talks about self-esteem and I told her that possibly the most important thing she will ever learn is that she can change the voices in her head. If she can master that, she can do anything. It’s a difficult skill, but if she doesn’t hold herself back, nothing else will either. I think some people have not only failed to control their beliefs about themselves, they have no idea that they can.
I have always said that I live a charmed life. Nothing bad ever happens to me. If you know me, you have no doubt heard me utter those words. One day my brother pointed out to me that some people might consider having an autistic son a bad thing and I realized this: perhaps all that separates me from a person whose life would be ruined by autism is my outlook.
If you think that your life is out of control or that you are destined to live a certain way, then the chances are your reality parallels those beliefs. Does everything go wrong just because you expect it to? Maybe your whole world is one giant self-fulfilling prophecy.
Does everything go my way because I’m lucky? Maybe, but I think that I spend my life feeling lucky because I expect everything to go my way and I make choices to support that. I can handle anything that comes at me and I demand that life be challenging and rewarding.
Expect that your life is going to be amazing, make smart choices, seize opportunities and then wait for your luck to turn. No rabbit’s foot required.
Ready to go!
It’s the first day of Kindergarten. Taya is so excited to ride the big yellow school bus. I fill her backpack and we head to the bus stop just in time. She looks so little and so big as she climbs aboard and she barely looks back. She’s off. I am heading to the school, too, because I have her big bag of supplies and gingerbread dough for the teacher. Everything is going according to plan, or so I think.
I arrive at the school and discover that I’ve beaten the bus. Other parents are waiting and I join them. Only when the teacher wanders in with a few little people do I start to wonder where Taya is. She’ll be here soon. A couple minutes pass and suddenly it hits me – I forgot to give her a bus pass. The bus pass contains information that helps the supervisors at the transfer station get the children to the right bus. I put my sweet, innocent five year old on the bus on her very first day of kindergarten with no bus pass. Immediately I picture her crying and being consoled by some teacher or bus driver at the wrong school. I feel like the worst mother in the world.
I tell the teacher what I’ve done and the teacher’s aid whisks me off to the office to try find my daughter. She must be so scared, I think. I try to tell the office staff the problem and I burst into tears. How could I have done this to her? I call the transport office and while I wait on hold a staff member wanders in with Taya.
She’s not crying. In fact, she has an ear to ear grin on her face. ”Hi, Mom!” she says, “I saw Tyus down the hallway!” I laugh and hug her. I ask her if she went on an adventure because I forgot to give her the bus pass. ”I was wondering where that was!” is all she says. She knew what school she was supposed to go to and they made sure she got there. She’s not upset. She doesn’t hate me. She’s excited because today she starts Kindergarten. I’m so proud that we’ve done what we’ve been working so hard to do – we’ve raised a little girl who’s independent enough and resilient enough to not be bothered by a little mishap at the bus stop.
Later the teacher and I laugh about how easy it was to learn Taya’s name and as I turn to leave she says, “Just think of all that we’ve learned about Taya already!” How true, I think. It turns out that on the first day of Kindergarten, it was Taya who was doing the teaching.
