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.
Right now teachers are sitting at their computers and children are tucked in their beds. Lunches are prepared and resting in backpacks along with pencil boxes and labelled crayons. Final plans are being made by moms and dads to get their precious little ones off to school tomorrow. The night before the first day.
I’m not nearly as terrified as I was last year at this time. Tyus is going to the same school and he even has some of the same wonderful kids in his classroom. He knows the building and most of the people in it. Still, on this night before, it feels like something big is about to happen. And it is – my little big boy is going into grade two. Interestingly enough, tomorrow is also the day my Tyus turns seven. Seven years ago, this was the night before I became a mother. These evenings, these night-befores, are some of my favourite. Yes, they are scary, that’s for sure. But, they are also very exciting.
My favourite thing about life is its unpredictability. I love that we never know what is waiting on the other side of the night before. Seven years ago I had no idea what motherhood would hold for me. I expect grade two will bring amazing things for all the little seven year olds that will sit in Mrs. Majeski’s room this year. I’m sure there are adventures and stories and tragedies and triumphs that are just ahead, in the chapter we are about to read. I love that a year from now I will be able to look back on Tyus’ eighth year and ponder how he’s grown and changed. But most of all, I love that I have no idea what that will be like. The best part of the adventure that we have to live it to know how it all turns out. I feel so lucky to be here imagining what is in store for us.
So sleep well, little boys and girls, and print off your plans, teacher, because tonight is a big night and something very big is going to happen when you wake up. And you, my reader, maybe tomorrow is a big day for you. Maybe you can have a fresh start, too. Afterall, do you know what tonight is? It’s the night before.
“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.
We are happy. Not the kind of happy where you say you’re happy but really, behind the scenes, there are issues that threaten to upset the balance. Really, truly, happy. We love being together and we enjoy each other. We’re friends. Today is our 10th anniversary and a great reason to be grateful.
I wish I could tell you the secret – and I know that some of you need it – but I honestly don’t know what it is. We keep hearing about couples who are not making it, couples who have come to a point that they aren’t sure they’ll come back from, and it makes us sad. We don’t want to be that couple. Our plan is simple – just keep being happy. Just keep caring about each other. Sounds easy, and to us it is.
They say that a good marriage is 50% finding the right person and 50% being the right person. We did a great job on our first task and now we are committed to the second. My goal as a wife is that Tim could walk into a stadium full of people and feel like no guy in there is as lucky as he is. I care about him and every day he makes me feel the same way.
We don’t hold hands and we don’t snuggle on the couch. We go on the occasional date night, but we don’t kiss in public and we don’t gaze into each other’s eyes. We’ve talked about renewing our vows, but we both think it’s kind of cheesy. We like to eat dinner together and when there’s a funny moment on our favourite sitcom, we look at each other so we can laugh together. It’s a simple, every day love and I think it’s perfect.
I always say that I am lucky. I lead a charmed life. Nothing bad ever happens to me. My life has been full to the top of wonderful moments, but the greatest thing that ever happened to me was marrying Tim.
Happy Anniversary honey. Same time next year? I’ll see you there.
We’re on our summer trip to Montana and I am having a great time. I’m enjoying the freedom that has come our way because we’ve brought Taylar along with us – a friend to help with the kids. When Tyus wants to explore the treadmill or tap on the rocks by the beach for an hour, we can be pulled in three directions stress free. There are times, though, since I’m a mother, that I feel guilty. Afterall, if Taylar is with one of the kids, I’m not. Maybe, I worry, they’ll like her better than me. She is pretty great. But, I am forgetting one thing – I’m their mom.
As the trip goes on, the kids let me know in subtle ways that I still hold an important place. When Taya gets sick, she calls out for me. When Parx needs to go to the bathroom, he wants me to go with him. Tyus comes and asks me to lay down with him so that we can snuggle like we do at home. I’m their mom and even though someone else is hanging out with us, the countless memories we have made over time are still with them. ‘Mom’ (or Mamma in our family) is a special title, and as I hold a sick little girl in my arms or wipe a poopy bum or get an eyes-closed hug, I am reminded that they love me. And when this trip is over, or the countless others that follow, I will be the one who goes home with them. I’m the one they come to with their owies and their excitement. Afterall, I’m the mamma.
