Parenting For Tomorrow

“Be the parent today that you want your kids to remember tomorrow.” ~Anonymous

We hear all this talk about living for today, about being in the moment, about doing what we want right now because tomorrow is never promised to us. But, as a parent that’s not quite the way I view life. For me it’s about making sure the future is as hospitable place for my children as it can be, and that my children are as prepared to survive in that future as they can be.

I’m what you might call an “involved” parent. I’m the one who is at the school whenever there is a small issue, whenever there is a big issue, or just because it’s a Tuesday sometimes. I’ve been known to bring another sandwich because I was worried the first sandwich wasn’t as fresh by lunch time as it should have been.

But I don’t think I’m an overly involved parent. I don’t take my children to school because I don’t trust the bus system, or anything like that. I’m a concerned parent because I know that what happens to my children right now can have a huge effect on how they envision their own future, and on how the world sees them. I believe in the “teach a kid to fish” philosophy. Continue reading “Parenting For Tomorrow”

Tough Parenting

As a parent, I’m constantly asking myself if I’m doing the right things, if I’m making the right decisions for my children, if I’m helping them to eventually do those right things and make those right decisions for themselves. That’s the thin line, isn’t it, doing just enough to guide them in the right ways so that they’ll continue to go in those ways when they come of age? Sometimes I just don’t know. I hope, and I pray, and I act on what I feel is best.

Isn’t that all we can do, really?

Before I had kids I was constantly judging my mother for the sheltered life I lived as a kid, growing up with such stringent rules and restrictions. I thought she didn’t need to rule with such an iron fist, that I knew what was best for me. I was a kid, and then a young adult, who needed just that type of guidance, but I rebelled against it. I felt I knew what was best, and only when I came of age and made a series of mistakes did I start to realize just how much my mother had been trying to mold me and help me be better equipped to handle those things she knew were coming.

Now, I’m not saying to shelter your kids. Far from it. I think kids need to know what’s out there, that they need to be prepared for what they’re going to encounter, so that they’re better equipped to handle them in appropriate ways. It’s one thing I wish my parents had done more to prepare me for, but my mother did what she felt was best, my father was pretty much a specter, and I learned from those mistakes. I told myself when I grew up, when I had kids, I would be different, and in many ways I am. Fundamentally, though, I’m the same kind of parent my mother was to me, which is a good thing.

Yes Mom, I just said that.

Seriously, though, she was doing the same thing I’m doing now, trying her best to teach me to be a better human being, and to make my own decisions. When I was the age that Alexa is now she was fighting to make sure that, as a single parent, she gave me what I needed as a boy. I know that was tough, as I try to deal with Alexa and her issues now. There’s something to be said for having a partner who can deal with the “feminine” problems and feelings, and for that I am so grateful to my wife for everything she does to prepare our daughters for life. But my mom didn’t have that. I’m sure raising a boy by herself wasn’t a picnic.

I wasn’t easy. Kids rarely ever are. I was highly sarcastic (still am), a dedicated introvert (that sure changed), and a writer in the making. It didn’t help that my relationship with my sister wasn’t the best either, and having a largely nonexistent dad who was generally out of town (and out of the picture) just made things worse. But my mom taught me to be independent, to learn from my mistakes, that love doesn’t always win out in the end, and that being the bigger person is very important. She gave me all these tools I didn’t even realize I had until I needed them myself and they were there to help me.

My children have issues. Right now, in fact, Alexa is in her room screaming like a banshee because she doesn’t feel she’s being treated fairly, because she has the idea that this world is black and white when I’m doing my best to try to show her all its varied shades of gray. That was what I always loved about my mom. She didn’t sugarcoat things. If she wanted us to learn a lesson she talked to us about it. Nothing snuck up on us because we weren’t prepared for it. She didn’t let us wallow in our misery and perceived slights. She talked it out with us, even if we were still mad. It’s what I’m trying to do for my children as well.

But being a parent is tricky. Think about the number of kids who grow up to hate their parents. Think about the legion of kids who say their parents were never there for them. And while I do feel that way about my father, I have to say that my mother was as solid a foundation I could hope to find in this life. I hope I’m the same kind of solid foundation for my own children.


10 Ways From Sunday

swear-wordThere’s a thin line between wanting your children to be safely quarantined against the harsh world and wanting them to be prepared to hold their own in a landscape that is shifting, and increasingly for the worse. Someone said “MF’er” in front of my children the other day, and I wanted to slap her 10 ways from Sunday.

How dare she expose my children to something so harsh, so incendiary, so soon! After all my time of saying “fudge biscuit,” “shnikey,” and “Jehosophat,” how could someone hand my children the very verbal weapons I was trying to keep from them at all costs?

But after holding my tongue, and thinking about it some more, I realized that it’s not such a bad thing for them to hear such words. It’s the context that those words are in that is important, because then it becomes a teachable moment instead of something full of chagrin.

Pretending that this woman didn’t say what she said would have been foolish because kids pick up things even if they don’t talk about them. The key is to talk about it in the moment. So, five minutes after the incident, I sat my oldest down and talked to her about bad words, about why people say them, and about how we shouldn’t say them. It turns out she had heard what the woman said earlier. She just hadn’t mentioned it.

That’s the glory of having children, honestly. They take in so much more than they let on, hording everything until such a moment when they deem it worthy to share. Most of the time the moments they choose are highly inappropriate. So why not take those times that fall into our lap, instead of wincing and hoping they didn’t hear, to educate them on the words we should use and the ones we should avoid?

My mother was all for leaving it alone, for pretending it never happened, and as I got older I faulted her for this. I knew the whole cadre of words, but I never said them. I held them all inside, until I became a teenager, and I got a few friends. That’s when they call came tumbling out, and at the worst times. That’s how I know it happens. I know what she thought, that she was shielding me from the harshness of the world, and I am grateful for her motives, but the world gets in anyway.

And maybe it’s just the world we live in nowadays too, the widespread belief that anyone should be able to say anything to anyone at any time without fear of reprisal. Perhaps it’s the me-first mentality that permeates our nation and our world. Or it could just be the parents who swear at their children every single day, who see nothing wrong with using that language. Whatever it is, though, our kids are exposed more than we were growing up, so there are more moments to be there for them, to explain why those words are wrong to say, to teach them how to stay on this side of that thin line.

Or we could simply go with our baser instincts and slap that woman 10 ways from Sunday. That’s still an appealing choice to me even though I know it’s wrong. I blame the world we live in.


Maddie Comes With a Person

wp-1458090495727.jpgWhen my child’s aide walks into the classroom without Maddie several of her classmates say, “Where’s Maddie? Is anything wrong with Maddie?” and I don’t necessarily like that. While I appreciate that they care about my daughter, I also know that if they’re linking the two of them so completely they don’t see Maddie as a singular individual, capable of functioning without her aide. Because, to them, Maddie comes with a person.

We’ve worked hard to make sure the aide doesn’t accompany Maddie to music class, where our daughter does an excellent job staying on task and working hard for the music teacher, and we will be extending that to library time this spring as well. It’s baby steps, but it’s something. Don’t get me wrong. We love having the 1:1 for the times when Maddie needs to have someone help her out, but those times are getting fewer and farther between as she grows up.

I’m surprised when I hear others say how much they rely on their aides, how much they think their child can’t do without another person there to assist or to do it for him/her. And I know that every child is different, that each one occupies their own unique place on the spectrum, but isn’t that what testing is for? Shouldn’t that help us determine how little or how much assistance Maddie needs during her school day?

For example: the bus, which I’ve talked about before. Things are getting better on that front. Maddie doesn’t need constant supervision of the monitor while going to and from school. She is very conscientious and does everything exactly as she should, the model bus passenger. We’re happy to have the monitor on the bus in case anything happens that is out of the ordinary because Maddie doesn’t do well with a break in routine, but other than that we expect her to be sitting with the other children, engaging in social interaction.

The same is true of the general education classroom. We are huge proponents of inclusion, of having her in the general ed classroom as much as is humanly possible during her school day. While we know that in terms of math and reading she needs to be pulled out and given modifications, for writing and various other tasks she can stay in her classroom and do exactly what her typical peers are doing. We bask in that when we hear from her teacher that Maddie was working hard in class writing just like the other students, and doing it on her own so often as well.

So, yes, Maddie comes with a person, but we want to try and make it as unobtrusive as possible. We know she will need help, that she won’t ever be “just like” all the typical students, but we want her included as much as possible, which means eventually we’d like the aide to be extra, there but not heavily involved in our child’s progress, a resource, not a crutch. And we’re hoping that as time goes on everyone else in the school system understands and helps us achieve this. Music was a start, library is next, but this is still only the beginning.


Front of the Bus

school-busOur latest issue is also one of the first we had to face once we began Madeline’s inclusion track at our local school: the dreaded school bus. Ever since Alexa began going to school she got to ride the bus, and Madeline would stand on the porch and wave to her big sister. She would tell me, “Bus too,” and I knew she was jealous. She wanted a chance to ride the bus like a big girl too, and we could see her champing at the bit to do just that. Last year that time finally came, but it wasn’t quite like our hopes and wishes for our youngest child.

First there was the problem of what I call “too much aiding.” Having a monitor on the bus is great. Knowing that there is someone there in case Madeline needs assistance is a positive thing, don’t get me wrong, but the first monitor fell into the pattern of basically dragging her onto and off of the bus. She could already climb stairs proficiently then, even if it took the two feet on one step process to accomplish it. But morning after morning, and afternoon after afternoon there was the monitor, hauling her up and down. We squashed that pretty quickly.

Then came the seating situation, and it’s the issue we are currently fighting for what is the umpteenth iteration of it. Yes, the monitor is on the bus primarily to keep watch over Madeline, and the other girl with DS who rides the same bus, but we began to notice a routine pretty much every day. The monitor would always sit in the front seat, and Madeline would somehow end up beside her — on the inside by the window. What this did was to effectively ostracize our daughter from the other children on the bus, emphasizing her status as “other,” when what we want is true inclusion, with at least the chance for Madeline to be with her typical peers at ever possible opportunity.

The bus ride, while only a short distance, qualifies as such an opportunity.

So we called the CSE office and outlined our concerns. We wanted Madeline away from that inner seat. A few years ago a friend of ours had a son with DS who we would see ride the bus when Alexa got picked up, and every day there he was, riding in that same window seat with the monitor on the outside. We said we didn’t want the same thing for Madeline, that we wouldn’t stand for that kind of treatment. We understood that they weren’t trying to do anything to ostracize her, but the end results were the same, and we weren’t pleased with the end results.

I never thought I’d be dealing with a ‘front of the bus’ problem in my life.

Things changed back then, and Madeline began sitting with other kids, no longer confined to that inside window seat, and she began to branch out as well. Sometimes the bus would pull up in the afternoon and she would be sitting next to another student and they had obviously been talking. Sometimes the bus would pull up in the afternoon and other children would wave to her, saying “Bye Maddie,” like they were little buddies. It’s the small things, and we appreciated that we were able to effect change.

Then, about a month ago, the children were assigned seats on the bus, unbeknownst to us because Alexa doesn’t share that information, which is where we generally get our information from school. We found this out because we realized that Madeline was once again in that seat that we thought we had cleared up last year, and that had been a point of emphasis with us all along. The way the bus pulls up to our current living quarters it is difficult to tell that, but one morning Heidi noticed it, and that’s how we found out they had assigned seats, and that they had assigned Madeline to the very seat we said we didn’t want her having, that we had been so vocal about.

Understandably we were livid. A game of phone tag later we were able to speak with the CSE chair and we laid out our concerns… again. It felt like some horrible sense of deja vu, like we were fighting for something that would end up being elusive once again, that we were in some kind of twilight zone where up was down and down was up. It felt like no matter what we said eventually there she would be again, in that inside window seat, with the monitor between her and the rest of civilization. But the very next day after our conversation she was with another little girl a seat back, not sitting with the monitor.

And I hope that’s her “assigned seat” now. But we’ll be watching, just in case.


The Thin Line

My daughter Madeline has Down syndrome, and I’ll admit I knew almost nothing about it when we first found out. For the vast majority of my life it didn’t affect me so I didn’t bother to get information on it. Instead I lived in a sort of dream world where I thought that since it hadn’t affected me then it wasn’t going to affect me. So when she was born I had a lot of catching up to do. I still have a lot of catching up to do.

But I’ve found out several practical things about having a child with Down syndrome (DS) that the books don’t talk about, either because they don’t know, or because there is really no way to make you understand if you don’t have a child with DS. Here are a few…

  1. The simple things are the most important.
  2. Get used to fighting battles with ignorant people.
  3. There is a community for support.
  4. Every single individual with DS is different.
  5. DS doesn’t define Madeline.
  6. Daily routine is a must.
  7. There are many programs, grants, and monies for those with DS.
  8. Sometimes it’s okay to sit in a room and cry.
  9. Being informed is 2/3rds of the battle.
  10. There’s a thin line between ordinary and extraordinary.

Fighting with the educational system to get inclusion for Madeline has probably been the biggest battle we’ve faced so far, and that we continue to face even now. She’s in first grade, and she has an amazing teacher and support staff, but it’s taken a lot of effort on our part to make sure everything was in place and is being enforced so that Madeline can truly be included with her typical peers. I hate that word — typical — by the way, because it implies that Madeline is “other,” that being typical is the right way to be. It’s just one way of being.

When she first started school we had already gone through tutoring for speech, and had received monetary support for other supplements to make the transition to school that much easier. And she spent three years in a pre-school program at UCP (United Cerebral Palsy) to assist in her social skills as well as to help her with routine. Those years were dynamic, and we noticed a lot of progress she made in that system, where she was in class with typical peers as well as those with disabilities. That was true inclusion, and we hated to leave after those three years were up, not just because of the time spent there but because of the unknown that awaited us on the other side.

Enrolling Madeline in a typical elementary school was a bear, to say the least. From the very first CSE meeting, where the principal was off-putting, comparing the school to a car dealership and us to consumers looking to purchase what he was selling. It was a stressful time, not just because of that meeting, but because of what it portended — that our child was welcome in the school, but that the school was only going to be able to provide so much for her.

We requested a 1 to 1 aide, and they gave her a shared aide, saying that it was more feasible that way. More feasible for them, of course, but we gave ground on that one, preferring not to make too many waves and waiting to see if the shared aide would indeed work. It did not, and they caved only a month into the year, getting 1 to 1 aides for both children who had DS in that one kindergarten classroom. We were vindicated, but we did not gloat. Instead, we settled in for what we realized even then would be a series of challenges to get our child through elementary school and beyond.

Because there’s a thin line between ordinary and extraordinary, and our child is the latter. We just need to keep making sure others can see that as well. So we fight, and we celebrate each small victory along the way to where we want to be, and where we want her to be.


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