Archive for November, 2013

There are days I don’t think much about raising a child with a disability, and there are others that it seems overwhelming. I’ve written about a few of each of these kinds of days, I think, but today’s is going to be in the latter camp.

It’s funny: most posts I see online now that address Down syndrome are those “they are very special” or “they have impacted our family and others,”  etc. etc., inspirational kind. And they’re generally lovely and inspirational. At the same time, there are certain realities that come in between all that (just as with all child-rearing: the highlights are worth writing about, the so-crazy-they’re-funny-in-retrospect moments are worth a blog post, but the everyday stuff in between gets glossed over). In my case, as the mother of a 15-year-old daughter with Down syndrome, I have learned that there can be many, many moments of frustration and some embarrassment.

Here’s the thing: people with mental and emotional disabilities have a much more difficult time learning the social niceties. We take for granted that all of us after a pretty young age “get” the “rules” of appropriate behavior in our particular culture. But those who don’t “get” them stand out pretty starkly. Toddlers are excused from these rules, though their parents may smile ruefully. And, yes, people with obvious disabilities are kind of “excused” from the rules as well, or at least those who are mostly kind and observant are fairly understanding and downplay whatever’s said or done. But a toddler learns quickly and grows out of that stage and becomes another person who expects others to follow the rules.

My teen hasn’t grown out of that stage. She’s 15 now and still kisses people when she shouldn’t, pokes their belly buttons or other body parts, and shares all kinds of information that we deem to be private. Since she’s a young woman now, she has been menstruating for about a year or year and a half. That means we had to deal with her grasping the concept that she would bleed on a regular basis and it isn’t something to worry about. It also means we get to deal with her fluctuating hormones and moodiness, which isn’t quite as easy to explain or help her understand. And it means that she will say to anyone that “she has her pad.” Aiiieee! Whereas most teen girls would be mortified for anyone to know that they are having their period, even though chances are a quarter of the females around them are experiencing the same thing, mine is perfectly fine with declaring that information in any mixed company.

Here's the 17-year-old with the 15-year-old.

Here’s the patient older sister with the 15-year-old.

Then there’s the issue of boys and girls interacting. She’s at an age where her peers naturally are fixated on their relationships with the opposite sex. Her older sister and our exchange student, both older than she, are dating and sometimes kissing their boyfriends. All cute and sweet and perfectly innocent. Unfortunately, it’s another new and interesting phenomenon that Marissa has to talk about. She shared in Sunday School the other day to the whole class and the teacher that her sister had kissed her boyfriend. Older sister was there, wasn’t embarrassed about the information being known, but that it was being shared publicly at church. Just not the place or time, as most of the rest of us know per “the rules.”

Another issue: 15-year-old either insinuates herself between sister-and-boyfriend and exchange-student-and-boyfriend when they’re sitting or standing next to each other and possibly holding hands, OR she tries to push the two apart, even smacking the guy around a bit. Gah! I’m just hearing about all this secondhand, mind you; my 17-year-old is the kind and patient soul who is having to experience it firsthand regularly.

The latest: today, the elementary school office called to tell me my 6-year-old told a classmate a couple of days ago that she “has sex after school with her boyfriend.”


I think you can imagine how appalled I was to hear that. First, I don’t think the child has any idea what she’s talking about. Second, we are comfortable with the topic in the right conditions, but this isn’t one of them. I then found out that the youngest said she’d heard it from her sister. That would be the 15-year-old. All I can guess at this point is that she’s heard kids at school talk about the topic in some fashion, because high school students do talk. She somehow then shared that topic with the youngest, and the recipe for an embarrassing and frustrating incident was created.

We’ll be having a chat with the 15-year-old and 6-year-old to talk again about what’s appropriate to say in public. The youngest was told this briefly by the lady at school.

Here’s the problem: the 6-year-old probably won’t talk about that again. But the older one will. With all of the above incidents, we have said OVER AND OVER and OVER … AND OVER … and over… you get the idea… “Don’t say ________ around other people.” Or “don’t touch other people. Hug and kiss your family and maybe hug some people, but DON’T TOUCH THEIR BODY PARTS.” Or “don’t bother Sister and Exchange Student while they’re sitting/standing with their boyfriends.” It’s not that we’ve avoided the topics or just said these things a few times. We must mention them several times a week.

I just don’t know if it’ll ever sink in.

Nope, these are the things we don’t read about in the sweet, inspirational blog posts or the news stories about a girl with Down syndrome being crowned prom queen or the boy with Down’s being allowed to make a touchdown in the football game. Those moments are ones their parents will cherish forever, I am sure. But the thousand, million, other moments of real life are likely much like the ones I’ve just chronicled.

Parenting is tough. It’s rewarding. And parenting a child with a disability is even tougher and sometimes even more rewarding. I think I’ve mentioned before that it’s getting more interesting and challenging the older my daughter gets. I guess we’ll see just how much more so, but I’m hoping the teen years will be the trickiest. We’ll just have to wait and see.

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JunieBJust read that author Barbara Park, best known for all her hilarious Junie B. Jones books, died on Friday. So I just have to write a quick thank you to her for the laughs she’s provided me over the years, since I first discovered her books with my oldest daughter, who’s now 17. “My goose is cooked” still rings in my ears, and the hilarious dog-shearing scene from Junie B. Jones Is a Beauty-Shop Guy is just one of the memories I have of laughing out loud while reading out loud to two of my girls.

I was just talking to my first-grader’s teacher for our parent-teacher conference on Friday about some book options for this youngest daughter and remarking that for her, Junie B. might not be the best idea: it might give her too many ideas, whereas I never thought that about the others…. We’ll see. Regardless, I love Junie B. Her antics crack me up. I’m sure Park will be making people laugh in the next life now.

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I was just reading an AP story that says “doctors are being told to get serious about their patients’ obesity.” I couldn’t help but have a visceral reaction: anger, frustration, fear. I hate going to see my doctor as it is because I feel she just doesn’t “get” how difficult it can be to shed weight, that there is a huge, complex, emotional component. (Yes, I do need to find someone new but I haven’t gotten that done yet.)

I never posted this picture after a special event this summer because I was so embarrassed about how  I looked.

I never posted this picture after a special event this summer because I was so embarrassed about how I looked.

I am right now back up to pretty much my heaviest, and I hate it. It makes me depressed, frustrated with myself, and embarrassed. I feel like I should have better “self-control.” But I don’t right now. I just eat whatever and am having a tough time saying no to anything, even when I’m full. The stress levels in my life are uber-high right now, and I am ridiculously busy and definitely overburdened and overscheduled. So I’m right back to my food addiction. And it makes me feel horrible about myself.

So hearing that doctors need to do “better” about talking to patients about obesity fills me with horror and dread. The only bright spot in the article was that they are supposedly trying to do better about providing real help and support and resources to those who need to lose weight. Because shaming and pointing out the obvious sure as heck aren’t gonna do it. One woman quoted in the article was told by her doctor that she just needed to eat less. Her reaction was the same as mine and everyone else’s out there who eats because of stress and emotions, rather than just to satiate hunger: “It just devastated me,” LeBlanc recalled. “He was saying, ‘It’s all in your mind.’ I was thinking, ‘If I could do that, don’t you think I would have done it by now?'” Uh, yeah. So she switched doctors and has been in a program that includes counseling and has lost 40 pounds.

In my current state of mind (stressed, crazy-busy, and depressed about my weight), I will just smack any doctor or other person who tells me some simplistic and completely insensitive answer that indicates they have no idea what it’s like to walk in my shoes.

I want to know that a doctor will be understanding and sensitive and provide some useful ideas and resources. For me right now, I’m kind of feeling that it will be impossible to lose weight until my life quiets down a bit (senior daughter graduates and is done with band and everything else, for one). It takes serious work, focus, and time to overcome something like this, so it’s not something I can do casually.

Even so, I still exercise because I enjoy it and feel better when I do. It’s a longtime habit and at least I can tell myself that it’s something. I’m not eating like crazy AND being a couch potato. I’m also making myself an appointment with a hypnotherapist. Yes, that’s right. Hey, I figure it’s worth a try.

If you sympathize, please comment. If not, please do not post any “advice.” You don’t want me biting your head off.

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I was thinking again about what a stark contrast there is between the kind of lives my kids and those of their generation lead and the childhood I experienced. I can’t help but lament the huge influence of electronics and other gadgets of today.

Here I am with my sister just watching the cows near our house in eastern Pennsylvania.

Here I am with my sister just watching the cows near our house in eastern Pennsylvania.

I have fond memories of spending lots of time outdoors. Let me make clear that I am not an “outdoorsy” type now and kind of wasn’t even then. I don’t really enjoy camping, I don’t hike, don’t fish, don’t go on trips out to natural wonders; rather, I really enjoy visiting cities with interesting historical sites, museums, and lots of other cultural wonders; I read, I spend time learning things online, editing, writing, etc. I guess it sounds odd I would then be nostalgic about my outdoorsy childhood. But I am. I’m pretty sure my mom forced me out the door when I was a kid, so I would get some fresh air, take a break from reading, and get out of her hair for a while. But I think back on all the beautiful country that lay around the old houses we lived in in various parts of Pennsylvania and just savor those memories. I made mud pies, incorporating wild little onions and carrots and the moist dirt that lay right along the burbling streams. In the winter, my siblings and I built great igloos and forts out of the snow that was so abundant.

Did I watch TV very much? Nah. Do I have fond memories of sitting around the TV set with my family? Not much. I do have some fond memories of going to see classic films with my dad and sister and brother. We watched “Oliver” and “Fantasia.” When teaching his occasional film class, Dad would bring us in to introduce us to Zeffirelli’s “Romeo and Juliet” and even “Battleship Potemkin.” “Citizen Kane” was on the menu. But day-in, day-out, we didn’t have the option of watching videos in our living room. There were 13 channel options on the TV knob, and not all corresponded to an actual station (half were just static).

I love the scent of lilacs today because we had an amazing lilac bush outside a side door of one house, which had a kind of hollowed-out middle I could crawl into and think while smelling that intoxicating floral scent. While I don’t take the time today to find places to walk in nature, I did enjoy just setting out through woods and trails and seeing what I’d find, thinking about whatever while doing so.

Today, my kids and others have instant entertainment in the forms of hundreds of options of (mostly dreck) on TV; they have DVDs galore; there are computers with the Internet, Facebook, Google, YouTube, what have you; smartphones to access that same fun (and often the same level of dreck) stuff whenever they’re not sitting at a desktop computer, and so on. Even though I try to limit the amount of time they spend in front of any screen, just being entertained, I do lament that they aren’t forced as much to just entertain themselves. (Part of my sadness here is that my husband and I always lived “in town,” as opposed to the old houses out seemingly in the middle of nowhere my parents had us live. I admit I have caved to the convenience of having shopping, school, work, etc. easily and quickly accessible. Plus, my husband is a city boy.)

Yep, so here I am being one of those “old codgers” who talks about the good ol’ days and being sad about what’s happening with the young folk. Most of the time, I just do what I can to make my kids entertain themselves (they do love to read and we have a TON of books around, and we have plenty of paint, crayons, paper, etc. and other raw materials for play/learning) and keep them off the computer or away from the TV. But there are moments I wish they could have enjoyed the “simpler time” I had. Guess I’m just turning into my parents here. It’s bound to happen to all of us eventually.

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When the “Marriage Isn’t for You” blog post by Seth Adam Smith started appearing on friends’ Facebook feeds the last week or so, I didn’t really read it, just took a quick look. It just seemed so simplistic and obvious that I thought it was kind of silly people were making a big deal out of it. Yes, marriage is about selflessness. It doesn’t work too well when two people are selfish. OK.

I suppose I’m still a little flabbergasted by how big it’s gotten. I mean, 24 million views (as of two days ago)? That’s ridiculous.

Here I am with my husband. He's often more self-sacrificing than I am, but we've taught each other.

Here I am with my husband. He’s often more self-sacrificing than I am, but we’ve taught each other.

I think what the success of this post tells us is that people in our society have lots of differing views of marriage, in addition to just wanting to clarify a couple of things in this simple post. One point is this: the post was written by a man, and as one woman wrote on Bustle, that’s kind of why it’s gotten so much attention. Women generally have been expected to be the ones to sacrifice, to give all of themselves, for their spouses and families. Men have been asked to provide. So for a man to say he needs to remember to be self-sacrificing is news (as goes the old journalism trope: it’s not news if a dog bites a man; it is news if a man bites a dog).

Another big point people are wanting to make is to clarify that we can’t do well in marriage if we ONLY focus on our spouse; we still have to do what’s important for our own well-beings. I don’t think that Smith meant to say that we shouldn’t be whole, mostly mentally sound people on our own or that we shouldn’t continue to make ourselves the best we can be as individuals; he just was making the point that in our society today, too many of us probably worry too much about ourselves without taking sufficient care to be selfless. This brings up a point I’ve thought about frequently after reading it in a book years ago: when someone is given advice, it’s tailored specifically for them and what they lack and could be totally wrong for someone else.

As an example, my parents never needed to lecture me about being more responsible. I was so overly responsible and focused on planning for the future that they had to encourage me to relax and have some fun in the moment. When I went to prom, they stood at the door and admonished, “Do NOT come home before midnight!” Now this would have been the opposite of what they would have done for my sister, who was more of a have-fun-in-the-moment kind of gal. She was better (and still is, I think) at carpe diem-ing. She’s been a good example to me in that way.

So what I am saying is that this young man needed to hear the advice his dad told him to stop with the anxiety about whether his upcoming marriage would be right for him and to consider more how he could give to his future wife. That’s what he needed to hear and it made such an impact on him that he felt the need to share it on his blog. And there are rightly going to be plenty of people who read his blog who are like him and will need that reminder; others will not need it for themselves because they are already very self-sacrificing. Those readers need a different, almost opposite, reminder that they should take time to make themselves more well-rounded, more complete, etc. And those people (or those who know and love them, it seems), who may very well be primarily female, are those who responded so strongly that Smith shouldn’t forget that point of view.

At the same time, I suppose I shouldn’t have been surprised to read from other bloggers that marriage isn’t about family and children. One guy writing for SFGate.com said this: “Many people enter marriages without a desire to procreate and this just doesn’t hold water for the ever-growing numbers of childless by choice couples.” I can only say that I essentially consider this to be just plain sad. I am still of the belief that marriage really is about creating families, about having children and rearing them to be great people and contributing members of society. (I won’t even get into the problems that this attitude is having on society, just one of which is that countries with low birthrates are now facing serious issues with there being too many elderly and not enough young people.) Yes, I do believe that a very few people really are not cut out to be parents, it seems, but far more who choose never to have children thinking that they fall into this category very likely would be the ones shocked to find themselves enjoying, appreciating, and learning from the experience of parenthood. Through parenting, we contribute to society and we grow as people through both the challenges and the joys we experience. I am one of those who really does consider those who choose deliberately never to have children to be a bit too selfish.

So marriage is for all of us. It’s for husbands and wives, it’s for children, it’s for society. Each of us can stand to do a little better to be selfless and help others; some of us can do a little better in developing ourselves as individuals.

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A few nights ago, I was blessed with the opportunity to meet a man who must absolutely wear his life out in service to others. I was sitting at a high school football game selling cookies to raise money for the marching band, and the other parent I was working with said hello to this particular individual, who was at the game volunteering with the police department as a security presence for these kinds of community events. Mr. B, as I’ll refer to him, stayed to talk a while and spoke of the things he’s been doing; he retired from being an elementary-school teacher a few years ago. In addition to helping out with the police, he and another man help repair bicycles for the homeless once a week; he has spent a month in China during the summer of each of the past few years teaching practical English to young people; he regularly does mission trips with his church to Central America with his wife; he helps in other ways to aid the poor and homeless. I was absolutely blown away by his dedication to doing good. In addition to that, Mr. B’s late brother’s wife runs a foundation dedicated to raising awareness about traumatic brain injuries, and he’s involved in that in some way too.

In this time when we are at odds politically about how much we feel government should be involved in people’s lives, in providing for very basic needs (food, shelter) and slightly-less-basic needs (like health care and education), it still strikes me how very important it is for all of us to give of ourselves to our communities and the world at large. If every person volunteered their time just a little every week, according as their schedules and particular obligations allowed, think about what good would happen. Without any government outlays of tax dollars or resources, so many people would be helped. Even those who are the ones more “in need” can often do something to give back, even if it’s just making a few phone calls or coordinating others’ efforts.

Very likely, we would have far less need of government to take care of so many people. And think about the benefits to each person who is volunteering: an improved work ethic for themselves and those they care for; more compassion and empathy for those who are in more need or experience different kinds of struggles; an appreciation for how we are all connected and how what each of us does affects so many others.

I have written about how so often when I see so much need that I wish I could do more, but I have to remind myself that just helping one person (throwing back that one starfish…) is something. But if each of us did a little more, … wow. So many starfish would be back in the sea, alive and well and thriving.

This is a fun little way to remember to give the best gift you can give.

This is a fun little way to remember to give the best gift you can give.

At this season when we start thinking about giving thanks and giving gifts, perhaps one great gift we could give is to find a little something extra we can do for our fellow men, right in our own communities, and then sustain it past this season, right into the coming year and years. Our efforts, even if they’re small, do make a difference.

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