Have label, will travel

Recently I received an e-mail from one of the autism listservs I am on. Included in the body of the message was a template for a business card that parents could make and give out as necessary. The template said:

This child is autistic.
 
     Autistic children may experience difficulty in certain situations that may cause them to exhibit undesirable behaviors.  These outbursts often happen for no apparent reason and may be due to the child's inability to tolerate the present environment.  The occurrence of these tantrums is a symptom of this condition and is not due to a lack of appropriate parenting skills.

I have heard of this sort of thing before. One person even said they had a t-shirt made up saying something similar and had their child wear it when they suspected their child might be hard to handle that day. I am torn over this. Though I totally understand the wish to educate others about autism and it' effects, and I while I freely identify Q as being diagnosed as on the spectrum, I'm not sure I would advertise him in this way. I know about feeling as though other people are questioning my parenting skills, and even having others question them to my face, but I'm not sure I should acknowledge that others have the right to do so. What if it was my daughter's behavior? I have no "excuse" for her when she throws herself on the floor in the grocery store.

And how will your child feel one day when he or she looks at a picture of finds a card and realizes her parents were so ashamed of him or her that they had to label them (on their shirt no less!)?Yes, our children have special needs, they have undesirable and uncontrollable behavior at times, and yes most of the time they look like totally normal kids so people misjudge the situation. There have been times when I have explained Q's issues to those around us when needed, even strangers. But somehow that seems a bit different than printing out a card or putting it on a shirt. Maybe I am making a false distinction.

But the above statement seems to rule out that we could have pride or a sense of accomplishment in our children. They make it seem like autism is a death sentence, something I am not willing to accept. And yet the man who sent this statement is one the biggest advocates for autism in my area. He sends out tons of information every week or so and I have learned so much from his e-mails.

How do we deal with the fact that people hate difference? That the minute anyone deviates from what we consider "normal", society shies away and either makes fun of it or tries to deny it exists. We try to excuse the difference. Or we label it. See, don't be upset that we're different - it's all because we're autistic. No one ever seems to say we're great because we're autistic. We're able to see the world in a different way because we're autistic. We are the great thinkers and artists. We are the musicians and professors. No one hands out a card like that very often. I know that life is harder for me and mine because of autism and I am ready and willing to explain that to anyone who needs to know. But I don't ever want my son to feel that I made excuses for him, that I somehow explained the whole of who he is by saying he is autistic.

Oh how I wish for a world where people looked on one another with love, instead of with criticism, where we tried to understand, rather than needing an excuse or explanation, where we appreciate difference, rather than trying to fit everyone inside our neat little boxes. I know that these cards and other statements similar to this are ways for parents and autistic children and adults to survive in this crazy world. I just wish we didn't need them.

Family frustration

My grandmother is visiting from NY this week. I was up there this weekend for a bridal shower and since my mother apparently thinks I am unable to drive from DC to NY by myself, my grandmother had to accompany me. While she is here she will help me redecorate the church classroom where I teach Sunday School. She also is a decent cook, which given that means I basically don't have to cook for a few nights, always a good thing. And she plays with the kids a little. C loves her. I think my mom is jealous. I am torn between being thankful for Gram's help and being frustrated by her inability to deal with Q.

My grandmother has been a fixture in my life since the day I was born. My mom was young and my dad was worthless so my grandparents were around a lot. There were many times when my mom felt more like my sister. I think this bothered my mom but since she had few options, she made do. I was my grandparents favorite. The apple of their eye. This meant they paid me a ton of attention. It also meant they had definite expectations for me. Those expectations have often been difficult to live up to. Ten years ago my grandfather died and we weren't really sure if Gram would make it. DH and I lived in the other half of her house for two years and then around the corner from her for another two before we moved to DC. She is in fairly good condition for her age and she loves to come help and spend time with the kids. I try to keep in mind that she has a limited time to spend with them and give her opportunities to see them when possible.

My family has always been a girl oriented family. Girls were prized and praised. Boys were hyper and difficult. This is boiling it down but it gets at the attitudes I often see on display. When Q was born he was the first grandchild. Surprisingly my mom took to him right away. He was and remains her favorite. I suspect when C gets bigger that won't be quite the same, but for right now Q and my mom click to some extent. When C was born Gram found her favorite and C loves her right back. But Gram has no idea what to do with Q.

Most of my family is torn when it comes to Q. They know he has special needs and they acknowledge that, until he actually has a problem and then they think he is spoiled and I just am not strict enough with him. I don't think they believe that all his issues would go away if I was stricter, but certainly many of them would. My aunt, a speech pathologist gives me lots of advice, some is good, some I don't like at all. My mom gives advice too but makes allowances to some extent. Gram just doesn't know how to approach him at all.

That approach I take when dealing with Q is a combination of my own parenting ideas, careful watching and copying things I see his therapists do, things I've read, and ideas from other special needs parents. Watching and imitating his therapists has been very helpful. But for some reason, my family hasn't learned that if they watch me and do as I do, it will be far easier for everyone. Gram pretends he is the same as C. Despite my reminders to get his attention a certain way, or give him direct easy to follow directions, she never does what I suggest. Today I had to remind her for the umpteenth time not to threaten them with her leaving. A typical reprimand from her - "If you don't do X then I'm going home!" I've tried to get across that they may not care, and even worse they'll fairly soon come to see that she doesn't leave and the threat will become useless. It's like hitting my head on the wall.

What seems to bother her most is Q's screaming. Pretty much every thing you ask him to do is followed by him screaming no. I ignore it for the most part. Sometimes it gets to me and I lose patience, but mostly I say, "Well, I'm sorry but that's what we're doing," or "No screaming, use your words to tell me what is the problem." Gram in contrast tries to get him to put his hand on his mouth, or shush him. This defeats my purpose of trying to get him to use his words to tell me why doing X is such a problem. He has to get out his frustration somehow and since it's better than him hitting me or his sister, I don't think it's the worst thing in the world.

Gram just doesn't get it, try though I might to explain it to her. And yet I know she loves them both. It can sometimes be very frustrating. I often wished my family lived closer to give them more time with the kids and to give me a break once in awhile. But I also know that such closeness would probably drive me nuts. It's hard enough being a parent, let alone a parent of a special needs kid, without everyone always disregarding your ideas and questioning your parenting.

Shifting traffic

One of the ways the authorities attempt to deal with the overwhelming traffic here in DC is to change the direction of various roads during rush hour. On my way home from work today I watched as DC Police worked on making Rock Creek Parkway a one way street to accommodate rush hour traffic. There seemed to be an army of them closing off various roads and redirecting traffic. It seems rather dangerous at times to not exactly know when the changeover has happened. Can I use that lane yet? Will there be traffic coming the other way still or is it all clear? After the switch on Rock Creek Pkwy it really can get confusing as you actually use the "wrong" side of the road. On a major roadway by my house, a six lane major avenue, the traffic switches from 3 lanes each way during the day to 4 and 2 lanes each way during rush. I've often seen people using the middle lane as a turn lane only to get into big trouble when the traffic rushes at them from the opposite way. It can be very confusing. On the other hand, it is a huge help to the traffic around here which is unbearable (and I say that as a former New Yorker).

It occurred to me today that life is sometimes like that shifting traffic. One day things seem to be going a certain way, but then it shifts and the roads you thought you knew no longer ran the same way and if you stay too long in one lane trying to figure it out, you get smashed. That was kind of how it was when I got his job in June. My life was going along fine when the lanes suddenly changed and all I thought I knew about what I wanted for my life shifted. Now I am trying to think about next year when I plan to attend seminary part time while still working. I need to keep working both to keep learning about life as church staff and for the money. Daycare costs way too much. Only I couldn't wrap my mind around how I could go to school and work while only having C in daycare three days a week. Why three? Because she's three years old and I always thought of age as a good indicator of how many days a week a child should be in preschool. And to be honest I also still think of myself as a stay at home mom. Sure I work part time, but I'm still home a lot.

When DH and I were discussing this the other day suddenly the traffic shifted and it became clear that what we really needed to do was put C in school full time. This is a big jump for me. It is not something I ever wanted to do, but if I am to get through school, then I must have the time to do the work. If C is home this will not happen. Q will be in all day Kindergarten so that is not an issue for us. When I finish school I still intend to get a part time position so I can be home part time. But for right now being a part time worker and part time student means I need full time childcare. This decision has made me rethink other things and I am looking into whether I can change the present day care arrangement from two days a week to three days a week. It is just too difficult to try to juggle everything with only two child free days.

Now that the traffic has shifted the way looks fairly clear but I am on the lookout for oncoming cars.

A Presidential Marriage

I'm watching my new favorite show, Commander-in-Chief, and I just have to say that I love the relationship between Gina Davis' character Mackenzie Allen and her husband, Rod. It is rare on TV to see a couple that respects each other, obviously helps each other through things in life. and stays married through it all. The drama always seems to be in having them betray each other or lie to each other. Marriage just isn't portrayed as sexy or interesting for the most part, especially in TV dramas. I'm a big believer in role models, that what we see, what we're shown over and over again, shapes what we think, how we act, who we become. Watching a couple who portrays a strong, passionate, loving marriage, who fight, make love, and have deep discussions, may just lead some people to rethink their idea of marriage. Or maybe they'll just wish they look more like Gina Davis. I certainly do!

By any other name

I warned that there would be changes to this blog and now there have been some major ones. I am no longer a housewife anymore. And I no longer am confused over who I am or where I am going. So the the old title "A Housewife's Dilemma" really didn't fit. I have renamed this blog "Ministering Mama" because that's what I do, I minister. I minister both to my family and to the children and adults at my church. I try to minister to myself but mostly I stink at that.

I have also changed my name on the blog. I never really liked ModernHouseMamaX2. Too long. So I am going back to the name I have used to identify myself for over 10 years on the web, Bellarour. It is a combination of my cats' names - Arabella and Aurora. I'm sorry if this all causes confusion and I hope it doesn't turn off anyone who would be interested in reading. But I feel strongly that if you make major changes in your life, those changes must evident and important if they are to make any impact at all.

The url for this site will remain the same. This has been my own piece of real estate in cyberworld and I am reluctant to give that up. So the address will be the same and my content will be similar, but the name and perhaps some of the questions I ask and hope to answer will be different. I hope you stay around to read the next chapter of the story.

Normal life?

Apparently there is a new book about autism that I need to read. This afternoon I was reading an excerpt from Making Peace with Autism: One Family's Story of Struggle, Discovery, and Unexpected Gifts by Susan Senator, and it felt so true to my experiences that tears came my eyes. She writes,

We as a family are frequently hamstrung by Nat's unpredictability, our plans held hostage by autism. We can never simply go to a concert, a movie, a friend's party without first wondering, “Can Nat handle it?” Despite intensive schooling and our Herculean efforts, he still has tantrums, and even when he doesn't, he can be just plain unpleasant, unhappy, or embarrassing in public.

This certainly isn't what Ned and I expected when we began our life together. Having Nat has tested our marriage, forcing us to stick together even when we have been tempted to run. Ned has had to adjust his career; he has chosen to be a family man rather than a company man. He says he's never looked back, and I believe him.

Sometimes, though, I wonder what life would have been like if Nat had been normal. I try not to get to that question, but inevitably it comes up. I look back, I look forward, and sometimes all I see are sad and scary realities. But still I look, because that is how I learn, and how I get through a day. By looking at it all honestly, I come to understand how we function as a family, what has worked for us and what hasn't, and, maybe, I can get a sense of what might be coming next.

Like the author I sometimes feel like autism holds us hostage. I always have to wonder if we're asking too much of Q, if he can handle what we're planning. Many times we take him out hoping to broaden his experiences and have some fun ourselves, but spend most of the time dealing with his constant refrain of "I want to go home." Home is Q's safe space. I think he'd almost rather be home then anywhere else. When you change his routine or require him to do something he doesn't want to do (from something as simple as going to the bathroom to the more involved like getting ready to go to school) the screaming starts. "NOOOOOO!!!!" he says over and over. "I don't want to!!!!!" is one of his favorite things to say. It gets annoying and difficult to constantly pull him through his day trying to get him to focus on the world outside himself. I struggle with trying to engage him while giving him some down time. And I also struggle with trying to get him to do things for himself. Since getting him out of the house is a major fight in itself I often don't push him to put on his own shoes or put on his jacket. I do it for him because it is easier for me. I only have so much patience. In the back of my mind though I know I am not helping. Q will have to learn to stand on his own one day. Unlike many children who strive to do things themselves (C hardly lets me do anything for her.) Q is happy to not worry about these things.

DH is not someone who could leave his "company" to become a family man. His vocation of teaching is his life. Sometimes I struggle with that since that means that I often have to be the one to deal with Q and manage his therapies and deal with him daily. I am jealous of DH because he gets to opt out and I don't. I thought working might help and it does to some extent, but though I do get a day or two to focus on something else, it just seems like I have added to what I already had to do. But that is who DH is and to be honest I understand wanting to escape into work. I just wish I could do it too sometimes.

I don't often think of what Q would be like without autism. It seems impossible to separate the two. Autism shapes the very core of who Q is, what he cares about, how he approaches things. I can't even imagine who he would be without it. I do wonder what things would be like if some of the more negative aspects of autism could be reduced. What if he could make transitions easier? If speech came easier to him and auditory processing didn't take him so long? What if he could pretend play without needing a script to follow? He could still be intense and obsessive. He could still love to jump and crave big hugs. But what if life could be easier for him and as a result, for all of us? I guess I hope one day that's what it will be like. Q will still be Q but it will get easier for him to deal with life and he will learn how to cope.

Sometimes I wonder what Q will think if he ever reads these entries. Will he think I didn't love him as he is? Will he feel guilty or angry? I hope he understands that we always loved him and wanted the best for him. It was hard for us yes, but it was hard for him too. It's no fun to not know what is going on around you, or how to answer questions being asked of you. It's hard to not know how to regulate your body or control your impulses. As difficult as it is for me to sometimes deal with his behavior, I know it is more difficult for Q to just go about daily life. I hope Q knows that he has taught me incredible lessons and I am a much better mom because of him. I went through so much to have my beautiful son and no matter what has happened or will ever happen, I would do it all again in a heartbeat. Who wants a "normal" life anyway?

Good news, bad news

Good news:
1. DH fixed Haloscan comments.
2. Had great family time with kids and DH tonight.
3. Found several good books to help with my talk about children's spirituality in a few weeks for which I am presently totally unprepared.
4. Tonight I get to watch Commander-in-Chief before going to bed early tonight. Oh yeah, I get to go to bed early because of the bad news....

Bad News:
1. Yankees lost to the Angels. (Randy Johnson is so not worth the money.)
2. The curriculum I bought for Sunday School this year is far surpassed by the curriculum I should have bought and would have bought if I had known what I was doing at the time I ordered it. Welcome to a new job in a new place that you are fairly unprepared for.
3. Since baseball is over for me now (I vote for a Houston - White Sox world series please.) the summer is officially over which was also seconded by the drop in temperature here. If summer is over that means the worst of all possible things - that means Christmas is looming on the horizon just waiting to strike. ARRRRGGGHHH!

Technical Difficulties

In case you hadn't noticed I'm having problems with getting haloscan commenting to work on this new template. I told you I suck at this stuff. Anyway, will have DH computer whiz work on it tonight.

Discuss amongst yourselves

This week's question:
Why do so many people hate the Yankees? Why do people consider them evil?

Is it jealousy? The payroll? An unfair advantage? Arrogance?

I don't get the hate but then I am a fan. So can someone please explain it to me?

Talent hog

Somewhere in the world there are at least 100 (maybe even more) people walking around with absolutely no talent for anything. They can probably do things in a fairly average way but they can never be great at anything. The reason for this is very simple. All of their talent went to one man - Joss Whedon.

Many years ago DH and I started watching a little show called Buffy the Vampire Slayer. This was truly the best tv show I have ever seen. It was smart. It was witty. It had amazing female characters. It said something about the world. Clearly it showed off creator Joss Whedon's genius. (I'm sorry to say that, for me, Angel never really lived up to it's promise which just goes to show that you should never do too many things at once, even if you are a talent hog.) I could go on and on about how Buffy was a superior show, but that's not my point here.

Towards the end of Buffy's run, Joss decided to create another show (way over committed) and Firefly was born. Firefly was a sci-fi western that defied categorization. (An immediate reason for why it never did that well ratings wise.) It too was brilliant. It was fun. I loved it. But Fox screwed it up (no surprise there) and showed it out of sequence and without a lot of publicity. So Firefly was canceled and our hearts were broken. That is, they were until last week when Joss's genius was on display again in the movie Serenity, based on the Firefly series.

I can only say go see this movie. Whether you are a Joss fan or not, even if you've never seen Firefly, you owe it to yourself to see why maybe you are one of those unfortunate people without talent because Joss Whedon stole it all. Unlike many movies that spawn from tv shows, Serenity is not just an expanded episode. It is it's own stand alone movie. The dialogue is amazing, the story is engaging, and the message is one we desperately need to hear more of. Nathan Fillion isn't too bad on the eyes either. All in all, a very good use of babysitter time.

Oh Joss, I know you have too much talent, but even if I am lacking something special because you are a talent hog, I must admit it's been worth it. I look forward to your next creation.

And by the way, this was not why I voted for a Kerry/Edwards ticket in 2004, but only because I didn't know about it.

Start of something

Changes have been made. Didn't quite mean to do it so soon, but I really suck at web editing, so the changes kind of happened faster than anticipated. Damn you efficient computer!

The times they are a changin'

When I started this blog I was staying home full time with my kids and trying to figure out what they meant for me and my future. It was a way for me to think through what it meant to stay at home and how that had changed my life. Oh how things change.

Totally unexpectedly, and maybe because I've been thinking about it and blogging about it, I've gone from being a full time housewife to working part time and planning to attend seminary next year at least part time. Now I have even more questions about how you juggle all this and how you stay sane and keep your kids sane while running around trying to do too many jobs at once. But one thing is clear, I am no longer struggling about what it means to be a housewife. So I wonder what that means for this blog.

I guess if I had thought about it I would have tried to not define this all so narrowly but that was where I was then. It just isn't where I am now and it seems like somehow this blog needs to change to reflect that. I'm not sure what that means but just in case you come here some time soon and go - WHAT THE HELL??!! I thought I should explain.

In case nothing changes, you know I am either too damn busy to deal with it or I have no idea what I'm doing when it comes to computers. Only time will tell.

Big Decisions

Today DH and I made some very big decisions about our lives for the next five years or so. For awhile now we've been deliberating moving from the Washington DC area. There are two major reasons for this. For one DH isn't always thrilled with his job and we've discussed whether he needs a change of universities. And then there is the cost of living around here. Recently there was a Washington Post article about how much you have to make to just survive in this town. We barely made the cut. So much education just to live at a subsistence level.

So for the past several months we have debated whether or not a move to another area might be a way to fix these two issues. It has not been an easy decision. I am a New Yorker and will always be a New Yorker, but Washington has started to become my home. I have lived here for over 5 years and while I spent the first two years wishing I could be back in NY with familiar places and some family support, I have now outgrown that. Instead I have put down roots here. I have several friends who live nearby and over time I have created quite a mommy network. Our best friends even live 10 minutes away when they're not off on a fellowship somewhere. I have basically created my own family here. And over time we have also created a therapy network for Q.

Though my suburban town is far from small, if I go downtown I am bound to run into someone I know. It's actually scary to me how often this happens. I know the area now. I know how to get places and what roads to avoid on the way. There is so much to do and so many things to see here. My kids totally love the museums, monuments, and of course the zoo. And the best part - we live about a half hour away from all of them. Then there is the seminary I plan to attend starting next year, also a half hour away. We also live within walking distance of a well regarded elementary school and within a 10 minute drive of several great playgrounds and parks.

Of course it isn't paradise here. I wouldn't mind missing the traffic or the mosquitos and humidity. It would also be nice to afford things now and then. The Washington mindset can drive you crazy and of course there is the persistent terror threat. I guess there are trade offs to any place you live.

But finally about a few weeks ago, without, it seemed, any definite decision, DH and I settled in to the idea that we are staying right where we are. I won't lie and say having a baseball team here hasn't had some influence in that. I never said we were rational. There are some problems we need to address with work and money yes, but I think right now this is where we want to be.

In the last week DH and I have debated a new question - Should we move to Northern VA to be closer to the church and therefore my work? Right now my commute is anywhere from 45 minutes to an hour depending on traffic. In this move we would hope to make some money and move to a townhouse to simplify our outside maintenance. But it would probably mean a longer commute for DH and it would certainly mean starting all over with a new area. It is still Washington Metro yes, but many of our community ties to suburban Maryland would be lost.

We spent most of this rainy afternoon debating this. Q was running around spouting about letters and C was building blocks at our feet while we talked about all we liked and disliked about where we are. It was truly a turning point for us as it became clear that the earlier non-decision we had made about staying in the area was actually one we were both comfortable with. Over time I think we've come to see that this is truly our home, both the area and our specific house. We just don't want to move.

This is huge for us. This January we will have lived in our house for three years, the longest we have ever lived in one building since we have been married. This house, with all it's oddities and needs, and this area, with all it's insanity and beauty, is home. And it feels really good to stop debating it. For a change the future seemed clear. Now if we could just get our best friends to come home and stay, I'd be thrilled. Baby Lyra, C really misses you.

Baseball indigestion and monkey murder

People it is playoff time and I am not sure whether I like that or not. At playoff time I get indigestion. What is it about sports teams that gets you so hooked into them, makes them such a part of your world? I distinctly remember when the Yankees lost to the f****ing Red Sox last year in the American League Championship Series. I was depressed for about a week afterwards. I kept thinking why does this effect me so. But it was there none the less.

So this year I am holding my breath while I watch my beloved Yanks take on the Angels (stupidly called now the Los Angeles Angels of Anaheim). I remember the Yanks lost to the Angels a couple of years ago. Mostly I remember that stupid rally monkey. I hated that damn monkey. No, really. And I usually love monkeys.

Nevertheless, I am on pins and needles waiting to see what will happen. I think that is what I love about baseball. You don't know what will happen next. There isn't any obvious end to the story. It won't follow a formula per se. Of course good players are better than bad, good pitching always beats good hitting, and statistics for batting with runners in scoring position mean nothing. But in the end I had no idea the Yankees would lose last year and though I think I can predict this year's World Series teams, I don't really know what will happen.

I only know that I will be watching and waiting with lots of Tums to help my indigestion. And soon we will know who will be happy this off season while the rest of us are miserably waiting for Spring Training. In my head there is a post rolling around about my other beloved team, The Washington Nationals, who are already waiting for the Spring. For those of you who don't have this baseball bug, I feel for you. I spent much of my life that way, and believe me it is way better on this side of the fence. Now get me a gag for that damn monkey and hand me my Tums. Go Yanks!!!!

My daughter, My self

I grew up the oddball in my family in a variety of ways. But probably the most visible of ways was my coloring. I lived with my Irish/German mother, not my Puerto Rican father. I was the brown one in a sea of fair skinned blondes and redheads. I even remember asking my grandmother why I was brown while they all weren't. She replied that I was olive skinned. This was not the answer I wanted to hear. "I am not green," I told her. "I am brown." And as a child was I ever brown. I could tan through my bathing suit and my long black hair and dark brown eyes completed the picture.

As an adult I don't spend that much time in the sun so I am a little lighter than I used to be but I am still pretty brown. The area where I live is very diverse and there are a number of Hispanics living here. People regularly come up to me and start speaking Spanish thinking I will reply. I don't because I suck at languages and don't speak Spanish. But I have gotten used to being one brown person among many. I see young Hispanic girls with long brown hair, dark eyes, and brown skin and I see myself.

I guess I always thought my daughter would look just like that, just like me. More fool me. C is light skinned with blonde hair and light brown eyes that border on hazel from time to time. Where I have thick wavy hair, she has thin straight hair. Instead it is Q who looks like me, with easily tanned skin, dark hair and dark eyes. People like to say that C has my face. Or that she must take after DH. Only DH has lighter skin but also dark brown hair and eyes, like me. C is, for sure, a throwback to that Irish/German part of my family.

Sometimes I look at those little Hispanic girls and they almost seem like a child I thought I would have, but lost. We all picture what we think our children will look like or be like as they grow up. In my research on autism there is often a call to grieve for the child you expected so you can embrace the child you have. But I think that is bigger than just for autism or a disability. How many of us have been expected to look a certain way or act a certain way by our families? They expect a certain thing, a certain person. Sometimes you can be that, but more often than not, you cannot.

In a way it is very good that C doesn't look like I thought she would. This way maybe I can keep in mind that she is her own person, and not just my projection of my daughter. I hope she can always be proud of how she looks, and who she is. Though I know from my experience that how you looks helps to define who you are. It was always an issue for me to accept my Hispanic features. I wonder what C's issues will be. And maybe one day when she has a brown daughter I can laugh as my mother (with her blonde hair) must laugh when she sees C.