Help

I took Mary to Wegman's this evening, which makes her deliriously happy. She loves riding in the shopping cart, eating her free cookie, and helping me unload the groceries onto the checkout belt. I take her to a lot of places for fun, but nothing beats "Buppy," as she calls it.


As we were leaving, there was a mom with a toddler walking out at the same time. He was screaming and kicking, and I felt sympathy for her. She was pushing her cart quickly, not giving in to him, and I admired her. She was ignoring other people's stares, and not trying to talk him out of his tantrum. Just as I was congratulating her in my mind, she slapped him across the face. This did nothing to diminish his wails. I cringed, but chickened out and didn't say anything.


I didn't want to scold her - I wanted to tell her that I've been there, that I get it. Kids are enormously frustrating. I'm not against spanking, in general. Mary gets a swat on the butt from time to time when she is deliberately disobedient. However, slapping a child in the face crosses the line. I've found that once you can talk with your child, spanking becomes useless. Taking away a privilege, or having an excruciatingly long talk about the misbehavior is a much more effective deterrent once they reach the age of reason. 


I wanted to reach out to that mom because she made me remember a time that I lost control with Mary. She was five months old, and screaming her lungs out while I was rushing to pick Ben up from preschool. It was a trying day, and I had had it. As I was unbuckling her from her car seat, she screamed even louder, and I snapped. I slapped her, which stunned both of us for a moment. Horrified with myself, I picked her up and cuddled her. I was ashamed and bewildered - who does that? I needed help, but I'm terrible at accepting it, and even worse at asking for it.


I had postpartum depression and didn't know it. It wasn't like I was Brooke Shields - I didn't lay in bed for days at a time, and I didn't want to throw the baby out the window. I was tense, on edge. I would blow up at the smallest things, planning my days to the minute and freaking out when I ran behind. I hate the term "depression" for what I had - anxiety was more like it. I kept going and going until I dropped, to the point where I actually weighed less than I had before the pregnancy (and I am not a person who loses weight easily), and I looked haggard. Pictures of me form that time show a zombie, dead behind the eyes.


I'd like to say that I called the doctor that day, but in reality it took me a month. She gave me Lexapro, which I didn't want to take, but I felt like I had no choice. She promised that I wouldn't have to be on it forever, and proposed trying it for six months. It was a miracle. I was calmer, happier, and able to enjoy things again (including food, unfortunately). When the six months was up, Mary had just been diagnosed, so we agreed that it wasn't the best time to stop the medication. I ended up taking it for another year, and then stopped cold turkey. That's not the best way to do it, but it was fine for me. I was ok again - still type-A, but with self-control.


Parents need help, from family, friends, or even pharmaceuticals. I want to tell that mom to take time for herself, get a sitter, put the kid in front of his favorite show. This is advice that I never would have taken myself, I know. Admitting that you can't do everything by yourself is not a sign of weakness. I wish I had learned that sooner.

Clean-Up, Clean-Up

     People who say that they like to clean are liars. Nobody truly enjoys the act of cleaning. It is the time after the job is done, when the air smells of bleach and the floors shine, that people enjoy. Conversely, nobody really likes living in a dirty house, either. People who claim that are just good at ignoring the mess, transcending the clutter. I am of the former persuasion. While I don't dance through the house with my dustrag, I can only truly relax when the house is clean.

     I keep a clean house partly because I like it that way, and partly because I don't want to be embarrassed when someone stops by. I was a typical teenage slob, and my college apartment was disgusting. I had a full course load and waited tables five days a week, and I didn't see the point of cleaning a place that I was rarely in. When I moved in with my husband, I embraced cleaning, and found that it made me happy to keep a nice home. Very 50's housewife, I know, but it gave me satisfaction.

     After kids, the housework got harder to keep up with, but I managed. When Mary began home therapy, it became a huge daily task. Therapists coming over every day, sometimes twice, was a great motivator in keeping everything immaculate. It hurt my pride, a little, that I couldn't do everything for her, that I couldn't teach her the things a mom should. At the very least, I could vacuum the carpets and pick up the blocks, to make their job easier.

     Cleaning was a way to maintain control over my life. If the dishes are done and the toilets are scrubbed, I can relax, knowing that there is nothing more to do. However, I am very much an out-of-sight, out-of-mind person - my basement is like that episode of "Friends," where Chandler finds Monica's closet jammed with crap. I enjoy home-makeover shows on HGTV and Style network, and I think that I've got a great idea for one. "Dirty Little Secrets" would feature homes like mine, which appear in order, except for that one room or nook that holds all of the odds and ends. To any tv execs reading: I volunteer to be featured on the first episode.

     Now that Mary gets all of her therapy at school, I worry less about keeping the house clean. I no longer rotate the toys every two weeks, and it's been way too long since the upstairs was vacuumed. Maybe that's a sign that I'm relaxing more, accepting life for what it is. Then again, this week my son and I spent a full morning shoveling his room out. He was so happy, he actually played in it, instead of dragging his stuff around the rest of the house. I'm making one just like me! You're welcome, Ben's future wife.

What a Good Boy

In the interest of fairness, and to round out my story, this post will be about my 8-year-old son Ben. The parents of disabled children tend to get a lot of sympathy, but the siblings aren't often considered. Ben is shockingly patient and kind to Mary, even as she rejects his affections constantly. He understands when we have to suddenly go home from someplace fun, thanks to Mary's behavior, with more maturity than I have. I'll be sitting in the car, flushed and embarrassed from her outbursts, and irritated with her for ruining yet another dinner out, and Ben will serenely say, "It's OK, we can just get Chinese." 


Ben is a regular almost-third grader, who loves fart jokes and his iPod, recently recovered after a two-hour shovel-out of his bedroom. He forgets to wash his hands, talks back, and prefers Disney XD to reading a book.  A three-sport kid, we spend many hours at practices and games, which Mary hates and protests loudly. I still make her go sometimes, though. I figure that it's the least she can do for him, considering the disruptions she causes in his life.


A study of siblings of disabled children, conducted by PRISMS, concluded that they are more likely to be empathetic, and that they are glad to have their siblings, despite all of the difficulties that go along with them. Ben likes to talk about Mary's future. "When Mary gets older" stories are common topics of discussion in our house. He is hopeful, sure that she'll speak intelligibly, and go with his for ice cream once he gets his license. I've tempered his expectations with a dose of reality, but I don't want to crush his dreams about her.


He mourns, in his own way. His new cousins, both under 2, delight him in a way that Mary doesn't. They interact with him, are happy to see him, and soon will start talking to him. He asks for another sibling, but that's not happening. This factory is closed! But I get it - he wants a sibling to relate to, to play with, who will respond to him with something other than cries of distress and kicks. 


What a good boy, what a smart boy, what a strong boy.

Am I the Only One?

      Mary has been glued to my side for most of her life, with brief dashes over to Daddy. This week has been especially trying - no school plus hot weather equals one cute little girl extending her arms and saying "uppie" all day long.

     Daddy and I did manage to get away for an overnight at a friend's lake house this weekend (thank you, Gaga!), which was a nice break for my sore back and tired arms. As soon as I returned, though, my little shadow clung to me like crazy, and hasn't let go since, unless Yo Gabba Gabba was on. Which it is, in our house. A lot. Way more than that hour per day recommended.

     Even though we've seen lots of family this week, people who Mary loves, she wants only me. When passed to another person, she calmly puts her thumb to her chin and says "Mama," with big eyes and a serious expression. She is not joking around here. And I cave every time, to avoid unpleasantness in the form of a huge tantrum. Maybe I enjoy playing the martyr, or maybe I just want to keep the peace. Typical middle child stuff.

     My husband always tries to take her off my hands, but when we're out of the house, I just take her, to make things easier. Today, at the amusement park, I did hand her off once. I had held her through several cycles in the wave pool, and I just needed to be free for a few minutes. I swam away, she cried, and then she got over it. Out of sight, out of mind.

      Others have told me that when I am not there, Mary is much more willing to engage with them.  Maybe I'm holding her back, or subconsciously enjoying being needed. It is nice to have someone on your life who is always happy to see you, and wants endless hugs and kisses.

     Or maybe I just like the gun show I'm packing, thanks to carrying around a forty pound preschooler.

School's Out for Summer!

      Today, dear Mary graduated from preschool. At least, I think that she did. There were so many camera-happy parents in front of me that I couldn't see a thing. While I get the impulse to take photos, Mary was the last kid on the stage - did all of those people really want a picture of someone else's kid? Maybe. Personally, I lost interest in other people's children when I had my own, but hey, whatever works for you.

      Tiny Mary was in the last seat of the last row of children today. Not the best idea, since she is not a great waiter in general. By the time her name was called, she had removed her robe, thrown a few small hissy fits, and fallen asleep. I imagine that she staggered across the stage, protesting all the way. Again, I have to imagine, as I couldn't see a thing.

     Nobody wants her kid to be last, and I tend to be pretty relaxed about this kind of thing. I'm usually content for Mary to participate however she can, but this time, I was furious. These people know Mary, and know that she gets tired and cranky after sitting around for too long. As do I, by the way. We had to be at her school an hour before the graduation, and sit there waiting for things to get going, so maybe I wasn't in the best frame of mind. The ceremony itself was a little over half an hour, a long time for a four year old to sit still.

      This is a school that celebrates and embraces differences, but they didn't think to make a simple accommodation for Mary. Frankly, if they had put the kids who typically have ants in their pants first, the whole ceremony would have gone more smoothly. As it became apparent that she would be last, and as I watched her gradually losing her cool, I started tearing up. This is, embarrassingly, what I do when I'm really angry. It is so stereotypically female, and one of my worst qualities. Fortunately, today I could pass off my tears as those of a proud momma, which I am.

Fortunately, they took graduation photos last week, when she was in a better mood. Prettiest girl ever!

And no, I have no idea why the first paragraph is double spaced.

Girls Who Like Boys

     My daughter is boy crazy. Let me amend that - she is man crazy. At Ben's last soccer practice, she sat on one dad's lap and tickled his beard, grabbed a second dad from behind and tackled him to the ground, and asked a third dad to pick her up, and hugged him like he was a long-lost friend. The moms, she completely ignores. There is something about men that she just loves, which is cute. For now.


     Believe it or not, she is now showing a little restraint. Less than a year ago, she was marching up to complete strangers and hugging them. She was at an unfortunate height for this, as she was (and still is) crotch-height to most men. These poor guys don't know what to do. They look terrified, as if Chris Williams is going to pop out with his camera crew. The men would typically freeze, afraid to touch her lest I scream "Pervert!" in the middle of the grocery store. Adding to the awkwardness,  I get to detangle Mary from their waists, touching the belts of perfect strangers.


     Her one-to-one aide this year was a man, a rarity. He is wonderful with her, and she adores him. He has a longish goatee which she pulls with glee, and as a result, she now tries to touch the beard of every man she sees. I used this fancy of hers to convince my husband to grow his beard again. He gave it up a few years ago when I convinced him to try a new haircut, after 10 years of the exact same center-parted 90s slacker 'do. All of the female attention he received made him love his new look, which is great, but I miss the beard, like I'm sure he misses my much-smaller ass of our high school days. Sadly, Mary did not care for his beard, and he did not care for the grays that appeared in it, so off it went.


    She's not even five yet - what am I in for? Right now, she is the lone girl in a class of twelve. Since special ed classes tend to be boy-heavy, Mary will have plenty of opportunities for more age-appropriate crushes in the future. Once she discovers boys her own age, you'll find Gary and I at the local hunting store, shopping for shotguns. Kidding, of course!


Sort of.


     

Sing a Song

     So I  have broken the cardinal rule of blogging - one must post frequently. Forgive my absence, dear readers, but I had a deadline to meet, for the writing I do that actually pays something. Mea culpa.

     I am a singer of modest talent. My family is very musical, in a VonTrapp kind of way. When you come to a family party, you can hear "Happy Birthday" in four part harmony, although curiously absent of melody - we compete to come up with the best parts. I'm more of a back-up singer than a front man, even when I'm alone in the car (it's kind of pathetic, that I'm not even a star when I'm rocking out alone, I know). However, I sang lead to my babies. Ben loved to sing with me until he was about 3, and then he moved on to other interests, but Mary is still my number-one fan.

     I am well versed in children's songs, having been a Pre-K teacher, but I  had no idea how useful it would be until I had Mary. Over the years, her favorite songs have changed, but she still likes my voice over anyone else's. Music opens up some kind of pathway to Mary, and she engages at a much higher level that during any other activity. She does not like to speak on demand, but if you stop during "Old McDonald," she will pipe in with the appropriate word, in her throaty little voice. I imagine when she does finally sing on her own, her voice will sound like Stevie Nicks'.

    It is handy to have built-in entertainment for Mary, and it certainly makes my diaper bag lighter, but sometimes even I get tired of hearing my voice. I recall driving to my brother's wedding rehearsal last fall, stuck in Long Island rush hour (yet another reason I am so grateful to live in a less-populated area), and Mary had hit her limit. I sang every song I could think of, from "Itsy Bitsy Spider" to "The Farmer in the Dell." I even threw in a few Christmas numbers and American folk tunes, before I ran out of songs. I just couldn't think of another thing to sing, and boy, did that piss her off. Not a pleasant ride that evening.

    But other than that, singing is my favorite way of communicating with Mary. It's funny how she demands routine in most areas of life, but when it comes to songs, novelties are welcome. Her Papa does a delightful variation of a well-loved children's ditty titled "Necks, Armpits, Butts and Feet" that sends her into gales of laughter, and give my throat a break. She's come to associate certain songs with certain people, and makes that their special thing to do whenever they see each other. My advice for those who know Mary, but can't seem to gain her favor - get a signature song. Mine currently is "Wheels on the Bus," especially the verse where the babies go "Wah wah wah." Mary thinks that's hilarious. Either she has a short memory, or she's sticking it to me, I can't tell.

     My last two postings have been song titles - anyone else want to help me keep it going?

  

Slow Ride

    There just isn't anything better than holding a baby. Those little, warm, sweet-smelling bundles are absolute heaven. It makes parents wistful for the time when their children were that tiny and precious. Any time there is a new baby around, somebody always sighs and says, "I wish they could stay this way forever." I have never been one of these people - infancy is nice, but I'm the type of person who has to rearrange my furniture every six months. I crave change, and one of the best things about having kids is watching them grow. They're always progressing, evolving, learning.

    Except when they don't.

     Mary's development is painfully slow. The time she takes to acquire a new skill is at least four times that of a normal child, and so change is nearly impossible to see until it's already there. Despite the patient guidance of numerous therapists, Mary does things on her mysterious timetable. Her typical m.o. is to watch an adult demonstrate a task, melt down and refuse to try it, and then practice it alone in her room later. As a result, her test scores are always quite low, and she functions as an 18-24 month-old child.

    I just can't stop and smell the roses here. I have had a baby for nearly five years now, and it is tiresome. Kids can be tedious in general, with their love for repetition. I shuddered recently when my son pulled up "Rookie of the Year" on Netflix, remembering the summer my brother watched it every single day. This was worse than the previous summer, when "Larry Bird: A Basketball Legend" whirred through the Betamax constantly. It's like when your kid wants the same bedtime story every night for a month. Green Eggs and Ham gets a little stale after a while. Now imagine reading it for a year and a half - although, in my case, it's Moo, Baa, La La La, which is mercifully shorter.

     I won't deny that there are some benefits. I still get all of the snuggles that I want. I don't have to deal with a preschooler who wants highlights - yes, that particular trend is going around at Ben's school. Mary is in no danger of growing up too fast, but I long for the kid she is going to become. I would kill to hear her say "No" fifty times in a row. Of course, anyone who's spent five minutes with Mary can tell you that she says no in many, non-verbal ways - head tossing, crying, throwing herself on the floor, or everyone's favorite, the motorboat. If I ever figure out how to post videos on here, you'll see what I mean.

     I will stop whining soon, but I'll leave you with one more thought - I have been changing diapers for eight years straight, and I only have two kids. Those people who say, "I wish they could stay this way forever"? Come on over - I dare you!

    

Gratitude

      Yesterday, the nakey-pants situation hit its apex. Mary so thoroughly trashed her bedroom carpet with a torn-apart dirty diaper that we had to throw it out. For the past couple of years, I have worked really hard at trying to see the good in all things, a challenge for my cynical nature. So her carpet is gone, and I will have to spend money on a new one. At least I will no longer have to deal with the handfuls of shag fiber that Mary rips up nightly, which drift through the house and stick to our clothes. As Ma Ingalls said, there is no loss without some small gain. Forgive the Little House reference - I just completed my annual re-reading of the series.

     Life is truly like that, though. As much as my grumpy side hates to admit it, there are upsides to most things in life. Having a disabled child means that my life is more difficult, yes, but at least it excuses me from having to serve on the PTSA. I still do a fair amount of community service - volunteering in my son's class weekly, being a Little League team mom, and sitting on the library's board of trustees - but I have a great excuse for not taking on any more than I can handle. I can say no with a clear conscience, instead of avoiding the recruitment efforts of the power moms on the playground.

     We live in an 1100-square-foot Cape Cod. When we purchased it eight years ago, it seemed large enough (to me, anyway - Gary has always maintained that it is a starter home), but two kids later, we are a little cramped. The house is sixty years old, and although it does have new windows and central air, it also features tiny closets and original kitchen cabinetry. While I may lust after self-closing utensil drawers, I can take comfort in the fact that I never had to childproof my tongue-and-groove oldies, because they require a stiff yank. While we did have a baby monitor, we never really needed to use it, because we can hear Mary loud and clear through the walls. Of course, this also means that the kids can hear everything we do in our room, but I'll think about that another time.

    I intentionally stopped working when Ben was two. I was ready to have another baby and be a stay-at-home mom until the kids were in school, knowing that if I needed to, I would go back to work. Well, now I need to, but I can't. The cost of a private nanny (because very few daycares would take a non-toilet trained four-year-old) would eat up my paycheck.  So, as broke as we are, we have so much to be grateful for. Many members of my family hire me to clean their houses or do other small jobs while Mary is at school. They are kind enough to act as if I am doing them a favor, when in reality they are buying my groceries. One relative has supplied me with freelance writing jobs, which gives me needed cash as well as a little pride, and keeps my brain from turning to mush. Our economic misfortune has made me appreciate what I do have - a super-supportive family.

     The loss of Mary's carpet had another small gain. It appears that she actually slept in her bed last night. Since she graduated from her crib, Mary has slept on the floor every night. Lately, she has been pulling down her blanket and pillow, which made me feel a little better about the situation. Maybe losing the carpet was the push that she needed.

     Of course, this means I'll have to start changing her sheets.

Nakey Pants

       Mary has reached a fun new milestone this week. We now have our own personal streaker in the house. Even as I sat down to post today, she was taking off her pants. Her m.o. is to wait until our attention is diverted, especially when the parent on duty decides to go to the bathroom or run upstairs to put away some laundry, then strip and sit on the couch. Unfortunately, she can't quite manage her shirt, so she ends up with her sleeves still on, and the rest of the shirt tucked behind her neck. On her, this is a pretty good look. Upon discovery, she grins and stuffs her hands in her mouth, eyes sparkling. She has pulled a fast one on us, and she knows it. Alternately, she runs away, although "run" is a bit if a stretch. Picture a small, fast Frankenstein lurching around the house, punctuated by an occasional jump.

     I should be grateful for this, as Mary didn't even begin walking until she was two and a half years old. On our family trip to DisneyWorld, in 2008 at Christmas, she was just on the cusp of walking independently, so she spent most of her days in the stroller, being pushed from ride to ride while napping intermittently. A word about Disney - the lines are truly hellish, unless you happen to have a disabled child in your party. Then, you are treated like movie stars. The staff gives you a special pass, good for up to six guests, that admits you to either the very short handicapped line or a special entrance to all attractions. You can imagine the number of dirty looks we received from exhausted families who were waiting an hour to ride "It's a Small World," which Mary rode five times in a row. With no waiting. Awesome.

     Even in the Happiest Place on Earth, however, things were not perfect. Because Mary was in a stroller and not a wheelchair, we were stopped at every entrance that said "No Strollers," even with not one but two handicapped tags attached. At the baby changing station, an attendant tried to prevent me from entering, and when I said that it was a handicapped stroller, she smirked and said, "Oh really." For those of you not familiar with the Disney employee code, this was the real-world equivalent of telling me to go f*** myself. I put on my coldest look and said, calmly but sternly, "Are you questioning me?"

     My brother, sensing the wrath I was about to rain down, wisely took his fiancee and left. Primed as I was for a fight, the woman backed down. In retrospect, I can sympathize with her - Christmas is insanely busy, and I wouldn't be able to be magically polite under her working conditions. But after defending my daughter's right to stay in her stroller for probably the twentieth time that day, I'd had enough. Disney brings out the worst in everyone, I think. So much pressure to HAVE FUN, DAMMIT!

     I'm glad to know that the next time we go to DisneyWorld, Mary will be happily trotting around. Most likely, naked.

Poop

     Last night, at Ben's baseball game, a mom asked me how old Mary was. This is a topic that has been brought up among the SMS parents I know in chat rooms. Do we tell the real age of our child, or adjust it according to their developmental level? There are arguments for both options, but I've always taken the middle ground - real age with the caveat "but she's disabled,  so she acts much younger." This is completely vain - I don't want the other playground mommies thinking that I am a bad mother because my girl won't play with other kids, or get out of their way when she takes 2 or 3 minutes to inch down the slides. Fortunately, in my small town, enough other parents know Mary, so I don't have to explain too often.
    
     Mary has come so far developmentally that I just gave her age to the mom, with no explanation. And I felt pretty good about it, until Mary's diaper suddenly soaked through. I can imagine that the other mother thought that it was strange that I was changing a four-year-old's diaper on the edges of the ballfield. Yeah, that's how I roll - I changed her right on our blanket, out in the open. We were on the end of the row of spectators, so we weren't putting on a show or anything.


     Then she pooped.


     Mary wears the largest size of regular diapers. We haven't moved up to special-order sizes yet, but it's getting to be that time. When she poops, it is Defcon 1, or 5, whichever one is the most serious. Her diaper must be changed immediately, or suddenly her motor skills will take a giant leap forward and she will remove the diaper and fling it around, contents splattering everywhere. On numerous occasions she has done this during her nap, and I've entered her room to find her white shag carpet, um, decorated. This is the same girl who feigns helplessness at all dressing tasks, the girl who has figured out very early in life that being pretty and cute will get adults to do things for you. When poop is involved, she manages to undress quickly, but if you ask her to try the potty, suddenly she doesn't know how.


     You'll be relieved to hear that I took her to the car for that diaper change, sparing the crowd from her mess. I wonder what the other mother was thinking. I know that I would have thought, "Jeez, why hasn't she trained that kid yet?" I'd like to say that raising Mary has made me less judgmental of other parents, but it hasn't. I saw a woman "walking" her dog while riding a golf cart last week, and I related the story to my sister, marveling at the woman's laziness. Emily (my sis) said that maybe the woman had MS, or another invisible disability, that forced her to do that. Hmm. Just like Mary. Yeesh, I'm a jerk.


     

The R-Word

       Mary has Smith-Magenis Syndrome, a rare spontaneous genetic deletion syndrome. She was diagnosed through genetic testing just before her first birthday, and at that time she was one of approximately 800 people diagnosed worldwide. It is estimated to occur in 1 of 25,000 births, and thus massively underdiagnosed. The site www.prisms.org is a great place to learn more.

     Basically, SMS is something that just happened to Mary while she was developing in utero, for no known reason. Only my daughter would have something so exotic; I find myself explaining her condition to medical professionals on a regular basis.  I find it easiest to compare it to Down's syndrome, minus the heart problems, plus even slower development. Although Mary looks a lot like a blond me at her age (though much prettier, IMHO), she shares facial features with other kids like her. The photo gallery on prisms.org shows dozens of kids who look like they could be related to her. Still, she is the prettiest, of course.

     So ... the R word. The polite thing to say is developmentally disabled or intellectually disabled. On an IEP you might see MR/DD. As a medical term, mentally retarded is useful, but, even for an insensitive Republican like me, retarded is just not ok. One exception is when I'm explaining her disability to older people - it just seems to click better. When I hear it being tossed around casually, I prickle. Especially when the person saying it is someone who knows and loves Mary, but just hasn't gotten that word out of their vocabulary yet. I can sympathize, to a degree. I had to stop myself from making short-bus jokes, too.

     When we call something or someone "retarded," we're really just saying that they're stupid. I used to say "faggy," when I really meant "wussy." A simple substitution is all that is needed here, kids. When a couple of co-workers were throwing the term around recently, I piped up. After the third useage of the word, I said, "My four year old actually is retarded, and she wouldn't do something that stupid."

     Dead silence.

     

     Followed by, "Oh my god, I feel so bad now." But my goal was not to shame these people - rather, I wanted to let them know, in a semi-funny way, that the word just isn't acceptable anymore. It's slightly nicer than getting all preachy, and the message is sent. 

     So try stupid, moron, idiot, dumbass, et cetera. Please just leave the R-word out of it.

I so need one of these!

Thank you, Alex. Awesome!

Road to Diagnosis, Part 2

     Mary was a good baby, but too good. At eight months, she was still happy to sit in my arms all day, and was not interested in toys. She had just begun sitting up, but was not reaching for things. At an age where most babies begin to get into mischief, I could set Mary down, leave the room, and come back to find her in the exact same place.

     Oh, how I long for those days!

      So first came the initial evaluation. A team of therapists came to the house and observed Mary. They hesitantly told me about what her delays were (pretty much everything), and were relieved when I told them that I had an appointment with a developmental pediatrician already. In our area, there is usually a six month wait, but I had a connection (thanks sis!) and was scheduled within two weeks.

     At the developmental peds clinic, I answered a lot of questions, and again Mary was observed. Her facial features made me wonder if she had mosaic Down's syndrome, while the doctors suspected Prader-Willi syndrome, due to her insatiable appetite and chubby physique. Although Mary rarely cried from hunger, she also wouldn't stop eating once she started. Either way, a visit to the geneticist was in order, and was scheduled soon after.

     Meanwhile, we had begun therapy. Mary had physical therapy twice a week for 60 minutes, and a special education teacher once a week for the same amount of time. Here I must give props to New York's Early Intervention system. They give you exactly what is needed, when it is needed, without hesitation and regardless of cost. I thank God every day I live here, despite the huge taxes that I used to complain about. After Early Intervention ends, at age 3, it's a completely different story, but more on that another time.

     So in August, about two weeks before Mary's first birthday, I got the call. The woman on the phone warned me, "I don't want you to run to the computer and read everything you can find, or you'll make yourself crazy, but I know I can't stop you. Here's her diagnosis." And so she told me it was Smith-Magenis Syndrome. I wrote it down, and somehow went back to Mary's therapy session in the next room. I managed to wait until it was over, and she was in bed, before I looked. I restricted myself to one site, and learned all that I could.

     The really fun part of all of this was that Gary, my husband, was out of town at the time. I couldn't tell him on the phone, so for the first time in my life, I managed to keep my mouth shut. For two days, I didn't breathe a word. Hardest thing I've ever done, and I include the involuntary natural childbirth of my son, after 40 hours of back labor!

     By the time her first birthday came, everyone knew. I gave everyone in the family the website to look at, and got my first "but she's so pretty!"

    

Road to Diagnosis, Part One

     When I had my first baby, I was hypervigilant about milestones. What to Expect the First Year had a permanent spot on my coffee table, and it was probably the only book I read that year. That may have had something to do with the fact that I had new-mommy brain, which severely limits the ability to remember people's names, much less follow plot lines. My now 8-year-old Ben, being the typical All-American kid he is, hit them all at exactly the right times. I found comfort in that, and spent my energy freaking out about other things, like recording bowel movements in a journal, which I've saved for him. I'm sure he'll treasure that someday.

     Every day, I would rush to pick Ben up after my half-day of teaching, to nurse him so that he wouldn't have to drink from a bottle. I would ask my in-laws, who were kindly providing many hours of free childcare weekly, to only feed him one pumped bottle during his four-hour stay at their house, reasoning that I nursed him right before I left, and would do so again when I returned. Even if he was crying. Even though they had a good supply of frozen breastmilk for such an occasion. Control freak much?

     When I had Mary, things were different right away. She had to return to the hospital shortly after her initial homecoming, for dehydration and jaundice. It was thanks to their lactation consultant that we discovered that Mary had a shortened frenulum (the thing which attaches your tounge to the bottom of your mouth), and couldn't nurse properly. She had it clipped the next week, but she had fallen victim to nipple confusion. I still blame the special care nurse for that one - when a mommy says wake me up for a feeding, you do it. You don't say, "Oh, you needed your sleep." You don't give a bottle full of Enfamil to a breastfed newborn. You wake up the frickin' mommy! So, nipple confusion, plus my poor pumping output, meant I now had a formula-fed baby.

     NOTE: I have nothing against formula feeding. I am simply cheap.

      Since Ben was breastfed, I was used to a hungry, cranky baby every two hours. Mary was placid, docile, and super sleepy. Frankly, it was a godsend, considering I had an active toddler to raise as well. Like most second children, Mary had fewer pictures taken, no poopy diaper diary, and I was far less inclined to keep track of milestones this time around. I congratulated myself on being a more relaxed parent, and simply enjoyed my baby. Even though she wasn't progressing much, I reminded myself that all babies are different, and that she would get there in her own time.

     She didn't.

     My mother and sister, both teachers, gently suggested that I should have Mary evaluated by Early Intervention. I balked, because nobody wants to hear that, especially from older, more experienced mothers to whom you desperately trying to prove your competence. Mix in some latent sibling rivalry, and that's a recipe for resentment and hostility. Lord, they were brave to confront me.

     And so, with Mary eight months old, we began our journey to a diagnosis.
    


     

Regarding the Title ...

     When I tell people that Mary is disabled (which I do way more often than necessary, but more on that another time), I get a range of reactions. My favorite has always been "But she's so pretty!", as if disabilities and attractiveness are mutually exclusive. Other times, it's said to imply that Mary's beauty is a consolation prize, which admittedly, it is. Her round cheeks, long blond hair, blue "Disney" eyes (my sister's term), and perpetual smile go a long way towards helping Mary in her interactions with others. Being pretty makes life easier for anyone, and Mary can use all of the help she can get.


      I keep Mary well groomed and in coordinated outfits as often as possible. People comment on what a fashion plate she is, and admire her hairstyles and earrings. Frequently, I see other disabled kids with utilitarian wardrobes and haircuts, and I wonder what their parents are thinking. Yes, my life would be easier if I didn't have to struggle with tangles and scrub out the endless food stains on her clothes, but what fun would that be? If I let Mary go through life unadorned, am I saying that she's not worth the trouble of being dressed well? Making Mary pretty sends a message to the world, and to her teachers at school,  that she is loved and cherished, even if she can't fully appreciate it.

     Or can she? When I took Mary to get her ears pierced at the age of 2 (I know, kind of tacky, but I couldn't resist), I showed her the choices for earrings. Though non-verbal at the time, she immediately made the sign for "I want." She barely cried during the piercing, and I think she was only protesting being held still. And today, if you ask her who the most beautiful girl in the world is, she loudly proclaims "Me!" She chooses her outfits and earrings each day with delight, and claps when her hairdo for the day is finished. She may just be glad that I'm done torturing her tender scalp with a hairbrush, but I choose to believe that she takes pride in how she looks.


     Pretty counts, people.
    

Welcome friends and family (because I'm sure that nobody else is reading this)!

     When I declared my major in college, I deliberately chose elementary education, not special ed or dual certification. In my suburban high school, the kids I knew who received special ed were learning-disabled. As far as I could tell, all that meant was that they didn’t have to meet deadlines, profited from selling their Ritalin, and cheated on tests with the help of their “readers” (OK, Tommy, your choices are a, b, CEEEE, and d, write your answer now!). I did not want to deal with whiny parents who claimed their child had ADD (yeah, I'm old, I predate the H), when really they were just suffering from the withdrawal symptoms of being separated from their video games for six hours a day. As I continued my education, I became more confident that I did not want to spend my days with non-communicative, combative or emotionally disturbed students. Of course, when I actually became a teacher, I had all of these types of students and more,  without the advantage of a diagnosis and the support staff which would accompany it. As a cocky undergrad, I was certain that I could avoid special education at all costs. 
     Then I had my daughter, Mary. And from the time she was eight months old, my life revolved around doctor’s appointments, service coordinators, and in-home therapy.  By the time she was two, a therapist was in my home every day of the week, sometimes twice a day. I was spending hours online, learning about her disability and looking for a connection with other families. Any conversation I had eventually came around to Mary and her syndrome. Like it or not, I was as involved in special ed as anyone could be. 

     The platitudes state that God doesn’t give you more than you can handle, that I was specially chosen to be Mary’s mother because of my strength. I have a slightly different perspective.

     God is funny.

     Only a God with a wicked sense of humor would give me a child that was the antithesis of what I’d wanted for my life. I never saw it coming, like any great practical joke. And before you think I’m a horrible mother, know that I love and cherish my Mary. But I am not one of those parents who say they wouldn’t change a thing about my child. You know, like deaf parents of deaf children who refuse to get them cochlear implants because it’s not part of their “culture.” What a load of crap. I would give Mary normalcy in a heartbeat.

     Yes, normalcy. Just because the p.c. army says “differently abled” or “intellectually challenged,”  I won’t pretend that Mary is just different. I won’t call her the r-word, either, but she is, to put it simply, disabled. It is my job to maximize her strengths and accommodate her weaknesses, not deny them.

     I’m no longer angry about Mary’s diagnosis. I’ve been through the stages of grief, excepting bargaining. I never really got that one. What does one offer God in exchange for new DNA for a child? Jewels? Cash? Animal sacrifice? I’ve accepted it and gotten on with our lives. However, I’m not going to go around forwarding inspirational quotes to my friends. I’m going to be honest. Raising a disabled child is a equal parts tiring, frustrating and hilarious, with a dash of wistfulness for what could have been. It’s very much like raising a normal child, except that people think you’re a frickin’ hero. That’s a nice perk, though undeserved in my case.

     There is a poem that is often given to parents of disabled children called “Welcome to Holland”. The writer compares raising a disabled child to planning a trip to Venice, but arriving in Holland instead. The main point is, you should go with it and enjoy the tulips, even though you were expecting gondolas, and stop mourning your loss. The author is right, but this kind a Hallmark-y schlock drives me nuts. Parenting is trench warfare and paradise rolled together, and I refuse to get philosophical or maudlin about it.

     When I decided to write about my experience raising Mary, now four years old, I knew that I didn’t want to write in platitudes. I’m not here to give advice or hope or inspiration. I like to call my perspective “realistically optimistic.” I leave the door open for possibility, while accepting the reality in front of me. I maintain a dark sense of humor about life in general. Most of all, I don’t sugarcoat.

     I have another child, Ben, who is eight. He will be featured prominently as well, lest I be accused of favoritism 20 years from now in some therapist's office. My husband, Gary, will also be included, as well as a huge number of other important people in our lives.

     I’m tellin’ it like it is, kids. If I offend you, get over it. If you relate to me, then I’m glad you don’t feel alone. If you think I’m a parenting genius, you need to seek professional help.