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!"