Wednesday, January 26, 2011

Our Latest Experience With the CDC

We've had a challenging couple of weeks. Thankfully we weren't surprised, because we're actually overdue for some fun new "oh crap" moments, but still I like to complain about it, so I will.

Today I'm only going to focus on one event, but it's a good one. Somehow my 9 year old managed to contract MRSA. For those of you who don't know what MRSA is, it's an antibiotic-resistant bacterial infection that is highly contagious and can be very, very serious and even fatal. If it becomes systemic, and you survive it, you can have lifelong difficulties. And I've heard from several people recently who were hospitalized for weeks or even months while they were fighting it. Yes, that's the latest thing my daughter decided to challenge herself with. Here's how it went down.

It's last Tuesday (January 18th). Kaitlyn says: Mom, I have a bump on my arm that hurts.

Me: Then leave it alone.

Kaitlyn: But it really hurts.

Me: (Exasperated sigh) Ok, let me see it.

I run my fingernail over the nearly microscopic bump and it breaks open

Me: It's just a little bump. You'll be fine. Here's a bandaid. Now go to school.

I then get Ashton on the bus, deep clean the kitchen including refrigerator and pantry, clean all the windows and window tracks in my house, take down the blinds and scrub them in the tub, sanitize all my bathrooms, vacuum and steam clean all my carpets, re-iron all the sheets and towels in the linen closet because I don't like how I did them Monday, cook and freeze two weeks worth of meals and bread, shovel my driveway and the driveway and sidewalks up and down my street, run 20 miles in preparation for the marathon I'm running next week, and take a shower. In other words, a normal Tuesday afternoon.

And it's purely coincidental that all of the levels on Angry Birds are finished and I'm about halfway through getting three stars on every level.

So then Kaitlyn and Ashton get home from school and we do the normal after school dinking around. I haven't given the bump on her arm a second thought.

At about 6:00 Kaitlyn starts complaining about the bump again.

Kaitlyn: Mom, the bump on my arm hurts.

Me: I'm sorry. Please clean the yogurt off the cat.

Kaitlyn: But it really hurts.

Me: If your arm falls off we'll take you to the doctor. Please get your Theraputty out of the spaghetti sauce. *


Me: Then get one! And please get your brother out of the garbage can!

At this point Kaitlyn gives up on me and starts on her dad. I hear him suck in his breath.

Mike: Steph, you probably want to come look at this.

Me: I'll be there as soon as I get the grape juice off the ceiling.

Mike: No, you should probably come now.

I stomp over there, look at her arm, and pass out.

1 minute later

Me: Why am I soaking wet? And why is there snow up my shirt?

Mike: I needed to wake you up fast. And the snow up your shirt was Ashton's reward for only having one meltdown at school today. **

I then remember the last 2 minutes, which included looking at one of the most disgusting things I've seen in a long time. I start to get woozy again, but Mike is standing over me with a grin on his face and a glass of water in his hand, and Ashton is standing over me with a grin on his face and a snowball in his hand, and since we don't want to reward Ashtond too much for only having one meltdown, I manage to cling to consciousness.

I took a picture, but very unfortunately it didn't turn out. I'll describe. In the few hours she was at school, the tiny bump had turned into a crater about the size of a nickel. It was black inside, red outside, and was oozing yellowish-green pus. The description doesn't do it justice. Just believe me when I say that it was something I hope never to see again.

Me: That looks pretty gross. We should probably take her to a doctor.

Mike: Good idea.

So Kaitlyn and I take a trip to Instacare. The doctor looks at it and says it's a staph infection, which has me nervous but not too nervous. She swabs it for a culture and tells me she'll call back if it turns out to be anything else, then gives us a prescription for 2 antibiotics, tells us to keep the wound covered and keep her hands clean, and sends us on our way.




Friday night. It's about 8:00 and the kids are getting ready for bed.

Ashton: Mom, will you stop playing Angry Birds and put my pajamas in the dryer?

Me: Just a minute, dear. Another 50 or so tries and all those stupid pigs will be MINE.

Ashton: Oh, so we can say stupid now? Will you put my stupid pajamas in the stupid dryer so I can go to stupid bed because I'm stupid tired?

Me: Crap.

Ashton: Oh, so we can say crap now too? Will you put my stupid crap pajamas in the stupid crap dryer so I can....

Luckily, just then the phone rings.

Me: Hello?

Person on the phone: Hello. This is Dr. Someoneorother. I'm calling because we got the results of Kaitlyn's culture, and she doesn't have staph. She has MRSA.

Person on the phone: Hello?

Person on the phone: Are you there?

Me: Blurgulumkulurp

Person on the phone: Is there someone else there I can talk to?

I take 3 deep, cleansing breaths and try it again.

Me: Um, what does she have? I thought you said MRSA, but you can't have said that, because that's what my friend's father in law died from and what put my other friend's mom in the hospital for 3 months, so MRSA is unacceptable. Please go back and try again.

Person on the phone: No, she really does have MRSA. She'll be fine. Just stop giving her the stuff I prescribed on Tuesday and start giving her this new stuff. And don't let her touch you or anyone else in your family or anything in the house. And if she gets any kind of fever or develops any new sores take her straight to the ER. Oh, and you'll have to hose down your entire house with Lysol, so I hope you really like the smell. And every sheet, blanket, towel, and article of clothing she's touched in the past month will have to be burned and the ashes buried under an elm tree during a lunar eclipse. Good luck.

Me: It can't be repeated because this is a family show.

Person on the phone: SLAM

The following days include two missed birthday parties and lots of phone calls from various health organizations, including the Center for Infectious Diseases and the CDC. Let me just tell you what a treat it is to talk to those organizations. If you're ever feeling like you have too much self esteem and need to be knocked down a notch or two, I highly recommend giving them a call. I won't go into detail, but you can trust me on that one. I also got to call her teacher and explain that I had sent my daughter to school for 4 days with one of the most infectious diseases known to man. She got to spend her Friday night driving to the school, getting the phone numbers of all the kids in both of her classes, and making 35 phone calls to warn the parents. If we weren't popular before, we certainly are now.

So the good news is that she responded well to the antibiotic and didn't have any complications. She went back to school today and hopefully this is all behind us now. And the very BEST news is that this latest adventure didn't add another specialist to our ever-growing list. It was just your everyday run-of-the-mill deadly infection. Whew.

* If you don't know what Theraputty is, good for you. I'd suggest keeping it that way. You know how convenient and fun Play-Doh is to clean up? Pretend your Play-Doh is super sticky and never gets dry and stains everything it comes in contact with. Then allow your 7 year old to put it between the couch cushions so he can "see what happens." That's another one of the fun things that happened at our house this week. I'm still trying to figure out how to get the bright green to coordinate with our light brown couch, since it will never come out. If you have any suggestions, I'm all ears.

** Ashton has decided to start having meltdowns at school. Since I can't talk about this with any degree of humor right now, I'm going to wait to post about it. You're welcome.

Wednesday, January 5, 2011

Cheer Up! It Could Be Worse! Part 2

One of my New Year's resolutions is to make sure I update my blog at least once a week. We'll see how long it lasts.

Today's blog is going to be a bit different than the others. I'm going to dedicate it to a little girl I've never met and to her mom who (whom? I can't remember and I'm too lazy to look it up right now) I met briefly and who is one of the nicest people I've talked to in quite a while.

A few days before Christmas my sister told me about a family in her neighborhood who was going through one of the worst situations imaginable. Their 4 year old daughter had been complaining about a stomach ache for a week or so, so the mom took her to the doctor to see what was up. What should have been a run-of-the-mill trip (it's just a virus, nothing you can do, keep her hydrated and it'll go away) turned into a hellish nightmare that is just beginning to unfold.

After poking and prodding and testing, the doctor told the mom that her daughter likely had some kind of cancer and that it was probably at stage 4. The doctor wanted to arrange for Life Flight to pick up the girl to fly her to Primary Children's Hospital because the cancer appeared to have spread to her lung and he was worried about her breathing. So four days before Christmas this sweet family, whose lives had been pretty normal up to this point, found themselves flying to a hospital in a city several hours away so they could start fighting for their daughter's life.

It turns out this little girl has a form of kidney cancer known as Wilms Tumor. It has metastasized to one of her lungs along with other places in her abdomen. She is undergoing an aggressive 6 to 8 week course of chemotherapy, after which the doctors will reevaluate the situation to see if the tumors have shrunk enough that they can be safely removed. She could be in the hospital the entire time, depending on how she responds.

Kaitlyn had a doctor's appointment yesterday so we stopped at the PICU to take the girl a small gift. I spoke with her mom for quite a while, but instead of talking about how horrible her daughter's situation was or how stressful things were for her, she talked nonstop about how wonderful people had been to her family and how great the hospital was and how beautiful my daughter was and how kind we were to go up there to see them. Now I'm sure she has her moments when she falls apart, or at least I hope she allows herself to do that, but when I met her she was positive and kind and sweet and, most of all, GRATEFUL.

I truly believe that when you're given a challenge you're almost always strong enough to endure it. And sometimes enduring is all you can hope for, and to be honest, sometimes it's enough. But to be right in the middle of the trial and to be able to leave your self-pity long enough to not only be kind to a stranger, but also to show GRATITUDE, is pretty amazing.

So although I hate the phrase "it could be worse" more than I hate rude drivers, there are situations where it truly applies. This is one of them. As hard as our challenges are at times, I'd still take them gladly, over and over, if it meant I didn't have to go through the heartbreak this family is experiencing. And I know that at this point in my life I'm not even close to having the attitude this mom has. So thank you, Chandra, for sharing your beautiful daughter with me, and for allowing me to see what true kindness and gratitude look like.

Now I'd like to ask a favor. If you believe in prayer or positive thoughts or healing light or something I can't think of, please send some to this family. They have a long road ahead of them and can use all the strength and encouragement they can get.

You can follow their story here:

Wednesday, August 11, 2010

Cheer Up, It Could Be Worse! (and other meaningless sayings that make you want to punch someone in the nose)

People mean well. They really do. Think about it: When you encounter a friend who is facing a crisis, there is an almost primal instinct to try to take away the pain and make it all better. No one wants to see a loved one suffering, and more importantly, no one wants to listen to said loved one whine and complain.

Unfortunately that primal instinct to make things better usually leads to panic and desperation. (Oh no - she's sad. What do I do? Think think think. Uh oh... I'm pausing too long... I better say something... Are those tears in her eyes? I better say something NOW... AAARGH! Ok - here it is - "CHEER UP! IT COULD BE WORSE!")

Let me just say that I KNOW things could be worse. They can ALWAYS be worse. I am very blessed to have what I do, and many, many parts of my life are absolutely wonderful. In addition, I am so mindful of the fact that we live in a country of great wealth and happiness, and that my children have access to some of the best healthcare in the world (although we can't really afford that healthcare, but that's another rant for another day). If they had been born in another time, or in another place, their lives would be very different and most likely those differences would not be good. I am thankful and grateful for the blessings we have.

That doesn't mean that certain things in my life don't blow chunks.

So when I'm down in the dumps and wallowing in misery, and someone tells me to cheer up because it could be worse because they saw this one family on TV that has 6 kids with autism so I'm lucky that I only have 2 kids with special needs, MY primal instinct to scratch someone's eyes out comes dangerously close to the surface.

As a side note, that family really exists and I met the mom at my son's preschool graduation. Her son and my son both went to a school for children with autism. And certain parts of this mom's life really, really suck. So the comment that my life could be worse is definitely true, and it's important for me to remember that sometimes. However, it's still not smart to tell me that. Better for me to remember it all by myself. Trust me.

So my point to all of this is that although things can always be worse, that doesn't mean you don't have the right to be sad and angry and frustrated about the challenges you are facing. You have the right to mourn, and in fact you SHOULD mourn. There is a grieving process attached to every loss we face and if you don't deal with the grief when the loss happens, you will deal with it eventually. It's one of those inescapable facts of life. And even when you feel like you've dealt with the grief, it may decide to come back out of the blue and smack you upside the head. One moment you could be a perfectly normal person sitting in the movie theater watching Zombieland 2: Revenge of Bill Murray, and the next moment you could be sobbing over your diet Coke, popcorn (with butter), and Everlasting Gobstoppers because that sweet old lady with the black goo coming from her mouth reminds you of your third grade teacher, and you really miss your third grade teacher. See, that's how grief works. Just when you think you've got it all figured out, it comes back to show you who's boss. So just to be safe, it's probably a good idea to carry a pair of sunglasses with you at all times so if you do burst into tears for no discernable reason, you can hide behind them and tell everyone you meet, "Dude, I got so wasted last night that I can't even open my eyes. Do you know where I live?"

Having said all of that, let me just point out that it is not a good idea to spend the rest of your life sad and miserable. Even though you have the right to cry and yell and scream and rant and rave, it's probably best to try to figure out ways to live with the grief so you can find the joy and happiness in your life. I don't know about you, but in all but my darkest hours, I can find so many things to be grateful for that at times I wonder how I could possibly be so lucky. And for me, the joy and gratitude feel so much better than the pain and anger.

So to sum up, when people tell you to cheer up because it could be worse, do your best to take a deep breath, lock your wrists behind your back so you can't punch or scratch, remember that they mean well and just want to make it all better, and after you've done all that, THEN you can release the look of instant death and/or tell them to stick their platitudes where the sun don't shine. Then later, much later, when you've had time to heal a bit, you can remember that things really could be worse and maybe life isn't so bad. And then after that you can maybe think of Rule #37: Take Time to Enjoy the Little Things. At least you aren't a zombie.

My apologies to anyone who hasn't seen Zombieland. If you are able to get your hands on the airline version of the movie, I highly suggest watching it. It's the stinking most hilarious movie I've ever seen in my life.

Sunday, July 18, 2010

Learning, Growing, and "Oh Crap" Moments

My life, like yours I'm sure, has a lot of "Oh Crap" moments. For me these include, but are not limited to:

Oh Crap, we're supposed to be at the doctor's office in 10 minutes and I can't remember where I put Kaitlyn.

Oh Crap, the 3 DVDs I checked out from the library were due back a week ago so now I owe $21. $%#!& (we finance a LOT of new books for the library. You can thank us any time. Monetary acts of gratitude would be appreciated)

Oh Crap, the car registration was due 3 months ago and there's a cop right behind me. (just FYI, quickly pulling into Subway under the guise of getting a Diet Coke will not fool police officers. They will know you had an Oh Crap moment and were trying to get away from them and they will give you a ticket anyway)

Oh Crap, the carpet cleaners will be here in an hour. (this should be self-explanatory)

And one final moment, probably my least favorite of all:

Oh Crap, I think I'm on the verge of "learning" and "growing," and this is gonna hurt.

For some reason known only to the Big Guy up above, I have not yet reached the point where I don't need any more self-improvement opportunities. I know, I know... it's hard for me to believe too, but I promise it's the truth. On occasion, when my life seems to be swimming along just fine (or at least when I'm clinging to some floating garbage that is heping me keep my head above water while the storm is raging around me), He will decide to have some fun and throw in a bonus surprise. Sometimes the surprise is something awesome like a cool water cannon that lets me sneak up on my husband and soak him with icy cold water while he's relaxing in the sun. Usually though it's something more like one of those jellyfish that don't kill or maim but sting you and cause horrible pain until you finally give in and pee on yourself to relieve the agony.

So in this "swimming pool of life," I have been stung by that dang jellyfish more times than I can count. Definitely enough times that it has caused permanent swelling on my hiney (oh yes it is TOO swelling caused by jellyfish stings. What exactly are you implying?). And I'm starting to figure out that no matter how many times I get stung, I will never be done. As long as I'm still swimming, the jellyfish will keep on a-comin'.

Wow. That was profound. Woot!

The hardest of these learning, growing, stinging Oh Crap moments are those that revolve around my children. See, right about the time you hear the words, "There may be a problem with your child. We need to do more tests to be sure," you are catapulted headfirst into a giant sea of Oh Crap. Any ideas you may have had about your and your child's future are instantly vaporized and replaced with a great big lump of Nothing. Then, as your child grows, the Oh Crap moments come and that lump of Nothing slowly fills with Something. Unfortunately, I can't tell you what Something is, because it's different for everyone. But it's always interesting, and it's almost never what you had planned.

Now I know some of you are saying, "But that's the same with every child! You never know what's going to happen, and even typical children don't do the stuff you had planned for them!" Yes, this is true. However, the difference is of degree. For example, as the parent of a typical child you may have planned for your firstborn to be a rocket scientist. Instead, he decides to dink around in high school, drop out completely, and become a game tester for Nintendo while living in a basement apartment with a roommate named Pooper. Not exactly what you had planned, and incredibly aggravating and heartbreaking. I do not deny that this is painful and frustrating and brings plenty of Oh Crap moments in and of itself.

Contrast, however, the parent of a child with special needs. You had the same plan for your child: Rocket scientist. But instead of a gradual realization that your child will do what he wants, not what you want; you are immediately forced to confront your greatest fear: Your child may not be capable of working as a table cleaner at Wendy's, let alone buying out Bill Gates and forcing him to use nothing but Apple products for the rest of his life. Oh Crap. Instead of worrying that your child is dinking around in school, you worry that you are destroying any chance at a productive future for your child because you can't find him an appropriate education since nothing offered through the public education system fits his needs. Oh Crap. Instead of agonizing because your child is dropping out, you agonize because your child has missed so many days of school due to doctor's appointments, illnesses, and various other Oh Crap moments that he is frustrated with his work, hates school, and may have to be held back and not allowed to continue on with his classmates. Instead of fuming because your child is molding over in his best friend's dark, dank basement, you are slowly realizing that this child may never be able to live on his own; that instead of having a wife and kids (or a guitar and a band named Port-a-Potty), he will live in your basement and be cared for by you for the rest of his life.

Oh Crap.

Personally, I think I'd rather deal with option 1. Because when it comes down to it, even if your child isn't doing what you had planned, at least he is out on his own, and you are afforded some blessed relief from the constant day-to-day tedium that is parenting.

Yes, I adore my children and if they aren't capable of living independently, I will gladly provide them with everything they need for the rest of my life. But if I'm being honest, it won't be my first choice of things to do with my golden years.

We have come to realize that the worst Oh Crap moments happen about twice a year. Right about every six months we can expect our little jellyfish friend to pay us a visit in the form of a new and completely unexpected challenge. Sometimes it involves the health and welfare of our children, and sometimes it is designed to help us deal with the challenges that are to come. We never know what it will be, but we do know that it will help us to learn, help us to grow, and will be more painful than we ever expected.

And in the end, after the pain has subsided, we will discover that we are stronger, smarter, and more capable of handling the next Oh Crap moment that comes along.


Wednesday, July 14, 2010


The longer I go without updating my blog, the harder it gets to actually do it because in my mind the post must become more and more monumental with each passing day. I plan on blogging again tomorrow after the carpet cleaners come, since the rest of today and all of tomorrow morning must be dedicated to clearing paths through my house so the carpet cleaners have empty sections of carpeting that can actually be cleaned. It's gonna be a fun day.

Sunday, June 20, 2010

One of the Few Perks of Being a Kid With Special Needs

We don't leave town very often. With all the convenience and gaiety of handling our children's special needs, making every day a vacation; coupled with general poverty resulting from Mike being a junior high school teacher, eliminating the need to worry about dealing with any pesky extra income; we usually spend our time hanging around our humble abode.

Once in a while, however, the planets align and we have a brief window of opportunity where we can hurl the first things we see into the car, throw ourselves in after them, and bolt out of town before someone has the opportunity to develop a never-before-discovered rash that lands them in the New England Journal of Medicine.

On one vacation we ended up bringing 2 toothbrushes (there are 4 of us), a box of Kashi Go Lean cereal that had been in the pantry for three years, a basket of dirty laundry, and our inflatable swimming pool. At least the basket of dirty laundry had extra underwear in it. We think one of the kids put the swimming pool in.

Anyway, we experienced one of the rare planet alignments last week. We had the fabulous opportunity to leave our cold and rainy city and head to the blue skies, warm sunshine, and sandy beaches of Southern California. I am from So Cal and despite having lived in Utah for most of my life, I still consider myself a California girl. Just leaving the desert wasteland of Primm, Nevada and entering the desert wasteland of Primm, California brings tears to my eyes. I don't care about traffic, pollution, filth, and road rage; California will always be my home.

So this trip was especially exciting, since I was going home. We were also going to one of my favorite places in the world - The Happiest Place on Earth - Disneyland. Aaahhhh, even the word brings a smile to my heart.

During this trip, and during a couple others we were fortunate enough to enjoy, we unearthed some very valuable information about Disneyland. You may already know this, but I didn't, so I'm going to share the wisdom of my experience. Ha. Drumroll please:

This is not advertised, but if you know what to ask for you may be able to get an amazing little piece of paper that I call a 'special needs access pass.' There may be an official Disneyland name for it but I don't know what it is.

Have you ever been in line for Splash Mountain for an hour and a half and seen someone flash a magical, secret card at the ride attendant and then immediately enter the fastpass line? Have you wanted to curse their loins and scratch out their eyeballs? Yes? Well you, too, may be lucky enough to be among The Most Hated People at The Happiest Place on Earth.

I want to preface this by saying that the vast majority of the time I want my kids to be treated just like every other kid their age, or at the most be given accommodations to help level the playing field. In general I don't think they are deserving of special treatment just because they deal with challenges that may be more difficult than most. That philosophy does not extend to Disneyland.

So how do you get this special card? Here's how we did it. Kaitlyn was 5 the first time we went to Disneyland. She could walk pretty well by then, but she has a condition called hypotonia that makes it difficult for her to be on her feet for long periods of time without causing her complete exhaustion and severe pain. She was in a stroller, and for the first few rides we tried to navigate the stroller through the lines. After a couple hours of this and a lecture from an employee who was less than thrilled that we were breaking the rules (which we didn't know existed), we parked the stroller at the end of the line and carried her in with us. So we're in line for Dumbo, there are 600 screaming kids in line with us, we're in the middle of about 12 billion other screaming kids who are in lines for the surrounding attractions, it's 95 degrees outside, there is NO shade anywhere to be found, and we're carrying a 50 pound kid for 6 1/2 hours while we wait for our turn to spend 45 seconds on a flying elephant. We were not too happy.

After this miserable experience we decided to go to City Hall to see if anything could be done before we told The Happiest Place on Earth where to stuff it. We approached the smiling girl behind the desk and explained our dilema. To our surprise and delight she apologized profusely that no one had noticed our plight and offered us assistance. She then promptly produced the amazing, beautiful, life-saving magical pass that allowed us to use a stroller as a wheelchair and thus enter rides through the wheelchair line. She also noticed her hearing aids and Coke bottle glasses and asked us if we would like a magical stamp on her magical pass that would allow her to have front-row access to any of the shows she wanted to see. This pass allowed up to 5 people to join her, so everyone in our family, including Grandma and Grandpa who had paid for the trip, were able to enjoy these fabulous perks. This was heavenly and turned an almost unbearable experience into a pleasure.

This time when we went, she was much too big to use a stroller. We very carefully explained to her that she'd have to walk through the park on her own because she is a big girl now. She walked valiantly and stalwartly for about 20 minutes before whining and asking for a piggy back ride. Not wanting a repeat of our first experience, we rented her a wheelchair and were again able to use the wheelchair access line. We got plenty of dirty looks and loin cursing when Kaitlyn would jump out of the wheelchair and bounce onto the rides, but we got good at ignoring it after a while.

A couple years later we went to Disneyland again. This time Ashton had been diagnosed with autism and we finally had an explanation for his quirky behavior and random tantrums. Since we had just endured a singularly horrible trip to Chuck E. Cheese, we were pretty worried about how he would handle all the noise, crowds, confusion, and people dressed as stuffed animals. Turns out we were right to worry. We went to California Adventure and didn't use Kaitlyn's wheelchair pass because all of the rides in CA are wheelchair-accessible. After the second ride, and hours spent in noisy chaos, he stopped all pretense of cooperation and put on a spectacular tantrum that impressed even the other kids who were having their normal, every day tantrums. I'm sure he taught those kids a few things that became very valuable as they learned how to use them to their advantage. When the tantrum appeared to be subsiding, a concerned looking mother recognized the signs and walked up to tell me that her son had autism and had a pass that allowed him to use the exit to the rides instead of the entrance, thus permitting him to avoid the worst of the noise and confusion. Off we went to get this magical pass, and the rest of the trip became tolerable, if not downright enjoyable. It saved Ashton enormous amounts of stress, and saved us enormous amounts of aggravation since we were able to use our $200 passes for more than 4 rides.

There are of course a few caveats and rules of etiquette for using these passes. First, it is usually, but not always, faster using the special needs access line (which is usually either the exit to the ride or the fastpass line), but there are a few rides that can be counted on to have longer special needs lines. Some of the most prominent are Pirates of the Caribbean, it's a small world, Star Tours, and sometimes Space Mountain. Use this information as you will.

Second, it can be tricky to know exactly where to enter the ride. If you have any questions, you can ask any cast member who happens to be nearby. They have all been wonderfully accommodating and haven't sneered at us ever. Well, maybe they have twice but that's it.

Third, if the special needs line is 10 minutes long and the regular line is an hour, you should wait at least 50 minutes before riding a second time. It is considered bad form to ride Buzz Lightyear Astro Blasters 6 times in a row before the people in the regular line have ridden once.

Fourth, you should use fastpasses and regular lines as often as possible. If you don't have to use the special needs line, don't. It's just plain good karma.

Fifth, and this is pretty obvious but bears mentioning, the person to whom the pass was issued must be riding the ride. You can't use it to go on Indiana Jones if little Suzie is terrified and refuses to go. But nice try.

Last, you might want to come up with your own rules governing the pass. The rule we use is thus: When whiney child says, "I wanna go on Mr. Toad's Wild Ride RIGHT NOW!," we walk past the ride, see how long the wait is, and make whiney child wait that amount of time before we get in the special needs line. This teaches them that they still have to wait their turn, and helps them appreciate their enormous perk. We fill in the time with less desirable rides (although it is difficult to find a ride less desirable than Mr. Toad's Wild Ride) and other rides they have waited for. This also eases our consciences a bit, because after a while when we've ridden every ride in the park twice, we start to feel guilty.

So there you have it. The secret to our success at Disneyland. And if you don't happen to have a child with special needs, there are only four people in our family so we can take two others with us. We'll start accepting bribes as soon as we announce our next trip.

Saturday, June 12, 2010

To Label or Not to Label - That is the Question

I really had no idea how many decisions I would be required to make as a parent. For example:

Where exactly does this thing sleep? (I faced this question immediately upon walking in the door from the hospital. Kaitlyn was asleep in her car seat. Do I leave her in it? Take her out and put her in her crib? Put her in my bed? Hold her in my arms? In the end I took a multi-faceted approach: I kept her in her carseat and put the carseat in the bassinet in my room. Then I kept my hand on the carseat so it wouldn't magically fly into the air and tumble on the floor. That way I had most of my bases covered)

Do I make my kid wear one of those scrunchy headband things that look like they're going to squish her brain right out?

Do I pick her up immediately when she cries so she learns to trust me or do I let her cry for a while so she can learn to soothe herself? (!@#$ Spock, Ferber, and Baby Magazine. Can they please coordinate their advice? Please?)

Then when my son came along:

You're going to cut off WHAT? Who first decided THAT was a good idea?

Can I put a hockey mask on him right now, because I'm pretty sure Kaitlyn is going to go straight for the eyes.

Can we pretty please pretend this isn't his first Christmas? I'll take a thousand pictures next year, I swear. (He was born December 22 and came home December 24. REALLY bad idea.)

And so on.

If only I knew that this would be just a taste of the things yet to come.

One of the most challenging questions I faced is one that I still face on a regular basis. When both of my kids were diagnosed, I didn't know who to tell what about their conditions and when I should do it. Do I tell them now, so they understand them a bit better and know better how to communicate with them? Or do I wait to see if it's necessary first, because I don't want people prejudging them?

On the one hand, there are real advantages to informing people right away:

"Don't pay any attention to my son, who is reciting a list of what he calls 'Mommy's Sewing Words.' He has autism and he'll say anything."

But then when I do tell people he has autism, they invariably look at him like he's going to spontaneously burst into a full-body tantrum. Or bore the pants off of them with minutiae about the hoverfly (did you know that hoverflies are distinguished by a spurious vein, located parallel to the fourth longitudinal wing vein?).

Yes, both of these things have happened. Numerous times. And there's a very good chance one of them will happen approximately 30 seconds after he meets someone new. But there's always a possibility that he won't do anything interesting or unusual, thus giving people an opportunity to discover how smart and adorable and funny he is without knowing the challenges he faces.

In some situations I think it's better not to say anything and let nature take its course. The decision becomes trickier, however, when I'm introducing him to new teachers or other adults who are going to be telling him what to do. In that case I think it's in their best interest to be forewarned that if they do tell him he needs to sit down and do his work, they run the risk of becoming ensnared in a 10 minute conversation that will result in the teacher having no idea why s/he asked him to sit down in the first place and why in fact they are a teacher at all. He has convinced many a person to give up teaching and become a lion tamer in the circus, which in their mind becomes a much more pleasant and less risky profession.

The situation is the same with my daughter. She faces different challenges, but I still have no idea when I should tell people what they're in for. Some of them become apparent pretty quickly (for example, she's hearing impaired but can't wear hearing aids right now because she had surgery on her ear canals, so it is very difficult for her to hear unless you are looking right at her and speaking LOUD). Some things take a bit longer to figure out.

In a perfect world, no one would care that in addition to the challenges most people face, my kids have an array of different issues to deal with. They wouldn't have to be labeled with anything other than what is immediately obvious: Girl, boy. Brilliant for who they are, beautiful for who they are. Hilarious. Children of God. The loves of my life. These are the things that are important for people to know.

We don't live in a perfect world.

We live in a world where physical beauty, charisma, and intelligence are valued above all else. I'm not going to get on my soapbox right now, because that topic deserves its very own post. Or book. But I will say that anything that is slightly outside of a very narrow view of "normal" is pushed aside and moved to the back.

My children will not be pushed to the back.

So do I tell people right away that things are different for my kids? Or let them figure it out by themselves?

Several friends and family members have told me that I shouldn't bother mentioning their challenges. Almost as if if I don't mention them at all, people won't notice them. There are a few reasons I don't follow this advice. In addition to the ones I listed above, there is another that is perhaps most important of all.

My children are amazing. They will NOT be embarassed by, ashamed of, or sad about who they are.


They are different, and that's ok. I will not hide anything about them just so people can continue their ignorance of or prejudices against people with special needs. They should not be shunted off to "special" classes so typical children and gen ed teachers don't have to deal with them. I'm not going to keep them out of dance lessons and off of soccer teams because they don't do things as well as some. They shouldn't have to sit out just because they make other people uncomfortable or unhappy.

This is a controversial topic, and many times I've heard that it's not fair to have special needs kids in a typical classroom because they detract from the overall learning of the class. But why should my child have to be isolated in a different class, separated from their typical peers? Instead, can't we have supports in the classroom to help everyone be successful? Maybe pullouts for subjects that are more challenging, but the majority of the day spent with typical peers? Why is it preferable that some be segregated? We've already proven, quite unequivocally, that separate can never be equal.

Let me add that I have several friends who have chosen to put their children in schools that deal exclusively with their child's challenges, or who are in neighborhood schools but in a self-contained unit. This can be very beneficial for some children, and as long as this is the parents' or the child's choice, it is fantastic.

Wow - didn't know I was going to go off like that until just now. Obviously I have strong feelings on the subject, and this is a topic better dealt with on its own. So for now I'm going to step back from the ledge, peel my fingernails out of my palms, and start some deep breathing exercises. Ohmmmm. Ohmmmmm.

Back to the topic at hand. Until the world stops defining success by appearance and financial standing and starts defining it by personal accomplishments and determination, I will continue educating people by letting them know that my children face challenges most people don't and they work very hard and deserve all the praise and acknowledgement that a typical child does. Labels CAN be detrimental, and ideally they would not be needed. But until we live ideally, my children will not hide who they are. They will instead celebrate their differences and teach others that * most everyone, no matter what challenges they face, are deserving of love, respect, tolerance, and equality.

It is very precarious to leave this topic as it is, and I have a lot more to say. I haven't really addressed how to educate people about special needs, or how to explain things to classroom teachers so they don't prejudge my kids and expect less from them, or told my ideas on how to make classrooms, sports teams, etc. more equitable for all, and I haven't made sure that people know I don't expect my children to be given any more than a shot at a level playing field. These topics will be addressed in many posts, so feel free to share your comments. Let the debate begin!

* There are some situations where people are not deserving of respect, tolerance, and equality, but I won't go into that here.