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.

Thursday, June 10, 2010

Special Needs Mom Brain

Mom Brain is an unquestionable fact of life. The concept is grounded in science, because it follows one of the most basic laws of physics: For every action, there must be an equal and opposite reaction. So by adding a precious, sweet, squalling creature to your home, and thus becoming a mom, something must necessarily be subtracted. In my case, and in the case of most every mom I know, the thing that is subtracted is a chunk of brain. The big chunk that is in charge of remembering stuff.

Adding another precious, sweet, squalling creature to your home necessitates subtraction of another chunk of your brain. This time it varies for everyone. For me it was the little teeny chunk that controls the impulse to eat chocolate and dink around on Facebook all day.

Adding more kids subtracts more chunks of brain. This is why moms like me who only have 2 kids are so much smarter than moms like Amanda who have more.

There are other factors that determine how much of your brain you have left, however. Certain kids bring more than just their precious, sweet, squalling selves. Lots more. So, you guessed it, lots more brain must be subtracted. This is what I like to call 'Special Needs Mom Brain.'

With these moms it's impossible to tell exactly what portions of brain are gone, because it seems to change from day to day. This is both good and bad. Bad because when you don't know what's missing you don't know what situations to avoid, but good because sometimes you can fix yesterday's mistakes, as on occasion the chunk that was missing one day will come back the next.

Today I'm going to give a list of this week's 'Special Needs Mom Brain' moments.

1. I completely forgot to send Ashton to school this week. Instead of a traditional school year where you go to school from September to June, his school has "tracks." Your kid can either be on A, B, C, or D track, and each track goes to school at different times. Usually the system is that the kid is "on track" for 6 weeks, then off for 3, then on for 6, then off for 3, etc. This system is especially helpful for Ashton, who has autism and really hates change. So just as he is getting adjusted to being in school, he goes off track. Just as he is getting adjusted to being off track, he goes back on. We get to experience first-week-of-school anxiety like 8 times a year! It's fantastic. Anyway, Ashton's school is on the track system. Kaitlyn (who attends the School for the Deaf) and Mike's (my husband, who is a school teacher) schools are both traditional. Kaitlyn and Mike's last day of school was last Friday. Ashton still has school until July 2nd. But instead of sending Ashton to school when I was supposed to, I kept him home doing summer stuff with Kaitlyn and Mike. No problem on his part. A little bit more problematic for me. Especially when I had to call the teacher to tell her that I "forgot" to send him to school. Awesome.

2. I took the car to get the oil changed. If you've read any of my previous posts, you know this is a treat for me. This time I took it to Jiffy Lube instead of Walmart because they had a dancing guy out front with a sign saying, "Open bay! Get your oil changed for only $25.99!" The dancing guy was cute so I pulled in. He then proceeded to ask questions about the car. Really tough stuff, like:

What year is it?
Is it 6 cylinder?
Does it have 4-wheel drive?

After I answered:

2010 (at first I thought it was a test to see if I was awake, but when I realized he wanted to know what year the car was manufactured, I had to look it up. For future reference it was 2006)
How do I tell if it's 6 cylinder? and
Umm... it has 4 wheels and they all turn, so yes?

he stopped asking me questions and just looked up the answers in the manual. Cute dancing guy or not, I don't think I'll be going back there any time soon.

3. I accidentally posted something really vulgar to Facebook. I'm not going to repeat it here, but suffice it to say that if anyone who didn't know me read the post, they now have a very interesting opinion of me. That could be sort of fun, come to think of it. The best part was that it was up for an entire 24 hours before I realized the unintended double meaning, so there was plenty of time for all of my Facebook friends to see it: My mom, my dad, my mother in law, my nieces and nephews, the local leaders of my church, my perverted friends... There are now 293 people I will never be able to look in the face again.

I have a huge list of other things I did this week, but this is getting ridiculously long. I'm going to stop for now but will probably post more another time, because this stuff is just too embarassing to keep to myself.

Tuesday, June 8, 2010

ADHD is a Four Letter Word

I was a geek when I was in school. Dork, nerd, dweeb, goober, weirdo... whatever you want to call it, that was me. I'm sure this comes as a surprise to absolutely no one. I was the overachiever poster child and I actually wanted to be teacher's pet. I lived to please and worked very hard to do my homework correctly and get it in on time. Unless I was procrastinating, but that's another story.

You can imagine how popular I was.

So anyway, dorky overachieving is all that I know, and I guess I just assumed my kids would follow in my unfortunate footsteps. But you know what happens when you assume...

Which brings me to Kaitlyn. I'm having a hard time writing this, because in many ways she is the hardest working and most determined person I know. Unfortunately, that work ethic does not extend to school. When it comes to school, Kaitlyn is Ted. Of Bill and Ted. If you haven't seen that movie, I highly recommend it. It's hilarious.

To be fair, the challenges she has with school really aren't her fault. You see, she has this terrible, nasty, debilitating condition called Attention Deficit Hyperactivity Disorder. ADHD for short. You may have heard of it, but don't worry if you haven't because it's pretty rare. Ha ha ha.

In my blissfully naive pre-children days, I was positive ADHD was a made-up disorder that encouraged lazy parents and teachers to give little Johnny Rocket a get-out-of-jail-free card. I treated people who believed in the disorder with disdain, basking in the knowledge that my children would be much better behaved than these monsters because I would have superior parenting skills. As long as you discipline your children with love, they will be the model of perfect behavior.

All I can say is that if this is your attitude, repent and do it NOW. It's too late for me, but please, for the love of Pete, save yourself. If you don't, you WILL be humbled.

ADHD is real. And it's horrible. In fact, I'm considering bringing charges of false advertising against the person who named the disorder because the term ADHD sounds much too innocuous for this dread disease. It would be more appropriately named Stare-off-into-oblivion-even-though-the-teacher-is-three-inches-from-your-face-Jump-up-and-down-on-your-chair-Slug-whoever-happens-to-be-walking-by-just-because-you-want-to-and-Never-once-voluntarily-bring-your-homework-home-from-school Disorder. Or for short, A Quick Way to Drive Your Parents to the Brink.

If school were Super Mario Galaxy 2, we would have no problem. But life is not a video game. Life requires sitting still, paying attention, listening carefully, waiting your turn, and actually doing what your parents and teachers tell you to do. Without these skills, or at least a smidgen of these skills, there is little chance a kid will be successful in school. Unfortunately, these are the exact things that are difficult for the poor kiddos who are affected by ADHD. It's not that Kaitlyn doesn't want to concentrate and sit still, it's that she can't. Plain and simple. And if you don't believe me, you only need to spend a few hours in the afternoon with her and I promise you'll become a believer. Let me know when you're ready and I can send her over with her list of spelling words.

When my daughter was diagnosed with 18 Q Deletion Syndrome, we were given a laundry list of issues we should be prepared to handle. Among them were hearing impairment (yup, she's got it), mental retardation (nope), delayed social skills (yup), learning disabilities (yup), little or no ability to communicate either through spoken language or sign language (nope), autism (jury is still out), inability to walk (nope), and a weaker than normal immune system so she will host every bug that comes within a 10 mile radius of her (double yup). These, along with many others, were the things we were prepared for. What we were NOT prepared for was ADHD.

As odd as this may sound, this is possibly her greatest challenge in life. No, really. I feel so bad for the little munchkin - she loves to learn and has an aptitude for reading and science, which is amazing and wonderful. But she just can't concentrate when the teacher is talking, and thus misses 90% of the classroom instruction. I don't have to tell you how detrimental that is to her, and how frustrating it is to her teachers.

We've tried just about everything. We went the "natural" route by treating her with supplements and the Elimination Diet (google it), we tried behavioral intervention with two different therapists, and finally we pulled out the big guns and tried prescription ADHD medications. By the time we got to that point we were desperate and would have chanted naked under the moonlight in old man Tucker's corn field if the doctors told us to. Fortunately, they didn't. Unfortunately, and to our great disappointment, the medications made the problem worse. If you read the 10 page booklet of instructions that comes with your prescription, you will find a list of very uncommon side effects. 'Very uncommon' means that typically less than .5% of people taking this medication will experience whatever the side effect is. One of these rare side effects, and this is true of all ADHD medications, is extreme agitation. And, you guessed it, we pulled the short straw. We tried several different classes of medication, and they all had the same effect. Which definitely wasn't good. The lowest point was when we went against our better judgment (I'm telling you, you shouldn't doubt mother's intuition) and increased her dose because her doctor promised that increasing it would decrease her agitation. Instead, our daughter experienced a screaming, raging tantrum that lasted nearly 24 hours. After several calls to her doctor and a trip to the ER, she finally calmed down and went to sleep. We threw the medication in the garbage (wrapped in a dirty diaper to ward off pilagers) and never looked back.

Unfortunately, this exhausted our options for treatment. We haven't been able to find anything that helps her focus, and because of that her school work, homework, and social skills continue to suffer. So for now, we do our best to be patient with her and help her work through this challenge while we wait for science to catch up and discover something new. And we wait. And wait. And wait.

Come to think of it, maybe that's how I'll make my millions - by curing ADHD.

Nah, sounds like too much work.

Did I mention that I was diagnosed with ADHD a few years ago? I told you, repent NOW. Karma will really bite you in the behind.

Monday, June 7, 2010

You Know You Have a Child With Special Needs If...

Wow. My first post. I tried hard to make this witty, touching, and insightful, so you'd get a glimpse of the wonderful things that are to come.

Unfortunately, you'll have to settle for whatever came out of my mouth at 12:22 a.m. Please come back anyway.

In the spirit of the thousands, nay, millions, of emails that are circulating with hilarious lists of things that describe some aspect of who you are (You Know You're a Child of the 70s If... you remember the alternate lyrics to the Dee's theme song! HAHAHAHAHAHAHAHA!), I'm going to create my own list. Because we can always use another one.

And if you don't remember the Dee's theme song, or have no idea what Dee's even is, I'll post the lyrics after my awesome list.

You Know You Have a Child With Special Needs If:

1. You panic when you leave the house without your phone because you're going to miss all the reminder calls for your child's upcoming doctor visits, which you wrote down on a receipt from your purse and then promptly threw away.

2. Even though you threw away the receipt that had the doctors' appointments on it, you still have a receipt in your purse from a random trip to the grocery store in 2003. Along with other miscellaneous garbage that will never find its way out.

3. You ask, "Now which clinic is this?" when the receptionist calls to remind you of the appointment. Even though you've been taking your child there regularly for 8 years.

4. Your child has 22 specialists and since you can't remember what any of them do anymore, you hope to get clues as to their specialty by observing the other people in the waiting room.

5. Your pharmacist not only knows you by name, but knows which prescription you're there to fill.

6. You lobby for a punch card so after your 10th appointment the 11th is free.

7. You have your own personal advocate with the insurance company and they call to see if everything is ok if they haven't heard from you in a while.

8. Even though you spend a third of your life in doctors' offices, you haven't had a physical in 6 years because you don't think of scheduling an appointment for yourself and after a while, they stop calling to remind you.

9. Ditto the dentist.

10. You rejoice the first time your child talks back to you.

11. You rejoice when your 7 year old goes pee pee in the potty.

12. You have a t-shirt printed with the words: Yes, I know my child is having a tantrum and no, I don't care.

13. You have another one printed with the words: I'm sure you would do a better job than I do. Why don't you take him for a week and show me how it's done?

14. You wear one of these shirts every time you visit the inlaws.

15. Every time your mother in law opens her mouth, you point at the shirt.

16. You know what IDEA, IEP, 504, FAPE, and LRE mean.

17. You've had more than one conversation that begins with: I'm sorry my child won't stop saying, "My mommy makes me eat my boogers!" I don't know where he got it and I don't know why he won't stop. Please don't call DCFS.

18. You're trying to figure out how to get a refund on your ticket to Holland, because when you come right down to it, the canals of Venice are much cooler than clogs. And tulips. And windmills. But Rembrandt is pretty cool.

19. You become a soggy, weeping puddle when you hear the song "Wonder" by Natalie Merchant.

20. You get teary when you see a little girl skipping down the street.

21. You can identify every single train from the Island of Sodor and know the purpose of each one.

22. Although you wouldn't have chosen this, you thank God every day for the ability to experience life through the eyes of a child who will never stop delighting at watching the ants that are walking across the kitchen floor.

If you said yes to 5 or more of these, hide yourself in the laundry room and take a nap in the middle of the pile of dirty clothes stacked on the dryer, where they can't see your feet. You deserve it.

Original lyrics to the Dee's theme song:

Goody box, goody box, good-goody-goody box
A big, juicy burger
A bag full of fries
An ice cold drink
And a surprise

Alternate lyrics:

A big, juicy booger
A bag full of flies
An ice cold *censored*
And a surprise (said while raising eyebrows up and down)

Link to lyrics to Wonder by Natalie Merchant: