Tuesday, September 29, 2009

What a crapweasel

I am absolutely stunned and mortified that there are so many people in this country who believe that Roman Polanski is a victim. Are you kidding me?? I am speechless - which anyone who knows me, knows, is very rare. Have we, as a society, become so impressed with "famous people" that we give them carte blanche to do whatever they want? Even if that means raping a child - yes - a CHILD!! Am I really supposed to feel bad for him because he wasn't allowed to pick up his Oscar in person? Disgusting! At least there are still some rational people who see Roman Polanski for what he really is...a crapweasel!

Saturday, September 26, 2009

Guest blog - Oscar the Grouch

Hey everyone. I have a treat for you today...a guest blogger. He is the smartest, funniest, kindest man I have ever met - my husband.


Do you have a favorite Sesame Street character? I bet there's a Facebook app that asks you 10 dumb questions and then tells you whether you're Bert or Ernie. I don't need the test - I'm an Oscar guy. Elmo is endearing, Grover is amusing, but Oscar gets it. Even in the peaceful world where muppets, monsters, and people live in harmony, he sees the world for what it is. Even when he sings out loud, sings out strong: "Grouches of the world unite! Don't let the sunshine spoil your rain...just stand up and complain!"

Maybe that explains my deep down, unstoppable, undeniable love for the blogger herself. You see, this note isn't about a grouchy guest blogger, but rather about his grouchy wife - and why her griping is appropriate and healthy. In fact, I think it's the key to her fundamental happiness.

I don't know why it's considered a core virtue to suppress pain. I am always puzzled when someone passes away, and the eulogy includes the inevitable praise for the deceased having suffered in silence: "...and even after Gertrude lost her eyesight, and could no longer read while she lay in her iron lung, she never once complained, and always greeted others with a smile."

I guess it's cultural, part of the American can-do ethic that broke the British during the winter at Valley Forge, then tamed the Wild West, and kicked some Nazi butt for good measure. If Laura Ingalls can survive the tough Minnesota winters in her little house on the prairie, then you need to suck it up, too. Cowboy up!

What a ridiculous attitude this is. No one likes the non-stop gripers - I get that. But I suspect that the real reason that people are so quick to offer up praise for those who "never complain" is that it spares them from feeling bad. In other words, if you are in agony, keep it to yourself...so that I don't have to suffer, too.

But what are friends for if not to comfort you during the rough times - even if those rough times last your whole life? (Then again, except for Katie, I don't really have any friends, so I'm not sure that I'm qualified to give advice in this respect.)

One final point: I don't think you need a doctorate in clinical psychology to recognize that it just can't be healthy for someone to suppress their challenges. Raisin in the sun, you know?

As the person closest to the situation, I can report honestly that our lovely Katie manages the contradiction well. She is just grouchy enough to stay happy.

So if you're reading this while in an iron lung, feel free to mention how much it sucks. Whomever you tell may feel a little worse, but you'll feel a lot better. And when you've been dealt such a rotten hand, that seems a fair tradeoff.

Monday, September 21, 2009

Shame on them!

One of the most frustrating things about having children with Autism is having to constantly fight for things they need. You have to fight with school districts - you better hope you know your rights because they aren't going to give you a piece of paper titled: "Things we have to provide for your child" - and you have to fight with insurance companies - most of the time I swear they are just trying to give you the run-around long enough that you just give up.

My most recent fight has been raging on for over a year now. My son uses a speech generating device (SGD) to talk for him since he can't. He can say a few words but even those are unclear to most people who aren't around him all the time. In general, he needs the device to communicate his basic needs and wants effectively. We were able to convince our school district to purchase one for him to use but they own it. This means if we ever leave the district the device doesn't go with us. We were advised by Will's speech therapist to obtain his own speech device through our insurance company since we are unsure of how long Will might require this assistance. And thus began the fight.

Appeal after appeal has been denied but the most recent refusal was the most hurtful. In this denial letter the insurance company actually states: "Devices such as this would not qualify as Durable Medical Equipment as they could be used by anyone in the family much like a blood pressure cuff." A blood pressure cuff? Are they kidding me? Have they even taken the time to research what exactly this device does? It is a relatively small device with a touchscreen with picture icons on it. You touch a picture and it speaks for you. Will's SGD would be of no use to anyone except him. I'm pretty sure I don't need to touch a picture of a toilet to have a machine say: "I need to use the bathroom." This letter was both ignorant and insulting. How dare they make light of the fact that my son needs a machine to speak for him. Shame on them!

Thursday, September 17, 2009

Solving the Puzzle

As I've mentioned before, my son attends the Cleveland Clinic Lerner School for Autism in Cleveland, OH. It is an amazing school with an outstanding reputation for helping children with Autism reach their potential. But how? I could talk about their curriculum which is highly individualized to truly meet each child's educational needs. Or I could talk about their state of the art facility which was designed specifically to address these children's sensory needs. But the real reason these children make such progress is because of the dedicated therapists that work with them daily.

My son goes to school year-round - which means his CBTs (classroom behavioral therapists) work year-round too. Lets be clear...their job is not a walk in the park; in fact, they probably deserve hazard pay. Many of these children, like my son, suffer from extreme behaviors brought on by frustration and anxiety. Behaviors like: screaming, biting, hitting, pulling hair, scratching, kicking...you get the idea. This alone would scare off many educators, but not these therapists. They understand these children. They understand that all behavior is communication and they are determined to give these children a more appropriate voice. The level of care that they show is genuine and their dedication is endless. They work tirelessly to implement one strategy after another until they find the one that works for their student, knowing that these children have tremendous potential if given the right tools.

In the Autism community we use puzzle pieces as symbols for Autism. The Autism Society of American explains that: "The puzzle pattern reflects the mystery and complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope—hope that through increased awareness of autism, and through early intervention and appropriate treatments, people with autism will lead fuller, more complete lives." As I watched my son walk into school today with his favorite therapist, Frank, I couldn't help but think that these are the people that are actually solving the puzzle - even if it is only one piece at a time.

Tuesday, September 15, 2009


Imagine you are out shopping with your best friend. You are chatting away as you wait in line to check out. It is finally your turn and the cashier says: "Good afternoon." You continue talking to your friend as if the cashier has not said a word. You place your items on the counter and continue chatting while the cashier quietly rings up your purchase. She tries to get your attention to tell you the amount and you continue talking while you hand her a credit card. Again the cashier quietly processes your charge and hands you the slip to sign. You quickly sign the credit slip as you laugh hysterically at something your friend has just said. Without stopping your laughter you grab your copy of the receipt along with your bags and walk out of the store with your friend.

Right now you are probably thinking - no one would do that - but they do. I am currently working part time at JoAnn Fabric to fill my day in Cleveland while my son is in school at the Cleveland Clinic Autism School. Every day people go through my check out line while talking on their cell phone and act like I am a non-person. I will complete an entire transaction without so much as a word from them because they are too busy talking to someone who is clearly more important than me. Make no mistake - this is RUDE! I am a person too.

Saturday, September 12, 2009

Peace and Quiet

Quite often at the end of the day, when you reflect back on everything that has happened, you realize - this was a good day. It's a great feeling. But every once in a while, if we are lucky, it doesn't take "reflection" to make us come to this realization; instead, we pause, look around us and know that we are experiencing a great day. Today was one of those days for me.

Even though Bill and I had just wrapped up a hectic week we decided to take the kids on a special outing. Every summer we visit Rolling Ridge Ranch, and take the children on a covered wagon ride through 80 acres of breathtaking land filled with animals from around the world. The ranch is located in the heart of Amish country and is actually owned and run by the Amish. During the 45 minute drive it took us to get there this morning, we slowly left behind the insanity of suburban USA and entered a world filled with rolling fields and horse-drawn buggies. By the time we reached the ranch I was already starting to feel more relaxed and opted to leave my cell phone in the car, unwilling to risk an interruption into this tranquil world I had entered.

With great anticipation we boarded the large horse-drawn covered wagon and began our ride. For the next hour we rode through beautiful countryside where we fed Zebras, Llamas, Ostriches, Camels, and the list goes on. It was truly rejuvenating. The air was fresh and quiet and my family seemed truly peaceful. The elderly Amish gentleman who was driving the wagon told me that this trail has a powerful impact on all of its travelers. Many a person starts the trip off "grumpy" and quickly becomes peaceful and content.

Maybe part of the reason is the simplicity of nature or maybe it has something to do with the Amish themselves and kindness that they exude. When we were almost finished with our tour the driver said to me affectionately with a nod towards Will: "I have a 36 year old disabled son." This kind little gesture started a brief conversation about our special children that left me with a surprising realization...my life may be nothing like this Amish man's, and we may have very different values and beliefs, but we have one very important thing in common - we are both parents that love our children unconditionally and completely.

Now, I don't want to overstate the impact this trip had on me - I'm not planning on converting my family to Amish - but it was definitely a much needed break from the chaotic life that we live day in and day out. It was nice to slow down and just enjoy nature's beauty with the people I love.

Thursday, September 10, 2009

Thanks for nothing!

I stopped at Whole Foods this morning to grab a few Gluten & Casein Free items for my son, but all the handicapped spots were taken. Let me start by saying that I don't always use these spots because there are many individuals with more severe disabilities than me that might need them. Whether or not I take a handicapped spot all depends on the weather; how my leg feels on a given day; and whether I am shopping with my little ones (walking in the parking lot is unsafe because I can't catch the kids if they try to run away and they don't know to stop - parking as close to the door as possible is best).

Today was one of those not-so-rare days when my leg wasn't fitting so well & therefore was uncomfortable and less stable (I stumbled several times this morning before I even left the house). I wanted a handicapped spot to reduce the amount of walking I would have to do but there weren't any available. I went ahead and parked and did my shopping. On my way out of the store I saw a woman get into her car, which was in a handicapped spot. I was furious. I couldn't see anything wrong with this woman except that she was quite overweight. Get ready 'cause here comes my rant...

It is amazing to me how many people have handicapped plaques because they are overweight. I don't care if this is "politically incorrect," but obesity should not earn you a handicap spot. Except for extremely rare glandular conditions, obesity is self-inflicted and completely curable. Step one: park a few spots back in the lot and WALK. I'm not trying to be mean, but these spots should be reserved for people with real disabilities. When I first lost my leg and the doctor said he would write a prescription for a handicapped plaque for me, I was horrified. I said I wasn't going to be using it...I was proud and naive. I quickly realized that there were times when parking close to the door was necessary (plus, lets be honest...I should get some perk after lugging around this metal leg day after day).

But it doesn't stop there! What about elevators? The level of laziness in our society is ridiculous. Stairs are a big challenge for me, but impossible for someone in a wheelchair. During my six months of chemotherapy I was in a wheelchair, unable to have a prosthetic leg. For our anniversary Bill and I visited the Tower City Center in downtown Cleveland, so that I could get out of the house for the day. As we approached an elevator a family stepped in and Bill yelled: "hold the door." The family just stared at us as Bill quickly pushed me towards the elevator. As the doors began to close without any assistance from the elevator occupants - Bill hollered: "Thanks for nothing!" In that instant I felt so devalued. Here were able-bodied people who were given the opportunity to help me and they were just too lazy.

O.K. I'm done ranting...for tonight

Tuesday, September 8, 2009

Would you choose Autism?

With fall fast approaching I've already begun thinking about Christmas gifts. I know it sounds crazy but when you have as many people on your shopping list as I do you have to start early. I received an email advertisement from Cafe Press (I love this site) regarding free shipping on all custom t-shirts, so I thought I'd look for some Autism shirts for my son's teachers. If you do a generic search with "Autism" the results are staggering. There are countless t-shirts, hats, stickers, bags, etc...with Autism related slogans. What struck me time and again though were the shirts with messages saying we should embrace Autism and not try to cure it - like: "Autism: Something to be understood, not cured." ARE YOU KIDDING ME?!?

Sadly, there is a growing number of people that believe that Autism is who a person is and therefore is not something we should try to change. For the many caregivers of individuals with Autism, I can only imagine that this is a coping technique that allows you to make it through the hard days. I can't believe that a rational person would look at someone they love who is suffering - and I choose that word intentionally because I have seen my two children suffer - who would look at someone they love who is suffering and decide that Autism is who they are and not something to eradicate? I can't, for the life of me, understand this way of thinking. And to those individuals with Autism who have voiced this same opinion of acceptance instead of intervention, I mean no disrespect, but the mere fact that you are able to voice this opinion puts you in a different category than my son who cries and becomes aggressive out of frustration because he is unable to voice his wants and needs. Who would choose that? Who would choose to be unable to communicate when they are in pain? Who would choose to be unable to care for themselves in adulthood? Who would choose to be a teenager who still needs to wear a diaper? Who would choose these things? NO ONE!

I'll tell you what I know about Autism: it is a destructive neurological disorder that left untreated, ruins lives. It is not something to embrace nor is it something to accept. Autism claims 1 in 150 children born today and it needs not only our attention, but more importantly our action.

Saturday, September 5, 2009

That Sucks!

For such an advanced - intelligent - and adaptive species, our brains can really be stupid some times. I have the worst phantom pain tonight that I have had in probably 2 months. I keep getting these "jolts" that feel like someone is electrocuting my foot THAT ISN'T THERE!! Do you know how frustrating that is? I don't know why my brain has decided to go haywire tonight...could be because I'm overly tired (we had a good evening with the kids at the county fair); could be because I've been insanely stressed lately with the upcoming move; or it could be that someone from my past is sitting with a voodoo doll of me - thrusting a pin in the foot over and over again (whoever you are...thanks a lot). I don't know the reason the pain is so bad tonight, and I don't care. All I care about is that it HURTS like crazy and there is nothing I can do about it but wait it out. I'll admit that I am usually not one for pity parties but tonight I think I need a collective: "that sucks!"

Wednesday, September 2, 2009

Stranger slaps crying toddler

O.K. so we've all been in the grocery store before when there has been a child that just can't be consoled...tears and loud wails ring loudly throughout the store. Most of us Moms have also been the parent whose child is the one causing this chaos. It happens. Little ones get upset and sometimes nothing will calm them down until they are good and ready. It is frustrating as the parent of the cranky child and annoying as the fellow shopper but no big deal. A few dirty looks and possibly an under-the-breath rude comment about your parenting style is all you usually have to worry about, but a Mom in Georgia actually had a stranger slap her child? I'm not making this up - read the CNN article. The Mom was shopping with a crying toddler when a man came up to her and told her if she didn't make her kid stop crying he would. The Mom proceeded with her shopping, mistakenly thinking these were idle threats. The man approached her in another isle and grabbed her crying 2 year old and slapped her 4 times across the face, stating: "See, I told you I would shut her up!" JAW DROP!! I read this article and was stunned & curious. What did the mom do? Did she grab the toddler back and start crying herself? Did she go crazy on the man - giving him a good slap? Did she run in fear? What??? First of all, you just CAN'T hit someone else's child - period! Second of all, is this man crazy? Doesn't he know how protective and insane we Moms can become when we feel our children are in danger? Even the sweetest, mildest woman can become venomous while protecting her little one. So for me, the story was shocking, but I can tell you with complete certainty that if this story had been about me the title would have read: "Local Man is Hospitalized After Sustaining Serious Injuries at the Hands of Angry Mom."