Thursday, December 31, 2009

My new leg

The process of getting a new artificial leg is just that - a process. You can't just buy one off a shelf or order one online. One has to be made for you. That's why I have been putting it off for a long time. My old leg didn't fit right at all anymore so I had lined the inside with countless band aids to help with the discomfort; the outer support liner was cracked so I had wrapped duck tape around it to keep it together; and the computerized knee was making weird noises...sometimes refusing to charge at night. It was a wreck but I had adapted. That's what I do.

Now don't judge. I wasn't being lazy by putting it off. The process is so time consuming, and anyone who knows my life knows that time is one thing I DO NOT have. You have to start with an appointment where they make a mold of your residual limb (not a quick appointment). Then you have to go in for an appointment where you try on a "test socket." This test socket is a very hard clear plastic material so that they can see your leg through and look for air gaps. Since my leg is held on by suction it has to be air tight. This appointment is even longer than the previous as they mark the leg then take it in back and cut & mold it - then you try it on again and they mark it get the point. Next, you go for the "final fitting." I say "final" because it's never the final appointment. During this appointment they have your actual leg all done and they only do minor tweaking of alignment and fit. Then you wear it home. Usually after a few days of wearing it you realize what's not quite right and go back in for more alterations.

You get the point. Deciding to get a new leg takes a pretty big time commitment. Well, long story short - too late, right - I got a new one and it is pretty cool. I designed it myself. I gave my prosthetist fabric with puzzle pieces so that they could fuse it into the plastic - a permanent union of the two things in my life that cause me daily struggles: amputation and autism. Since I didn't really feel like posting a picture of my mother-of-two body in a bathing suit so you could see the leg, I just took a picture of it by itself. Awesome, right?

Tuesday, December 29, 2009

What really matters

With Christmas behind us it is easy to feel a certain amount of sadness. All of the anticipation we feel as we get nearer and nearer to the holidays creates a bit of a let-down when they are finally behind us. For me, Christmas is my favorite holiday. Not just because of all the gifts; although I do really enjoy getting presents, but because of the time I get to spend with all the people I love. There is nothing in this world that is more important to me than my family. They have been through so much with me and love me unconditionally. I am truly blessed. So this year I am going to remain happy despite the fact that Christmas is over because the real joy of Christmas for me doesn't end with the decorations coming down - the real joy is my family and they are with me all year long. So look around you and realize that the "holidays" don't have to be over for you...make a commitment to spend time with those you love all year long. As a little fairwell to Christmas here is a video of the "Wright Family Grandkids." Enjoy!

Monday, December 21, 2009

I have got to be the WORST blogger ever!! I haven't posted anything substantial in forever. We are finally all settled in to the new house - I LOVE it. So here's my big news...we got a dog. Just what my insane life needs right? Here's what happened:

Let me make a very long story short...a coworker from JoAnn Fabric got evicted and had to get rid of his 11 month old chocolate Lab puppy. He was going to take him to the pound -- nuff said?? So now I have a new puppy named Sebastian. I went to pick up the dog and he was gorgeous! Very playful and sweet. It was love at first site...until I got him home.

We got home and I put his leash on him before getting him out of the car. He was acting very skittish but I figured he was just nervous about the big change. I walked him into my garage and hit the button to close the door -- it's a habit. He freaked out and lunged backwards pulling the collar right over his ears and off his head. He bolted out of the garage as the door slowly went down. I was stunned for about 5 seconds until I realized: "crap...I've gotta catch this dog before he gets hit by a car or totally lost." I bolted down the driveway after him - well, I don't know that bolted is the exact correct term for how fast I can move with my leg, but I was definitely going as fast as I can go. I was yelling at the top of my lungs for Sebastian - giving the neighbors a great show.

Sebastian was sprinting around the front lawn - luckily not running out into the street or too far away. It had snowed so he was slipping and sliding all over the place (tearing up my neighbors yard - whoops). He wouldn't come to me! He was terrified. I finally remembered that his previous owner had given me some treats for him so I hustled back to the car to get them. I'm not exaggerating when I say it took me 10 minutes to get this crazy pup to inch up and take a treat from me. I slowly slipped the collar back on his neck. Victory was mine!!

I finally got him in the house (he refused to go in the garage) and then realized that he was covered in mud - this day was getting better and better. Luckily he let me wipe him up before he went tearing around the house.

He has settled in some but is still the biggest fraiddy cat dog I have ever met in my life - poor thing is terrified of his own shadow - literally. For the first 2 days he growled at his own reflection in the sliding glass door:-) Still, getting Sebastian feels like a step towards having a "normal" family. So, say hi to the newest member of the Cunion family.

Sunday, December 6, 2009

The Real American Idols


So yesterday I took a break from all the moving nonsense and travelled to Columbus, OH for a cheerleading competition. As I've mentioned before, my daughter belongs to a special needs cheerleading squad called the American Elite Idols. These kids practice every week with more dedication and enthusiasm than most of their typical peers despite how mentally, and often physically, demanding it is. The competition yesterday was not just for special needs teams. There were squads competing that were doing stunts and tumbling that you would see on ESPN. It was amazing and our kids were so excited to be a part of it. When it was finally our turn, the crowd was amazing. It was a packed house and our precious Idols received a standing ovation. I was so proud and thankful that this audience was proud too. Watching the kids get their trophies was one of those moments when you take a snap-shot in your mind. The pride that was on each of their faces was priceless.

Saturday, December 5, 2009

I'll be back soon

Hi everyone. For those of you who actually check my blog on a regular basis...sorry I haven't written in a while. I have been in the middle of moving hell and I'm not out yet. I'll be back soon so check back again.

Monday, November 23, 2009

With a bah bah here and a bah bah there

My son recently decided that it is hilarious to listen to me make animal sounds. Since I am always eager to reward his attempts at communication, his request of: "mama, bah bah," is quickly rewarded with my best impersonation of a sheep (and yup, I do a pretty good bah bah). The problem is, Will doesn't just want me to do one sheep impersonation...he wants me to do one sheep, then 2 or 3 chickens, then a monkey, then a cow, then 3 or 4 get the point. His delight doesn't diminish. No problem - again, I aim to please - and besides, its just the two of us in the car on our long commute to and from school each day - perfect time for me to perfect my horse winnie. I think I would do just about anything to hear that child laugh because it is truly infectious. But what about when it isn't just the two of us? Time to get creative. This afternoon on our way home from Cleveland I was on the phone (and not with family or friends) and his little voice came from the back seat: "mama, buh buh." This means I am suppose to cluck like a chicken. I tried to ignore it. A little louder this time: "mama, buh buh!" For those of you who really know me, what do you think I did? That's right - I tried to cover the microphone on my cell and as quietly as possible, I did my best chicken impersonation. There was a slight pause on the other end of the line as the person tried to figure out what they just heard. I, of course, acted like nothing had happened and went right on with the conversation. So, if you happen to be on the phone with me in the near future and think you hear animals in the background, don't be alarmed, its just me, and no - I haven't lost my mind - I'm just doing my best to make my little man laugh.

Friday, November 20, 2009

I Loooooove Santa

Jessica came home from preschool the other day and informed me that Swiper was on the naughty list and wasn't going to get any presents from Santa. For those of you without little ones, Swiper is a character on the Dora the Explorer show. He is a fox who is always swiping things from Dora - he's very naughty. They must have talked about him during story-time that day. Jessica went on to declare that she was on the nice list. It didn't occur to me at that point, what a goldmine this was. I began incidentally reminding her, during bouts of naughtiness, that Santa was watching. She would pause and declare that she was on the nice list. She clearly understood that the naughty list equalled no presents but she wasn't grasping the concept that Santa could see her.

Then it happened - I had a brilliant idea. We were getting ready to go to cheerleading practice and she was being ridiculously uncooperative. For the last several weeks she had been terrible at cheerleading: refusing to practice; flopping on the floor; running across the gym and refusing to stop; in general, wreaking havoc during the entire hour long practices. Each week I walked out exhausted and frustrated. I knew that most of this was a result of her Autism and had become a ritualized habit, but I also knew that she was capable of better behavior than this. This is a cheerleading squad for special needs kids but she was the worst behaved one BY FAR. I had been toying with the idea of letting her quit but she loved it the first few weeks and I hated to see her quit just because she had recently decided that it was "too hard." On this particular evening I was at my wits end. I knew we needed to get out the door soon or we would be late but she refused to cooperate: kicking her shoes off after I put them on; flopping on the floor when I tried to pick her up; and finally declaring that she "wasn't going" (with a stomp).

I grabbed a notepad off the kitchen counter and wrote "naughty" at the top of one column and "nice" at the top of the other. I then said: "Jessica, this is a naughty or nice list and Mommy is going to mail it to Santa." She froze mid tantrum. "I'm on the nice list," she declared. I informed her that just wanting to be on the nice list wasn't enough - she had to act nice. I went on to explain that every time she acted naughty I was going to put a mark on the naughty list and every time she was nice I would put a mark on the nice list. She listened intently - clearly sizing me up to see if I was serious. I then told her again that it was time to go to cheerleading. She screamed and flopped on the floor. I said: "naughty" and made a dramatic mark on the naughty column. She screamed in terror: "NO! I want to be on the nice list." I explained that she needed to act nice to be on the nice list.

Long story short (too late, I know): she had the best practice ever. She tried to follow directions and truly had a good time. Throughout the practice I gave her occasional "nice" marks to reinforce her desired behaviors and she didn't have one tantrum. At the end of the practice, with a huge smile on her face, she told me she had fun. I was so happy. I knew that she would enjoy herself if she just let herself.

The naughty or nice list is still in effect and hasn't lost its potency. Each night we count up the tallies to see if she gets a naughty or nice mark for the day on the big chart I created. She is so proud of herself for remaining on the nice list and can't wait until I "mail" it to Santa. My only question is...can the Easter Bunny have a "naughty" or "nice" list after Christmas is over?

Wednesday, November 18, 2009

Malibu Barbie

Let me start off by saying that I am a life-long conservative Republican and so the comments that I am about to make about Sarah Palin have nothing to do with political affiliation. My opinions are not based on my allegiance to the political party but rather my allegiance to the "female" party.

When I went to the mailbox yesterday and saw my current issue of Newsweek I had to smile when I saw the picture of Sarah Palin gracing its cover. There she was in all her glory...proudly sporting her tight biking shorts. Great legs, I thought. If those were my legs I'd probably walk around in those shorts year-round. As a woman, I am not offended by Mrs. Palin utilizing her "assets" - good for her. I am not disgusted by the fact that she is a Mom and yet is proud of her sexuality. Again - good for her. But, and this is a big but, you can't have it both ways sweetie. I know this picture was originally shot for another magazine - not Newsweek, but she did pose for it. Her choice, but a choice nonetheless. Many of her critics have argued that she is just a glorified "fluff chick" (and not a very bright one to boot), and that she is only where she is politically, because of her looks. And how does she prove them wrong? By posing in pictures like this.

Again, I have no problem with this picture. I think she is a beautiful woman and if all she has is her looks - than by all means use them. But, if she ever wants to really be taken seriously, than she needs to present herself accordingly. You can't expect to be treated like Professional Barbie and dress like Malibu Barbie. It just doesn't work that way.

Thursday, November 12, 2009

Silent means Silent!

Clip...Clip...Clip...finally silence...slurrrrrp!

O.K. Here's the situation. I am studying this week for my Praxis II teaching licensure exams. I will be taking two this Saturday - back to back. All week I have been trying to study at the Cleveland Heights Library in their SILENT study room, but I have heard just about everything EXCEPT silence.

Day One:

The morning started off nice and peaceful. I had pointed my desk towards the wall to eliminate distractions and the room was nice and quiet. Then again, I was the only one in the room. Everything changed about 20 minutes into my studying. A woman arrived. I waited patiently as she loudly unpacked her laptop and settled in. Finally, silence again, then...clip...clip. I turned my head slowly and stared in amazement as this woman continued clipping her nails. Yep. Apparently she needs a study room to perform self-grooming tasks unlike the rest of us who prefer the privacy of our home. Maybe she just had a hang nail and needed to clip it really quick...clip...clip...clip...nope - she was just rude. It took every ounce of self-control I had to not cross the room and rip the clippers out of the woman's hand and toss them out the open window. I exhaled slowly and returned to my studying.

Silence. How nice. Slurrrrrp....shake....slurrrrp. "I THINK YOU GOT IT ALL!!!" is what I wanted to scream, but I didn't. I got up and went to the ladies room. I'd like to say that the day got better from there, but it didn't. Obviously some people just don't understand the concept of a "Silent Study Room."

Day Two:

Things started off great. There was only one other person in the room with me and he was working quietly on his laptop. I was really getting some good studying done, but then she arrived. A woman in about her 60s entered the room carrying a box and a plastic bag full of papers. She was anything but quiet. I watched her as she loudly unpacked the contents of the box...a desk lamp. What??? Who brings their own desk lamp to the library? It gets better. She plugs it in and the room fills with a quiet, yet annoying, humming sound. She fidgets and fidgets until she apparently finds the perfect placement for this florescent lamp/magnifying glass. Yep, it had a huge magnifying glass attached to it. Kind of cool, but again, who brings this to a library. I figured she must have some pretty important documents she needs to read. Nope! I watched in astonishment as she LOUDLY removed a Walmart sales flier from the big plastic bag and placed it under the magnifying glass. I swear to God I'm not making this stuff up. She had traveled to the library to use the "Silent Study Room" to look at sales fliers with her own lamp!!

I won't bore you with the details of the rest of my week thus far; lets just say that once again, I have concluded that people are completely self-absorbed and rude. No regard for rules. Being silent in a study room clearly doesn't apply to them because they're special. The worst part is, when a room is quiet, every little noise is magnified. Someone clipping their nails; slurping a soft drink; rustling through a plastic bag; or listening to their IPOD so loudly that you can hear the a "Silent Study Room" these noises not only distract you - they consume you. You can't ignore them because they have become the only noise in the room and your brain can't help but focus on them.

So, I'm about to enter the "Silent Study Room" again today and with my current stress level, I hope, for everyone's sake, that people obey the rules and keep quiet. I'd hate to end up on the evening news: "Crazy woman throws chair at unsuspecting library patron as she screams 'Silent means silent!!!!'"

Sunday, November 8, 2009

The highlights

I finally started packing this weekend. It's been no secret how I feel about this move, but like it or not the moving day is fast approaching and these boxes aren't going to pack themselves. Today was a gorgeous day and as I was watching the kids play in the backyard I started to feel nostalgic. We've had so many wonderful times in this house and have created so many amazing memories. My heart felt sad and the feeling lingered as the day slowly slipped away.

After I put the kids to bed I sat down at my computer to blog but I felt in a funk. So...I did what I always do when I need a little cheering up - I started looking at pictures on my computer (I have almost 11,000 pictures on my hard drive). I started feeling a little better. Than I switched to watching old DVD slide shows from previous years. At the end of each year I create a "highlights" DVD comprised of still-shots from that year. It is a nice snapshot into what our year looked like. About half-way through the first one I realized something that I know is going to change my outlook on this move - permanently. All of the amazing memories that we've created have nothing to do with this house; it has to do with all of our family that has blessed our lives so richly. No matter where we call home, that isn't going to change.

So,as I begin working on 2009's Highlights DVD I look forward to seeing how it ends. Despite the change in location, I know the coming holidays are going to be filled with the same love and laughter that comes from spending time with people you cherish.

Friday, November 6, 2009

The Ultimate Sacrifice

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Most of us get to go about our daily lives without ever knowing what it means to truly sacrifice for this great country, but not this little girl.

I am thankful for all the brave men and women who dedicate their lives to protecting our great nation - and to their families who have to wake up each morning wondering if their loved ones are safe.

Thank you! You will forever have my gratitude and respect.

Tuesday, November 3, 2009

I love my microwave

O.K...let me give you a little back-story here:

We sold our house a few weeks ago and started the process of having all the inspections done. First one was radon - we had a very high level - mitigation is costing us between $800 and $1200 depending on whether the inexpensive route brings down the numbers. Next up was the general home inspection - electrical problems were detected resulting in repairs over $400. He also found an abandoned well in our basement that we were unaware of. There is a special way to properly "abandon" a well - that cost another $425. So we exhaled because at least we were done with the insane out flow of cash (at least until closing but let's not go there).

Then, this past Thursday morning my microwave went out. It is a large mounted unit that matches the stove beneath it. Seriously! The stinkin' thing couldn't wait to die until I moved out in a few weeks? We called out a repair man and he informed me that he wasn't sure of the exact cost to repair until he took it back to the shop to take it a apart but he knew it was one of a couple of things with the cheapest being around $180. He said that I could buy a "scratch and dent" that they had in the store for only $199. I asked about installation -- yep, an additional $100. $300 - No way! I said I'd rather fix it, even if it only saved me a few dollars in the end because I'm moving out.

Sounded like a good plan until I realized just how dependent I am on the crazy thing. Yes, I cook, but I also do a ton of re-heating with our crazy lifestyle. The weekend was rough but I figured - at least I will probably have my microwave back Monday or Tuesday...nope. I received a call yesterday from the repair shop and they said that it was "blah blah blah" part and it was going to cost $250 for the total repair. I was annoyed but at least I was still going to be saving $50 by having it repaired versus buying the used one from the shop. I gave myself a little pat on the back and asked when he would be able to bring it back out...he had just ordered the part and it wouldn't be in for 3-5 days! My pat on the back was turning into a kick in the butt.

How did people live before microwaves? Even the simplest of tasks - like making soup - goes from a quick 30 seconds in the nuker to 5 minutes on the stove. Five minutes may not sound like a lot but when you have a child that thinks he is going to die of starvation if he doesn't eat immediately, those 5 minutes become an eternity. I made a roast last night after the kids went to bed for tonight's dinner. I knew that tonight was going to be insane because I would have to run in the door with Will after our commute home from Cleveland and grab Jessica and run back out the door to get her to cheerleading on time in Tallmadge (a 45 minute drive from our house). Sounded like a brilliant plan until I remembered today that the roast would have to be reheated in the oven. Do you know how long it takes to reheat a big roast in the oven? FOREVER!

So what's the point? I have a new found appreciation for my mom -- she had 4 kids and no microwave...poor thing!

Sunday, November 1, 2009


We had our first "peer party" this weekend and it was a huge success! After much thought I had decided to have a Halloween costume party for the kids. We invited all of Jessica's preschool class which consists of other children, like her, who have Autism. We also invited some family and friends to help make things feel a little more familiar. I knew Jessica would be exstatic to have all of her friends at her house but I wasn't sure what Will would think about his world being invaded by a bunch of rowdy, random kids. He did great. Yes, the noise level was extremely high and more than a few times I noticed that Will had his fingers in his ears, but overall he was amazing. No meltdowns. No hiding in his room. He wore his costume without protest and interacted nicely with those he knew. We played games where the children won prizes and we ate lots of yummy snacks. All-in-all a triumph for the Cunion family.

Here's my complaint though...Why is it so hard to RSVP? I had invited 10 children from Jessica's class and only heard back from 3! Since I didn't hear one way or the other I knew I had to prepare for the possibility that they could show up. That meant planning for food for 7 more children and their parents. That meant having prizes for 7 more children (each child won a prize for each game we played). That meant having 7 more treat bags for the kids to take home. I'm not trying to be cheap but it is just plain rude to not RSVP when an invitation specifically asks you to.

The important thing is that the children had a great time and accomplished another milestone: hosting a peer party. Little victories my friends...but I treasure them.

Friday, October 30, 2009

Pint-Size Bullies

"Hey Abigail (name has been changed) - there's a unicorn on the playground. Hurry...come see before he runs away!." Abigail ran to the window and peered out across the playground. Much to her dismay, there was no unicorn; instead what she received was an eruption of laughter as the group of girls who had called her over started retelling the story to the rest of the class.

This story was told to me by Abigail's mother this week. We were discussing how the school year was going for our special children and this Mom was, rightfully so, heart-broken over the pain her daughter endures on a regular basis. For three days in a row last week, Abigail came home in tears after sitting alone for lunch. No one would sit with her or let her sit with them. Abigail is in the 5th grade and has Aspergers (a high functioning form of Autism). She attends a typical school where she participates in a typical classroom. Academically she does great - it's socially where she struggles. Abigail's Mom told me that after the "unicorn incident" she asked Abigail: "Honey, did you really think there was a Unicorn on the playground?" Abigail responded: "No, but I thought 'what if there is?'"

As the mother of two children with Autism, this story hurt my heart. Yes, I worry about the big stuff: Will my son learn how to talk? Will my daughter learn to tolerate change? Will my children become independent adults some day? These questions torture me daily, but just as troubling is the fear of them being socially stigmatized. In some ways, my son has it a little easier in this regard because he has no interest in other children. He wouldn't know if someone was making fun of him nor would he care...I guess ignorance is bliss in this case. My daughter, however, LOVES other children and desperately wants their attention and acceptance. It would devastate her if some mean girls decided that they didn't want to talk to her or manipulated her into doing something that would embarrass her.

Let's be honest - kids are mean. Well, actually, most of them just want to survive and by deflecting attention away from themselves and onto someone else they can escape the pain of being the one that everyone is picking on...but it is still mean no matter what the reason. The realization that there is nothing I can do to protect my children from this, is agonizing. As Mom's we want to fix everything. Give us a problem and we will tackle it with every morsel of energy we have. But what if we can't fix it? Then what?

So, hearing this story about Abigail made me sad and afraid - afraid for my own children and sad because I know that countless children suffer every day at the hands of pint-size bullies. All I can hope is that my children know how much they are loved and trust me enough to come to me with their problems so that I can offer comfort and encouragement.

Wednesday, October 28, 2009

Where The Wild Things Are

Like a lot of parents with small children, Bill and I don't get the chance to go to the movies very often, so when we do, it is critical that we make a good choice. Luckily, we recently chose wisely when we picked Where The Wild Things Are. It has always been my experience that books are much better than the movies that are based on them, but this movie is the exception. Although the book is an exciting tale for young children, the movie is really best suited for tweens and older who can benefit from its brutally honest look into the complexities of belonging to a family. I'm not going to go into much detail first, because you should go see it yourself, and second, because it is way past my bedtime and I need to wrap this up, but I will give this movie my ultimate compliment: I'm so glad I used my movie night to see it!

Monday, October 26, 2009

Being a "Grown Up"

I was flying down the highway this morning on my usual commute to Cleveland - I'll be glad when the drive to Will's school changes from 62 miles to 4...but I digress - I was jamming to my IPOD, as usual, to some Miley Cyrus song (I was channeling my inner teenager), and I it strange that a 34 year old woman is still "rockin out" to music that 18 year olds listen to? Is it time for me to start acting more my age? Than I thought: what does that even mean? Act my age! I'll be honest, I feel the same today as I did when I was in college. Yes, I have WAY more responsibilities and a greater appreciation for what is truly important in life, but I don't feel like I thought I would at age 34. Is that bad? Am I still going to feel like this when I am 44 or 54? I hope so. I still get excited about my birthday. I still get so excited about Christmas morning that I have trouble sleeping on Christmas Eve. I still love blasting a good song on my car stereo and singing along at the top of my lungs. I don't know how to explain it really, except to say that being a "grown up" feels different than I thought it would...and that's a good thing. So, that's my strange thought for the day.

Tuesday, October 20, 2009


We bought a house. I keep telling myself that this is a good thing, and deep down I know that it is, but I'm scared. We have lived in this house since Will was 16 months old -- he'll be 8 in February. It's home. Now we have to start all over making a new house a home. I'm not trying to be overly dramatic. I know it is just a house, but with so much of my family's life revolving around unpredicted changes, it has been comforting to have one constant...our home. We have been spoiled by having all four grandparents close by to lend a helping hand whenever we have needed them (which has been quite frequently). Once we move we will be over an hour away and definitely more on our own.

This wasn't a decision we made lightly, but one that was definitely necessary. Will just started his third year at the Clinic's Autism School and he isn't showing any signs of leaving any time soon. The commute has become increasingly difficult for him. Hours every day that are wasted by him strapped into a booster seat - hours that need to be used for intervention. So I know we made the right decision, but I'm still scared. Scared to leave my familiar lifestyle. Scared to leave our support network. Scared of all the unknowns: Will the new school district cooperate with us in meeting our children's needs? How will the children react to this tremendous change, when they don't even like it if I rearrange furniture? And scared of the new house itself and the challenges it will present to me due to its multiple levels (stairs are not an above the knee amputee's friend and the new house has lots of them).

But...the eternal optimist in me knows that we will be fine. My family is extremely resilient - we'll make this new house a home because it will be filled with love from the second we move in (that and a platform swing that will get hung in the kids' playroom; a ridiculous amount of toys that will quickly fill every available empty space; a huge jungle-gym set that will take up what small amount of green space we'll have, but love is the big one). So, yes, I'm scared about what lies ahead with this move, but I am also confident that we have made the right decision for our family - and that confidence will give me strength to tackle any fears I might have.

So let me start again...

We bought a new house and I am excited about the journey that lies ahead.

Sunday, October 18, 2009

Thanks Allison

Not too many of us can pinpoint one exact moment that changed our lives forever...but I can. For me it was 16 years ago today, October 18, 1993. I was a freshman at Ohio University. I was only 18 years old, with my whole life ahead of me. When I woke up that morning I had no idea that the days events would set in motion a journey that would lead me to where I am today...a happily married, mother of two.

The day started off like any other. I stumbled out of bed (with the help of my handy "alarm clock" - my roommate, Amy) and made my way to my 8 a.m. class - Freshmen English - yuck! After class I grabbed a copy of The Post (our school newspaper) and headed back to my dorm to kill some time before my 10 a.m. Political Science class. I was startled by the phone ringing. I had fallen asleep on the floor while reading the paper. It was my friend Allison. We had Poli Sci together and usually met in my dorm lobby to walk together to class. I told her I was too tired and was going to skip class that day (I think we can all see what kind of student I was shaping up to be but this story isn't about my academic career). Allison, being the dedicated student that she was, tried to convince me to join her for class. Repeatedly I rejected her reasons why I shouldn't skip class. She gave it one last ditch effort with: "Bill is teaching class today."

Bill was the graduate teaching assistant in the class and, like most of the girls in the class, I had a huge crush on him. What can I say - he was older - he was brilliant - and he was adorable. I hustled down to meet Alison and we headed to class. The class was on issues in American politics and that day's subject was abortion. I won't bore you with the details but the discussion got VERY heated. For those of you who know me well, it should be no surprise that I had plenty to say on the subject, and spent most of the hour arguing back and forth with several other students.

Skip ahead a couple of hours...

That afternoon Bill called me in my dorm! I almost passed out. He said he really appreciated my participation in class and wanted to know if I wanted to check out the campus pro-life meeting that was taking place that night. Not the best pick-up line I've ever heard but it sure worked. After the meeting ended he asked me to go get some frozen yogurt & he paid - yep, this was definitely turning out to be a date in my book.

As I sit here typing this blog I can still feel the way my stomach knotted up when he walked me home that night and I'm proud to say that I haven't lost that feeling. I can be having an exhausting day with the kids - feeling about 100 years old - and he comes up behind me and gives me a hug and I feel like that 18 year old girl again. So, tonight I want to say "thank you" to Allison. Thank you for being such a dedicated student and convincing me to NOT skip class that special day.

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 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, 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 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."

Monday, August 31, 2009

The Little Streaker

Just one quick random story...

Today, my son figured out how to take his own shirt off all by himself. He is so proud of himself and has decided that he LOVES nudity! As a result - I have had to put his shirt back on him about 50 times today. About half of those times he also took his pants off so what I saw was a little streaker run through my house.

Hope your day was this good!

Saturday, August 29, 2009


A good friend emailed me a very interesting link the other night and it has stuck with me. The link shows amazing pictures of a 48 year old elephant named Motala receiving a prosthetic leg to replace the one she lost 10 years ago to a land mine. Now, before I proceed with this blog let me be clear about something...I LOVE animals. I was a vegetarian for years until my oncologist told me I needed to eat meat during my six months of chemotherapy. So, I am not one of those people who are indifferent to the cruelties that happen to animals. I am, however, aware that people are more important. I know that sounds harsh, but lets be honest...if a person had an animal in one cage and a person in the other and said YOU had to decide which one lived, I would HOPE you would pick the person.

All that being said, I really do love animals and, as a fellow amputee, I was happy for the poor elephant when I saw the pictures, but something bothered me. I know how much prosthetic legs cost for a person (mine was around $70,000 - thank heavens for insurance) so I can't even imagine how much one would cost for an animal that size. This elephant's was paid for by donations from people who were touched by the story of how this poor elephant lost his leg. It is tragic, I won't argue that, but so many small children every year lose limbs to land mines and this money could have purchased prosthetics for them. Again, I know this sounds harsh, and in a perfect world there would be enough donations for both - but there aren't. Unicef explains that countless children in other countries have to go without prosthetic limbs because there just isn't funding. Although the pictures of this poor amputee elephant receiving her new leg warmed my heart, it left a bad taste in my mouth when I thought about all the poor children who will never get to walk again. So, if you feel compelled to help one of God's creatures walk again, please donate to the Red Cross and help a child gain his freedom.

Wednesday, August 26, 2009

Vaccinate Your Children!

Today I accompanied my daughter to preschool orientation at the local MRDD school that she attends. While the children are off in their classrooms meeting their fellow classmates, we parents attend an informational meeting run by the school principal. Unlike a lot of meetings we adults routinely attend that are a complete waste of time, this "informational meeting" was actually informative. What a shocker!

The principal was welcoming; the speech therapists and occupational therapists were enthusiastic; and the adaptive PE teacher was almost over-flowing with excitement about the coming year...all things you hope to see in people who will be working with your child day-in and day-out. Then the school nurse started her presentation and my great mood went right out the window with the mention of two small words: communicable diseases.

She was showing all of us parents a sheet that might come home with the kids at some point during the school year if our children have been exposed to a communicable disease. She said that the only reason this EVER goes home is for strep throat/scarlet fever because childhood vaccines have gotten rid of the risk for the "major" communicable least that used to be the case. Sadly there is a growing number of people who are deciding not to vaccinate their children. It is no wonder, with the Jenny McCarthy's of the world spouting off about vaccines causing Autism. First of all, let's pretend vaccines caused my two children to have Autism (which there has been NO scientific proof to support this claim) - do you know what is worse than Autism? Polio! But don't just take my word for it - the CDC (Centers for Disease Control) also explains why vaccines are necessary.

Some people ignorantly believe that their decision to NOT vaccinate only impacts their child but that is so short-sighted. My little nephew is only 3 weeks old - too young for vaccines. What if he is exposed to an unvaccinated child who is contagious with a communicable disease? My sister didn't have a choice yet about vaccinating her child - why should someone else get to willfully endanger her child?

So as I sat there in the informational meeting this morning, I wondered whether the nurse's presentation would be different in a few years. Will future parents have to sit and listen while the nurse explains what they should do when the communicable disease sheet comes home with a check mark next to Pneumococcal?

Tuesday, August 25, 2009

Crazy chick on the highway

As I sat here tonight thinking about what I wanted to blog about I started replaying my day in my head. It suddenly occurred to me that someone out there might be blogging about ME tonight.

As I drove the long commute to Cleveland this morning I was ROCKIN'!! Will didn't have school but I was still scheduled to work & a long commute without Elmo DVDs meant I could actually jam to some music. After downing my usual 3 or 4 cans of Diet Mountain Dew I was a ball of energy racing down I77 North. I had my IPOD plugged into my car stereo and was blasting at a deafening level some of my "feel good" tunes. Now, some people might tap the steering wheel along to the beat or bob their head from side to side...not me...I was full-on dancing in my car and loving every minute of it.

Usually my long car rides with Will are a time for me to really think about everything that is going on in my life. As you can imagine, those aren't always the most uplifting thoughts, so on this particular morning I decided I was just going to be happy for the hour and a half that it would take me to get to work. I didn't want to think about the upcoming move or the kids' therapies or the problems I've been having with my prosthesis lately...I just wanted to escape for a little while and maybe give a few passing cars something interesting for once to text about - "just passed crazy chick on the highway." I knew my worries would still be there later but for the time being all I wanted to do was sing at the top of my lungs: "unskinny bop bop bop bop" - yep, Poison was my "happy pill" for the morning.

Saturday, August 22, 2009


We have been looking forward to today all summer...
the BIG horse show. Both of my children ride at a therapeutic horse farm called Pegasus Farms. It is an amazing place and my children look forward to their year-round lessons as the highlight of their week. They had been preparing for today's show all summer, and with the weather cooperating, we had a wonderful day. By the way, both children did really well earning ribbons in all of their events.

The real joy of today though was witnessing all of the dozens of people who all year long volunteer at Pegasus. These individuals are so patient and caring. In today's hectic world it is amazing to me that there are so many people willing to donate their precious free-time to help special needs children gain some freedom. Without these dedicated volunteers, Pegasus would cease to exist. They do it all: clean stalls, turn-out horses, polish equipment, assist riders during lessons, keep the grounds beautifully manicured, and anything else that needs to be done on a daily basis. All of this for nothing more than a "thanks."

So, thanks!

Wednesday, August 19, 2009

The Best Kept Secret

Deciding whether or not to move to a new town, when you have children, involves more than looking at the prices of real estate. You also have to check into the school district. This is usually a pretty easy thing to do - in fact, most good realtors can give you some great insights into which school districts are "good" and which are "questionable." No biggie.

Deciding whether or not to move to a new town, when you have special needs children, involves some real detective work. You see...the "ranking" of a school's special education program is a secret - bet you didn't know that. You can try to ask other parents of special needs children but they are rarely of any significant help. The ones that are receiving exceptional care for their child are usually under a confidentiality agreement by the district to not disclose information pertaining to services rendered. I swear I'm not making this stuff up. Usually the only vocal parents are the disgruntled ones and that isn't always a true indicator of the district's committment to their special needs students. And...if you call the district directly and try to get information you are informed that they can't even have a conversation with you regarding services that they do or do not offer until you have purchased a house in their district (of course by then it is too late to bail if the school is a real dud).

So, as my family begins the process of looking for a new town to move to, I channel my inner Sherlock Holmes and try to gather as much information as I can. But ultimately, I cross my fingers and hope for the best. Wish me luck.

Sunday, August 16, 2009

Happily Married

Before I get started, I want to say how thankful our whole family is that my nephew Owen is o.k. Without going into a great deal of detail, my nephew - who suffers from Autism - escaped from a fenced in yard while under the supervision of a babysitter and made it all the way to a major road before a good citizen stopped and grabbed him. This is one of my biggest fears. My son, like my nephew and a lot of children with Autism, doesn't realize the dangers of wandering off. So, tonight I give a little prayer of thanks that my precious nephew crossed paths with someone willing to stop and help a little child.

Today my husband and I celebrated our 12 year wedding anniversary. I could go on and on about how wonderful my husband is: supportive, loving, sensitive, devoted...but all of those tremendous qualities are not what has made our marriage so successful. We have been faced with more challenges in our 12 years of marriage than most couples face during the entire course of their relationship, and through it all we have continued to make our marriage a priority. We cherish each other and never miss an opportunity to tell each other how much we care. But maybe there has been more...

I can't help but think about how much our families have helped us over these past 12 years. My parents caring for me & my newborn son during chemo so that Bill didn't have to quit his job; watching our children occasionally so that we could go out for a few hours and take a much-needed break; helping financially when the costs of our children's therapies were more than we could manage alone; and the list goes on and on. Maybe we would have been able to weather all of these storms alone, but I'm glad I'll never have to find out. So, today I want to thank my husband for never failing to make me feel beautiful and loved - and thank our families who are always there when we need them to help lighten our load in any way they can. A good marriage requires work and dedication but it sure is a lot easier with the faith and support of a loving and supportive family.

Friday, August 14, 2009

The Bottom Line

Imagine you are told that you have to get to "City XYZ." Getting there is practically a matter of life and death. You ask for a map and are given dozens. Each one offers a completely different route along with a disclaimer stating: "map may or may not lead to City XYZ." But these maps are all you have. Which one do you follow? Even if you pick one and start on your way, how long do you travel on this uncertain path until you give up and try a different map? Imagine how you would feel? Frustrated...afraid...angry...but you can't give up until you reach City XYZ.

This is life with Autism. From the day my son was diagnosed (and then later his baby sister), I have been offered countless opinions on which course of action I should take in treating my children. There is no ONE agreed upon treatment method. You have to use trial & error to see what works for your child since every child on the spectrum is different. Even my two children exhibit different traits and therefore require personalized interventions. So you try something. Then you try something else. All the while knowing that time is the enemy - every day without appropriate intervention is a day lost to Autism - A day your child slips further away from you. Now add to the mix the cost. Can you afford the treatments your child desperately needs?

So why do I bring this up? We need to change the way insurance companies view Autism. Let me take a pause here to be clear about something - I am not suggesting that the government take over health care (I'll save my opinions on that subject for another day), instead we need to fix the current system. Most of my children's' interventions are not covered by insurance because they are deemed "educational" and not "medical." Or, my favorite - experimental. Of course they are experimental. No one has figured out yet how to help our kids!!!! Yes, Autism is in the news a lot these days. There are countless books and interviews about this destructive disorder, but awareness isn't enough. We need action.

If, as a country, we don't feel a call to action due to our responsibility to care for the least of us, we should certainly be called to action because of the bottom line. 1 in 150 children are being diagnosed with Autism. If we don't give these children the help they need to one day become independent individuals who do you think is going to pay to care for them?

Wednesday, August 12, 2009

Little Drummer Dude

Check out this amazing video.

Real Strength

Even though I am the eternal optimist, I still have bad days. Today is one of those days. I've always been the kind of person who is really good at expressing joy, excitement, know, the "happy" feelings, but not so good with fear, depression, despair...the "sad" feelings. Because of this, most people who meet me probably think: "wow, you are so strong - you are always so positive." News flash - I'm not. Today's entry is going to be short and to the point: being strong doesn't mean never admitting that life is hard. It doesn't make you weak to admit that you need help or to let yourself cry when you're feeling overwhelmed. Real strength is admitting that you are terrified of what lies ahead and yet still pushing on. So, let me take my own advice and admit: today I feel overwhelmed. I feel sad about my children's struggles; angry about my own physical limitations; and frightened about the unknown future of my family because of all these obstacles. Today is not a good day - but I am optimistic about tomorrow.

Sunday, August 9, 2009

Big Shoes

Let me tell you a little story...

My younger brother has always been the kind of guy that guys want on their side and girls want on their arm. Extremely handsome, athletic, intelligent, a little hot-headed, but very loyal. As he neared thirty he finally met a woman who calmed his party-boy ways. She brought out the absolute best in him and we all loved her for that. They were perfect for each other: she loved cooking and he loved eating; she loved working out and he had always taken pride in keeping himself in perfect shape; they both loved going out and having a drink but equally enjoyed staying in with a pizza and a good movie...the list goes on. We were all ecstatic when we heard that he had proposed and she had accepted, but our joy was short-lived. Only a few weeks later, while driving home from her apartment, my brother was hit head-on by a drunk driver who crossed the center line. The other driver was killed almost instantly and although my brother's life was spared, he was left with two legs that had been completely crushed. Doctors told us they didn't know if he would ever walk again. Let me stress a point here - we aren't talking about some couch potato here but a guy who participated year round in a variety of men's leagues: soccer, softball, basketball, bowling, etc...a true jock.

With the wedding only 10 months away my brother vowed that he would walk down the aisle with his bride. For the next ten months he endured multiple surgeries to reconstruct his legs and extruciating physical therapy. My parents lived with him for months, helping take care of him and drive him back and forth to appointments, and his dedicated fiancee never left his side. I hate to skip ahead because it really is an amazing story worthy of telling, but since this is a blog and not a novel I'll tell you how the story ends.

Not only did my brother walk down the isle but he also shared a first dance with his lovely wife. I will never forgot how proud of him I was on that day; not because he had walked against all odds, but because he hadn't let such an unfair tragedy ruin his life. He was happy. Truly happy despite the pain I knew he was feeling.

Now, almost 2 years later, they just welcomed their first child - a healthy little boy. As I sat in their house today holding little Paul Sherwood Wright, III all I could think about was the big shoes that little guy had to fill - not because his Dad had once been a great athlete, but because his Dad is a great MAN.

Saturday, August 8, 2009

Hidden Blessings

Although having two children with Autism can be heart-breaking, it has also given me a tremendous blessing that mothers of typical children don't usually receive...the gift of being able to appreciate the little things. Take today for example. We live in Canton, OH which is home of the Football Hall of Fame. This week has been Hall of Fame week with a variety of events taking place, all leading to the big event today - a huge parade. Now for the parents of typical children, deciding whether or not to attend the parade probably involves a debate about weather conditions and general health of the little ones (a sleepless night due to a nasty cold will probably ensure that the family stays home). The decision for my husband and me took a lot more thought. Would the children be able to tolerate the wait since early arrival is crucial if you are going to get a seat with a view? Could my son - who suffers from strong sound sensitivities - be able to tolerate all the loud noises associated with a parade? What if one child loved the parade and the other had a complete meltdown (a true "meltdown" is not easy to handle - especially not in a crowded situtation)? And the list goes on and on. After talking about it all week we finally decided this morning to give it a try....drum roll was GREAT!

We arrived at our waiting spot at 7:30 a.m. and the last police car drove past us at 10:30 a.m...yep, we made it through the ENTIRE parade. Talk about exceeding expectations! On the ride home Bill and I talked about how uninterested most of the crowd around us seemed. I guess in today's high-tech, fast-paced world, most people just aren't as impressed with parades as they used to be. But for us, it was about more than just watching marching bands and large cartoon balloons - it was about participating in life. There we were, standing with the rest of the crowd watching a parade. We were so proud. People around us probably thought I had been hitting the bottle a little early this morning since I was waving and applauding enthusiastically at EVERY float, cheerleader, clown, and old person perched on a convertible. We knew the work it had taken to get to the point where our children could handle an activity like this and we knew that we would remember this experience forever. I sit here tonight and think about today, I feel blessed. Blessed to notice the little things in life that so many people take for granted.


So this is my first blog entry…wow…kind of a lot of pressure. Since I am hoping that people will come back again to hear what I have to say, I really gave today’s comments a lot of thought. What is the first thing I want to say to all of you? What is the purpose of this site?

First of all, let me explain the crazy title of this blog – Phantom Pain. For those of you lucky enough to not know what this term means, here’s how the medical community defines it:

Phantom limb syndrome: The perception of sensations, usually including pain, in an arm or leg after the limb has been amputated. The brain still gets messages from the nerves that originally carried impulses from the missing limb.

Now for the real definition…phantom pain, for me at least, feels like someone is electrocuting my left foot…which is gone! Get that? You literally feel pain in a limb that is GONE! Insane! You can’t think your way out of it no matter how hard you try to tell your stupid brain that there is NO foot there. Luckily, my doctors have found a medication that dulls my phantom pain to a tolerable level – unless I don’t get enough sleep (which, with my two little ones, happens quite often) than no amount of medication can convince my brain that my foot isn’t on fire.

So what does all of this have to do with my blog? Phantom pain is the epitome of life kicking us when we’re down. Life isn’t going to hold back any punches so you have to be ready to fight back. I know that sounds dramatic, but sometimes it really is a fight to remain optimistic about life. There are days when we all feel completely overwhelmed and disappointed with the struggles of life, but we can’t allow these feelings to consume us. When we get knocked down we have to brush ourselves off and get right back up. Like it or not – we have very little control over much of what life throws our way, but we always have control over how we deal with it. So life takes my leg and then just for fun gives me horrible phantom pain. There is NOTHING I can do about that, but I can do something about my attitude. I could have felt sorry for myself and given up on life – but I didn’t. I could have become bitter and resentful to those that love me – but I didn’t. I could have let the realization that life isn’t fair completely consume me so that I was nothing but an angry, mean person – but I didn’t. At the end of the day, we are still responsible for the people that we become when we are faced with tremendous burdens. We have to take ownership of that.

So…life may have dealt you a crappy hand – I am truly sorry – but it is up to you now to decide how this struggle is going to change you. Is it going to destroy you or make you stronger? There is so much joy in life if you just look for it. You may have to look a little harder these days, but trust me, it is there.