Fall Seven Times.

Pike Place Market

2009-02-15T10:15:00.000-08:00

One of the joys of living so close to Seattle (we're about 45 minutes away) is being able to go to Pike Place Market. Yesterday, we were trying to decide what to do for the day, and Chad suggested heading down there, since the last time we'd gone was last May. We asked Emma what she wanted to do, and she declared, "Seattle!" When I asked if she wanted to go to the market, she shouted, "Yes!" and ran off to her room.

I heard her digging around in her toys up there, and just about the time my curiosity was getting the better of me, she came back down carrying this:

She got this little mermaid doll from a vendor at Pike Place Market almost a year ago. I couldn't believe that she remembered! Apparently her mermaid needed some friends, so I told her we'd try to find the same vendor.

It was a great day - yummy food, lots of cool vendors, street musicians, and we even had a chance encounter with another family with an adorable 4-year-old boy with Down syndrome!

When we got to one part of the market, Emma ran ahead and was looking around. I asked her what she was looking for, and she said, "Where are the dolls?" We were in the spot where the vendor had been last year! Again, I was amazed at Emma's memory. Unfortunately, the vendor wasn't there, so we wandered around until we found her. Emma got some friends for her mermaid, and that's what made the day a real success for her.

It was a real lesson for me. I'm always underestimating what Emma can remember. We work so hard helping her remember and learn what are, to many of us, little things - especially anything to do with numbers. I forget that learning needs to not only be concrete for Emma, it needs to be relevant. If math made an impression on Emma like Pike Place Market and a doll, she'd probably be doing calculus by now! There has to be a way to make those connections for her. If I find it, I'll share it.

A little more kitten love

2009-02-15T10:11:00.000-08:00

Miss Emma goes to Olympia

2009-02-10T09:58:00.000-08:00

I've finally got the time to share a little more information and some pictures from our trip to our state capitol. Last week was a long and busy week, and I'm very happy to have fewer obligations this week. I need the break!

We live about 2 hours from Olympia, and we needed to sign in at the committee hearing at 9:30am, so we were up and out the door by 6:45am. Emma is a fantastic road tripper, and was really excited to go - I had been showing her some video of other committee hearings, so she knew what we were going to do.

The trip was uneventful, and by 9:15 we had found a parking spot and were walking over to the capitol. I gave Emma her camera, and here are some of the pictures she shot.

This is the building where we testified.

Once we signed in, we got to sit and wait. Emma was okay with this, since I'd brought our Zune and she could watch a movie. I was okay with this, too, because it gave me a chance to chat with some other folks who were there, including Cecile Lindquist and Cassie Johnston from the WEECARE Coalition. They were there to testify as well, and helped me feel a bit less nervous.

We were extremely lucky, because the bill we were testifying about was first on the schedule, and after Cecile and Cassie spoke, we were called up. If you watch the video below, you can probably hear my knees knocking because I was so nervous, but Emma handled it like a pro.

The bill we were testifying about is Senate Bill 5373. It's called the Infant Toddler Equity Act, and is designed to create parity in funding for birth-to-three services across all the counties in Washington state. You can find more information here.

I said my piece, the other mom from our county spoke, and that was it! Over in a flash, but I felt like the committee was actually listening to what we had to say - the chair even invited Emma to say hello, but my girl chose that moment to get a case of the shys and pulled her dress up over her face. Oh well, can't have everything perfect!

Here's Emma in the hall when we were done. I bought her outfit especially for this day - it's from Gymboree's tulip line. For those of you who aren't familiar with the significance of tulips in the Down syndrome world, there's an essay called "Welcome to Holland" that most parents are given soon after their child is born. It was written by Emily Perl Kingsley, a writer for the show Sesame Street, and mother of a son with Down syndrome. It's a beautiful piece, and you can read it here.

We posed for a picture in front of the capitol building, of course.

We went into the building, and stood under the big dome. Emma said, "Mom, it's beautiful!" I had to agree.

Last but not least, we paid a visit to our Senator's office - Senator Steve Hobbs. He was in a committee meeting, but his legislative aide was wonderful. Thanks for the tour, Kristy!

The whole experience was pretty amazing, and I highly recommend it to everyone. There's something empowering about feeling you're actually participating in the legislative process. When I spoke, these senators listened. Whether things go my way or not, I was able to have my say at that level.

As we were walking back to our car, I told Emma that one day, she will be a self-advocate. She won't need me to speak up for her, she'll be able to do it herself. I told her that one day, we will go to a hearing like this, and she'll be the one doing the talking. She looked up at me and said, in an almost reverent voice, "Emma too?" When I told her, yes, Emma could testify, too, she had just one word to say.

"Cool!"

I couldn't have said it better myself.

Changing the world...one Senate committee meeting at a time!

2009-02-05T16:31:00.000-08:00

Emma and I went to our state capitol, Olympia, today. We testified before a Senate committee regarding and Early Intervention bill. I'll do a longer post tomorrow, but I just found out that the video of the hearing is up, so I'm going to post it here. If you want to learn about the bill (Senate Bill 5373), watch from the beginning. If you just want to see us, go to 17:21.

Life with Emma

2009-02-03T07:18:00.000-08:00

I'm always talking about how Emma cracks me up every single day. She loves to put on little performances, dancing and singing, and just plain being silly. I managed to catch one on video yesterday, and thought everyone would like to see how hilarious this girl is for themselves. Check out her robot dance at the beginning - it's a classic!

Kitten love

2009-02-03T07:12:00.000-08:00

It's been a while since I posted a picture of George and Lucy. This one includes old man Simon, who turns 18 next month. How cute are they?

Much better!

2009-01-22T07:18:00.000-08:00

Things are going much better with the ears. We found the ultimate motivator - she spotted Hannah Montana earrings at the store, and I explained that if we clean her ears twice a day, EVERY day, she can get those earrings and wear them. Last night, she told me she needs to lose another tooth so she has money to buy Hannah Montana earrings. Is this kid hilarious or what?

A big thank-you goes to Dr. Renee, the world's GREATEST vet, who offered to let us have some lidocaine to help Emma's ears feel better (with doctor approval, of course). We didn't end up needing it, but it just warms my heart to know how much Renee cares about our girl (and all our furry kids, as well). If you want a really great read, check out her blog here

Yesterday, we had a kindergarten field trip to the local children's museum. Not only did Emma have a wonderful time, we found some terrific career options for her.

She could be a vet, like her beloved Dr. Renee...

A chef...

A bus driver...

A farmer...

A pilot...

Or a ROCK STAR!!

I'm know I'm not the only one!

2009-01-19T17:00:00.000-08:00

Every time I think of tomorrow's inauguration, a little chill goes up my spine. I get a little teary-eyed. I can't help it - back when Barack Obama won the election and made his acceptance speech, I told my husband, "I think I'm in love" and I still feel that way (for the record, his response was "I think I am, too").

The road ahead is going to be hard for most of us, but for a little while tomorrow, we can put those worries aside and celebrate this historic event. I can't wait.

It's not going so well.

2009-01-17T07:24:00.000-08:00

Emma is terrified of letting us touch her ears, and won't touch them herself. She knew before we pierced her that we would have to clean them and turn them, but we had to hold her down to clean them last night and this morning. I let her watch a YouTube video of a girl cleaning her earrings, and she was excited to be a big girl, but then she screamed and cried when we actually went in the bathroom to do it.

If anyone out there has suggestions, I'd love to hear them. I hate to take the earrings out, because I know she'll regret it and want them back. She's just built it into a scary thing in her head. We work so hard with her to help her get over other fears, and I don't want to just give up without trying to help her get comfortable with this.

We're going to keep at it for at least a few days - we're going to Grandma and Grandpa's tomorrow, and maybe she'll let Nurse Grandma help out. Wish us luck!

They grow up way too fast...

2009-01-16T16:51:00.001-08:00

For the last month or so, Emma has been begging us to get her ears pierced. She's asked before, but when we dropped the subject, she'd forget about it. Not so this time. She kept asking, so I started looking into it. I quickly decided I didn't want to take her to the mall - I'm just not convinced that the guns they use are sanitary, since they can't be completely disinfected. I looked into taking her to a local piercing studio/tattoo parlor, but they wanted $50. For ears! And you have to pay more for the studs you want!

I kept looking...and Emma kept asking...and I finally found a product that is sold to doctors for piercing. It's a pre-loaded, one-time use apparatus that comes in a sterile package. They had smaller, pediatric-size studs, which were perfect for Emma's tiny little lobes. And the studs were surgical stainless steel, another important thing, since it minimizes the chance of reacting to the metal. If you are interested, you can read more about it here

Before I ordered the kit, I had Emma take a look and asked her again if she was sure she wanted her ears pierced. "Yes!" So I placed my order, and Emma waited impatiently for four whole days. The kit came last night, and I showed her the piercers and had her watch the video on the website. Asked again if she was sure. "Yes!" Then we went to YouTube and watched a few videos of little girls getting their ears pierced. Asked again if she was sure. "Yes, yes, yes!" And she ran off to pretend to pierce the ears of all her stuffed animals and dolls.

After school today, we went over to my best friend Denise's house, and got to work. See how grown-up Miss Emma looks!

If it's Wednesday, it must be pinkeye...

2009-01-07T08:31:00.001-08:00

How do you know Emma's been back to school for two days? It's easy - the crusty, weepy, bloodshot eye is a dead giveaway.

We're off to the pediatrician this morning, hoping she doesn't pick up something worse while we're there, and thankful the snow is gone so we can actually get there!

Happy New Year!

2009-01-01T07:53:00.001-08:00

We indulged in an old family tradition last night: fondue! Fondue was our New Year's Eve meal of choice when I was a kid (not sure how that started - I need to ask my mom about it). Back then, we did a hot oil fondue, dipping pieces of meat and veggies into the oil to cook them. These days, Chad and I do a cheese fondue. Could there be anything better than gooey, melting cheese, with wonderful bits of bread, steamed potatoes, and other veggies to dip? Emma thought it was pretty cool, and we had a lot of fun.

Emma went to bed at her usual time, and we (old folks that we are) crawled into bed around 10:00. The fireworks in the neighborhood got so loud around 10:30 that Emma joined us in bed, and we all snuggled in the new year together. It sounds much more idyllic than it was - Emma was in and out of sleep, kicking us in the kidneys. Our dog was terrified of the fireworks and was cowering in any cave-like space she could find. The fireworks themselves were extremely loud and went on for hours. Eventually Chad went into the guest room, because Emma wouldn't go back to her bed and there just wasn't enough room for the three of us. So, Emma slept well, Chad is STILL asleep in the guest room, and I'm exhausted. Sounds like a normal day to me!

Happy New Year to all my friends out there! I hope 2009 brings you everything you're hoping for.

Merry Christmas!

2008-12-25T07:38:00.000-08:00

"Mom, Santa eat it!"

"What did Santa eat, Emma?"

"The cookies!"

These are the words that greeted us this morning. We had heard Emma get up and tiptoe downstairs to look for presents, as she has for the last few mornings. No disappointment this morning!

Last night, we hung the stockings and left Santa his cookies and milk, and a couple of carrots for the reindeer. Emma insisted on going to bed right away - we had told her that Santa only comes when kids are asleep, and she took that to heart.

Once we established that Santa had eaten his cookies, Emma wasted no time opening her presents.

My little Hannah Montana fan was thrilled to get a CD - something tells me we'll be hearing this one over and over and over...

Emma wanted only two things from Santa this year. In her words, "a haircut chair and a Jenny doll." We had seen these at Target, and it's all she could talk about over the last few weeks. Santa didn't let her down!

I see hours of fun ahead with these!

Emma did have some help opening her gifts...

Emma keeps going back to the empty plate and glass that Santa left behind. She is simply awestruck that Santa was HERE and ate the cookies and milk that we left him! "Mom, there's crumbs! Santa eat it all!"

The rest of the day will be pretty relaxed...our extended family celebration has been rescheduled for Saturday, thanks to several more inches of snow. We had about 3 inches overnight and it's still snowing! The lights have been flickering, and we're praying we don't lose power.

We hope your day is filled with family time, good food, and happy smiles. Merry Christmas!

An awesome stuck-in-the-house craft!

2008-12-23T16:35:00.000-08:00

So Emma and I are still at home - a plowing/sanding truck came by around 6:30 this morning and promptly got stuck on our hill. They had to call another truck in to help guide the first one as it came down backwards. They were finally able to get the hill plowed and sanded, and Chad headed to work for a meeting. He said it was pretty nasty out there, so I decided to stay put.

We've done a little bit of everything today. We made cookies, we cut lots of shapes out of paper and glued them to construction paper, we played with playdough, we worked on handwriting, we watched more Hannah Montana than any human being should be subjected to. I had to pull out the big guns.

I saw a version of this on the Food Network - the Neelys made Christmas ornaments this way. They took metal cookie cutters, sprayed them with cooking spray, put them on parchment paper on a cookie sheet, then put some hard candies into the cookie cutters. You put them in the oven until the candy melts, then pop them out of the cookie cutters after they cool. They were really cute, so I picked up a bunch of bags of Lifesavers so we could do it ourselves.

Our first attempt was an abysmal failure. They broke into hundreds of little pieces when we tried to get them out of the cookie cutters. I had to get creative, so I pulled out my silicone cupcake pan.

Emma helped me put Lifesavers into each little well, and I stuck them in the oven (350 for about 8-10 minutes). We let them cool, and VOILA!

Rainbow candy perfection!

We're done with the winter wonderland.

2008-12-22T16:00:00.000-08:00

It can go away now.

It was 3 degrees here on Saturday morning. I was reminded of our days back in Flagstaff, AZ...when we had to haul water and firewood in temperatures that low. That's one of the reasons we don't live in Flagstaff anymore.

We had another 4 inches of snow on Saturday night, and about 3 inches last night. We are STUCK at the bottom of our hill because we don't have four-wheel-drive, and when our brilliant road crew finally plowed and sanded, they did it late yesterday afternoon. Right before the snow started. Guess how long it took for that sand to disappear? We haven't seen the road crew since.

I kicked Emma out onto the deck for a little independent play time. She lasted about 10 minutes before she was at the door begging for hot chocolate and marshmallows. The girl knows what's important in life!

It's a winter wonderland!

2008-12-19T20:07:00.000-08:00

We don't get much snow here in Western Washington, but it's sure felt like a good old-fashioned East Coast winter lately! It's almost like being back in Philly! We've had about 10" over the last week, with some clear and cold weather in between storms. We're expecting another 4 - 6" on Saturday night, and then hopefully it will start to warm up. I never thought I'd be wishing for the rain to come back!

Emma, of course, loves the snow. She would stay out there until her little fingers and toes froze off, and getting her to come back in is quite the challenge.

This is the hill that leads directly to our house. Kids use this hill for sledding (yes, on the street!) and I watch nervously out the window every time it snows. Amazingly enough, this time we've only had one car end up stuck in our driveway (he slid after trying to avoid the sledders and crashed into the sign post), and only one sledder has gone into our garage door. For the record, the police don't care that the kids are sledding on the street, and a fair number of kids have parents who are not only supervising, they're participating. We wish they'd stop, but we seem to be the only ones who are concerned.

Thinking of Annette...

2008-12-16T10:51:00.001-08:00

One year ago today, my friend Annette passed away from synovial sarcoma. She was a fellow traveler on the journey of raising a child with Down syndrome, and did so much for so many. She was a wonderful friend, and I miss her.

Nothing says Christmas like...

2008-12-12T07:35:00.000-08:00

Children singing Christmas carols...

and kittens in Christmas trees.

Advocating for others

2008-12-01T13:03:00.000-08:00

I've recently been asked to help a couple of families that are having trouble getting appropriate supports and services for their preschoolers. I've been studying special ed law since Emma was about six months old (I've done oodles of trainings, read books, gone to conferences), have (so far) successfully advocated for her, and have been looking for ways to use the knowledge I have for children who aren't mine. My name somehow gets around because of the volunteer work I've done, and even though I've done some coaching over the phone, I haven't actually taken on actual cases until now.

One of the moms I talked to was frantic. I won't give identifying details, but her preschooler was suspended for behavior. Yes, you read that right. A preschooler. Suspended. For behavior.

We talked for over an hour, and she told me an IEP meeting had been scheduled for this week. I offered to go along to the meeting, but told her I would need to review all the previous IEPs, evaluations, and other communication in order to attend as her child's advocate. I offered to pick everything up, and make the copies myself. She told me she would get the paperwork together and call me the next day.

That was a week ago, and I've heard nothing. The IEP meeting is tomorrow. I know she has my phone number, because she called me back the first day we talked to confirm the date and time of the meeting. I am so frustrated, because I know I could make a difference for this child, but I won't go to an IEP meeting without all the facts! I also refuse to chase someone to get what I need - not only am I too busy for that, but since I am an unpaid volunteer, I need people to show some commitment and meet me halfway.

Am I being unreasonable? Or am I setting appropriate boundaries? What would you do?

An apology

2008-11-16T18:36:00.000-08:00

Yesterday, I found out that I owe Dave Hingsburger an apology.

Dave writes an amazing blog at Chewing the Fat, and I look forward to reading it every day. Some days he makes me laugh, some days he makes me cry, but he always gives me something to think about, and I almost always agree with him.

Except on this one issue. See, Dave has blogged numerous times about caregivers and touch. He has some pretty strong opinions on the ethics of touch, and while I completely understand why he (and others in wheelchairs) doesn't want complete strangers touching him (having survived pregnancy and those freaky people who want to touch your belly), I just couldn't get my head around a particular blog post of his. You can read it here. When I read this, I just couldn't conceive of affectionate touch between a parent and child being harmful. Dave spoke of the young teen in his post being "stuck at touch for the age of two," but I didn't see the problem.

Until yesterday.

I spent my Saturday in a fantastic training on having difficult conversations. We learned about engaging in learning conversations, rather than telling conversations, and some great tools for making conversations "safe" for both parties, so you can get past individual positions and down to the real issues. One of the group was a young man (early 20s) who introduced himself as having high-functioning autism. He was a neat kid who had plenty to add to the discussion, and a real purpose for being there. Some of his comments led me to believe that the majority of his difficult conversations have been with his mom - sounds like a typical young adult, don't you think?

His mom showed up during our last break, and she stayed through the rest of the training. When she walked in, she came up behind her son and put her arms around him. From that point on, there was rarely a moment when she wasn't touching him. She ruffled his hair. She rubbed his arm, his back, his neck. She squeezed his shoulders and kissed his head. It gave me the creeps. I touch my daughter in similar ways when we are snuggled on the couch watching tv, or at bedtime, but my daughter is SIX.

The worst part about this mother's touch was that it almost completely shut down the young man's interaction with the group. We had to get past her to get to him, and he hardly tried to get past her to reach us. For the first time I understood that touch - even touch that is intended to be good and affectionate - can be damaging. It can place limits and create barriers, and that is not what any of us who have children with disabilities want for those children.

So, Dave - I'm sorry. And thank you. Keep doing what you're doing, because even though some of us are a bit slow, we do eventually get it.

That'll teach me to complain about germs...

2008-10-24T11:56:00.000-07:00

Perturbed by pinkeye? Little did I know the bigger, badder, nastier GERMS were just around the corner. I should have known.

Two days after my pinkeye post, I woke up in the middle of the worst panic attack I've had in years. Think waking up from your worst "a serial killer is chasing me" nightmare - we're talking heart-racing, cold-sweating, can't-breathe panic. Only there was no bad dream, this is something that for many years has just happened, anywhere and any time, for no apparent reason. Fortunately, in my 20s I found out it had a name - panic disorder - and could be treated with meds. So why was I in a panic now? I rarely have major attacks like that, unless I'm going to be violently ill.

Oh, crap.

That's right. I was about to be violently ill. And thus began the 48-hour stomach virus saga of '08. I don't deal well with barfing illnesses. Call me crazy, but that lost its appeal after 16 weeks of morning, noon and night sickness with Emma. I did, however, manage to survive. Even lost a few pounds in the process (although someone told them where to find me again. What is it with eating solid food and gaining weight?).

Saturday, I wasn't 100%, but Sunday and Monday I felt like myself again. Moving along, catching up on laundry, went grocery shopping and even cranked up the bread machine (there's that solid food catch-22 again). Fast forward to Monday night, 11:30pm. I hear a rustle over the baby monitor. A raspy yawn. Promptly followed by a bark, then three or four more. Loud, terrifying croupy barks.

Emma has been prone to croup since she was about 10 months old, when we had our first hospitalization because of it. A couple of years ago, she was getting it once or twice a month in the fall and winter months, and the doctors finally let us treat her at home with steroids when it happens. Even so, we've still had at least one ambulance ride since then, and despite promises that she will grow out of it, the croup monster continues to plague us. At this time last year, the pediatrician put her on a daily dose of Flovent, in hopes that the inhaled steroid would keep some of the inflammation in her airway down, and what followed was the mildest winter croup season we've ever had. She went off it in the summer months, and had her first bout of croup a month ago - relatively mild, but still requiring two doses of steroids.

We have treatment down to a science: chocolate pudding and tv work miracles. The pudding coats the pills that need to be swallowed, the tv distracts from the stress caused by difficulty breathing. Monday night, there was a little more distress than usual, a louder stridor, and a lot more worry on Emma's part. Still, she her breathing did quiet down a bit, and she went back to bed. Unfortunately, she barked all night and was still at it in the morning. This has never happened after steroids, so we were off to the pediatrician first thing.

Since then, we've had two more nights of steroids, and last night, which was borderline, but she made it through without the meds. She was still a bit raspy and barking this morning, and still very tired - everything was making her cry. I decided to keep her home from school again, so we're just laying low and watching way too much tv. We're all a bit sleep-deprived.

Here's a tiny clip of what our croupy nights are like

And for anyone interested in a reading a little further, here is something I wrote after an ER trip a few years ago.

Emma couldn't breathe tonight. I was sleeping on the bed in her room, to keep an eye on her, when she rolled over, coughed a couple times, and started to wheeze. That cough is always described as sounding like a seal barking. It doesn't sound like a seal to me. It sounds like an ER visit closing in around me like the dark night. I took her into the bathroom as she fought for breath, turned on the shower and tried to calm her. It wasn't working. She was scared, I was scared, and the steam didn't help. Her eyes were panicked, like a wild animal suddenly trapped.

I didn't know what to do next, so I ran downstairs and outside to see if the cold air would quiet the awful noise coming from my baby. It didn't, and we headed for the hospital, a frightened family in a minivan, speeding across a bridge. As we pulled up, I grabbed Emma and ran through the automatic doors. There were people everywhere in varying states of distress, but all went silent, heads turning to see the baby who sounded like a broken garbage disposal and her pale, frightened mother. Somebody yelled for the triage nurse, and as we waited, they started taking our information.

The triage nurse came to get Emma and me; Chad stayed to give the stupid details they want before they can save your life. As the nurse began asking for Emma's health history, we heard a thump and a scream from the waiting area. A woman had walked in and collapsed. The nurse jumped up to help, and I thought, "Forget her! This is my baby you're taking care of!" I feared there was a stabbing or gunshut wound, and my child would end up on the back burner, struggling to breathe.

Not the case. The nurse came back. He checked Emma's oxygen saturation level, and it was in the mid-80s. My heart became a stone in the ocean. Emma couldn't breathe, and I was scared shitless. I pasted on my game face and answered the ridiculous questions about a surgery that had nothing to do with her current condition, and the endless questions that come when they realize she has an extra chromosome. Six hours - six minutes? - later, they led us back to a private room. A mural with an elephant and a tiger playing a lewd game of doctor filled one wall. Almost immediately, a doctor came in and started asking more stupid questions.

Then my hero arrived on his beautiful charger named racemic epinephrine. It was the respiratory therapist from the NICU. Nearly three hours, one breathing treatment, and one dose of decadron later, we were on our way home. Lord, I hate modern medicine, hospitals and doctors. But Lord, am I thankful it's there to save my girl's life.

Forget the pumpkins, bring on the pig show!

2008-10-18T07:20:00.000-07:00

Emma's pinkeye was under control Wednesday, so we got to go to the pumpkin patch with her kindergarten class. It was cold and foggy...but not raining...which can be a rare thing for October in the Pacific Northwest. Emma enjoyed every moment, especially the pig show.

What's a pig show? I'll try to describe it, but I wish I'd thought to take a video. So The Farm (in Snohomish, WA) has these pigs. There's an older pig, named George, and three little piglets. They have a pen set up with three little houses - one's supposed to be made of straw, one of corn (poetic license with the Three Little Pigs story), and one of sticks. Then there's a long run that leads to the brick house. The narrator tells the story, with big ol' George as the wolf. He goes to each house in turn as the piglets move into each one, then they drop the doors and the little pigs (chased by George) run past the kids to the brick house. Very hard to explain, but the narrator is hilarious, and the kids just laugh their heads off as the pigs run by. I somehow managed to get a shot of Emma's reaction. Do you think she liked it?

When we got home, all she talked about was the pigs. She was happy to have her pumpkin, but she really loved the pigs. Here are some pictures from the rest of our morning.

The germs...the GERMS!

2008-10-14T14:30:00.000-07:00

I was really looking forward to this morning. Yesterday, I took a 20 minute walk after taking Emma to school and I was going to do it again today. Emma's therapies were scheduled for after school, which would have given me an extra hour to get things done. My list was a mile long, and I hit the ground running when I got up this morning.

Then Emma got up. With a raging case of pinkeye. ~fizzle~ That was the sound of my plans for the morning. Instead, we were off to the pediatrician, scoping out an Rx for gentamycin drops (which apparently sting, based on Emma's screams when I put them in her eyes). The good news? She can go back to school tomorrow as long as she doesn't wake up with crusty eye. The bad news? Tomorrow's the trip to the pumpkin patch, which I've volunteered for. There's no school Thursday (because the PM kindergarten is going to the pumpkin patch). And I have plans scheduled for Friday which will have me out of the house the whole time Emma is at school, which means my next chance of being home alone "getting things done" is Monday. No wonder my house is a wreck!

Yes, I'm a whiner. Yes, pinkeye is incredibly minor. But did I mention that my eyes have been feeling gritty and itchy for the last hour or so?

Special Exposure Wednesday

2008-10-08T10:57:00.001-07:00

No Emma pics today, just some kitty love! George and Lucy (our snuggly kittens) can make any day better.

Okay, one Emma pic. "Look how nice I can be, Mom!"

Our Money Makeover story

2008-10-06T09:32:00.000-07:00

We were featured in the Sunday Seattle Times, with a money makeover to help us plan for Emma's future. Financial planning was a good process to go through, and I'd recommend it to anyone. If you're in the Seattle area, I'd definitely recommend David Lamp at BBJS Financial Advisors, who did our plan for the article. He was wonderful!

If you'd like to read the article, you can go here.

Emma's turn!

2008-09-30T08:59:00.000-07:00

Today's blog post comes straight from Emma. The request went something like this:

"Mom? Emma? Pictures? Computer?"
"You want to take some pictures and have me put them on the computer?"
"Okay!"
"Do you want me to put them on my blog?"
"Yes!"

So here you go, our walk to school, as photographed by Emma.

Emma's friend Alicia lives here - they're in kindergarten together. You can just barely see Alicia in the window; I think she's home sick today.

"Emma, don't just take pictures of the sidewalk." (For the record, I deleted a LOT of sidewalk pictures!) "No, Mom, feet!"

Here are Emma's friend Stephen and his mom, walking to school

Mrs. E - crossing guard and kindergarten aide extraordinaire!

Our neighbor's dog, Ranger. Emma got to practice saying "May I take a picture?"

Classmates Colby and Allyson

Allyson's dog

This made our walk to school a lot of fun. Anybody have suggestions for Emma's next photo blog?

Lament for a dead laptop...

2008-09-27T12:07:00.000-07:00

You know how you're always hearing that you should back up the data on your computer. Apparently, they aren't kidding. My less-than-six-months-old laptop went kaput on Thursday, leaving me with a dead hard drive and no way to access anything. I used it mainly for my PC (rhymes with Scampered Jeff) business, and actually had backed that info up about a week before, but my email is gone, my documents, a number of templates I'd developed, and...

My notes from the conference this week. All 15 typed pages of them. I'm just sick about this. I still have the compendium, with all the information speakers provided, so I will be spending time reading through all of that, hoping to jog my memory about those important off-the-cuff statements that I think are the most important thing of all.

I'll start this process as soon as I'm over this cold from hell. Hopefully I'll be able to do the information justice even without my notes.

Oh my!

2008-09-25T13:22:00.000-07:00

I've been given an award!

I've just returned from the Pacific Northwest Institute on Special Education and the Law. By sheer coincidence, I met Kim (Frog's mom - whose blog I read.) She nominated me for a Brilliante Weblog Award! Thanks, Kim! I had so much fun meeting you, and can't wait to get Frog and Emma together.

Now its time to share! Here are the rules for this award: -

1. The winner can (and should, really) put the logo on his/her blog
2. The winner must link to the person from whom they received their award.
3. The winner must nominate at least 7 other blogs for an award.
4. The winner must place links to those blogs on their own blog.
5. The winner must leave a message on the blogs of the people they’ve nominated.

Here are my picks:

Tara Marie at EmmaSage

Christie at Brady's Bunch

Nicole at All 4 My Gals

Jan at Mauzy's Musings

Rhonda at What-evah

Kei at Unlimited

Laura at Now I'm a Mom

All of these moms and I share something very special - a child with Down syndrome. I've been fortunate enough to meet some of them (and hopefully will someday spend time with ALL of them. They all mean so very much to me, and I hope you enjoy their blogs as much as I do.

How to tell that school has started...

2008-09-10T09:26:00.001-07:00

Germs, germs, germs!

Yesterday afternoon, Emma and I went grocery shopping. Halfway through our trip, she had an accident. In her pants. The kind of accident that leaves you with very little doubt that your child has a stomach virus. Of course, I had nothing to clean her up with, so we just left quickly, made it home, and I got her cleaned up and into a pullup. Half an hour later, it happened again. The third time, she made it to the toilet, but this morning, not so much luck. I think I'll probably be spending today up to my eyeballs in poo. I'm kind of used to it, though. Poo and I go waaaaaaay back - did I mention we have a kitten with chronic diarrhea?

I hate politics.

2008-09-08T14:36:00.000-07:00

Seriously. I've come to hate the whole process, and the way entire groups of people become completely unhinged. Towns, cities, states and our country somehow lose what limited civility they have left, and turn into snarling, vitriolic shadows of their former selves. It doesn't matter if the election is for the local school board or president, the process as it exists results in ugliness.

Today, it invaded my safest of safe places. My happy place on the internet, a private little corner of the web where just a few other moms and I go to help each other through the hard days and cheer for each other when things are going great. The political process crept its nasty little fingers in among my friends, and they briefly turned into people I didn't recognize. I was pretty bummed.

I'm not apolitical. I have a great interest in the results of this year's presidential election, have chosen the candidate I will vote for, and I am naturally appalled at the possibility of the other candidate ending up in the White House. I educate myself on the issues. I frequently want to tell people to pull their heads out of whatever crevice they've stuck them in, because the choices they're making politically are not what this country needs.

But I don't.

I don't tell people they're wrong, I don't try to educate them, and I certainly don't try to push my political beliefs on them. Does this make me a wuss? Does it mean I'm not committed to my beliefs, or my causes? Absolutely not. I don't do this when it comes to religion, either. Nothing pisses me off faster than somebody telling me I'm going to hell because I don't believe that Christ died on the cross so I could be forgiven for my sins. Unless it's somebody telling me that my pro-choice, pro-gay rights, socialist leanings are the reason this country is going to hell in a handbasket. Bullshit.

My ideals and beliefs are MINE. I have come to them over many, many years of searching. I have had incredible conversations with people whose thoughts were the polar opposite of mine, and come away with my own beliefs strengthened. I read, and I listen, and I try to learn even when I don't agree.

Your ideals and beliefs are YOURS. Your religion is none of my damn business, and neither are your political leanings. If I want to know, I will ask you - politely and respectfully. I have no doubt that your life experiences and what you have learned have led you to your belief system. I respect you enough to believe that if you are truly concerned about the issues, you will educate yourself on them before you choose a political candidate. But if you come down on the other side from me, that doesn't mean you're wrong. It simply means your vision is very different from mine. We disagree, big freaking deal. Adults do it all the time. Unfortunately, not so many of them are skilled at doing it respectfully.

I think the internet has played a big part in this lack of respect. Not only does it allow people to comment anonymously, it removes the some of the most important parts of true communication. We've lost facial expressions and tone of voice. We've lost the ability to control ourselves because another human being is standing before us. Unless we find a way to get that back into these interactions, the whole political process will just get nastier and nastier.

I don't think I want to be here for that. I'm going to go find a rock to hide under until November. Somebody come drag me out when it's all over.

My baby's a star!

2008-09-07T09:34:00.000-07:00

Parenting magazine is featuring photos of babies with Down syndrome in support of National Down Syndrome Awareness Month (which is in October). They chose a baby picture of Emma! Check it out here, and while you're there browse through the other galleries of beautiful babies with a little extra something in the chromosome department.

First day of school

2008-09-04T09:01:00.002-07:00

Wednesday was Emma's first day of her second year of kindergarten. We decided at the end of last year that a repeat would be the best...I mean most appropriate...choice for school this year. We wanted her to have more of a chance to develop her speech and social skills, and to hopefully develop some peer relationships. Her class last year was wonderful, and all the kids accepted Emma as Emma, but most of them treated her as a baby sister. They did things for her, they spoke for her, and they coddled her. This year, Emma is the BGOC - the Big Girl on Campus. Her teacher (same one as last year) called me at home last night to tell me what an amazing first day Emma had. She had Emma help with all of the first day things, and Emma showed all the other kids how to do calendar, what to do with backpacks, the routine for getting ready for recess, everything. It is so empowering for Emma to be the one who knows what to do, while the other kids are still struggling to adapt. She has to work so hard to achieve so many things, and to see her mentoring the other kids makes me happy beyond words. I have great hopes for this year.

I was a little worried about what her classmates from last year would think about Emma repeating kindergarten, but I should have known better. At the school's open house barbecue, we saw her buddies Kanon and Caleb, who asked if Emma was going to be in Mrs. M's class with them this year. When I told them she would have Mrs. Y again, they both yelled, "No fair! We want Mrs. Y again! How come she gets to do that?" Nothing like a couple of new first-graders to put things in perspective.

Here's a picture of my girl yesterday. She was so ready to go, she couldn't stop dancing.

Offense Taken

2008-09-04T09:01:00.001-07:00

Magic Marker Monday

2008-09-01T07:16:00.000-07:00

Emma has been very serious about her artwork lately. She's been drawing elaborate pictures on her Magnadoodle, and I have to rush for the camera to get a picture before she erases it. The best part is when she tells me all about the picture - it's so incredible that she's gone from speaking her own private language to using words the rest of us can understand. She told me this one was a picture of her on stage in her tutu, with her friends from dance class and the lights. It's a pretty darn good representation of her dance recital!

Challenge

2008-08-30T07:10:00.000-07:00

Dave Hingsburger, whose blog I read daily, passed along a challenge today. It goes like this: describe yourself with five adjectives. Go ahead, do it right now. How does your gut describe you before your brain starts analyzing? Here are my five:

Tired. The boss of me (AKA Emma) has been waking at night, and getting up at the butt-crack of dawn for weeks now. Tired has become so deeply engrained in my persona that I don't think I'll ever extricate it.

Passionate. I rarely do anything half-assed (unless it's a household chore!). I'm a passionate advocate for my daughter and others with intellectual disabilities. I'm passionate about cooking, gardening, reading, and my family. Try not to mess with me or the people I care about, because passionate quickly becomes fierce. That could get ugly.

Welcoming. People like to talk to me, and I'll talk to anyone. I love hearing their stories, and learning about what makes them unique. It's amazing what you can find out when you just listen - when we were in Boston this summer, I spent half an hour talking to a woman in her 70s about her children and grandchildren. Turned out one of her daughters has a pretty severe learning disability, and back in the late 60s, she fought for her daughter's right to an education and won. Without that welcoming part of me, I would have never known I was talking to one of the moms whose shoulders I stand on every time I advocate for Emma's education.

Optimistic. I am without a doubt a glass-half-full gal. I've been called Pollyanna many times. I just happen to truly believe that things happen for a reason, and they're going to work out the way they're supposed to. I'm not religious, I'm not sure if there's some plan in place, I just believe everything's going to be okay. This belief has gotten me through some tough times.

Control freak. Yes, I know, that's two words. And I could just call myself freak, but that wouldn't have the visceral impact of "control freak." You all know someone like me - the person who can't let go of any detail, who insists that things be done a certain way, who gets seriously stressed when something is "wrong." When my meds are working, this control thing is less of an issue, but what can I say - my doctors and I are playing med roulette to find one that will work properly, and my inner control freak is currently front and center.

So what were your five words? One of the questions around this challenge is whether people will describe themselves with words like gay, disabled, white, black, man, or woman. Did you? Leave me a comment and let me know, or a link to your blog if you write about this.

Out of quarantine!

2008-08-29T08:44:00.000-07:00

George and Lucy came out of quarantine yesterday. Emma is delighted, the dog is confused, and the old cat couldn't care less. George and Lucy are pretty pleased with this turn of events as well. I think they were getting tired of having only one room to explore.

Girl Scouts rock!

2008-08-28T07:57:00.001-07:00

Yesterday was our GS kickoff meeting - we had an ice cream social, and all the girls had a good time. Our Daisy troop has doubled in size, from five to ten, and this year I'm co-leading the troop (I'm also our Service Unit treasurer)! Yesterday's meeting included some Juniors and Cadettes, and the younger girls really enjoyed learning and interacting with the older girls.

Girl Scouts are an inclusive organization: they welcome all girls, regardless of ability, ethnicity, income level, or background. Later this year, I'll be working on a recruitment drive to reach out to families with girls with special needs. Sometime next year, I'll be training other leaders on how to welcome girls with disabilities into their troops. I think it's going to be a good year for scouting in our area.

Here's a picture of my Daisy. She's too cute!

Special Exposure Wednesday

2008-08-27T11:17:00.000-07:00

Memories...this was such a fun day at the zoo! Emma fell in love with this sculpture, and snuggled right up to it.

We are Big Pharma

2008-08-21T07:55:00.000-07:00

Ever feel like you're single-handedly supporting an industry? Back when E was getting sick constantly, I felt that surely we must have paid for her pediatrician's new car. These days, it feels like the pharmaceutical industry is all about building its profits on our backs.

Okay, it isn't really that bad. But yesterday, we got our monthly reminder call that DH needs to reorder his Enbrel. This is a med that helps keep his rheumatoid arthritis under control, and it would cost about $1400 per month if we paid for it out of pocket. That almost equals our mortgage payment. We don't pay full price, thanks to insurance, but co-pays are beginning to add up. Between the three of us, we take a total of 12 daily prescription meds. During the winter, it's 14 - E takes two additional meds in an attempt to stave off sinus infections and croup.

In an average month, we'll pay between $150 and $200 just for medications. And that's with pretty decent insurance! I know of far too many people who are underinsured, and the cost of drugs is dragging them down. More and more companies are instituting tier systems for their prescription formularies, and name-brand drugs like Enbrel are at the top. They're also putting caps on prescription costs, leaving even more of the cost on the shoulders of patients.

What's a person with a chronic condition to do? Tier 4 drugs like Enbrel generally don't have generic alternatives. If you shop around, the price is pretty much the same, no matter what pharmacy you go to. It's pretty prohibitive for middle-class folks, and downright impossible for anyone who is low-income.

There are a few options. You can research the manufacturer of your medication to find out if they have a payment assistance program - there are a couple of websites that can help you with this. Needymeds.com and The Free Medicine Association can help with this. You can find out if you're eligible for government medical assistance programs, but it's often difficult to qualify for these. You can also go without your medication - not recommended but sometimes necessary.

If you're in this situation and your insurance is provided by your employer, make sure your employer hears about it. Talk to your HR department, and let them know that this is putting a strain on you financially and emotionally. There are still some companies out there that care about their employees, and even if they don't, they're often interested in things that can improve employee productivity.

Finally, you can contact your legislators. And you can vote. While this won't result in immediate results, it's the only path to systemic change for the healthcare system. Talk to your public servants at the state and federal level. Let them know how drug costs are affecting you, and ask them what they plan to do about it. Make sure you know where candidates stand on the issue before you vote for them. All our little voices together can make one BIG voice that will be heard, even if it doesn't always feel like it.

I just can't let it go (the Tropic Blunder debate)

2008-08-20T10:09:00.001-07:00

Has anyone visiting here not heard about Tropic Blunder and why the disability community is so up in arms about it? I had an editorial printed in our local paper (which a few people actually read!), and I was pretty proud of that bit of writing. Today, I read a letter that blows everything I've read up till now out of the water. Let me introduce you to John Franklin Stephens. He's a Special Olympian and Special Olympics Global Messenger. His words should be the last on this subject.

"A lot of people are talking about the movie "Tropic Thunder" that opened in theaters last week. One of the reasons that it is being talked about is that the characters use the term "retard" over and over. They use it the same way that kids do all the time, to jokingly insult one another.

The people who made the movie, DreamWorks and Paramount, and many of the critics who have reviewed it say that the term is being used by characters who are dumb and shallow themselves. You see, we are supposed to get the joke that it is only the dumb and shallow people who use a term that means dumb and shallow. My dad tells me that this is called "irony."

So, what's the big deal? Let me try to explain. I am a 26-year-old man with Down syndrome. I am very lucky. Even though I was born with this intellectual disability, I do pretty well and have a good life. I live and work in the community. I count as friends the people I went to school with and the people I meet in my job. Every day I get closer to living a life like yours.

I am a Global Messenger for Special Olympics and make speeches to people all over the country. I once spoke to more than 10,000 people at the Richmond Coliseum. I realize that I am a voice for other people with intellectual disabilities who cannot easily speak for themselves. I thank God that he gave me this chance to be someone's voice.

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place.

We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, "unh huh," and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you. That is why I love being a Global Messenger. I work for days telling my dad what I want to talk about and he tries to write it down for me. Then we do it over and over until we have something that says what I mean. We wrote this letter the same way.

So, what's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind. I want you to know that it hurts to be left out here -- alone. Nothing scares me as much as feeling all alone in a world that moves so much faster than I do.

You don't mean to make me feel that way. In fact, like I say in some of my speeches, "I have always depended on the kindness of strangers," and it works out OK most of the time. Still, it hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making "retard" jokes or references. Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.

Last, I get the joke -- the irony -- that only dumb and shallow people are using a term that means dumb and shallow. The problem is, it is only funny if you think a "retard" is someone dumb and shallow. I am not those things, but every time the term is used it tells young people that it is OK to think of me that way and to keep me on the outside.

That is why using "retard" is a big deal to people like me."

My life.

2008-08-20T07:48:00.001-07:00

Three things take up most of my time these days...Emma, Lucy, and George.

We got our kittens on August 2nd, and they've been a lot of work! It's been 17 years since we adopted our last shelter kitten, and I forgot all the problems that can come with them. They both had fleas. Lucy had a terrible upper respiratory infection and a claw that had been somehow ripped out. George had (and is just now starting to recover from) diarrhea. They've been quarantined since we got them to protect our senior citizen cat, and I've spent many days taking care of them (did you know that saline spray helps kitties with colds, just like people?), giving them meds, cleaning runny eyes and noses, taking field trips to the vet, changing nasty litterboxes, and cleaning out poopy bathtubs. Emma's dying for them to come out of quarantine - she's only allowed to play with them when I can supervise. They're finally getting healthy, and we're hoping in another few days we can start introducing them to the world outside Mom and Dad's bedroom.

Well, I've gone and done it!

2008-08-19T18:54:00.000-07:00

It was bound to happen sooner or later. Almost everyone I know has a blog, and I finally caved to the pressure and started one of my own. I have to admit, I love the idea of having my own soapbox to stand on anytime I want.

The name Fall Seven Times comes from a Japanese proverb - Fall seven times; get up eight. I think everyone who reads this knows, but my daughter Emma has Trisomy 21 (Down syndrome). She's taught me a lot about getting back up every time something in life knocks you on your keister. The title seemed appropriate.

Keep tuning in for more! My life is incredibly glamorous and exciting (NOT!), so you don't want to miss a thing.