A Saturday Adventure
With Ben

We had a terrific family weekend. Several weeks ago Jessie brought home a few goldfish left over from a school science experiment. This led to Joan fixing up a small aquarium to keep them in which we placed in Ben's therapy room.

Both the kids actually had their own aquarium set ups several years ago. While Jessie showed a great deal of initial interest in hers at the time the care for both fish tanks quickly fell into my hands. As those of us who've ever cared for one know the chemicals in an aquarium have to be closely monitored - otherwise "sushi-cide" and other small environmental disasters occur.

While Ben kinda sort of noticed the one remaining tank the Great Ick Plague of 2003 finally wiped out the remaining population. All those filters, plastic plants, and even 20 gallon tank made their way into the attic. Thankfully!

Little did we know that Ben would be so entertained by those gold little swimmers! A few weekends ago we located the old equipment and set up a new home for some shiny colorful fish to entertain our son. Since Jessie spent the day with a friend Saturday we set out on a little adventure with Ben.

Joan makes sure Ben looks his best! She has been his personal (and mine) stylist for most of his life. Plus she gets loads of compliments from professionals! It's not that easy cutting the locks of a special needs child.

Here Ben is checking out his choices. To be honest we were a tad disappointed that he wasn't more excited by the fish. Evidently something, or more precisely some things caught his attention on our way in. Let's see if you can guess what they were...



Aside: no, your bookmark is not playing tricks on you. This was initially added yesterday afternoon. I've had a frustrating 24 hours with YouTube trying to get this to load. There is a second part that I've not had time to edit but hopefully I'll add that before the end of the week.

And for the record, please don't tell Joan we need a bird! Ben's reaction drew a bit of a crowd - in fact if you listen closely you can hear her saying "it's time to go." It was awesome to find a group of strangers rooting for our son...even as we were checking out.

Welcome Magic 98.9 Listeners!

We appreciate you listening to my interview with the lovely Monnie Whitson this morning. Ive done about a dozen interviews with television and newspaper folks but this one by far was the easiest and most comfortable to be a part of. Although it helps that Monnie is a dear friend and we've known each other since childhood, it's still a live interview. It just proves to me how incredibly gifted my friend is at her job.

The image to your right is the one Monnie and I discussed on the air. It has become Ben's "signature" piece because I caught him creating it along with his very vocal description! As you will see at the bottom of the page, Ben became quite animated while he worked. This is quite unusual for him. Ben is usually very quiet when he paints.

Our hope is that you become a regular reader of our blog and be a part of our extended family! Monnie and I talked about PKSKids.net quite a bit during the first half of the show. We'd like for you to vist there as well to learn more about Pallister Killian Syndrome.

Until we finally meet please poke around our blog! The left column (called a side bar) has links that will take you to images of our paintings, my own artwork, and past entries to our blog. That is where you will find our family's "exceptional" journey. Please stick around and e-mail me if you have any questions! I am open to speaking engagements and of course so is Ben!

Frogmore Stew
(Low Country Boil)

The folks over at PKSKids.net are putting together a cookbook as a fund raiser. Basically members of the organization have been asked to submit some of their family recipes. Yeah, I know. You've heard of this concept before. well this one should be a bit different given that we have PKS families located all over the world! I'm kind of excited to here how one prepares shrimp on the barbie in the Land Down Under. Now a recipe for haggis? Not so much.

Anyway, I thought I'd share one of my submissions with you today. With all this cold weather affecting just about everyone from Miami to Minneapolis I thought I'd try to warm your heart with a recipe traditionally served during warmer months here in the south.

There are several variations of this recipe that originated along the southeastern coast of the United States. Basically the difference in each region’s boil is the native seafood found in each southern state’s coastal waters. But several ingredients are always found in every boil: water, sweet corn, sausage, and Old Bay Seasoning!

For the record there are no frogs in Frogmore Stew. The funny name comes from the tiny Frogmore community on St. Helena Island near Beaufort, South Carolina. In fact some locals actually call it Beaufort Stew. The high brow folks in Charleston call it Low Country Boil. It really doesn’t matter what you call it other than delicious.

I have fond memories of eating Frogmore Stew almost every July 4th at my grandparents’ house in the mountains of northwestern South Carolina. My dad, grandfather, & uncles prepared our dinner next to the small lake on their property. This feast was the exclamation mark on a day filled with swimming, fishing, and fireworks. And let it be known that homemade ice cream sits well on a tummy filled with our native stew.

BASIC INGREDIENTS:
¾ to 1 cup of Old Bay Seasoning per 6 quarts of water
1 can of beer (your favorite)
2 cloves of garlic, crushed or minced
2 or 3 onions, quartered
Several lemons, halved
Redskin potatoes (depending on size, 3 or more per person)
Spicy smoked sausage, cut into 1 to 2-inch slices (¼ pound per person)
Fresh corn, broken into halves or thirds (1 ½ ears per person)
Shrimp (½ pound per person)
Melted butter
Cocktail sauce

ALTERNATIVE INGREDIENTS:
Crab, still in the shell but broken into pieces – we like Stone Crab claws
Scallops – we prefer the smaller bay scallops that have a sweeter taste
Clams – nothing better than the littleneck variety (cook in the shell)
Grouper or other hearty white fish.
My brother in Louisiana adds crawfish to his boil and friends in Florida add rock lobster tails to theirs.

PREPARATION:
Fill a large steamer pot halfway with water. Add Old Bay Seasoning (or more to taste) and the garlic. Squeeze the juice out of several lemon halves and throw them in. Pour in the can of beer. If cooking indoor use medium to medium high.

When the seasoned water comes to a boil, add redskin potatoes and boil for 15 to 20 minutes (don’t let them get too tender yet). Then add the sausage. Boil for 5 minutes. Now add the corn and boil another 5 minutes (Begin timing immediately! Do not wait for it to boil again). If you’re cooking crab or lobster you’ll add them in at this time as well.

Now add the shrimp and any other seafood. Cook for 3 minutes. If you added clams you’ll know it’s done when they open up. Drain the liquid before serving.

SERVING:
The “proper” way to serve Frogmore Stew is to have a picnic table covered with craft paper. Newspaper will do but it can get pretty messy. Pour the stew out onto the covered table and enjoy the feast! Be sure to have plenty of butter, cocktail sauce, more lemons, and plenty of paper towels.

Now some folks (mostly in Charleston or Columbia) have been known to actually use plates at fancier occasions like weddings and baptisms but true Palmetto State residents treat the boil like a pig pickin’ and just grab what they want off the table. It’s easier to socialize that way.

One cooking tip is to use a turkey fryer with a basket to cook with. This makes it much easier to handle the food while the water drains back into the pot. Obviously this is only an outdoor method of cooking.

What We've Been Up To...

We apologize for not updating the blog very much recently. I can happily report that for a change it isn't from anyone being sick around here! All of us have finally recovered from The Virus from Hell.

Ben has returned to his typical laughter-filled days, keeping the rest of us entertained with drooly smiles and giggles that make his skin jiggle from his chubby cheeks to his soft little toes! In fact today he had an outstanding visit to his outpatient therapists, the first one he's been able to attend in two weeks. It blows my mind sometimes just how fast he can recover from being as ill as he was just a week ago today.

Over the past few days we've had several noteworthy things occur to tell you about. We adopted a new cat from Ben's occupational therapist who is getting married in the near future. We'll share some pictures of Miss Sophie very soon. Ben and Jessie also have a new fish tank. Once they are established we'll be able to add a few more colorful fish. So far Ben has truly enjoyed having the new friends around.

A wonderful young lady from our area came by this past Saturday. She has a desire to pursue art therapy as a career and chose to study Ben's artistic endeavors for her senior project. You will be hearing more about Morgan soon but I will tell you she is cute as a button which Ben didn't miss out on noticing. Joan & I agreed that we've never heard or seen the young man become so friendly so quickly with someone he just met! Ben is such a flirt!

I will be interviewed later this week for a local radio program that will air this weekend. Monnie Whitson is a friend I've known since her brother and I were in Cub Scouts together. She is also part of a popular morning radio show here in Greenville as well as a weekend program. We'll discuss life with Ben, our art, the blog, and probably a bunch of old memories while we're at it. Hopefully I'll be able to put a recording of it somewhere that you'll be able to hear it.

Now for the creative work that's been going on behind the scenes, I mentioned a few weeks back that my mom and I have been collaborating on some tote bags and recycled clothing. Well we're finally getting some of these completed and I have to say we're quite pleased! We've actually sold a few things that didn't make it to the blog so I thought I'd share some pics of something not 100% finished. Over the next few days look for a few more items here before we start selling them via our store.

This the rear view of a Levi Strauss men's small (ladies medium) denim jacket. It is sport coat length. Click on each picture for a closer look at each one! The top left photo is detail of the painted sun on the middle panel.

This is detail of the 5 palms my mom cut from several tropical themed fabrics. As you can see each palm is machine sewn using a different decorative stitch.

The two palms on the lower left panel are done with acrylic paint including fabric puff paint.

This is a fabric piece my mom hand and machine embroidered to make it "pop."

This is the front view. To complete it I will be adding 3 to 5 tropical fish below the left side pocket. I plan on using a black background to tie in the whimsical sun above.

This tote was the inspiration for the jacket. we think they will make a great pairing!

Here is the detail of one side. My mother Sandy used several decorative stitches to enhance the pattern of the fabric.

And once again, the metallic painted Mr. Sunshine appears on the tote as well! If you are interested in these please e-mail me at benwaddell@bellsouth.net. We are also accepting custom work as well. In fact we have completed one item mailed to us recently and are in the middle of completing another.

The Clash

Even though I love the band this entry is more or less our own version of "should I stay or should I go." Let's just say the Waddell Casbah has been rocked (I much prefer to "rock the cash bar" as my frat brothers used to say). That little transition of Jessie's from little girl to "tween" has now officially happened.

This all began yesterday afternoon when Jessie informed us that she had been invited to go to the mall this evening with some girl friends from school....with only one parent....who would not be with them 100 percent of the time. Friday night. The thirteenth. The mall. Where hoodlums (read: teenage boys) hang out. My daughter. Practically alone.

My first instinct besides handcuffing her to the chair she was sitting in was to say absolutely 100 percent without a shadow of a doubt no way, no how, never, never , never in your wildest dream. Joan? I wonder what in the hell happened to the mother that always carried The Accessory (otherwise known as Jessie) around whenever she went shopping never letting the child out of her sight (hence the nickname). This is the very same woman who frets over Ben getting into any body of water with me including the bathtub. And once she nearly put a feline we had at the time into orbit when she discovered it in Jessie's crib.

Her words: "I think it'll be okay." Let's just say a train in vain left the station and there was no opportunity for a clampdown.

As it turns out it this was much ado about nothing. Jessie is at the mall as I type this and should return home before dark. Though it's not truly a "give 'em enough rope" situation we've reached that point where we have to start the process of letting our daughter prove her maturity and this is the first test of many. More than likely this is something we won't have to go through with Ben which in all honesty is an outstanding blessing.

Letting her go. The words make me shiver. If you'll excuse me now I need to fetch a bottle of aspirin and a glass of wine.

Another Round, Please!

I e-mailed a friend this afternoon who was checking on Ben and the rest of us who've been under the weather now for what seems like an eternity. Basically I told her we feel like the eye of the storm passed over us yesterday. We're back where we were Friday. Wondering. Worried. Waiting.

Our guesses include but are not limited to: still recovering from last weeks "cold" virus; The 5th Disease brought home from a visit with cousins; another virus; an abdominal migraine; or God forbid, a shunt infection; or any combination to the above; or something else.

If you read my article at Hopeful Parents yesterday then today's developments would be considered ordering another round of margaritas. In fact let's try another flavor, shall we? Oh and make it to go! This is a perfect example of what life is like being a non-typical family.

I see no tulips. No windmills. No Dutch Masters (Van Gogh kicks Vermeer's ass anyway). Only a sickly little boy who is breaking my heart because he can't tell me where it hurts, what itches, when he's going to throw up, or even, "Dad, I don't feel good." Instead we look at the color of his skin, what his vomit looks like, how many seizures he has, watching a monitor that tells us if he's getting enough oxygen to his blood stream. Honest to God this is like fishing without bait and hoping to snare a large mouth bass on the hook as you reel it in.

We didn't get much sleep last night and with Joan heading to work tomorrow, the prospects of me getting any rest until the nurse arrives tomorrow seems very unlikely. Oh yes. Did I mention Joan and I are right on the edge of full-blown sinus infections?

I swear to God, if someone mentions the word "tulip" tomorrow I will beat 'em to death with a wooden shoe!

BTW, this is a pic of Ben late in the week. Check out the little rash on his cheeks. Gah!!! we should've picked this one up.

Hopeful Parenting!

I am over here today! Come check out this spiffy new website. Explore it, join it, and definitely bookmark it! You will find that I am a regular contributing writer along with another two dozen or so exceptional parents. Our hope is to build a very large community - a gathering place for anyone interested or connected with families of exceptional loved ones. We'll see you back here in a day or two.

Special Note: Ben seems to be doing a bit better today. We're in a wait and see mode though because this is how yesterday started. Before it was over he was back on oxygen so please continue the good thoughts!

Hopeful Parents

There is some irony in the title I've chosen for today's entry. In the bigger scale of blogging in general that phrase is a very special hint about something you'll have to return here tomorrow to find out about. In fact this post will be rather uneventful since I've emptied my noggin earlier today working on Saturday's secret. Essentially I'll be introducing our readers to a brand spanking new website that not only am I a part of but some of my very favorite exceptional parenting bloggers happen to be writers there as well. Membership is free and open to anyone who wants to join. So be sure to check in with us this weekend.

We are also hopeful that Ben will be well soon. Although he gave us a few smiles earlier this morning he's now back on oxygen. The worry here is that the junk he cannot clear from his lungs turns to pneumonia. I'm almost one hundred percent certain that he's headed to the pediatrician first thing in the morning. Keep the little guy in your thoughts and prayers.

I have to admit this has been one long and grueling week. Although we've had nursing help for Ben sleep for me and Joan has been at a premium price. We've either been feeling the effects of this virus ourselves or we've had our ears glued to Ben's monitor. Hopefully (See? There's that word again) the weekend will give us a chance to catch up on rest.

Now I'm off to grab another box of Kleenex and some hot soup. Hopefully (There it is again!) I'll actually discover some Ramen Noodles in the cupboard. If I find some Jack Daniels you just might not hear from me until Monday.

Shredding

Sorry for not updating in a few days but a cold virus has infested "the hive" this week. I call it that because whenever someone says something here it sounds like a bunch of bees having a derby to see who can reach my ear canal first. And as miserable as we all feel we know there's just a few more days until we're back to normal. while Jessie was the first to get it and has missed all three days of school this week, today the spark that radiates from her precious blue eyes finally returned.

Ben? Well he's just pissed off at the moment. We did have to put him on oxygen early yesterday morning but the not-so-little fighter doesn't quite grasp why he needs his rest and can't play as usual. we definitely think that's a great sign.

As for me (Joan hasn't caught it yet and has been noticeably scarce the past few days) there's not much I can do but grin and bear it. All you moms out there in Bloggy Land have my deepest sympathy because I know full well how we men count on our spouses to baby us through our illnesses. I just can't get away with it this time.

So as we recover from the bees shredding our lungs, throats, and sinuses check out this marvelous video from 1988. Eddie Van Halen jams with Jan Hammer (Miami Vice songwriter), bassist Tony Levin (King Crimson, Peter Gabriel), and Bill Bruford (King Crimson, Yes). Let's just say Eddie shreds the frets better than the bees shred my ears.