Your Yuck, His Yum – A Musing With Malcolm

Mustard and Ketchup

Batman and Robin

Coffee and Cream

Beans and Rice

Baseball and Hot dogs

West Forsyth Titans and 111 mile drives to Raleigh

Raleigh lawmakers and public school advocacy – well, maybe not

and…

Pancakes and Ranch Dressing?

At least to this little man.

​We are sitting at a restaurant, specifically Stratford Station Grill. Malcolm loves seeing George. Great food and they treat my kids like their own.

He gets pancakes. I get chicken souvlaki with a side salad. He has syrup. I have ranch.

He sees an opportunity and makes it work for him.

I didn’t need all of the ranch anyway.

 

He’s Home – Finneas Luther Logan “Finn”

He’s here at home with is new family and the cats are a little on edge.

And he’s big.

The great people at Carolina Great Pyrenees Rescue (http://carolinapyrrescue.com/) deemed him ready to go to a new permanent home. Finn’s last heartworm treatment is in the past and while he is still rather underweight for a pyr, he is an instant presence.

Bellowing barks from the belly? Check.

Flowing white mane like a small woolly lion? Check.

Guttural sounds that erupt from within? Check.

Deep brown eyes that scream, “Hey, are you gonna eat that?” Check.

He travels really well in the van and he likes being around his family already.

And I am amazed at how he is with Malcolm. He does not aggressively seek his attention, but lets Malcolm know that  he is there. Malcolm even has started calling him by his new name “Finn” and engages him. He even let Finn watch his iPAd with him.

Malcolm doesn’t let us watch his iPad with him sometimes.

So here are some pics.

Finn5Finn4Finn3Finn2Finn1

 

Phineas Luther Logan – Our Newest Addition to the Family

We are adopting a dog.

We lost our beloved Boo Radley this past winter and have decided to adopt another dog, preferably one that was rescued, young, and chill enough to be around Malcolm but watch him as if he was a member of the pack.

And we found ourselves this fine boy.

finn3

“Jackson” as he was called was rescued from Charleston and he is a Great Pyrenees with a  southern accent. Great Pyrenees were bred to watch over flocks of sheep and goats in the Pyrenees Mountains and are generally regarded as calm, nurturing, and protective of their brood.

And they are huge. This guy is supposedly skinny and getting weight put back on him, but that’s not what really sold us on him.

McK has a gift with animals. She tends to bond with animals quickly, especially dogs. Her Silver Award project for Girl Scouts centered on caring for older dogs. There was no doubt that she and “Jackson” got along.

finn1

It was how he and Malcolm bonded. Malcolm does not bond with animals unless he finds them approachable, and this dog is much bigger than Malcolm. This dog could swallow Malcolm.

But that did not stop Malcolm from going to him, petting him, and putting a stick in his mouth without any insistence from us. Malcolm even called him by name.

And they visited.

Good times.

Better times to come.

And a better name compliments of the McKster and her mother.

“Phineas Luther Logan.”

“Phineas” just sounds cool.

“Luther” is for Edris Elba’s character who kicks British ass and talks sophisticated plus he is apparently easy on the eyes to the women folk in our house.

“Logan” is for Wolverine of the X-Men as McK and I are big fans of the Marvel chain of superheroes.

We’re going to call him “Phin” – easy for Malcolm to say when they pal around.

finn2

 

The Sartorial Splendor of Malcolm – A Fashionable Musing That Will Make You Jealous Of…

…vestiary  genius.

Our handsome little man is the spitting image of his stunning mother. No doubt of the maternal resemblance.

He got his ability to talk with the ladies from his Grandpa Ed.

He got his dance moves from listening to his sister’s music.

So what did he get from his paterfamilias? And dammit, I am the paterfamilias!

paterfamilias

FASHION SENSE!

Style.

Vogue.

Trend Setter.

The GQ Gene.

Knowing what to wear and when to wear is not learned. It’s in the blood. And we have the proof.

mal1

Here Malcolm models pirate underwear, white socks, teal colored shirt and over sized water shoes – a must-have for the spring season. It’s colorful, airy, and comfy.

mal2

Here we have the early morning Olivia Newton-John / Xanadu / I am about to do aerobics in my pj’s / outfit with glasses and a bowl of Cheetos. Headband and facial expressions are vital accessories.

mal3

This outfit is perfect for bedtime stories and communicating that you do not want any more ear drops for the ear infection.

mal4

With the Final Four this weekend, it is hard to forget the baggy shorts of the Fab Five from the University of Michigan. However, instead of basketball shoes, we have water slippers and a baseball undershirt.

mal5

West Wear. Mix and match. Can’t go wrong. Again notice the baggy shorts.

mal6

Baggy shorts with sweater vest. NO UNDERSHIRT! That is a must for this look. However, you must have the “pipes” to pull off the work casual of the sweater vest without the shirt underneath.

Sometimes you can accessorize with black socks with black flops.

mal7

Napolean Dynamite boots. One can dance in them as well.

napolean

mal8

No need to explain. When you wear a cape, all else matches! He’s wearing a tie – must be an important meeting. The head band means that he is ready for lots of thinking.

mal9

Again, West Wear goes with anything.

mal10

And last, but not least, the no-socks look.

 

 

 

Yes, Virginia, There is a Santa Clause and the Genetic Information Nondiscrimination Act and Really Bad Letters to the Editor

Yes, Virginia! There is a Santa Claus.

And there’s GINA!

Plus there is a lot of erroneous information in your op-ed printed in today’s Winston-Salem Journal.

Much has been made of your bill H.R. 1313, The Persevering Employee Wellness Programs Act and its dystopian implications on genetic privacy laws already outlined in the 2008 Genetic Information Nondiscrimination Act or GINA.

Your letter to the editor this morning seemed more like an attempt to save face in light of the prospect that the current version of Rep. Ryan and President Trump’s healthcare overhaul will fail miserably. The text of that letter follows:

“REP. VIRGINIA FOXX, Banner Elk

H.R. 1313

I believe the Journal’s March 15 editorial “A wrongheaded bill on genetic screening” misrepresents legislation to provide regulatory clarity for voluntary employee wellness plans.

A provision in the Affordable Care Act (ACA) encouraged greater use of these wellness programs. However, steps taken by the Equal Employment Opportunity Commission (EEOC) led to conflicting regulations. Those who want to offer these programs must either follow the ACA guidelines and be in violation of the EEOC rules or vice versa. By reaffirming the policies outlined in the ACA, H.R. 1313 removes this legal uncertainty so employees can continue to benefit from these voluntary wellness plans.

It’s important to understand that wellness programs have always been completely voluntary. They remain voluntary under H.R. 1313. Furthermore, discrimination based on genetic information is illegal under existing federal law and remains illegal under H.R. 1313.

The editorial also claims the legislation imposes financial penalties on individuals who decline to participate. I disagree. In programs that offer incentives, those who choose to enroll can receive a reduction in their health-insurance premiums. Those who decline to participate are not forced to pay any additional health-care costs, nor will they experience any increase in their health-insurance premiums.

Voluntary employee wellness plans have long helped working families control their health-care costs and improve their quality of life. It’s unfortunate that critics of the bill are spreading false information to deny workers that option.

Virginia Foxx is North Carolina’s 5th Congressional District representative. — the editor (http://www.journalnow.com/opinion/letters_to_the_editor/the-readers-forum-thursday-letters/article_fcc96549-17dd-584c-beab-33c3d8e8a430.html). “

While I very much appreciate your interpretation of the law, it fails to explain why “nearly 70 organizations, representing consumer, health and medical advocacy groups, including the American Academy of Pediatrics, AARP, March of Dimes, and the National Women’s Law Center, said the legislation, if enacted, would undermine basic privacy provisions of the Americans with Disabilities Act and the 2008 Genetic Information Nondiscrimination Act, or GINA” (http://www.journalnow.com/news/local/employees-who-decline-genetic-testing-could-face-penalties-under-proposed/article_ec4136ca-650a-5ecd-9963-f5fb91acf1d4.html).

Something tells me that organizations which not only represent medical entities and lawful endeavors, but understand how the law applies to medical practices know much more about these types of things than you. But that is not to say that you have not done some dabbling into scientific foresight and logical divination.

Remember these gems?

  1. At North Surry High a few weeks ago, discussing potential FDA regulation of tobacco and tax increases on cigarettes, Foxx, a former educator, was quoted by The Mount Airy Newsas telling students that “I bet a lot of you like Mountain Dew. You wouldn’t want the government to tell you not to drink Mountain Dew” (http://www.journalnow.com/opinion/editorials/article_7541047c-2b29-5478-b53f-b132842eeb3c.html).

Mountain Dew and cigarettes. Caffeine and nicotine. Nothing addictive about either of those.

dew and gigs

  1. Virginia Foxx (R-N.C.) disputes President Obama’s claim that 47 million Americans lack healthcare. “There are no Americans who don’t have healthcare. Everybody in this country has access to healthcare,” she says. “We do have about 7.5 million Americans who want to purchase health insurance who can not afford it,” she says, urging Congress to adopt a new plan for healthcare reform that wouldn’t “destroy what is good about healthcare in this country” and “give the government control of our lives” (https://thinkprogress.org/rep-virginia-foxx-there-are-no-americans-who-dont-have-health-care-582c8e227b6c#.23f3o5c2f).

And the very bill that you are helping Rep. Ryan and President Trump pass at this very instant was just clarified by the Congressional Budget Office as being worse than the original one that did not have enough support earlier this week.

foxx ryan

“The agency revised its figures to reflect amendments made to the bill that were announced on Monday. The new numbers do not take into account a deal underway to woo House conservatives to support the measure.

Though the bill would be more costly, it would still leave 24 million fewer people insured than under current law. Some 52 million people would be uninsured in 2026 under the GOP legislation, compared to 28 million if Obamacare continued — the same as the prior estimate (http://money.cnn.com/2017/03/23/news/economy/obamacare-cbo-republican-bill/index.html).”

This could be worse than Obamacare? No! Why? Because Virginia, you said,

https://www.youtube.com/watch?v=sA66v858_NU&feature=player_embedded

  1. That’s right. You said we have more to fear from Obamacare than we do from terrorists.

So when someone who espouses hyperbolic tendencies when speaking to constituents in Congress while writing books that praise her faith, yet totally contradicts reality and hides behind the fact that she never debates political opponents or hold town halls for fear of being asked intelligent questions writes an op-ed like the one aforementioned, then she may need to be tested herself – for a preexisting condition known as ignorance.

I know what I am asking for from Santa this year.

And this genetically-enhanced kid still wants more hours in the day to go play ball.

Malcolmsanta

Malcolm’s Wish For World Down Syndrome Day (3/21)

Every year on March 21, the Down Syndrome International sponsors for the world community a WORLD DOWN SYNDROME DAY. You can read more about it here: https://worlddownsyndromeday.org/.

The date is a direct reference to genetic condition known as Trisomy 21 (three #21 chromosomes) which is commonly known as Down Syndrome.

But Malcolm does not thin much about the fact that he has a little bit more genetic material than most people do. In fact, he could care less as long as he feels included just like other kids.

So Malcolm asked me to tell you that he wants people to more inclusive and accepting of what are really minors differences we all have because whether you have Down Syndrome or not, we are more alike than different.

That is unless you are not redheaded and blue-eyed like over 99% of the world which makes Malcolm part of rarest minority in the world in that regard.

And he wanted me to share some pictures of him that show how uniquely alike he is to other kids.

And here’s to the fact that Malcolm never really needs a special day to just be.

Any day will do.

Musings With Malcolm – Time To Get a New Baseball Glove To Match the Hair

If you keep up with just a few of the postings about our little fireplug, you may have noticed that we have been in a bit of spring training. Why?

Baseball season is about to start.

For Malcolm, that means the Challenger League that for years has been running at Southwest Forsyth Little League with the tireless efforts of great people with big hearts and infinite patience.

For me, it allows a dad to share his favorite game with his boy.

And an excuse to go shopping for equipment.

Malcolm’s glove from the last two years has taken a little bit of a beating and to tell you the truth, he has grown some – finally. At last weigh-in, he was a little over 70 pounds of pure muscle driven by a love to play.

If you do not know about the Challenger League, kids of all ages who have developmental and physical delays come together to play baseball and they are assisted on the field by typical developing kids who run with them, field with them, and simply guide them through the process.

Everyone gets to hit at least twice.

There is no losing team. Just winners.

Malcolm goes to run, drink water, and talk to the ladies. And wear red.

glove4glove5

 

Yep, that’s his batting helmet. Sometimes he wears it at home when he plays on the Wii. Or sleeps. Or just hangs out. Sometimes he makes me wear it.

But since seeing his favorite baseball and softball teams at West Forsyth already take the field, we needed to go ahead and get that new glove.

Malcolm picked it out himself. Rawlings of course.

And it is RED!

glove3glove1

Like the hair. Like the fire in his belly. Like the flames that burn the field when he runs after a hit like this:

At least until he sees a lady he wants to say “Hello” to.

Boy has priorities.

By the way, #7 is also the number of Mickey Mantle, one of the greatest switch-hitters to ever live. But more importantly, we went and got ice-cream afterwards.

Only one hand is needed for eating a cone. Glove was on the other.

Musings With Malcolm – You Play The Game With What You Have (And With What You Can)

Once again, my little man and I went to another event to cheer on some students except this tie it was not an athletic event, but rather an intellectual one.

The Piedmont Environmental Alliance and the Wake Forest University Debate Team helped to stage their annual debate tournament. West sent three teams.

Malcolm is not much on debate. When he argues, he usually lets it all out at once.

Red hair gets redder. Teenage angst comes a few years early. But he hung in there for a bit and helped cheer on some great students who went and did some rather great things. In fact, hardware was won, respect gained, and hard work rewarded.

Then Malcolm and I got some ice cream.

But as soon as we got home he went to his room (and apparently mine), got changed, and proceeded to prepare for his afternoon baseball/basketball practice.

You have to. There’s still daylight and we are supposed to get a blizzard tomorrow.

Bat, ball, glove, bases, baggy shorts, old hat, baseball shirt, and water shoes.

Why?

Don’t ask why. Just do it!

So here we go.

Again, notice the deliberate approach to hitting the ball. Then the bat flip, but it gets better. Because…

those pants that he stole from my drawer are some of my water shorts that I use for swimming and not matter how tightly I tie them, they fall.

But, no worries, he won’t let his butt hang out.

Decorum is still important.

Yet, while running, he senses that there might be other things to see. And behold, he comes out with…

a BIGGER bat!

So we hit some more. And then I notice that he has surfboards on his underwear.

And that makes the whole ensemble seem complete.

The ability to mesh swimming, baseball, basketball, baggy shorts, multiple bats, old hats, and water shoes into one fluid activity is not just imagination and creativity.

It’s beautiful.

Enjoy the snow, or lack thereof.

Musings With Malcolm – Next Season Started Yesterday, Games at West

One of the most endearing attributes that defines Malcolm is his ability to live in the moment. He can shake off a bad episode in no time flat and savor the good out of any situation.

And I am jealous of that. So what do I do about it?

Be a part of it.

In the past week and a half he has been to basketball, baseball, and softball games at his adopted high school – West Forsyth, The Home of the Titans – watching others do the very things he tries to do at home.

Of course, I am biased toward the school where I teach and where my daughter attends, and I will attend as many sporting events as possible because I believe that teachers support students outside of the classroom.

I also believe that athletics can be a fantastic outlet for students. In fact, I would wager that most of the athletes that I have in class do better academically when they are in season than out of season. The focus, the time management, the motivation all factor into success in the classroom. Plus, there are some phenomenal teams and coaches at West.

But there is another reason that I appreciate being able to attend so many sporting events: I get to take Malcolm and let him roam. And watch. And emulate. And socialize. And be a part of. And savor. And just be in the moment.

If you ever wanted to see how inclusion really works, go to an event with a child with special needs where people do not see that child as having special needs.

That happens each time Malcolm goes with me to watch a game at West.

If you are not too familiar with Down Syndrome, you may not know that most all people who have that extra 21st chromosome experience hypotonia, or low muscle tone. It can manifest itself in so many ways because muscles help control almost every action in the body like swallowing, digesting, breathing, even speaking. Any parent of a child with Trisomy 21 can tell you that keeping the child active is imperative.

So back to Malcolm. His ability to savor the moment, and his love of sports, and his ease at being with others at West has done something for him and me that money cannot buy – he wants to play sports which means he wants to move and use his muscles.

The very students who grace the hallways of the school where I work have been teaching Malcolm how to move and play ball.

And he lets me play with him.

What people do not see at home is a kid who goes in the back yard and plays basketball and baseball for long periods of time trying to do the very things he sees athletes do on television or in person at West Forsyth. In fact, he will put on his shoes and go outside in the middle of the night if he can because when he gets an idea, he goes.

You want to talk about the kid who shoots baskets well into the night to perfect his shot? Yep, I got one of those.

So, I thought I could give you some ocular proof.

This first video is Malcolm pitching. Notice the intense concentration. The presentation of the glove from the windup. And then like Fernando Valenzuela, he delivers the ball without even looking at the plate. That adds at last 5-10 mph. By the way, his headband is one of those stretch resistance bands. Only great athletes can make that look good.

This next video is of Malcolm pitching to his mother. She does happen to hit the ball, but an error is committed by the invisible second baseman. Damn him.

Notice the presentation. The looking the runners back to the bases. The hat. Man, what a great hat.

In this video, Malcolm rips a double into the gap and then stops to admire it. In fact, he starts to lead the clapping of the crowd. Also, notice the running from home plate to second base which is under the basketball goal. Who needs first base? Again, notice the hat and the bat flip.

This was earlier in the day at batting practice. Headband on. Game on.

And, of course we have basketball. Get your own rebound. Pump fake. And the put back.

There’s This Post I Read Entitled “That retarded kid that was kidnapped, probably didn’t even understand what was going on…”

special-needs

And it struck me in many ways.

I read it Sunday afternoon after I took the little man to get his hair cut at his favorite place – the Great Clips on Robinhood. The ladies there know him. He’s comfortable there. Lots of mirrors and when you are cute, why not look at something cute like yourself?

Actually, looking at himself and watching him look at himself is really a neat exercise. Simply seeing him experiment with facial expressions and respond to them is self-actualization. That, and he can keep an eye on me.

That’s after we go to the grocery store. The one he’s so familiar with. Knows the people. They know him. Drinks coffee. Says hello to the ladies in Aisle 3.

Then to that playground at the local Moravian church. And in the parking lot while finishing a song (because Malcolm is flat out rocking it!), I read the attached posting from a father of a child with Down Syndrome who wrote in reaction to hearing a radio listener calling in a radio talk show saying,

“That retarded kid that was kidnapped, probably didn’t even understand what was going on…”

I will be honest with you. I hear many words in the halls of a high school come from the mouths of teenagers. I have been called many things by teenagers (and parents) simply because if you teach long enough, you will encounter that.

But it’s not the word “RETARD” that upset me the most – that viscerally moved me in reading this.

I remember the episode in the movie theater where that young man was killed.

That episode in Chicago last week flashed on my news feed and I sunk.

How defenseless is my child with special needs?

I don’t know.

And it scares me.

If I tried to list every precaution that has ever been made to ensure his safety while trying to allow him to grow in a world that I want him to fit in then I would need many blogs.

But I will make sure that he knows the world that I am in.

I invite you to take a look a the posting. I am not asking for a response, but a sincere read.

https://www.linkedin.com/pulse/retarded-kid-kidnapped-probably-didnt-even-understand-mark-raff