Malcolm’s Minions – A Chance to be Ultra-Cool For a Day

This Sept. 30th, the Piedmont Down Syndrome Support Network (PDSSN) will be hosting its annual Buddy Walk.

For those who are not familiar with the Buddy Walk, here is the blurb from the PDSSN.org website:

The Buddy Walk® was created by the National Down Syndrome Society (NDSS) in 1995 to celebrate Down Syndrome Awareness Month in October and to promote awareness, acceptance and inclusion of individuals with Down syndrome.

It also raises funds for the PDSSN to help with programs and services for families who have members with special needs.

This year’s Buddy Walk will again be held at West Forsyth High School where it has been held for the last five years.

If you want to have a great time for a great cause then come on out. And even if you can’t make it to hang out with the cutest red-head with blue eyes who just happens to be genetically enhanced, then you can still help by sponsoring.

Malcolm’s team is called Malcolm’s Minions. The link is http://pdssnhome.ezeventsolutions.com/BuddyWalk/MalcolmsMinions.

Thanks for considering.

And if you need a little more motivation, then:

 

 

 

 

Being a Teacher Who Lives With a “Special -Needs” Child

 

I am the proud parent of a child. Actually, two children. One is a highly intelligent and academically driven young lady who looks like her mother. The other one is what some in the educational field might call “special.”

He looks like his mother as well.

Specifically, that child has Down Syndrome and needs modifications in school that help him to learn optimally.

Some may say that I am the parent of a Special-Ed, Down Syndrome child.

I rather think of being a parent of a child who happens to have Down Syndrome and an IEP.

And both my kids are special to me.

I also teach high school coming into contact with as many different personalities and learning styles that can possibly be contained in overcrowded classrooms with overarching standards.

In my almost twenty-year career, nothing has made me more attuned and more aware of the spectrum that exists in all classrooms for learning than being a parent of a child who happens to have Down Syndrome and needs modification in school.

That includes:

  • The need to keep engaging and reengaging students.
  • The need to have individual tie with students to focus on individual work.
  • The need to allow students to engage with each other collaboratively.
  • The need to allow students to be exposed to various options for learning.
  • The need to expose students to other students’ methods.
  • The need for sufficient resources and space.
  • The need to revisit parts of the curriculum to ensure mastery.
  • The need for unstructured time spent in curious endeavors.
  • The need to offer some choices in what is pursued as far as learning is concerned.
  • The need for students to be exposed to all subject areas as each student is intelligent is multiple ways.
  • The need for students to have self-guided learning.
  • And the list goes on and on.

When you live with a child who happens to have special needs, you learn to celebrate tiny victories that mark moments of growth. But before you can do that you have to learn what those moments of growth really are. You have to learn how to be more “holistic” in your approach to “assessing” what is learned and mastered.

When you live with a child who happens to have special needs, you learn to not necessarily compare your child with others. Nothing could be more self-defeating. What you learn to do is to relate with other parents and teach your child to relate to others. If any comparison needs to go on, then compare what you once were to what you would like to be.

So that “special” child that I live with probably has taught me more about teaching because I think that it is my job to help each student grow. If there is growth, the achievement comes.

What we have in the bureaucratic view of public education that exists in government buildings is a mindset bent on comparison, narrow in its scope, and focused on a product rather than a process. That mindset also depersonalizes students and looks at formulas to set policy on class size, resources, and what it means to have “learned.”

My child who happens to have Down Syndrome and needs modification in school could teach these people so much.

Just don’t take away from his pool time.

Or his baseball hats, specifically his Titan baseball hats.

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Dear Secretary DeVos, From Malcolm, A Special Normal Public School Kid

Dear Secretary DeVos,

My name is Malcolm and I just finished third-grade in the Winston-Salem/Forsyth County School system. I have vibrant red-hair and blue eyes like my mom, wear cool glasses, have a wicked follow through on my jump shot, and am quite the dancer. My dad also wears glasses, but he does not dance very well nor has much hair. My sister is in high school. She is very smart and she helps me with my homework.

I also have an extra chromosome because of a condition called Trisomy 21. You may know it as Down Syndrome. It does not define me. It just is, but I do need a little extra help in school and in learning other skills on how to be independent.

I am having my daddy write this letter for me. He is a teacher in a public high school. In fact, I spend a lot of time at his school going to games and functions. A lot of people know me there like they do at my own school. My having an extra chromosome doesn’t seem to scare them so much because in the end we are all more alike than different anyway.

But I am worried about some of the things that have happened in public schools since I have started going. I am also worried about how students like me are being treated since you and President Trump have been in office.

My daddy has noticed you like this thing called “school choice” and that the budget that you and Mr. Trump like puts more money into this. Yet it really seems to have done a lot to weaken public schools like not fully give money to them or give them resources so that all kids in public schools can be successful. It seems that some money went to this thing called “vouchers” and some has been used to help make other types of schools – schools that will not accept me.

When I got ready to go to school a few years ago, one of my grandparents offered to pay tuition at any school that could help me the most, but none around here would take me because I have a certain type of developmental delay. Doesn’t seem like I had much choice.

But the public schools welcomed me with open arms. And I am learning because of the good teachers and the teacher assistants. Imagine what could happen if my school could have every resource to accommodate my needs.

When people in power have taken away resources, teacher assistants and forced local school systems to make due with less money, then all students, especially students like me, are not being helped as much. And it’s not our teachers’ fault. It’s the fault of those who control what we get.

You and Mr. Trump control a lot of what we get.

My family is very aware of the Individuals with Disabilities Education Act. It says that I am entitled by law to a sound and quality public education that will work to overcome my obstacles like any other student. We were surprised that you were not aware of IDEA when you were asked earlier this year. That law is my lifeline. And there are many students who do not have the advantages that I have. Some have more obstacles and more physical hurdles to overcome. They really need for you to step up for them. Part of your job is to protect that law.

But this budget that you seem to like does not really help to strengthen that.

The Individual Education Plan that I have that my school and parents put together is backed by federal law. That means that you are supposed to protect it.

But this budget and your actions do not seem to want to honor that.

I think you should stand up more for students like me. I think you should fight more for public schools. I think that you should be loud about it. Make everyone know your commitment to public school children and their teachers and the staffs at each school as many times as you can.

I can be loud. It’s easy. I let my presence be known all of the time. It’s how others know I am there. But I have to be there.

It seems that if you are the leader of the public schools in the nation, then you would be more of a champion for public schools. You would show up at places when asked to talk about what is going on in schools.

Like accepting invitations to places and conferences.

I know that you were invited to speak at the Office of Special Education Programs Leadership Conference this next week. My daddy says that you have never met with a special-education advocacy group before. Why?

Why have you not accepted the chance to talk to the very people who need to hear you talk? These are the people who help make sure that I have what I need because I depend on the public schools.

In fact, my daddy says that you do not really talk to those who really need you to explain your views on education and why you seem to like some types of schools more than others.

Why?

Shouldn’t you be willing to talk?

My daddy goes to work every school day and teaches the students who show up for school. He does not get to choose his students. But that does not matter to him.

I go to school and my teacher did not get to choose what students she got to have. But she teaches me anyway.

If you are the secretary of education for the whole country, then shouldn’t you be willing to go anywhere to talk about school?

Sincerely,

Malcolm
Special Normal Public School Kid

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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.

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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.