I Just Became the Father of a Child With Autism

Actually, I have been his father and dad for over ten years.

But this past week, our family received a diagnosis that our son has autism. So now we are a family with an autistic child who happens to have Down Syndrome. Or we have a child who just happens to have both Down Syndrome and autism.

Or we have a child whose name is Malcolm who chooses not to be defined by terms, so we shouldn’t define him with labels or a diagnosis.

I like that last one the best.

Maybe what we received this past week is a huge clue and more answers than we had in how to best approach helping, nurturing, communicating with, and advocating for Malcolm.

One of the greatest gifts that someone can give to another is an unabashed and honest view of the world that the other did not know through another set of eyes and filters.

If you are around Malcolm, you might immediately sense his acute ability to be in the present time. He is not consumed with what happened in the past or what might happen in the future. He is totally grounded in the now. I envy that. And he is very open with his view of the world and how he sees things.

But there were some behaviors that his mother and I could not really understand under the scope of someone who has Down Syndrome. So we explored. We questioned. We wrestled. We asked for help.

And we found out something.

I would be untruthful if I did not say that I am still a little in surreal shock. But I would also not be truthful if I did not say that there is a lot of relief. DS-ASD is very real. DS-ASD is Down Syndrome – Autism Spectrum Disorder.

I feel like I just got to know my kid a little better, and I think we got another clue in how he views the world and filters what he actualizes.

He’s still Malcolm.

Think of it this way: we just got handed the actual prescription of another lens that he uses to sense his world.  A better idea of what might be happening. And a better idea of how we might be able to help him make sure that he is as comfortable in this world as he can be.

glasses

It’s like we found the “bright” setting for the headlights while driving and we can see a little more of the road, but more of the surrounding area. The more we see, the more we know is around us.

So what do we do as parents? More of the same in many respects. We love him actively. We remove obstacles when we can and help him overcome his own obstacles. We research and be inquisitive. We explore avenues that may hold keys to helping him.

And we advocate like any parent would for his or her own child.

This kid did not change because of a diagnosis. He still wants to get doughnuts, swim at the Y, go to West Forsyth to see his favorite people, pet his dog, watch his movies, play basketball at weird hours of the day and night, and ask for a hug.

Same kid.

With more aware parents.

 

 

 

“For the first time in its history, the Gerber spokesbaby is a child with Down syndrome”

Don’t think that this does not make me smile a little more than a lot – https://www.cnn.com/2018/02/07/health/first-gerber-baby-down-syndrome-trnd/index.html.

And who wouldn’t if there was someone like this smiling back at you with the most sincere display of joy?

180207150425-gerber-2018-spokesbaby-exlarge-169

 

Reminds me of someone I know.

Malcolm6

Malcolm

 

 

 

 

 

 

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

I am the proud parent of  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 named Malcolm who happens to have Down Syndrome and an IEP.

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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 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.

And in my twenty-year career, not many things have given me insight to how much schools in North Carolina have been hampered by under-funding and ill-gotten policies in allotment for teachers as going through an IEP process.

Remember that an IEP is a legally binding document. As a parent, I want to do everything for my child to help ensure his chances at success. As a teacher, I would want to be able to offer anything that could help a student. I see both sides. In an IEP meeting for my son, I am a parent. But as a teacher, I can reflect on how teachers and schools look at IEP’s.

The last IEP meeting we had for Malcolm was a great example of simple collaboration. The teachers in the room wanted what was best for Malcolm. The specialists in the room wanted was was best for Malcolm. The parents felt like they were listened to.

The people made it work. But imagine if there were more resources and time at their disposal. And does this happen at all schools? What we got in out last meeting was a way to look at Malcolm in a holistic way.

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.

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 play time.

Or his baseball hats, specifically his Titan baseball hats.

IMG_5473

The Gift of Living in the Present – A Musing With Malcolm

“Thirty-six,” he said, looking up at his mother and father. “That’s two less than last year.”

“Darling, you haven’t counted Auntie Marge’s present, see, it’s here under this big one from Mummy and Daddy.”

“Alright, thirty-seven then,” said Dudley, going red in the face. Harry, who could see a huge Dudley tantrum coming on, began wolfing down his bacon as fast as possible in case Dudley turned the table over.

Aunt Petunia obviously scented danger too, because she said quickly, “And we’ll buy you another two presents while we’re out today. How’s that, popkin? Two more presents. Is that alright?”

Dudley thought for a moment. It looked like hard work. Finally he said slowly, “So I’ll have thirty … thirty …”

dudley

“Thirty-nine, sweetums,” said Aunt Petunia.

“Oh.” Dudley sat down heavily and grabbed the nearest parcel. “Alright then.”

– From Chapter 2 of Harry Potter and the Sorceror’s Stone

There are still unopened Christmas gifts in our home with Malcolm’s name on them. He’ll get around to them when he gets the inclination. And it’s not that he is ungrateful or apathetic to the idea of gifts.

It’s because he has an indigenous understanding of living in the present.

Every time that Malcolm has a birthday or Christmas, there are always gifts that will not be opened up for a while. Sometimes he opens something and it needs to be played with right then and there.

For a long time.

Because it’s interesting.

Sometimes he opens a gift and goes to ask for help in how to use it. He forgets maybe that there are others, but for that moment he has placed his full attention upon something else.

He’s good at focusing his attention on one thing and it usually is something in front of him in the present, not something that already happened in the past or something that may happen in the future.

Malcolm knows that the best present is the present – moment that is.

If I could live in the moment like this kid does, then worry and anxiety would not have as much a hold on me. So, I do the next best thing.

Hang out with someone who does live in the “now.”

Someone like this boy right here who wanted to get some ice cream in the Food Court at the mall…

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… knowing that there were still presents to unwrap at home from a week ago.

 

“I would not change you for the world, but I will change the world for you.”

Those words were said by Amy Wright, a mother of two children who were born with Down Syndrome and the founder of Bitty and Beau’s Coffee Shop in Wilmington, NC.

bitty

On Sunday she was named CNN’s Hero of the Year (http://www.cnn.com/2017/12/17/world/amy-wright-2017-cnn-hero-of-the-year/index.html).

If you are the parent of a child with Down Syndrome, what Wright spoke about becoming an automatic advocate could not be more true. She explained that the role of a parent and advocate is “trying to make people see the beauty in their lives that we see.”

The CNN report also stated,

After all, people with physical and intellectual disabilities can be judged by their appearance alone. When Wright and her husband learned that 70% of the disabled are unemployed, they decided to become a part of the solution — for their children and others.

I got one of those “others.”

Malcolm

Malcolm has so many heroes that it would be impossible to name them all.

I wouldn’t change him for the world, but I am grateful that there are so many people in his world who want to change the world for him and others.

And yes. Malcolm drinks coffee.

I see a trip to Wilmington coming.

Happy Holidays.

 

 

 

 

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.

IMG_5473

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