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.

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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.

 

 

 

“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.

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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.”

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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:

 

 

 

 

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 think 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.

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

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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

 

If You Need Assurance in the Younger Generation, Then I Have Some

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For the past six years, West Forsyth High School has hosted the Piedmont Down Syndrome Support Network’s Buddy Walk, an event that raises funds and awareness for people with Trisomy 21 and their families.

And in the six years that West has hosted the event over $300,000 has been raised. Money is used to help with programs and other expenses that help the PDSSN to aid families with children with special needs.

And there will be times when I will post on what the PDSSN has one for our family, but there is an element to this event that speaks so loudly – the student volunteers.

In the past six years, West Forsyth students have volunteered their time and resources to help make this event possible.

On average, over 150 students will come out to help with food, setup, cleanup, games, raffle tickets, registration, and other duties. And never has a student reported a negative experience helping out with the Buddy Walk. In fact students from other schools high schools have come to help.

And there is the inclusive nature that this creates. When typical young people sometimes meet those who are differently abled, it can be a tad bit awkward. Not these students. They jump right in and engage. And kids like mine gravitate to that.

In a world where adults create divisions simply based on race, religion, presidential preference, income, and creed, it is redeeming to know that many in our younger generation don’t subscribe to exclusionary habits. The students that I witnessed at the Buddy Walk this year were about community, tolerance, acceptance, and relating to others.

In fact, that has been the case every year.

If anyone needs any assurance that our students care about what happens in the world that we leave to them, I invite you to go attend a service project that a high school service club engages in.

You will see something special that has no monetary amount associate with it.

 

Duck Me? No, Duck You! – Musings About Malcolm, Chapter 4

When you become the parent of a child who happens to have Down Syndrome, your mind can fly to a lot of places, especially the future.

My wife and I had a prenatal diagnosis of Malcolm’s extra genetic material. It’s quite startling to have this preconceived expectation of what your child will be like instantly changed by a medical test. Can’t lie about that.

Sometimes you can get caught in a dream of having a child who goes on to do great things in the eyes of others, and then you are told that there might something “wrong” with the child both physically and developmentally.

But here’s the weird thing. There’s nothing wrong with him. He’s just perfect in his way.

When Malcolm decided to come into the world twenty-something days early with his plume of fire-red hair, an older nurse said something about Malcolm being one of “those” children. It struck both my wife and me fairly hard that he was already being stereotyped, and there are a lot of stereotypes surrounding children with Down Syndrome. But Malcolm seems to have debunked most all of them. In fact if you meet people with Down Syndrome, ten ou might realize that most stereotypes associated with them just do not have much merit.

  • They are always happy.” Well, you didn’t tell him that he was supposed to go to summer school this morning and have him cuss you in his own way. Twice.
  • They are always very loving.” Well, unless he knows you he may just tell you to get away, although he is a bit of a womanizer. Serious game that boy has.
  • They are so compliant.” Hell no. Try and get him to do homework.
  • They are socially limited.” Actually, I have never met a boy who breaks down barriers more with kids of his age than Malcolm does.
  • They are always so honest.” Nope. He’s manipulative, especially if it involves getting certain foods like Cheetos Puffs, otherwise known as “Cheesy Dibbles”.
  • They are not as coordinated.” Actually, Malcolm is a bit of a ninja. It is not uncommon for him to walk into the living room late at night while I am grading papers and just appear out of nowhere to make me involuntarily do something messy. Having a full gallon of milk placed on my pillow in the middle of the night and then waking up to a smiling, yet thirsty child who whispers “Milk? Is not out of the ordinary either.”
  • They like to dance.” Actually that one is true. The boy has moves. It’s on video.

But here’s the one thing that Malcolm does that I really wish I could do – live in the moment. He is totally committed to the now. Especially when it pertains to outdoor adventures. The boy loves being outside, so much that we had to put a fence in the back yard because he likes to go outside so much, even in the middle of the night.

This adventure involves ducks. They quack. They waddle. Malcolm likes that.

So last weekend we went to the Bull’s Hole Duck Race on the South Yadkin River in Cooleemee. Why? Well…

First, the Yadkin might be the clearest river ever. No. Secondly, it helps out a worthy cause. Third, we had never been to Cooleemee. Even spelling the name Cooleemee is rather cool. So what do you do when you get there?

You “sponsor” some ducks for a price and get a ticket with a number(s) on it. The number corresponds to a rubber duck that will be in the race. When all tickets are sold, all ducks are dropped in the same place in the river to be led through the rapids by the flow of the river and whoever has the ticket for the duck which crosses the finish line first wins the jackpot.

So Malcolm is all into this whole duck race. It is the moment.

Here he is summoning some higher power to make his duck be first. Something Gaelic I believe with a hint of yodeling.

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Then they drop the ducks from a front-end loader of a tractor that happens to be in the middle of the river.

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And they are going! Some do go faster than others. “Float! You damn duck!” I think he is taking this way too seriously, but it is a moment.

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“Dammit! I didn’t get any money that I would never spend because I am not materialistic!” He cusses sometimes. Which is another thing about kids with Trisomy 21. They pick up words more quickly than you think. Especially interjections.

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We did not win any money. Not a big deal really. Why? Because we had another moment to be in. There were ladies to talk to, music to dance to, and milk to be drunk. We were outside. That was all that mattered.

And you wonder what you were ever worried about when he was born.