Drexelle Park

@drexelle-park | contributor
Down syndrome. Apraxia. Epilepsy. After hitting rock bottom when grieving the challenges her son faces, Drexelle Park found her world reach heights unimagined thanks to the adventures of having a child with a disability. As a photographer, speaker and YouTube vlogger (Mighty Knightly), Drexelle shares the adventures of her son, Knightly, with his service dog, Cadbury, in accessing the world with his disability and how exploring the world in his eyes brings joy unimaginable. These stories of inspiration have been shared from Congress to Time Square to people around the world.
Community Voices

HOW A SERVICE DOG CHANGED OUR FAMILY

I never knew all the different ways a service dog could help.

Our son Knightly has been excluded because he’s different.  By the age of 5, he had been excluded from kid’s programs, even those for kids with Down syndrome, from church, and school.

So when we applied for a service dog, we hoped to God he’d just find a dog that would accept him as he is.

And what we got became so much more than that.

youtu.be/FXNJIOotR2g

Do you have stories of how having a pet changed your life?  Share your story and leave a comment below!

Community Voices

Distance Learning on the Road | How to Adventure with My Kid

I miss traveling.

While there is undoubtedly so much to be grateful for and so much to be careful about, I miss adventure.

After 5 months of staying home with our son, we decided to travel, to learn how to adventure however safely we could during coronavirus.  So we took to the road.

And it was breathtaking.

Now, with distance learning and wi-fi, education and adventure is just a car ride away.

To help prepare our son, Knightly, and to help any toddlers, preschoolers, kids, or people of all abilities to prepare for adventures on the road during coronavirus, we give you…our latest episode:

youtu.be/pjBOMwSdYdQ

Where is your next adventure?  Leave a comment below.  Share ideas for future adventures!

Community Voices

Top 10 Ways to Prepare School for My Kid’s Disability During

During distance learning, whether you’re in person, hybrid, or 100% virtual, what are the most effective ways we parents can talk about our kid’s disability at the school?

Here are ways we’ve learned from other families and disability organizations, tried and true tested methods to share about your kid’s disability with the school.  We’ve personally tested these ideas and seen them do wonders!

Disclaimer:

I know there’s a lot to think about with distance learning and you have a lot on your plates already.  So as we talk about how to share your kid’s disability, let’s acknowledge that these are optional.  These are ideas that are meant to help you, not to overwhelm you, and not to have one more thing to do. But these can be used to help your family in the future if and when you are ready to implement the idea.

Should I Even Talk About My Kid’s Disability?

Every parent, every school will have different beliefs about this question. For our family, it takes 2 seconds for people to recognize that there’s something different with our son, Knightly.

He has #DownSyndrome.

He has #Epilepsy so he needs to have medication.

He has #Apraxia which makes it difficult for him to say what he wants to say or for other people to understand what he wants.

At all times, he needs his device with him to be able to communicate.

And, bottom line, we want to set up our son and the school for a successful school year.

If we already know the ways that help him be successful, we want to share it. His educators and the families in the schools right now have a lot going on; so, if we can help them, we will.

Now, How Do You Do It?

Introducing the Top  10 Ways to talk to your school, classroom, other students, and peers about your child’s disability:

HOW DO I TELL THE SCHOOL ABOUT MY KID’S DISABILITY…DURING COVID-19?! | TOP 10 WAYS

www.youtube.com/watch

What powerful methods have you used to raise awareness and compassion for your child with a disability at their school? Share your wisdom!

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Community Voices

Puppies to Make You Smile

Know that feeling when you just need something to make you smile?

I found something.

A throwback as I breezed through adventures past.

It was our son’s first international trip and we had no idea how he’d last.

Our son has Down syndrome and apraxia, making his speech unintelligible to almost everyone but us. We hadn’t yet discovered Augmentative Alternative Communication where an app on his iPad could eventually be his voice. And the flight was difficult as he battled motion sickness during much of it.

When we made it to Korean soil, we were so happy to be on land. And Knightly looked completely thrown off, uncertain as to where he was.

As we finally arrived at the hotel, Knightly climbed out of his car seat and looked completely surprised.

These puppies went straight for him, officially being his first greeters in Korea.They played with him for a long time, trying to get him to pet them, jumping to grab at his chewelry, a piece of Lego on a necklace that at the time he would chew to help him when he was anxious.

At first apprehensive, he eventually warmed and relaxed, happily playing with each of them. And much to our pleasure over the next few days, they’d come by and greet him every time we left our hotel room.

It was just the thing to help Knightly, and us, smile.Even more now than then.Sharing with you this heartwarming video.

May these puppies help you smile today.

youtu.be/UX7fMgom_8M

What surprises helped you smile during this season?

Drexelle Park

How COVID-19 Has Changed Birthday Parties

Amid everything else it has changed, COVID-19 has transformed yet one other fundamental part of our culture:  The Birthday. My son, Knightly, has Down syndrome, apraxia and epilepsy and he just turned eight. Customarily, we’d host a birthday party. He’d be surrounded with laughter, conversation, and energy. And then, he’d be sung, “Happy Birthday” by our loud-voiced karaoke-loving family. And though he would be surrounded by love, he would spend a good deal of that party closing his ears, tearing up, and intermittently asking for people to leave. Crowds and noise have always been a challenge for him. We sought a neurodiverse community for inspiration on how people were celebrating their kid’s birthdays during COVID-19. And here’s what we’ve learned. Because of the coronavirus, people have learned to celebrate with: A reduced guest list of their closest community Virtual access that enable loved ones to participate Parades that brings neighbors and onlookers smiles as well Hygiene and keeping everyone healthy as a top priority And a party budget to prioritize what is ultimately the most essential Now having gotten to celebrate our son’s birthday during COVID-19, I have to say that I am actually grateful for us living in this season of the world. Celebrating Knightly’s birthday during COVID-19 led to a: Day of celebrating with just us: mom, dad, and son Room filled with $8 worth of balloons that, weeks later, he absolutely loves to play in Opening gifts delivered to our home where we could video record and share his reaction with the gift givers Connecting with loved ones via video chats Pre-recorded video with loved ones singing happy birthday at a pace and volume Knightly so happily enjoyed And, most of all, because much of it was via video, we now have an easy and memorable record of the day, a record we can replay as a social story to frontload and prepare him to enjoy future birthdays. So whether you want to celebrate alone, remotely, or through in person social distancing, here’s a first person step-by-step story of how to celebrate your birthday for toddlers, preschoolers, kids, and people of all abilities. How to Celebrate My Birthday During COVID-19 What have been your favorite ways to celebrate during COVID-19?  Share the inspiration!  

Drexelle Park

How COVID-19 Has Changed Birthday Parties

Amid everything else it has changed, COVID-19 has transformed yet one other fundamental part of our culture:  The Birthday. My son, Knightly, has Down syndrome, apraxia and epilepsy and he just turned eight. Customarily, we’d host a birthday party. He’d be surrounded with laughter, conversation, and energy. And then, he’d be sung, “Happy Birthday” by our loud-voiced karaoke-loving family. And though he would be surrounded by love, he would spend a good deal of that party closing his ears, tearing up, and intermittently asking for people to leave. Crowds and noise have always been a challenge for him. We sought a neurodiverse community for inspiration on how people were celebrating their kid’s birthdays during COVID-19. And here’s what we’ve learned. Because of the coronavirus, people have learned to celebrate with: A reduced guest list of their closest community Virtual access that enable loved ones to participate Parades that brings neighbors and onlookers smiles as well Hygiene and keeping everyone healthy as a top priority And a party budget to prioritize what is ultimately the most essential Now having gotten to celebrate our son’s birthday during COVID-19, I have to say that I am actually grateful for us living in this season of the world. Celebrating Knightly’s birthday during COVID-19 led to a: Day of celebrating with just us: mom, dad, and son Room filled with $8 worth of balloons that, weeks later, he absolutely loves to play in Opening gifts delivered to our home where we could video record and share his reaction with the gift givers Connecting with loved ones via video chats Pre-recorded video with loved ones singing happy birthday at a pace and volume Knightly so happily enjoyed And, most of all, because much of it was via video, we now have an easy and memorable record of the day, a record we can replay as a social story to frontload and prepare him to enjoy future birthdays. So whether you want to celebrate alone, remotely, or through in person social distancing, here’s a first person step-by-step story of how to celebrate your birthday for toddlers, preschoolers, kids, and people of all abilities. How to Celebrate My Birthday During COVID-19 What have been your favorite ways to celebrate during COVID-19?  Share the inspiration!  

The Importance of Empathy During These Difficult Times

My social media is flooded with posts about child trafficking being the issue that could “unite us all.” Most of us have children, all of us were children and therefore this issue affects us all. While it’s a beautiful sentiment, I think we, as the human race, can do better. We’ve become so disconnected from our fellow human beings that too many of us cannot empathize with a problem if it is not our own. Child trafficking is a tragedy and should be fought by everyone, but not simply because it’s personal to all of us. If child trafficking was only affecting Guatemalan children, or disabled children, or children with blue eyes, would it still have the power to unite us all? Before my son, Leo, was born, I knew nothing about the Down syndrome community. I did not know they were fighting for more opportunities in the workplace. I did not know they were fighting for immersion into typical classrooms. I did not know they were fighting for their lives in countries that were eradicating Down syndrome. I did not know any of these things because they were not my problem. I didn’t know anyone with Down syndrome, so I never looked into the battles those with Down syndrome were facing. I was disconnected. Now I advocate and implore people to care about these issues even if they do not feel connected to them. Imagine if instead of teaching our children to stand up for a kid who is being bullied, we told them to only interfere it is was one of their friends? What if I taught my daughter to stand up for kids with Down syndrome but to simply walk on by if it was a child with autism? Our children will emulate what we do, not what we tell them to do. Nearly all of us are guilty of this. It is natural to care about issues that are personal to us. We need that passion to drive and inspire change. What I am suggesting is that the time has come to remove that disconnect. Look over our fence and see our fellow humans facing their own trials, and in turn, make those trials our own. Empathize with Black Americans who don’t feel safe. Empathize with people at high risk for COVID. Empathize with people who have disabilities. Empathize with victims of child trafficking. Empathize with people you do not know. Empathize, connect, unite.

Drexelle Park

How to Teach Kids With Disabilities to Wear Face Masks

Going outside has changed. The world is changed. Cue Galadriel from “Lord of the Rings:” “I feel it in the Earth…Much that once was is lost.” When I Google “accepting change,” a wiki pops up saying to embrace change, know its inevitability, put it in perspective and look on the bright side. Great. Now, how do I do that? And how does my kid do that? The second I step into a public place, on comes the face mask. I’m distracted with how it sticks to my lipstick (OK, chapstick, because seriously what’s the point of wearing lipstick with these things on?). I tell myself to just breathe, reminding myself I can breathe as my subconscious brings up memories of asthma. Embrace change. Know it’s inevitable. Yes, check. Intellectually, I get that. Putting it in perspective sounds simple enough. This is what helps keep others safe, keeps me safe. I remind myself of that as I look at others walk by, unable to greet them with a smile or read their emotions. People watching has changed. Now, look on the bright side. I have to change the story I’m telling myself. While acknowledging the losses, I need a new story to help inspire me to look on the bright side. I need a new story to help my son see the bright side. Channeling the kid in me, I try to recall what inspiring story about using a mask can touch the heart of a kid. As I fold the laundry, I see the t-shirts my son loves to wear: Teenage Mutant Ninja Turtles, Star Wars, The Avengers. Heroes. And I found the story. Going outside has changed. When we go outside, we put on the mask. Why? Because that’s what heroes do. There’s the bright side. In our own way, we get to be heroes. Introducing our latest How-To video: Let’s Wear Face Masks A step-by-step guide on the why and how to wear face masks for toddlers, preschoolers, kids and people of all abilities to promote safety and prevention of the coronavirus (COVID-19)! For more on parenting during quarantine, check out the following stories from our community: Please Wash Your Hands Year-Round — Not ‘Just’ Because of the Coronavirus Creative Activities to Try With Your Kids While We’re Isolated at Home How We Can Promote Continuity in Special Education Programs During the COVID-19 Pandemic What to Do When Your Child on the Autism Spectrum’s Routine Is Disrupted by the Coronavirus What It’s Like Parenting a Medically Complex Child During the Coronavirus Outbreak

Drexelle Park

How Video Modeling Has Helped My Son With Down Syndrome

“It’s just too hard for him.” Over and over again, we would hear this phrase. Because of his disability, my son, Knightly, had been forced out of school, church, and children’s programs by the age of 6. Aside from having Down syndrome and Apraxia, he’d get easily overwhelmed by things like: assemblies group pictures or loud noises from laughter to airplanes So often, we’d hear people say, “it’s just too hard for him”. Then, we discovered it: Video Modeling. Or as I affectionately call it: “How-to videos for all abilities.” And they’ve worked like magic. In the past year we’ve been using them, Knightly has: Taken group pictures (thankfully with all his favorite Disney characters before Disneyland closed!) Been on stage to a cheering assembly Rode an airplane four times AND, do you remember that school that forced him out?  Knightly’s old school said he had to be in a separate school in a separate special education only class with kids “just like him” in order to achieve his academic goals. And because of the 30+ years of research that said otherwise, we didn’t agree, so we found a different school. His old school thought it would take one whole year in a special education only setting to get Knightly to achieve his academic goals. In his general education setting, it took him three months. He achieved all his academic and 80% of his IEP goals. For the past year and a half, he has been fully included in a General Education class 100% of the day, now all services pushed in. And one-by-one, he has had to face the situations that once completely overwhelmed him. And he did. What was once impossible for him is now possible. What once required he be separated is now accessible. It wasn’t just too hard for him. He just needed to take one step at a time. Let me show you how we did it. Allow me to present an example of our most recent How-To Video: Let’s Video Call: https://www.youtube.com/watch?v=RvO-5bxbTP0 Now, there’s plenty of research in the past few decades that validate the power of video-based interventions from Haring, Breen, Weiner, Kennedy and Bednersch (1995), Biederman & Freedman (2007), to Mechling, Ayres, Purrazzella & Purazzela (2014). I’d read it to you but I’d lose you and myself in the process. So, let’s get down to what matters. Is there any issue (like behavioral, social, academic, communication, play) with which one of your kids is struggling? Guess what? This can help for that too. So, how do you do it?…and with the least amount of work? Let’s make a video…the easiest way possible. HOW-TO VIDEO MODEL 1. Choose the issue (e.g. making a phone call). 2. Do-It-Yourself and jot down what you are doing step-by-step (every freakin’ step) that the kid needs to do. 3. Create the script in first person at the kid’s level (e.g. I get the phone. I look up the name. I dial the number and press call). Here are some KEY TIPS: Keep It Simple — Simple steps. Simple tasks. Model Correct Behaviors — Are there any major behaviors you definitely want to address? Mention the positive behavior that will replace them. I often need to throw in: “I use nice hands” at the key moments where I know it’s a challenge. Model Communication — With Apraxia, Knightly’s speech is generally unintelligible so he has to utilize an Augmentative and Alternative Communication (AAC) device. I always model how to use the AAC in the video. Throw in Favorites! — Throw in favorite people, places, things, food, and words in the video that’ll make them go, “OOOH OOOH I WANT TO WATCH MORE OF THIS!” 4. Get videogenic volunteers who speak clearly, slowly and will catch your kid’s interest (always great to include their classmates, relatives, people they love) 5.  Audio record one person saying the script (in a quiet car is easiest). Use the iPhone’s Voice Memos app or just google your device’s audio recording app. 6. Video record your volunteers acting out each line (or, even easier for you, ask them to record themselves and just email you the video). KEY TIPS: Record in the order outlined on your script horizontally in good lighting as close up as possible (the farther away, the more boring it is for anyone to watch) 7. Edit i n your video software (iMovie for Apple users is super easy).  If you listened to my steps above, you can just select each video in order and add the audio and VOILA! Done. You can even add music to make it more interesting. 8 . Upload on YouTube as “Unlisted” so only you and those with a link can view it. Then… CONGRATULATIONS!  You made your first video! IMPLEMENT THE VIDEO MODEL 1. Frontload Video with a Positive Reinforcer I’ve found that showing the video once a day for the week prior to the event happening during a yummy breakfast works beautifully for Knightly. 2. Show Video in Real Situation I will then place Knightly in the specific situation, playing the video right before I do. Then, I’ll play it again during the situation. I play it by ear to see how far he can go, never usually doing the entire situation at the first exposure, but I always… 3. End the Situation with a Positive Reinforcer To set him up for success, I make sure to start and end on a happy note for Knightly to build positive associations. 4. Baby Steps to Victory Take it one step at a time. Ensure you and your child feel confident to do the next thing. 5. Update As You Go Celebrate and encourage more victories by updating the video with footage of the kid as they achieve each step. OK, WOW, I know that was a lot of steps. But, when you do it a few times, you’ll get the hang of it. And more than that, you’ll start to reap the benefits and see how much it’s worth it! VIDEO MODELING LIFEHACKS 1. Google ‘em. It may exist already!  Then, you don’t have to do anything…and that’s the dream. 2. Check Out Below. These sites already got a bunch of ‘em! MightyKnightly’s How-To Videos for All Abilities Speech and Language Kids Social Skills Videos GemIIni Autism Internet Modules Video Modeling Steps   3. Share! Less work for all of us! Powerfully showcases inclusion where a neurodiverse population can help all people. AAAAND because this actually helps more people than you know! We had made a video Let’s Go to the Dentist and shared it with his dentist.  She shared it with her clients and we were floored to hear the stories she’d tell us. Kids that refused, screamed when even entering the dentist’s office, were now willingly entering and sitting through the entire procedure while watching the video. And should that really surprise us? How many of us look at how-to videos all the time to learn new skills? How many of us watch inspiring documentaries that empower us to eat healthier, exercise, and travel?  And how many of us around the world today are battling with situations that are currently overwhelming for us?  I think all of us can think of a global issue right now that currently is just too hard for us. Just like with my son, just like the kids you’ll be creating these for, we all just need: To take one step at a time. So try to video model. For your kids. Maybe even for you. I dare you.  Then, send me your videos and let me know what lifehacks you learn so we can all grow in this together.