The Most Terrifying Moment

Living in an era of the Internet, where information is disseminated easily and rapidly, deciding what information and how much detail to share can be difficult.  We've received multiple inquiries about our silence on social media lately and finding the appropriate response has been a challenge.  I consider Instagram to be a digital photo album where we preserve memories.  However, there are some moments in life that we'd rather not remember.

While this story I'm about to share is not a secret, it is personal.  And sometimes social media can feel impersonal, frivolous, and even invasive.  However, we've always strived for honesty, and more importantly, we realize the inquiries are coming from a place of genuine concern.  

Last Saturday night, Leanne had a choking incident so severe that she turned blue and lost consciousness.  An ambulance was called and fortunately, she began breathing before the paramedics arrived.  

Given that we are currently experiencing a global pandemic, the paramedics confirmed that her vitals were strong, and advised against taking her to the emergency room.  Leanne's physicians have been notified, and she is scheduled to have an EGD (Esophagogastroduodenoscopy) next Wednesday.  

That incident was the most terrifying experience of my life.  But in reflecting on that traumatic moment, Mr. (Fred) Rogers famous quote comes to mind, 

"Look for the helpers.  You will always find people who are helping." 

Everyone was outside, and when I went to the door and screamed for help, multiple neighbors came running.  Travis dialed 911 and followed the instructions provided by the dispatch operator.  Our neighbor appeared in the doorway and he picked Leanne up and attempted to do the Heimlich.  He did not leave her side until the paramedics arrived.  His wife lead the triage, addressing the needs of the various family members.  Another neighbor ran to get a doctor who lives down the street.  One neighbor ushered Biddy outside while other neighbors rallied to distract and calm my children.  And one neighbor held me while I sobbed.  

The heroism of this group of people who heard my cry for help, had no clue what was happening, and came running anyway is something that I will never forget.  When the EMT's arrived, one asked if everyone standing in our home was family and my next door neighbor replied, "We're neighbors but we are a family."  And that means so much to someone who has so little family left.

At Leanne's pre-op appointment today, I tried explaining how terrified I felt and the doctor said, "I get it; she's your person."

I thought about that for a long time afterwards and ultimately concluded that Leanne is not my 'person'."  Travis is 'my person'."  Leanne's role in my life transcends human relationships for me.  She's like a guardian angel who has always been by my side.  I don't know who I am without her.

And that leads me to why I am sharing this story: When Leanne finally regained consciousness and calmed down, she addressed each of my neighbors individually and insisted that they pray for her.  She named their children and insisted that their children pray for her.  Leave it to our diva to demand a prayer vigil in her own honor.  Travis says "That's the moment I knew she was okay." 

To that point, please keep Leanne in your thoughts and prayers as we take the necessary measures to ensure that her health is restored.  

The blogosphere prayer warriors have always been there for us and we truly appreciate your concern and support.

Coronavirus 2020: A Social Story

Hello to our virtual friends!  Never before have we experienced the importance of our ability to connect online like we are experiencing in the wake of the Coronavirus.  Difficult scenarios like this one present an opportunity to see the best that humanity has to offer; even in isolation, people are uniting to support one another through this unprecedented challenge by sharing ideas, prayer, and uplifting stories.

Here at our house, we're trying to put a positive spin on things.  The girls have been finding creative ways to entertain themselves.  You can find more of our adventures documented on Instagram @CatfishwithKetchup.

But for individuals with special needs, a disruption in the daily routine can be upsetting no matter how you spin it.  That's when social stories come in handy.  After a chain of Leanne's activities have been canceled, it was time to break the difficult news to Leanne that she could no longer go to work.  Josie needed to know that she would not be returning to school anytime soon.  And they needed an explanation that was neither alarming nor ominous.  So I did what I always do and I wrote a social story.  

I made a generic version of it to share with our blog followers.  You can find it HERE.  If you're inclined to write your own custom social story, check out the tips that can be found in this post.  

We read through the social story as a family and then the girls asked questions.  Leanne asked what she's supposed to wear; her daily schedule dictates what she wears whether she's going to the gym (exercise clothes), going to work (uniform), or volunteering in the community (business casual), or church (formal).  This is the type of logistical question that I would expect when her routine has been disrupted.  Then she asked, "Is my birthday canceled?"  Bless. Her.  Heart.  I had to fight back tears on that one.  I told her that I could not promise friends nor a meal at the restaurant of her choice, but that nothing would stop us from celebrating HER here at our house.  

In these uncertain times, we must get resourceful and creative.  But above all, let's focus on the most important thing: loving one another.

  

Stay home.  

Stay healthy.  

Merry Christmas and Happy 2020!

What a busy holiday season it was for the six of us!  On Christmas morning, we exchanged gifts and then rushed off to the airport to fly out to visit Travis' family.  We had a wonderful time out West with YaYa, Papa, Uncle Corey, Aunt Sarah, and Cousin Abby.  For more photos and updates, refer to our Instagram page @CatfishWithKetchup.

Wishing you a happy and healthy 2020!

Holiday Gift Ideas: ABA Favorites

When Elizabeth first approached me about doing a round-up of all my favorite ABA toys, I thought to myself, "Sure thing! I have a ton of great ideas to share." Forgetting that a "ton of great ideas," meant that I had to narrow them down and combine them into a format that parents would find useful. I reached out to fellow teachers, therapists, and parents.  With their help, I came up with an extensive list containing over 100 types of toys sorted into 10 separate categories. I chose my favorites from the list and used them to create this post.

But first, let me tell you a little bit about myself.

My name is Dana Howell and I am a BCBA (Board Certified Behavior Analyst.) I have spent the last 10+ years working with children in multiple different capacities, ranging from speech-language pathology assistant to special education teacher and everything in between. I started my company Behavioral Interventions And Solutions, LLC (BIAS) because, over the years, I have developed an interest in helping parents learn valuable strategies to assist with developing skills and managing behavior within their homes. There is so much information out there for parents to digest, and it is essential to know that it is coming from a source you can trust.

Ok, enough about me. Time to get back to toys!

Some of my favorite toy brands that you will see recurring throughout this post include Melissa and Doug, Educational Insights, Peaceable Kingdom, Learning Resources, Learning Journey, and Fat Brain Toys.

Each of these brands incorporates a variety of educational skills into their toys. Not to mention that they are colorful, durable, and appeal to children and adults alike.

I then divided my favorite toys into eight different categories: cause and effect, puzzles, open-ended, close-ended, board games, sensory, fine motor, and gross motor. You will quickly see that many of the toys I highlight in this post can actually fit into more than one category.

Cause and Effect Toys

Children learn through exploration, and when they have access to cause and effect toys, they begin to understand that their actions make things happen. Cause and effect toys are designed to increase hand-eye coordination and often follow a repetitive sequence that is essential in helping children develop early communication and problem-solving skills.

My favorite cause and effect toys include musical instruments, roll towers, toys that pop/spin/move/make a sound at the push of a button, stacking cups & dump and fill style toys.

Close-Ended Toys

Toys that are considered to be close-ended have a distinct stopping point. When all the pieces are put together or taken apart, the activity is finished. Children who struggle with attention or task completion will often benefit from close-ended tasks.

My favorite close-ended toys include pattern blocks, shape sorters, Mr. Potato Head, ring stacker, Snap and Sort, lacing cards/beads & single-inset puzzles.

Open-Ended Toys

On the other hand, open-ended toys are toys that can be used and over for hours on end. These toys typically require the use of a child's imagination and creativity. Open-ended toys are designed to increase language acquisition, social skill development and self-expression.

My favorite open-ended toys include Legos, Magna Tiles, pretend play sets and costumes, marble mazes, blocks, train sets & Brain Flakes.

Puzzles

Puzzles are one of those toys that become a category of their own. They range in complexity from single-inset to jigsaw and can incorporate a variety of skills such as spelling, matching and imaginative play. Most puzzles are close-ended activities and also are an easy way to increase fine motor skills in children.

My favorite puzzles include matching puzzles, floor puzzles, sound puzzles, alphabet/spelling puzzles & magnetic dress-up dolls.

Board Games

Board games are a great way to get the whole family together for an activity. Children learn essential skills such as turn-taking, following directions, waiting and sportsmanship when they participate in structured activities like playing a game. Some games even focus on teamwork and cooperation, encouraging all players to work together to achieve a goal.

My favorite games include anything by Peaceable Kingdom or Educational Insights, Zingo, Cariboo, Guess Who, Connect 4, Don't Break the Ice, Pop-Up Pirate & Suspend.

Sensory Toys

Many children also enjoy engaging in sensory play. Often these activities involve exploring different textures, scents, movements, and sounds. Sensory toys stimulate a child's senses and allow them to develop skills around self-regulation.

My favorite sensory toys include water beads, kinetic sand, Discovery Putty, pop tubes, pin art & textured bean bags.

Fine/Gross Motor Toys

Fine motor play often involves small movements and helps children increase strength in the smaller muscles such as their fingers and wrists. Whereas gross motor play involves larger movements and increases strength in the arm, leg and core muscles.

My favorite fine motor toys include anything with tweezers, droppers, stickers, or other small pieces, and my favorite gross motor toys include ribbon dancers, bowling, trampolines, yoga balls, balance boards & stepping stones.

You can access all of the specific toys and brands mentioned above, via my Amazon Affiliate link.

https://www.amazon.com/shop/biasbehavioral

(Behavioral Interventions And Solutions, LLC is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program. As an Amazon Associate, I earn from qualifying purchases.)

Also, be sure to check out https://www.biasbehavioral.com. You can find a variety of visual supports that accompany your favorite games and toys available as a digital download in my store.

5 Tips for Writing Effective Social Stories

Something weird is going on in the universe because we have been inundated with request after request for guidance on one topic: social stories.  We use social stories as simple, personalized guides designed to prepare an individual for an impending change, life event, or new experience.  I've written countless social stories on topics ranging from moving, having surgery, starting school, impending trips, behavior, responsibility, and on and on...

Why bother?  So often, we assume that children and/or individuals with special needs do not understand nor care about things that are happening around them.  We take for granted that they'll just adapt and come along for the ride.  In my experience, this mentality can yield really negative consequences and cause great duress for the individual and his/her family.  Social stories are a great way to prepare for change or a new experience by explaining what to expect in simple terms.  This allows an individual to acclimate to the topic, thus, discouraging negative emotions/behaviors that frequently occur when someone is caught off guard.  

Think about it this way; the world moves at a pace that is often uncomfortably fast for an individual with special needs.  When we see negative behaviors (stubbornness, refusals, tantrums), it is the individual's way of communicating "Wait!  I don't understand.  I'm not comfortable!  I don't like it!"  If we know a change or life challenge is coming up, and we can offer a friendly story explaining what to expect and offering coping tools, and we allow the individual time to digest the information and adjust, he/she will be far more comfortable and the outcome will be better.  Makes sense?  Okay, let's get started!  

There are tons of different approaches to writing social stories and trying to make yourself a subject matter expert before even opening a Word document will overwhelm and scare you away from the idea altogether.  Keep it simple! 

1.  Reading Level - A social story may look different depending on the reader.  One individual may need one simple sentence per page where as another individual may be able to handle paragraphs of explanation.  A good way to customize your social story for your reader is to look at the individual's favorite books and model that format.  

2.  Personalization - Josie and Leanne both love looking at photos of themselves and people they know so I try to use personal photos whenever I can.  With cell phones, it's quick and easy to take photos.  No printer?  No problem.  Take your phone to Walgreens and the photo lab tech can help you get them printed.  Or use Shutterfly to create a customized book.  If photos aren't an option, you can use a Google image search, Boardmaker, or an image search within your word processing software.  I use Windows products (usually Publisher but Word and Powerpoint also work well) and there's a function under "Insert > Online Pictures" that allows you to search for a relevant photo.

3.  Do your research - When Leanne had her EGD with dilation, I was unfamiliar with the procedure and recovery so I talked to people I know who have experienced it.  I even called the gastroenterology office and explained that I was writing a social story for Leanne and I asked her to tell me about the procedure in simple, easy-to-understand steps.  Medical professionals should be happy to assist you with a project like this.  

If we're going somewhere unfamiliar and I'm preparing Josie with a social story, I will go online and find pictures of the hotel and various landmarks around the city.  If we're going to be visiting relatives that Josie hasn't seen in awhile, I will insert their photos along with their names.  More than once, I've texted people asking for a photo of themselves that I can use in a social story.  

4.  Acknowledge the challenge or fear... - When it comes to medical procedures, if the recovery will involve pain or a cast or restricted activities, I will include that information.  I've written social stories that involve saying goodbye to friends and loved ones and I acknowledge that we will miss them.  

5.  ...BUT Keep it positive - It's always important to offer reassurance.  When Josie was having a tonsillectomy, her social story acknowledged that her throat would hurt but that each day it would feel better and better.  It stressed the importance of taking her medication in order to minimize the pain. 

When we were moving, I acknowledged that we would miss our friends but that Josie's family would remain with her and that we would make new friends.  

* Behavior Bonus Tip:  When writing a social story designed to correct a behavior, it's best not to place the emphasis on the negative behavior but rather focus on the replacement behaviors that we want to see.  In other words, don't tell the child to stop doing (negative behavior).  Tell them what you want them to do instead.  

This came up recently when I received an email from Kelli, about her 10 year-old son, Colin, who has Down syndrome.  Kelli asked me to help her write a social story addressing behavior concerns including being too handsy (Colin especially loves touching hair but sometimes it bothers his classmates), hugging too frequently for too long, and general boundary acknowledgement.  These are very common issues with children with Down syndrome so I asked for Kelli's permission to share the story on the blog.  

I set out to create a positive, instructional narrative that didn't make Colin feel like we were shaming or criticizing him, but rather we were outlining what Colin's goals were (friendship, being invited to participate in sports and games, enhanced communication, and proud teachers and parents) and we were offering him the tools he needed to achieve those goals.  Kelli went above and beyond by reaching out to Colin's friends and teachers and asking them to stage photos to appear in the social story illustrating the ideas presented.  They were happy to do this to help Colin.  

Download "I Can Be A Good Friend" here.

One last social story hack: Google it!  There are tons of social stories available online and on the website www.teacherspayteachers.com.  Many are completely free.  While I generally prefer to write my own social story with my own photos, reading some online examples can give me inspiration for what to include in the narrative.  Here's a great place to start: https://www.abaresources.com/social-stories/.

A Grief Epiphany

I realized something about grief today.  It's the most clear and meaningful realization I've had since we lost Mama Hop.  Coincidentally (or not), Merryn had texted me "I miss you" in this moment of clarity as I added another crumpled tissue to my pile.  I immediately shared my realization with Merryn because she "gets me" on some inexplicable level.  She also carries a lot of Mama Hop in her.  Those two were deeply connected.

I fielded a tough phone call this morning about the loss of a friend and neighbor that Travis and I cherished named Elaine.  Upon hanging up the call, I felt compelled to write a sympathy note to her family.  Before I began, I bowed my head, closed my eyes, and prayed.  I wanted to channel Elaine; to call to mind her memory and to share some special things about her and how she touched our lives.

The process of writing that sympathy card was very cathartic in that I couldn't help but call to mind my own mother's passing.  I felt her presence very close to me as I was writing.  Words flowed out effortlessly and even though I was writing to Elaine's daughters, I had an epiphany about my own grief process:

When we extract the very best qualities in someone that we've lost and we try to exemplify those qualities in our daily lives, we are honoring their memory and strengthening their legacy in the best possible way.  

Strength is found in moments when I know I'm making Mama Hop proud.  When I excavate patience in moments of motherhood where I'm on the brink of snapping, I feel Mama Hop's pride.  When I put my own agenda aside to do something thoughtful for someone else, I feel Mama Hop's pride.  And when I laugh off something that might otherwise get me into a neurotic frenzy, I can hear Mama Hop bellow "You go girl!" 

We are all humans; we have strengths and weaknesses.  Mama Hop and I overlapped in many ways and we were far apart in other ways.  It's cathartic to attempt to close that gap by summoning qualities that she possessed - patience, selflessness, resilience, and serenity - and push myself to honor her legacy by demonstrating those qualities in my life.  

To embrace the power and the responsibility of sharing the best parts of Mama Hop with the next generation offers both purpose and healing.  

Tips for Preventing Alzheimer's in Individuals with Down Syndrome

Did you know that by their 60's, 50% of adults with Down syndrome will develop Alzheimer's disease (source)?  Dr. Brian Skotko is a medical geneticist at Massachusetts General Hospital who is leading a clinical trial for a vaccination that would prevent the development of Alzheimer's in the Down syndrome population.  According to Dr. Skotko, "Right now we believe that people with Down syndrome might have the key to unlock the mysteries of Alzheimer's for all of us.  The pathology of their brains resemble Alzheimer's at an earlier age and can be studied."  (source)

In July, Dr. Skotko issued a "Down Syndrome Brain Train Summer Challenge."  It was an email series that included some research-based recommendations for boosting brain health in individuals with Down syndrome.

1. Socialization - Research shows that individuals with strong social connections have a lower risk for developing Alzheimers disease.  Dr. Skotko challenged families to have a 5 minute long conversation with their loved one with Down syndrome every day, featuring open-ended questions.

2.  Exercise - Research shows that exercise can enhance neuroplasticity and delay Alzheimer's disease.  The American Heart Association recommends a minimum of 150 minutes of physical activity per week.

3.  Play Memory Games - Research shows improvement that lasted for 10 years in neurotypical adults who participated in memory training.  The Dollar Tree has memory match cards for - you guessed it - $1.  We made our own cards featuring photos of family members.  

4.  Reduce Sugar Intake - Research shows that dementia risk increased dramatically with sugar intake.  Children and adult females are advised to consume no more than 25 grams per day.  Adult males should keep their intake at no more than 38 grams per day.

5.  Improve Sleep Hygiene - Research linked Obstructive Sleep Apnea Syndrome with increased cognitive deficits in Down syndrome.  Dr. Skotko recommends learning the signs of sleep apnea, having a sleep study if symptomatic, and wearing the CPAP mask as prescribed.  Click here for some tips for making that happen.  

To learn more on how you can help prevent Alzheimer's disease from developing in your loved one with Down syndrome, check out Dr. Brian Skotko's on demand video series "Down Syndrome Brain Train".