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".  

Summer 2019 Update

Summer is so crazy.  It's a good crazy; you can't help but love it.  We're talking camps, softball, tee ball, tae kwon do, speech therapy, occupational therapy, tutoring, "intellectual development" (because Merryn doesn't like to call hers 'tutoring'), swimming lessons, ballet...

We celebrated two major birthdays (Lydia and Leanne) and two major holidays (Father's Day and Independence Day).

To celebrate turning 5, Biddy (Lydia) had a "Princess Party" hosted by Anna and Elsa.  We assumed she'd only want to invite the girls from her preschool class but she couldn't omit her beloved first crush, Edward, so it ended up being lots of kids and lots of fun.

A week later, we turned our attention to everyone's favorite aunt.  Leanne had been planning her Applebee's 42nd birthday extravaganza since January.  We all wore Leanne's favorite color as a tribute to her.

We were touched by how many friends and neighbors from back home sent Leanne cards and Starbucks gift cards.

Leanne's vociferous birthday planning starts six months in advance and anyone who encounters her during that period is going to hear all about it.  One year, the priest even announced it at mass, per Leanne's insistence.  She proudly waves her "Over the hill" flag and holds up four fingers on one hand and two on the other so everyone knows exactly how many years this earth has been blessed by her presence.  But hey, when you look this good, why not tell everyone?!

Speaking of adorable faces, we had to capture this monumental smile with its conspicuous vacancy.  Josie is showcasing her toothless summer grin daily and we can't get enough.

The five of us girls (Man, that seems like a lot when I see it in writing - poor Travis) enjoyed a fun-filled week at Vacation Bible School.

 After her enthusiastic performances last year, Leanne has solidified a permanent spot on the music crew.  It's the perfect job for her.

 I fell into my role as the official VBS photographer.  Every night, I was scouring the neighborhood for props that I could use the following day, assaulting my neighbors with strange texts inquiring if they had any bricks, plastic swords, googles, or pharaoh costumes I could borrow.

And Biddy Boo closed out her introduction to ballet and tap dancing with an epic performance.  Travis' parents even crossed time zones to attend her recital!  The costume and stage makeup made it worth all of those arduous Monday night dance classes, as far as Biddy was concerned.  She shined on stage!

And that, my friends, is just a brief photo update.  Daily adventures are documented on Instagram @CatfishWithKetchup.  Stay tuned because we want to share some more Down syndrome specific content.  Games, Flash Cards, and Social Stories - oh my!  

First Communion

Sunday, April 28th at 9:30am mass, Josie and Merryn both received their First Communion.  But this wasn't just an event that happened on that day.  A year (arguably a lifetime) of preparation went into this monumental occasion.  

I remember the day I got the folder revealing the date of the girls' First Communion.  A lump lodged in my throat.  It's primary source was grief.  Of all of the moments for Mama Hop to miss...this one was a punch in the gut.

The secondary source of my anxiety resulted from Josie's history with food refusals resulting from G-tube dependency (You can read more HERE and HERE).  The host doesn't exactly taste like an Olive Garden bread stick.  But we had time and a wealth of wonderful clergy, staff, and volunteers to help us figure it out.

Every Wednesday night, the girls, Leanne, and I load up and head to church for Faith Formation classes.  Well, the girls go to class, Leanne volunteers in the nursery, and I man my prestigious bathroom post as hall monitor.  That's right, Folks: they don't let just anyone sit on a chair outside the bathrooms and bark commands like "I think that's enough soap!"  "Pick up that paper towel and throw it in the trash!" and "Stop loitering and get back to class!"  This is how I serve the Lord.

During Faith Formation, Josie is in class with the other second graders, aided by a wonderful associate named Brenda.  Brenda is an OT by day and a loving mother of two lovely teenage girls: Allison and Nicole.  These three have volunteered countless hours in our special needs ministry to help Josie and other children with special needs grow in their faith.

Josie learned the protocol quickly: Bow, "AMEN!" (perhaps the most enthusiastic one the walls of this stoic Catholic church have ever heard), and the sign of the cross.  And with a little incentive like a mini Oreo, Josie even consumed the host.  Hooray!!!  Things were going well!

...Until one day Josie decided she was done eating that host.  In fact, it was during a dress rehearsal at our home that she gagged, coughed, and spit out the unconsecrated practice host!  

Just as Christ broke bread, gave it to his apostles and said, "Take this, all of you, and eat it: this is my body which will be given up for you," we celebrate communion because it nourishes God's life within us.  WE DON'T SPIT JESUS OUT!

In that moment, the grief, coupled with the g-tube PTSD, compounded by the pressure of the importance of this sacrament, left me paralyzed under the weight of crushing anxiety.  I spoke to our incredible special needs ministry coordinator and she encouraged me to have faith.  I tried.  But it was SO hard when they brought in a Board Certified Behavior Analyst who is pursuing her PhD, who pulled out all the stops, and Josie still REFUSED to consume the host.

But like I said, this was IMPORTANT.  And too many beautiful souls worked too hard to facilitate Josie's faith journey to let it be betrayed over the rejection of a dry Styrofoam-tasting cracker.  I asked if the priest could consecrate a Cheez It instead.  

That was a negative.

So, I brought the girls home and drew from the most powerful weapon in my arsenal (besides God/faith, of course): STUBBORN.  Yes, I know "stubborn" is an adjective but just go with it.  Josie may have a whole extra chromosome full of STUBBORN, but Leanne does, too.  And she just happened to leave a little extra in the womb for me to utilize on occasions like this.  I was born for this!

So we prayed.  We read Josie's First Communion social story.  We practiced.  A lot.  And I reflected back on those long days at the feeding clinic with Josie, excavated every technique stored in the dark corners of my memory, and I went to work.

 I got Josie to consume a piece of the host for me at the kitchen table using the same methods we employed to get her to learn to eat all food.  But in Applied Behavioral Analysis, there's a concept called "generalization" in which a skill learned in one setting can be applied in other settings.  Could we get Josie to generalize this skill?  

Josie successfully practiced with her sisters.  She practiced with Aunt Leanne.  She practiced with two different caretakers.  And then it was time to practice with the priest.

Sweet Father Ray set aside some time on Saturday morning just for Josie.  Jess, the incredible special needs ministry coordinator joined us with her adorable daughter.  This was the moment of truth:  would Josie consume the host in the church for the priest?

She did it!  And we celebrated with Oreo's.  

Sunday morning, we got out of bed and adorned Josie and Merryn in their traditional First Communion gowns and veils.  My dear friend, Erin, came over and fixed their hair.  

 They looked downright angelic.  We headed off to church and met with the other first communicants, preparing to celebrate this holy sacrament.  We took the customary aunt-gets-niece-in-a-headlock photo and then found our reserved seats in the pew.

 That morning was one of the most difficult mornings of my life, and it wasn't just because my Spanx were squeezing the life out of me.  Josie was in a foul mood.  She refused to stand up, sit down, and kneel, with the rest of the parishoners during mass.  She even defiantly kicked the kneeler, somehow injuring her shin, and dissolved into tears.  This wasn't looking good.  The cheerful, compliant Josie that had shown up to practice with the priest just the day before, was replaced by a combative little diva in a white veil perched precariously on her blond head, where Dad had awkwardly shoved in back in after the 20th time Josie had yanked it out.  I knelt in the pew with my hands clasped in white-knuckled prayer.

JESUS TAKE THE WHEEL!

Communion time arrived and Merryn went first.  She was beautiful.  The moment was perfect.  She beamed.

Then, it was Josie's turn.  The special needs ministry director knelt next to the priest who held out a small piece of the host and said "Body of Christ."

Josie paused.  The seconds felt like an eternity from where I stood behind her.  But that's not what Jess experienced from her vantage point.  She said Josie gazed at the priest, she gazed at the host, then she gazed up at Jesus on the cross.  Jess said an aura of light flanked Josie's head as the silent pause was pierced by a smile and an enthusiastic "AMEN!"  Josie put the host in her mouth and took off.

I took my communion, looked up, and saw Josie bolting for the exit, all the while crossing herself and faithfully saying "In the name of the father, son, and holy spirit..."  I chased her down in front of a sea of amused faces and led her back to our pew.  Then I cried.

The tears wouldn't stop.  I cried for my mom.  I cried for the weight of the pressure.  I cried for the gift of faith.  I cried in thanks to God.  

 I don't know if this is "normal" (I can't stand that word) or not, but one of my biggest emotional triggers in the wake of my mother's death has been the kindness of others.  The reminders that I may be motherless but I am surrounded by loving people whose kindness humbles me beyond words.  

People like my mom's friend, Gale, who sent me a birthday card and a Starbucks gift certificate, which landed me in a heap of sobs on the floor.  People like my mom's childhood friend, Karen, who sent Christmas gifts for the girls, knowing my mom wouldn't be there to do it. Church members like Brenda, Nicole, Allison, and Father Ray, who have walked this sacramental journey with us.  People like this phenomenal woman:

 For Jess, the special needs ministry position isn't just a job; it's a calling.  She has a passion for facilitating opportunities for children with special needs to experience Christ.  She adapts her approach to meet each child on his or her own faith journey.  I'll never forget the first time she called me an invited us to attend Faith Formation.  We had just moved and I was barely getting by on the last frayed nerve I had left.  I explained to her that I was utterly overwhelmed with these little ones and could not commit to one more thing.  She empathized in the most beautiful way and told me she would be there when we were ready.  She kept in touch and made us feel like a part of the church in a way that no one else ever has.  The church is a family and the magnitude of that is amplified beyond measure when you've lost very significant members of your own family.

After mass, neighbors, friends, and complete strangers congratulated us.  The benevolence was awe-inspiring.  God's people were unified in His Love.  Christ's light shown upon us.  Mama Hop definitely joined in the celebration.