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/.

Down Syndrome and Preparing for Puberty

I have a Type A personality.  I like information; the more, the better.  I like to be prepared.  Sometimes I overprepare.  I can be a little neurotic.  It's part of my charm.  

Our oldest child just turned eleven.  Guess what's around the corner: puberty.  I would be lying if I said that this notion doesn't give me anxiety.  What's a neurotic, Type A mother to do?  Well, I must take the bull by the horns and tackle this head on.  

And as I always have, I'm happy to share my experiences as both a sibling and a parent of individuals with Down syndrome (within reason) in an attempt to benefit the whole community.  Because, despite all of the pitfalls of the Internet, it does allow for a valuable exchange of information.  And this blog is here to offer real life experience that serves as a helpful addendum to any clinical information you can gather from various books and websites.

Step 1: Gather Information - Have no fear: I have a book!  It's a pretty cool and comprehensive book, too.  It's written specifically for individuals with intellectual disabilities in simple and direct language with lots of graphics and photos.  It's called "The Girls' Guide to Growing Up by Terri Couwenhoven.

They have one for boys, too.  You can find it HERE.  

Step 2: Write a Social Story

Last night in the bathtub, Lydia (also known as "Biddy") said to me in an urgent whisper-yell "Mom!  Look - Josie is becoming a woman!" while frantically gesturing to her chest.  You see, Biddy was excited, but she was trying to be discreet.  We knew this day would come.  And if my six year-old noticed it, it's about time we face it.  So today, I stopped into Old Navy and I purchased some cami training bras.

What I did next should come as no surprise: I drafted a social story.  It's what I do!   Here's where my lifetime of experience with special needs comes into play...I've learned, time and again, that the more taboo a subject, the more tempting it is to discuss to whoever will listen.  Take this classic story from Aunt Leanne (I have no idea what happened to the photos on this old blog post!).  I have so many stories involving Leanne embarrassing my mom and I delighted in these stories so much more before I assumed the role of the one who would field the embarrassment.

Every family has a different threshold for modesty and different ideas about propriety and that's okay.  For me, I want my children to feel comfortable coming to me with questions and concerns so I try to be receptive and nonchalant while gently steering our family's values into the discussion.  I remember when Merryn put me on the spot about the birds and the bees and I froze and changed the subject quickly!  You see, she was really young. But she's always been advanced and inquisitive beyond her years.  Mama Hop shamed me when I told her and insisted that the next time Merryn brought it up, that I tell her everything.  And I did! 

Josie is different.  Because of her intellectual delays, Josie needs a very simple explanation, and many, many repetitions to learn a concept.  But the other tricky part about Josie (and many individuals with special needs) is that she doesn't have the same social instincts nor inhibitions that her sisters do.  So if she learns about something that's taboo, she wants to say it as much as possible to get a BIG reaction out of people.  

Pop Quiz: What do we do with attention seeking behaviors?

You named it: We ignore.  I tell Josie where (in the bathroom) and with whom (parents or a trusted adult) she can discuss certain things and when she brings it up outside of those parameters, I remind her once, and ignore the rest.  Without a reaction, the taboo words lose their luster.  

But it's important that we don't avoid discussing these inevitable things for fear of embarrassment.  We need to prepare our kids and we need to allow for enough time and repetition for them to learn how to successfully take care of their bodies.  While I find the aforementioned book incredibly helpful for guiding these conversations, I decided to break each topic down and address them with a dedicated social story for each one, starting with...drumroll please...bras.  

Ugh! Cringe, I know.  But we can do this!  And it's important that we do this.  Because teaching our kids to take care of their bodies, hygiene, and sexual urges is a critical part of health and wellness, peer acceptance, and social integration.

Click here for a free PDF of the whole social story

Here is a clip of Josie's first read-through:

Notice how she hung on to that "we don't talk about it."  As she self-talked herself to sleep, the bulk of the monologue was about "private" and "we don't talk about it."  I suspect there will be plenty of discussion about it whether I like it or not.  LOL!  Such is life with our chromosomally enhanced friends.  It's never boring!  

Disclaimer: While I have resolved to not only educate myself but share my findings via this forum, some topics are difficult to share within the confines of family privacy, internet safety, and keeping personal information personal.  That's why I offer the book recommendations along with advice for how you can draft your own social story.  I am not a professional; just a mom.  Please direct any specific inquiries about your child to your physician or a behavior analyst who can aid in teaching individuals with special needs how to take care of their bodies.

A Kindergarten Social Story

Change is difficult for all of us.  Even if it's something we're excited about, like starting a new job or moving to a new community, change is frequently accompanied by a little anxiety because we don't know what to expect.  For a child with special needs, it can be even tougher and often times that stress manifests as negative behavior.

I recently read that individuals with Down syndrome have a much easier time communicating requests and happy emotions.  However, it's not uncommon for individuals with Down syndrome to struggle to articulate discomfort or negative emotion.  This certainly applies to Josie.  She has no trouble demonstrating that she's excited about something.  She requests songs, snacks, and toys with ease.  However, when she gets upset, I feel like I'm trapped in an impossible guessing game and with each tear she sheds, the collective frustration increases as I blindly troubleshoot a solution to a problem that she can't always explain.

Sometimes instead of getting emotional, Josie will rev up her attitude and accost me with stubborn refusals every step of the way.  And while it's easy to chalk it up to her extra chromosome making her extra stubborn, we've been in behavioral therapy long enough to learn that behavior is communication.  Josie's negative behavior is often fueled by a desire to avoid something.  And if it's something NEW, I can almost guarantee that it will be met with refusals because Josie likes familiarity and she dislikes change.

People with Down syndrome often rely on structure and routines to make them comfortable in a world that often moves faster than their cognitive abilities allow them to easily process.  As discussed in the previous post, sticking to a schedule and preparing Josie visual aids to illustrate impending changes to the schedule help her to adapt.  When Josie is prepared and familiar with what is going to happen, oppositional behaviors are less likely to occur.

When we're preparing for major life events like moving, surgery, or starting school, I will make a social story so we can read it and look at pictures multiple times to help Josie become familiar and comfortable with the change before it occurs.  That's exactly what I did to prepare Josie for kindergarten.  I took my camera to school orientation night and I took pictures of her classroom and teacher so that she would have visuals to accompany her story.

Here are a couple of videos of Josie reading her kindergarten social story: Click Here and HERE.

One of the biggest benefits of a social story is the opportunity to provide a small sense of familiarity prior to embarking upon something new.  The idea is to remove a little bit of the anxiety and hopefully, encourage a more receptive attitude.  

The first few days of kindergarten were difficult for Josie.  At one point, her para told me that Josie had been asking to go home and "cuddle with mom."  It broke my heart.  But, as I could have predicted, with each passing day, Josie's disposition improves.  She does better when she knows what to expect.  She thrives on structure and routine.  Fortunately, she has an awesome teacher and support team who provide just what she needs.  She's brought home worksheets where she practices writing her numbers every day.  By the third of fourth day, her aide told me she got out the pencil and got right down to business writing those numbers.  And in addition to her attitude improving with familiarity, so has her performance.  

The experience has reiterated for me that providing a little extra preparation and with a little more repetition/familiarity, our kids with special needs will have the tools they need to achieve their greatest potential.

Josie's Social Story

As previously mentioned, Travis has a job that has allowed us the opportunity to live all over the country.  We always saw it as a fun adventure - finding a new dwelling, exploring a new city, and making new friends.  However, now that we're parents, moving is a bit more complicated.  It's not just about a new house to decorate or new restaurants to dine in; it's about finding new physicians, therapists, childcare, playgroups, and preschools. 

  

Then there's the concern over the adjustment and how moving will emotionally impact the kids.  This weighed heavily on my mind especially with Josie, as her cognition is more limited than Merryn's an I'm not sure exactly how much she understands. 

 

Her speech therapist recommended I draft a social story.  The goal of a Social Story™  is to share accurate social information in a patient and reassuring manner that is easily understood by it's audience.  Josie loves books so it seemed like a great approach!  I got out my laptop and typed up a simple booklet, printed the pages, stapled them together, and read it to the girls.  

 

 

So far, the adjustment has been going well.  I'm not sure how much the Social Story has to do with Josie's comfort level, but it can't hurt.  More on our big move coming soon!  

 

 

 

 

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.  

Josie's Tonsillectomy - A Social Story

While there is still a series of National Down Syndrome Convention posts planned, we interrupt that topic to address an important event that Josie will face this week: a tonsillectomy and adenoidectomy.  While these surgeries are relatively common in children, especially in children with Down syndrome, it is still a tough experience for a child.  Josie's past feeding difficulties resulting from her g-tube use (click HERE and HERE to read more), make this particular operation even more complicated and intimidating.  A successful recovery is contingent upon her willingness to eat and drink. 

 

As I've done with major life events in the past, I drafted a brief social story to help Josie prepare for the upcoming surgery.

 

I used Microsoft Publisher and incorporated a mixture of photos of Josie as well as generic photos I found on Google images.

 

 

Prepare to be amazed by my graphic design skills.  I know I will receive job offers right and left after the world gets a taste of my Microsoft Publisher "photoshopping": BOOM!

 

 

Wait for it, wait for it...BOOM, AGAIN!

Since food refusals are common in all children post-tonsillectomy, we are preparing ourselves for even more opposition from Josie, as eating is not her favorite pastime and she has a well-documented history of noncompliant mealtime behavior.

 

 

Therefore, this social story places great emphasis on the food consumption.  Josie's ENT said that in order for her to be discharged from the hospital, she has to eat and drink and that one of the most common problems that results from this surgery is dehydration.  We certainly don't want to have to be readmitted for IV fluids.

 

 

The next page employs the very valuable "First (non preferred activity), then (incentive)" statement that we learned in our years of behavioral therapy.  Josie

is very familiar with this idea so I spelled it out simply, with basic pictures because people with Down syndrome are very visual.  

 

We plan to take this booklet to the hospital with us to reiterate this idea after surgery.

While we anticipate some challenges initially after the surgery, we know that this type of surgery has the potential to bring a lot of health improvement to Josie.  She will have a sleep study in August to determine if she is still obstructing and experiencing lower oxygen saturations during sleep.

 

Here at CCE, we are big believers in the power of blogosphere prayers and we welcome and appreciate your prayers on Thursday. 

 

For more updates on Josie's progress, check our Instagram account:

https://instagram.com/catfishwithketchup