I had the privilege last Friday to participate in an event called Ignite Michiana. For those of you not familiar with the Ignite concept, it is an evening of presenters who are given 5 minutes to give a presentation (20 Powerpoint slides that advance every 15 seconds) on a topic they are passionate about. I spoke about sensory issues, and how difficult it is for a lot of kiddos with autism to get haircuts. Because of that, I have started a home-based hair cutting service, which you can learn about in my talk:
The Lights Are Too Loud
Hi, I'm Colleen Spano, and I have a question for you...can you smell the river from across the street? How do you feel about the person bouncing their leg 5 rows back? Most of us don’t notice these things, but about 1 in every 50 of the residents of South Bend find those things I mentioned to be all consuming. That’s because they are on the autism spectrum.
Part of the diagnosis for being on the autism spectrum is that some, if not all, of your senses are not processed in your brain in a functional way.
That makes the world an even more difficult place to navigate than it is for a typical person. Background noise can sound louder than an airplane, the gentlest touch can feel like you are being pinched.
What does that 1 in 50 mean for all of you? It means that if you walk out your door in the morning, you will encounter someone on the spectrum every day. As business owners (and frankly, as fellow human beings) we need to consider our diverse population when planning our business space and approach.
For some businesses, however, it is very difficult to make many changes just due to the nature of the business. Like hair salons, for example. These are not quiet, calm, smell-free, touch-free environments!! So people with sensory processing issues often find getting a haircut to be tremendously over-stimulating and exhausting. All those nasty smells, big sounds, strange clothing and strange/new people…it can be way too much!
My solution? I created Shear Sunshine, a home-based sensory friendly hair cutting service. I come to the clients’ homes, where they are most comfortable, and hope to make the hair cutting process a fun experience, something they grow to look forward to.
That isn’t as simple as it sounds, believe it or not! I had to take the lessons I learned in my years of parenting (and yes, one of my children does have autism), my many years as an educator, a cosmetology degree, and the countless mistakes and successes I’ve had working with children with disabilities, blend all of that together to develop a pretty awesome plan of action for fabulous haircuts!
The plan is very individualized to each client but always starts with a short parent interview over the phone. During the interview I want to learn what their concerns are, what may have led them to use my services in the first place. I also try to learn some of the strategies and tricks they use at home that help their child feel calm and less stressed. That way I can tailor my session to include things the child responds to well while staying away from things that might upset them.
Next I email the family a Social Story to read with the child for the week or two before I come to visit. A Social Story is a tool used to explain to the child who I am, what things I will have with me, what I will be doing while I’m at their home, and most importantly what the expectations will be of them.
One of the most difficult things for people with ASD/SPD is any change in their routine. If you surprise them with anything “spur of the moment,” you will likely see some explosive behaviors!
*This* (photo slide of a child being restrained) is a child being held down by about 3 adults just to get a haircut. Its an all too frequent occurrence in the lives of kiddos with ASD/SPD. I go to great lengths to make sure it will NEVER happen during one of my haircuts. I strongly believe that having the Social Story to familiarize them with me is key in making the whole experience a positive one. And by coming to their space that begins our relationship on such a promising note.
Once I arrive at the house we take time to get to know each other (they share toys, I share toys, they get to look at my tools, that sort of thing…). After a few minutes we set up the work space and talk about everything that is going to happen while I am there…kind of review the Social Story.
And then we get to hair cutting! It is very important to me to create an air of mutual respect between children and myself, so I try really hard to hear what the children are saying and to oblige as often as possible. If they don’t want to wear the cape, that's ok. If they need to sit on mommy’s lap, we will do that! If they ask me to put away the clippers, I will. That can mean that a haircut takes 2 hours, or even 2 visits. Whatever we need to do to make one less thing in their lives stressful, that’s my goal. Because I believe every child deserves the chance to shine.
Lately I’ve been talking a lot about the benefits of Social Stories. That fact was made abundantly clear to me this past week as I traveled to Florida with my daughter, who is on the autism spectrum. Even though she is 18 years old and pretty high functioning it took some prep work to make this trip run smoothly. In fact, the preparation all started about 10 years ago when she took her first flight. For that experience we created a story, in book form, so she would know what to expect as far as noises and crowds (which are a couple of her triggers), as well as how I would expect her to behave. We read that story for the 2 weeks prior to our trip, and I can honestly say that we had really good results. She stayed calm and was even excited about the adventure. For each subsequent trip I would start talking to her about the travels a month or two ahead of time, each time reminding her what it is like to be in super-crowded places like airports or train stations. If she seemed at all anxious we would pull out the original social story that we wrote and review, which would often help answer any new concerns she had. By the time she reached her mid-teens we were able to ditch the story in book form, but we still verbally review travel expectations at least a week before we leave for an overnight event. Giving her that week to process what we will be doing gives her a chance to discuss her anxiety, find answers to any questions she may have about the destination, and make decisions about what she will need to bring with to make the trip as stress free as possible for herself. It also gives us a chance to decide ahead of time what our plan of action will be when either of us is feeling overwhelmed or over-stimulated. Let me tell you, that last part has been the pivotal ingredient to successful vacationing for our family. And it started in our original social story. She was given clear choices, written out, so she would know it is ok to say she needs a break.
The social story format has been a real lifesaver for us and countless other families. If you want to learn more about Carol Gray and her outline for writing a story I highly recommend that you visit her new website at www.carolgraysocialstories.com (it might still be under construction so keep checking back!).
I left you last time with a question...how are Social Stories being used? I'm sure you are hanging on the edge of your seat with anticipation waiting for the answer, so I will fill you in on what I've found.
Like I mentioned before, Social Stories originated in Michigan by a woman named Carol Gray. She developed these stories when working with students on the autism spectrum to aid them in their day to day interactions. Since the release of Thinking in Pictures, the biography of Dr. Temple Grandin, many of us have come to know that people with autism are often visual learners. They need to see something to learn it best. Ms Gray took that concept and made books, with visual cues, to introduce skills to students in a meaningful way. The special education community has taken the concept of Social Stories and made them an integral part of the learning process. I have seen stories used to teach young children about feelings, safety, and routines. Teaching empathy in early childhood environments eliminates so many challenging behaviors, and there are dozens of stories available to reinforce this skill. Safety is another huge concern, as we hear so often about children with autism eloping. Teaching them where running is appropriate, how to stay within a certain area, who their safe people are saves so many lives each year.
For older children, Social Stories are great to help them understand subtleties of social situations. Some of the titles that caught my eye were "The Gym Locker Room" and "Urinal Etiquette." Also, as we age it becomes harder and harder to know when someone is a friend or not, so stories can lay the groundwork to navigating friendships.
Do adults use social stories? What I found in my research was that adults tend to graduate to a form of Social Stories called Comic Strip Conversations (also created by Carol Gray). These get more into the nitty-gritty of conversations, what is being said vs. what the other person might be feeling, reading body language, that sort of thing.
Looking at all of the different types of Social Stories I feel like the impetus was keeping folks safe. Whether it is through emotional control, choosing our actions and reactions, sticking to a safe routine, or knowing who is safe to spend time with, we are sharing information so that people with autism spectrum disorders can be a part of the world with as few limitations as possible.
Next steps...how to write a Social Story :)
As we head into the holiday season many families are excited about all of the parties, get-togethers, and travelling they will be doing. For families with autism, we know all too well that the holidays bring with them a whole slew of extra stressors. How we prepare our children and family for the holidays can really make or break the season. Many people have come to depend on social stories for all sorts of experiences, especially big events like holiday happenings. That got me curious as to how and where social stories began, so I thought I’d share what I found.
Carol Gray is a teacher in Michigan who, back in 1991, developed and trademarked the Social Story. A few minor tweaks have happened since Ms. Gray first started, resulting in the basic outline that millions follow to write their own versions of Social Stories. The specific guidelines can be purchased at www.carolgraysocialstories.com (this website is under construction, so you may have to wait a bit for access). The premise of the Social Story is to expand a person’s understanding of social expectations, so that they may make more informed decisions about their response to a given situation. The stories are not intended to change behavior, they are to share information only, but in sharing the information one’s behavior is often affected in a more socially acceptable way. A good portion of the story (at least half) should have examples of what the person already does well so that they can recognize their successes and build upon those. The wording needs to be positive, accurate, and concise. Many of us have a tendency to get too wordy, and then we lose our audience and defeat the purpose of the story altogether!
An interesting side note…the Stories were originally started as a tool to use when working with young students with Autism Spectrum Disorders and have since been implemented across multiple abilities and age groups.
So how are the stories used these days? That will be the topic for next time…
Colleen writes with the real-life experience of raising three children as a single mom, one of whom happens to have autism. With too much on her plate, humor is Colleen's survival technique, often to the horror of her children! Welcome to the Land of Sunshine!
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