I have heard a few times recently about "the dash." Before knowing it had a name I was kind of obsessed with my dash, sometimes to my own detriment. Don't know what "the dash" is? Let me try to explain...
In our lifetime there are two very important dates; the day we are born and the day we die. Many times, when those dates are carved into a headstone and placed at your grave, there is a dash between them. That small dash encompasses your entire life. Everything you did or didn't do. Sometimes that dash represents only hours or a few days. Other times it can represent 20, 40, even 100 years. My obsession with my dash started when I got left behind at age 19. That is when my older brother, Jeff, died. I wondered why him? Why not me? What am I supposed to do that is so dang important that I got gifted with so many more years than him? It can be kind of overwhelming, soul-searching like that!
Today marks 29 years since Jeff finished his dash. In those years I have married, had babies, gotten degrees, divorced, made friends, lost friends, and started 3 businesses. I have also struggled nearly every day wondering what more I should be doing. What my big impact will be, how I'm going to change the world from my little desk in Indiana. It can be lonely being left behind. But it can be also be so powerful that even on those days when you just want to sleep or goof off or avoid everything instead you grab ahold of that extra time and make it mean something to someone, anyone, who may otherwise have struggled if they had not crossed your path. And to be perfectly honest some days I do just sleep or watch Netflix all day, as I know as well as anyone that you can't help others unless you help yourself first. Those days are usually hard though, and I tend to kick myself for them later. I'm getting better at being more kind to me, but there is plenty of room for improvement!!
In the meantime I will keep refining my goals, meeting others in the community who can benefit from the services I can offer and who can help me grow as well, and continue to make my "dash" matter. This is why I do what I do.
What will you do with your dash?
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…
After taking a much needed aestivation (yeah, I looked it up!) I have decided to re-commit to blogging on a regular schedule. I will do approximately 3 per week, mixing topics between current research/what’s in-the-news, practical and helpful tips for the home or classroom, and lastly I would like to explore the challenges of being a sibling to a person on the autism spectrum.
To begin I would like to take a stab at a recent article I read regarding folks with autism being less active than their neuro-typical peers. Since I never fully trust articles I find on the internet I went straight to the source, the original researh paper written by Tyler, MacDonald, and Menear (1), and here is the link if you want to read it too: http://dx.doi.org/10.1155/2014/312163.
So what these ladies were aiming to learn was if kiddos with autism are less physically active and less physically fit than typical children of the same age, and if so how is it related to their ASD diagnosis. Even though the sample size was small, they were able to conclude that children with an autism diagnosis do in fact have less strength and are less active, but they performed comparable to their typical peers in flexibility, aerobic fitness, and their BMI.
For parents and educators who work with children on the spectrum, this is not news. We find this to be true in many of the children we work with on a daily basis, but its kind of nice to have it clarified in writing, so we know we weren’t imagining things! I mean, sometimes it feels like there is nothing worse in my house than asking my teenage daughter with autism to go for a walk! She once told me a story about gym class, when they were trying to establish each students’ baseline strength levels, and when it was her turn she could barely pick up the (empty) bar for weight lifting. Her story made me laugh but it can be frustrating for both her and me when she cannot do simple household tasks due to her lack of strength. I think that is one of the directions this type of research needs to explore next, how the lower strength and activity levels impacts the quality of life for folks with autism. Will it be difficult for them to carry their groceries home, push a lawnmower, move a chair? And what can we do to recognize if struggles are based on physical limitations, using information from studies such as this? I realize the ladies who conducted the study were looking more at the health implications of being more sedentary, which often leads to obesity and many other health problems, and I hope more people take the initiative to dig deeper into this potential risk factor as well. However, I would also propose that researchers look at the more practical applications, such as how parents and educators can add a little movement and weight bearing activity to our daily routines. That would hopefully eliminate some of that performance gap the researchers mentioned, and decrease some of the struggles we watch these children experience each day.
1. Kiley Tyler, Megan MacDonald, and Kristi Menear, “Physical Activity and Physical Fitness of School-Aged Children and Youth with Autism Spectrum Disorders,” Autism Research and Treatment, vol. 2014, Article ID 312163, 6 pages, 2014. doi:10.1155/2014/312163
So I have this girl...
I had the opportunity this past weekend to participate in a local theater production called the Mamalogues. It was the brainchild of a friend of mine who feels that, as mothers, we all have valid stories to tell. While I know my story is not unique, and that many of you could probably just take out my daughter's name and insert the name of your child, here is the story I shared:
So I have this girl, she’s 18 years old, going to be a senior in high school in the fall, and has a heart of gold. When I mention her name I always hear, “Oh, I LOVE Izzy!” That wasn’t always the case.There actually was a time when teachers would see her name on their roster, roll their eyes and wonder how they were going to make it through the year. There was a time when no one, not even her extended family, would come to her birthday parties.
Izzy was born the last of 3 children, with almost 5 years between her and her closest sibling. She was a tough baby, cried a lot, was kind of small, not like my other 2 at all. I chalked it up to disposition, and the possibility that I may not be remembering their infancies with 100% accuracy. While she was a toddler Izzy really had me questioning my parenting skills. Everything I asked her to do was a battle. My patience was nearly nonexistent, partly because of her behavior and partly because of other people’s reaction to her.
Like when we tried a couple of different times to find a family church. Izzy’s flamboyant personality caused Sunday school teachers to politely ask us to try other alternatives for her if we wanted to continue to attend services. I tried taking her to story time at the library, to gymnastics classes, and to swimming. When none of those activities were consistently successful, I started to get nervous about what school was going to be like for her. Only I wasn’t prepared for how bad it would be. I wasn’t prepared for how crushing it would feel to have so many people reject my child.
I started to feel like a helicopter mom, so I decided to enroll Izzy in a daycare, give her other children to play with (and a chance to be away from my hovering!). Very shortly after she began Izzy was asked to leave. She had had a particularly noisy incident at naptime that ended with the staff locking her in a bathroom until she was quiet.The next place was a home childcare. The provider mentioned to me a couple of times that Izzy made the other kids uncomfortable because she always wore socks on her hands. I didn’t understand the problem, I thought it was adorable how she talked in third person with her little puppet hands! That sitter called me over the holidays and said she was going to stop doing childcare, effective immediately, so I needed to find a new place for Izzy before school started up again. I found out that never happened, she just didn’t know how to tell me she didn’t like my child. The next sitter was at least honest and told me she couldn’t handle Izzy, and didn’t want to watch her. And once it was finally time to start school Izzy’s behaviors did cause her to get suspended, multiple times.
I started to wonder if her home life was to blame, she had endured a lot of stress for a little girl (her daddy and grandma had cancer, and then her dad and I divorced). I assumed her behaviors were the result of her disposition and trauma, not anything else. When she was kicked out of first grade, and then second grade, I felt hopeless. By that point I was raising 3 kids alone, I had amped up my Prozac to 4X the original dose and still had this constant lump in my throat. I was feeling alone, and completely responsible for all of Izzy’s struggles. I mean, how did I make such a troubled person? What did I do wrong? She didn’t deserve this, she didn’t ask for this, and she was sooooo unhappy. She was running teachers out of her building (both her Kindergarten and First grade teachers retired after Izzy’s class!). For the longest time, her sister and brother were embarrassed to have friends over. The first time I talked to our doctor about my concerns and I was told Izzy was just a “spoiled brat.” Most other people shared that sentiment. But by now, deep down I knew this wasn’t true. So I kept digging. I researched her behaviors, I attended a gazillion lectures and workshops, I even went back to school to try to figure it out. When your child is suffering you will stop at nothing to alleviate their pain. I kept taking her to doctors and therapists, until someone said those magic letters- ADHD. Great, a starting point to get her some help!!
However, after just two years of therapy and medications Izzy‘s behaviors hadn’t really changed. She still didn’t like school, still didn’t have any friends, and now she was even was being targeted by bullies. Sometimes she would have meltdowns and cry so ferociously that she could not return to class. That’s when I would get the dreaded phone call, but before they could speak I already knew what they were going to say, “ You need to come get her, we can’t deal with this right now.”
By the time she was in 4th grade, Izzy’s therapist suggested I have her evaluated for autism. What? Was she serious?? At that moment I felt my whole world collapse. It literally felt like the ground dropped out from under me. My chest clenched, my ears shut off. I felt like a complete failure. I sat in that therapist’s office thinking “Why?” Because there is no turning back, no “growing out of” autism. Then, when that diagnosis was actually confirmed, I grieved, hard. I mean, I’m an educator, I work with kids with disabilities…how could I miss that about my own child? I’ll tell you how, it sneaks up on you. As a child grows we make little adjustments, one day at a time, and pretty soon all the strangeness is just your reality. It doesn’t seem so strange when its what you live every day. It can even be funny in retrospect. Like the time Izzy was watching a movie and her hair kept tickling her face, so she cut it. All. Or how, even to this day, she prefers to wear costumes (mostly ears and tails) over “regular” clothes.
At the end of 6th grade, when it was time for junior high, Izzy was panicking. She knew she would not thrive/survive that environment. We were lucky enough to find a school where she could start fresh, repeat 6th grade and stay through 8th. This school was pivotal in her opinion of school. And of herself. They welcomed her in, treated her like the valuable human being that she is. They made her proud of her unique view of the world. They helped her notice when she was making good choices, instead of waiting to punish the poor ones. Over time that allowed her to notice all the amazing things she does well. And, by reminding all of the students that every one of us has struggles, the level of empathy at that school was unlike any I had ever seen . We all need a bit of gentle kindness in our day, a safe place to learn and grow. I always hoped that my home would be that place for my family, but realistically I know it takes more than the good intentions of one momma to make a successful person. She needed to feel safe and secure throughout her whole day, especially while her confidence was rebuilt from ruins.
Since moving on to high school Izzy has still had some conflicts, but because of the strong foundation she was able to build during such an important growth period she believes that she is here to make a positive difference and has been able to resolve any issues fairly quickly. She just needed time, support, and people to patiently teach her appropriate behaviors when she is feeling overwhelmed. It felt good to have the backup, as a parent, from people who treat Izzy respectfully while guiding her to her fullest potential. Now she is a shining light in her school, not the student teachers groan about. Her perspective on the world has made my life so much more interesting and knowledge filled, so much more satisfying. People sometimes ask “how do you do it?” I didn’t realize I had a choice. This is my child, this is my life.
To Gluten Or Not To Gluten, That Is The Question
Such a hot topic! And since I am going to a workshop about eating gluten-free tonight I feel like this is as good a time as any to explore the subject in greater depth.
I come from a long line of folks with intestinal issues. Bloating. Gas. Indigestion. You name it, someone in my immediate family has experienced it. And I was no stranger to feeling uncomfortable after a meal, I just figured it was something I was predisposed to and therefore not able to do anything about. When I began to experience other symptoms, such as joint pain, acne breakouts, lethargy, depression, and looked into possible causes I learned that these could all be side effects of a gluten sensitivity. Interesting, and didn't require me to take more medicine, so I decided to give it a try.
What I learned is that going gluten-free is so much more complicated than I ever imagined! I kind of thought I could stop eating bread and the world would be wonderful. Wrong! Gluten is a protein found in grains including rye, barley and wheat. These grains, evidently, are in everything I love to eat or drink. And in a lot of places I wouldn't expect, like packaged soups and chocolate bars. It kind of made me crazy. But it also made me learn what I was actually putting in my mouth/body and make more things from scratch. I've been able to step back from packaged food a bit and eat more naturally, something I have been meaning to do for, well, forever. Some things I cannot make from scratch so I have had to try to find a suitable substitutes at the store. Like pasta, one of my favorite meals. Most gluten-free pastas do not compare to their gluten filled cousins. It took A LOT of experimenting with a lot of products, but I have found varieties that I am happy with (especially in casseroles). Bread is the other staple I miss. Gluten-free breads are notoriously crumbly (Gluten is like a glue when baking, so no gluten = crumbs). The magic ingredient when baking at home, for my recipes anyway, has been xantham gum. You only need a tiny little bit, it doesn't change the taste, but everything stays together like I'm used to!
Long story short, I do feel better after going gluten-free. And I do notice when I eat gluten, like when I had Chinese carryout this weekend not knowing that soy sauce has wheat. Oops! I blew up like a balloon, couldn't bend my fingers, and took 2 naps yesterday! Soooo not worth it.
On the flip side, I feel like I should mention that our whole gluten-free adventure started when my daughter, who has autism, was put on a full elimination diet (no dairy, gluten, eggs, or peanuts). She hated it. She swore up and down that she felt worse without gluten, and was so angry with me that I was forcing such atrocities on her. I thought she just missed pizza and was being a typical grumpy teenager! Turns out, she was right. Her doctor ran some allergy and genetic tests and we learned that she was in fact not gluten sensitive but was in a category of folks who don't metabolize folate appropriately. By not absorbing/using folate correctly she was more tired, moody, anxious, fearful, foggy headed...basically, she felt really bad. And where do most Americans get their folate? Yep, wheat products. We add folic acid to most of our flour, and without it she was miserable. Since re-introducing gluten to her world she has not had sleep problems, no anxiety attacks, no random crying, and her grades are soaring.
Our story is not unusual. It is very difficult to find the right fit for your family when looking at dietary interventions, since we are all unique and individual. But I definitely believe in taking the path of least invasiveness when treating many ailments, such as eliminating foods before loading up on medications. And like with any new treatment, always discuss big diet changes with your physician before implementing. It is not right for everyone, but when it is it is so worth it.
How many parents do you know who think they have done a perfect job raising their children? None, right?!! That is because we are all human, we all make mistakes. And for whatever reason, when you have a child with a disability you feel like people are judging you more harshly, watching your every move so to speak. That can lead us parents into a tailspin of doubt that can be really hard to find you way out of. I have gathered together some strategies today that have worked well for myself and other families I know when dealing with the ups and downs of parenting a child on the autism spectrum. These strategies will ideally keep you, and your family, out the tailspin altogether and maybe even enjoying your time with one another!
1. Make "Me" Time.
That goes for everyone in the family. We hear a lot of experts talk about taking care of yourself in order to be the best parent you can be, but people forget that children need their "me" time too. They need time and space to just relax, explore, let their minds wander without grown-ups directing their every move. For me it means waking up at least 30 minutes before anyone else so I can slowly prepare my mind for the day. For my daughter it means spending time in her room, as soon as she gets home from school, and simply listening to music and looking out the window. It makes for much kinder interactions, and it is noticeable when we have to break from our routines.
2. Plan Thoughtfulness.
In the hustle and bustle of parenting it is easy to overlook all the helpful things our friends and family do for us on a regular basis. But everyone likes to be appreciated, so make a habit (or put it on your schedule) to send words of thanks to some of your support network each week. Let your children see you expressing your thanks and appreciation too, so that it becomes more natural for them to recognize kindnesses. And don't forget to thank children for their efforts as well!
3. Be Screen-Free.
No, not all the time! I'm not that naive! But I have heard from a lot of families who enforce (at minimum) a nightly cut-off time for any screens, which includes phones, t.v., computers, handheld games...everything, for everyone (YES, parents too!). Research suggests that we allow our minds to slow down and adjust for sleeping by dimming the lights, turning off electronics, and listening to classical music at least 30 minutes before going to sleep. Perfect setting for a good bedtime read, don't you think?!
4. Declare Home a Safe Zone.
By no means am I implying that disagreements aren't allowed at home. However, I am suggesting that an arrangement be made that discussions happen, listening happens, and feedback happens...all with the intent of creating more capable, caring, successful people. A lot of conversations in homes (especially between siblings!) can be downright mean-spirited. I like the idea of home being a safe haven, where we can express our feelings and opinions without the fear of being attacked, and that really cannot happen unless everyone in the home is working from a place of growth rather than defensiveness. When you have a family member with a disability there is often more frustration than in a typical home. Just listening to one another, instead of trying to stir up controversy or play the blame game, is a wonderful way to remind our family that they are valuable and important.
I cannot tell you how many times a deep belly laugh made the difference between a good or bad day in my life! From the outside we might look incredibly goofy, but get those happy endorphins flowing and I don't care how silly I look!
Overall, these sound easy enough, right? They aren't though. They take some work. New routines can take anywhere from 21 days to a year to become habits, so be patient with yourself and your family when starting something new. I have seen plenty of homes where many of these ideas are a way of life, and it is well worth the effort in my opinion. Your family is worth it. And the more kindness you share, starting at home, the more kindness that will come your way. I don't know how or why it works that way, it just does. So, like Ellen says, be kind to one another.
Who do you believe?
A common thread in the autism world is that there is no common thread. So whom do you believe? How do you know what new trend to follow or try with your child? I’m going to give a few pointers on ways to sift through all the research, news articles, Facebook posts, celebrity endorsements and e-newsletters so that you can feel more comfortable with the treatment your child receives.
First: Who is sharing the information?
Check to find out the original source of the information. Is it a peer-reviewed research article? Is it from a reliable medical foundation (think American Academy of Pediatrics or Mayo Clinic)? Is it from a non-scientific source, such as People magazine? Don't get me wrong, I’m not knocking People magazine. In fact I appreciate how publications such as this introduce new ideas to the public and spark conversation. There has been many times when I’ve seen an article in a doctors’ office waiting room that has made me curious enough to learn more about a topic. However, it is important to know who is writing and sharing the information so that you may make an educated decision on whether to incorporate the material into your family’s life.
Second: Why are they sharing the information?
If the source of the information is funded by an outside agency, know what might be in it for them for the public to be aware of the information. For example, if a big drug company funds a research study on the effects of medical interventions for certain behaviors related to autism, and the study finds their product to greatly improve behaviors, how reliable is the study really? Unfortunately there is a lot of research done this way, so be careful to find out where the funds to research or publish came from before implementing a change.
Third: What kind of investment is involved?
I’m not just talking financial, although that is a huge component. But we already lead very busy lives, so we need to think about the time investment that a new therapy or treatment plan might involve. How will it impact your family as a whole? Will the benefits outweigh the negative impact? We often function in survival mode day-to-day, but consider the long-term effects by asking yourself questions such as will a little extra time now create a huge amount of benefit (for everyone) in the long run? And the financial investment may not be an option for you either, since treatment is typically long and costly. Even with insurance a lot of families cannot take advantage of all the interventions they would like because of the cost of copays, or the fact that insurance does not cover all treatment options. So is this time effective and cost effective for your family?
Fourth: What does you gut tell you?
If you read something and it just feels wrong, then it probably isn’t the right treatment for your family. I’m not suggesting turning away every new idea, not by any means. But, after you have done sufficient research on a topic yourself, if you feel like the information is too out of touch with your lifestyle you probably shouldn’t try it. Just try to keep an open mind and learn about the new research and treatments coming your way…there was a time, less than 75 years ago in fact, when science said autism was caused by bad mothering (remember hearing about Refrigerator Moms anyone!). Thankfully we now know that is not the case! Let’s be grateful that there are scientists out there brave enough to keep looking for answers so that our children may lead happier, more comfortable lives.
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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