Why I often don’t say thank you

My Autism Team logoWhen I give presentations to teachers, I always end with this line:

Teaching a student with Asperger’s [Autism Spectrum Disorder] may be one of the hardest things you’ll ever do, because you can go above and beyond the call of duty and the student with Asperger’s may not be able to even say as much as ‘Thank you.'”

AaronLikensIt’s not that people on the autism spectrum have “no emotions.” We do have emotions, but getting from that part where we experience those feelings to that part where we can express how we feel can be like trying to travel down the interstate with many brick walls lining the route. And for a teacher, I’m sure this can be deflating.

I know a high school teacher who had a student with Asperger’s. This person was really the first teacher that this student had ever clicked with. The student and this teacher communicated well together and the student made many strides forward. The student’s ability to learn was unparalleled in subsequent schooling years. But when graduation time came, and this student with Asperger’s was asked to acknowledge the teacher who influenced them the most and changed their life, the teacher chosen was shocked and unprepared for the announcement. “I can’t believe it’s me! I did nothing!” the teacher exclaimed.

What happened? On the surface this may seem like an act of defiance. But as it is with so many other things regarding Asperger’s, there’s much more than meets the eye.

First off, going back to my opening of this post, saying things such as “thank you” isn’t our strong suit. Actually, anything that would have us associate with emotions can be a no-go. Standing in front of a room to proclaim that a person changed their life, motivated them, or helped them? That’d be exposing a lot of one’s self.

So how would a person with Asperger’s solve this conundrum? Well, this particular student did it by choosing the teacher that did the least, because, logically, that eliminated the emotional component of the moment.

Graduation itself can be difficult for a person with Asperger’s, as it is a major life change. I’ve learned in my own life that as more and more stuff is on my mind, my ability to express emotions decreases greatly. I salute teachers that have made this big of a difference in any student’s life, but I know that when it comes to the autism spectrum, a response of gratitude may not be given.

So as this new school year begins, I want all you teachers to know that you really do go above and beyond the call of duty, and many of you are sure to truly be life changers to students on the autism spectrum. Our ability to say “thank you” in person or in front of a room may not be there, but I can assure you the emotions are there.

I can imagine that the teacher I talked about in this post was left to wonder why they weren’t picked as a student’s favorite teacher. It is equally, if not more, difficult to be the individual who wants to simply say, “thank you! Thank you for believing in me! Thank you for giving me a chance when no one else did!”

I feel bad that I was never able to fully thank my 2nd and 4th grade teachers for the seeds they planted that have allowed me to become who I am today. I probably seemed unappreciative, but underneath it all I was appreciative, and am. So I’m saying it now. Thank you, teachers. Thank you all.

Note from Easter Seals: Although Asperger’s is no longer an official diagnosis, and kids are diagnosed as having Autism Spectrum Disorder (ASD), Aaron was diagnosed before this diagnostic change. It’s what he is comfortable discussing, so we leave this term, and the blog, in his voice. Learn more about autism terms.

 

8 things to look for in sign language interpreters

sign-language-okHow on earth could a person who can’t see get a behind-the-scenes look at sign language? Keep reading this blog post for the answer!

When we published a post here last Monday about an accessible theater workshop I’d be participating in here in Chicago, I promised I’d get back to you with details. Before I do that, though, let me refresh your memory.

Arts organizations all over Chicago have been sponsoring special events, lectures and workshops this year to commemorate the 25th anniversary of the signing of the Americans with Disabilities Act. Victory Gardens Access Project opted to sponsor a workshop for “front of house” staff from theaters all over the city last Monday, August 17. I was asked to sit on a panel there with three other disability advocates to give tips on some of the special needs people with disabilities might have when we attend live performances. People who work front of house tend to do so because they enjoy working with people, they love live theater and they’d like more people to come out to support and enjoy performances.

Okay, now you’re caught up.

Now I have good news: from what I witnessed at the workshop last Monday night, front of house staff and the venues they work for are keen to include more people with disabilities in their audiences! I was pleasantly surprised by last week’s large turnout. Nearly 100 staff members were there, representing everything from storefront theaters to art museums to established art programs.

The workshop took up an entire evening and included many different sessions. My panel was the last event on the schedule, but my Seeing Eye dog Whitney and I arrived an hour or so before it started. When we walked into the Victory Gardens lobby I discovered two sign language interpreters giving a workshop about the things theaters should look for when hiring sign language interpreters for their productions.

The presenters used their voices as they signed, which made it possible for a woman like me to eavesdrop. I did, and learned that the best theater interpreters are ones who:

  • avoid signing every word — it’s more important to convey the overall story and allow the action on stage to tell the rest
  • prepare in advance — a presenter said she studies the written script and listens to recordings of the play for weeks ahead of her sign language performances and attends rehearsals and productions ahead of time to get a sense for the timing and determine which signs to use on the day of her sign language interpretation
  • agree to work in teams if the play has many people on stage at once who are talking over each other
  • use subtle movements, like widening their eyes or raising their eyebrows to add meaning to the words they’re spelling out
  • wear extra dark lipstick so audience members capable of reading their lips can see them better
  • wear dark clothes if they’re very light skinned so readers can see their hands
  • wear light-colored clothing if their skin is dark so readers can see their hands
  • take rings and bracelets off before they start signing

So many things I hadn’t ever thought of! Our panel afterwards went well, and it was a thrill to be on stage with playwright Mike Irvin (founder of Jerry’s Orphans), Rachel Arfa, J.D., (a staff attorney at Equip for Equality, a legal advocacy organization that advocates for the rights of people with disabilities) and Evan Hatfield (Director of Audience Experience at Chicago’s Steppenwolf Theatre).

Mike Irvin uses a wheelchair, Rachel Arfa uses bilateral cochlear implants, I use a Seeing Eye dog, and Evan Hatfield introduced himself by telling the audience he “doesn’t identify as having a disability.” We took off from there.

The evening ended with answers to questions Front of House staff members in the audience had about touch tours before shows, wheelchair-accessible stages, captioning technology, and person-first language like “Mike uses a wheelchair” rather than “wheelchair-bound Mike.” Audience members shared the challenges and successes of accessing arts programs, the night flew by, and I think (hope!) we made a small difference.

Guess I can find that out the next time I attend a performance in Chicago — and I hope that’s very soon.

 

Starting college when you have a disability

Erin Hawley headshot wearing glasses

Erin Hawley

We’re so excited to introduce Erin Hawley, who is going to share what it’s like to be a college student with a disability.

Hello readers! My name is Erin Hawley, and I’m a Digital Content Producer here at Easter Seals. I manage the microsite for Easter Seals Thrive, which promotes empowerment for young women with disabilities.

Disability advocacy is my passion, and that makes my job incredibly rewarding. I’m so passionate about disabilities that I even have my very own: Muscular Dystrophy! I am not exactly a young woman anymore, but I still definitely relate to Thrive’s young audience. I don’t find Muscular Dystrophy that exciting or interesting on its own, but having M.D. sure has placed me into some interesting predicaments – it’s forced me to face discrimination myself and deal with people who think it’s a miracle that I even wake up in the morning.

My post today is about what it was like to be a college student with a disability. There is so much I want to tell you — I’ve started and erased this blog dozens of times and finally decided there is no clear way to begin. I want to tell you about my years living on campus, and all the ableism I faced there. I want to tell you how my first week of college will forever be etched into my brain as the day the

Twin Towers fell only miles away, and how that event changed everything – for everyone. And I want to tell you about the friendships I built, the ones that fell apart, and the heart that was broken by cute boys next door.

I am the queen of organization, but my experiences during my college years are impossible to organize in one blog post. So much happened that was beyond my personal story – so many events and relationships that were steeped in institutionalized ableism and barriers. I’ll limit myself here to four examples:

  1. Professors who purposely made me feel uncomfortable in front of my classmates
  2. A professor who told me it was a “shame” I was trapped in “that body”
  3. The biology department director who refused to accept my need for assistance in labs and did not give me the extra time required to finish exams
  4. Inaccessible buses that shuttled students to Broadway shows, while I stayed in my dorm wishing I was in the city rather than staring at my computer screen

Looking back on this time, I get angry at all the things I let slide because I didn’t know my legal rights, or because years of internalized ableism took away any confidence I would have had to speak up for myself.

Ultimately, things worked out, but I wish that back when I was in college I’d known how to advocate for myself. I wish I’d had the knowledge I have now, and I wish back then I’d had the disabled community I have now, too.

We didn’t have Twitter yet when I was in college, but now I use it to share knowledge and support with a network of other individuals who have disabilities. So I am really excited about hosting a Twitter chat on disability and academia for a live chat this Wednesday, August 26th at 2pm EST.

Our awesome panelists for the live chat are four fantastic women who have either attended college or work in the field of academia and want to share their experiences with you: Whitney Bailey, Jessica Queener, Sara Fair and Andrea Dalzell.

Young adults with disabilities need to know they’re not alone and that they have rights and options when it comes to their college education. It is so important to know that help is there – we just have to ask for it. Anyone can join in to our Twitter chat and respond to (or ask your own!) questions.

For more information, please visit our Easter Seals Thrive website or Tweet us @ability2thrive using the hashtag #thrivecollege! I hope to see you there.

 

The potential in students with Asperger’s

AaronLikensSo I was on a vacation out West last month and was golfing at the Gordon Country Club, looking out to the west on the 7th tee on a blustery day, watching the high, groomed grass dancing in the wind. I looked to the north and the land just wasn’t as tended to and was just unkempt land. What a difference a little (or a lot) of work made.

That got me thinking.

I’ve talked so much about the potential a person on the autism spectrum can have. That potential isn’t just going to happen, though. It needs to work very much like the land out here. If it weren’t for the decades (probably more like the century’s!) worth of work on the land out here in Western Nebraska, there’s a good chance, well, a 100% chance, that the land would not be hospitable for much of anything. It’s taken irrigation, proper ranching, and a constant eye to make sure the land and livestock are right.

So why am I going on a talk about ranching and land? Potential. someone, at some point in time, saw potential out here. This community now has a sustainable agriculture economy. If the agriculture goes away, this town would likely go away, too.

How does this relate to anything? It all goes back to potential.

The school year is starting, and once more teachers are going to have students in their classrooms who have Asperger’s Syndrome. Some teachers have a difficult time handling these students, thinking that they are obstinate or defiant. Other teachers will let these students with Asperger’s just be themselves and not offer much guidance.

And then there are teachers who see the potential.

It’s fitting I started this blog post in the midst of an agriculture community, because for years I’ve been ending my presentations like this:

“we live in a society where everyone wants everything to be perfect right now. When it comes to autism we can’t look at it that way and rather we need to look at it like planting seeds; you’ve got to give it time to grow.”

That being the case, teachers have a great chance to plant the seeds. They can instill that potential that might be hidden underneath.

I ended up playing many more rounds of golf and driving by fields filled with cattle and grasslands perfect for food. Not being a farmer or rancher I didn’t always know what I was seeing – there were crops that I couldn’t name, and some fields that were seemingly empty. What was there? What was going on? From my vantage point it was empty, worthless land, but to the right farmer or rancher they may see the hidden potential in the land.

That’s the difference between knowing and not knowing. I can only hope that in this upcoming school year more and more teachers master the art of seeing potential. What may seem like an empty field may someday turn into the most beautiful of creations. It all starts with the planting of just one seed.

A version of this post first appeared on Aaron Likens’ personal blog, Life on the Other Side of the Wall.

 

When front-of-house staff aren’t trained to help people with disabilities

theater-curtains-down-morguestockI’ve written a post here before applauding the efforts theater companies are making to allow people with disabilities to access their live productions, and I’m pleased to be helping at a accessibility workshop tonight for “front of house” staff from Chicago Theaters.

Let me explain. “front of house (FOH) work encompasses all the things happening with the audience in the lobby and at the concession areas before, during, and immediately after a show — anything from selling tickets to handing out concessions to ushering. People who work front of house often do so because they enjoy working with people, like interacting with audience members directly, and appreciate one of the job’s big benefits: FOH staff often get to see the show for free.

But what happens when front of house staff members haven’t had many audience members with disabilities before?
It’s been my experience that untrained FOH staff mean well but can be sheepish about approaching my Seeing Eye dog Whitney and me or not very skilled at anticipating any special needs. In my case, I appreciate door people or security guards outside the front of the theater who call out to ask if I’m going to a play as I approach and then confirm I am indeed at the right place; staff inside letting me know where “will call” is to pick up my tickets; concession stand workers listing their offerings out loud; and ushers who offer to guide us to the best place for Whitney if she needs an outside break during intermission.

At tonight’s program, theater-goers who are hard of hearing, can’t see, use a wheelchair, have developmental disabilities or issues with memory loss will explain their unique needs and answer questions from front of house staff who will be there from theaters all over Chicago. Attendees will hear from audience members who go to touch tours before shows, use wheelchair accessible stages, read open captioning, take in ASL Interpreted performances, or listen to audio descriptions of what’s on stage. I’m looking forward to talking with front of house staff members tonight to learn more about them and their jobs. I also look forward to discussing the challenges and successes in accessing arts programs with them. I’ll be sure to share all I learn here with you on a future post. For now, its showtime!

If you’re looking for accessible recreation and entertainment activities, see what Easter Seals has to offer.

 

My 7-week trip to explore accessible travel…alone with 2 kids

Eliza-vacation-specialglobe

Eliza on vacation

Meg Harris is the founder of a website that researches and books accessible travel for families with disabilities called SpecialGlobe.com, and she’s on a seven-week cross-country journey with her daughter Eliza, who has Rett Syndrome, and her son Henry, a typically developing child. She’s capturing this journey on an exclusive vlog on easterseals.com/vacation. Here she is with a guest post about some recent stops out West.

by Meg Harris

Meg Harris and family

Henry, Meg and Eliza

I am Tan! Can’t believe it! I never get so tan! Must be because we’ve spent so much time outside and swimming on this trip.

I’ve loved all the swimming we’ve done these past weeks. We are truly having an incredible experience. I keep waiting for the kids to ask when we’ll be going home, but they are so happy out here exploring new things that they don’t mention it.

Today Henry told me how much he loves making so many new friends on the road. He is super-social, so wherever we go he has a new buddy. He loves that!

He is really loving Paleo camp, too — it’s a great program about paleontology for first and second graders. Jack Horner (the Paleontologist portrayed in Jurassic Park) is here at this museum. He is going to speak to the kids later this week, so that is totally cool.

This is a trip that I will remember always. Just like the kids, I, too, am not ready to go home! It is so much fun out here on the road!

Today we are moving to a new hotel, or, actually, a lodge. It’s very intimate and family-oriented, so it will be REALLY interesting to see how they handle Eliza and Henry and his boundless energy. What’s amazing about this trip is that most everywhere we have gone the hotels or attractions have commented on Henry, not Eliza. When we were checking out of the Inn in Cheyenne, the owner told me that he fully comped my room because of the mission SpecialGlobe is undertaking. He told me I have my hands full and said he was in awe. My Henry…I love him so much but he is truly a wild child!

Thanks, guys, for following us on this journey. Please share our stories with your families. If it even inspires one of you families out there who thinks you can’t travel to give it a try, then I will be happy!

Visit easterseals.com/vacation to follow our journey.

We’re also featuring every travel destination video on the Easter Seals YouTube channel here. Look for the Disability Travel playlist.

 

Veteran services must account for changing demographics

Kim Mitchell, a former Lieutenant Commander in the U.S. Navy

Kim Mitchell, a former Lieutenant Commander in the U.S. Navy

Today Easter Seals released a white paper about female veteran reintegration calling for federal and state policymakers to invest in community-based solutions to improve the transition to civilian life for female veterans.

I would never presume to fully understand the unique challenges that female veterans experience – and I do not want to put words in the mouths of my fellow veterans. But I can tell you that this is an important issue.

Studies and reports have extensively documented the challenges that female veterans face. There are more than 2 million female veterans in the U.S., and it is estimated that almost 200,000 women currently in the military will transition into civilian life over the next several years.

My business partner Kim Mitchell, a former Lieutenant Commander in the U.S. Navy for 17 years, states unequivocally that in a male-dominated field such as the U.S. military, women do everything they can not to be perceived as weak. She understands, more so than me, that women will often remain silent in group counseling sessions that mix male and female veterans. Yet I see these mixed-gender sessions taking place throughout the country. It’s not malicious on the part of the organizers; it’s simply that many civilians do not grasp this nuance of military culture.

Easter Seals Dixon Center logoVeteran reintegration works best when it is local, tailored individually and holistically to meet the unique needs of each veteran. Put another way, what works for a man doesn’t always work for a woman – and vice versa. Easter Seals examines best practices for female veterans in its Call to Action white paper and describes the models it successfully uses in its veteran programs across the country.

Today Kim and I are speaking at the National Council of State Legislatures (NCSL) summit in Seattle as part of a new partnership between Easter Seals and NCSL. We are urging state leaders to help promote veteran reintegration by reducing the fragmentation that exists among available veteran services and by expanding effective care coordination and supportive services models at the local level.

We need more community-driven programs that operate within this proven veteran reintegration model. There is only so much that the government can do. To fill the gaps, state leaders should authorize and fund state care coordination programs for all generations of veterans.

Part of this funding must be earmarked for community asset-mapping and service coordination efforts. This isn’t complex. What this means is that organizations like Easter Seals will make an assessment of all services in a community, connecting the dots between like-minded organizations to promote a synergistic, holistic approach.

Battlefields do not distinguish between men and women. I’ll never forget my brigade S2 (staff non-commissioned officer) in Iraq, Staff Sergeant Tami Reeder.  She supervised intelligence analysis and volunteered to lead mortuary affairs. This meant that SSG Reeder was responsible for recovering and processing bodies of those killed in action. I saw her going into burned-out buildings and vehicles, treating her job and her charges with the utmost dignity. She was as courageous as they come.

The civilian world is not the battlefield, though. Many civilians did not understand what SSG Reeder had gone through in Iraq and did not initially acknowledge that she faced the same war trauma as her male counterparts. Thankfully, that awareness is changing, and perhaps this will be a non-issue when she ultimately retires from active duty.

As society recognizes that each veteran is his/her own individual, we are seeing the acknowledgement that sometimes it makes sense to customize solutions for our veterans to improve their transition to civilian life. If it aids in the reintegration process, I’m all for it.

 

We’ve got Soul Food fever and here’s why!

Easter Seals has partnered with a very cool t-shirt company named Soul Food Mafia, and they are about a whole lot more than just t-shirts. Our guest blogger today is the founder of Soul food Mafia, Heidi Davis, and she answers some questions for us.

soulfoodmafia-3tshirtmodels-blogWhat’s Soul Food Mafia all about? It’s not about me, my team, or even a t-shirt really. We always say this is a universal calling. It’s our job to inspire a generation to do more and be more. Our karmic calling, so to speak. We just happen to do it through the creation of a really awesome T-shirt collection.

What inspired it? My 15 year-old daughter. I saw this generation of millennials that everyone says is too self-absorbed to care about philanthropy. I don’t believe that. I believe they want, no need, a movement. A reason bigger than themselves. We need to take them from selfie to selfless. Social media has taken over the world. That is where we have to go to inspire them. We inspire with badass t-shirts that are Instagram worthy.

Why is the number 8 special to you, and where can we spot it? Everywhere. On the website, our launch date, the number of philanthropic partners we have. Eight is the universal sign of karma. I am a firm believer in karma. (Laughing) Some days karma is all a girl has to hold on to. Hey, I might have to put that on a t-shirt.

What’s your connection to Easter Seals? Easter Seals and its efforts have touched my family in a multitude of ways. My Uncle Paul has MS and has been in a wheelchair since he was about 18 years old. He is fiercely independent and insists on doing just about everything himself. That would not be possible without organizations like Easter Seals. Your advocacy allows him to have the advantages that most of us don’t have to think about. (smiling) He’s a really cool dude.

What’s your advice for taking your passion and doing good with it? You first have to know what your passion platform is. Is it children with disabilities? Animal Protection? Human Rights? Pick one, pick two, heck, pick 8, but pick something. Even the smallest effort counts. One sandwich feeds a hungry person. So many people don’t get involved because they think what they have to offer isn’t enough. Every single thing you do for good counts. It counts.

How can the Easter Seals audience get involved? Visit our website. Soul Food Mafia has eight t-shirt designs that I created. They are really cool, and they are all manufactured in a sweatshop free, child labor free facilities. Pick your favorite. At the point of checkout click on Easter Seals as your philanthropic platform of choice. This ensures your donation goes directly back to Easter Seals. Join the movement.

Why is giving back important to you? My father is one of my favorite humans on the planet. He taught me that you should always give more than you take and that there are no limits on love. I try to teach those same lessons to my children. It’s all about Karma. They say what we put out into the world comes back to us three fold. I’m pretty sure it comes back eight.

Check out the Soul Food Mafia Lookbook video.

To purchase a Soul Food Mafia T-shirt and support Easter Seals, visit www.soulfoodmafia.com

 

Turn your passion into volunteer experiences

volunteer-crossroad-playgroundThere is no cookie cutter way to give back, and we love to see people use their passions and creativity for good, whether at Easter Seals or any nonprofit that touches you. Many people reach out to organizations like Easter Seals to see what they need, but you are empowered to give us, or any nonprofit organization, a call and offer your ideas for donation of your time or unique skills.

In fact, we once had someone with a certification in gardening offer to teach seniors in an adult daycare program how to garden. For years now, they’ve collaborated on seasonal projects and everyone — the volunteer and students alike — feels excited for, and stimulated by, each new project. As we gear up for a partnership with the company Outerwall to inspire volunteerism, we thought it would be a great time to offer a bit of inspiration with volunteerism ideas. Sara Croft is here to offer some of the unique ideas from Easter Seals Crossroads in Indiana. Take it away, Sara!

volunteer-cleanup-crossroads

Volunteer clean-up

Here at Easter Seals Crossroads, we’ve welcomed skills-based volunteers with open arms the past year. Here are a few examples of the sorts of people, skills and talents we’ve found useful:

Artsy people: Cayla is an art student at Heron High School in Indianapolis. She enjoys art and has brought that passion to our Adult Day program, which recently created an art therapy initiative. Cayla introduced the participants to a variety of painting mediums while they collaborated on a large canvas piece. She said “It was my first time volunteering and I was nervous but I had a great time and I will volunteer with the Adult Day Program again!”

 

Business people: Kate Stephens of That’s Good HR conducted mock interviews with consumers in our employment division to assist them with building interview skills. The local Indianapolis company specializes in recruitment and hiring and offered their expertise to our job coaches and consumers for a few hours during the weekday. Kate says “We loved our time at Easter Seals Crossroads! It is such a special place serving a wonderful cause!”

 

Social people: CampAbility, one of our summer day-camps, is great for anyone interested in Occupation, Physical, or Speech-Language therapy. All of the activities during camp have been developed by our therapists, and volunteers are responsible for assisting staff with activities that explore sensory/motor experiences, expand communication skills, and enhance social skills.

 

Outdoor people: Our Therapy and Wellness Garden is one of the highlights of our facility. The large fenced-in area is used by our Adult Day consumers year-round for growing vegetables and for outdoor activities. Keeping up on the maintenance for such a large outdoor area can be difficult. Volunteers keep the space beautiful by providing much needed mulching, weeding, trimming and general clean up. Local gardeners and landscaping companies have offered this assistance along with corporations who want a volunteer experience with their staff outside of the building.

Easter Seals Crossroads is thankful for the 700 volunteers that devoted their time to us during our last fiscal year along with the 9,182 volunteer hours that were served, and every Easter Seals is so grateful for any way you’d like to support us. Join us!

Your local Easter Seals affiliate is looking for volunteers with your skills and talents, too — any type of volunteering, whether it’s skills-based or a general opportunity, can give you the chance to improve on the skills and experiences you already have or to develop and practice new ones. One thing I hear from nearly every Easter Seals volunteer I talk to is that volunteering is as beneficial for them as it is for the affiliate they volunteer for.

 

A doctor’s opinion of developmental screenings for all children

Kevin P. Marks M.D., F.A.A.P. is a general pediatrician at PeaceHealth Medical Group in Eugene, Oregon, and he has some interesting points about why all children may benefit from social and emotional developmental screenings. Take it away, Kevin!

baby-feet-diapersMore than ever before, U.S. healthcare providers are promoting early literacy and language skills for children zero to five years of age. We preach “the 4 Ts”:

Talk, talk, talk.
Take turns taking.
Tune into what your child is doing and saying.
Turn off your TV and cell phone!

National campaigns like Too Small To Fail emphasize “Talking is Teaching: Talk, Read, Sing”—aspiring to close the word gap between low-income and affluent children.

My professional opinion is that public awareness campaigns promoting early language and literacy skills would be more effective if they were paired with a campaign about the need to screen children for developmental-behavioral problems. Although their recommendations are a bit complicated, the American Academy of Pediatrics (AAP) recommends universally screening young children for developmental delays, social-emotional/behavioral problems, autism and psychosocial risk conditions like maternal depression/anxiety. Parents need to know—screening is the new standard of care.

Interestingly, screening rates have approximately doubled over the past fifteen years. According to AAP surveys, 23% of pediatricians “self-reported always/almost always using 1 or more standardized screening tools” in 2002 and 48% used them in 2009. Nowadays, states like Oregon even have quality incentives that hold healthcare providers accountable for universally screening children.

So what is screening supposed to look like at a doctor’s office? If you’re the parent of a young child, does the process in this video about the Ages and Stages Questionnaire look vaguely familiar? Hopefully, your answer is yes. [Note that Easter Seals offers an ASQ screening online for free, and you can take your results to your pediatrician.]

Here’s why: 15-17% of U.S. children have a developmental disability and about 20% have a mental health disorder at any given time. Estimated prevalence rates are similar in 2- to 5-year-old children. By 16 years, 37-39% will have been diagnosed with a mental health disorder. Unfortunately, pediatrician impression alone (without screening) fails to timely identify and refer 60–80% of children with developmental delays.

Furthermore, children exposed to multiple adverse childhood experiences disproportionately require special education, drop out of school, get addicted to substances of abuse, and have suicidal ideation or attempts. They inordinately burden our judicial and penal systems with anti-social/criminal behavior and our healthcare system with mental illness, obesity and many other chronic ailments. Early intervention (EI) saves the brains of children with adverse childhood experiences and those with emerging disorders, like autism. For every dollar spent on high-quality early learning programs, there’s a 7-10 percent annual return rate in cost savings—and the younger the child served, the wiser the investment.

Beyond healthcare settings, the federal government wants screening to also occur in daycares, preschools, homeless shelters and at nurse home visits. “Birth to Five: Watch Me Thrive!” is a wide-scale, coordinated initiative to universally screen children at-risk for developmental-behavioral problems. Unfortunately, the average American parent knows little to nothing about their resources for families.

Every parent looks forward to seeing their child’s first smile, step, and words. Regular developmental-behavioral screenings help raise awareness of a child’s development, make it easier to celebrate milestones and identify red-flag concerns as early as possible. With early and periodic screening, parents can make sure that their children get the support they need to succeed in school and thrive alongside their peers.

“Do more talking and reading” is generally great advice but if parents have developmental, behavioral or learning concerns, be wary if a healthcare provider quips, “let’s just wait and see if he grows out of it” without first interpreting a screening tool. When clinicians notice “red-flags” or there is an atypical screening result, the new mantra is “let’s play it safe and give them a call”—“them” being an EI agency and/or other community resource.

Unfortunately, many referred children/families never receive high-quality services in a timely manner. Parents might have negative perceptions about referrals. They can seem like an externally imposed value system. At times, a healthcare provider’s recommendations can seem unhelpful or formulaic. The office staff might appear judgmental, intrusive, or overbearing. Many “lost-to-follow up” children/families are overwhelmed by life stressors like poverty, marital discord, domestic violence, mental illness, a language barrier, a disconnected phone service or recent move, etc.

At-risk/disadvantaged children are frequently overlooked if their state has strict EI eligibility criteria or lacks system-wide care coordination. Among states with narrow eligibility criteria, poor children are 18% less likely to receive EI services. Others live in a community where an early detection system struggles to address parental language or literacy barriers. Disparities exist in screening/referral support for Latino populations which negatively affects children’s involvement in EI. African American children with developmental delay(s) are 5 times less likely than were white children to receive EI services. All not good.

Alas, the new message for parents should be: “Talk, Read, Sing, Screen!” If your healthcare provider or high-quality screening tool indicates there’s an emerging problem, don’t wait. Get your child swiftly linked to an EI program and/or other beneficial program. Let’s expect 100% of healthcare providers to routinely use high-quality screening tools. Let’s tell policy makers to improve our care coordination systems to enhance the long-term success of our children.

Visit makethefirstfivecount.org to learn more about screening your child.