Caregiver sleep is so important!

June 6, 2018

Caregiver sleep is a hot topic around our house so If I Need Help asked Ellie Porter from the Sleep Help Institute if they could share some important tips about sleep. Ellie asked Amy Highland one of their awesome sleep experts to write a guest blog for us. Here it is. Get ready to get a good night sleep tonight! 

If I Need Help makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.

How to Get Better Caregiver Sleep Despite the Stress

While many parents and caregivers find joy in their role, at times it can be a challenge, especially if you’re not getting a full seven to eight hours of sleep. Caregiver Sleep plays an important role in your mental and emotional health, yet it can be elusive with the stress of caring for someone with special needs. You can help yourself get more rest by developing good sleep hygiene and healthy stress management skills.

Develop Good Sleep Hygiene

Sleep hygiene includes all the habits and behaviors in your life that contribute to the quality of your sleep. Healthy sleep starts in a bedroom devoted to creating a supportive sleep atmosphere. At night, that means keeping the room dark, quiet, and cool with the temperature between 60 to 68 degrees. Your mattress should support your preferred sleep position – stomach, back, side – so your sleep isn’t disrupted by aches and/or pains. Check mattress reviews to see if you’re sleeping on the best one for your needs.Your behavior during the day and close to bedtime greatly affects your ability to fall and stay asleep. A few sleep support habits that can improve the quality of your sleep include:

  • Keeping a Regular Bedtime: Your body relies on regular 24-hour biological and physiological cycles called circadian rhythms to time your sleep-wake cycle. A consistent sleep schedule helps your body acclimate itself to your natural rhythms and correctly time the release of sleep hormones.
  • A Relaxing Bedtime Routine: Like a regular bedtime, a bedtime routine helps signal your body that it’s time to fall asleep. Any activity that leaves you feeling calm and relaxed makes a good addition to your routine. Try to start the routine at the same time and in the same order each night.
  • Turning Off Screens Early: The bright light from televisions, smartphones, and other electronic devices suppresses the release of melatonin. Try to shut off your screens at least two to three hours before bed to prevent a delay in the onset of sleep.

Incorporate Stress Management Methods

For most people, stress cannot be avoided, and that’s especially true for caregivers. However, there are strategies that can help alleviate, manage, and control your stress.

  • Meditation: In a study published in the Journal of Child and Family Studies, participants who practiced mindfulness meditation reported 33 percent less stress while noting an increase in their overall well-being. Two months after the conclusion of the study, participants still reported having less stress. Meditation teaches the mind to focus on present sensations rather than the anxiety-causing past or future. While 15 to 20 minutes of meditation is best, in as little as 5 minutes per day you can start to see some benefits.
  • Yoga: A study conducted at UCLA found that after eight weeks of a 12-minute daily yoga practice, participants showed “a reduced activity of those proteins linked directly to increased inflammation.” Stress causes inflammation, which means that a reduction in inflammation often results from a reduction in stress.
  • Writing It Out: A journal next to your bed gives you a chance to write down thoughts that may keep you awake. For some people, it may be as simple as having a place to list tasks that need to be remembered. Others benefit from writing down stressful events from the day followed by their emotional responses. Yet others, benefit from having somewhere to record thankfulness and gratitude.

Together, good caregiver sleep hygiene and stress management can help you get the rest you need and take better care of yourself. By taking care of yourself, you’re maintaining the health you need to care for those closest to you too.

Amy Highland is a sleep expert at SleepHelp.org. She loves taking naps during thunderstorms and cuddling up with a blanket, book, and cats.

Safety Tool for special needs kids and police.

June 2, 2018

If I Need Help asked our friend Emily Iland to share information about her incredible safety tool “Be Safe The Movie” . BE SAFE is excellent for helping teach your child, teen or adult to interact safely with the police. This is an excellent safety tool we believe in.
If I Need Help makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.

Be Safe The Movie!

The Safety Tool You Haven’t Thought of Yet


Many families who live with the risk of having a child (or adult) wander or bolt from home

Many families who live with the risk of having a child (or adult) wander or bolt from home already know some of the key safety strategies to address the situation:
• Keep doors and windows securely locked and/or alarmed.
• Print out a Google Earth map of your neighborhood identifying all nearby bodies of water.
• Enlist neighbors to keep an eye out for your child (or an adult in your care).
• Use identification systems like If I Need Help, or even tracking devices like AngelSense.
While all of these things can help, here is one more safety strategy to consider: Teach your child, teen or adult to interact safely with the police. Especially if your “wanderer” has autism or another developmental disability, they need to be explicitly taught how to interact safely with the police.

Police often become involved in a search for a vulnerable person with a disability

Why? Because the police often become involved in a search for a vulnerable person with a disability, considered a “critical missing person.” If the police are unfamiliar strangers, the person being looked for might panic, fight, run or hide from rescuers. Each of these understandable reactions can be dangerous for different reasons.

For example, a panicked person might run into the street to get away from an officer who is only trying to reunite him or her with their family. A person who is taught, “Don’t talk to strangers” might hide in the bushes every time a rescuer comes near, putting their health and safety at risk. These examples underscore the importance of teaching about the helping roles of the police and not to fear officers.

Individuals of all abilities also need to learn to cooperate with the police and follow instructions, for their own safety. Examples include learning to stop when told to do so (again, think of preventing someone from running into traffic). It is dangerous to assume that the person will be able to follow instructions from the police during an emergency with no preparation. It is far easier to cooperate with police when the person is familiar with their instructions and has had a chance to practice before needing the skill in real life.

The secret is using teaching tools that are well-matched to the way your loved one learns.

These kind of safety skills are challenging to teach, requiring patience, time and effort. The secret is using teaching tools that are well-matched to the way your loved one learns. Joey Travolta of Inclusion Films helped me create BE SAFE the Movie to teach seven essential safety skills for interacting with police. While we designed it to teach those with autism and related disabilities, the 1-hour DVD can benefit anyone, disability or not. BE SAFE uses video modeling, a powerful teaching safety tool that can reach people of all ages, cognitive abilities and language levels. Our actors are individuals with autism and related disabilities, interacting with real police officers, which makes it really authentic!

BE SAFE plants positive visual images in people’s minds that they can draw upon during an encounter with the police, whether it is a casual meeting, needing help, or even a rescue. Remember, you don’t have to be able to speak to benefit from video modeling, and you don’t have to be able to speak to follow instructions from the police.

Because some learners need more information and practice and so few tools are available, I created the BE SAFE companion curriculum. It includes 7 lessons and 300 pages of teaching tools that help parents and teachers reach diverse learners. These BE SAFE materials are available at our website, www.BeSafeTheMovie.com .

In addition, BE SAFE can now be streamed into classrooms 

through a subscription from TeachTown (TeachTown.com). Isn’t that an important safety tool you want to see in your local school and in your child’s classroom? I know I would have wanted that opportunity for my own son with autism when he was in school!

Next time Erin and Bruce invite me to be a guest blogger I’ll talk about ways to create positive, personal relationships between your child and local police. For a preview, check out our new video and photo gallery at www.BeSafeTheMovie.com

You wouldn’t leave the front door unlocked and just hope for the best, would you? Don’t leave safety to chance when it comes to teaching your child to interact safely with the police! Whatever tools you choose, today’s a great day to get started teaching. When it comes to your child’s safety, ensuring that your child knows what to do in an encounter with officers is one more step to take for peace of mind.

Emily Iland

Emily Iland is an award-winning author, advocate, educator, film-maker and the mom of a young man with autism. She has more than 20 years of experience training the police about autism (www.ExperienceAutism.com). She discovered that while training the police is essential, it is not enough. Youth and adults with autism and related needs also need to learn what to do when they meet the police! Emily and her son Tom are bringing BE SAFE to Omaha, NE the week of June 10 and Phoenix, AZ in August. Learn more about Emily and her many projects at www.EmilyIland.com or contact her at emily@BeSafeTheMovie.com

Autism tips to know as you start your journey!

May 31, 2018

If I Need Help asked our friends who have adult children with special needs to share “3 things I wish I knew when my child was first diagnosed that I know now” Todays’ Autism tips for parents are from Shelly McLaughlin and Syrenthia Farris. They share the important things they wish they knew when her child was diagnosed.

If I Need Help makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.

Shelly and her son Hunter

Autism tips 3 things I Wish I Knew When my Child was Diagnosed that I Know Now!

When Hunter was first diagnosed with Autism I felt alone with a sense of grief. Fortunately, I was able to connect with local support groups and with Pathfinders for Autism (which would ultimately become my career). I wish someone would have reassured me that I was going to find incredibly supportive people through this journey. Without Hunter’s diagnosis, I would have missed opportunities to meet some amazing people.

It’s been at least eight years, but still fresh in my mind. The nightmare of being at the grocery store check-out and watching my four-year old son run out the automatic door and straight into the parking lot. But bolting from the scene didn’t only happen at grocery stores – it seemed to happen from every location. I wish someone would have told me that it would be possible he would one day outgrow his tendency to wander and elope (and fortunately he did).

ALL children have challenges.

But when your child with Autism has difficulties, we tend to blame everything on the diagnosis. I wish when Hunter was younger I could have better understood that some bad behaviors, while undesirable, are age appropriate and unrelated to his Autism.

Since embracing this journey with my son, I have developed and conducted Autism Trainings for various organizations including the Maryland State Police, Maryland Capitol Police, multiple County Police/Sheriff’s Departments, fire departments, EMS staff, corrections officers and other professional organizations. I am a certified police instructor by the Maryland Police and Corrections Training Commission, CIT certified through Montgomery County Police, and certified in Mental Health First Aid through Harford County Sheriff’s Office. I have also written several of our PFA Tips articles that have appeared in other publications, such as Chicago Special Parent Magazine and Autism Parenting Magazine.

Shelly McLaughlin
Director of Safety Programs
Pathfinders for Autism

Stephan and his Mom Syrenthia

3 Autism tips that I Wish I Knew When my Child was Diagnosed that I Know Now!

1.) The importance of Self-care. I wish I knew back then how important it was so I could have start early on.
2.) How raising autism has been such a blessing and positive impact on my life and the ones I serve/advocate for.
3.) Autism would place some wonderful individual in my path and there is support you just have to ask for it #Resource

When I was just 19, my 2 year old son Stephen was diagnosed with autism.

I had to become a strong advocate and navigated through an endless maze of doctors, clinics and treatment centers. After 20 years of advocating and serving as the primary caregiver for my son I reached a breaking point. I was emotionally exhausted and had to enlist the support of close friends and family to rejuvenate and jump start my life. The process was endless and needed deliberate amounts of self care. It was this experience that birthed Parents of Children with All Special Needs POCWASN.

Syrenthia Farris
Founder and CEO
http://www.pocwasn.org/

3 Things I wish I knew when my child was diagnosed

May 27, 2018

If I Need Help asked our friends who have adult children with special needs to share “3 things I wish I knew when my child was first diagnosed that I know now” Todays contribution is from Lisa Szilagyi. Lisa shares the important things she wishes she knew when her child was diagnosed.

If I Need Help makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.

Three Things I wish I knew when my child was diagnosed

Find a community of support:

Usually other parents: It can be very isolating having a child with a disability and often other people – family and friends, won’t understand what you are going through. Find or create a community of friends who you can talk to, who can relate to your situation.

Milestones:

It is so difficult when your child is missing milestones, and developing so slowly. Just remember that everyone continues to learn throughout their lives. Don’t listen to anyone who says “your child will never……….” It is possible that they might not, but always have high expectations. And early intervention is critical! Trust your instincts as a parent and as soon as you have concerns, try to find answers.

Behaviors:

This is the area that impacts families the most. Behavioral Intervention is so important, but find the right approach for your child. Everyone is different, what works for another child may not work for your child. You may have to try different approaches. Sudden changes in behavior can mean something – so pay attention and try to find out what is going on: Maybe it’s a physiological reason, maybe something is happening at school, or on the bus, and if your child isn’t verbal, they can only express it through a behavior. Trust your child’s behavior – if they seem to be afraid of something, try to find out what might be going on. Help other people – teachers, friends, family – see that behaviors may be a way of communicating.

Communication:

Communication is critical. If you child is non-verbal, try to find a communication system as early as possible. So many time behaviors occur because of frustration at not being able to communicate.

IEP’s: Be a strong advocate for your child.

Make everyone in the room say positive things they have observed or know about your child. Know that sometimes the Teachers are also nervous at IEP’s. Try to have a “Pre-IEP” meeting with your child’s teacher, to talk about goals and progress and your child in a more relaxed setting. Always ask about what your child’s strengths are, and use those strengths to build on skills. Also, remember that sometimes having too many goals in one IEP can make it challenging to work on all of the goals. Really think about what are the most important goals. Help your child’s teacher see that

Think about the future: Start now. It goes by fast,

Even though most of the time we are just trying to make it through the day, it is never too early to think about the future. As it turns out, the scariest transition of all is the transition out of school at age 22, and into adult life. Check out day programs, think about vocational opportunities, do a person centered plan to help create a plan for your child.

Lisa Szilagyi
Founder/Director of Programming, The Aurelia Foundation-Creative Steps
www.aureliafoundation.org
Co-Director, Hand in Hand, @ MJCS.org
Special Education Specialist, Level II Credential, Moderate/Severe

My Adopted Special Needs Sons

May 26, 2018

The Adoption Advantage!

If I Need Help has asked our friends who have adult children with special needs to share with us “3 things I wish I knew when my child was first diagnosed that I know now”  Todays contribution is from Dr. Lynette Louise AKA The Brain Broad. Lynette talks about her four adopted special needs sons! I Need Help makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.

The minute I met each of my four soon to be adopted special needs sons

I knew they were different. A unique bag of behaviors and perseverations. I loved them as is and hoped to teach them to be more. Each of them had extreme areas of discomfort and varying types of self harming habits. I loved them as is and hoped to help them become comfortable. If I had any illusions about them it was that others could love this turbulent group of barely verbal boys like I did. I married several times trying to find someone who was as committed and energized by helping as I was. Finally I stopped looking for men and started growing some.

As it turned out

My sons had the possibility of being fantastic (mostly) self earning tax payers. But teaching them how was my job. No school or program was going to do that for me.

I fell in love with them as they were rather than as I thought they were going to be.

  • For me the diagnosis of autism (and more) was not the devastating challenge it can be for parents because they were always challenged so I fell in love with them as they were rather than as I thought they were going to be.
  • For me the hard part was coming to understand that others didn’t fall in love in the same way.
  • That led us to push away from society and embrace teaching each other.
  • This worked out for us but it is a dangerous path for those who do not find the right solutions. The adoption advantage could just as easily have become the adoption disadvantage.

Hopefully with such high numbers of ASD individuals, by speaking out and sharing their journey we as a society can learn to enjoy the difference rather than try to expunge it.

Dr. Lynette Louise
aka The Brain Broad!

International mental health expert and performer
Be sure to sign up and stay in The Loop!
www.lynettelouise.com
www.brainbody.net

For Parents of Newly Diagnosed Children

May 25, 2018

If I Need Help has asked our friends who have adult children with special needs to share with us “3 things I wish I knew when my child was first diagnosed that I know now” Todays contribution is from Debra Muzikar with important recommendations for Parents of Newly Diagnosed Children. I Need Help makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.

Three Recommendations for Parents of Newly Diagnosed Children

By Debra Muzikar, mom to three Children, Kevin has autism, and co-founder of the Art of Autism nonprofit. www.artautism.com

Join a Support Group

Other parents, especially parents who have shared a similar journey, can give you emotional support and insights into navigating systems that are complex. I joined a therapeutic parent support group when Kevin was only 3 years old.  I learned so much from an older mom whose son was 8 years older than Kevin.

Practice Gratitude

Through your child a new world will open with many new people and situations you’d never think you would experience. This can be a gift and is certainly an incredible journey.  Many people who have come into my life because of Kevin (therapists, educators, other parents, and paraprofessionals) have become life-long friends. Kevin’s diagnosis has made me a much more compassionate and better person.

Protect Your Child’s Privacy

Many school districts and governmental agencies may ask you to sign HIPAA forms. Don’t do it! I made a critical mistake in signing a form that I should not have and the school district used the information against Kevin. Also, don’t post embarrassing things on Facebook and Social Media about your child without their permission.

Autism diagnosis: What I wish I knew

May 24, 2018

If I Need Help asked our friends who have adult children with special needs to share “3 things I wish I knew when my child was first diagnosed that I know now” Todays contribution is from Armando Sandoval of The Autism Society of Texas-El Paso. If I Need Help makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.

It’s been 23 & 24 years since my sons’ Autism diagnosis, my first thought is, “only 3 things I wish I knew?”

After much thought and consideration, I believe that there is really only 3 that are important. Who is your child? What are their limits? Don’t forget yourself. Ok, maybe 3 1⁄2. Socialization is important too.

Good news! Your child, no matter what, is still a child. They still have the wonder of curiosity and the desire for satisfaction. When my own parents would question my sons’ behavior, why does he do that? I could answer, because he’s a kid. Kids do goofy things. Kids will break stuff, because they are clumsy, curious, destructive… children. They all steal candy, they all pretend not to hear, they all like to eat dessert first. And when they are teenagers, they all get sullen, broody, (selectively) anti-social, and overall unbearable. It’s not fair, after all the autism stuff, you still have to deal with teenagers, but that’s good. This gives you a reason to love your kid and know that not all behavior problems require specialized intervention. Sometimes it requires good old-fashioned parenting that does not always work for parents of typical children either.

Good news! Your child is far more capable than you recognize.

A lesson I am constantly having to relearn and one that I see many parents’ are afraid of. Maybe it is our fear of our children failing. As a parent, we don’t give them the option of trying for something and giving them the opportunity to learn from not succeeding. When I am able to let go of my fears, “just to see what will happen,” they constantly surprise me. Not that they succeed or do a task correctly, but that they try and understand, and they try again! The worst phrase, “they won’t understand,” needs to be eradicated. It may be true, but so what? Like any child, character isn’t built by whether they cry for hours after they fail, but whether they try again. So, before anyone asks, yes we have an electric razor. Self-shaving is an important task that is loaded with fear. Why allow a chance for failure on such a painful scale, rather than minimize the risks and still allow your children a measure of success? Outside of anything that can physically harm them, we have no business deciding their limits.

Not so good news.

You have to take care of yourself. Everyone knows this and everyone agrees, however follow-up is very poor. You may not feel there is time for it, but your energy and stress levels suffer for it and you lose time. The end result, your kids suffer more.

Corollary: join a support group.

If there isn’t one available, start one. This may seem ridiculous, if you don’t have time to take care of yourself, how would you have time to commit to a group? The truth is, this ends up giving you time back. Not only do you talk to people who understand what you go through, they can offer suggestions based on their experiences. The first time you hear, “Me too!” it will rejuvenate your soul and your spirit.

Your child is not defined by an Autism diagnosis. Your child’s future is not limited by an Autism diagnosis. Your care should not be held hostage by an Autism diagnosis. You are not alone.

Armando Sandoval
The Autism Society of Texas-El Paso
https://www.facebook.com/AutismSocietyEP/

An Autism App that puts everyone on the same page

May 2, 2018

Chronaly is an Autism App that uses data to better lives

Recently during Autism Awareness Month, we learned of a mobile health company that plans to connect the autism community and use data to better the lives of parents, families, and children with autism. 

Much like the different colors and shapes that represent the diversity of the people and families living with autism, Chronaly’s team and background mimics these people and families. Chronaly’s culture and team embraces and practices inclusion and integration (much like National Autism Awareness Month, their app and logo are even blue) and is on a mission of establishing an autism app with a focus on inclusion and integration.

Here’s how Chronaly’s Autism App helps.

This year, Chronaly launched its first app focused on autism for iOS and Android. Their app was developed to include and integrate the care community—parents, therapists, teachers, doctors, etc.—under one roof to connect and come together to better care  for and support people with autism.

Based on research and interviews with parents, therapists, teachers, and others in the community, Chronaly’s team took on the challenge of creating features that really matter for improving treatment strategies—such as simple logging of daily activities and personal data for use anytime, anywhere on your phone. Through its analytics platform, Chronaly hopes to use data to improve every facet of autism-related education and treatment (from using goals to help teachers and therapists devise and evaluate IEPs, to providing helpful insights for parents to discover causes of meltdowns and health issues).

Families make a difference

Accordingly, Chronaly’s mission was inspired by Lily, one of its co-founders, and her observations growing up with her brother, Jeffrey, who has autism. From her perspective, “it was so weird to think how my brother’s psychiatrist would change his meds based on a 15 minute conversation once a week with my dad and brother.” This approach especially neglected tons of crucial data into Jeffrey’s well-being, like his behavior at school through what his teachers and caregivers saw.

Moreover, it neglected the experience and data of those like Jeffrey. As she jokes, “Jeffrey might be unpredictable sometimes, but what if we had data on 1000 Jeffreys? We could see helpful patterns and figure out triggers.” Through the insights generated by Chronaly’s data analytics, in the near future Chronaly hopes to empower all members of the care community with actionable insights for behavior, developmental, and health goals, based on anonymized data generated from across its user-base.

Going forward, Chronaly and its team are excited to include and integrate the voice and data from across the care community.

 

 

 

 

 

 

 

 

 

 

 

 

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To learn more about Chronaly, visit them at https://www.chronaly.com/

 

April is Autism Awareness Month.

April 21, 2018

By Sarah Sherwood

I am blessed to have a fantastic relationship with my sister.

 

As I’m sure we all know, April is Autism Awareness Month. 

For those of us whose lives have been touched by individuals with autism, Autism Awareness Month means a time for reflection and outreach, a time to open up a dialogue about what it means to be a friend or family member to someone who sees life through a different lens. I am blessed to have a fantastic relationship with my sister. Though we may bicker and tease each other like any other pair of siblings, our friendship is special because it has opened my eyes and given me a window into another world. Having my sister in my life has allowed me to be a much more patient, understanding, and tolerant person. I have tried my best to extend these qualities to those around me, so that they can exercise them in their own lives and their own relationships. Of course, having a sister with autism isn’t always easy. Because not everyone is used to Jessie’s mannerisms and personality, they often have the urge to talk down to her as if she’s a toddler or incapable of understanding them. This is extremely frustrating for me, because I have a constant urge to shield my sister from people who don’t take the time to get to know and understand her. I am always looking out for people who I flag as “bullies.” These are the people who give her sideways glances, chuckle under their breath when she walks by, or roll their eyes when she speaks. It happens all too often that these people are members of my extended family, my brothers’ teammates, or my parents’ friends. Sometimes I have to bite down on my tongue or completely leave the room in order to avoid starting an argument or getting myself into trouble with a scathing comment on their intolerant behavior. My sister is made up of much more than the things that make her different. Please, talk to her like a person. My sister is affectionate, compassionate, and considerate. She has many fascinating interests and hobbies. Most importantly, she has feelings, just like anyone else. She knows when she’s being talked down to, though she may not speak up to say so. My hope, moving forward, is that people will start to see my sister for all that she is, and treat her with the respect that she deserves. I’m done biting my tongue. It’s my job to protect my sister, even if that means standing up to those I look up to and respect. I view Autism Awareness Month as an opportunity to tell the people close to me that my sister is more than her disability.

What does Autism Awareness mean to you?

April 7, 2018

Autism awareness means different things to different people. Please enjoy this blog from diverse guest contributors who share their perspectives:

For me it means I am not alone


For me it means I am not alone

 

My sweet snuggly son Jay with emerging language transformed into an angry, screaming, aggressive boy who could no longer answer simple yes/no questions.  He no longer wanted my touch and I felt profoundly helpless. I also felt scared, sad and so much loss. When he got the Autism diagnosis it was upsetting but it also gave me something to work with.  I then started meeting other parents and therapists who shared their stories and resources so our intensive intervention began. They also listened and shared their experiences/advice. I felt supported by the awareness that others shared with me.  Now that we are well over a decade on this journey I like to listen to recently diagnosed families and share resources with them and tell them of the progress that Jay has made to inspire hope. Since he is 16 now we often talk with parents of adults with Autism to hear what they are experiencing and get advice on how to prepare for the future.

–  Erin Wilson, Autism Mom and cofounder of If I Need Help

Autism Awareness has a unique meaning to everyone so I asked some friends and treasure their responses…


Emily Iland: Emily Iland, M.A. is an award-winning author, researcher, advocate and leader in the autism field. She is the mother of a young man with ASD and brings personal experience and insight to her professional roles.

Over the past 20 years my view of autism awareness has evolved

Over the past 20 years my view of autism awareness has evolvedfrom a personal and private experience to a public and universal one. At first, autism awareness begins at home. Parents and family members need to go through a process of understanding and accepting autism, loving the person unconditionally, and supporting them to make their way in the world. The person with autism also needs to go through this process to know themselves, love themselves and become their best selves, as my son Tom taught me.

This process of “self-discovery” is a critical component of development if youth with autism are to find their niche and find their voice so they can live the life they choose. We as a society must provide them with the tools for success if we are to bring out the best in people with autism and help them come to life!

The public side of autism awareness is helping “others” understand and accept people with autism through information and education. This is how we can replace judgment and stares with empathy and patience. This is how to replace rejection and isolation with friendship and inclusion. This is how employers and others in the adult arena can come to value and appreciate people with autism and what they have to offer the world. And that is the universal part, because isn’t valuing and inclusion what everyone wants, for our loved ones and ourselves, disability or not?

You don’t have to do something big to make the world a better place for people on the spectrum. We all have the power to change society’s view of autism, every day. We can model the understanding, acceptance and valuing that our loved ones deserve. That is how to make every day Autism Awareness Day, and every month Autism Awareness Month. Our loved ones deserve nothing less.

Tom and Emily Iland are the co-authors of the award-winning new book, Come to Life! Your Guide to Self-Discovery (available in English and Spanish). This mother-son dynamic duo also trains the police about autism through the Experience Autism (c) program, and brings BE SAFE The Movie to communities across the country to help individuals with special needs learn to interact safely with the police. For more information, please visit emilyiland.com or contact Tom Iland at tom@thomasiland.com


Margalit Francus – Founder and editor AutisticGlobetrotting.com

Hi everyone, I’m Margalit Francus. Some may already know me from my website called 

AutisticGlobetrotting.com

AutisticGlobetrotting.com

When Erin asked me what does Autism Awareness mean to you? I wasn’t sure what to write about. After all, so much has been written already. From parental tips to sharing personal stories, the web is filled with posts.So I stopped and wondered what to share next? Bad experiences? Good experiences?And then it struck me. What I’ve wanted all these years and still do is to inspire families with autism. Travel has enriched our family life, and I’m sure it will enrich yours.I’d love to see more and more families let go of their fears of meltdowns and strangers’ comments and experience the wonders of our world. Whether it is the local zoo, top-notch museum or exploring the ancient Seven Wonders of the World.
However, exposing our kids to the world is only part of the equation. The other half is raising much-needed awareness by introducing the world to our special needs kids. After all, how do we want people to understand and accommodate autism if they don’t interact with them?
Some of you may feel uncomfortable and think I’m totally off base here. How can I take my kid on a flight or car trip if I can’t even take them to the local grocery store, you ask?
The short answer is you can do it – gradually. Don’t expect the transformation to happen overnight! But it will happen. So for this year’s autism awareness month here’s my call to action. Whether it is planning your summer vacation or your next day trip you start incorporating travel in your life. Not only will it help you bond with your kids and better your family dynamics but promote autism awareness in your local community. 


Cricket Barrientos Founder Sounds of Autism

I am a mom of a 15 year old Autistic Son 

I am a mom of a 15 year old Autistic Son

Autism Awareness to me is bringing EDUCATION and AWARENESS through our VOICE to our community so that our community can learn and understand what our Autistic children go through on a daily basis. I refer to these then educated community members as COMMUNITY RESPONDERS.  My hope is that our COMMUNITY RESPONDERS will then open their minds to helping support AUTISM through offering more patience when offering Job opportunities and eventually Living opportunities in turn allowing these kids to live a more typical life. 


Melissa Cole, Autism Society of East Tennessee

As the mother of a son with High Functioning Autism,

High Functioning Autism

to me, Autism Awareness is about educating the general public about this invisible disability.  It’s about teaching people not to stare and judge parents as bad parents if they see a kid or adult melting down in a store. It’s about teaching people to see the abilities in spite of the quirks. Making the effort to reveal the massive intelligence hidden behind the unique behaviors.  Training educators to mold the fixations these kids have into potential careers. Teaching teachers to be flexible and teach outside the box because these kids simply cannot fit into the standard student profile. Explaining the importance of picking your battles. Making people aware that parents of these kids are under enormous stress and don’t need the stares or parenting advice.  What they need is a nonjudgmental, listening ear. And maybe a babysitter from time to time so they can have some time to rest and recoup. And it is a time to explain that yes, as parents we see all the exceptions we are asking everyone to make so our child can maybe somewhat fit in and make progress, and we deeply appreciate it. As a parent, we will never give up on trying to help our children be as functional and happy as they can be.


Armando Sandoval, Autism Society of Texas- El Paso

Autism Awareness is a milestone in a long road leading to inclusion.

Autism Awareness is a milestone in a long road leading to inclusion

The purpose of awareness is not to point out the odd behaviors from those on the spectrum, but that there are shortcomings within society that any different behavior is considered odd. I mean, of course, the non-harmful behaviors. Awareness that autism does not limit (or extend) a person’s mental ability, but that there are gaps within the educational system so that all can reach their full potential. Awareness that autism affects everyone along the full lifespan of a person and does not end where childhood begins. Even with the spectrum society, there is a tendency to exclude those outside a certain age group. Social interaction, understanding, and extra consideration should be given to all, regardless of age. Awareness is not an end goal, neither is acceptance, but to be included as a productive, able, and equal member of society.   


Tiffany Lees

Autism in our home:

Autism in our home

Autism is a journey filled with many emotions happy, sad, proud and grateful are a few to name. We started this journey 8 years ago with my son. I’m a believer in early intervention home therapies, school based therapies and extracurricular activities and general public based sports and recreations.  Our household consists my son, daughter, husband and myself. Our family thrives on daily routines, schedules, repetitive communication and familiarities. We use multiple forms of communication within our house including, verbal, PECS, ASL and gestures. I have come to realize that living life within a bubble is much easier to regulate than fighting with the constant daily routines. Of course, the general public is not something that is controllable nor is the outdoors or public spaces. I get that and do the best job of preparing my son before any Outings. Outings require a plan, a backup plan and possibly a 3rd just incase plan. Autism is one of my son’s diagnosis. He also struggles with a moderate intellectual disability, mood disorder, ODD, ADHD and Intermittent Explosive Disorder. Dylan is 8 years old and I’m still learning new ways to help him each day. I encourage public awareness and education for the differently abled community. I personally love when questions are asked. Disability awareness can only bring positive change. My son has very fast changing moods. One minute he is enjoying a activity and the next minute, items are being thrown and we are in a complete WWE match to ensure his safety and everyone around hims safety. To see a meltdown in public can be very scary for some. I always make eye contact and smile because if nothing else a smile says I’m ok, and my son, is ok. Smiling is also a great way to open up communication with others. In the middle of a chaotic meltdown a smile is a kind, warm, open ended way to say hi and be supportive.

Autism Awareness is something I hope will be much more prominent in the near future. Awareness encourages support and education for all involved. At the end of the day ask yourself is awareness about changing my child to see and fit into the typical world? Or would awareness welcome my son into the typical world with all of his individualities?

I think awareness would eventually bring a world together that openly welcomes my son and others with Autism with all of their unique attributes without expecting anything in return.


Jodi Murphy, Geek Club Books Autism Nonprofit

The public is “aware” of autism

The public is “aware” of autism

but they don’t truly understand what it means to be someone on the autism spectrum. In the last few years, emerging autistic voices have been speaking out and asking to be included in the national conversation, saying “Nothing that happens about us, without us.” They’re advocating to reframe the nation’s and world’s message from “Awareness” to “Acceptance.” I stand with them in their quest and, in fact, created a nonprofit so autistic voices are activated and heard. #Activate4Autism is us stepping into pop culture to start conversations about autism and bring the topic to the forefront now, instead relegating it to one month a year. “Activate” is such a positive, action-oriented word. To me, it’s the next evolution—to take the public from awareness and acceptance to taking immediate action so those on the spectrum can have quality of life opportunities.


Nicole Aptekar, Advocacy For Autism

Autism awareness month gives us an opportunity

to educate those in our surrounding communities about what autism is and how we can best support these individuals through programs, services or just through simple acts of human kindness. The more we can teach others about autism, the more understanding we can hopefully bring about with the ultimate goal of acceptance and appreciation of differences in others.