Military families with autistic children face uprooting, isolation, and continuous loss of services

#AuthenticAwareness includes knowing the additional challenges faced by military families living with severe autism

By Jennifer Penhale

A large number of families within the active duty military population have children with autism. Some of these families will move every few years and with that comes a whole host of challenges. We are an active duty Air Force family with three children on the autism spectrum (our twin teenage daughters being on the severe end). We move every few years, sometimes more than once a year, and at 16 years of active duty service, we have now moved seven times to six different states with one more military move left to go.

Every time an active duty military family with autism moves, that family is effectively starting at square one in finding new providers and launching a new IEP process. These families often face extensive wait lists and the majority of the duty locations are already saturated with similar families making it that much more difficult to secure needed services.

Add to that the “available” providers making the decision to exit the military insurance network leaving a very small pool of medical and therapy providers to go around. In addition to the stress of scrambling for services, these families find themselves with no built-in support, no friends and family. IEPs from previous states are often not recognized and honored, and the level of special education support and resources can be dramatically different. For children with severe autism, there are no real alternatives to the public school system. Charter and private schools, even private autism schools and homeschool co-ops, can refuse to enroll students with severe autism.

My daughters were denied acceptance to five private autism schools in Florida based on the fact that they needed 1:1 assistance and were an elopement risk. My youngest son with mild autism was accepted without question. For many of us, homeschooling has become our only option in order to ensure their safety and well being and a chance at academic success. I have had to homeschool for the last five years due to the unwillingness of four school districts in three different states to comply with federal law and provide a free and appropriate education to my daughters. 

We do not have the financial means to file due process, hire a good lawyer, and hope for the best. Some of us have been in a battle against some of the largest school districts in the United States. I personally battled against the 8th and 11th largest school districts in the nation; in Florida and Virginia. I knew full well that I could not successfully take on such a large entity without an arsenal of lawyers and funding. Our family, like most military families, would be moving before any resolution would possibly be reached. School districts know that and simply play “wait us out.”

The argument can be made that military life and autism don’t mix. But these families are also some of the most resilient you will encounter. They deploy and take on additional duties all the same. After living all over the country, we have met other families who are also dealing with challenges and hardships severe autism brings, compounded by the continuous uprooting. The isolation and loneliness can be overwhelming.

We military families have been advocating for more awareness, and better funding and accountability on the part of the Department of Defense. We fight for Medicaid portability among other things important not just those who have severe autism, but for all who have developmental and medical needs. 

My story is sadly the norm. We just wake up each morning and pray that we have the physical, emotional, and mental strength to just make it through the day… the evening… into the overnight hours, and to the sunrise of the next morning. But we must advocate to members of Congress for the needs of our children. Those who serve in the military should not feel that they must hang up their uniform because their children have severe autism. 

Jennifer Penhale, MPA, is the mother of three children with autism.

"I wouldn't wish my brain on anybody"

#AuthenticAwareness includes knowing the struggles inside the mind of an autism self-advocate

The author at one of his speaking engagements.

By Russell Lehmann 

As a motivational speaker, author and poet, I travel for work quite frequently. Oftentimes, to get from the airport to my hotel, I will take an Uber or Lyft. Inevitably, the drivers ask what I am in town for, and when I tell them what I do, they subsequently ask me what I speak about. 

I hesitantly say autism and mental health, not because I am embarrassed or ashamed, but because I know what the driver’s response will be: “Oh wow, I would have never guessed YOU have autism! You must be doing very well!” I give a half-smile on the outside, while frustration fills my inside.

Individuals with autism are at a significantly increased rate of having a mental health diagnosis. I have 8 invisible disabilities, and usually, aside from massive public meltdowns that have taken a toll on my well-being, only those closest to me see my struggles. 

The driver taking me to my hotel doesn’t see my meltdowns at home where I shake, rock back and forth, screaming at the top of my lungs while cussing and punching myself in the head. 

My followers online don’t realize the excruciating thoughts that consume my mind, such as suicidal ideations and disturbing intrusive thoughts stemming from my OCD. 

My neighbors aren’t aware that every day is a fight to get out of bed. Sometimes I don’t, and when I do I want to run away from being misunderstood, not fitting in with society and being extremely isolated and lonely. 

Very few know of my past hallucinations, because even though I take pride in being extremely transparent and authentic, there is still too much stigma for me to walk around telling people how terrified I was when I was sobbing on my floor while the devil was yelling at me. 

I can excel at the extraordinary, but I struggle with the simple. Do not for one minute think I have it “made” due to the nature of my career. I have not “outgrown” or “overcome” autism or my challenges. To be honest, I wouldn’t wish my mind on anyone unless they were readily prepared for it. 

Indeed, I have beaten the odds and continue to do so every day due to my tenacity and perseverance, but don’t let that paint a false narrative. I still struggle vehemently, I get severely depressed, I get discouraged with the lack of compassion and understanding and I cry almost every other day. 

This world is too harsh for me. However, my heart and soul drive me to speak up for others who are not heard, because I know how challenging and hurtful it is to go unnoticed. 

Always remember this line I wrote a few months ago, and that I continue to find to be more and more true with each passing day: “What you do not see is much more important than what you do see.”

Learn more about Russell Lehmann at www.TheAutisticPoet.com and on Instagram at @autism_advocate_

My Autistic Daughter Swallowed Ball Point Pens: A Story of Severe Pica

#AuthenticAwareness includes attention to this life-threatening condition, which is common in cases of severe autism

By Kelly Olson

My daughter Kayla is about the same age as Greta Thunberg, but the poised and articulate climate activist’s “autism” bears no resemblance to my daughter’s. 

In a split second, Kayla will swallow whole objects intact, like you might see someone do in the circus. A big rock, batteries, chunks of soap, nails, an Allen wrench, baby lizards or bugs, she’ll pick them up and eat them. She used to break glass on purpose so she could eat and swallow the shards. To this day most of our dishes we use daily are made of unbreakable plastic or melamine. 

From an X-ray finding batteries inside Kayla’s abdomen.

Pica, as this behavior is called, is a common feature in autism. It refers to the ingesting of non-edible objects like dirt, rocks, glass, paper clips, paper, plastic, and/or basically anything else you can imagine. Items may be relatively benign such as grass, leaves, paper, or more harmful such as rocks, household cleaners, etc.

For many, pica can be a horrifically serious compulsion, leading to choking, poisoning, or blockage or perforation along the gastrointestinal tract. Emergency Room visits, X-rays, CT scans, blood draws, frantic calls to Poison Control, and surgeries for repair or object removal are all part of life for families like mine. 

In one particularly tough year, My daughter had so many X-rays and CT scans done in search of swallowed foreign objects, I was surprised she didn’t glow in the dark and seriously worried about the long-term effects of her being exposed to so much radiation at a young age. In addition, I have learned so much from calling poison control, like exactly how many tubes of toothpaste, deodorant, etc. one can eat before it becomes truly dangerous. 

For years, I have lived in a state of intense hyper-vigilance while we’re out and at home. Except for sleeping — which is something she very often doesn’t do — there is no downtime, no respite from pica. Several times a night I am awoken by the door sensor alarm that lets me know she has left her bedroom. It only takes a moment for her to grab something and swallow it. At school she has a 1:1 aide who is always an arm-length away. But the vigilance continues to the other end, too. You don’t want to know how much time I have spent fishing items out of her poop to make sure they’ve passed.

To add an extra scary twist to Kayla’s pica behavior, Kayla has a compulsion to swallow large items whole. She will even pretend to chew her food just to swallow it in large chunks on purpose, as if she seeks some unmet sensory need. Even when eating appropriate food items we have to watch her very closely and make sure her food is cut up in small bite-size pieces and prompt her repeatedly to chew her food during each and every bite with each and every single meal. It is tedious, but necessary.

Unfortunately Kayla seeks out this sensation when engaging in pica. I have witnessed her pick up a large rock that you would think impossible for any human to swallow get tossed in her mouth and disappear as easily as an m&m in an instant. This behavior has always been an issue since she was a toddler. It’s as if she never moved from the toddler stage where they put everything in their mouths, and it just got worse and worse each year. 

Images from the endoscopic removal of the pens.

Kayla’s pica was at its worst when she was about eight and nine. Because Kayla likes drawing and I could not let her use crayons or markers (she eats crayons and marker tips) I thought I would get her some colorful gel ink pens. I found a pack of five at a dollar store. There were smaller pens, maybe about four or five inches each, but pens nonetheless. I sat on the chair adjacent to the sofa and placed some paper and the pens on the coffee table in front of her while I checked some emails on my laptop. I must have looked down at my computer for 20 seconds and by the time I looked back up, the pens, all five of them, were gone. 

I asked Kayla, “Where are the pens?” and she indicated to me that she had swallowed them. “There’s no way, that’s not possible,” I thought to myself as I frantically searched under the sofa and flipped over all the cushions. No pens. So I just calmly got her dressed and took her to the emergency room where an X-ray revealed the metallic tips of five ball point pens. We were then transported to Methodist Children's Hospital by ambulance where she had endoscopic surgery to remove them from her stomach. 

Fortunately the surgeon was able to retrieve the tips of the pens with the tool and did not actually have to cut into her abdomen. After the surgery the doctor showed me the image of the pens in her stomach, my jaw dropped. I guess I was still somewhat in disbelief. But seeing is believing. That's why I make a point to show new teachers, camp counselors and other care providers of hers, images of these pens. Because I think when I say “pica” people think maybe she chews on a piece of paper now and then or eats dirt or grass or leave — not things that require emergency room visits. I need them to wrap their heads around the danger my daughter faces each day. This is life-threatening behavior.

“Kayla is like Houdini, able to get her way into anything, so as you can imagine, everything is locked up at our house. We have locks and or alarms on doors, cabinets and the refrigerator.”

I sought help everywhere, but no one in Texas was willing or able treat her. So about six years ago I admitted her to the Neurobehavioral Unit at Kennedy Krieger in Baltimore for several months. As a single mom, I was desperate and exhausted and totally out of options. A combination of behavioral treatments and medications has helped reduce the pica, but I remain in a state of constant vigilance, and a weariness compounded by Kayla’s hyper-energetic inability to sleep. Kayla made excellent progress during and after her inpatient stay in Baltimore. Her pica behavior decreased dramatically. However we are not 100% out of the woods. It is an ongoing work in progress but I hope as she matures and we continue our best efforts to provide the appropriate behavioral support we can eventually eliminate this behavior.

Despite her progress, we still have to take precautions to keep her safe. Kayla is like Houdini, able to get her way into anything, so as you can imagine, everything is locked up at our house. We have locks and or alarms on doors, cabinets and the refrigerator. I’ve had alarms, home camera systems. In the bathroom I couldn’t  leave anything out, even toilet paper, shampoo, soap, or deodorant, because she would ingest them. 

The situation has since improved somewhat, I can now leave certain things out I know she has no taste for, but basically the bathroom is literally empty except for towels and toilet paper. I even have to cut out the magnets from the shower curtains liners as she will remove them and swallow them. She even figured out how to pick locks on my bedroom door in order to seek out all the aforementioned toiletries I have stored. 

You cannot sweep from your mind the thought that this is how my kid is going to die — she’ll choke or get poisoned. There is no replacement behavior, she seeks the sensation of a whole object going down her esophagus.

“While the world celebrates the Gretas of the world, it turns its eyes away from the Kaylas. But there is a generation of young people like my daughter who desperately need help and need the world to know their stories, too.”

After I remarried last June, we moved into our new house and the enormous added costs of living with severe autism once again hit me. To cite just one of many examples, we had to pay $1,000 to have an highly toxic oleander tree removed from the backyard for fear Kayla would ingest its potentially deadly flowers. Also, the renewed sense of missing ordinary, normal things, like wondering if I’d ever be able to buy a regular wine glass.

But mostly I know this autism behavior, like her eloping, could kill her. While the world celebrates the Gretas of the world, it turns its eyes away from the Kaylas. But there is a generation of young people like my daughter who desperately need help and need the world to know their stories, too. 

I will never give up on my daughter, and will try every tool I can to keep her from swallowing things that aren’t food, but I am also consumed by fear. I’m not going to be around forever, and no one else will be her helicopter mom. Our vulnerable, disabled autistic kids, they deserve the cover of Time magazine, too.

Kelly Olson is the pseudonym of an autism mom who lives in Texas. Kayla is a pseudonym for her daughter.

Awareness of Severe Autism Saved My Daughter

Crushed by her inability to keep her autistic daughter safe, a mother considers the true meaning of autism awareness.

By Adrienne Benjamin

I’m experiencing a new level of fear. For over a decade, my nonverbal autistic 23 year-old daughter Zoe has delighted in very long car rides. She listens to toddler tunes on her iPod or car CD as we drive around . 

But these drives can be fraught with danger. Like many people with severe autism, Zoe becomes intensely angry when something goes wrong with either device. She starts banging, grabs my shoulder, and pulls my hair as I’m driving. She’s already yanked off two rear door handles, which we replaced. But, like many autism parents, I cope, and accommodate her needs as best I can.  

Now because of the Covid-19 pandemic raging since mid March, all of her activities are shut down: the day program, weekly swimming at the Y, and her favorite, weekly therapeutic horseback riding. So now there are more car rides. And at home, more tantrums, sleep disturbance, broken furniture and scratches and bruises. But again, I do my best to handle it. 

Last Sunday was different. Her wild tantrum in the car was the type that required me to pull over and park. I found a large fairly empty parking lot, undid her seat belt and we got out. I give her melt-away medication her doctor prescribed for agitation/tantrums that last longer than a few minutes. I expected that she would tantrum for ten or so minutes before she’s able to get back in the car. 

But not this time. She raged, screamed, hit at me and ran through the parking lot … toward the street. I kept trying to divert her, but could not stop her without literally tackling her onto the concrete. I’m debating, should I call the police for help? Call my husband? It was the first time that I realized I could not control her, could not keep her safe.

This time, we were very lucky. A young woman from about 15 yards away hollered to me and asked if I need help. She came over, clearly calm and confident and introduced herself. She’s an off-duty police officer with experience with autism! What amazing luck—you can imagine my relief.

Avoiding physical contact, she helped me corral Zoe away from the street. While my daughter continued to grab at my face and pull my hair and clothes, she asked questions, carefully assessing the best way to help. She listened to me respectfully and followed my lead. 

When Zoe was less agitated, I was able to give her more emergency medication and after about ten more minutes, she’s in the car, seat belted and door locked. My new friend left to enjoy her day off. 

Then I started to cry. 

I try not to dwell on what would have happened without her help. Or what might happen next time. I have so little capacity to control my daughter.

The severe autism life is precarious; it feels we are always just one minute, one tantrum, one impulsive flight away from horrific disaster, a terrible reality that has intensified during the stress of the pandemic. The young officer brought a glimmmer of hope, that training, caring and a steady calmness can help us out of our harrowing situations. My wish for Autism Awareness Month is that all first responders, from police officers to EMTs, and indeed the whole of society, learn about severe autism, not just TV-version autism. Only with knowledge of reality can the world come to our aid when we need it most.

Adrienne Benjamin is an autism mom who lives in New Britain, Connecticut.

Webinar: Accessing Educational Services During the Covid-19 Crisis

This interactive online event discussed remote instruction, federal and state guidance, issues surrounding FAPE and compensatory education and advocacy going forward. Featuring attorneys Denise Dimson Rekem and Judith Weinstock of Parles Rekem LLP. Moderated by Lisa McCauley Parles, NCSA board member.

Watch the recording on the NCSA YouTube channel here.

See the slides

Link to resources for home instruction mentioned by Lisa: linktr.ee/UMNSUCARD

Questions? info@ncsautism.org

1 in 54: Autism's Continuing Climb, with Dr. Walter Zahorodny

The latest report from the CDC indicates that 1 in 54 8-year-old children in the U.S. have autism, up from a 1-in-59 prevalence two years earlier, and 175% higher than in 2000. Our webinar features Walter Zahorodny Ph.D., Associate Professor of Pediatrics at Rutgers New Jersey Medical School, who directed the New Jersey autism monitoring site. Moderated by Jill Escher, president, NCSA

View the video recording on the NCSA YouTube channel here.

Share & Care #3: Preventing and Managing Severe Autism Behaviors at Home

Many autism families are facing tremendous hardship during the coronavirus crisis. This interactive online forum focused on strategies for families living with challenging behaviors, such as aggression, property destruction, pica, and self-injury. Featuring Matthew Siegel, MD, Maine Behavioral Healthcare, Gloria Satriale, Ed.D, JD, BSL, ACRE, Preparing Adolescents & Adults for Life, PA. Moderated by Jill Escher and Amy Lutz, NCSA.

Watch the video recording on the NCSA YouTube channel here.

Links (under construction):

Autism Spectrum Disorder: Parents’ Medication Guide, AACAP

NCSA Share & Care Webinar #2 on Activities at Home

Share & Care #2: Activities and Tips for Cooped-Up Autism Families

Amanda N Kelly, PhD, BCBA-D, LBA leads an interactive forum focusing on tips for home activities for children and adults with autism with a focus on more severe end of the spectrum. Amanda Kelly is the host of the Behaviorbabe podcast and the behaviorbabe.com website. Moderator: Feda Almaliti, Vice President, NCSA

Watch the video recording on NCSA’s YouTube channel here.

Links to resources mentioned during the event:

Behaviorbabe - Cooped Up w/Corona; social stories, educational resources, apps etc. 
https://www.behaviorbabe.com/cooped-up-w-corona

Behaviorbabe - ABA and COVID19
https://www.behaviorbabe.com/aba-and-covid19

Behaviorbabe on Facebook
https://facebook.com/Behaviorbabe/

Mission Cognition - Virtual Social Skills 
https://www.facebook.com/groups/528463368068461/?ref=share

10 Days of packets
https://drive.google.com/open?id=11Gn85SkOv1yGaZrzNOWvFJ_cIshdUqgY

Work outs at home 
https://www.youtube.com/channel/UCaDYCB5WgxlSUMEhZbmDYkQ?fbclid=IwAR1vjmctbMjjiZA10iQfynvhIfAYl2x0YDQfcTbYIobZv4GpUHaMM7opbVE

Exercise with GoNoodle for families 
https://family.gonoodle.com/

Ways to keep your kid active at home 
http://www.iowahealthieststate.com/blog/individuals/coronavirus-covid-19-home-physical-activity-health/

AFIRM Resources 
https://afirm.fpg.unc.edu/supporting-individuals-autism-through-uncertain-times

Tips for learning from home 
https://medium.com/@noel.lafratta/educational-environment-tips-for-at-home-learning-1ec9924321ad?source=linkShare-1fd18c664d36-1585068903

Special needs parenting during a pandemic 
https://humanparts.medium.com/special-needs-parenting-in-the-age-of-pandemic-e0c9320c5a58

Additional Educational Webinars - Together For Our Keiki (Children)
https://www.forourkeiki.com/spring-weekly-webinar-series

USDOE COVID Guidance for Special Ed
https://drive.google.com/file/d/1qq5okJh0EzVSHTlxxb6bsmQVwq4iM3EY/view?usp=drivesdk

NCSA Coronavirus Share & Care—Live on March 17, 11am Pacific

The coronavirus crisis poses additional challenges for individuals and families living with autism. This interactive online event provided a platform for parents and caregivers to share stories, concerns, advice, and questions. View the recording here.

Our guest commentators Lee Wachtel, MD, Medical Director, Neurobehavioral Unit, Kennedy Krieger Institute, and Alycia Halladay, PhD, Chief Science Officer, Autism Science Foundation, joined NCSA President Jill Escher and Vice President Feda Almaliti in leading the discussion. Please note that this event is intended for information and support purposes only, with no medical advice provided.

Link to the video recording here

View the recording here.

NCSA will host additional Share & Care events soon.

Links to resources mentioned during webinar:

Resources during Coronavirus for special needs: https://www.facebook.com/groups/3074955429234543/

PrAACtical Resources: Dealing with the Covid-19 Pandemic. Free downloadable resources for kids and teens who are nonverbal or minimally verbal: http://bit.ly/3902uGk 

Unemployment claims information (to come)

Info on CMS Emergency Guidance

Crib notes, courtesy of Jennifer Meis Abbanat:

Topic: Quarantining or self isolation, shelter in place with kids who have severe behavioral responses:

Wachtel: Do what you need to do to keep you and your family safe! Lower expectations to keep sanity and allow flexibility. For example, if child will be calm with more game time, okay- be flexible! Having a disability or a child with a disability puts you and your family in a different category due to the day to day challenges of this emergency crisis.  

Topic: What about people who have children that receive ABA?

Suggestions: Telehealth may be an option, not just for physicians, but now for mental health professions, and other essential workers including Behaviorist and therapists.

Topic: How to protect kids from getting sick who are not cooperative with washing hands, may lick things, touch many surfaces repetively?

Halladay: Things that can help:  (in general)
Take shoes off in house
Take coat off
Change clothes when you come into the home from being in public (clothes can harbor virus)
Wash hands
Help your children wash hands and if necessary use the High Quality Reinforcers!!!   This is the time to utilize them.  
Soap and water  is best. Hand sanitizers if available when no access to soap and water.
Also can make a sanitizer using 10parts water/1 part bleach- can use on hands, surfaces= allow to dry naturally instead of wiping dry.
Take advantage of home deliveries when possible.
When supplies are hard to get in grocery stores, call the store and let them know you have a child with special needs and cannot go and stand in line for periods of time, etc and request to set aside x, y or z items for either delivery or set a time to pick up item.  Stores are being flexible and accommodating

Topic: Medications that can help reduce anxiety, outbursts, or aggressive episodes.

Wachtel: Our kids have sensitive systems and don’t always respond as expected to medications, so be cautious “trying new” meds during this time of instability.

Things to consider: If child is currently on medication, is there room to go up on the medication to help? Optimize the doses, ie tap into sedating qualities during this time if necessary to help bring things down a few notches ( for example if they were going to the dentist, flying across country, etc you would maybe give them a more sedating dose of a medication they are on-  It is okay to use that now as well!   

Parent Guilt, maybe you can’t always follow through with something.  It is Okay!!  Give yourself permission to be even more flexible.

Escher: Helpful resource Whole Plant Access for Autism Facebook Group wpa4a.org. Useful if considering or need additional help when using medical cannabis.  

[Side Note from JMA: My own personal experience with this is I have had to now dose my son 3 x a week compared to his usual 1x a week dosing that has maintained his stability in all activities of daily living for the last 2 ½ years.  This is a trying time even for kids who “were doing well”.  Cannabis is individual with how dosing works.  But with cannabis I have flexibility to give more or less depending on what behaviors, anxiety, agitation I see.  It has helped calm his entire being down.]

Halladay and Wachtel: What to do when child is having “an out of control episode” ? Several medications can be effective to help. Benzodiazapenes, ie Xanax can work effectively and fairly rapidly, onset of action about 30 minutes. Suggestion: Have something like that on hand for when it's necessary.  Have doc prescribe a med proactively for this reason. The stress and anxiety is very real, the changes in routine and structure can increase it.  These are unusual times.

Topic:   On top of many of our kids who struggle already with sleep issues, and now adding the extra stresses and anxiety during this pandemic, is real. Escher: Son uses trazadone and melatonin.

Wachtel: Again, optimize timing of meds they may already be on, that may already cause some drowsiness. Consider all options during this crisis, ie clonodine, neurontin.

Topic: Should you cancel in home ABA session?

Halladay: Call provider- ask risk assessing questions, ie has person traveled, have a known exposure, having symptoms of any kind. Iit is a case by case basis and if you decide to continue be sure to have provider take shoes and coat off, immediately wash hands, wipe down all surfaces and tools, equipment, devices, etc used. Continuing ABA can provide the routine and structure for the child. But either way in the grand scheme of what is currently happening, it is not a big deal, it is really an individual decision.  

Topic:  Simple Strategies when routines are disrupted

Use online resources, structure day involving child ie, chores, laundry, cooking, etc, work with child to create new routine. Note:  If child wants more screen time, it is fine.  These are unusual times, give YOURSELF PERMISSION  if it helps the child, it will help you!

When in a shelter in place situation, you are still allowed to take walks, get outside yet still avoiding others with social distancing.  Scooter, bicycling, hikes. Everyone is doing their best, despite a lot of confusion.

Public playgrounds- not a good idea.  Virus can survive on surfaces of play equipment.  

Suggestion:  Create a calm down space in your home

• my suggestions:   Create a fort. (Use a sheet over a small desk and allow child to put what they like into fort)

• -Create a positive sensory experience for child, ie put flour in a balloon, a great squishy fidget item.  Or beans or rice.  

• Use what sensory items or environments help calm your child, esp during this time.

Topic: Water Aversions for Kids, what to do!

Use hand sanitizer, use Clorox wipes, or can put soap on a damp washcloth and wipe child’s hands thoroughly. This is a time to use high reinforcers (ie if child wants a bowl of chips, great use this reinforcer)

Allow community to help.  People, neighbors want to help and share resources

Topic:  Parents who feel guilty for not doing homework, school work, etc

  ****Do NOT FEEL GUILTY!***** This is an emergency crisis, it is about getting through the day!  Survival!!! It is okay if you need to indulge your kiddos as necessary to get through this time!! Ie more screen time, more snacks, more of this or that to keep things calm With No guilt! Safety and Sanity FIRST

Topic:  Finances during this challenging time

Links to insurance, disability, FMLA, Medicare/Medicaid information will be posted

Some options:

1. Work remotely, even if you need to adjust things to make it work, be flexible, modify if possible

2. Family Medical Leave

3. Unemployment (and due to pandemic some states have new relaxed requirements)

Many schools are offering free/reduced lunches ie grab and go boxes.  Ask local school if available.

Question:  A special education teacher who teaches age 3-5 asks how to do distance teaching for this age?

Suggestions:   Do anything that will keep the kids occupied- art, music, crafts, games. Learning can look different- that is fine. Even if a kid wants to watch Frozen 11 all day or 4x in a row, let them if it creates a calm environment for everyone.  

Escher: Stay HOME! The less we travel, the more we individually hunker down, will help flatten the curve of the outbreak. Amazon has changed some policies during this time.

Suggestion for deliveries:  unpack boxes outside, wipe down what you are bringing into the home, use all precautions when receiving a delivery , or signing for a delivery.

Topic:  IEP

Almaliti-   If school suspends school activities for regular education students, they do not need to provide compensatory education services for those in special ed.  Only if they provide coursework or activities or anything for general ed students, then they must provide for special education students.

Everyone needs to be patient with schools, providers, etc

Take Away:  Do what you need to do to get through the day.  

Recognize in an ideal world we would want a, b, or c- but it is not right now so 

Be Kind to Yourself!

Help NCSA Spread #AuthenticAwareness During Autism Awareness Month

For April 2020’s Autism Awareness Month NCSA will be spreading #AuthenticAwareness of autism.

If you are willing to share your story/fears/hopes/advice in 50-300 words, with image(s), please email us directly at info@ncsautism.org before March 13. We will use these images and blurbs in social media and our blog.

Whether jolly or anguished or anywhere in between, it need only be true and heartfelt, what you want the community to know. We are happy to anonymize if preferred. 

Severe autism must not be hidden in the shadows, stigmatized or trivialized—your stories are so important and NCSA will always support #AuthenticAwareness. Thank you!