"Most people do not listen with the intent to understand. They listen with the intent to reply." Stephen Covey

Recently I attended a women's retreat in Alabama. The highlight for me was a conversation that happened because one of the speakers, Tammy Tkach, challenged us to listen to others without interrupting.  She said let someone else tell you their story, and even though you may be tempted to interject yours, don't.  Just listen.

During a break, I looked across the table, and there sat Marguerite.  I asked where she was from.  She said, Baton Rouge.  I nodded, kept my mouth shut, and continued to listen.  She grew up south of Baton Rouge.  She met her husband, while in college there, and moved to the area.  I smiled, leaned in, and kept listening.  She had taught middle school for 30 plus years, and is now retired.

"When you talk, you are only repeating what you already know.  But if you listen, you may learn something new." Dalai Lama 

Next came the gem of her story.  She told me other teachers would always ask her why her students were so well behaved, why they followed her directions, and stayed in line.  She said it was simple.  When someone was misbehaving, she didn't yell at them across the room.  She motioned them to come to her.  She would have a private conversation with them, asking them to tell her what they were doing wrong.  She asked them why they were doing it, to help them think about what they had done.  Then she would say,  "Now are you going to do that again?"  This gave them the opportunity to make their own decision and be responsible for their actions.  As she shared, I could hear the love and respect she had for each child, the lesson of respecting others she was passing on to them.

"One of the most sincere forms of respect is actually listening to what another has to say." Bryant H. McGill

Thank you Tammy, for the challenge.  Thank you Marguerite, for your story.  A great lesson for this mom who is always learning.

Until Next Time,

Know The Hope!

Tammy

The views and opinions expressed in this blog are the those of the author and do not necessarily reflect the official views or opinions of Autism Tennessee. The author and the blog are not be held responsible for any misuse, reuse, recycled and cited and/or uncited copies of content within this blog by others.

For me, like many of you, a week long stay in a hospital room sounds like a nightmare! It is NOT the Four Seasons and it’s NOT a quaint AirBnB and I want a refund! All jokes aside, we had no idea what to expect when we were told that our sweet Eva Rose had to do a four to seven day stay in the hospital for a twenty-four hour EEG. First and foremost, why in the WORLD do they call it a twenty-four hour EEG when it’s really a twenty-four/seven EEG?! Come on Docs, you really need to step-up your test naming game. I feel it’s important to share this experience with families who are about to traverse the same path as we did. This is our story of our six day stay at Monroe Carell Jr. Children’s Hospital at Vandy and the weeks leading up to our stay.

Eva Rose is an extremely joyful, six-year-old kindergarten student with Autism. She is severely speech delayed and started having visible seizures in June of this year. She started having these “episodes” two weeks before her, perfectly timed, six-year-old wellness checkup with her PCP.  We discussed what we were seeing and how often they were happening; which at that point, she was having maybe two or three a week. I had no idea what was happening when, for seconds at a time, she would fuzz out (a.k.a. poop eyes. All of you know that look), wring her hands, take weird breaths and then go straight to sleep. I witnessed this a few times before I realized or even thought that she might be having seizures. If you aren’t with her all the time, you would have no idea that she was having seizures. It happens so quickly that most people miss it unless, those who know what to look for, point it out. If you’re not familiar with absence seizures, you would miss it too. Due to her amazing brain being wired differently, she does odd things all the time, so sometimes it’s hard to catch things like this. After the wellness checkup with her PCP, he referred us to Vandy Kids to do an EEG.

When we arrived at Vandy Children’s Neuro in Franklin, our wait was relatively short. We dread waiting in waiting rooms. She wants to run all over the place, meet reluctant new friends and collect ALL the stickers and coloring pages that are available. Eva Rose is quite the overachiever, so she proceeded to have an episode in the waiting room minutes before they took her back. She slept in the room while the Nurse Practitioner took our information and explained the immediate options to us. We woke her up so the tech could hook her up with twenty-five electrodes, which we thought

 would be a nightmare all on its own, but Eva Rose surprised us all. The tech was fast and phenomenal! The tech wrapped up her head so she wouldn’t mess with the electrodes. For Eva Rose, the key to a successful electrode placement is “Peppa Pig” and YouTube. Try to have something handy for your child to watch, play or listen to. I was able to crawl in the bed with her to soothe her if need be. The first test was the pinwheel test. This is where the child will blow on a pinwheel for three minutes. Then, they throw a Rave in the tiny room that will make a non-epileptic have a seizure (think strobe lights). This part was very, very hard for Eva Rose. We didn’t think we would get two minutes out of her let alone thirty. I believe they were able to record twenty-two minutes - YAY GOD! Bring a hat to put on your child or a hair tie to pull back the hair. It will be greasy and their hair will be wild when they are done. They use some sort of gel for the electrode connector. It rinses off easily with soap and warm water.

After this first EEG, we received the results the next day. They were able to capture enough on the EEG to move onto the next test, which was an MRI. This time, we arrived at Monroe Carrell Jr. in downtown Nashville. When you arrive, if you are going to Vandy, park in visitor or patient parking in the parking garage, it is free. Park on the second level, because you will need to walk across the bridge to enter the actual hospital. If you can’t find a spot, there are elevators that will take you to the second floor. Either way, you just need to get to the second floor to cross the bridge. The imagining center is located on the first floor of the hospital. You can either take the steps or an elevator down. There are several floor toys and books for your child in the lobby while you wait. Our wait time was super short for the MRI. There is also a beautiful Koi pond and courtyard to walk around in if your wait happens to be a bit longer than expected. They called her back very quickly and she was treated like a princess. They have all kinds of toys and markers that they can write on their bed sheets with! Eva Rose was in Heaven! The nurses will ask a bunch of questions, while you get your child in their hospital gown and non-slip socks. I asked for a pull-up just in case. The Anesthesiologist will come talk to you first and then take your child to get their “pictures” made. If your child has ASD, ask for the liquid cocktail before they put them under. It helps tremendously with calming them before they are put under and helps with the waking up process. It does take them a bit longer to wake up (which, sometimes is NOT conducive for the nursing staff), but it works wonders for a child with ASD. Take the time to let them wake up fully. I learned this the hard way during our second MRI. During the MRI, you can go enjoy a meal at two of the cafes in the hospital if you are at Vandy. You will give the nurse your number and they will call you when your child is done and waking up. My child LOVES anything that rolls, so she opted for the wheel ‘chariot’ to take her to the car. My advice here is to have your husband, partner or whoever is there with you to go grab the vehicle as soon as your child starts to wake up. The nurses want your child to drink and have a bite to eat before they will release them. Our exit after the first MRI went smoothly. The second one, not so much. I’ll explain that in a minute.

We received the results from the MRI two days later. It’s never what you want to hear, but we were prepared for the news. Eva Rose has a lesion in her left temporal lobe. I immediately think it’s the size of a watermelon. When in fact, it is the size of a small marble. For the first time in my life, I did NOT get online and research the crap out of this. I love the Lord and He has covered me with a sense of calm that I will never be able to explain. All I know is His Hand is all over this. The next test was the dreaded twenty-four hour EEG in the EMU (epilepsy monitoring unit) at Monroe Carrell Jr. Hospital at Vandy. We had a sweet friend reach out through Facebook (see, there are still some great things about Facebook) who works in the EEG field. She sent us a video to watch of a young girl who had gone through the twenty-four hour EEG process too. When she had hers done, there was no information for her family on what to expect while in the hospital. Her father filmed the entire experience for people like us who might feel like a fish out of water. The video was exactly what we needed to watch to prepare for the stay. The only thing it did not prepare us for was dealing with a child with ASD. It’s a lot to ask of a compliant child, let alone a child with ASD.

Since we are lucky enough to have this great hospital in our city, I only packed Eva Rose’s bag for the possible seven days she might be staying. We didn’t know what our room would look like and if all three of us could stay in there without killing each other. I packed an overnight bag, because I knew I could run home to grab whatever I needed.

Here are some great tips on what to pack for your child.

Because your child is literally tethered to the wall with a backpack that holds the box that all the wires are attached to, so they can freely move around the room, you need to pack clothes that are comfortable. I packed seven footless, zip-up pjs with house slippers. I did pack her outfits every day, so she felt like it was a new day, rather than staying in pjs for a week (although, who wouldn’t LOVE a week in pjs lol?!). Nothing can go over their heads, so think button up blouses or shirts. I packed three scarves to dress up her “helmet”. I believe we used one the first night and didn’t use another one the rest of the time. It’s cute, but not necessary. You can always color on the helmet or decorate it to make it fun. The room tends to get dirty real quick, so daily, I let her stand in the shower as I gave her a sponge bath. I did not let her sit down. It’s risky to even do this, but get help so you can help your child be as comfortable as possible. I don’t know about you, but I have to have clean feet before I go to bed. Each room has a thermostat in them. This is for your comfort and also can be used to trigger seizures. Sometimes, they will make the room extremely hot or cold. We didn’t have to do that, thank GOD, but be prepared just in case. Also, I would bring your own pillow and perhaps a blanket or two. The towels in the hospital are terrible, so bring a couple of towels. Again, I’m so grateful we live in town so we could make a quick trip home if we needed something.

This part is extremely important. I was freaking out thinking of my poor, little girl being tethered to the wall for a week. WHAT IN THE WORLD IS SHE GOING TO DO FOR A WEEK, other than think of 2,564 ways to bust out of that joint?!?!?! This was the question that ran rampant through my head for weeks prior to this stay. Eva Rose is super-duper energetic. I truly believe the phrases “bouncing off the walls” or “climbing the walls” were created because of her! She LOVES puzzles, coloring, LEGOS, iPad games and of course her favorite stories “Peppa Pig” and “Zig and Sharko”.

We bribed her with a Moana LEGO set that we gave her the first night after the electrodes were placed on her head. Don’t you dare think for one minute that you will not bribe your child… you will and should in cases like this. We had amazing family and friends bring things or send things for her to open each day. It was such a HUGE blessing. They say it takes a village to raise a child. In Eva Rose’s case, she has a booming city helping and we are beyond grateful for each of them.

 At the hospital, they have Child Life Specialists who also walk around to the rooms and offer things for the kids to do - video games, play pretend toys, etc… I would highly recommend that you pack all the toys, books and games and bring something new out each day. With that being said, make sure you bring all your chargers too. We were able to connect our Apple TV to the room’s TV, so she had all her movies and shows (and so did we). Obviously, there was WiFi available. Activities are key! 

As far as food is concerned, Eva Rose received three meals a day and we got one meal with each of hers. 

The menu was extensive and honestly GREAT! We did bring snacks and ran down to the cafes a few times, but the food was surprisingly good. She’s not a picky eater, but a very clean eater. She hates fried foods, so I was pretty impressed with the options. There is a break room, if you will, that provides coffee, water and ice twenty-four/seven. Also, in that room there is a little freezer with ice cream - this saved the day/night on many occasions. 

Now, this part is NOT what I like to write about, but it’s imperative, especially, if you have a child with ASD to be prepared. Our arrival time for check-in was 1:30p. We checked in downstairs on the first floor where she had her MRI (where we had such a great experience). One hour passed by, two hours passed by, and then, three. Eva Rose was losing her mind and so were we. I believe we called anyone and everyone who works at Vandy with any clout - that’s how desperate we were. Like I said way back at the beginning, there were a couple floor toys, Koi pond with a courtyard, and PRAISE GOD for the gorgeous train set someone built around the corner from the lobby. Once Eva Rose found the train set, she decided to do a photo shoot of it for the next hour.

 

If anyone from Vandy reads this blog post, PLEASE for the love of all things holy, fix this waiting issue. Set-up some text system or something. No one could give us any info on why it was taking so long, other than there wasn’t a bed available. We totally understood that, but we should have been able to go somewhere and wait until a room was available. Then, they could have texted us and we would have shown up happy and ready to get the party started. Once Eva Rose is torqued up, it takes a long time to bring her down. I’m not asking for special privileges because my child is autistic. I’m asking for support in situations like this to make this experience as pleasant as possible for all who are waiting. Children feed off each other, typical or atypical. When one kid loses it, more will follow. There was a lady in the lobby who had a very sick child with special needs. She had been waiting for a room since her check-in time at 9:15a. At 5p she finally got her room. The young mother hadn’t had anything to eat all day, because she didn’t want to leave in case they called her name. She didn’t have any help either. This is unacceptable. Period. As smart as everyone is under that roof, I can’t believe there isn’t a solution to this issue? I hope something is resolved very soon.

When we finally got to our room, we were pleasantly shocked. The room was spacious with a pullout bed. Linens, pillows and blankets are provided and they will bring you more if you need them. There is a TV and a mini fridge. The tech came in soon after we arrived to get Eva Rose hooked up. This time it was a bit different. They use a glue substance and a dryer to apply the electrodes since they could possibly be staying on her head for days. Our tech was great! Eva Rose did really well until the last six or seven electrodes. She turned into a child that was being held down by a priest and exorcised. We let her take a little break and drink some water. We had her do the countdown of the last electrodes, which helped so much.

She was not setup for success for the application of the electrodes, because of the insane wait time we had. She didn’t have any time to look around and get comfortable in the room, which is vital in her world. After she was hooked up and had her fun little backpack to carry around, she settled down for the night. Once we got to the room and finished with the hookup, we were so impressed with all the nurses and doctors. They truly made our six day stay the best it could have been. They ended up recording five seizures.

There is a process when your child has a seizure.

  The first time is a bit overwhelming and then you get used to it. You will have a button to push, like you’re on Jeopardy, when your child has a seizure. A slew of humans descend super fast into the room to go through their checklist. You will also have a piece of paper where you document time and what the seizure looked like. That will be turned in as your homework when you are discharged. In the room, there is a camera that literally follows your child around the room the entire time.

Someone is monitoring and listening to your child the entire time, so don’t strip down naked unless you are in the bathroom with the door shut, FYI.

Once your child is set free from the bondage of the electrodes, the glue is still stuck to their head. No one gave us any instruction on how to take it off other than acetone. My husband did a little google search and found a concoction made by a hairdresser for this very thing. If your child is super young and isn’t able to keep this solution out of their eyes, don’t even try it. It needs to sit on their head for ten to fifteen minutes before you wash their hair like normal. It worked perfectly for Eva Rose.

After our lovely stay at Vandy, we had one more test the next week. Eva Rose needed a contrast MRI. Again, the wait time for the MRI was little to none. When they took us back, she got to ride a Frozen car back to the room. She was soooo excited! All was the same getting her ready for her “pictures”. They took her back and we went to grab a bite to eat. This MRI was a little longer because they were doing some extra things. When she woke up, she drank and ate immediately. The nurses asked her if she wanted to be carried or to ride on the wheelchair to the car and OF COURSE she chose the wheel “chariot’. So, it was me and the awesome nurse, that took care of Eva Rose, wheeling her out. This is the part where I should have allowed her to wake up slower than I did. She will be the cheapest date EVER! She was still pretty loopy, but kept jumping off the wheelchair and then realizing she couldn’t stand up. She did NOT want to listen or try to hold our hands and walk like a normal person. She was screaming from the top of her lungs, so pretty much, she was every super drunk person you’ve ever seen on lower broad wrapped up into forty-three pounds of red-head fury. It was not a pleasant experience for anyone. Note to self, let your child wake up slowly. Do NOT rush the process. The car ride home was an absolute disaster. I was begging to get pulled over, so I could go sleep for twenty-four hours in jail cell. That’s a joke… sort of. Once we got home, she was her normal self, all smiles and energy.

If you are still reading this, I hope it has helped you prepare for your stay in the EMU. It truly was a great experience once we got in the room. You are going to have moments, because we have those on the daily anyway. Just don’t forget to breathe or take a break. Good luck!!

Content from US Department of Labor letter

2019_08_08_2A_FMLA.pdf

This letter responds to your request for an opinion on whether an employee may take leave under the Family and Medical Leave Act (FMLA) to attend a Committee on Special Education (CSE) meeting to discuss the Individualized Education Program (IEP) of the employee’s son or daughter.1 This opinion is based exclusively on the facts you have presented. You represent that you do not seek this opinion for any party that the Wage and Hour Division (WHD) is currently investigating or for use in any litigation that commenced prior to your request.
BACKGROUND You represent that your two children have qualifying serious health conditions under the FMLA. 2 You state that your wife has received a certification from your children’s doctors supporting your wife’s need to take intermittent leave to care for your children and that her employer has approved her taking FMLA leave intermittently to bring the children to medical appointments. You state that your wife’s employer has not, however, approved her request to take FMLA leave intermittently to attend CSE/IEP meetings. You explain that your children receive pediatrician-prescribed occupational, speech, and physical therapy provided by their school district, and that four times a year their school holds CSE/IEP meetings to review their educational and medical needs, well-being, and progress.3 You explain that these meetings include participation by “a speech pathologist, school psychologist, occupational therapist and/or physical therapist employed or contracted by the school district to provide services to the … child under the child’s IEP,” as well as teachers and school administrators. These participants provide updates regarding your children’s progress and areas of concern; review recommendations made by your children’s doctors; review any new test 1 The Individuals with Disabilities Education Act (IDEA) requires public schools to develop an IEP for a son or daughter who receives special education and related services with input from the child and the child’s parents, teachers, school administrators, and related services personnel. Under the IDEA, “related services” include such services as audiology services, counseling services, medical services, physical therapy, psychological services, speech-language pathology services, rehabilitation counseling services, among others. See A Guide to the Individualized Education Program, U.S. Department of Education (July 2000), available at https://www2.ed.gov/parents/needs/speced/iepguide/index.html; see also 34 C.F.R. § 300.320 (defining an IEP). 2 See 29 U.S.C. § 2611(11) (defining serious health condition). 3 Your letter refers to these meetings as “Committee on Special Education (CSE)” meetings, but the analysis and conclusion in this opinion letter apply to any meetings held pursuant to the IDEA, and any applicable state or local law, regardless of the term used for such meetings. 2 results; and may make recommendations for additional therapy. You ask if your wife may use intermittent FMLA leave for the care of a child to attend these meetings.
GENERAL LEGAL PRINCIPLES The FMLA defines a “serious health condition” as an illness, injury, impairment, or physical or mental condition that involves inpatient care or continuing treatment by a healthcare provider and provides, in relevant part, that an eligible employee of a covered employer may take up to twelve weeks of job-protected, unpaid FMLA leave per year “to care for the spouse, or a son, daughter, or parent, of the employee, if such spouse, son, daughter, or parent has a serious health condition.” 29 U.S.C. § 2612(a)(1)(C); see also 29 U.S.C. § 2611(11) (defining serious health condition); 29 C.F.R. § 825.112–.115. Care for a family member includes “both physical and psychological care” and “mak[ing] arrangements for changes in care ….” 29 C.F.R. § 825.124(a)–(b). An employee may use FMLA leave intermittently or on a reduced leave schedule when medically necessary because of a family member’s serious health condition. See 29 U.S.C. § 2612(b)(1); 29 C.F.R. § 825.202. However, an employer may require an employee to timely provide a copy of a certification—issued by a health care provider and meeting certain criteria— supporting his or her request to take such leave. See 29 U.S.C. § 2613(a)–(b); 29 C.F.R. § 825.305–.306.
OPINION Based on the facts you provided, your wife’s need to attend CSE/IEP meetings addressing the educational and special medical needs of your children—who have serious health conditions as certified by a health care provider—is a qualifying reason for taking intermittent FMLA leave. Your wife’s attendance at these CSE/IEP meetings is “care for a family member … with a serious health condition.” 29 C.F.R. § 825.100(a); see also 29 U.S.C. § 2612(a)(1)(C); 29 C.F.R. § 825.112(a)(3). As noted above, “to care for” a family member with a serious health condition includes “to make arrangements for changes in care.” 29 C.F.R. § 825.124(b). This includes taking leave to help make medical decisions on behalf of a hospitalized parent or to make arrangements to find suitable childcare for a child with a disability. See Romans v. Michigan Dep’t of Human Servs., 668 F.3d 826, 840–41 (6th Cir. 2012) (holding that an employee was entitled to take FMLA leave to join his sister at a hospital to make decision regarding whether to keep their mother on life support); Wegelin v. Reading Hosp. & Med. Ctr., 909 F. Supp. 2d 421, 429–30 (E.D. Pa. 2012) (holding that an employee was entitled to take FMLA leave to find a daycare to care for her daughter with an autism spectrum disorder and a visual impairment); see also Ballard v. Chicago Park Dist., 741 F.3d 838, 840 (7th Cir. 2014) (noting that the FMLA “speaks in terms of ‘care,’ not ‘treatment’”). Additionally, an employee may “make arrangements for changes in care,” even if that care does not involve a facility that provides medical treatment. Wegelin, 909 F. Supp. 2d at 430 (quoting 29 C.F.R. § 825.124). This conclusion is consistent with existing WHD policy. In a previous opinion letter, WHD stated that an employee was entitled to take FMLA leave to attend “[c]are [c]onferences related to her mother’s health condition,” because her attendance at these conferences was “clearly 3 essential to the employee’s ability to provide appropriate physical or psychological care” to her mother. WHD Opinion Letter FMLA-94, 1998 WL 1147751, at *1 (Feb. 27, 1998). Similarly here, it appears that your wife’s attendance at IEP meetings is “essential to [her] ability to provide appropriate physical or psychological care” to your children. Id. Your wife attends these meetings to help participants make medical decisions concerning your children’s medically-prescribed speech, physical, and occupational therapy; to discuss your children’s wellbeing and progress with the providers of such services; and to ensure that your children’s school environment is suitable to their medical, social, and academic needs. Your child’s doctor need not be present at CSE/IEP meetings in order for your spouse’s leave to qualify for intermittent FMLA leave. We trust that this letter is responsive to your inquiry.

Sincerely, Cheryl M. Stanton Administrator

*Note: The actual name(s) was removed to protect privacy in accordance with 5 U.S.C. § 552(b)(6).

As I write this, my older daughter, Allison, is preparing to teach her first college course in behavior.  She’s had years under her belt as a BCBA (Board Certified Behavior Analyst), and countless observation hours as a sibling.  I have no doubt she will have valuable lessons to share with her students.  I’m grateful for passionate teachers, and I’m especially proud of this one.  

“Children are a heritage from the Lord, offspring a reward from Him.  Like arrows in the hands of a warrior are children born of one’s youth.” Psalm 127: 3, 4

When it comes to Allison’s sister, Morgan, I wonder who’s teaching who.  I am forever learning.  I’m learning not to compare her to anyone else, because it’s a precious waste of time and mental energy.  I’m learning not to limit her to what I know she can do now.  I’m looking at the rest as “things she can’t do yet”.  Together, we are working on our personal bests.  As I continue to challenge her, I’m learning she is very skilled at challenging me. 

There is a line I struggle to define all the time;  What behaviors are due to her disability, and what behaviors are within her ability to correct.  And That Line is Drawn in Shifting Sands, because Every New Person, Place, or Thing can change the equation.

Lines get blurred and meltdowns happen.  When Morgan is coming back down from a meltdown, she will often say “I was just trying to fix it”.   Me too, Morgan. Me too.  When I see her stressing and I don’t see the reason, I’ve learned to ask, “What are you trying to fix?”.  Using her language helps her find her words.

For Morgan’s sake, for her independence and quality of life, we have to keep pushing that line.  We have to continue to do the hard things until they become the no big deal things.  When we come to an impasse, I remind her (and myself) to take a deep breath.  I remind her that I love her, and we can always try again.  Each time we succeed, it’s worth all the lessons we’ve both learned.

Back to Allison.  It was clear from the beginning that she was going to keep me on my toes.  I can still see her at four years old, with her hands on her hips, explaining her point of view.  We definitely bumped heads and hearts along the way.  Despite my first time parent blunders, she’s become a pretty amazing young woman.

And all this time I thought I was their teacher.  Turns out, they are mine.

Until Next Time,

Know The Hope!

Tammy

The views and opinions expressed in this blog are the those of the author and do not necessarily reflect the official views or opinions of Autism Tennessee. The author and the blog are not be held responsible for any misuse, reuse, recycled and cited and/or uncited copies of content within this blog by others.

Recently, we brought on a new (amazing) part-time staff member, Amy Correia, as well as an intern from Benton Hall Academy, Michael Sarmento.. 

New people in the office are wonderful because they allow us to reevaluate what we are doing and why. New people bring new ideas, insight, and inspiration. 

As we hashed out all the logistics for 14 different upcoming events during a staff meeting, and discussed new policy issues around ABA and FMLA, our new staff member stopped us in our tracks. 

She has been working on our HELPline, helping families with issues on the individual level. As she sat in the meeting she was blown away by the work we are doing at every level to enrich the lives of individuals on the autism spectrum and their families. While she heard about the individual struggles over her first two weeks, now she was hearing about the community partnerships, community education, family fun events, teen groups, adult social clubs, trainings, consulting projects, legislative and policy efforts, and more. 

As she reflected on the amazing work we do, I was re-energized. I was reminded how every single day the team at Autism TN makes a big difference.   

I hope you will all join us for the Autism Awareness Pajama Walk, September 28th, so we can celebrate what autism can do. 

See you there!

Workplace Readiness Workshop, Weekend Edition is coming up this weekend!!

You have questions, we have answers!!

Hayley J. Shelton, Founder of Park Avenue Consulting Services, LLCPark Avenue Career Services (501c3), and Leader of The Iris Club Nashville.

To determine how this information impacts your coverage, call the number on the back of your insurance card.
Insurance coverage benefits vary widely.

From our friends at Autism Resources of the Mid-South

The Tennessee Department of Commerce and Insurance issued a bulletin on 8-1-2019. 8-1-19-Bulletin.pdf

In short, the bulletin clarifies that all fully insured health benefit plans subject to regulation by TN DC&I (including all individual, small group and large group health benefit plans) must provide coverage for mental health conditions, including autism as defined by the DSM covered services must comply with federal mental health parity law (Paul Wellstone and Pete Dominici Mental Health Parity and Addiction Equity Act; MHPAEA); which prohibits plans from imposing a financial requirement or treatment limit restriction that is more restrictive than the predominant financial requirement or treatment limit restriction that applies to substantially all medical/surgical benefits.

The bulletin also clarifies that ABA is NOT experimental and must be covered at parity as outlined by MHPAEA

In addition to clarifying that ABA must be a covered service in all fully insured plans, it is our opinion that this bulletin will prohibit plans from imposing restrictive hour limits (e.g., 20 hours ABA/month) that currently exist in some Tennessee plans.

There will be follow up meetings scheduled with Commerce and Insurance later this month to discuss the implications of the bulletin in further detail and ARMS will keep you posted with any additional information

Please note that self-funded plans are NOT regulated by the DC&I and therefore not subject to this bulletin.

To determine how this information impacts your coverage, call the number on the back of your insurance card. Insurance coverage limits vary widely. 

"I am brave. I am bruised.  I am who I'm meant to be.  This is me." - Lettie Lutz in The Greatest Showman

Reconnecting with family can be very joyful; going over old memories, catching up on hugs, sharing what's new,...  but for Morgan, it can also bring a lot of anxiety.  A couple of the hallmarks of autism are the difficulties with social interaction and communication.  This is partly due to the inability to understand other people's thoughts and feelings.

Not saying family is scary, but whenever any large group of relatives come together, there are numerous opportunities for things to go awry for the best of us.  For Morgan, "too many friends" for "too long", with no understanding of when the shindig is going to wrap up,  can make her "all done" much earlier than the rest of us.  For this reason, in the early years, I became more and more weary of family gatherings.  Little by little, I backed off, encouraging everyone else to carry on without Morgan and Mom.

Now Morgan is 25.  Her cousins are grown and married, with kids of their own.  We've missed a lot of years.  Since her dad and his sisters all have summer birthdays, we decided to gather to celebrate.  This time, to relieve my anxiety, we called ahead with a game plan.  We had the conversation with family, letting them know that Morgan may have to come for a short time, and then take a break.  And It wouldn't be because anyone did anything wrong.  It would just be the best way for everyone to have a good time.

    Rudy and his sisters

Morgan meeting her new cousin, who lives in Canada now

We booked a hotel nearby, where Morgan and I could retreat when needed.  We really enjoyed seeing family again.  When she was "all done", we left dad to relax and continue catching up with everyone.  We went for a swim, took walks, rides, and naps, and came back ready to visit some more.  She told me twice that weekend, "I doing a good job.  I'm trying to be brave."  She did do well.  I'm thankful for how far she's come.  I'm thankful for learning to drop the veal, and be brave enough to have the conversation, so we can just be ourselves.  It turned out to be a very enjoyable visit.

Hotel SmilesBreak Time with Dad

 

Until Next Time,

Know The Hope!

Tammy Vice and Family

The views and opinions expressed in this blog are the those of the author and do not necessarily reflect the official views or opinions of Autism Tennessee. The author and the blog are not be held responsible for any misuse, reuse, recycled and cited and/or uncited copies of content within this blog by others.

WHO ARE WE?
We are a group of researchers at Vanderbilt University, and we are currently trying to understand how children with Autism process language and how this ability relates to communication and social skills.

WHAT IS INVOLVED IN THIS STUDY?
You will fill out some questionnaires. We will conduct some cognitive and language assessments with your child. Your child will also watch pictures on a computer screen that records where he/she looks while listening to some sentences and complete some simple computer games. Total participation time will be about 4 hours with short breaks between games/tasks. 

DO I QUALIFY?
We are looking for children between 8 and 15 years old, with an autism spectrum disorder diagnosis (including Autism Spectrum Disorder, Asperger’s syndrome, Pervasive Developmental Disorder, or related diagnoses) with normal or corrected to normal hearing and vision. Verbal ability is required for this study.

HOW MUCH WILL I BE PAID?
You will receive $40 for full study completion and a report on your child’s language and cognitive development at no cost to you. On-site parking is complimentary as well. 

This study was approved by the Behavioral and Social Sciences IRB at Vanderbilt University (IRB #180227) on 04/17/2018.

How My Best Friend Helped Me See Myself For Me- Not My Autism

By Chloe Sybert

Hi! I’m Chloe, and I am convinced if you met my best friend Jasmyn and asked her to describe me, the fact that I am autistic wouldn’t even pop up in your conversation. This isn’t because she denies I have challenges, she acknowledges them- and has helped me through many, she simply sees me for who I really am and my deficits aren’t it. For years before I met her, I struggled to have this mindset. I hated who I was because all I saw was everything I couldn’t do, or rather everything statistics or websites said I couldn’t do. I would read that many autistics don’t find employment and I would take that opinion as a fact (which is a foolish because what do they know about my future?) I tried passing which is a term used to describe surpassing your autistic symptoms and coping skills in order to pass as neurotypical (I was miserable) I even prayed my autism away. So, when I met Jasmyn, I almost didn’t expect her to be so accepting and kind to me. This was a far cry from how I was bullied through grade school. Throughout the years of being friends with her, I have slowly learned that I deserve to be respected, I should treat myself like a friend, and I am more than a diagnosis. So, in honor of best friend’s day on June 8^th, please allow me to gush about mine.

How Jasmyn helped me embrace my autism:

1. Shortly before I met her, I had ended a toxic relationship that I had only thought was good for me. I couldn’t see the red flags until after it ended. But looking back I learned that when this person used my autism as an excuse to invalidate my feelings and hurt me, that was wrong! Jasmyn never made me feel bad for crying more than others might find necessary, she never mocked me for getting too sentimental ( she was sentimental too ), and she was sincerely sorry if she hurt me. She didn’t use my disability as an excuse to hurt me or be rude. She appreciated me, never took me for granted, and she reminded me my feelings are valid.

2. She encouraged me to talk positively about myself. This was hard for me at times, but she never got impatient or rude. She reminded me about my strengths and all I loved about myself during a time of great stress. I was battling OCD, and to get me through that time I wrote in journals called encouragement books. When we were hanging out once, and I was upset, I told her I couldn’t find anything to love about myself. She was very kind and responded with, “Of course you do” and she grabbed my book and read my own words aloud with no judgment at all.

3. Jasmyn is very encouraging and is always reminding me to remember who I am. She never brings up my autism unless I’m insecure about it and she is telling me that she sees me for me and not my disability. She is very kind and has said things to me that I have kept with me because it has greatly improved my confidence. Over time I’ve caught myself being mean to me and I would stop myself because friends like Jasmyn wouldn’t treat me like that so I shouldn’t either, autism, or no autism.

4. Finally, I can’t leave this out. I have always struggled to see myself as strong and capable. I’ve overcome a lot but I am my own worst critic. Well, Jasmyn, who’s a wonderful artist, painted me as a warrior. This means more to me than I can put into words! It is a reminder I am not my disability, I am loved, and I am capable. It is my prized possession and I will treasure it always.

In conclusion, my best friend has shown me that there is more to me than a label, I am a wonderful friend with lots to offer, and I deserve to treat myself with love, kindness, and respect, as well as get treated that way by other people. So to Jasmyn, thank you for being my friend.

The views and opinions expressed in this blog are the those of the author and do not necessarily reflect the official views or opinions of Autism Tennessee. The author and the blog are not be held responsible for any misuse, reuse, recycled and cited and/or uncited copies of content within this blog by others.