“There are no traffic jams along the extra mile.” - Roger Staubach

It’s a question my dad, my daughters’ dad, and countless other dads have heard many times. Children can be so ready to get to the destination that they wish away the road time. I remember nodding off to sleep in the back seat, hoping to wake up just in time to be THERE. Now that I’m older, I’ve learned that the miles along the way can be just as meaningful. I don’t want to sleep through the Here and Now.

Building the Trike with Dad. “We got this!”

Morgan, taking her babies for a ride.

Dad and Allison Making Fudge

Mission Accomplished

Morgan, showing her “Three Wheels” to Mamaw and Papaw

Happy Father’s Day to my dad, my girl’s dad, and all those dads that go the extra mile for their families. Hugs and Hearts! 

Until Next Time,

Know The Hope!

Tammy Vice

Disclaimer: **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.

“I know you think you understand what you thought I said, but I'm not sure you realize that what you heard is not what I meant.” Robert McCloskey

Have you ever watched a video of a crying baby receiving a hearing aid? When they hear their mother’s voice for the first time, their crying stops. Their eyes open wide. They become calm at first, then smile or even squeal with delight? Then, of course, the mother begins to cry. It’s that moment of mutual connection that those of us who hear often take for granted.

If you have ever seen one of our home videos on YouTube or Facebook Live, you will see All Things Autism. What you may not recognize is that Morgan has a hearing, or rather a listening, impairment. Even though her physical hearing is intact, her ability to process and interpret sound is interrupted by something called CAPD (Central Auditory Processing Disorder). My unscientific explanation is that there is a glitch in her central auditory nervous system wiring. This is a separate diagnosis from her autism. For signs and symptoms of CAPD, visit asha.org . American Speech-Language-Hearing Association.

It is hard for Morgan to separate and make sense of sounds, especially speech. There is actually a slight delay in what she hears. When we are at home, in a one on one, quiet environment, it’s much easier for her to navigate. We’ve learned to slow down and give her time to respond. You will see she is very talkative and engaged. She is Very Able to express herself in our home environment.

Morgan and Papaw showing off an April window painting they did together.

When Morgan is in a group setting, there are lots of competing sounds and distractions. Large gatherings can be confusing and stressful. This usually stops her from initiating engagement. When she is overwhelmed, her reaction is to grunt and vocalize her displeasure, in order to get away. Or she will completely shut down, squinting her eyes, bending over and putting her head in her hands. Unfortunately for her, this makes others see her as Less Able than she actually is. When we are able to know what to expect, and provide Morgan with a schedule ahead of time, this takes down the stress and helps her be more successful.

As things speed back up again, we find ourselves stumbling a little more, trying to regain our footing in this world. I guess that’s life, with or without disabilities. I still believe the joy of a meaningful life ride is worth the learning bumps we experience along the way.

There is a giant chasm between hearing and listening. This year of slowing down has really opened my eyes and my heart to the difference. Many of us have forgotten how to listen. It takes time to really get to know anyone. It takes time, patience, and a sincere caring effort to get those moments of mutual connection, where we can all truly communicate.

We openly share our family’s journey with autism in the hope of creating understanding and acceptance for all individuals with disabilities.

Until Next Time,

Know The Hope,

Tammy

Disclaimer: **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.

“Aren’t two sparrows sold for a penny? Yet not one of them falls to the ground without your Father’s consent. But even the hairs of your head have all been counted. So don’t be afraid therefore; you are worth more than many sparrows.”

‭‭Matthew‬ ‭10:29-31‬ ‭HCSB‬‬

It was one of those mornings. We really needed to get out the door on time. The list of things to do was long and time was short. As we fixed our breakfast and Morgan’s lunch, I was running down that list in my head. I was hoping we’d get out the door with everything we needed the first time. There was a text with a task to handle, an unexpected knock on the door. “Hello Mamaw. What are you doing here?” Come on in and join our morning circus. A quick hello, and I continued my dance to keep things on track.

As we were about to get in the car, we heard a loud scratching and rustling sound coming from the down spout of the gutter. A bird had slipped down the hole. Bless his heart. He chose a really inconvenient time to get himself in that situation. We tapped on the spout for a few seconds, shook the bottom, hoping we could get his attention to turn around and see a better way out. We reasoned surely he’d eventually get tired and fall to the bottom, seeing the light there and be able to make it out on his own. I did say a little prayer for him as I cranked up the car and drove away. After all, we had a busy day ahead us.

Sometimes we assume there’s an easy way out for others, when there’s not.

That’s how I am sometimes. I mean well, but I’m just so busy. When I got back home, all was quiet and I assumed he made it out. I went about my day and didn’t give it another thought.

“and one of you says to them, “Go in peace, keep warm, and eat well,” but you don’t give them what the body needs, what good is it? In the same way faith, if it doesn’t have works, is dead by itself.”
‭‭James‬ ‭2:16-17‬ ‭

Later that evening, I was telling Rudy all about our busy day. Then, as an afterthought, I told him about the little bird. He said, “I thought I heard something out there as I was coming in the door.“ This was 9:30 in the evening. I said, “You’re kidding. Surely he’s not still in there.” He WAS still in there, struggling. I held a flashlight while Rudy unscrewed the extension. It turned out, the drain was stopped up with leaves and mulch. Once that was removed, the little guy wasted no time getting out of there. He was a blur in the dark.

There’s more than a couple of lessons in this for me. With all my wisdom and reasoning, I’m not able to fully see another person’s situation. God is. He works best through me when I slow down and allow life’s interruptions. Whenever I get stuck in a situation, I feel like there’s no way out and no one sees me, God does. No matter how others view us, how they may overlook us, we are all valuable to God. We need to keep Helping others, Hanging in there and making a little Hopeful Noise. God is always working on our circumstances in ways we cannot see.

Until Next Time,

Know The Hope!

Tammy

Disclaimer: **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.

I am seeking support from my community and state leaders to help me raise the voices of about 150 workers at Fort Campbell to keep their jobs. They employ people with disabilities, including veterans, and are often unheard.

The U.S. Army military branch currently has the most Intergovernmental Support Agreements (IGSA) in the country. Two of those work sites include Fort Knox and Fort Campbell. Currently, more than 75% of the custodial work force at these installations are team members with significant disabilities including veterans. They work under the AbilityOne Program and contribute to the local economy, provide no strain on public assistance programs and have health care benefits.

The Army has chosen these two custodial services contracts as a quick solution to reducing costs by putting out bids for new contractors outside the AbilityOne Program who can pay lower wages and aren’t required to provide health benefits.  However, there are many other AbilityOne contracts at risk. Unfortunately, they are moving forward with a short-term plan that will have negative long-term impacts.

Given the rural locations of most Army posts (i.e. Fort Knox and Fort Campbell), it is highly unlikely that we will find competitive employment. The negative impacts of the Army’s decision are:

·       They will lose their livelihoods, homes, cars and health care.
·       They, Individuals with disabilities including veterans, will have no opportunities for competitive employment in these rural areas.
·       They will likely be forced to turn to government assistance for basic needs.
·       Their health care needs/costs will likely increase as a result of no health care benefits, depression, anxiety and no access to preventive care.

Service levels have never been a concern at these sites. GCE has served as a long-term partner with the U.S.  Army to provide custodial services since 1998 at Fort Campbell, and since 2011 at Fort Knox. They have consistently received satisfactory/outstanding/ and exceptional Contractor Performance Assessment Reporting (CPAR) scores. They prove our mettle every day.

The Army’s decision erodes at the integrity of the AbilityOne Program, leaving the employees on these contracts to suffer the consequences. The odds have already been stacked against those with disabilities. Nationwide, the AbilityOne Program provides work to more than 40,000 people - like me or my family member - with disabilities. More than 700 not-for-profits (NPAs) ensure work for people like us (i.e. with a disability).

I am writing to you to ask that you please give this decision some attention. Help them keep our jobs. Support the disabilities community by not allowing independence to be stripped away. We have been on the right track in recent years, closing the gap on employing persons with disabilities. Individuals with disabilities want to work and there is no reason why they can’t work. We do not want to turn to government assistance as a way to support our families when meaningful opportunities are out there.

I’m hopeful you hear us – the people you serve – and have faith that you will support us in living the basic, American dream.

My address is: 

My telephone number is:

Respectfully yours,

• Disability Day On The Hill

  Sunday, March 7, 2021

  Hello Disability Day On The Hill Helpers and Participants:

  We are almost there. Get excited!

  Your response has been terrific.   DDH has grown from 34 meetings to 45 meeting with legislators.  We have also grown to 34 helpers and 41 self-advocates/advocates.  YOU are the reason this event will be successful.  I worked to put helpers with the advocates who match.  I also tried to not to overload any of our helpers.

  Notes to Everyone:

  • I have attached talking points for these areas of interest for The Arc Tennessee: Table changing station, Text to 911 bill, DSP wage increase bill, and the death penalty bill.  You do not need to discuss these.  Discuss whatever topic is important to you.  The talking points are available in case they are also your area of interest.

• Notes to Helpers:

  • Please use the attached helper guide for a compass on how to facilitate your meeting.

  Thanks everyone.  I hope this is close to what you all wanted.  Contact me if you have any questions.
  

Dave

Talking points Sheet,911 Bill.docx

Death Penalty Bill.docx

SB 602_HB905_ UniversalChangingTables-FINAL.pdf

Wage Incerase Bill.docx

Helper Guide, Amended, 2-15-2021.docx

Self Advocacy Script for Meeting 2021.docx

Dave Griffin

People First Tennessee Coordinator
The Arc Tennessee
545 Mainstream Drive, Suite 100
Nashville, TN 37228
1-615-679-6997

dgriffin@thearctn.org

 

The Arc Tennessee does not discriminate based on race, color, national origin or Limited English Proficiency.  If you feel you have been discriminated against please contact me, The Arc TN's Title VI coordinator, at the number above or call  800-835-7077 ext. 22, or email imoody@thearctn.org.

This e-mail may contain PRIVILEGED and CONFIDENTIAL information and is intended only for the use of the specific individual(s) to which it is addressed.  If you are not an intended recipient of this e-mail, you are hereby notified that any unauthorized use, dissemination or copying of this e-mail or the information contained in it or attached to it is strictly prohibited.  If you have received this e-mail in error, please delete it and immediately notify the person named above by reply mail. Thank you.

  “Disability ministry is not complete until individuals with disabilities are ministering back.” - Jim Pearson (No Disabled Souls)

I recently posted this apology on Facebook to our friends, because Morgan has such a hard time breaking her stride to say an unplanned hello. It went like this:

“When we see each other at Walmart and are trying to say hello, if Morgan doesn’t acknowledge you, it’s because you’re not on her schedule. She currently doesn’t take walk-ins.
As a long term member of her staff, I am advocating for policy changes. You’re important to us and we appreciate your patience. Please hold.”

Due to her version of autism, Morgan is prone to self isolate. This year of added isolation has definitely backed us up a few steps. Morgan is very comfortable when she’s “busy relaxing” at home. The longer we’re here, the less she wants to go out. Although we need things to get back to “normal”, I admit, I’ll have to muster up my “want to” to dust off my cheerleading pompoms again.

Morgan is 27 now. Her whole life, we’ve been “working on” something. It started with speech and occupational therapy. Then it was social and emotional skills, educational and vocational skills, life skills, and as strange as it sounds, we even have to work on Joy. Don’t get me wrong. She enjoys putting seasonal events on her calendar, painting the windows, and collecting things that are the colors of the month. But it seems to me, she only tolerates people sometimes, because we can be so unpredictable. I’ve told her that friends can be messy and loud, but they are SO WORTH IT. My constant prayer is for her to just be able to relax with people and enjoy being engaged with others, without the anxiety. It breaks my heart for her that she sees every encounter as a task. We keep pushing forward, because every little successful interaction matters.

       

 Mamaw and Morgan’s                     February Window Painting

One thing I’ve been thankful to be reminded of again, during this time, is Morgan’s satisfaction when she’s accomplishing something “All Myself”. Thursday is our clean up day. As she helps change the bed sheets, wash the cloths and vacuum, I see her calm delight in doing something that she knows matters. I saw the same thing when she worked at the little sandwich shop before it shut down during the pandemic. We’ve been trying to get that feeling back again. I do believe in all of us there is a need to be needed, a need to know that who we are, what we have to offer, is valued.

Because of Morgan’s social anxiety, it’s hard to get people to understand she is very capable of doing a good job. We’ve had to beg for her to be given any opportunity. I wish I could say that’s unusual, but for many young adults with disabilities, real employment opportunities are rare. Just having that hour at the sandwich shop, a couple of times a week, was very meaningful for both of us. That hour may seem so small to some people, but seeing her feel good about her “Busy Long Day” made it worth all the mountains we had to move to get there.

The sandwich shop never opened back up. But recently, we were able to get back to Meals on Wheels. Morgan helped Papaw in the past, and now she has been given her own route.  One morning a week, I drive and Morgan “trick or treats” folks with a warm meal. As she puts on her mask, and gets out of the car, I hear her say “I can do it. It’s Izzy.” When she comes back, there’s a high five and fist bump. “I did it!” 

       Meals on Wheels - “Trick or         Treat”

Until Next Time,

Know The Hope!

Tammy

“If possible, as far as it depends on you, live at peace with everyone.” Romans 12:18

Our friends at Autism Tennessee asked parents how we are explaining all of the chaos in the news to our children. I told them I break it down as simply as I can for our daughter’s developmental level.

Morgan has a lot of anxiety, so I always try to present things in a positive solution mode. We approach everything from a faith perspective, because it is the center of our peace. With Covid, she knows we are waiting for friends to get well so we can get together again. We pray for them. We wear our masks because we care about our friends. “Love your neighbor as yourself.” Matthew 22:39

As for the unspeakable events that unfolded on January 6th, I prayed to God to give me the appropriate words to say before I spoke to Morgan about it, because it left me feeling incredibly sad and empty.

The Bible tells us to love our neighbor, even if we don’t agree with them. Doing things out of anger and fear doesn’t get us anywhere. It’s not ok to harm others. If we really trust that God is in charge, then as far as possible, we need to try and get along with everyone. God will separate the good guys from the bad ones.

When Morgan created this piece of art above. I remember talking her through it. She’s always worried about making a mess, getting her fingers sticky, when she’s painting. I told her sometimes we have to make a mess to create something beautiful.

Democracy can be messy. Praying for our country, that we learn from our mistakes. Now that we know better, we can do better. May we become America The Beautiful again, One Nation Under God, Indivisible, With Liberty and Justice For ALL.

Until Next Time,

Know The Hope!

Tammy

Disclaimer: **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.

Morgan and I were noodling around, writing a song yesterday about some of the things she wants. Songwriting is a great tool for engaging Morgan in conversation, and having a little fun. There is a link below to let you hear the process.

January Time Song

We’ve had to get really creative while we wait to get back into our monthly routines, we’ve lost in 2020. We’ll get there, one day, one song, at a time. 

Until Next Time,

Know The Hope,

Morgan & Mom

Disclaimer: **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.

When 2020 began, I had already met with the Autism Tennessee staff and board of directors several times and felt really good about where we were headed. We recognized that our families were seeking more and more resources online and decided that we were going to meet them where they are. We invested in technology and created accounts to stream our education and adult programs. We had a great line-up of education topics and presenters, a handful of consulting projects moving forward to create more autism friendly venues in Middle Tennessee, and had moved our Teen & Adult Programming to Saturday mornings to make them more accessible. We added a web based phone system so that our HELPline staff could access our calls from home, which allowed staff more flexibility to maximize their work availability. We secured a web-video hosting site to house all of our new online education events to make them permanently available to our members. I spent the last quarter of 2019 uploading our DVD vault of educational videos from 2015-2018 so that our members could access those resources as well and rebuilt our website so that it had more functionality for our members to access information at their convenience. Our staff worked to vet our Community Partners and common referrals so that we were certain that the information we provide is high quality. 

On March 3rd, I awoke to the storms at my home and turned on the TV. It was apparent to me, based on where the newscasters were reporting from, that our building in East Nashville was going to be significantly impacted. As the sun came up, and the images poured in, it was clear that we would be cleaning up for weeks, if not months. Unfortunately, the impact was even worse than we could have imagined. By 6am, I knew we had no power at the building, everything in my office was destroyed, and we were going to have to find a way to communicate with our families. Two days after the tornado hit, we had landed at a "temporary office" generously provided by DIDD. Within a week of the tornado, our HELPline staff had created some very simple instructions about how to handle and create call records. The AutismTN staff and a couple board members got the HELPline back up and running at full capacity. We were forced to suspend all programming and focused on HELPline. Getting the families we serve the help they needed was our NUMBER ONE PRIORITY. We all worked from home most of the week and came to our temporary office for staff meetings. We were optimistic and brainstormed where we would host our in-person monthly events until our building was repaired. We were completely overwhelmed by our amazing Community Partners who generously were offering up their venues for us! We made a list of each option on the dry erase board in our temporary office with pros and cons of each option. I assume those notes remain on the whiteboard today as we have not been back to our temporary building since the pandemic struck in mid-March. 

When the world shut down due to the pandemic, AutismTN was oddly unimpacted. We had already pivoted everything to a virtual service delivery two weeks prior. We had our computers and printers at home, our Zoom account was up and running, we had our education video media delivery live on the website, and we had mastered the art of the Google Drive, Google Voice, and Slack for office communication. One could say that the silver lining of the tornados was that our service delivery continued uninterrupted due to the pandemic. 

Unfortunately, the calls for help on our HELPline were more desperate than ever. We had parents suddenly out of work or attempting to work from home with kids with autism in need of full-time supervision. Therapies were canceled for months until telehealth was approved in July. Many of our families were floundering, as was the stability of AutismTN. We had been forced to cancel our biggest fundraiser of the year and we would not be able to pay staff. Most staff members were furloughed and I cut my own pay significantly. HELPline was the only program that continued during this time. 

In May, after securing CARES stimulus funds, we circled the wagons and got back to work. We suspended our consulting projects as most venues, religious institutions, and schools were closed. We reinstated all other programs virtually and they have continued uninterrupted since that time. We have worked hard as a staff to create new Standard Operating Procedures to support how we are now delivering our programs. We have strengthened the quality and reliability of programs offered by AutismTN. I could not be more proud of our team and what we have accomplished. 

Thank you for allowing us to be a part of your journey with autism and Happy New Year!

Babs Tierno

“Let your eyes look forward; fix your gaze straight ahead.”
‭‭Proverbs‬ ‭4:25‬ ‭HCSB‬‬

I am a big fan of do-overs when they’re needed. They allow us to fix what we can, and move forward. 2020 has been filled with cancellations, disappointments, frustrations, insane political incorrectness, and overwhelming loss. As Morgan would say, “We’ve not doing that again.” Although I don’t know anyone who wants a do-over on this year, we have to admit, it has taught us some things about ourselves.

In this blog, I usually share a lot about the joy and blessings of autism. In the interest of fair reporting, I'm realizing it's equally important to share our struggles. We are learning we can live without some things we thought we couldn't. We’ve had some personal bests, and unfortunately some personal worsts this year. We have definitely felt our humanity.

2020 has tested us all. The disappointments just kept stacking up. Morgan had a major meltdown recently, because she was having to wait on something once again. We had to bring out a forgotten tool, one we haven’t used in quite a while, reminding me it's one of the best tools in our behavior box.

Social Stories, written in first person, have always been helpful for Morgan. I had to remind myself, when she’s really upset, she can’t hear anything we’re saying. She needs to SEE the story. One of the things Morgan says, when she's been upset, is "I was just trying to fix it". After reading this, she was able to calm down and take a breath, so we could “fix it” together.

Although I wrote this for Morgan, it’s as if God was writing it to me. I've been exhausted from waiting on some sanity to kick in from those who are supposed to be leading us. I've been sad and angry over those who seem to have no concern for the vulnerable. I may not have said unkind things out loud, but I’ve certainly screamed them inside my heart. As I look up toward heaven and take a breath, I remember God is in control. I remember to be more patient and kind with myself and everyone else. I can forgive others, as He has forgiven me. I can let go of the things I can't fix, knowing that God can. I can move forward, knowing we should know better now, knowing we should be able to do better together now. Here’s to hearts healing in 2021.

Until Next Time,

Know The Hope,

Tammy Vice

Disclaimer: **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.