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  • Monday, June 29, 2020 9:25 AM | Anonymous member (Administrator)

    "Therefore, having overlooked the times of ignorance, God now commands all people everywhere to repent." - Act 17:30

    I made a phone call to a long time friend last week, one I haven't spoken with in quite a while. We were able to pick up our conversation as if there'd been no lapse in time or distance between us. Sheilah has known me and stood by me through some of my worst decisions. My early twenties were not my shiniest years.   Thankfully, we've both managed to stay alive long enough to appreciate God’s grace, and even laugh at how smart we thought we were.

    A Nod to Forever Friends


    Me and my Maids in Blue

    Marrying Rudy was one of my best decisions.Needing a little grace for these hairdos 

    (Paragraph disclaimer: Age does not necessarily equal wisdom. Time just offers us more opportunities to learn.)

    At 62, I look back at my 20 year old self and say, “Who Was That and What Were They Thinking?!” God had so much patience with me, often overlooking my immaturity and lack of understanding then. He expects better from all of us when we know better.

    Knowing this, who am I to hold back forgiveness to others when God has forgiven me so much? Whenever I forget my own humanity and reach for a gavel, God is quick to hand me a mirror. When I'm tempted to look at someone and say "Well I'd Never...!" He reminds me that I actually did, more than once. Since God clearly doesn’t need my skills in the courtroom, what do I personally have to offer that would actually be helpful?

    Ah, Yes! God has given me more than my share of grace. I can always afford to reach in my pocket and pass a little on to the next guy. To my dear friend, Sheilah, Thank you for jogging those memories. "To whom much has been given, much is required." Luke 12:48

    Know the Hope,


    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.

  • Monday, May 04, 2020 12:39 PM | Anonymous member (Administrator)
    "But quite the contrary, the parts of the body that seem to be weaker are [absolutely] necessary; and those parts of the body which we consider less honorable, these we treat with great honor;... And if one member suffers, all the parts share the suffering; if one member is honored, all rejoice with it." 1 Corinthians 12:22, 23 and 26  Amp. Bible 


    When Morgan lost her ability to communicate at age 2, and was diagnosed with autism, I knew she was vulnerable.  What I didn't know was the strength and purpose she would help me find in my life, or all the lives she would impact for the better.

    We've heard a lot about essential workers during the time of the pandemic.  I understand the need for those who provide vital services to continue working.  It has also been equally important for those of us who aren't performing vital services to do the essential work of staying at home in order to avoid causing unnecessary exposure.  We all have a responsibility to do our part.

    As we move to re-open things, I've heard reports of some who believe we should push forward and let the survival of the fittest kick in, which saddens and sickens me.  How does one go about valuing or devaluing a life?  Thankfully, in God's economy, we are all essential.  He created each one of us on purpose, for a purpose.

    My dad is 81.  He provides Meals on Wheels to folks in our area.  Our daughter, Morgan, helps him out at times.  Here's a recent news story on the essential job he's doing.  Homebound Meals Video

    2020-04-22 (2)

     

    We haven't been given a spirit of fear, but one of power, and of love and sound judgement and personal discipline. (2 Timothy 1:7)

    I believe we should have the ability, the responsibility, to move forward lovingly, bringing along the lessons we've been given in humanity during this time.

    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.

  • Monday, February 24, 2020 9:25 AM | Anonymous member (Administrator)

    “And I set my heart to know wisdom and to know madness and folly. I perceived that this also is grasping for the wind.” Solomon  Eccl. 1:17 NKJV

    You would think, by this point in my life, I would have learned everything God could possibly have to teach me. However, I am now assured He will forever be tweaking things.

    I ended last year and started this one with a very strong sense that God is telling me to SLOW DOWN.  Maybe it’s because my multitasking tools are not what they used to be.   Since applying this lesson, I’m enjoying meals more, realizing I ate.  I’m enjoying conversations more, taking in what others are saying.  I’m not as afraid of missing out on things.  I’m just praying God has me where He wants me. It’s giving me the peace I need to make this stretch of the race.
    I do need to throw in a disclaimer to anyone who thinks I may have it more together than I do.  I DON’T.  God DOES.  And He has an excellent sense of humor.  Just when I think I am acing things there is sure to be a twinge or a goose in the ribs coming.
    For example: A few weeks back, I was rhythmically going through my morning.  I was so proud (first mistake) of how well I was doing, getting things done, now that I had "mastered" this art of completing “one thing at a time”.  Not slowly, BUT SUDDENLY, I heard a loud hissing sound from the bathroom.  I opened the sink cabinet doors to reveal a fountain of water spraying in multiple directions.  I had THREE thoughts, All. At. Once. OH CRAP! SHUT OFF VALVE! CALL DAD!!! The rest is a wet blur, except to say I learned there will be times when we and our smart selves are just not enough to handle everything that needs to be handled.

    Papaw under the sink

    Kudos to Papaw and his skills!

    A God wink, Morgan emerged from her bedroom as I was mopping up, announced that things were a mess, then landed comfortably in her recliner to wait for me to get my act together. 

    Need is one of the best teachers of humility.  Forever 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.

  • Wednesday, January 15, 2020 12:23 PM | Anonymous member (Administrator)


    Patient (noun) an individual awaiting or under medical care and treatment

    Patient (adjective) bearing pains or trials calmly, or without complaint - Merriam-Webster 

    Over the holidays, my older daughter had an emergency appendectomy. Since the appendix was ruptured, she earned an extended stay in the “hospital hotel”. With the help of my parents watching Morgan, I was able to be there to assist Allison until she was ready to go home.


    Following surgery, Allison spent her recovery time on a floor that was dedicated to post op patients. Soon after surgery, they had her up and walking the halls. Her husband and I took turns making laps with her. From the patients’ view, the route was two long hallways that formed the shape of a double “L”, as in H. E. …. Well you get it. Seeing the small parade of gowned patients walking the halls with loved ones, some pushing IV poles, reminded me of the Jack Nicholson Movie, “Something’s Gotta Give”. 

    Hospital gown 2
    It may sound strange to say but caring for Allison at the hospital was a little break for me. I am always caring for my younger daughter, assisting with her needs 24/7, because she cannot be left at home alone. This was not only a change of venue. Strolling through the long halls, when Allison was resting, gave me a chance to decompress. I also met some very sweet folks, gained a new respect for post op patients, AND the nurses and staff who serve them.
    As I passed by each room, I heard blips of conversations; Some thankful, some not so thankful, some fearful, and some incredibly obnoxious. I heard nurses respond calmly, understanding how pain and uncertainty can wear on some folks more than others. It gave me a fresh perspective of what a blessing it is to be in my position. I’ve spoken a lot about what it’s like to be a caregiver, but I think it requires a lot more patience to be the one who’s dependent on others for their care. The waiting, the vulnerability, and for those who are unable to communicate their basic needs, the frustration of being constantly misunderstood. It was a reminder to me of why it’s so important to be a patient and compassionate caregiver.

    Patient3
    On a final note, it was a treat to share some slowed down time with my older daughter, and her husband. I enjoyed the heart to heart talks that don’t usually happen in the haste of the holidays. Allison and I closed out the old year and rang in the new, fading in and out of conversation, between the nurse’s visits and naps. I woke up at 5 minutes till midnight, looked over and saw her sleeping peacefully. I counted down to the ball drop and counted up the blessings of the last few days, then fell back to sleep.

    PAtient4

    Here's to a very Happy and Healthy 2020 to you all!

    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.

  • Monday, December 09, 2019 8:07 AM | Anonymous member (Administrator)

    A few years ago, my family would travel to the beach for the holidays. The drive was a long seven hours and I still remember the feeling of fear I’d get every time we’d leave. I was scared that Joe, my brother with autism, would “explode” as we call it. But seven hours later, we were all safe at the beach. However, the trip was never all sunshine and rainbows. It was always a power struggle to get Joe out of the condo. All he wanted to do was play video games or practice card tricks. Once we finally got Joe to leave his room, he would spiral and spiral into worrying about little things that were so obscure that my parents would have to calm him down every time. However, after being out, he always enjoyed his time, and he realized he was stressing for no reason.

    One distinct memory I have is when my dad was getting food for the week and it was just my mom, Joe and me at the condo. Joe was locked in his room playing video games and We started hearing this loud banging on the wall. I knew what was happening. After a few loud noises my mom asked Joe what was wrong, and he started to freak out because he couldn’t pass a level on his newest game. I stayed on the couch terrified of what would happen. He started hitting the wall harder and screaming at his game. My dad came back and was able to calm him down, but I was nervous the rest of the day.

    Now my brother is twenty and is a sophomore in college. He was able to leave and be successful, which is the main goal of my mother. He came home over Thanksgiving break and he talked about how much he’s learning in his Calculus III class (and slightly bragging about how smart he sounds now.) I told him I was going to write about my experience with him during the holidays. As a family we all talked about our past memories and laughed. The four of us were sitting there and I realized how adjusted he has become. He has his group of friends at college and he has a job there. If you asked me if I thought he would be this successful away from our parents, I would have said no. However, it is like he is a whole new person with how he has matured and grown.


    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.


  • Thursday, December 05, 2019 9:34 AM | Anonymous member (Administrator)

    Whitney Holifield is the Ambassador of Wilson County for Autism Tennessee. She is the proud mother of two little boys, Jacob and Jonah Lee Holifield, who both have Autism. She also is the special education grade level representative for Stoner Creek Elementary PTO and a Professional Corporate Trainer for DXC Technology.

    Whitney began her journey with Autism Tennessee after her oldest son Jacob was diagnosed with Autism in 2014. She was searching for resources and education to help make her son’s life the best life possible. She found the hope she was seeking with Autism Tennessee.

    Whitney began volunteering as the County Contact for Davidson County in 2014 and found her strength in listening to and serving other families whose children had also been diagnosed. In 2018 Whitney’s youngest son, Jonah Lee, was also diagnosed with Autism and has recently also been diagnosed sCAP (Childhood Apraxia of Speech).

    Whitney has continued to press forward in serving her community. Whitney’s family moved to Mt Juliet TN in 2018 and she took on the role of Ambassador of Wilson County for Autism Tennessee. She has been honored to serve the Autism Community in Wilson County by working with families who have reached out to her with needs and meeting those needs privately.

    Whitney also loves waving the Autism banner loud and proud in her community by providing opportunities for celebration!! Whitney has ledthe charge for Autism Awareness Day at her son’s schools for the last six year by participating in school wide “blue out” days and sharing a social story she wrote called, “Pieces of Friendship : A Letter to My Friends”, that helps educate children on how wonderful it can be to be friends with someone with Autism.

    She has also participated in the Mt Juliet Christmas Parade last year by building a sensory friendly float, with the help of her husband Jared, so that children with Autism could have the experience of riding in the parade! This year she will be partnering with the Mt Juliet Fire Department for the parade and will be giving children the opportunity to meet Santa one on one and help escort him on the big day.Whitney also participates in special needs day at the Wilson County Fair representing Autism Tennessee by speaking personally to each family that enters the gates on that wonderful day.

    It is Whitney’s mission in life to create a world for her sons that supports, understands, and celebrates people with Autism. She is abundantly grateful for the opportunity to do this with Autism Tennessee.

    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.


  • Tuesday, December 03, 2019 10:12 AM | Anonymous member (Administrator)

    If you follow us on social media, you probably already know that Autism TN is a staff of seven diverse individuals who are passionate about autism. Some of us are on the autism spectrum and have found a workplace that gets us and wants to maximize independence for adults on the autism spectrum. Four of us are parents of children on the autism spectrum who have experienced a range of heartaches and triumphs over the years on our journey with autism and have relied on the community Autism TN provides. One is a clinical professional who found her passion in the area of autism.

    When you get to know the team at Autism TN, you will find that we are Southerners, Yankees, Immigrants, Floridians (because Florida is NOT the south), East Kentuckians (because that’s too Appalachian to be Southern), and one confused Midwesterner.  We love soccer, golf, football, boating, traveling, hiking, meditating, exercising, coffee, wine, tea, and diet coke. We believe in people, community, God, prayer, tradition, Folk Medicine, Traditional Medicine, Western Medicine, Holistic Medicine and even superstition. We enjoy laughing, telling stories, watching movies, playing games, reading, dancing, eating good food, and loving on our pets.

    Sometimes our challenges are overwhelming, our hearts are breaking, and we are utterly exhausted. We are baffled by setbacks, frustrated by lack of resources, angry with injustice, and appalled by the vitriol around us. We feel small, powerless, and futile. We struggle to find the silver linings in incremental progress when we can see how much more needs to be done. We have conversations about the lack of compassion and collaboration even within the autism community. Some days are just hard.

    We are just like you. We want more, better, and different for our loved ones on the autism spectrum. We want hope, independence, and a joyful life for people on the autism spectrum. We have the audacity to demand awareness, acceptance, and integration for those with an autism spectrum disorder. We hope that our audacity inspires yours.

    We know autism isn’t one thing. It isn’t a simply explained and understood concept. We know that autism is intimidating to those who are unfamiliar with it. Before we understood, we were intimidated too. When people talk to us, they assume that because we work at Autism TN, we are autism experts but that’s an amusing mistake. We aren’t even experts at our own journey with autism. We take each day as it comes, give it our best effort and then let it go. For better or worse, we trust that we did the best we could with the resources we had in that moment. Mistakes are made and we learn from them. No one uses the compassionate shoulder of Autism TN’s HelpLine more than our own staff! We are here for us, and we are here for you.

    When you invest in Autism TN, you support programming that is authentic and local to Middle Tennessee. When you give to Autism TN, you give 42,000+ individuals on the autism spectrum access to a community of hope. Autism TN gives Middle Tennessee one door, one simple way to access any resource you could imagine. When you give to Autism TN, you promise Middle Tennessee that hope is just a phone call away.

    Thanks for following Autism TN and supporting our work! 
    If you'd like to support us, you may donate using this link. 



  • Tuesday, October 22, 2019 9:54 AM | Anonymous member (Administrator)

    “… I will never leave you or forsake you.”  Deuteronomy 31:8, Joshua 1:5, Hebrews 13:5, Deuteronomy 31:6

    When children with disabilities become young adults with disabilities, there is a service cliff.  Families have to piece and patch together everything to keep young adults active in the community.  One of my biggest fears when Morgan left high school, was her falling off of everyone’s map, being forgotten.  Thankfully we live in an area where the disability community itself is very active.  There are always opportunities to socialize in organized activities.   You might say there’s plenty of water to bring the horse too, but my horse doesn’t always want to drink.

    Morgan’s autism brings with it a lot of social anxiety.  While she is very comfortable at home, where she is able to communicate her needs, hang out in her jammies and play on her iPad Way Too Much, that only adds to the iceberg of isolation.  It’s up to me to get her out the door and into social activities.  She does “want to see friends”.  She just doesn’t always know how to “be with friends”.  As much as I try to nudge her into the group, if she’s not able to relax and engage, it’s not going to happen.  This not only isolates her.  It isolates me.

    2019-10-22 (2)

    All caregivers deal with isolation to some extent.  It just goes with the territory.  Add to that caring for someone who, due to their disability, is unable to give you that pat on the back for giving it your all.  It can be extremely draining at times.  It can make you question if you’re doing it good enough, if it’s possible to do anything good enough.

    Recently, I was speaking to another caregiver who was feeling very unappreciated, very alone in their circumstances.  The advice I heard come out of my mouth was, “Do everything you do, as unto the Lord.” Col 3:23.  Until that moment, in my own exhaustion, I realized I had forgotten my own advice.

    2019-10-21

    Click Here for a Video Message for Caregivers

    I have to remind myself, as I keep reaching out for Morgan’s sake and mine, I also have to Keep Reaching Up, to keep from giving up.  I don’t even know how to explain it, but there is a very solid peace I find, knowing that God has promised to never leave me or forsake me. I don’t have to fear for Morgan, or myself, being forgotten. God still sees us, even when no one else is looking.

    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.

  • Wednesday, September 25, 2019 8:44 AM | Anonymous member (Administrator)


    "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.

  • Wednesday, September 18, 2019 5:09 PM | Anonymous member (Administrator)

    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.

    • 5-7 Aspirin Crushed
    • 1/2 C Warm Water
    • 2 Good Squeezes of Shampoo
    • 4 TBS of Witch Hazel
    • Mix together and put on damp hair. Let sit for 10-15 minutes.
    • Wash like normal.
    • Use a fine tooth comb and brush through damp hair.
    • Repeat if necessary.

    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!!


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