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”. 

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.

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.

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.

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.

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.

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.

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“… 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.

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.

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.

"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!