Everett has had a rough few months. I have held back talking about his struggles, because I really haven’t had my finger on exactly what has been going on. We are very much still in the midst of a hard season but I feel like we have some new things in place to help manage.
The past year has been one of the most intense for me personally, and it was on the heels of 2019 and 2020 which brought its own versions of really hard challenges. I’ve talked openly about most of the challenges we have faced. For privacy sake, there are some I’ve yet to share but I will when the time is right. Everett feeds off of my energy and I have to be a lighthouse of calm energy for him to feel safe. That is where our struggles are stemming from right now. I have not had the emotional stamina that he is used to me having available for him.
If you have been with us on this journey for long, you know Everett has physically changed a tremendous amount in the past year. We are in the throes of hormone surges that we do not have the language to explain to him. I decided long before this began to happen that I would do everything in my power to help him through puberty in a way that would not instill shame about what his body is going through. It is as simple as biology that we have no control over. Everett is now 5’7” and that makes him 3” taller than me. He won’t stop growing anytime soon and I won’t be surprised if he is the tallest member of our family.
Everett’s anxiety has been the driving force in our life over the last few months with very specific triggers that we are working through. The root of his anxiety is someone dying (more specifically me). Brett’s death has left this undercurrent in our family that will never go away. We are three years into it and Everett’s grief is bigger and more prevalent than it has ever been. When my Dad’s health started to decline during the summer, I began taking time inside of our normal routine to spend time with him and help with his care. Everett’s routine is one of the ways that he feels safe and changes in it trigger his anxiety. There were a couple of times that I dropped Everett off in Tupelo at the Autism Center and had to have someone else bring him home because of emergencies with my Dad. By the end of October, he stopped wanting to go there for his weekly sessions. In the midst of my Dad’s hospitalizations, Covid shutdowns, and changes in routines because of the holidays, I chose to stop taking him until after the first of the year. During that time, Everett began making comments about his Dad, such as “my Daddy lives at the Iuka hospital”. One day we ran into one of Brett’s best friends, Dale, and the first thing Everett said was “How’s Daddy doing?” I was telling my sister about some of these situations and she said when you talk about our Dad you use the term “Daddy” and not “Pop”. I bet he thinks you are talking about Brett. It hit me like a ton of bricks. Since July, I’ve had so many phone calls where I am updating people or talking to him and Everett thought I was talking about his Dad. After that realization, I tried to only refer to my Dad as Pop. I didn’t always succeed.
I had talked with Everett throughout the process of my Dad’s prolonged illness while he was sick, in the hospital, and that he could die. We visited one rare weekend when Daddy wasn’t in the hospital and were able to spend some very sweet time where Everett, multiple times, spontaneously told Pop that he loved him and he liked his beard.
My Dad passed away on January 2nd in Athens, Alabama which is about 250 miles from where he lived and I had Cutshall funeral home (Dianne-Brett’s mother’s) pick him up. When Brett died, I was given specific instructions on how to handle Everett’s exposure to the funeral. I absolutely think how we handled it was appropriate at the time, but left so many unanswered questions for Everett. Cutshall’s is a place Everett has been his entire life. The bus drops him off there and everyone that works there loves Everett’s visits. I decided that I would let Everett see my Dad’s body at Cutshall’s to help him understand more about what happens when someone dies. Dianne and I were with him and we stayed for a very short time. Little did I know what a huge affect that would have on him. It gave him the piece of information for him to better understand death and it’s finality. It took a couple of weeks but grief surrounding Brett’s death hit like a freight train. Everett has a very hard time processing sadness. He comes in with anger and rage before it releases to crying. He has very aggressive stims that are loud and include physical jumping and jerking. They are moving into the category of tics. They happen almost daily, usually at night, but sometimes show up during the day when he gets overwhelmed. We started on the anxiety medication, Buspar, last May and that has been helpful with dealing with this as it has come up.
We started going back to the autism center on a condensed session that includes grief counseling and I am present the entire time to help ease his anxiety. We have been going to the autism center for over a decade. I don’t know how long we will continue but I don’t want to end on Everett having anxiety about it that is rooted in his fear that something bad is going to happen to me. We went from him melting down the entire trip to Tupelo to it only happening for a few minutes when we first start the trip. I questioned whether including this video that I took two days ago but I’ve chosen to share because I don’t think that you can get a clear picture of what he is going through without it. And if I’m willing to share the heartwarming and funny things but edit the realities of our challenges, it’s not a truthful picture. I will sometimes turn on the video when Everett is melting down so he can see himself as it’s happening and it actually is a tool I use to defuse them. It doesn’t always work but this time it did. I also want to say that I don’t want this to convey that I handle these situations perfectly. I have lost it on him numerous times which just makes everything worse. It is to my advantage if I can stay calm but I don’t always do that. I’m posting this with a warning that it starts off extremely loud and it is hard to watch so don’t feel like you have to and I wouldn’t recommend it for kids.
Everett has also developed extreme tendencies to want to control me. There have been multiple things over the past couple of years but the most prevalent is my hair. He wants my hair behind my ears and shoulders all of the time. He says “Mommy, hair back” dozens of times daily. He brings me ponytail holders the moment we walk in the house and tells me “here’s you pony tail so hair high”. He does what is called “scripting” where he wants the two of us to banter back and forth memorized phrasing over and over again. All day. Everyday. It’s a way for him to manage his anxiety but it is extremely hard and wearing on me. I have tools to diffuse and distract it but they frustrate Everett.
Everything we are going through is a season. Everyday isn’t terrible and most days are good. Everett is strong willed, funny, charming, and I have no doubt that we will come out of this stronger. We have the BEST support system and so many people who love and care for us. To family, friends, teachers, therapists, school administrators, co-workers, and a community that showers us with endless amounts of love and support. Thank you…