Tag: trauma

The Incident

AC1 Comment

To start with, both of my kids have terrible teeth. So do I. Isn’t that the way it goes? To add to this, until recently, E has not let us anywhere near his mouth in terms of brushing. Other special needs parents can commiserate. Teeth are one of the last things on the long list of things to take care of with a child like E. I have taken E to the dentist for his 6 month check-ups to get him used to the idea of the dentist. He has responded well but hasn’t let her do much in the way of an actual checkup. One day, after E fell asleep in the car, I noticed his teeth. The ones he never lets me get a close look at. They were rotting through. The next day at school, his teacher called me to tell me that one of his molars had chipped. E is a grinder. Whenever he gets excited he grinds. The dentist and I had talked about needing to put E under to fix his teeth that I was sure were deteriorating, but we wanted to wait a bit longer until there was more obvious damage. I knew it was a thing we had to do most likely, it was just a matter of when.

We chose a day. I wasn’t too nervous about it. E has been under before. Two different times for minor procedures. Procedures that took under 30 minutes. This was going to be about two hours. The dentist wanted to x-ray, do a cleaning, seal his teeth that didn’t need fixing and just get a general idea of what needed to be done. She said that she could restore the front teeth but those fillings often don’t adhere as well and need to be fixed later. Wanting to avoid going under again I told her to just pull those. E has done a lot better with doctors lately and I wasn’t worried about the waiting time before the procedure as much as in past times. E did well leading up to the procedure. He was scared when we took him back to the OR, but he let them put the mask on, and fell asleep pretty quickly.

Often times I look back at situations in my life and I think of the person before the situation. The person who has no idea what is going to hit her. What I thought would be a very routine procedure, and it was in a sense, no complications, turned out to be a traumatic experience for the both of us. I remember waiting for him to wake up and thinking, the worst of it was over. He might be a little grumpy, but I would take him home and we could watch a movie and lounge for the rest of the day. Turns out I underestimated the situation quite a lot. A typical five-year-old, I could have prepped for the surgery. I would have been able to explain what would happen. He would understand that teeth fall out, and they grow back. I would have been able to explain why he was hooked up to wires and most importantly, I would have been able to adequately comfort him. That is what kills me the most with these situations. I feel helpless. I have no idea what is working for him. If I am helping him, if I am making the situation worse. I don’t know what he needs from me. I do my best anyway, trying to guess what he needs. It’s such a hard thing as a parent, to see your child in so much distress and not be able to do a thing.

They told me in the recovery room that he would start waking up slowly and may get a bit squirmy and grumpy. After 40 minutes of waiting, I asked the nurse when he would start to wake up. He said it could be up to an hour. After he left the room, E sat straight up. For 10 minutes he just sat there rather catatonic. I thought the worst was over. I thought I had lucked out and he was going to be fine. No grumpiness. However, right at the 10 minute mark, he seemed to realize what was happening. He started grabbing at the wires, he started screaming and trying to get away from everything and nothing. For his privacy, I’ll won’t go into the details of the behavior. It’s sufficient to say, he was very upset about everything. He was feeling funny about the anesthesia, his numb mouth, the blood, the cords, the new feeling in his mouth. It was a long 30 minutes of trying to calm him down and keep him from severely hurting himself. I almost asked if they could give him a sedative, but I thought that once we got out of there and he knew we were going home that he would be okay. In the past that has worked. This time he was too agitated, disconnected, and out of control to be able to realize what was going on. He wouldn’t sit in the wheelchair so they had to wheel both of us out with him on my lap flailing and screaming. A few years ago, I was very aware of E’s movements when he was in this kind of state. I anticipated his moves more and acted defensively to avoid getting hurt. It didn’t work all the time, I still had my share of split lips, black eyes, broken nose, etc. This time not as trained as I used to be I took my eyes off his head. We were about to leave the hospital, and I was keeping my eyes open for my sister who was driving us home. Right at that moment, he hit his head back at me full force straight toward my face. There was a huge crack and everyone around me stared in shock, not sure what to do. I told them I was fine, because I didn’t really have any other options at this moment. I just wanted to get E in the car as quick as I could. With the help of 3 people, we finally got him in. My sister dropped us off at home and the meltdown continued. I couldn’t take my eyes off of him for more than a second or he would try to harm himself. Out of all of his meltdowns, this was the worst. Adding to that, he is a lot stronger than he used to be. With my nose in so much pain, I had to sit there and try to hold him and keep him safe. I had no idea if this was making it worse or better for him. I just was trying to do anything I could to help him and keep him from harming himself. I had Eric come home from work early and help me, but his work is an hour away, so I still had to wait. When E calmed down enough to look in the mirror he was so upset. He kept asking for his teeth back on. I was heartbroken for him, not being able to explain in a way that he would understand what had happened to his teeth. I finally was able to take advil once Eric got home, and he took over for me. I shut myself in my room for the rest of the day. My nose was hugely swollen. It took me about 3 days until I felt I could parent again. His behavior currently is not as bad as it was that day, but he’s still had an increase in self harm and meltdowns. The third day after the surgery, he started to have a meltdown. I felt like I was up to the task again to help him. I was nervous about it, but I tried to comfort him and help him. I started showing him old photos on my phone and he started to calm. After a few minutes, he turned to me and said, Mommy big hug? I gave him a huge hug and he stayed that way for a full minute. I felt like maybe I was adequate as a mother after all.

He doesn’t understand the situation still. He still asks me to put his teeth back on daily and then tries to take my teeth off when I say later. I still have pain where he hit me. The black eye went away, the swelling has subsided some and I went to the doctor for an x-ray. The doctor confirmed a break but didn’t think that it needs to be reset. He thinks the crookedness is because of swelling. I guess we will see. If I’m still having problems in a few weeks, I will go to an ENT.

I’m not sure really the purpose of writing this is. Not for sympathy. That is usually why I avoid writing about certain things. I don’t want the pity. I know that I go through hard things and this was difficult, but I am overwhelmingly grateful for all of the blessings that I have. For my healthy children, for an amazing dentist, for amazing nurses that helped us through it. For family, for friends. Things could always be much worse than they are and I am grateful for my situation. Writing this is mostly cathartic. And a little bit about sharing my story. There are a lot of things that happen that I choose not to share. I share tidbits here and there, but a lot of the really hard stuff I don’t. My life is so much more than autism and I like to celebrate everything. When I do share, I like the humanity of sharing my stories and hearing other people’s. We live in a culture of everything being perfect for the internet. Everything is curated for social media. That’s not life. Life is real, full of good and bad. Hard and harder. Joy and happiness.

The Ramblings Of Pessimism.

AC3 Comments

It’s like there’s a time bomb always ticking in the background. The background of my thoughts, of my routine, of everything in my daily life. The closer it gets to E’s 4th birthday, the more panicked I feel. The more restricted my airways become. I don’t think I ever really really believed that he wouldn’t talk. I kept thinking, not my E, he will eventually. He’ll get that speech therapy and it’ll take off. But, here we are at almost 3.5. Still no speech. He is smart as a whip and communicates in so many different ways, but I feel like the day is winding down. I am in the 11th hour. That might be a slightly dramatic description. There are kids that talk after the 4 year mark, and I do still have time. But in this moment of my fears, it feels exactly the way described. I think it goes hand in hand with the stages of grief. You swing from acceptance, to denial, to bargaining, to depression and back around again.

It’s the not knowing that really kills you. It’s also the seesaw of optimism mixed with the “well, its a spectrum” lines you get from the doctors. They never will tell you just how severe your kid actually is. I spend my nights googling, searching other autism forums, just trying to find out what I am up against. What group of autism is my son actually in? I hate this spectrum stuff. The spectrum is too broad, and it slights everyone. You are given a blanket diagnosis, with over a million different outcomes, and you just have to wait to see where your child lies. If you ask, they give you vague, nonsensical answers about it, “Well everyone is just so different on the spectrum. Anything can happen.” No definite answers. Tell me then what is the purpose of this “spectrum diagnosis“? What good does it do me if I still have no idea the true prognosis for my son? And why is it an unspoken taboo to ask just where your child lies in the vastness of this spectrum diagnosis.

It’s as if you were to take your kid to the doctor because something is clearly not right. He is coughing, he has random fevers, he randomly throws up. You know something is wrong but you don’t exactly know what. You get to the doctors office and they confirm your worries.

“Well ma’am, you did the right thing by bringing him in. There is definitely something wrong with him.”

“What is it? What’s wrong with him?”

“It’s Childhood Illness.”

“Okay. What is Childhood Illness? Will it get better?”

“We are not sure what will happen with him and his Childhood Illness long term, or even short term. He could always have these symptoms, he could get rid of them, or he could end up having just half of them long term. It’s hard to say.”

“What should I do to help him?”

“There are 100 different things you can try. Some might work, some might not, and… maybe, its a possibility, that all of them will not do a thing.”

“Okay… well, is there one that would work better for his type of Childhood Illness? Could we get more specific?”

“Don’t get caught up in the labels, just accept your son and his Childhood Illness.”

“Can I talk to anyone else that has a child with Childhood Illness?”

“Oh definitely, there are tons of support groups. There are so many moms that have kids with this. That mom over there in the waiting room,” the doctor says pointing. “Her son has it too.”

“It kind of looks like her son actually has completely different symptoms than my child.”

“It’s still Childhood Illness.”

“But there is literally nothing the same at all between our two kids.”

“Well, that’s the way Childhood Illness goes. Read this book about it.”

“But, this book is about children who sneeze not cough and have chronic bloody noses. My son doesn’t have any of that.”

“Like, I said, it’s a spectrum. Just read it. I’ll see you and your son in six months to discuss how trying as many of those 100 things you can in that period goes. Try not to go bankrupt on the way.”

Outside of autism and other disabilities is this considered an effective plan of action? I feel like the doctors around me spend so much time trying to instill me with hope and optimism that they forget to fill me in on the realities. I know that nobody can answer the questions that I want to know about E. But just give me a ballpark. There is a big difference in my life long-term having a non-verbal moderately severe child with autism, and having a verbal child with moderate autism. I just want the facts. I am not alone in this. In the autism forums that I frequent, the pages are full of, “Tell me where my child is on the spectrum. Does your child, who is doing this and that, talk? What should I expect?”

Nothing from a medical provider can change E. They can’t change the future. But could they help me better prepare for it? In a situation where hope is a dangerous thing, what’s the harm in just giving the hard facts? If my hopes are low, I can only go up if he exceeds those expectations.

 

Coping.

AC1 Comment

Sometimes it totally catches me off guard that E has autism. I look at him asleep in his room and I see the pictures of him on the wall as an infant and it just hits me. The reality of it all. That my baby E has autism. It’s like a punch to the gut and I feel like I have had the wind knocked out of me. Especially days like today where he is really hard and the autism is more obvious. I look at that those old photos and with them are my expectations of what I thought he would be like and what I thought my life would be like. I expected him to be a typical little boy. He would go through the same stages and milestones as A. I see those pictures and it’s like they were another lifetime. It’s almost as if that boy still exists out there, and that mom still exists out there. And then I am here. People try to be optimistic with me. They say, he will be fine, he will do great. I hope for those things too, but what they don’t understand is that I am still dealing with the loss of what I thought he would be. I am still grieving my old life. To me in this moment, Autism is everything. I am grateful for what I have. I am grateful for the resources I have, but sometimes I am still just sad. And defeated. Sometimes it takes every ounce of energy to run after him again. Or to ignore the intense embarrassment I feel when he is shrieking and I am taking him out of the restaurant while everyone watches. Or feeling anxious as some stranger at a store comes over and tries to play with him and tries to be interactive. I pray that he just looks at them once so the moment will be over. Sometimes it feels like I have been dealt more than I can handle. For those days, there is writing and David Sedaris.