27 Sep We Tried Normal – 2e Family Stories: Chapter 2
Chapter 2: If Only They Knew What They Don’t Know
By Dr. Melanie Johnson Hayes
Cheese Sandwich Meltdown
When Dylan was five, he had many food aversions, had difficulty eating anywhere but home, and struggled to be functional when he was in a crowded place. Tom and I had worked for weeks to get him to be able to go into a restaurant. Each day we tried to acclimate him to the idea of eating in a restaurant. The first time, we drove by the restaurant. Then we stopped and stood in front of it. We looked through the window. We walked inside and right back out. We stood inside for several minutes. We went in, ordered food to go and took it home. Then, we ordered food to go and ate it sitting outside the restaurant. Finally, after several weeks of this, we went into the restaurant, sat down, and ordered food.
This was during Dylan’s grilled cheese sandwich phase: the only food he would eat at the time. He also had a particular problem with having his sandwich cut in half. He would not eat his sandwich if it were halved. So, I ordered a grilled cheese sandwich, and asked, and verified, that his sandwich would not be sliced. When the sandwich arrived, cut in half, Dylan started cry and scream, “It’s not supposed to be cut in half…it’s not supposed to be cut in half…”
The server looked at us with dismay. We quickly tried to sooth Dylan and get him to be quiet. The more I tried to explain that we could get another whole sandwich, the more upset he became. Finally, Tom tried to drag him outside. He was big for his age, and wiry, so a struggle ensued, which was accompanied by continued screaming. As we were fighting to usher both children out the door, I got that look and a few eye rolls.
Once outside, I eventually got him calmed down with a guarantee that I would make him a whole grilled cheese sandwich at home. Tom stayed with the twins while I went back inside to pay for our food. I approached the server and asked if she could please just wrap it to go. She agreed, but warned, “You know, the more you give in to that type of behavior, the worse it will become. You should do yourself a favor and just not put up with it.”
I wanted to slap the smug look off her face. I felt a real desire to grab her and shake her. I wanted to shout, “Do you have any idea how many weeks of boring, painstaking, humiliating work you just undid?!” I wished I could have somehow made her understand how hard it had been to make it this far. If only she could have comprehended what it took to get him to come in, sit down, and be ready to eat in a restaurant. I wanted to ask her just what she thought I should do? What exactly did “just not putting up with it” entail?
But that is the problem with Dylan’s behavior: it looks like he is being a brat. There aren’t any obvious markers to let someone know that he has a disability. His mental health issues sometimes make the simplest activities a major undertaking. Parents of neurotypical children may not have the perspective to understand that the everyday activities they do with their children, are not that simple for parents of 2e children. We never take for granted that our children will behave “normally” in any given situation. Most of our outings are done in a state of high anxiety, for both our children and ourselves. Our children are anxious because their disabilities make the outing fraught with perceived difficulty and danger. We are anxious because we know a meltdown can happen at any moment.
Failure Is Not An Option
Meltdowns aren’t the only painful parenting experience. It is equally gut wrenching to watch your child’s sense of self slowly erode. When Morgan started kindergarten she was very worried about not being able to read and write. The night before her first day of school, we overheard her little five-year-old voice tremulously reciting how to spell her name. Then, there was a long pause, and suddenly she gasped, “What if is there is another Morgan!”
She is a perfectionist with high anxiety about failure. I think that is what ruined reading for her at such a young age. Her twin brother learned to read at 18 months of age; by the time they were three he could read Magic School Bus books flawlessly and recall every detail. Since she was just starting to sound out words, she was very frustrated by his seemingly effortless ability to read. Just before her sixth birthday, she and her Dad were online ordering unusual plastic animals for her collection and she wanted him to find her an okapi. When her Dad told her he didn’t know how to spell “okapi,” she sniped sarcastically, “Why don’t you ask Mr. Smarty-pants?” She refused to let her brother help her sound out words and wouldn’t practice reading if he was anywhere around. She didn’t want to hear my little encouraging speeches about how everyone has different abilities and developmental stages. She was just plain mad that he could read better.
Things got worse when they started kindergarten. They were in the same class and everyone commented on her brother’s reading ability. She didn’t compare herself to other children who were at her level of learning; she compared herself to those who could read better. As the year progressed, her stress level escalated and she began to refuse to do any work at school. Her teacher had her stay in at recess and tried to help by working with her one-on-one. Since Morgan was a very social child, this was more like punishment than support.
Her anxiety and perfectionism began to cripple her ability to produce any work in the classroom. She spent an inordinate amount of time worrying that she was not doing things right, that she would fall behind, that her teacher wouldn’t think she was smart, and that she wouldn’t have any friends. All these stressors began to take their toll on her five-year-old psyche.
I tried everything I could to ease her worry. I worked with her to help her feel more confident in her abilities. I tried to build her self-confidence. We did extra work at home to give her a chance to practice without pressure. I made a deal with her teacher that we would bring home every worksheet she didn’t finish each day so it wasn’t piling up and adding to her anxiety. Once we got home, we selected one or two things to practice, such as story writing or math problems, and threw the rest away. I focused on the things she could do so well, like vivid storytelling, intricate art creations, creative problem solving, and incredible vocabulary range, but nothing seemed to help; she couldn’t see past the failed work.
The Queen Bee’s Sting
She was struggling socially, too. The kindergarten queen bee often excluded Morgan from activities and the other girls followed her lead. One day when I picked up Morgan, she exclaimed that she didn’t want to be in school anymore because she didn’t really belong there. When I probed for reasons why she felt she didn’t belong, I found out that she was targeted as an outsider because she didn’t live in the same town as the school.
We lived 30 minutes away in a less affluent community. My children were enrolled at this highly sought-out school because I was a teacher there. The queen bee used our address as a tool for rejection. On this day, Morgan had been playing house with another girl whose speech and movements were impaired, due to a brain tumor. The popular girls told Morgan and her playmate that this house was only for the children who lived in the neighborhood, and promptly evicted them.
When Morgan began to cry, the teacher came over to see what was wrong, and the evictor told the teacher that Morgan was refusing to wait her turn. The teacher, who was a kind and competent teacher, believed this consummate lie and encouraged Morgan and her friend to come and do another activity. Both girls were so intimidated that they never told the teacher what actually happened.
Sadly, this was not an isolated incident. The queen bee regularly pushed her out and took over many of Morgan’s activities, while skillfully making it look like Morgan was the problem. I talked with her teacher, who began to watch more closely. She often interceded on Morgan’s behalf, but she couldn’t follow her around all day. So, the bullying continued, in a stealthier way. The queen bee broke all Morgan’s crayons in half. She hid her scissors. She glued the pages of her workbook shut. She hid her favorite toys. She told the other children not to play with Morgan, and they followed her lead. The only child who didn’t exclude her was the girl recovering from her brain tumor.
Because they were both outcasts, they regularly played together. The queen bee and her pack labeled them as “retards.” She began to see herself as impaired and refused to believe any conversations I had with her about how smart she was. She simply could not see herself as a gifted person. In her own mind, she was defined by her disability. Also, she was often lonely. Her friend missed a great deal of school because of her health issues, so Morgan was regularly the odd girl out.
Then the queen bee sniffed out her academic weakness and began to taunt her and tell her she was stupid because she couldn’t read. This child – whose imagination is rich and active, who tells stories with amazing depth and clarity, and whose vocabulary is off the charts – began to hate herself.
She cried on the way to school, she called herself names, she disengaged from learning. The coup de grace was when the queen bee had two of her minions hold Morgan down while she pulled off her glasses and stomped on them. When I called the queen bee’s mother to talk about it, she told me Morgan must have misunderstood because her daughter was not a bully.
I watched five years of love and encouragement, and efforts to build my child’s self-esteem, just wash away. She became quieter, more easily upset, less willing to engage in creative endeavors. She began to compare herself to the more affluent children at her school. She asked why our car was so old? Why didn’t we have a bigger house? Why didn’t we live near the school?
Then she began to criticize her brother. Why was he so weird? Why did she have to go to school with him? Why didn’t we have a normal family? I watched the lightness and joy evaporate from her personality. The combined pressure and judgment from teachers and fellow students eroded her confidence and character. It was a death of a thousand cuts.
Do No Harm
School wasn’t the only place our family struggled to acclimate and function. Medical treatments with Dylan were nightmarish. He could not tolerate the physical intimacy and intensity of doctor and dentist visits. Coupled with fear about the potential for pain, his disabilities made even the most benign checkup difficult.
Consequently, when our dentist proclaimed that our nine-year-old son had a tooth that needed to be extracted, I had a moment of pure dread. It had cracked from nightly anxiety-induced teeth grinding. The new tooth was ready to come in, but the cracked one wasn’t loose enough to come out on its own, yet. She recommended we make an appointment to have it extracted. Dylan refused to have it pulled and told the dentist he would pull it himself. She compromised and proposed he could try wiggling it every night and see what happened; but her parting words to me were, “Don’t let it go too long. If it abscesses, it could get ugly.”
On the way home, I told him that the dentist was concerned that the tooth could abscess if it didn’t come out pretty soon. I casually suggested that we should make an appointment and get the dentist to pull his tooth. Armed with our dentist’s suggestion that this could be a do-it-yourself project, he replied, “No Mom, I’m not doing that, I’ll pull my own tooth out.” I started to work up my arguments but, in truth, I didn’t want to go through an extraction either. So he wiggled and I waited.
In the vain hope that he would actually pull it off, I let it go too long. Two months later, while brushing his teeth I discovered the dreaded abscess. Filled with guilt and worry, I dug out the referral to the oral surgeon. He agreed to see us first thing the next morning for an emergency extraction. I spent that evening trying to prepare Dylan for the visit. I explained what they would need to do, and that it would be over pretty quickly. On-line, we researched about abscesses and tooth extractions. I tried to reassure him the best I could. He was nervous, but seemed to understand the necessity. He was willing to get it done.
When we arrived the next morning, I pulled the doctor aside and gave him a quick run-down of Dylan’s issues. The doctor reassured me that he had lots of experience with kids like our son. “Don’t worry, everything will be just fine.”
I had my reservations, but I was willing to give him the benefit of the doubt. The doctor explained everything they needed to do. He was kind and reassuring. He told Dylan that the extraction would only take a few minutes and wouldn’t hurt because the nerve would be deadened. They asked me to go to the waiting room, I told Dylan I would be right outside and the nurse would come and get me if he needed me.
About a minute later, the nurse rushed out to grab me. I hurried into the exam room to find Dylan wild-eyed with panic, a male nurse holding his hands, and the doctor with a syringe hidden behind his back. When he saw me, Dylan tore his hands loose, ripped the cotton packing from his mouth, and jumped out of the chair. “I don’t want a shot!” he shouted. I hugged him and tried to calm him down. I reassured him that the shot is just a quick pinch and it would deaden the nerve so it wouldn’t hurt when they pulled the tooth. I tried to get him to sit back in the chair. I promised I would hold his hand and stay with him. He wasn’t having any of it. I could tell the doctor was getting impatient.
Finally, the doctor asked me to step outside. He told me that he had other patients waiting and wouldn’t have time to do anything more that day. He wanted to put Dylan on antibiotics for the weekend and then reschedule a Monday appointment. His plan was to give Dylan a sedative he could drink, and once he was semi-conscious they would give him the shot and pull the tooth. I asked the doctor to tell me everything they would do, step-by-step, so I could prepare Dylan and give him time to process it all.
On the way home, I related everything the doctor had told me. I reassured him how easy Monday would be. He would come in, drink some medicine, get sleepy, and when he woke up, it would all be over. But he just kept repeating that he was scared and he wasn’t ready.
I’m ashamed to say that I scolded him. I was frustrated that we weren’t able to just get it taken care of that morning and afraid of what the abscess might do. I was worried about the extra expense of another visit and prescription. I told him that he was old enough to take responsibility for his health and that sometimes we have to do scary things to make sure we stay healthy.
Dylan started to cry and promised he would cooperate on Monday. He revealed that he hadn’t been able to do it that morning because everything was unfamiliar and happened too fast. Then I felt even worse. I had let my own fears and frustrations get us into a situation that was doomed from the start. I added to the problem by not following my instincts and staying with him.
Finally, Monday morning arrived. Despite the early wake up, and not having food or drink for 8 hours, he seemed remarkably calm. My stomach was in knots and my head was pounding, but I hid it well as we drove to the doctor’s office. We had a nice discussion with the receptionist about the merits of various chess moves and then headed back to the exam room. Dylan seemed ready to go. My blood pressure even started to decline.
Then the doctor walked in with a syringe.
He turned to me, “You know, I have been thinking about this all morning and I really feel he would do better with a shot of ketamine.”
Dylan jumped out of the chair, “I thought I was going to drink something to make me sleepy,” he shouted, panic rising.
I stepped toward him and cautioned, “We have to do this, your tooth is abscessed and it can be really dangerous if we don’t get the infection cleared up!”
Too late for reason, he bolted for the door. I grabbed him and tried to pull him back into the room. By now he was wild-eyed and struggling like a trapped animal. His adrenaline was giving him super kid strength. No amount of calming or comfort was going to help.
Two nurses, one a very large man, held down my wild fighting boy while the doctor quickly administered the shot. As the medication began to take hold, his fighting slowed and he began to droop.
I stroked his arm and fought back my rising anger, “I’m sorry we had to hold you down, but you have to get this done.” He looked at me through teary eyes, fighting the anesthesia.
The doctor patted me on the shoulder, “Don’t worry, it will all be just fine.”
I wanted to say to him, “No, I doubt it will be just fine! I have betrayed my son’s trust and will probably be dealing with the fall-out from this for a long time.”
The doctor assured me that he was in a dissociative state and even though he seemed conscious, he really didn’t understand what was going on, “He’s not really hearing anything you say. You can go to the waiting room, this won’t take long now.”
“But I promised him I would stay with him,” I told the doctor.
“I’m sorry, you can’t be in the room,” he replied, as he firmly escorted me out the door.
I sat in the waiting room feeling sick about how Dylan’s treatment had evolved. Finally, the nurse came to get me. As I walked into the room, the smiling doctor told me that everything had gone very well. “Don’t worry about a thing, he won’t remember any of it,” he again assured me.
I brought my groggy, nauseous boy home and put him to bed. When he woke up a few hours later, the first thing he murmured was, “I remember everything.” He then proceeded to give me a blow-by-blow account of the entire episode. His recitation ended with, “You are my Mom, you are supposed to protect me!”
I wished I had a video of that conversation to show to the doctor. I wanted to tell him that he should actively listen to the concerns of parents whose children have disabilities. We know our kids better than anyone else and we work hard to try to ensure a good outcome. I’m quite certain the doctor felt it was a successful surgery. Within a few days, he would probably have forgotten the incident, but Dylan didn’t forget. He is wary of any medical procedure and reluctant to trust doctors.
You Can’t Choose Your Family
For many parents, when the outside world is unkind to their kids, they can retreat into the comfort of their family. But for parents of 2e kids, sometimes, the extended family can be just as cruel. We have endured critiques of our parenting efforts and of our children’s behavior. Some comments hurt worse than others and some you can just let go. I try to understand how we must look to extended family members and even try to view things from their perspective. Sadly, that is not often reciprocated.
The first Christmas after my children were born, I took my ten month old babies home to meet their grandparents, aunts, uncles, and cousins on my side of the family. I had talked openly with my family about the clinicians’ various concerns about our children’s development and health. Tom and I had discussed with family members our worries about Dylan’s developmental delays and Morgan’s heart problems. Yet, despite our efforts to show we were informed and actively addressing the issues, family members still seemed to think we needed to be made aware that our children had “problems.”
At a large family dinner one night, a relative loudly commented that, “something is clearly wrong,” as he watched our son stare at his hand throughout dinner. In the awkward silence that followed, I wondered why this relative thought his comment was necessary. I tried to swallow the lump in my throat and respond without tears, but it was just too hard to do. I finally managed to say that we were meeting with specialists and hoped they could find out what Dylan needed, but it was painful to sit there being judged.
As my children grew and several diagnoses were assigned and discarded, we tried to keep our families in the loop. When we finally found out that the twins were 2e, we shared that news, and explained the meaning. Our families knew that both children had a high intellect and anxiety issues. They also knew Dylan had sensory problems and difficulty with social interactions. Close family members had heard enough of our experiences to formulate a general picture. By the time my children were preteens, Tom and I felt that most of our family members had a good understanding of both sides of being 2e. Then we went to a family reunion.
The first day we were there, an older cousin began to terrorize Dylan. He chased him on his bicycle and cornered him against the door stoop. When Dylan began to freak out and cry, his cousin laughed at him. By the time Tom got to the scene, the cousin had ridden away. Tom comforted Dylan and then they walked around until they found the cousin. Tom tried to explain to the cousin why this was so frightening to Dylan, but the cousin protested that he was just “playing.”
Later that day, he did it again. Dylan retreated to the motor home for refuge. This time my husband talked to the cousin’s dad. Another relative overheard the conversation, and later that day the relative told me that we were making a big deal out of nothing. He also warned me that we had better toughen Dylan up or he’d end up being a crybaby. There was no appreciation for his tenderness and lack of guile.
This is a child who feels love so intensely that he can hardly bear it. I have told my children I loved them many times a day, since before they were born. Morgan readily reciprocates and I bask in her sweet affection. Until Dylan was four, he never uttered those words. We had been told he might be on the autism spectrum, so I attributed it to that.
Then one day he sidled up to me and shyly whispered, “Mom, there is something in the kitchen for you but don’t open it until I am in my room!” Then he ran to his room and closed the door. I walked into the kitchen to find a wad of taped paper the size of a grapefruit. I peeled away layer after layer to find a post-it page in the center with “Mommy, I love you!” written in tiny letters.
I felt such an incredible rush of feelings: love, hope, excitement, and disbelief. Dylan had told me he loved me! It was then that I understood. His feelings were so overwhelming that he could only express them in writing from two rooms away. If you put that child into an arena where everyone tells him feelings are for sissies, life gets pretty confusing. He was devastated that family members, who profess to love him, teased and tormented him without remorse.
The rest of the reunion was not relaxing for anyone. Eventually, Dylan was afraid to leave the motor home and my husband was afraid to leave Dylan. When we all came together for meals or sitting around the campfire, we were fair game for jokes and judgment. While I can take being the butt of a joke now and then, I can’t stand by and watch that happen to our children; particularly when they already feel different.
It is difficult enough to know that most of the people in the world don’t understand your child, and often don’t try very hard to be accommodating; but it is much harder to watch it happen within the circle of your family. When it does, it brings all my own childhood insecurities to the surface, and reminds me of my own confusing past.