“I Don’t Have to Carry My Stuff”
I would say this week was tough, but it was the same as it is every week, and the same it has been for a very long time. It’s hard to know what someone else is thinking. And your own child, with special needs, may not be thinking the same thing you are thinking at all. My daughter becomes very stressed when she has to tote a lot at once. She doesn’t want to drop anything. If she doesn’t have to move things by herself she will say, “I don’t have to carry my stuff” with a sigh of relief.
Today she kicked her older sister on the trampoline and refused to come out. I had to remove her and take her inside while she was screaming. And when I say screaming I mean screaming. Last night she squeezed her younger sister’s foot, and arm, purposely with ill intent, and pushed her. Every day this week she fought against me, mentally and physically, because she didn’t want to do any of her school work. Twice she told me that she needed a new family because we just didn’t listen to her, and as she said those words she put her hands on her little face and screamed.
Loving in Tough Moments
I was proud of my reaction, those times, although I don’t always react as gracefully. I was able to stay calm. As we hugged each other, I told her that I knew she didn’t mean those words. I told her that we love her and always will, and that although those words hurt my feelings I knew she was feeling frustrated and that I was there to help her deal with those feelings. At least twice this week I had to hold her against her will in the middle of a fit to keep her from hurting herself. It’s always the same, the fits unpredictable and explosive. Once they are over she hugs me and apologizes and says, “Mommy, I’m sorry I was mean to you.”
Maybe it’s Terrible Twos
She has been this way since she was little and I hoped it would get better. I always said it was like her emotions were too big for her little body. I remember her putting her tiny hands in her mouth as a toddler and screaming and scratching herself. She would have blood coming down her fingers and her face and she still would not stop. She would fall out in the floor like her body was limp and say she couldn’t get up. We tried everything and nothing worked. We thought, “This must be what terrible twos are like. Terrible twos are a real thing.” Our older daughter never behaved that way. We really thought it was just a toddler phase that would pass, but it didn’t.
Last year, when she was six, we found out that she had sleep apnea. No recommendations were made by the specialists, except to let her sleep as much as possible. I decided to take her to a new pediatrician because her sleeping was so excessive it was still concerning me. Her behavior was becoming a greater concern. The new doctor said that many people don’t understand that sleep apnea often manifests itself in the same way as ADHD. More tests were run and everything medical came back fine.
I still felt like there was something else, because the sleep apnea could explain much away, like her terrible tantrums, irritability, and her trouble focusing at school, but it couldn’t account for everything. These examples may not mean that much to a parent who hasn’t experienced anything like this, but for those who have, I imagine you will find some similarities.
Unique & Special ~ “I Don’t Have to Carry My Stuff”
My daughter has always had some quirkiness about her. I remember her watching the blinking light on the keypad by the door in the garage. She wouldn’t walk down the steps until the light stopped blinking. Then she didn’t want me to drive away until the garage door completely shut. She has always held on to tags. Even now, she has to have one and keeps it very close to her throughout the day, even when outside, and when asleep at night. My daughter arranges her toys on her bedroom floor in a meticulous order that only makes sense to her. She wants nothing touched or moved by anyone.
She doesn’t like bright lights and when noises are too loud she puts her hands over her ears. Sometimes the sounds don’t seem loud to anyone else, but they are to her. She put her hands over her ears at my sister’s birthday party when she knew we were about to say “Surprise.” At a classmates birthday party, I watched like it was in slow motion as all the other kids were having fun and she put her hands over her ears. She told me she wanted to leave. We left, and I was glad she told me that she wanted to leave. As we drove away, tears slid down my face as I thought about what she couldn’t enjoy and what she was missing.
One Day at a Time
She likes to repeat things, like rewinding parts of a show or movie to watch again, sometimes more than seven times. This can be frustrating for the rest of the family.
The hardest thing right now for me to deal with is her need to perfect her letters and numbers. She will erase letters and numbers, additional signs, and lines that look perfect to everyone else. To her, they look weird and have to be fixed. She can’t move on unless she fixes them. I have sat with her while she erased a number and rewrote it seven times. Imagine one number, 7 times, and then imagine how long it takes to complete school assignments. Imagine how hard it is to teach a concept when the focus is completely on the perfection of the writing. There is no reasoning with her in these moments, just as there is no reasoning during her fits.
Fight or Flight
Sometimes she sees people in inanimate objects and becomes very frightened. She is intensely afraid of characters, even if they are far away. I’m talking flight or fight scared so there are many things other kids enjoy that she does not. She willingly sat on Santa’s lap for a picture for the first time this year, at seven years old. She still becomes frightened about whether or not Santa is coming into our house to leave presents. For the second year in a row, she cried and panicked at her school sing along when the Grinch came out. She begs not to be taken to Disney when the commercials come on. The kids section at Busch Gardens is challenging enough. Chuck E. Cheese has been disastrous in the past but now we know they have Sensory Sensitive Sundays that we plan to try out.
The most challenging part of our first cruise, other than the characters we didn’t anticipate, was the muster drill (safety briefing). That showed us pretty quick that a cruise may not be a method of vacation we use again for a long time. Tons of people, crowded so close together we were touching and sweating and unable to move or see the person giving the information, with small kids becoming more miserable by the minute and crying was just too much. It may have been about 30 minutes (likely more because not all passengers showed up and they had to keep announcing names) but it felt like hours.
The crime dog, the fat cat from the bank; they also cause panic. When we pulled into Great Wolf Lodge as a surprise for her birthday, she said, “You know I don’t like it here. They have costumes.” She has seen some of the characters she is afraid of without the top portion of the costume on, as many people have suggested as a way to help her overcome this fear, but that was no help at all for her. We try to find a balance between protecting her and exposing her to help her understand and to allow her to have fun experiences with her sisters.
Right in the Stomach
It’s hard to tell if she is better or worse now that she is on medicine. At times it has definitely seemed worse. Medicine was recommended a few months ago and after years of trying to handle everything without medicine, we knew it was time to take that step. She sat on my lap as the tears fell down my face at the pediatric neurology office. The specialist said to me, “Has anyone ever told you that she may be on the autism spectrum?” I had wondered. I had Googled it. But when you hear someone else say it out loud it really hits you in the stomach.
Keep it Moving
I cried because I love her. I wish she didn’t have to have any struggles at all. It’s hard and people don’t understand, and I wished I had been able to identify and accept it much sooner. We are still in the figuring out stage and have been told that what she deals with may be a combination of sleep apnea, high functioning autism, ADHD, and/or anxiety.
To other parents going through this, my advice is to ignore the people in your life who don’t understand. You know, the ones who think a spanking will fix it because they can’t imagine that not all kids are the same or that mental health issues are real. Don’t try to convince them or explain what you are dealing with. Some people will never be supportive and it will just hurt your feelings. Keep it moving.
Find the people who do understand. Find the teacher who gives you tips that actually work. The teacher who warns you before a costume is visiting the classroom and loves your child every day. Find the friend whose child has experienced some of the very same things. The friend who understands how you feel when you are not okay. Find the coworker who recommends a great doctor.
I Don’t Have to Carry My Stuff
Some children were devastated by the news that schools were closing for the rest of the year. My daughter was happy. Not because she doesn’t like school once she’s there. Not because she doesn’t dearly love her teachers and her class. She was happy because as soon as I told her she said, “Yayyy, I don’t have to carry my stuff.”
You see, out of all the possible stressors a school day could hold, for her the biggest stress is when she has to carry her stuff from one classroom to the other. She has mentioned it throughout the year. I still wasn’t expecting that to be what she said when finding out she wasn’t going back to school. And although I wish school could resume, I am glad that for a little while longer she is comforted knowing “I don’t have to carry my stuff.” Her dad, her sisters, and I will always help her so she can say “I don’t have to carry my stuff…alone.” We will be there to help her carry, whatever the stuff may be.