I wish you could see my child the way I see her.
You only get to see the worst, or hear about it. The tantrums…or defiance…or mood swings…or outbursts.
Or maybe that is what you remember about her, it is always easier to remember the bad things about someone. And our human nature makes it so much more interesting to talk about someone who is labeled “bad” instead of the good that a person has.
But if you knew her like I do, you would feel different. You would feel like I do.
You would see a loving, beautiful child with dreamy blue eyes. A child who has hopes and dreams, just like yours does. A child who has feelings. A child who is hurt often, who feels alone, who carries a burden so big for someone so young.
A child who desperately longs for friends, who wants to be liked and accepted. But has to struggle with the daily sadness of other children avoiding her, ignoring her, or labeling her. No one to play with at recess, to visit, to have sleepovers, share secrets. Left out of the crowd. Not invited. On the sidelines, walking alone. Different.
I wish you could see her on happy days when she is in a good place. She is smart and funny, loving and affectionate. She is caring and loyal, energetic and creative. She does have more good days than bad, but no one seems to notice those.
You may not like her the way she is. She is a challenge, it’s true. She may have struck out against you or your child. There is no sympathy for her, or for us, her parents. We must have done something wrong. We must not be doing our job, right? She just needs discipline, “My child would never act like that!”
But you see, you have not been there, you don’t know the history. You don’t realize that she has an illness. An illness that no one likes to talk about, because it affects her brain, her moods, her actions, her emotions.
You expect that even though it is an illness, she should be able to control it. Like, if she had cancer, she could “will” the cancer cells to stop growing. Or if she were paralyzed, she could “will” herself to walk.
Don’t you realize how much she wishes she could control it? More than you or I may want her to! Don’t you realize how much pain and embarrassment she feels when she loses control of her actions, especially in front of her peers? How bad she feels about herself, how hard it is for her to like herself?
But no, it must be her fault, right? She can “choose” the way she behaves, why doesn’t she just behave well? We certainly don’t want to be around children who don’t behave. It is much easier to judge her or label her. We certainly don’t want her to be a bad influence on our children! She doesn’t deserve a chance. She doesn’t deserve tolerance, or forgiveness. Who knows how she will act tomorrow? She’s unpredictable!
The sad thing is that if she had an injury instead, and had to walk on crutches, you would carry her books and hold open doors for her.
If she had cancer, you would support her, you would support us. You would visit her. Send her gifts. You would want to help her out, try to make her smile, ease her pain.
If she had muscular dystrophy you would contribute to Jerry’s Kids every Labor Day. If she were in a wheel chair, you would gladly take the burden of pushing her so she could rest her tired arms. You would cheer every accomplishment. You would encourage her to go on. You would encourage your children to befriend her, to help her.
If she had diabetes, you would make sure the class treat included something she could have. If she collapsed from an insulin reaction, and fell against your child and hurt them, you would not be angry. It was an accident, an illness, she could not help it. You would be concerned for her too, as well as your child. You would forgive. You would tell your child not to be mad at her, because she could not help it.
But my child has an illness that most people don’t understand; even family members have trouble understanding it. She has an illness that makes her act out, be “mean,” or rude. Her social skills are behind, she doesn’t know how to fit in. She is impulsive, loud at times. She has trouble taking turns. She has “melt downs”. She is intense, can be bossy, easily frustrated, sometimes hits. She can’t sit still, she can’t follow directions.
She is afraid. She is alone. She is fragile. Who would choose this? Who would choose any illness? At least people can’t “see” when you have cancer or diabetes, they don’t blame you, they don’t judge you. Make fun of you. Avoid you. Shun you. It’s not their fault. It just happens. They didn’t choose it, they can’t control it.
WHAT IS WRONG WITH HER?!!! Why don’t her parents talk to her?! Why don’t they DO something?! Why don’t they MAKE her behave?!
Well, we DO talk to her, model behavior, role play, counsel, set limits, give rewards, give punishments, give medications, give time, give energy, give love, give patience, give support, tutor, help, hug, dry tears, forgive, encourage, tolerate, cry a lot and PRAY a lot.
You have dreams for your child…maybe they will be a doctor, a lawyer, an athlete, be famous, be President. I had those dreams too, once.
Now my dreams are that she makes it through the school year, sometimes just making it through the day. That she makes it through childhood, adolescence, to grow up. Have a normal life.
My prayers are that she will be happy, be well, have fun, smile. That she will have one friend, just one or two, that like her…just the way she is. That will accept her, support her, help her to like herself. That is all I ask Dear Lord. I don’t expect that her illness will go away. I know she will have a life of stress and sadness, being judged…being labeled…being blamed.
But if you would just give her a friend, a chance, some support, some tolerance, some forgiveness, and understanding. Give her those things in her life, and I think we might make it.
She has so much to give, she is so wonderful, a gift. She is a shining star, a “wild angel.” But no one knows, they won’t take the time to find out, to understand, to see the real her.
But I see her. And I love her…just the way she is.
If you knew her like I do, you would feel different.
You would feel like I do.
KTCaruso 11