Naughty or Nice
In church the Sunday before Christmas, my daughter who has Down syndrome, was asked by a man if Santa was going to visit her. She excitedly said yes, and then the man asked her if she had been “nice.” She immediately got what he was referring to and said, “I’ve been nice, but he’s been naughty,” pointing to her dad. We all burst out laughing because what she said was very unexpected and it was actually funny. She has a good sense of humor.
Because of things like this, Down syndrome in some ways is puzzling to me. There are some things my daughter’s not good at and probably never will be. She can do basic math but even that’s iffy. She reads really well but her comprehension is not great. I don’t know how many times she called 911 and the police came to our home. No matter how many times we told her to not do that, she kept doing it. We finally got rid of our land line in order to prevent it.
She will wear clothes that are dirty and then put them back in her drawers. In the mornings before school, I have to look her over to make sure she’s not wearing something dirty. The only time she will wear socks is if we are going bowling, so her feet and shoes are usually stinky. She’s not allowed to take her shoes off in the car!
Normal Human Things
Even as I write these things I know they are all small things, even petty things. They are also normal human being things. Things that even other people without disabilities might do or struggle with.
She’s also got some great abilities though. She’s got a great sense of humor, as evidenced by the story above. Often she says things that are really funny, and she knows she’s being funny. I can see the sly look on her face when she’s saying something funny. She’s great at board games and gets the strategy for many games, and she loves card games. Yet she struggles with jigsaw puzzles. I keep showing her how the jigsaw puzzles work and she keeps trying and is getting better but I doubt she will ever be able to do one by herself.
Something else she’s really good at is cleaning. She cleans her room and bathroom every Saturday. She has jobs that she does every day after school, and she actually does well with them. My daughter sets the table nightly, and helps clean up after dinner, usually putting the left over food into smaller containers. Frequently she helps me with some yard work, and lots of other projects I have. She has fractured skills. Like I said, Down syndrome is somewhat puzzling to me.
She Can Tell Time
She can tell time and wears an analog watch. Usually she gets herself up in the morning at the right time without using an alarm clock. I’m not sure how she does that but she rarely oversleeps. I have other family members who can only tell time on a digital clock, so it really is amazing to me that she has this ability.
She tunes into people and their emotions and is emotional responsive. If someone is sad or hurting in some way, she is immediately by his or her side giving them hugs or just sitting with them and maybe holding that person’s hand.
She’s also spiritually sensitive. Sometimes in meetings she tells me she can feel the Holy Ghost. She reads her scriptures nightly, even though she has little comprehension of what she’s reading. It’s remarkable that she always says her prayers because most people with intellectual disabilities are very literal. She prays to a Being she cannot see and yet she prays, and she knows her Heavenly Father loves her. This is a young woman of great faith.
I’m Not Blind to Her Disabilities
She is so limited in some ways and so advanced in other ways. She has her talents and skills, and she has things she’s not good at, and probably never will be. I’m not blind to her disabilities but maybe really, she is just more like an average person than seems apparent, since all people have things they’re good at and things they’re not good at. Maybe she’s just a person who has her quirks and ways of doing things, like most other people.
I know there are people who are often puzzled by the things I do or don’t do, or even can’t do. So, really I probably shouldn’t be puzzled by some aspects of Down syndrome. I just need to look at it differently. Really, she’s just another person in my life that I sometimes get frustrated with, I’m happy to be with or even perplexed by. She is someone I love and admire. She is my daughter.
At dinnertime, when my older children were younger, any food that looked out of the ordinary or different would immediately provoke a comment such as “I don’t like that” or “can I have cereal instead?” Of course we would always respond “you’ve never even tried it so how do you know you don’t like it” and then a battle would happen with frustrated parents and crying kids. Since I like to cook and often tried new recipes this was an ongoing occurrence. One day we got smart and introduced the “no thank you bite.” If someone didn’t want to try something new, or even some of the suspicious looking foods I fixed that weren’t new, they would have to take a “no thank you bite.” One bite and then if they didn’t like it, they didn’t have to eat it-no snide comments or probing questions asked. At first it was kind of a battle to get them to go along with it but as they tried things and said they didn’t like them, we just thanked them for trying the item and let the matter drop. The process became much easier, and the battles and coaxing stopped and we found that about 90% of the time they ended up liking the new food they tried. This became reinforcing, so it was no longer difficult to get them to try something new and of course as other kids came along this system was already in place and followed their siblings example. My kids became adventurous eaters even trying new and different things in restaurants, sometimes trying things that looked even suspicious to me! I knew we had been successful with this when one day a friend of mine observed “your kids will eat anything!”
When I was a freshman at BYU I met this young woman who in looking at her was not very attractive. She was scrawny with poor posture. Her hair was cut in an a very unflattering way and it was frizzy and very apparent she didn’t know what to do with it. She had white spots on her front teeth and scars all over her face from acne. She was what someone might call homely. One day she introduced me to her fiancé who was tall, good looking and even dressed nicely and I remember thinking “what does he see in her?” As I got to know her I noticed how kind she was, how she was the first to volunteer to help someone and how positive she was. She always had kind things to say about others. She was truly a joy to be around and I grew to respect her greatly. As I got to know her fiancé I realized he was pretty corny, and not very bright so it was difficult to have a conversation with him and he seemed a little self-absorbed. One day when I was working with her on a project he came over and when I saw the two of them together I remember thinking “what does she ever see in him” and then of course laughed at myself when I realized the complete turn around that I had down. Sometimes when I first meet people it’s easy to see only their outward appearance, and I have found that I’m often wrong in my judgement of them, for good or bad. She taught me what true beauty is.