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.
My daughter, who has Down syndrome, turned 18 last week. She proudly announced that she’s an adult now. She’s aware of a lot of things in life. She watches all the preteen shows on TV and Netflix and is a sucker for anything to do with romance. She oohs and aahs when there is a wedding in a show. She loves it when they hold hands and kiss. She dreams of her own wedding and finding her true love.
A few year ago we were driving in the car together. She was staring out the window and said, “I really want to get married.” She had said this many times before and has said it many times since. But, there was something in her voice that tugged at my heart that particular time. Even though she’s pretty bright, she’s not capable of being independent, let alone married. Getting married in this life is not in the cards for her.
I have told her that someday she will get married in heaven. She will have a beautiful wedding and her family will be there and she will be very happy. She asks me questions about it frequently. Questions like, “Will I have a beautiful dress?” “Will I have flowers?” “Who is going to be my husband?” I try to answer these questions honestly with the little knowledge I actually have about heaven. I tell her, “I’m sure you will have a beautiful gown.” I don’t know if she’ll have flowers but I have told her, “I’m sure your wedding will be just how you want it.” When she asks about her husband I tell her, “I don’t know who you are going to marry, but Heavenly Father does and I’m sure He has someone wonderful in mind for you.” She’ll clap her hands with joy at the prospect of it all, but really, these answers just satisfy her temporarily. She still wants to get married in this life.
She has seen her sisters and brothers get married. She has seen them having children, and she wants the same joy that creating a family brings. It seems to be inborn in her to want to find a true love, a soul mate. I tell her that not everyone gets married in this life, but that hasn’t deterred her. She really wants to get married.
I haven’t told her this because she’s really not capable of understanding it, but I have been thinking about how there are a lot of things people want in this life that will never happen. People have problems they would like solved. Some have health issues they would like cured. Many want to be free from addictions, have enough money to meet their needs, or have family problems go away. Some people yearn for children. I think we can look at society, the world at large, and want for things that seem like will never happen. All of us, in some way, want for something that will probably never happen.
That seems to be part of life. To recognize that there are things that will not be in this life, and to hope for better things in the world to come. How do we deal with life when it doesn’t give us what we want most? When our hearts seem to be breaking and our souls are stretched to their limits? For me, faith in Jesus Christ and hope in His promises are sometimes the only things that I can fall back on. I trust in His absolute knowledge and power. Joseph Smith said that to have faith in God we need to know and trust in the Nature and Character of God. We need to know that He loves us, is mindful of us and trust that He knows what is best. To know that He knows what is going on, and if we stay faithful despite our circumstances, He will make all things right. I love the scripture found in Revelations 21:4 which says, “And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying. neither shall there be any more pain…” And so, with this promise we go forward knowing that God always fulfills His promises. We go forward, knowing there are things that we want, that we will never have in his life.
My daughter will not marry in this life, she will not have what she wants most now. But I am sure she will marry in the next world. I am sure because I know and trust in the Nature and Character of God. He will wipe away her tears and hold her close, and her pain will be gone. She will have what the faithful inherit.
Recently my daughter had me help her cut some paper. This is the daughter who has Down syndrome. She was trying to cut out something from a magazine to tape it on a jar. I showed her how to cut around it and started the cutting for her. I watched her cut it and for the first time noticed her hand was in the way of her seeing what she was cutting.
It occurred to me that I had started cutting on the right side of the picture and she is left-handed. I have done this many times over the years and never once noticed that she couldn’t see what she was cutting because her hand was in the way. It explained all of the jagged edges and uneven cuts she always made. I had always wondered why she couldn’t cut anything out straight.
I stopped her and restarted the cut on the left side of the picture and she continue to cut around from that side. She cut evenly and smoothly, no jagged edges and no cutting in the wrong place. She’s 17 years old and has been using scissors since preschool and I just notice this.
Sometimes it’s really easy to see things only from my right-handed perspective. To just do something like I always do, or to think things through from my reference point. Often it’s easy for me to not notice what stops someone from doing a good job. Then I wonder why that person didn’t measure up. I wonder why they can’t cut out something without jagged edges. My right-handed perspective gets in the way.
Often I’m dealing with “left-handed people”. People who are different from me. Someone who methods and ways contrast from mine. His or her ways are just different from mine, not bad or worse. Sometimes it is easy to judge another as incompetent, or foolish or even incapable. When I do that it’s because I’m not making the effort to look at things from his or her perspective.
Usually telling someone to just do it the way I do it is not the answer. That often produces frustration and the previous results. If I really want to understand, I need to see things from the other person’s viewpoint. Looking at something as another sees it can be illuminating. Concentrating on another person’s skills and abilities and what they do well, can make a big difference. Trying to figure out what is stopping that person from being successful is helpful. And then taking the next step to figure out a way to help them succeed. Often it’s just little adjustments. Like switching sides of the paper when cutting.
Viewing something from another person’s perspective often helps me understand better, be less judgmental and more compassionate. When I do that I become a better parent, teacher, spouse and friend. When I step aside from a right-handed perspective to see through a left-handed view, I don’t have to wonder why someone didn’t measure up. That’s because the jagged edges and uneven cuts usually go away.
Life Skills Class at Junior High
A few years ago my daughter, who has Down Syndrome, transitioned from junior high school to high school. She had been in a Life Skills class in junior high where they teach many of the basics such as reading, math, writing, and other skills that are needed to function in society. In her Life Skills class were other teens with developmental disabilities. She was lucky because she also had many classes in the normal school setting that allowed her to participate in classes like choir, sewing, health and cooking. It’s a great blending of experiences and classes that the students are offered.
Talking About His Accomplishments Produced A Big Smile
At the end of her junior high experience the Life Skills teacher held a “graduation” for all of the teens going on to high school. As part of the graduation the teacher read all of the accomplishments of each student during his or her three years at the school. She had the student stand as she read off the list. One young man, as she was talking about his accomplishments, was smiling. His smile got bigger and bigger as the teacher kept reading. When the teacher finished, with a look of awe and joy on his face, he said, “I’m amazing!” The teacher said, “You are amazing!” Of course everyone in the classroom started smiling too. He said it with such wonder and sincerity that it was really a joy to have witnessed it.
Making the World a Better Place
I have thought about that sweet experience many times since then. The look of awe and wonder on his face still brings a smile to my face. He didn’t solve world hunger or end international wars. He didn’t figure out the solution to the homeless problem or fix the political divide. The things he accomplished were actually quite simple things. Because of his developmental disabilities he obviously will never accomplish much by world standards. Yet in his own way, he has added to the goodness of the world. He excelled where and how he could, and added light to the world through his small accomplishments. And remarkably, if each of us could say that we have excelled where and how we could, the world would be a better place. I often think of Gordon B. Hinckley who was known for his optimism and encouragement for each of us to be a little better every day. He once said, “There is room for improvement in every life. Regardless of our occupations, regardless of our circumstances, we can improve ourselves and while doing so have an effect on the lives of those around us (October 2002).” That young man improved himself through the things he accomplished and made the world a little better. And that is the challenge each of us has. To be a little better than we were the day before and to make the world a better place by doing so.
A Basketball Tournament For Teens With Disabilities
Recently I attended a delightful basketball tournament for people with developmental disabilities. This tournament is sponsored by the local school district and is run by volunteers. Each of the teams consisted of 3 teens with some kind of a disability and 2 peer tutors. A peer tutor is a teenager who is normally abled and helps another teen with disabilities be successful in the school setting. This time the peer tutors were there to teach, encourage and help the teens be successful in basketball. Whenever a peer tutor got the ball he or she would throw it to a teen with disabilities and then instruct them where to go and what to do. Sometimes teens would throw the ball and miss the basket and then the ball was given to them to try again, and then again. Everyone would stop playing to allow the teens to be successful. If they actually made a basket, it was pure magic! The look on their faces was so sweet, radiating pure happiness. The whole day was all about helping these teens have a great experience.
For The Fun Of It
There were even a few teens in wheelchairs with a peer tutor manning the chair and running down the court with everyone else. I say running but really, at best, it was just a fast walk. Most of the teens with disabilities just couldn’t be hurried. Parents and coaches would shout “hurry” or “run” but it just wasn’t important to them. They would walk down the court holding the ball, not even bouncing it. Sometimes a teen on one team would help another on a different team by giving them the ball or saying encouraging things. They were there for the fun of it, not to win. The great thing is that no matter which team made a basket, everyone cheered.
Pink Shirts Everywhere
What was truly amazing to me was that there were 8 games going on at the same time, and each team played 4 games with a half time show from the various high school dance teams. And of course there was also the big playoff between the two highest scoring teams, with trophies for the winners. When you add up how many volunteers it took to pull this tournament off it’s astounding. Adult organizers, score keepers, coaches, people who got the school ready with directional signs and the peer tutors were just the obvious volunteers. All of the volunteers were in pink shirts and I saw hundreds of pink shirts! The volunteers, mostly peer tutors, were spending their Saturday helping these kids with disabilities play basketball.
Hope For The Youth Of The World
I have been to this tournament two years in a row now and both times I have been completely overwhelmed with the kindness, camaraderie, friendship and genuine caring exhibited by everyone involved. It’s really hard to understand the feeling that is there unless you have been there. Everyone was there just for the opportunity to help someone else. Sometimes we hear about a lot of bad stuff happening in the world today, a lot of it involving young people. This event and others like it give me a lot of hope for the youth of the world. There are some caring, unselfish teens out there doing some simple and yet significant things to help and serve others. Service truly brings a sweet feeling into life and this event was all about service. There are so many needs and so many ways to serve others and I can guarantee that if you reach out to serve others your life will be happier.
I have written before about an organization called Orange Socks. Their mission is to teach people about the joys of raising a child with disabilities. Most people hear about or assume the difficulties and Orange Socks wants people to know there are good times as well as hard times. Their tag line is “inspiring life despite a diagnosis.” Orange Socks interviews families who have a child with disabilities and posts the interviews on their website as well as doing podcasts. They want people who are facing a diagnosis to hear from people who actually have a child with that disability. It helps to learn from those who have gone before us, to learn from them the realities of raising that child, of the good and the hard.
The reason why I am writing about this again is thatI have been privileged to go to several of the interviews. I was touched by the fierce love and advocacy the parents all have for their child and in some cases, children. I was impressed that these parents spoke mostly of the joys and happiness their child has brought to their family. When asked about the difficulties every parent said it was worth it, that they got far more back than they ever gave. I was amazed that in every interview I went to, except for one, the parents all spoke about how they relied on prayer to help them with their challenges. They spoke of receiving inspiration to help guide them as they cared for their child. The interviews have taken place all over the country, with people from many different religions. It really surprised me that so many people talked about praying. It surprised me that so many talked about relying on God to help them. It gave me hope to know of so many good people in the world. Sometimes it is easy to focus on the distressing things we hear about going on in the world. The media seems to blast daily sometimes even hourly the bad things that occur. It’s easy to think that most people are unkind and hurtful from watching the news.
There was another thing that happened also has given me hope. Several years ago I attended a 3 week program in Minnesota that focused on how to live with chronic pain. Every morning we had to set goals for the day, which were written on a white board in the classroom. One day, another woman in the program said her goal for the day was to express more gratitude in her prayers. That one comment is probably the thing I remember most from attending the chronic pain program. It told me that way over in Minnesota, there was a woman who believed in praying, who believed in God and in acting on that belief. It showed me that there are good people all over the country and world. Sometimes it seems like there is so much bad, and hurtful and horrific things that are happening. When I reflect on the parents interviewed and the woman from the program, I remember that there are good people in the world. Good people who believe in praying and believe in God. Who believe in helping others and giving service to their children. Even with the media bombarding us about all of the bad happening I know there is much good in the world. We live in scary times, but we also live in good and hopeful times. Take time to look for the good and you will find it!
I was 45 when my last child was born. Because of my age the doctors wanted me to do genetic testing to look for possible defects. I declined because even if the tests showed something I wouldn’t have had an abortion, so why bother. I really thought there was nothing wrong. I had had seven other children that were healthy and I knew this child was supposed to come to our home so I just thought there couldn’t possibly be something wrong. Actually, I’m really glad I didn’t know beforehand that she had Down Syndrome because I would have worried about it the entire pregnancy. I would have gone to the worst possible scenarios and possibly have felt bleak. Not knowing beforehand saved me from a lot of unnecessary anxiety.
I have always had c-sections and when she was being born I could feel what the doctors were doing so the anesthesiologist quickly put me out. Later, in the recovery room, in my hazy rousing, I could hear my husband say that the baby had Down Syndrome. This was also a blessing because my brain began to process that information. When I was fully awake I had already accepted the information and surprisingly I was calm. Mostly I think I was trying to figure out what life was going to look like now. This was really different from how I thought it was going to be and I was trying to wrap my brain around my new reality, in a little bit of a daze.
She was born in the early afternoon and that evening after my husband had gone home and I was alone, I sat there pondering the situation. I think because I was calm I was able to hear the whisperings of the Spirit. I remembered two things that had happened in the past. One, when I was 25, was a Relief Society lesson taught by a woman who had four children, three of them with major disabilities. She spoke about how she had prayed about her children and their lives she had come to understand that for some reason this was God’s will and that her children had accepted this assignment in the premortal world. Because her children had great faith and obedience they had followed the will of the Father. At the time of the lesson I had a very strong witness that what she was saying was true. So strong in fact that I wondered about why I had had that experience. Every so often I would ponder on it throughout the years, still puzzled about the depth of it.
The next experience was remembering an Ensign (April 1993, p 27) article I had read several years before. The article was about a man who was pondering about his daughter with Down Syndrome, looking for some kind of peace as to why she was born this way. While pondering he had a remarkable experience. He said that it wasn’t a vision but more like a scenario that impressed itself on his consciousness. In his mind he saw his “family” in the premortal world and our Father and came to them and said He had an assignment for one of them. He said that our Father went on to say that the one would experience earth life differently from the rest of the family and it was necessary so that they could learn how to love purely and unconditionally. The man said that the “brightest and most beautiful” among them stepped forward and volunteered. The volunteer was his daughter with Down Syndrome. He wasn’t sure that this really happened in the premortal world but the principle that he learned was important: she was Child of God and that they had much to learn from each other. I personally think experiences like this are given to us in terms we can understand and are not literal, but they teach us important truths. The truth here is that our children come to us with great faith and together we learn things that help us grow and become better than we could otherwise.
So, back to the night in the hospital when my daughter was born. These two incidents came to my mind with the thought, “these were to prepare you for her.” A great peace and sense of wonderment filled me. Everything would be okay and we would be fine. That experience with the Spirit that night taught me several things. One was that this was not an accident. For some reason this was part of the plan. She was meant to come to my family and because of her great faith she accepted the will of the Father and was born to a different kind of life. I often remind myself that she is the “brightest and most beautiful” among us even if I can’t see that right now. She can be stubborn and obviously is not perfect. Another thing I learned was that God is aware of the details of our lives and prepares us for the things that are going to happen. I was not aware that I was being prepared but that didn’t stop the preparation from happening. When she was born God had taught me what I needed to know in order to love and care for her, and accept her. I still had a lot to learn but the foundation was in place and we could go forward secure in the knowledge that we would have His help. I have also learned since then that no matter what child you have there will be difficulties, challenges and hard times. Each child is unique and comes with his or her own challenges, they’re just usually not as obvious as Down Syndrome. I have also learned there will also be joys, peace and love. Every child has the ability to bring joy to your life if you are open to it. So, having a daughter with Down Syndrome is not exactly what I expected or thought how it should be. It’s even better.
My family has been involved in a project called Orange Socks. It’s an initiative of Rise, inc. and its purpose is educate people on the joys and challenges of raising a child with disabilities. Its tag line is “Inspiring Life Despite a Diagnosis” and they work to connect parents with each other to create support systems. Most of the time people associate challenges with raising a child who has disabilities but often don’t know of the joys that come to parents and siblings. The initiative started when statistics showed that most children with Down Syndrome are aborted. The Orange Socks founder realized that most people who are told they are having a child with Down Syndrome only heard the negative things about having a child with this condition. He decided to interview parents of children with Down Syndrome to get the good things as well as the hard about raising a child with this syndrome. It didn’t take long before Orange Socks branched out to include all disabilities and to also interview siblings. The initiative is now celebrating its two year anniversary and has interviewed over 100 families from all over the United States. The interviews can be heard on their website Orangesocks.org. In the last year they have also started doing video interviews.
I have been lucky enough to be involved in some of the interviews. I am amazed to see parents tackling hard situations and more than rising to the occasion. They grow as individuals as they care for their children in some times hard ways. Often other people will say something like “I could never raise a child with disabilities, I’m not strong enough.” What I have learned is that people are stronger than they think. In the interviews I sat in the parents all talked about how they rely on prayer and God to help them. They also talk about how their other children have learned to be more compassionate and kind. People sometimes forget that whatever child they have will have some challenges. In my experience with my daughter who has Down Syndrome I have some challenges that I did not have with my other children. But there are also some challenges that I had with my other children that I will not have with her, and she definitely has taught us a lot.
What really amazes me is that these parents in the interviews focus on the joy their child has brought to their lives and how much they love that child. They also talked about how they feel it is a privilege to “raise an angel.” The Orange Socks founder says there are usually three stages that parents go through when they find out they are having a child with disabilities. The first stage is “Why me,” as they come to terms with it. The second is “Why not me” as they realize life goes on and they are stronger than they thought. Eventually parents get to the third stage which is “Thank God it’s me” when they learn they have the privilege of raising an angel.
My daughter with Down Syndrome loves to sing. She sings with the radio, TV shows, at church and in choirs both at church and in school. Sometimes she even has the right tune, notes and words. I think she loves to sing so much that sometimes the correct words or tune get in the way of expressing herself. She truly takes joy in singing. We are fortunate that people around her accept her singing the way it is. She’s always welcomed into the choirs she sings in and even though her school choir teacher consistently produces award-winning choirs, and I’m sure he cringes sometimes at her lack of blending. At church you can hear her sometimes singing in the choir standing out on not quite the right note but the choir directors always express how much they love having her sing with them. She especially loves to sing church music and when she sings, she sings it with her whole heart. I think that when God hears her singing He hears her love of it, sees her joy in it and takes great pleasure in seeing one of His daughters enjoying something so thoroughly. I think her offering is acceptable to Him even though it is not even close to being perfect. This thought gives me hope that in the many things I’m not great at, not close to being perfect in or just sometimes lousy at doing that God sees my efforts with love and acceptance. Sometimes my efforts are pretty feeble too and I fall short of my expectations and His. Then I have to pick myself up and try harder to do and be better. Sometimes the things I fall short on are the same things I have been falling short on for years. It’s taken me a while but I have figured out that as long as I’m honestly trying I’m doing okay. Efforts don’t have to be perfect to be good. God loves me even with all of my imperfections and I don’t have to do things perfectly for Him to accept me. Yes, He wants me to improve and to consistently work at being better but I think I am harder on myself than He is on me. When I don’t measure up I often beat myself up with negative self-talk. Sometimes I tell myself that I will never get better, that I will never conquer a certain problem, and this negative self-talk is actually what keeps me from rising up and doing better. I need to remember my daughter and her love of singing and to remember that God takes joy in my efforts even though they are not perfect.
One day several years ago I got a phone call from one of my son’s 5th grade teacher. She was calling to talk with me about how my divorce was affecting my son and his school work. “Divorce?” I said. “I’m not getting a divorce.” It seems my son had found a creative way to get out of trouble for not doing his homework by telling his teacher that his parents were getting a divorce and it was upsetting him so much that he was unable to do his homework. After reassuring her that my husband and I were happily married I also reassured her that this son would be turning in his homework in the future. This same son is also the one who made bombs in soda bottles which caught our field on fire, climbed out his bedroom window with a 3 story drop below to play on the roof and jumped down our laundry chute and broke the bottom out of it. He found a way to climb up onto the school’s roof which was supposed to be impossible and then of course the principal wanted to know how he did it so she could prevent other kids from doing the same thing. My son proudly showed her how he managed it which then promptly negated the effects of any punishment we did. He stuffed toilet paper in toilets to flood them and used a hatchet to chop at the support beams in our then unfinished basement. He used a rope to tie bedroom door knobs together so his sisters could not leave their rooms and he took things apart just to see how they worked, usually with a hammer. One time my husband found something broken and yelled our son’s name. This son asked “Why did you assume it was me?” And of course my husband said “because it usually is you!” My husband and I talk frequently about how surprised we are that this son of ours managed to live to adulthood. He crashed several 4-wheelers, rode his motorcycle standing on the seat, and rode skateboards with his friends on their stomachs underground in the city’s storm drainage system. Why on their stomachs? Because the pipe was only 2 feet in diameter so they couldn’t sit or stand up. We despaired over this son and couldn’t figure out why he went from one stupid/crazy/dangerous thing to the next. He argued with us over everything, and I mean everything. He once told me that anything I told him to do made him want to do just the opposite. I often thought that if he had just put half of the energy into homework or something positive the results would have been amazing. The reason why I’m telling you all of this? This son who seemed to go from one crazy thing to the next and who I fretted and despaired over has turned out to be a great adult. He’s married to a beautiful young woman and they have a little girl and he has a job he loves and really works hard at it. He takes being a good husband and father seriously, and he thanks my husband and me frequently for helping him in his life. If I had raising him to do all over again I would praise more often, trust a little more, take the long view a lot more and ignore most of the stupid stuff. Sometimes in the thick of things it’s really easy to lose sight of the big picture, it’s really easy to think that now means forever. This son who I fretted and worried over has grown up just fine.