Wednesday, March 26, 2014

Speaking Tate's Language

Tate, like most children with autism, is not proficient at beginning or maintaining conversations. Tate demonstrates this for us repeatedly. He begins conversations inappropriately often. Almost always the language is abrupt and sounds awkward. Occasionally the topic is inappropriate and sometimes even seems rude.

He's 12 and 6'2" and she's 10. Her BIG brother loves her. 
So many people start their conversations with Tate about his height or how much he has grown since they last saw him. Tate is over 6’ tall at the age of 12. We went to his doctor for a check up a few days ago. The doctor is a very small, petite woman. Tate began his greeting with, “You have gotten much smaller since I was here last time. Are you shrinking?” This sounded so very rude but Tate was not intending to be rude and it was not an attempt at a joke. He was just trying to start a conversation the way people often start one with him. Luckily, the doctor is an autism expert and did not skip a beat but continued the conversation about her size compared to his.

Last week we visited a mall and approached a clerk who was going to take our payment. As soon as the clerk opened her mouth to speak I feared what would follow. She had a very thick accent and was hard for us to understand. Tate did exactly what I thought he would. He said, “Hey! What language are you speaking?” I quickly said, “Tate, she is speaking English.” The clerk was very nice, told us where she was from, and said, “The next time you see me say, ‘Shalom.’ That is how we greet people in my country.” Tate responded with some gibberish that sounded something like, “Sinamma Coo Seendia oh oh new” and the clerk gave me a blank look. I said, “He thinks he is speaking Spanish when he does that.” She asked him to repeat it and he did. She smiled huge and asked him to say it one more time.” We walked away with Tate feeling very proud, but it could have gone the other way. I’m so thankful that people are usually understanding and friendly when Tate exhibits behaviors that appear peculiar. It is so much easier on his Mom.

Much of the time the topics of Tate’s conversation are unusual and appear odd but sometimes they are more inappropriate than others. Until a couple of years ago Tate frequently wet his bed at night. (See: "Wet or Dry" for that story.) This meant he had to have a bath or shower every morning. He would sometimes walk into his classroom first thing in the morning and announce to his class, “I took a shower this morning” or on one of the dry mornings he might broadcast that he had NOT had a shower that morning. He still occasionally tells people that he has showered and cannot seem to understand why we all keep telling him it is not an appropriate topic of conversation. This brings me to another story… Last week I saw a pair of underwear in his trashcan and I asked him about it. He told me they had a hole in them and it was no big deal. Since that day he is constantly telling me that we need to go purchase a replacement pair. I have assured him that he has plenty of underwear. It is a hot topic so it occurred to me that I should probably warn him that it was not something he should discuss at school. I was very clear when I explained to him that we do not discuss our underwear with our classmates or teachers. Yesterday, one of Tate’s teachers told me that Tate explained his “need” for some new underwear to her. She also explained to him that underwear is not a topic of conversation we use at school. Sigh. He just doesn’t get it. I know that if I buy him a new package of underwear he will stop talking about the need to get some and switch to telling people he has on new underwear instead.

Those awkward conversations are not always because Tate chooses inappropriate topics to discuss, but sometimes because he misunderstands so much of the language others are using. Last semester there were several babies born in our “school family” and the teachers gave the lucky families a baby shower. The morning after the shower, Tate overheard his teachers discussing the big shower they all attended from the night before. In Tate’s mind a shower involves water and soap so he pictured a bunch of wet teachers passing the soap around I am sure. Tate asked a question about their group shower and a red-faced teacher quickly explained that a baby shower entails no water or soap, but only gifts and refreshments. Tate’s world is such a confusing one.

Sometimes Tate makes loud observations about the people around us.  When Tate was much younger we were in a store and saw a man who had one arm missing. The man was wearing a western shirt, boots, and a cowboy hat. Tate very loudly said, “This place has one-armed cowboys.” I do not know if the man heard or not but if he did he was gracious enough not to say anything while I tried to hush Tate. It gets even “better” though, we saw the man again later in another place and stood right behind him in a line. I did my best to keep Tate’s attention on me and was successful at avoiding another outburst. Then, we found a seat to eat some lunch, and who came and sat at the very next table? You guessed it. The same man. I often think of Batman’s line in the old Batman movie when these kinds of things happen: “some days you just can’t get rid of a bomb.” For a year or two after that experience, Tate always referred to the store where we saw that man as, "the one-armed cowboy store."

Similar things have happened many times since I tried to hush Tate that day. We were in a nursing home once and Tate told an elderly woman that her face was very old and wrinkley. Another time he told a young staff member at his school that her face looked old. She was wonderful and gently told him that those kinds of things were better left unsaid. Just a short time after that, Tate was in the school office on Grandparents’ Day and there were a lot of older folks coming through to eat lunch with their grandchildren. Tate opened his mouth to comment and a teacher quickly said, “Tate, think about what you are going to say before you say it.” Tate stopped himself and said, “never mind.” When you hang out with Tate you need a good sense of humor and a lot of self-esteem.

I’ve been working hard with both of my special kids about talking ABOUT people in front of them. They will question me about a person’s clothing, their skin color, the language they are speaking, or anything else that is “different” about them. It is sometimes extremely embarrassing. A year ago we were heading into a movie theater when Tate stopped to look at a young man who was in a wheel chair.  He asked me, in front of the man, why he was in a wheel chair. I did not have many options that were not going to appear to be rude. I told Tate that he could speak to the man and ask him. The man, hearing everything that had been said, told Tate that he was born with a disease and his legs did not work. As Tate walked toward our theater I hung back and said, “My son was also born with a disability. I’m sorry he was rude and I thank you for being nice to him.” The young man told me that he could tell and he was not offended. When things like this happen I am sometimes horrified but then try to remember to count my blessings. Tate has strengths that so many mothers of children with autism would give anything to see in their own child. He can talk. He is interested in the world around him (even if those interests are limited and often peculiar). He can understand so many things that he is taught. Some things are just taking a lot longer to teach him than others. 

Tate’s Bible class teacher is fantastic with him and has a genuine love for him. I am so very thankful for her. She has a lot of patience and has listened to many of Tate’s long talks about movies and things that are important to him. When they are going to have a visitor in Bible class there is potential for disaster. A few weeks when a visitor came to class, Tate acknowledged her presence with, “Hey. What are you doing here?” It sounds so rude but he is basically just curious and wants some answers. His routine is broken and he needs to know why in order to feel comfortable with the change. Luckily the young lady was not offended and was very nice to Tate. I met her later and explained that Tate has autism but she had already figured it out. I’m finding that a lot of kids today are often very familiar with autism and both accepting and understanding. I would imagine it is due to full inclusion in the schools. When the general population is exposed to children with disabilities then it takes away so many of the questions and the fear of how to relate to them. Autism awareness is so important to families like mine.

Sometimes the moments that leave me horrified are the ones I can laugh really hard about later. I hope you enjoyed this read and will pass it on to someone else who might like to walk a mile in the shoes of a mom who has a wonderful son that thinks unconventionally.

Another post about language is: Who's on First? And here is one more: What brought you here? 

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Monday, March 24, 2014

No Regrets: The Things I Did Right

I have seventy-five blog posts up now. Most are connected to autism or Fetal Alcohol Syndrome. A few have nothing to do with either. In December I wrote a blog post called “Regrets” and to-date it is my most read post. I suppose that should tell me something. You can read it here: This post is a follow-up to that one, a sort of contrast. In the former post I spoke of the things I would do differently. The following are some of the things I would do exactly the same.

One of the things I do NOT regret is that my children have often heard, “We will have to ask Daddy”. My kids have grown up knowing that Dad was “in charge.” If I wanted to spend a large sum of money then I had to okay it with their dad. If the kids wanted to go somewhere I was unsure of, we waited to ask their Dad.  When occasionally one of the kids asked me “not to tell Daddy” it wasn’t going to happen. I share everything with their daddy. This, I do not regret. Candace Cameron-Bure wrote a blog post recently that rocked Hollywood. She said she was submissive to her husband and explained why. The media tried to make Candace look ridiculous over this. Being in submission to your husband is not something to be embarrassed about.

I also do not regret waiting three years after we were married to start our family. Shawn insisted that we needed to have some time alone before we added kids. It was a really good idea. It gave us so much time to plan and talk about what we each expected and hoped for, as well as save a down payment for a home. The first three years I worked and we saved my paycheck. We used Shawn’s paycheck to live. We always planned for me to be a stay-at-home-mom and it was much easier to do with the house already purchased and a budget set in place. Shawn has worked two jobs most of our married life and I have done some daycare off and on for many years so that I did not have to work outside the home. It is not possible for every mother to stay home with her children and not every family desires to structure their family this way. Some of the best moms I know work full time. I do not believe it is wrong for a mother to have a career but it was not for me and I have no regrets.

I do not regret that I insisted my children do chores and learn how to clean the house. I do not regret that I taught them how to load and unload a dishwasher, sort laundry and start the washing machine, run the vacuum, mop a floor, and clean a toilet. I do not regret that they were making cookies and other “messes” in the kitchen at a fairly young age. I do not regret that they have all had to mow lots of grass in the summer and rake lots of leaves in the fall. I do not regret that my sons have gone to work with their Dad and learned how to use tools. I do not regret that my older children had to take care of their younger siblings occasionally and even help them with their homework. I have no regrets about having a large family and doing without a few “extras” because of it.

I do not regret showing my children what love looks like. When I was growing up I had wonderful parents who showed affection to each other often. As a small child I remember squeezing in-between my folks often when they were sitting close together. As an older child I remember saying, “gross” when they kissed in front of me. There was never a doubt in my mind that my parents loved each other very much. My children have grown up seeing affectionate parents too. Of course, we are not inappropriate, but often show our love for each other. We hold hands, kiss, give hugs, sit close, and say sweet things to each other in front of our children. Until recently, it never occurred to me that other parents are not doing this. Our kids are telling us differently. Many of their friends have reported to them that they have never seen their parents show affection to each other. This astonishes me. I will never regret teaching our children what a strong marriage looks like. I love that my children know that I am “crazy in love” with their dad. 

Bible Camp!!
I do not regret all the times I sent my kids to a church related activity when they wanted to skip it. A few years ago I listened to a man lamenting about his young adult son who had stopped coming to worship services. He was wishing there was something he could do. I kept thinking the whole time: “the time for ‘doing something’ was a long time ago.” I was remembering all the Bible camps and youth rallies the boy had been invited to. He did not “like” to go to those things; he did not “want” to go to those things; so his parents did not SEND him to those things. His parents did not neglect his physical health, his academic education, his sports practices, or his hygiene. Why then did they let him make his own choices when it came to those spiritual activities? Not all of my children have “liked” the rustic Bible camps we have taken them to but they went anyway because their parents chose for them to go. They grew spiritually because of their experiences there. I can also remember how “inconvenient” it was for their dad to set aside a Saturday to take our oldest to a youth rally in Kansas City. He did it anyway. The Bible camp the kids attend faithfully every summer is at the most inconvenient time for their dad’s HVAC business but he takes a week off and goes with them. It sometimes comes at the risk of losing customers. He’s done this since our oldest was nine years old. I cannot count the number of gospel meetings we’ve been to or hosted at our own congregation. These things were very important for the training of our children. We do not regret all the time, travel, and money involved in this! This is something we did right. Young parents: Do not neglect your children’s spiritual health. Look ahead and picture them as strong Christian adults and think about what it will take to make that happen! Take advantage of Christian camps, area-wide singings, gospel meetings, and youth rallies! Your child may meet their best friends there.

I do not regret all the school events and sporting events we missed to attend Wednesday evening Bible class. The message we sent our children every time we missed a school band concert, vocal concert, or school sporting event was that God is more important than anything else. Every time our kids had to explain to the director of the school play or their coach that they would not be available to practice or perform on Sundays or Wednesday evenings, helped them to realize what kind of a commitment it takes to be a Christian. 

I do not regret all the school events we said, "no" too. We told our children from a very young age they would never be attending school dances. The girls would never be going out for cheerleading or any other activity that would require them to dress immodestly. Because we told them BEFORE those opportunities arose, the kids already knew they did not even need to ask. Of course many of their friends thought they were being so mistreated because they did not attend dances or go to the school proms. I don't think my kids missed out on much and I don't think they even believed they were missing out on much by the time these things came around. Children need to learn how to live in the world without being a part of the world. It can be done. 

2002 Visit
I do not regret insisting our children attend a Christian University, the most conservative Christian University we could find. We began to tell our children when they were toddlers that they would be attending this University. We took them there as young teens and they became familiar with the campus. We did not let them choose where they were going if we were going to pay the tuition. What are our reasons? We want our children to spend their first years away from home under the guidance of Christians, surrounded by like-minded peers. We want them to be at a place where the majority of students and all their teachers attend the Church of Christ. We want our children to be at a university where their classes begin with a prayer, where they begin their school day with the singing of hymns and a devotional in a worship setting. We want them to be able to go to their professors with religious questions as well as academic questions and get the correct answers. We want them to be in a place where they are privileged to have teachers like Dan Winkler and Loy Mitchell. 
2012 Graduate
 We want them to be at a place where temptations are fewer (not non-existent, but fewer.) I know they eventually have to be out in the “real” world (but better at 22 than at 18.) I know the tuition is double or triple that of a state school or a junior college. I know that we will potentially be repaying student loans when we are also paying for our nursing home (HA). This is not a post judging what YOU do or have done but a post about the things I do NOT regret verses the things from an earlier post that I DO regret.  I am not trying to bash state schools or upset anyone and hope that I do not. I have many relatives and Christian friends whose children are at State Universities.

These are some of the things I do NOT regret. These are the things I believe we have done right so far. Thanks for reading. You might also like to read: Don't Blink

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Sunday, March 16, 2014

Heart Attacks and Loose Teeth

Sydney has become more aware of her peers and their opinions this year.  Because of her lack of impulse control and her inability to determine right from wrong due to the Fetal Alcohol Syndrome (FAS), it can be pretty concerning. I always request that Sydney be exposed to positive peer models and the amount of time spent with children who have behavioral issues be minimized, but in a public school setting this is not always possible. Sydney has been acquiring lots of interesting knowledge this year to say the least. The school year began with her coming home with gravel in her pockets. She believed those ordinary rocks to be valuable.  It seems a boy on the playground told her they were fossils because they had little bits of color in them. When I asked what they were fossils of she explained the boy claimed they were the knee bones of Indians. That was the first week of school so I knew from the start it was going to be a very exciting school year. The same boy has given her a lot of “facts” about dinosaurs, insects, and weather that are not exactly accurate too.  I’m not sure if he believes the stuff he tells her or if he just makes it up as he goes along, silently laughing as my gullible daughter soaks it all up.

The most recent bit of misinformation that Sydney believes to be true is something she learned from a little girl in her math group. Apparently, a person can die of a heart attack if they are exposed to too much math in one sitting. This little girl claims her own dearly departed grandmother suffered “death by multiplication tables”. I’m having a hard time convincing Sydney that it couldn’t happen. 

Another tooth gone
The same sweet little darling classmate lost a tooth last week. Sydney could not be outdone. She came home and insisted she needed to take out a tooth. Unfortunately, there were no loose teeth in Sydney’s mouth. She wanted me to help her get one of her front teeth out and I explained it was a permanent tooth. She said, “I don’t mind. I don’t want that one.” It took two days of prodding and wiggling, but she found a baby tooth with just a little play in it and she got it out. It still had quite a bit of root on it and left a large hole but she was thrilled. She’d lost a tooth just like her friend. The reason she has so few teeth left to lose? This actually wasn’t the first time something like this had happened. In kindergarten and first grade the teachers had charts for the students to add a sticker to if they lost a tooth. Sydney loved the attention that came with putting a sticker on the chart so much she was willing to suffer the pain of pulling teeth that really were not yet ready to be pulled. The alcohol Sydney’s birth mother consumed while pregnant really did a number on Sydney’s threshold of pain.

Sydney has come home with some very entertaining stories lately. With help from her teacher, I’ve been able to unravel a few mysteries. Sometimes Sydney’s stories are like onions and I have to peel back a few layers to really get a good picture. Sydney and a friend were disciplined at school a couple of weeks ago for name calling in the classroom. The two girls had been picking on some of the boys. Sydney’s teacher wrote a note on the weekly calendar that the students bring home each week to let me know that Sydney had been in trouble. I never saw the note. When the teacher looked for my reply the next day, she saw it had been erased! I spoke very seriously with Sydney about it. Sydney claimed she did not erase the note. Her friend and partner in crime did it. I am pretty sure there is a “Leave it to Beaver” episode in this story somewhere.

Because of the name-calling incident, Sydney’s teacher decided the two girls would be better off sitting further apart and she moved their desks. Sydney confided to me right after school that day that the two girls had a plan to right “the injustice” of such a “cruel” punishment. They were going to DEMAND a meeting with the teacher the next morning and insist she allow them to be reunited. Sometimes it is very hard to keep a straight face when Sydney is telling me these things. I find third grade drama extremely funny. I could hardly wait to hear the next installment when I picked her up the following day. I had emailed the teacher to warn her of the coup attempt so she was ready for them. I so wish I could have been a fly on the wall during the girls’ plea for justice. Sydney never did understand why their demands were not met.

I’ve been overjoyed this school year because Sydney is making friends. Last year she was shunned by the girls in her class and bullied by the boys. This year she has had fewer of those sad sagas and is a lot happier. I suppose it could partially be the personalities of the different students in her class this year but I also see her maturing. She still has all the same disabilities but she is gaining some “street smarts” that she really needed. I know public school takes a mom’s innocent little five year old, exposes them to all kinds of words and ideas that they would be better off not knowing. I’m not really glad that Sydney or any of my other kids have ever come home to ask me what some filthy word meant. I’m not really happy that Sydney or any of my other kids have ever come home to tell me a filthy joke that they did not understand the meaning of. Those kinds of things I WISH I could have sheltered all my kids from.  However, by age ten, Sydney should have caught on by now that others do not always have her best interest at heart and that sometimes following other people blindly will get her into trouble. The FAS left her with so little impulse control, she has a difficult time thinking before she acts. If a classmate suggests an activity (even one she has been warned about), she does not (cannot) stop and consider the consequences usually. I believe she is beginning to develop some self-control that we have not seen before. So, I suppose when I count my blessings I should count her peers (even the ones with questionable intentions) as a blessing to us.

Here's a similar post if you want another great post: "Just Another Day in Paradise."

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