Dear Family:
I have felt impressed to write this for several months, however, it took me some time to "process" the information that I have learned and to accept it -which I am still kind of working on at this point. I felt that I needed to share some information that may or may not be useful because what I am writing about is genetic. The reason that I have done this is so you may have a better understanding of what we have been dealing with for years and why we may handle things a certain way. I know that Travis is more understanding because of what we have learned and that I am still in the process of understanding myself better as well and why I do some of the things I do. Perhaps some of you have already done a lot of research and tried different methods of dealing with the issues that have worked for you. In sharing my perspective, I hope that maybe I will be able to help someone else or maybe you will share things that have worked for you that will help me and my family. Therefore, please bear with me as I explain how Travis and I got to the point where we are at and what things have helped our children-and me.
Years ago, when we found out that all of my brothers and dad have Tourettes Syndrome, I immediately did some research on the subject. What sticks out in my memory is that many who have Tourettes also have anxiety/depression, about half have ADD or ADHD, and many of them have OCD.
A few years after learning about Tourettes, Nat was very angry all the time for no particular reason. It was so bad that our home was "turned upside down" because of it. I remember thinking that I must be the worst mother in the world because I could not figure out how to handle him without becoming extremely angry myself. He was about 7-8 years old. I was pregnant with Clarissa at the time and thought to myself, why did I think I could bring another child into this world when I could not handle my oldest very well. I regret being so impatient with him and frustrated with him. It finally got to the point where Travis and I agreed that it was causing so much stress at home that we prayerfully decided that we needed counseling. I wondered if his anger was his way of expressing his anxiety/depression which turned out to be correct. We asked our wonderful pediatrician for recommendations and he sent us to Dr. Steven Gentry (who happens to be good friends with the Larsens). He helped Nathanael deal with his feelings in a more appropriate way. We liked him because he used the framework of the Gospel to help Nat. Nathanael improved greatly with his anger issues and I also learned how to handle my frustration with him a lot better. I thought that we could just move on from there and all would be well.
However, a few years later, Nat's teacher called Travis and I in and told us that he was sitting in class but not participating and not turning in assignments, etc. She asked me if Travis and I were fighting at home and told us that she thought that we must be doing something at home to make him so depressed. I was shocked that she thought that it was our fault. We again took him to receive some counseling and he improved again. We felt that now we knew the tools that would help him with some of his issues.
As he grew, about every other year Nat's grades would take a nose dive. I couldn't understand it. He is brilliant and should be doing extremely well in school. He did really well last year and I thought he had finally figured out what worked for him and how to organize himself. However, this year was the worst that it had ever been. In junior high, the teachers were willing to work with us but this year, Nat was taking 4 AP classes that if you turned in an assignment 1 day late, it was 1/2 credit and if you were later than that -no credit. He would do the assignments and then "lose them" or forget to turn them in. I was extremely frustrated with him and could not understand how you can do an assignment and forget to turn it in. Then, he missed several after school choir rehearsals. His grade obviously dropped. He explained that he knew the music and did not realize that the rehearsals were worth points. What??? Usually, it is very clear that you need to be there and that it counts toward your grade. How could he be attending classes and not know when things need to be turned in or what is going on?
I would pour out my heart to Heavenly Father to help us know how to help him do better so that someday he could provide for a family and fulfill his priesthood responsibility. I felt impressed that we did not have the "whole story" and that something else must be going on besides the anxiety/depression. We talked to our doctor and I explained all that we had tried to do for him for all these years and what help he had received, etc. He told me that he felt that we were addressing one problem- the anxiety but that he felt that Nat had ADD. I never thought that Nat had that because he wasn't "hyper". He is quiet in class and doesn't get up out of his seat, etc. I did not realize that ADD is a lack of focus and being able to finish things or follow through, etc. Our doctor felt that he needed medication and recommended that we talk to a psychologist.
We had to fill out a lot of paperwork before we met with her and Nathanael had to fill out a packet for himself. As he was answering one part of the packet, it was obvious to both of us that the questions were trying to determine if he had ADD/ADHD. We laughed because it was obvious that he does have Attention Deficit Disorder. We thought that he would get on some medication and all would be well.
However, when we met with the psychologist, she asked Nat about some of his answers in another section. She was wondering about him having to eat his food in a certain order, having to pull on his clothes to have it "feel right", and having to finish certain activities even when it is causing conflict-like finishing a song on a piano even though we need to have scriptures and prayer. She explained that she felt that he did need medication but that she could not give him a prescription because not only does he have ADD but he also as OCD (Obsessive Compulsive Disorder) and if she gives him a stimulant, it will make his tics worse and put the OCD into overdrive. She recommended a psychiatrist that specializes in this area at the University of Utah.
We then scheduled an appointment with Dr. Michael Johnson who is an expert in this area. We again had to fill out a large packet of information and included in that packet, we had to answer "yes" if any family members exhibited certain traits. I ended up answering "yes" for my side of the family a lot-unfortunately. As we talked with Dr. Johnson, he told us that it was very clear what was going on with Nat and that he had some answers for us. He seemed to mostly talk to me because a lot of these traits are from me. As I listened to him, I thought, "Did I create these children myself?" because so much of it was so like me. Nathanael does not have full-blown Tourette's because he does not have a vocal tic -like clearing his throat. However, it is a Tic disorder which is just a very mild form of Tourette's and he has all the other things that go right along with Tourette's like ADD and OCD.
Nat's brain is wired a little differently than others. All of these disorders come from the basal area of the brain. The biggest thing we learned were the symptoms of OCD. I did not realize he had OCD because I do the same things and did not know that it was a kind of odd. The biggest revelation for me personally was that I have OCD much more than I realize. He said that if a woman has brothers with Tourette's, it is likely that she deals with the same issues but that she does not express the "tics" and reasearch suggests it is because of my hormones. Wow. Some of the OCD symptoms are eating your food in a certain order, making sure your clothes feel "just right". For example, Nat, Zac, and I have to pull our sleeves or "shrug" so that they rest on our arms just right. My pants have to sit on a certain spot or it feels weird, so I have to adjust them often. The seam in Nat's socks used to really bother him. Nat has to finish a song on the piano or a video game. He has a hard time stopping even when it is time to do something else. I have to finish the dishes, or cleaning the bathroom-even if it makes me late. My hair has to be just right or it drives me crazy-so sometimes I am late because I am taking too long to do my hair. I know it is ridiculous-but my brain is telling me that it needs to be perfect. Dr. Johnson explained that often, people with OCD are trying to make themselves or their world "perfect" -which is impossible. For Nat and Zachary, things have to be done a certain way and be in a certain spot. It does not help to hurry them-it just causes contention. If I "make" them hurry or not do things a certain way, it does not show them that I am in charge and not spoiling them, it just causes their anxiety to go through the roof-it does not teach them a lesson.
I like things with balance and symmetry. Dr. Johnson told me that a lot of people with this disorder like things to be perfectly smooth, etc. He knows of clients who will varnish a table and if there is one tiny little bubble that no one will notice, they will still start over or throw it out. I used to get frustrated with Nat for not straightening up his trophies on his shelf. He finally told me that he does not deal with it because there is an odd number of them and there can't be symmetry-so he ignores it.
Dr. Johnson also explained that there have been brain scans showing that people like me use more of their brains doing simple tasks that are similar to those who are working on a big project. For example, when I am doing dishes, I am using the same amount of energy as someone else who is working on a large project for work.
One other big symptom is not being able to transition as well as others or handle a change in schedule, etc. For example, Nat used to have a "melt down" when I would pick him up from school and tell him that something had come up and we had to go right away. He used to complain and tell me that I should have told him way ahead of time-which I couldn't always do because that is not life. We are not always in control of things and we do have to learn to adapt and "go with the flow" sometimes. I must admit that I struggle with that still a little bit.
Basically, we had only been dealing with one issue with Nat and not the other things that are causing problems. Dr. Johnson felt that Nat would be very successful and be fine. He told us that the "magic number" for children to start having problems is 7-8 and then peaks as a teenager at 15-16 but then starts to settle down about 18 and on. This has been true in my little family.
Nathanael is on some medication right now to help him "settle his mind" so that he can focus and the anxiety is lessened so that he is improving a lot with his OCD. Dr. Johnson also explained that a lot of times, these children are obstinate and very difficult to deal with -especially for the mothers. I was kind of relieved to hear that and I must say, Nat has been a little more agreeable as this medication is starting to work. He is not so irrational and he seems to "hear" what we are saying better. As we talked with Dr. Johnson, we recognized very clearly symptoms in each of our children.
Lindsay Kaye was about 7-8 when she started complaining of headaches and stomach aches. She would cry as we were getting her ready for school because her stomach hurt. She thought that it was the food making her sick and so she stopped eating as much. She started to lose weight and then one day, I went out to the van and in the dirt she had written, "I hate food". That was a huge red flag and we took her to see Dr. Gentry.
She has general anxiety and her body was dealing with her anxiety by giving her migraines and stomach aches. He taught her some things to do to help her recognize that food was not the issue and to cope with her anxiety more appropriately. We have since used these same tools on all of our children-except for Zac which I am sure will use these as well. She has been doing relatively well.
However, because of what we have learned recently, we know Lindsay also has OCD. She expresses hers a little differently. She has to wash her hands at least two times when she washes her hands. She has a certain number that has to be repeated and that she counts to or has to start over. (She does this in her mind-we don't hear her counting). Her OCD causes her to be obsessed with getting top grades. She also feels that she has to be "perfect" in what she does.
I felt this way as a teenager and always felt that I fell short. I did okay until the last few years where my insecurities and need to be perfect have come back. I recognize that a lot of it is irrational and that no one is perfect, but it is still difficult not to expect a perfectly clean house among other things.
In discussing Lindsay, Dr. Johnson advised us to watch her and make sure that she is okay when something bad happens. It doesn't have to be a huge thing, but teenage girls (or women like me) may become severly depressed over things that are not as serious as other things and may even become somewhat suicidal. I feel bad to admit that I have personally had thoughts that my family and friends would be better off without me over things that are not that important in the grand scheme of things.
Lindsay still has stomach aches and she is having a harder time dealing with them right now because she is in that "peak age" that Dr. Johnson told us about. However, she now knows that there is a light at the end of the tunnel and that she won't always feel this anxious. There may come a point where she will need medication as well to help her get through -we will prayerfully consider what is best.
Ethan has the least issues of all my children. He does have a couple of tics-including a vocal tic. However, he does not have ADD/ADHD or OCD at this point. He does have general anxiety however and his stomach aches started about 8 as well. He only gets them once in a while now and seems to be able to cope effectively when he does have a lot of anxiety.
Clarissa does not really seem to have OCD, but she seems to have a little ADD although not to the extent that Nathanael does. She also has general anxiety but hers is expressed a little differently. She does the the headaches and stomach aches but she also expresses great concern over things that are unlikely to happen to her. For example, she heard a child downstairs on the play horse and it was making a repetative squeaking noise. She worried that it was a bomb-and she was totally serious! She worries about natural disasters like earthquakes, tornados, etc. We don't generally tell her about things in the news because she worries that it will happen to our family. There are times that things have happened that she will hear about from someone and so we try to tell her those events in a way that she won't be completely frightened by it. She worries about my cholesterol- because she knows that I have to work at making sure it doesn't get out of control. She reminds me of that when she thinks I have eaten enough chips or other foods. She has become so anxious at times that she has literally made herself vomit. We are trying to teach her the tools that we have learned but it is a process and takes time.
Zachary is a little Nathanael. I do feel tired sometimes in dealing with his OCD tendencies-just like Nat. However, because I know that he is not just being difficult but his brain is telling him that it needs to be just right, I am more patient and less frustrated than I was with Nathanael.
Most of our kids issues come from me. It is obvious and I have actually felt a lot of guilt and sorrow because I feel like I have given them these struggles and that they have a hard time sometimes because of me. It is also difficult to hear that your child is not "normal" and that you, yourself are not "normal". It is difficult to admit that I have mental illness. Knowing this has been helpful but also made me feel "odd". It plays into my OCD of trying to be perfect and here is a huge example of how not perfect I am. I am still processing everything and trying to not blame myself for every imperfection in my children. I know that it is a bit of a "pride" issue and I am working on that. Lest you think I did create these children on my own (even though they all look like Travis), Travis does have a bit of OCD as well. It just is expressed differently. He feels a great deal of anxiety when we give away things to the D.I. This is actually a form of OCD. He just does not have it to the extent that the people on "Hoarders" do-but it is very difficult for him-even though he knows that the items will really help others. I have to kind of hurry the bags out the doors before he goes through all the bags.
So why am I telling you all of this? These traits are genetic and I am hoping that no one else will have to suffer all these years. I felt so bad that Nat was almost 17 years old and we are just figuring out the extent of the issues that he has had to deal with all this time. Had I known some things that I know now, we could have alleviated his suffering and I would have been more patient and understanding with him.
Every child is different and every family is different. Therefore, it is important to prayerfully consider how best to help each individual child. What works for some may not work for others. Not every child needs counseling and not every child needs medication. As you can see, some of our kids have it worse than others. After talking with Dr. Johnson, Travis felt more understanding. He realizes that our brains are wired differently and that we are not being difficult and irrational just because we are stubborn. He now understands that we do have a physical problem and that the symptoms are behaviors and that is how it manifests itself.
I know that I am sounding very negative right now, and honestly, sometimes I am angry that we have to deal with this. However, Heavenly Father has inspired us to try to help our children deal with these issues appropriately. Some of our children needed counseling. Talking to someone else about their anxiety that was more objective and not so close to the situation was extremely helpful. Some tools that we learned from Dr. Gentry have helped most of my children. He first had them name the anxiety. Lindsay's name was "The Nerve". Clarissa has named hers "The Trouble". He emphasized that we cannot let this bully us and control us and that our minds are more powerful and stronger than we may realize. We can retrain our thoughts by not giving in to the thoughts that would cause our bodies to give us headaches or stomaches. For example, Lindsay says that her stomach hurts and she does not really want to eat. She still must eat and keep herself healthy. When they start feeling the pain or sickness coming on, they need to do something that makes them happy. Lindsay used to like to watch The Disney Channel -although we don't let her watch it constantly-that creates another problem. Lindsay really likes to take hot showers and that seems to help her relax. Clarissa likes to read and listen to the sound of running water. We bought a "Sounds of Nature" gadget that she turns on at night. For me, certain types of music seems to calm me down as well as uncluttered spaces. The latter is very difficult because I do have 5 children and they don't necessarily value organization and neatness as much as I do. This issue is something we are continually working on, the balance of my need to have order and their needs to be children and feel happy at home. As our children have gotten older, we have come to realize that they need physical activity. That does not mean that they need to play competative sports but we have found that with the oldest three so far, consistent physical activity helps them get some of those anxieties out. Ethan told me recently after playing futsal that he felt so good and at peace after he ran and played. Dr. Johnson also told us that research has shown that meditation really helps which is something I have yet to try. These are a few things that have helped us -recognizing that as we pray for inspiration and also strength to carry these burdens placed on our backs, we will become stronger and we know that it is for our own good.
Dr. Johnson also reminded us of the gifts that they have because of this trial. He mentioned how many are gifted baseball and tennis players (this one seems to have alluded our little family). Many are gifted musicians. They pick up on instruments fairly quickly and easily. They hear the rhythms easier. He also mentioned that they are gifted dancers. Many are great actors and performers. He explained that while they seem to have these natural gifts, the ones with OCD actually build upon that because they want it to be perfect and so they will practice it over and over to get until they are incredibly good at whatever they are working on. Nathanael would play a song over and over again to get it perfect. When he would make a mistake, he would start over until he didn't make that mistake anymore. He is now actually very good at playing the piano.
It is difficult to admit our weaknesses and to admit that we have these issues to deal with. However, I still have high expectations for our children. I expect them to make good choices and behave kindly and respectfully to us, their church leaders, and their teachers at school. I expect them to work hard and try to accomplish their goals. I know that despite these difficulties, they can become great people who are strong and good. I am grateful for their teachable personalities. I am also grateful to be able to tell them to look to the wonderful examples that they have in the family who deal with similar issues. I know that we are not given anything that we cannot handle and that sometimes we need to pray to have the strength to carry our burdens and not just to have them taken away (even though I wish that would happen sometimes). I don't have all the answers and I still get frustrated and Travis still sometimes has a hard time "getting it" but we are trying and if I can help one other person-this letter was not written in vain. I love you all and are grateful for your good examples and I feel blessed to be related to you.
Cathy
.jpg)
