Autism in Our Home - Joy

At times, it is difficult to detect joy in our kiddo. Sometimes it is hard to figure out what makes him happy and what keeps him in what appears to be a storm. However, there are things that clearly put Colton into a state of pure bliss. On Saturday, Papa and Grandma took Colton and his cousins, Eden and David Jr., swimming. Can you see his joy in these pictures? He could live in the water. He loves it. He feels so happy when he is swimming, even if he is swimming alone. He will find friends and swim. Just swim.

When Josh's grandma died, her specially made organ came to our home. It is beautiful. It lights up and plays songs all by itself. It can also be played. Colton becomes quite fixated on certain things. The organ is one of those things. He is literally obsessed with it. For this reason, we have been a sign on it that reads, "Do not touch." Colton literally asks every single day, multiple times a day if he can play the organ. The answer has been been "no" except for once. Below is a picture of that once. Dad made the time to sit with Colton at the organ. It lit up, it played beautiful music, it soothed him and brought him peace and our boy was in Heaven in is otherwise chaotic Autistic world. Watching him for those moments brought gratitude to my heart and tears to my eyes.

Colton is generally a very happy kid. He likes to watch movies, play with Legos, play with stuffed animals, play games, and play the xBox/Wii/Playstation. He likes music most of the time. Sometimes it seems to be too much for him. Other times, he asks for the sound to be turned up. Colton likes to run and play with other kids, but generally kids who are younger than him by 5-6 years. Sometimes, though, Colton is just plain done, or is in what we call "another world." He is hard to reset, or to get him to focus. He tends to be far more frustrated during those times. Colton is very, very sensitive to others and how they might feel about him, but he doesn't always seem to understand how they actually feel or communicate with him. He loves when kids are nice to him or ask to be his friend. When joy enters his soul, the heavens open up!

Jordan High Preference 2015

Jackson was invited to Jordan High School's Preference dance. It was Saturday night. In eighth grade, he had a "girlfriend," named Kyanna. When we moved to West Point, they decided it was best to be friends since we were moving over an hour away. They remain great friends! It was fun that she asked him to the dance and that he was able to go. He had a great time! They attended her best friend's cheer competition for the day activity, then he came back to Papa and Grandma's where we were hanging out for the day. Josh helped him get ready for the big night, then he took him to the house where they were all meeting. They went to Archibalds for dinner, then to the dance. Afterwards, they went for ice cream. We picked him up at about 10 pm and headed home. He had the best time! I'm so glad that he has chosen great friends, and has kept friends from every place we have lived!

Autism in Our Home - Sensory Issues

Many people with Autism have sensory issues. Some may have a hard time with noise, others with sights, some with touch or the feel of objects, and even others with food textures. Colton is no different. Colton has issue with several things that pertain to his senses. *The first is sound. Colton does NOT like the sound of fireworks. This has actually intensified for him as he has gotten older. Even when we prepare him that they are coming and that they are going to be loud, he covers his ears, cries, and sometimes yells. This year, we will bring ear phones for him and he will sit close to me. There are other sounds that bother him. Sometimes basic sounds that don't usually bother him will set him off, such as his brothers singing or the sound of the windows being down in the car. I'm not sure what sets him off with sounds that 90% don't bother him and so it is hard for us to prepare him, or ourselves for these sounds. He doesn't normally react the way he does with fireworks, but he will repeatedly ask that the sound be stopped. Sometimes, just handing him a phone to play a game on will put him in enough of a "safe zone" to allow pretty much anything to go on around him. *We have not noticed any food textures that bother Colton, thankfully. He seems to do just fine with all food textures. *Feel. Colton does NOT wear jeans, or levi shorts. He is most comfortable in sweats and track pants/shorts. We have also tried cargo-type pants and shorts. He will wear them periodically, with our prompting, but he prefers the other materials. Colton also insists on hiking his pants and shorts up so far that the waistband is at his breastbone. Josh has patiently worked to correct this, since it could very well be causing harm to private parts. Colton is getting better at fixing this habit on his own, but frequently needs prompting to pull them down to his waist. He has repeatedly told us that he feels more comfortable with them up to his breastbone and, at time, will become very emotional when prompted to pull them down. *This doesn't have anything to do with sensory issues, but if we don't prompt Colton to shower and change his clothes, he simply won't do it. It isn't because he doesn't want to, but rather because he just NEVER thinks about it. Frequently, we have found that he goes to bed in pajamas, then goes to school in the same pajamas, and sleeps in them again the next night if we don't prompt him to change. *Feel again. Colton has always found his right ear to be a source of comfort. When tired, overwhelmed (and trying to deescalate by himself), or emotional, he will rub his right ear between his pointer and middle finger. When he is doing this, he is most definitely in a different zone and it is a time that I try my best to leave him alone and continue to try to find his "happy place." This is, what appears to me to be, his best effort at finding his base line all by himself. Often times it's a signal that he is tired and doesn't have much fight in him, so he is usually peaceful at this point. **Human Touch. Colton is overly affectionate with people, again a boundary issue. He will hug anyone, even strangers. We are working hard to remind him to ask if he can hug people before he does. Some people, like his Aunt Tiffany and Aunt Carrie, have given him MVP permission, where he knows he can hug them at any time. We still try to remind him to ask them so that he doesn't get out of the habit. He loves to hold hands with me, to be close to Josh all the time, to hug anyone and everyone, and to kiss me goodnight every night. This is a great quality, but a boundary/safety issue with an Autistic kiddo. We have to continue to be diligent in ensuring that he, and everyone, is safe.

Baby Factory, No Baby

Meet my sister, Carrie. She is married to my brother, Brandon. They live in Farmington with their dog, Durbin, who is the size of a human male. They are going through a fourth lost pregnancy. They have had three miscarriages and one ectopic pregnancy, all in the first trimester. Carrie has had one operation, which we hoped would be the end of their difficulties. It wasn't. Obviously.

Then, there is me. I couldn't stop having children! If you haven't heard, I was on birth control with all four pregnancies. I didn't even have a menstrual cycle between the three youngest. I just kept having babies. Now, it wasn't easy. The pregnancies got shorter and shorter, with my youngest being in the NICU for a few weeks due to prematurity. I was in a terrible marriage. I was not emotionally stable. I was not physically well. Kaydon was on all kinds of medical equipment, with home health care around the clock. I was the only one working in the home to support us. It was less than ideal, to say the least. Yet, I couldn't stop having babies. I never once had a miscarriage, or a lost preganncy.

I have thought about this a lot the last few days. I feel a lot of guilt. I feel guilty that it was so easy for me to have babies, and yet my brother and his wife can't catch a break when it comes to having a family. They are financially stable, they have a good home, great jobs, physical well-being, etc. I don't know why Heavenly Father works the way He does, but I know that He knows what He is doing. My life, obviously, is much better now. My children are growing and doing well. We have been blessed infinitely. We have a good, stable home, with a loving father at the head. But, so does my brother.

I pray that by brother and sister will be blessed with a family, with a home full of children and noise and messes and joy. I pray that they will be comforted through this difficult process. And, I pray that I will no longer feel guilt. I pray that I will forgive myself, for whatever I did wrong, and be able to comfort them through this very, very hard time.

Autism in Our Home - Perception

Isn't this picture great? This is Colton and his cousin, Miss Eden. Eden doesn't see anything "wrong" with Colton. They are good buddies! Eden isn't the only one who doesn't see anything "wrong" with Colton. In fact, anyone who looks at Colton with their eyes only will see nothing "wrong" with Colton. Colton looks like your average 11 year-old boy. He doesn't have any equipment that would cause people to identify him with a disability. He doesn't have a service dog. He doesn't walk with a limp. He doesn't require assistance with walking or sitting or standing. He doesn't have any facial features that would trigger an automatic reaction in someone who might determine that he is disabled. This can make things even more difficult for Colton and for our family. Now, PLEASE don't judge what I am saying here. Again, this is autism in OUR home. This is OUR story, OUR perception, OUR journey. Because Colton "looks normal," it isn't until he starts to talk, or gets fixated on something, or acts inappropriately that people start to judge. And because he "looks normal," people automatically determine that he is weird or odd or out of control or immature. People automatically assume that he has bad parents, that he is spoiled or just the opposite - that his parents need to be more patient. Yesterday, we were waiting for a restaurant to open so we went next door to a sporting goods store, just to walk around. There is no such things as just walking around with Colton. Josh or I have to keep our eye on him at all times. Within minutes of entering the store, I had to have my hand on his arm and then in his hand. Before we had even been in the store for five minutes, I had to take him back outside. This is not a five year old child. This is an eleven year old, turning twelve in a few months. People stare. It's hard. When we got to the restaurant, he wanted to ask random people random questions, which is normal. In order to keep him "at bay," I handed him my phone for him to play Solitaire and the circle game. That kept him busy for about ten minutes (which is AWESOME!) and then we had to find something else for him to focus on. He got up on his knees, turned around in his seat and faced backwards to watch a show on a tv screen that was right in front of him, had he been sitting on his bum, facing forward. Again, people stared. We are learning to just go with it. He wasn't hurting anyone by sitting on his knees, backwards in his seat, looking up and over the other booths. Last week, we went to Red Robin for dinner. THREE families who were seated next to us asked to be moved within minutes of sitting down. As his mom, I want to go to them and thank them for not saying anything directly to us but to explain that he has autism. I ALWAYS feel like I have to explain myself because by looking at him, you can't tell there is a significant disability! I feel like I need to tell everyone that he does, in fact, have a disability. But, I don't. I choose instead to focus on the family sitting at my table. We are learning to pick and choose our fights. We are learning what works and what doesn't work. We expect a lot of Colton. He has the same responsibilities as the other kids do. Sometimes, well most of the time, he goes about accomplishing them in a different way and at a different speed and that's okay. This is a marathon, not a sprint. Now, off to the next adventure.

My Sweet Becca

Please meet my Becca. Becca worked with eLearning for years, then she had this crazy desire to be a mommy. :) She is mommy to Evan, Bradley, Leah Grace, and Ezekiel. Evan is 3, Bradley is 2, Leah Grace is in God's arms right now, and Ezekiel is two weeks old! Two weeks ago, Becca was 29 weeks pregnant with Zeke when she was taken to the emergency room by her husband. Becca had fainted four times in three days and had been showing some signs of forgetfulness and lacking emotion. After tests, it was discovered that Becca had an enormous brain tumor. Zeke was taken by c-section, and portions of the cancer were removed from her brain concurrently. The amount of cancer that was taken from her brain is about the size of her husband's fist. It is an aggressive cancer. At that time, Becca was given 12-18 months to live. That prognosis has been upgraded, thankfully, since then, however Becca will still die from this cancer. Zeke is doing amazing. If you don't believe in miracles, you will now. Zeke is on room air. He has an NG tube, currently, but the next three weeks he will be taught to suck, then suck and swallow. His brain is clear of brain bleeds, and his natural heart murmur is expected to close on its own. Zeke has no chance of having had the cancer spread to him, as the cancer is considered intrinsic,or contained to one area. Becca is home. She is never alone. Her husband is on leave until at least the middle of April. Grandparents are helping with Evan and Bradley. She is taken to be with Zeke every morning. Becca will begin chemo and radiation concurrently in two weeks. This will be a one year process. This buys Becca more time, and hopefully keeps the cancer at bay for a while. My Becca is beautiful, smart, fun, kind, compassionate, infectious with her happiness and faith. She is upbeat always. She believes that she is a daughter of God. I do as well. She believes in miracles, and is completely aware that she is witnessing them in her own life. I do as well. If you have a few extra prayers, send them her way. She has quite a difficult path ahead of her, as do her family members. I love you, my sweet Becca.

Proud

Last night, I went to these boys' bedrooms with the sole purpose of telling them that I am proud of them. I am. I am so proud of these boys. We expect a lot of our children. They work hard. They have responsibilities. They are held accountable for them. They are not paid an allowance. They do their own laundry, iron their own church clothes, empty the dishwasher, fill the dishwasher, clean their rooms, etc. They work hard at home. They also have their school work. And, currently Jackson is working on wrestling. I went down to Jackson's room last night to tell him goodnight. He was folding his laundry and putting it away. I noticed a sign that he made and posted on his wall. It simply said, "I will wrestle varsity. I will be a wrestler." Jackson has never wrestled. Josh is his coach at Central Davis Junior High. They have been conditioning for the last week and a half as a team. Jackson is working hard. Very, very hard. He needs to learn how to wrestle. And, I know that he will because he has goals and he works hard to accomplish them. Braxton works hard in very different ways. He helps around the house above and beyond his responsibilities. He helps without being asked. He works hard to make good choices. He works hard to be happy. Sometimes, that takes work for all of us. My boys, all of them, have been through A LOT. Like, a whole lot. Despite that, or perhaps because of that, they come out on top always. By that, I mean that they work hard to make good choices and to do what is right. I am so proud of them.