Monday, July 28, 2014

No More Silence in Waiting Rooms

It's really interesting when everything seems to come together in your life, just when you need it. Lately I have been feeling really bitter and down about everything, and how stressful things are with the kids. Yesterday in church, I felt like everything said was meant for me to hear, and I just love it when that happens! A talk in sacrament meeting about using social media to share the gospel (and uplifting, positive things), a lesson in Sunday School about raising children and remembering how they are sent to us from God and that we have a special relationship with them, and then a lesson in Relief Society (the women's class) about how the cure for bitterness is gratitude. All of these things really made me think once again about why I have been given such unique children, and how I can use the talents I have been given to help others.

So I studied the talk on gratitude again, and realized that I needed much more gratitude in my life in order to get through the trials I face with my children. And I kept thinking about the last post I wrote about trials, and how everyone has a story, and how I said that there was too much silence in waiting rooms. And I thought about how I have always had an interest in writing and sharing stories. In high school, I wrote for the yearbook staff. In college, I came close to either majoring in print or broadcast journalism, but chose English instead, because back then I didn't want to have to apply to a competitive college program. (If I could go back, I would have gone for it!) Regardless, my desire to write is there, and to share inspiring stories of special needs children.

Today I took Nathan to get a hearing test, and I knew I would be surrounded once again by people who are all facing challenges with their children. So I opened my mouth, and started talking to people around me, and was so glad I did. One family there actually has kids that attend my kids' school, which is strange because this doctor is about 35 minutes away. So I talked to hear and she told me a little about her oldest son's challenges, and now I have another mom to lean on for support. Another mom to my left had a girl with a cleft lip/palate, and we talked about the challenges we faced with surgeries and doctor visits. Both moms were more than willing to share their story, just like I am. It is so true that sharing your challenges really strengthens you. It's like free therapy! And hearing their stories made me stronger as well.

As I was talking to the mom and aunt of the girl with a cleft lip/palate, I kept thinking in the back of my mind, I should ask if they would like to share their story on my blog. But then they got called back before me, and I just didn't have the right opportunity. Then I got called back, and I wasn't sure if I would see them again. But as luck would have it, they came out right after I did, and we said our goodbyes, and I still wasn't sure if I should ask these complete strangers if they would like to share their story. So as they were outside in the hallway waiting for the elevator, I knew if they got on that elevator I would lose my chance forever. So I ran out there really quick, and asked if they were interested in sharing their story on my blog. With great enthusiasm, they agreed! We exchanged info, and now I have another mom who I can lean on for support, and who will be able to share her story here soon.

What I also realized after being so bold in opening my mouth is that I felt all of my bitterness disappear completely. Many of you have probably heard how when you do service you forget your own problems and cares because you are focusing on someone else. Well, it was very similar to that, because showing interest in someone else's child and learning from their life story was like doing service. When you talk to someone who has gone through a difficult time with their child, and you just listen and let them tell their story, you are serving them and allowing them to lift some of the burdens they feel. I wasn't focused so much on my own problems in that moment--I was able to hear from someone else who had gone through a very similar situation to mine. The strength we gained from one another was immeasurable. And if I could describe how I feel right now, it is grateful. Grateful that I opened my mouth and let other moms share their challenges with me. Grateful that I now know two more moms that can be a support.

So I have made a decision: no more silence in waiting rooms. No more moping about my situation. With all the doctors I see on a regular basis, there is no end to the people I can talk to and learn from, and then hopefully share their stories with you. It's time to have an attitude of gratitude, and to look past my own problems and talk to others. Plus, I can put my journalism skills to work again...

Friday, July 25, 2014

The Story of YOUR life

I say this almost every day: "I can't handle my life."

It's usually said at the end of the day, when things get super crazy with the kids, and I am about to blow my top. Or it's said on those days where there is just way too much to get done, and it never does. Or when all the kids are cranky at once, and it's loud and chaotic. Or when Julianna has another major tantrum.

But really, the meaning behind this sentence goes much deeper. All those little things that are just everyday stresses are nothing compared to what I am really facing: I have a child with autism (and a host of other things on the spectrum.) I have another child now entering the early start program, speech therapy, and feeding therapy, and possibly more surgeries in the future. And throw into that my middle child, who has overcome most of his health challenges, but is still your typical stubborn 7-year-old boy. So yes, most days I can't handle my life. But I keep going, day after day, because it's all I can do.

Trials are inevitable. Challenges will always come, no matter what we do. After Nathan was born, and I had to face even more challenges ahead, I began to see something that I hadn't before. Something that my younger brother said to my mom after Nathan's birth. "Everyone has trials. Kera's trials just have to do with her children."

This is the story of MY life. And every single person has challenges in his or her life. My sisters and I were able to go somewhere together, just us, while I was in Utah. We collectively agreed that we each had very challenging things that we are struggling with, just all different. Does it matter whose challenges are greater? Not really. But what did help is acknowledging and sharing those challenges with each other, because by doing that, we strengthened one another and bonded in a new way.

You all probably know by now that I go to the doctor, a LOT, with my kids. This week was no different. While at the children's hospital waiting room a few days ago, I looked around at all the people in that room and just wished I could go around to each and every person and ask why they were here. What was going on with their child? How were they dealing with the challenges they face with their child? In just one waiting room, I could have written dozens of blog posts about people who are facing major challenges with their children, much more than I am facing. I could have gained so much strength from those people, if I wasn't so occupied with my own toddler. It made me think that there is too much silence in waiting rooms.

I still remember taking Nathan to the craniofacial team last year when he was a baby. In the waiting room that day, I could tell that many of these children had such difficult things to face. I even noticed one mother look at Nathan, and I could tell she was questioning why I was there. On the outside, Nathan looks and acts completely normal. Her child had a facial deformity. I felt for this mother, and many of the other mothers and fathers in the room. Again, I wanted to know their stories, and how they were coping.

My major trials come as a result of what my children have been diagnosed with, what they have to struggle with, just like all those other parents in that waiting room. Their trials are my trials, too, because I am their mom, and as a mom, you have to try to help your children overcome their problems. You have to try to make them happy, to live as comfortably as they can, to learn new things, to face people who might belittle or bully them, to give them the best quality of life possible. Every parent should try to do this, whether they have special needs children or not.

What I have been realizing lately, too, is that because my children present so many challenges, it is very difficult to love being a mother. I want to love being a mom, but to be honest, I don't always love it. I feel like I am in survival mode. All of the what if's and uncertainties ever present in my situation with my children often overpower me, and take away from the happiness I want to feel. So I have to seek out happiness in those little moments that come each day, when Blake says something really intelligent or caring, or when Julianna surprises me by a making a humorous remark, or when Nathan learns a new word or sign. The stress of my life is not going to go away, but I can't let it overpower the joy that I want to feel. I can have joy in this journey I am on with my children. Every single person can have joy in his or her journey through life.

How boring it would be if we didn't have trials. A good movie has to have conflict and resolution in order for it to be interesting and worthwhile. So it is with our own lives, our own stories we are writing. Without conflict or trial, we would not be learning anything. We would not be changing or evolving, improving or expanding. While in Utah, I had the great opportunity to meet up with an old friend, and we of course caught up on our lives. I felt like I was talking too much about my life, and I apologized for this. But she really wanted to hear what I have been going through, and I was happy to share it with her. And she shared her story. And we gained strength from on another.

Trials are just part of your life's story. How we face those trials makes a huge difference in how our story will be written. When all is said and done, I want my children to know that I loved them, that I did everything I could to help them through their own challenges. And that as they faced those challenges, I was right there with them, cheering them on every step of the way. And that I did all this with joy, not anger or defeat. That I loved being their mom.

What is the story of your life, and how are you writing it? Don't be afraid to share it with others.

Sunday, July 20, 2014

Our trip to Utah, and what I learned about Julianna

(Before I share our experiences on our trip, I want to make a little disclaimer: We had so much fun being with family! We live far away from most of them, so to be together is a huge blessing. But every time we take a trip as a family, we learn a lot about Julianna and how we can make things better. So this post is mainly about the challenges we faced, and how we tried to overcome them.)

We left July 3rd for Utah, to see our new niece get blessed, and to visit my family there. This time we broke up the drive and stayed the night in St. George. Besides the difficutly in getting Nathan, our 19-month-old, to sleep that night (we made a makeshift fort over his crib by shutting the comforter in the door and weighing it down on the other end with our cooler) it was a great idea. We were able to go swimming as a family and have a break before we finished the drive the next day.

We arrived at my mom's house to drop off some things and say hi to one of my sisters and her kids, and then headed up to meet Joel's sister's family and see our new niece. They got us into FantasyCon in Salt Lake City for free, so we got to see some interesting displays, people, and a giant dragon. Julianna even waited in line with Joel to shoot some arrows at a target. Then we headed to one of their relatives' houses to hang out and watch fireworks.

The word "fireworks" used to fill Julianna with dread. We have spent the last many years doing fireworks at Joel's mom's house, not too far away. I remember when she was around 3 or 4, she would sit inside behind the sliding glass door because the sound was too loud, and the bright colors scared her. Finally, just a few years ago, she was able to move outside and watch, but with much caution. This year, she couldn't wait for the fireworks, and stayed out longer than anyone else watching them. I love seeing progress.

Another thing we did in Utah was hike the Y mountain. Joel and I both graduated from Brigham Young University in Provo, Utah. The nearby mountain has a big Y in it, and a hike that you can do to get there. I don't remember it being very difficult or long, so we decided to try it with our kids. Nathan literally cried the first 10 minutes straight as we situated him in the hiking backpack and got started. Once we got into the hike, Blake stayed with Joel and Nathan, and it was Julianna with me. Before long, we were lagging behind them, and Julianna complained of her legs hurting, and wanted to stop at every switchback to rest. There were times when she wanted to stop, but I kept encouraging her. When we made it to the top, it was a big sense of accomplishment for both of us! The way down was not any easier, because she felt like she was sliding down the trail at times, and her shirt sleeves were bothering her and causing her to stop and scream about it. But we survived, and it was a great experience.

Another day we decided to go to a nearby water park. I knew that this would prove challenging, and I was completely stressed about going. Nathan has the tubes in his ears, which means he cannot get water in them, and lately he has not wanted to wear his ear plugs in the water, so I had no idea how I would avoid getting water in his ears. Julianna, as I shared recently, just finished swimming lessons, and made big gains, but the crowds, people splashing, and the noise would be a challenge for her. She immediately decided she was going to wear a life jacket once she saw them hanging up, and she mostly wanted to stay in the lazy river, and run in the water spraying area.
Our passes included a free pizza and drinks. Now most of you know Julianna is on a gluten free, dairy free diet, and pizza clearly has both. As I waited in a very long line to get the food, I thought, I'll just take the cheese off, and she can eat the crust. I got closer and realized, duh, the crust has gluten!! I began to rationalize, thinking that eating pizza just this once would be okay. Then I realized I did not have my debit card with me, and there was no way I was standing in that long line again, so it made even more sense to just have her eat the pizza. But then, when I went to order, I suddenly had the idea to ask if I could substitute two of the drinks for french fries. Unfortunately, they could not do that, but they said if I went to the pick up window, I could order the fries there instead of waiting in line again. So that's what I did. People are really understanding when your children have special needs, I have found. And to end the day, Julianna went down one of the smaller slides! Progress! (she is on the left, Blake on the right, below) And Nathan did not get water in his ears. Success!
The very next day, my dad rented a giant 20-ft waterslide for the backyard and everyone was having fun on it. Julianna went down before I even got out there, and told me she was brave and did it! I couldn't believe it! But the slide was scarier than she thought, so Joel spent the rest of the day convincing her she could go down one more time. She did, with a bribe to get a dollar store prize. Yes, this is how we get Julianna to do hard things. It works, most of the time.
The last experience I wanted to share was our trip to the zoo. Almost my entire family was able to go together, a rare experience. I was dreading it, knowing how challenging it would be with Julianna. Right when we got to the front gates and were waiting for everyone to arrive, there was a little pond where people had thrown pennies in. I gave my kids and some of their cousins a penny, and everyone threw theirs in, except for Julianna. She said, I want to save my penny, because I can buy something in the zoo instead. I told her she could keep the penny, but that there was nothing in the zoo that would cost one penny. So we went in, lasted no more than 2 hours because of the extreme heat, and as we were all leaving, she kept asking me about spending her penny, and that she wanted to look at the toys. I told her there was nothing she could buy with a penny, and that we weren't going to let her look because she would want to buy something. This resulted in a huge tantrum, the biggest I've seen in a long time, so big that people were stopping and starting, whispering to each other, shaking their heads, etc. I told her none of the cousins were getting anything, so it wouldn't be fair for her to get something. I ignored her, I tried to help her, and in the end, I had to drag her out of the zoo kicking and screaming, all the way to our car. It was awful. But this is the chance we take whenever we go to a public place. Sometimes things go really well, but usually we are faced with major tantrums. This is our life. I don't think my family even knew how bad it could be, because she is really good at hiding it most of the time.
Julianna with Blake and their cousins Will and Bradley.
Later that day, as we were packing our car to leave, she had another major tantrum. My mom and dad came running out, because they thought she was really hurt. I broke down crying, because after over two weeks, I was done! After some comforting words, we were on our way home, and I was looking forward to being there again. Familiarity is good for Julianna.
I sometimes think I have valid reasons for never taking Julianna on family trips, or to water parks, or hikes, or zoos, or any public place, really. I know that tantrums and explosions are inevitable. And this time I had to factor in the diet and making it work while we drove, and at my parents' house, too. I could have easily thrown in the towel and said, sorry, we aren't coming, it's just too hard. But so far we never have. And we will continue to make the trip, because I feel that every new experience helps her to grow, to develop new skills, to expand her horizons. I would be a horrible mom if I didn't continue to push her to do things that are out of her comfort zone. No matter how much it stresses me out, and to be honest, my stress level is always extremely high, I will push forward. She is part of our family, and part of our life--nothing is exempt from her, and the greatest thing is, she wants to be a part of it all, too!  

Tuesday, July 1, 2014

Guest Post: Max

Today we get to learn about Max, who was diagnosed with autism. I met his mom, Tiffany, through my specialreds facebook page, and we have become virtual friends! I really admire all she is doing for Max, and what a wonderful mom she is. I hope you enjoy hearing their story.

Max was born after a long 54 hour labor.  He had a large head, chubby little body, and a very small amount of blond hair.  He looked exactly like his dad.  He was a very quiet baby.  Hardly cried and slept through the night at a very early age.  He was a tank and was never sick his first full year of life. Still to this day he has only really been sick once and has had two ear infections. 
Max was a big boy.  By his first birthday he was 28 pounds and 31 inches.  
He stayed chubby and happy until he started to walk, and then he stretched out although he is still thick and tall.  At 2.5 he was 38 pounds and 38 inches.  
Max was a little late developmentally but we were never really concerned.  
At 11 months we went on a trip to California.  Grandma Strong has an amazing collection of Disney CARS.  Max was in heaven.  That was the first time he really played with so many cars. He would play for hours.  Lining them up, ordering them, and specifically looking at how the wheels moved.  Everyone thought it was amazing how he would spend so much of his day playing with and looking at cars.  He wouldn’t want to do anything else. 
For his first birthday we had a huge party.  It was fun for everyone except Max.  He was so overwhelmed.  When we sang happy birthday he just cried and cried, and wouldn’t calm down. Ever since then any time happy birthday is sung he still cries.  
At around 14 months Max started walking.  He would run on his tip toes.  He loved being mobile, but still didn’t want much to do with anything besides cars and the occasional train.  Max wasn’t talking hardly at all.  He signed, but no words.  He would yell to get our attention or have a major break downs.  This is when I started to wonder if he couldn’t hear.  I looked up online about hearing loss or deafness in one or more ears.  At his 18 month check up we had his ears and eyes checked.  No problems.  The doctor told us boys talk later and to just keep reading and working with him at home.  So that is what I tried to do.  My teacher in me came out, I made flash cards, got books upon books, looked up apps on our iPad to help him talk, and we started watching the show Word World on PBS.  He wanted nothing to do with his mom and her crazy ways, he wanted cars.  This was upsetting for the teacher in me, I wanted him to like learning, I wanted to teach him.  He wasn’t talking he was frustrated, he would yell at us and cry.  He wouldn’t point to things or ask for help, he would just yell or cry.  Will and I were also getting frustrated.
At 18 months Max was able to go to Nursery.  In our church Nursery starts at 18 months and is for two hours each Sunday.  Basically the toddlers play with toys, sing songs, and enjoy being social for the first time in a huge group setting.  In Max’s nursery class there were about 10 toddlers, and 4 adult leaders.  Max would go and play by himself with cars.  During the transition from toys to singing time there was always a meltdown.  The nursery leaders would try to calm him down, but he ended up having to be taken out and calmed down by Will or me.  This happened week after week.  When we would look at him while he was playing, he wouldn’t even notice the other kids, he would be by himself playing with cars.  When singing time started he would go into a corner and rock and sway by himself.  This started to concern me.  But honestly I kept being told by others that “it is normal, social situations are hard, he will learn to play with others, and don’t worry.”  Max was my first child, so I was not aware of things I should be concerned about, but in my heart I knew something wasn’t right.  
At Max’s 2 year old check up I was 33 weeks pregnant with our second son.  I had a rough pregnancy and I was excited to be done with being pregnant and give Max a little brother to play with.  Dexter was born three weeks early on July 25th, 2013.  
Having two boys at home was fun.  I was so excited to see how Max was going to react to Dexter. But he pretty much ignored him.  His sleep got worse than it had been in months.  He was lethargic during the day and taking longer than normal naps.  Will and I tried so many things to get him to sleep better at night, even taking away naps.  But the weeks of bad sleep turned into months.  With a newborn and a toddler who wasn’t sleeping it became a whole family problem. Max was staying up until 2am.  Something wasn’t right, we had to get help.  
Around my birthday in September I started having a lot of anxiety about Max going to preschool.  I knew it was a year away, but I started getting so worried.  How would he be able to play with other kids?  How would he eat while he was there?  How would he go to preschool without his Dad? Potty training, Heaven help me?  I started to think this just wasn’t going to work.  
Max was also displaying other concerning behaviors.  He was having tantrums.  Not the typical 2 year old tantrums but ones that would last for hours.  He would hit his head against the door, floor, and anything hard.  He would throw everything in sight.  He would ONLY calm down for Will.  Will learned early on that he liked to be held tight and rock in place.  That was the only way he calmed down.  Max only wanted Will.  It was heartbreaking.  I was his Mom, why couldn’t I give him enough love to calm him down?    He also couldn’t be in large groups of people without having a huge breakdown.  He still wasn’t talking much at all, saying maybe 10 words.  And if he gained a new word he lost one he had the day before.  Max also loved watching running water and the fan, something I thought only newborns did.  He still wasn’t pointing when he wanted something, and was getting more and more difficult to parent.  

Food was another whole issue.  He drank milk and apple juice.  He lived on those two things.  And it wasn’t for lack of trying.  We offered him everything, he just wouldn’t touch it.  He sometimes would eat WHITE bread, WHITE cheese, Popcorn and randomly raspberries.  But those were seldom.  It was heartbreaking.  People would always say to us “WOW Max must have a great diet and eat a ton, he is so big.”  And we would shake our heads and explain that his diet was milk and apple juice.  I am pretty sure people thought we were lying.  
Around November of 2013 I started doing research on Autism.  At first I would make mental notes of what was going on with Max.  Then I started seeing correlations of what was going on with Max and what I noticed online. One of my good friends worked for the Alpine School District in Utah, specifically she worked with the Autistic Kindergarteners.  I called her.  I cried to her.  I told her my concerns.  She was so loving and supportive, but encouraged me to get Max help and to go and talk to our pediatrician.  And that conversation was the turning point for our family.  I told Will my thoughts and feelings and he was too on board.  We also told our parents, and they too noticed things in Max that was concerning.  

At Max’s 2.5 year check up Max took the MChat.  It is a preliminary test to see if your child might have Autism.  Max didn’t pass.  We then took him to Primary Children’s Hospital in Salt Lake to get more help, diagnosis and a plan to help Max learn and thrive.  
After a lot of prayer, love and support from friends and family, and a lot of information given to us by doctors, speech therapists and psychologists we finally felt like we had a direction for Max.  We finally felt that after months and months of wonder, we had some answers.  

Max has Autism. He is still Max.  He is still my little boy who loves music, Phineas and Ferb, cars, trains, and Winnie the Pooh.  Max is very loving and gives awesome hugs.  Max is going to thrive, and be successful.  He isn’t broken or sick.  He has Autism.  I don’t feel sorry for him and don’t want others to feel sorry for him either.  What I want is for people to be accepting, to try and understand him, to realize that he might not learn or develop like the typical child, but he will learn.  

"A child with Autism is not ignoring you, they are waiting for you to enter their world."
Will and I have decided to start a separate blog for Max.  We want to post things that have helped us, and how Max is progressing.  We hope others can find it helpful and informative.
Max's Blog: