Julianna's first home run?

Yesterday's softball game started like any other we've had so far this season. Julianna practiced with her team before the game. She went up to bat the first time, was able to hit the ball off her coach's pitch, run to first. It was pretty typical, and I was still very proud of her for getting out there and participating with a real team. But then things changed the second time she went up to bat...no runners on any bases, other team up by 10 runs...

She was able to hit the first pitch, but the ball flew up near her face, which scared her and she began to cry. Her coaches came to her aid, and Joel and I encouraged her to try again from the bleachers. As this was going on, the other coach ran out to huddle with his team. I just assumed he was getting a few minutes in with his team while Julianna was being helped. So, once Julianna was ready, she hit the ball again, after a few pitches. And suddenly, the pitcher, who had played well the whole game, seemed to have trouble getting the ball, and Julianna was safe. We were proud! It's not been uncommon for players to do this because they want Julianna to get to first, and I'm totally fine with that. But then she overthrew the ball, so Julianna ran to second base with her assistant coach at her side. We were even more excited! This doesn't happen often! And then suddenly, all the girls on the team were having trouble getting the ball to the bases. So Julianna ran to third, and by this time, my excitement instantly changed to sadness. Joel looked at me and asked what was going on. I told him, "They're doing it on purpose!" And instantly after I said this, I put my head down and began to cry, covering my face with my hands. I could feel the other parents staring at me. Joel began to show some irritation toward the umpire, who apparently thought this little home run was not a good idea, and she smirked and rolled her eyes at the other team's parents. I never saw Julianna run over home plate because I could not stop crying. All around me, I could hear some cheering, but also a lot of confusion, like people weren't sure what just happened, or why. I couldn't control the tears, and had to step down from the bleachers and walk away to regain my composure. I'm sure most people thought these were happy tears. But they were not happy tears...

So why would I feel this way after just witnessing my daughter with special needs get her first home run? Simply put: she didn't earn it. It was given to her, like a gift of charity from the other team who wanted to do a good deed. No doubt the coach wanted to teach his girls to show kindness to someone who is different. And I know that that is a very noble thing to do. It might make him feel like he's created one of those movie moments, where everyone in the crowd is touched by this kind act of selflessness. And I am certain some were. But you know what? Not every kid gets a home run, special needs or not. And if they do, they earned it, fair and square. That's when the real magic happens.

Julianna has earned every single skill she's accomplished thus far in her life, and most have been through tears, tantrums, and screaming. She's learned things that I thought she would never learn. Riding a bike is a perfect example. Joel taught her to ride about 2 1/2 years ago, during the winter break after Nathan was born. At the time, we both thought we were crazy for even trying. She clearly lacked motor skills and coordination. But Joel didn't give up on her, and neither did I. She did it, it wasn't handed to her. We didn't give in and buy some special bike that attaches to an adult one because we assumed she would never learn, and believe me, I had already looked into this option. We simply believed in her. And she did it, and it was a breakthrough.

I guess people don't see my child this way. They don't see that she has amazing potential. That coach has no idea how much progress she's made during this season. He only saw that she was a little shy and uncomfortable and needed help playing. But the fact that she is playing at all is so huge for our family. And that she's hitting the ball by herself, real hits. That's what we celebrate. That's what brings me joy. What she does, not what is given to her. We want to teach her to fish, not just give her one. We want her to be treated like the other girls on the team. What this little home run did was only accentuate her differences, while some might not have even noticed any before. Her teammates might not look at her the same now. Even her teammates have never gotten a home run! Not one single girl this entire season on any team has scored a home run! So why did this coach think he needed to do it for Julianna?

I acknowledge that one of the purposes of special children is to help others learn to show charity. In fact, that's exactly what this coach did. He taught his players how to be selfless and show kindness to a child that might not always fit in with the other girls. I completely respect that. However, because Joel and I had no idea it was going to happen, and neither did anyone but the girls on the team, it created a strange feeling in the crowd. It was like we wanted to cheer, but it was only half-hearted. At least that's what it felt like to me. How can you cheer when you know it's not real? Maybe if Julianna functioned clearly at a much lower level, and we all knew that this moment was meant to bring her joy and excitement, but Julianna is very high functioning. She has been playing just fine, hitting the ball on her own. However, don't get me wrong, I do feel grateful for the kindness of this coach. I would have appreciated him letting our team's coach know and then he could get our approval before doing something like this. Then at least we could have been prepared.

After I gained some composure, I went to talk to Julianna's coach, and he said, "Some home run, huh?" as he rolled his eyes. I could tell he was not happy they did this. And my tears began to flow again. The other coach disagreed, and said it showed good sportsmanship, and will help her try harder because now she's experienced a little bit of success. I told them that I didn't want anyone making things easy for her, and that I just wanted her to be treated like the other girls. I didn't want her to be singled out, or babied. I wanted her to earn everything she gets, and that the other coach should have approved this with them, and her parents first. The head coach agreed, and I had to walk away in tears again.

While crying behind a tree, one of the moms from our team and also a member of my ward at church came over to see if I was okay. She told me we were amazing parents for having the courage to put Julianna on a regular softball team, and that other people are learning so much from this experience. She told me not to worry about that mean umpire, but focus on how this home run might have made Julianna feel. Until this point, I had only really considered how it made Joel and I feel. But once I thought about Julianna's feelings, I realized she was right. Does how I feel, or Joel feels, really matter at all? Yes, I think to a degree. But what matters more is how Julianna felt in that moment, because this moment was mostly created for her. So once I regained my composure again, I was able to ask Julianna how she felt when she got a home run. She said she liked it, and didn't say much more than that. Not the answer I was looking for, but this is typical Julianna. She's just going through the motions of the game. I think she knows she got a home run, but really, it wasn't that life changing for her.

At the end of the game, Joel told me our coach didn't make a big deal about Julianna's home run when talking to the team and parents. This made me very happy to hear. He knows that she didn't earn it, and the other families from our team know that, too. One of the moms from the other team came over after the game and said she took a video of the whole thing, and asked if she could send it to me. I agreed, and thanked her. I haven't watched it yet.

I guess what I've learned from this experience is that I still have lots of hope and faith in what Julianna can do. That's why I wasn't happy that this home run was fabricated for her. It would be different if I knew she would not progress more than a certain level, but I know she will continue to progress. And I also learned that when she is singled out like that for being different, it really hurts me, deeply. I know she is different, and has challenges, and I guess seeing her being singled out only reminded me again of how people perceive her. I know people will not always understand her, and will do charitable things, and that is fine. But as her parent, I have a completely different view. I know she is capable of doing and learning many things, and I have pride and joy in seeing her accomplish them. I will try my hardest to help her learn everything she possibly can. And when she does, these will be the movie moments for me, because they will be genuine. And as for her, maybe she had her own movie moment while running those bases. But I will never truly know, because she often cannot communicate her feelings.

Regardless, Julianna doesn't need to get a home run for us to be proud. All we care about is that she does her very best. What she has done during this softball season has been inspiring to us. Only two more games left...we can do this!

Progress

It is always a blessing to see progress in your children. To see them learn a new skill that you helped them achieve after working so hard. This is even more so true with children on the autism spectrum. Because I have no idea how far Julianna will go or what she will be able to accomplish, I just have to assume that she can do everything. If I don't, I could be depriving her of something that will help her to reach her potential. She won't reach milestones at the same time as other kids, but that's okay. So far as I have raised her, I have always been guided to know when the right time is for certain milestones. And recently, she has accomplished a HUGE one that we have been working on for YEARS, and I could not be happier. Something that other moms probably don't have to teach their kids because they learn on their own by watching and observing, but for Julianna, it took LOTS of practice: taking a shower.

As you might already know from reading my blog, Julianna does not like water. She'll tolerate a bath, but when it came to pouring a cup of water over her head, she would plug her ears and close her eyes really tight, and I would have to make sure I didn't get any water on her face, especially in her eyes, because it really bothers her. Sensory issues are real! Every once in a while, I would force her to take a shower, because it's pretty much a life skill. And when I say force, I mean it. She would go in kicking and screaming, and when it came time for me to wash her hair, it always became a fight. She would be screaming, and I would be getting wet because I'd be halfway in the shower with her, and it would always be a very unpleasant experience for both of us. But I knew that we had to keep trying.

One day last fall, it occurred to me that her hair was making it very difficult to learn this shower thing, so I decided to bring her in for a haircut, and we cut it VERY short. I knew this would be the only way to help her learn to scrub her hair and get it all clean. After that, we kept trying showers at least once a week, but no progress was made at all. I was getting frustrated, and wasn't sure what to do.

In February of this year, the supervisor from her ABA therapy provider was here for a visit. She asked me if there were any new goals that we needed to start working on. I had never mentioned showering before because I assumed they couldn't help her do that. But I brought it up anyway, and said I really want to help her learn this skill, once and for all. So she and I brainstormed, and she said she would write a social story about the steps of taking a shower, and incorporate her favorite characters in the story (My Little Pony/Equestria Girls at the moment.) She would have her therapist read it at the beginning of every session and then talk about the importance of learning to shower. I thought it was a good idea, but really didn't think it would work, but at this point, I was willing to try anything. I've used social stories with her in the past to help learn other life skills, and they are helpful, but not always successful. Usually the little social stories just end up being books that Julianna liked to look at because her characters were in them!

Well, soon after her therapist starting reading the story to Julianna, Julianna asked me if she could start taking showers again. I of course agreed, and in the beginning would try to help her with the hair washing part. After just a few weeks of showers, I knew she was ready to try on her own. I told her she could print out two My Little Pony pictures if she did it all by herself. Between the social story and this reward system, it was enough to get her to do it. And ever since then, she has been able to shower all by herself! There are times she still has a little soap on her hair, and about once a week I go in there and really scrub her hair just to be sure, but she is doing all the steps by herself! This life skill can be checked off the list! The only problem we have currently is she likes to take LONG showers. So I have a kitchen timer in the bathroom and when it rings, she knows she has to start washing off. Success!!

I just love seeing progress. To see Julianna reach a huge milestone is so rewarding. It means that she really can do anything, just on her own time table. And it means I will never stop believing in what she can do. She will get to where she is supposed to be, and I am glad I can help her along the way.

Julianna's first two softball games

After having about 4 practices, we were told last Monday by her coach that her first game would be two days later. When I told Julianna about it, she was surprised, and I asked, "How do you feel?" She said, "Nervous." There wasn't enough time to hold another practice before the first game so we got there this past Wednesday, and it all hit me, really hard. This is happening. She is going to play in a softball game. What am I doing? Why am I doing this again?

The day before the game I texted the coach to find out if she would still receive help from the assistant coach like she had been getting during practices. We hadn't even discussed what would happen during the games! So he talked to the higher ups and they agreed to let the assistant coach shadow her. I felt better. Julianna felt better, too.

As the team warmed up before the game, I began to feel those tears welling up, but I kept pushing them back. I am not going to cry. Everything is okay! Joel was coming straight there from work so I had Blake and Nathan with me. I watched as the other girls threw the ball to each other, throwing so fast and far, and watched Julianna throw just 10 feet away to her coach. Of course this made me doubt again why I was doing this at all. She's doing her best, I kept telling myself. I wished I could find a way to build her confidence, to help her feel like she could do anything the other girls could. For some reason she doesn't think she can, and this causes the coaches to want to help her even more. But I know for a fact that she is capable of doing it, and I just hope that by the middle to end of this season, she will be able to do everything on her own.

Right before the game started, all the coaches and umpires gathered up to discuss the game. I could overhear the assistant coach telling the umpire that they had a special needs child on their team and she would need extra help. The umpire and other coach agreed to this without hesitation. I could feel the tears welling up again as I listened. I'm not going to cry!

Her team was up to bat first, but the first three batters struck out, so they went quickly to outfield where Julianna played centerfield and was shadowed by her coach. Around this time, I was greeted by the head of the softball division of our local rec center, the same man I had to reason with almost 2 months ago at registration. He asked me how everything was going so far. I told him I loved the coach and so far she was doing okay. He was happy to hear it. Soon after that, Joel got there, and I told him I kept feeling like I wanted to cry. Of course, right after I said that, I lost it completely, and had to walk away for a minute to gain my composure. I couldn't really pinpoint why I had to cry, but the tears kept coming. I have never done anything like this for Julianna. I have always been afraid to, and here I was, facing my biggest fear for her: participating in a real team sport. It took me about 5 minutes before I could come back to the field and watch again. A ball was hit to her in centerfield, and she ran to get it, and threw it to 2nd base! She did it, with her assistant coach's help. But she made a play.  I was starting to feel a little better.

The next inning, Julianna was able to go up to bat. Her assistant coach made sure she stood in the right place and held the bat right. Her coach impulsively decided that he wanted to pitch to Julianna, and the other team was okay with this. He even said, I'm going to give her 5 pitches. Again, no complaints from anyone. She didn't hit the ball her first time.
 
The rest of the innings nothing really happened. At the end of the game, the coach picks two players of the game to hand out. Julianna was one of them. She was so excited, and also could not wait to get her team snack for the first time! She has been jealous of Blake getting these for years! We were proud of her, and I was happy they gave her the award the first game, so she wouldn't keep asking when she would get it! Also, at the game, there was a girl around Julianna's age playing with some other kids and she had Down syndrome. I wasn't sure who her parents were, but I knew I needed to meet them!

Saturday morning she had another game, and during warmups they practiced batting. She was able to hit the ball a couple of times! I told myself this time it would be easier, and I wouldn't have to cry. Once again, I heard our coaches tell the others about Julianna's special needs. And again, no disagreements. I am glad that so far, everyone is so open about it.

Julianna's team was up to bat first, and this time she got to hit during the first inning. It seemed like everyone at the game was sitting in silence, waiting to see if she would hit the ball. On the 5th pitch from her coach, she hit the ball, and her assistant coach grabbed her hand and ran to first, and then to second. The tears came immediately. That was my girl, in a real softball game, and she just hit the ball all by herself. In another inning, she hit the ball on the 2nd pitch, but it ended up being a foul ball, and she didn't hit any more after that, so she went back to the dugout.

During this game, I got to meet the mom of the girl with Down syndrome, and we had a nice talk. She told me she also cried when Julianna hit the ball, and noticed how quiet it got when she was up to bat. I feel blessed to know another mom who can somewhat relate to my situation, and look forward to getting to know her and her daughter better.

I am so proud of Julianna for doing something so brave. I know she is still nervous, but she is doing it. And as for me, I don't know how long it will take for me to get past the tears. Maybe I never will. Doing this is also brave for me, because I have never put her so far out there, in front of people. I had no idea what an emotional experience this would be for me. And I don't know what the future games will bring. Her assistant coach said not every team will be as agreeable, so there might be times where Julianna will have to do everything on her own. But this is what I want her to do anyway. I know she will get there. It's going to be a learning experience for everyone involved. I just feel grateful that people are compassionate enough to want to help her succeed, because she deserves it!

Guest Post for World Autism Day: Parkyr

To celebrate World Autism Day, I asked a new friend of mine, Megan, to share the story of her son Parkyr, who has autism. I admire her positive outlook and strength while raising her three boys. You will learn a lot from her honest, genuine words about her son, and how she feels about being his mother.

What has your experience been like trying to have children? And how was your pregnancy?

I have always loved children, so naturally after I got married I wanted to immediately become pregnant and begin my family. Over the next 3 years following the wedding, minus the first 7 months my husband was deployed in Iraq, it was a very devastating and discouraging time. I had a total of 7 miscarriages. I felt as though becoming a mom was just not going to be in the cards for us.

On December 22, 2008 (I remember the day because it was the same day a friend had given birth to a precious baby boy), I took a home pregnancy test…and it was positive! I was excited, and scared all at the same time. I tried to stay positive, but with my previous miscarriages this was difficult. So I went through the motions, went to the appointments, and although there were a few scares, our baby continued to grow and thrive. I was hospitalized a total of 6 times due to preterm labor, and I had spotting throughout my entire pregnancy and was put on strict bed rest. The last trimester I had to take a trip to the hospital every week to have a stress test performed on the baby. The last 2 weeks up until I gave birth I had to go in 2 times a week!

On August 26, 2009 (officially made it to 38 weeks), I gave birth to my 1^st son, Parkyr. After he was delivered I waited to hear that “cry” everyone expects to hear that reassures you your baby is healthy. They laid him on my belly while they wiped him down and cleared his airway with the suction. As I watched, in awe at this beautiful human being that I had just brought into this world, my stomach dropped. My baby’s color wasn’t “normal;” he started to turn a blueish color. The nurses were wiping him down but no one seemed to realize that my baby was turning blue. I finally yelled out to them that something was wrong. They stopped wiping, looked at him, and then in a blink of an eye they scooped him off my belly and put him into the baby bassinet and quickly left the room. I practically yelled at my husband to follow them. I sat in the delivery room for nearly 4 hours before I saw anyone or heard any news of how my baby was doing. Turned out he swallowed some meconium, was put on oxygen for about 2 hours, and had to get a chest xray, which came back clear. He was fine after that and we both went home the next morning.

What was Parkyr like as a baby?

Parkyr was a very independent baby and never wanted to be held (he would get really fussy if you held him for more than 20 minutes). He slept through the night from day one. He always did his own thing and would always want me to be near him so that he could see me, but he never demanded the one-on-one attention that most babies do. When he was tired he wanted to be laid down, not held. I would literally poke at him while he was sleeping after an hour or two so that I had an “excuse” to pick him up; all I wanted to do was snuggle and love on him, but he just wanted his independence. It wasn’t just with me, it was with everyone, but of course I took it very personally and felt as though he didn’t “like” me.

Parkyr was delayed in most of his milestones. Sitting up didn’t happen until he was about 8 months—we always joked that it was because he had “daddy’s big head” and it took a little longer to gain the muscle mass to support such a large dome. Parkyr was also a dare devil; he had no fear or feelings of limitations, so when he became mobile, let’s just say “Mommy had to start dying her hair more often to hide the grey!” He has always had a VERY high pain tolerance…what kid (or adult for that matter) could break his leg, cry for about 5 minutes, and then be smiling and happy as can be after that? That would be Parkyr, climbing on a coffee table and stepping off of it, landing with all his weight on his foot, resulting in a hairline fracture of his tibia just above his ankle.

He had many ways that he would take out his frustration or anger. He would sit down and fling his head straight back, or bang his head on the wall, or get on all fours and bang his forehead into the ground, or fist up his hand and punch the side of his head. Since day one, Parkyr has always done things “Parkyr’s way,” and when he did something out of the norm we always just chalked it up to that. Being on the spectrum honestly never even crossed my mind.

What was Parkyr like in his toddler/preschool years?

As Parkyr got older, his personality just blossomed. He loved going to the park, and immediately would find just one kid to shadow and play with. Although, looking back now, he never really interacted on a personal level, like trying to get information about the child he chose to play with. It was always, “Hi, I’m Parkyr;” “I like to swing;” “Let’s go on the slide;” “I have this… I have that… I like this,” etc. Potty training was a nightmare, but he finally conquered it after countless attempts. Talking was the most noticeable delay he had. He would learn new word(s) every day but would only say them once then never repeat them again. He conquered two-word sentences after his 3^rd birthday.

There were times during playdates that I would see other kids his age a lot more “advanced” in their development, which made me a little worried, but I always reassured myself that “all children develop differently,” and with that the doubts disappeared.

 

 

When did you first begin to worry about him? What did you notice?

I first began to get worried when Parkyr began kindergarten. He wasn’t making any friends, he was noticeably struggling with the school work, his meltdowns were becoming very intense, and he wasn’t excited to go to school. (What child IS excited to go to school?) Well Parkyr USED to be; when he was enrolled in Pre-K he would throw a fit when I picked him up because he didn’t want to leave, and he would scream and shout because I didn’t take him to school on the weekends. Little things started adding up; I chalked it up to just moving cross country and he hadn’t yet “adjusted” to the move.

When did you receive a diagnosis? What has happened recently for Parkyr?

The past 6 months of his life have been a blur. It all started with a note that showed up in the mail one day from his school saying that a meeting was set for me to attend with the principal and vice principal. When I entered the meeting I was thrown off guard; luckily I had brought my mom with me for moral support. In the room was the vice principal, Parkyr’s teacher, the school psychologist, a speech therapist, and another lady that I didn’t know. They came out and bluntly said that they believed Parkyr had autism, high functioning, but autism none the less.

Of course my first reaction was to immediately be put on the defense…denial. After their “diagnosis” was verbally given each one began to explain why they believed it to be true. As they began talking and describing Parkyr’s reactions, it was as though a light bulb went off. “You know what, maybe they all are right.” All the “Parkyr’s way” shenanigans that I just wrote off to a strong willed/stubborn child were starting to make sense. They gave me the number to the local regional center, and told me to set up an assessment.

How did you feel after receiving his diagnosis? What help were you able to obtain?

“This can’t really be happening!” As a mother, you want your children to excel, and become healthy, happy, and successful adults. I didn’t know how this diagnosis was going to affect my son. After doing lots of research, speaking to friends who have been through this, being introduced to new friends, and being pointed to the many resources available by my CDE teacher (who is an early interventionist as well), I was finally able to breathe a bit.

My son now has an IEP at his school; he attends speech therapy 2xs a week at school; he has a therapist and psychologist he sees at least 1x a month for both; and he gets 9 hours a week of in-home behavioral therapy. I don’t know what the future will hold for us all, but I can tell you that being proactive and having a strong support system is absolutely vital. It doesn’t matter how strong you think you are, you NEED to reach out to a support group and talk with other moms going through this, maybe even seek counseling for yourself. Whatever works for you that will grant you a little R&R.

What challenges do you face with Parkyr?

Raising a child on the spectrum is very challenging; there are a lot of ups and downs. The “ups” are monumental and help keep you afloat during the “downs.” The most challenging thing for me is going out in public. Think back to your last shopping trip…there’s always “that mom” who has lots of kids, all yelling, screaming, and crying, throwing a fit because they want a candy or toy, and for at least a split second you think to yourself, “she’s in over her head,” or, “those kids are spoiled,” or, “my kids would never behave THAT WAY.” Well I’ll admit it: I’m “that mom.” I have 3 boys, ages 5, 2, and 1. Parkyr gets very overstimulated when he’s around lots of people and gets very anxious in enclosed areas. Enter in the dreaded check-out line: my worst enemy and the cause of the most intense meltdowns. I have done many things to try to prevent such happenings but nothing works, and since dodging the check-out line and walking out of the store with a cart full of food is illegal, I have to grin and bear it. The looks and comments I get are very hurtful, but I ignore them and try to not let them get to me. My son, although a handful, is perfect just the way he is, and if people want to make assumptions or question my ability as a parent then let them waste their own time. My kids and I do not owe anyone an explanation.

 

 

What have you learned as his mother?

During this journey, I have discovered a strength inside me that I didn’t even know I had. There have been many days that I didn’t want to get out of bed, or that my mind would be racing because of everything on my plate. The millions of phone calls, the countless doctors appointments, the therapy sessions. The endless fights because homework needs to finished but never did get finished because Parkyr “HAD” to finish his Lego invention that took him 3 hours to build, take apart, build again, throw across the room, build, etc. I have felt as a mom of 3 demanding boys that I was being pulled in way too many directions, and I didn’t know how I was supposed to juggle all of their needs: my work, going to school full time, etc…something had to give.

Then to add icing to the cake: during my middle son’s 2 year check-up his pediatrician told me that I needed to contact the local regional to get him fully assessed as well. What were the odds of having not one but two children on the spectrum? I’ve learned to become even more creative, because let’s face it: if a child doesn’t want to do something, they won’t do it. Well, this same concept applies to children on the spectrum, only it is multiplied to the umpteenth power times infinity—NO JOKE! Re-direction and positive reinforcement (in the form of little $1 store party favors) have been my “go to” for getting my sons to listen, and to start/finish something, but even those have their limitations and are not always effective.

As I have noticed the changes in Parkyr, even before the diagnosis, I’ll admit I made a point of staying home. It’s not like I was avoiding my friends, but I was. I would get the mean stares from complete strangers, and I didn’t want to get stares from friends. Public meltdowns were, and still are, my worst nightmare. To be honest, I’ve had full on panic attacks just THINKING about going grocery shopping. I’ve gotten more open to start joining civilization again, because I know now and understand why Parkyr’s meltdowns happen, and if I stay proactive, I can’t cut out meltdowns completely, but I can at least make the melt down less intense, which makes a world of difference. I’ve had a few conversations with some friends and have told them that Parkyr was diagnosed with ASD, ADD, ADHD, and ODD, and some replies I got back were, “but he looks so healthy,” or, “he doesn’t look autistic.”

What advice would you give to moms who have just had children diagnosed with autism?

Be proactive! Don’t wait for “them” (doctors, therapists, schools, etc.) to call you… you call them…A LOT. Get a binder and start writing notes, names, and numbers of everyone you have to call, or have called.  As a parent you want to get all the help possible for your child and if you don’t stay on top of calls and remember all the people you need to contact, you will “fall through the cracks.”

Find outside support. Families are amazing support systems…take advantage of the open ears, and arms, BUT find a support group that has parents who are going through this or have already been on this road. They’re amazing resources and can steer you in the right direction.

Time out: This journey is completely exhausting, mentally, physically, and emotionally. I’m not even taking into account the daily struggles having an autistic child brings to the table. You have to take care of yourself BEFORE you can give your child 100%. This is the big reason I went back to school at the local college. I also take time for myself every night after all the kids are in bed and I watch the latest TV show. Being able to sit or lie down, uninterrupted…it’s a little piece of heaven.

This is a very long, difficult, complicated, frustrating, eye opening, amazing, and most rewarding journey you’ll ever be on or take. Stay positive, and know that in the beginning there is A LOT that is thrown your way and expected of you BUT also know that everything will level out and become less hectic and chaotic. I don’t know what the future holds for my family, but what I do know is that all my boys are loved unconditionally and that will never change no matter what is thrown our way.

                                                                          

I Am a Defender of "The Family: A Proclamation to the World"

In 1995, a very important proclamation was read to members of the Church of Jesus Christ of Latter-day Saints called "The Family: A Proclamation to the World" by the current prophet of the church, President Gordon B. Hinckley. The words of this proclamation are sacred, and a testament to the world that prophets do receive divine revelation in our day to help people come closer to God. Now 20 years later, the leaders of the Relief Society, Young Women's, and Primary organizations of the Church celebrated this anniversary by centering their talks on this important document last night at the General Women's Meeting. One leader in particular, Sister Bonnie Oscarson, challenged every person to be defenders of the Proclamation to the Family and boldly declare its teachings. I felt inspired to do just that, because I know that this proclamation was a revelation to all the world on the importance of the family. Sister Oscarson asked us to focus on three parts of the proclamation: marriage between and man and woman, elevating the roles of mothers and fathers, and acknowledging the sanctity of the home and homemakers.

First, marriage between a man and a woman is ordained of God. In the very first paragraph of the proclamation, it reads:

"We, the First Presidency and the Council of the Twelve Apostles of The Church of Jesus Christ of Latter-day Saints, solemnly proclaim that marriage between a man and a woman is ordained of God."

I know this to be true. Right now the world thinks differently on this issue. But I know that God's laws do not change, and that if we are to see families thrive in our society, this important commandment needs to be obeyed. The proclamation further states:

"The family is ordained of God. Marriage between man and woman is essential to His eternal plan. Children are entitled to birth within the bonds of matrimony, and to be reared by a father and a mother who honor marital vows with complete fidelity."

I know that this is God's plan for his children on the earth. And that's all I'm going to say on this topic!

Second, we need to elevate the roles of mothers and fathers. I loved the story she shared of her daughter discovering it was career week at her child's school, and how she submitted an application to present for the career of "mother/homemaker." After the school did not call her, she called them, and asked if she would be permitted to attend. She was, and her presentation was such a big hit with the kids that the following year she was asked to give it to 6 classes. She elevated the role of mother in this simple act. As mothers we are asked to do a lot for our children. Even if I had a job outside the home, parenting would not be my secondary job, it is my primary job. And really, when it comes down to it, what I am doing all day, every day, for my children and family, is small acts of service. Service that often seems repetitive, mindless, even boring, but absolutely essential to the work of the family. In another talk given that evening, I heard something that really stood out to me: "Families are the Lord's workshop on the earth to help us live and learn the Gospel...strong families don't just happen...it takes real work." Fathers and mothers have to work constantly to keep their family strong. And this work is tiring, but so rewarding. Right now, in the thick of this draining work, it's hard to see the rewards of our efforts. But they are there, waiting to be recognized. The proclamation reads:

"Parents have a sacred duty to rear their children in love and righteousness, to provide for their physical and spiritual needs, and to teach them to love and serve one another, observe the commandments of God, and be law-abiding citizens wherever they live. Husbands and wives—mothers and fathers—will be held accountable before God for the discharge of these obligations."

If we are teaching our children these things, then our Heavenly Father is pleased.

Third, we need to acknowledge the sanctity of the home. In her talk, Bonnie Oscarson said,

"Let us defend the home as a place which is second only to the temple in holiness." 

Now this is not an easy task. The temple is clean, white, pure, and quiet, no voices above a whisper, usually. My home is the complete opposite: loud voices, screaming, a crying baby, dirty floors and countertops, dusty shelves. But I don't think that means we aren't making our homes holy, because it's hard to stay on top of these things when you have young children (well, for me it is!) What we choose to view in our homes, listen to, read, and how we treat one another are indicators of the holiness that can be found, because they create the spirit. If a home has the holy spirit, it's undeniable. I have been to homes where I could feel it, just setting one foot inside the door. I'm not sure what others would say about my home, but I do know that I have lots of work to do in this area. I want my home to be a refuge from the world where my children feel safe and loved, cared for and listened to. The saying is true that the mother is the heart of the home. My challenges as a mom have greatly robbed me of the joy and peace I want to feel, and in some ways I feel like Satan is winning the battle, that he has trapped me in bitterness. But I can break free of this and see the sunshine again, as long as I strive for it. The proclamation reads:

"Happiness in family life is most likely to be achieved when founded upon the teachings of the Lord Jesus Christ. Successful marriages and families are established and maintained on principles of faith, prayer, repentance, forgiveness, respect, love, compassion, work, and wholesome recreational activities."

This is how we can find happiness in our families, how our homes can feel sacred and holy. If we are making the gospel our foundation, then we will have sanctity in our homes. I know this to be true.

The proclamation on the family is succinct and to the point. It lays out every important, inspired aspect necessary to having a happy family. It outlines what God ordains the family to be, and how we can please Him in what we do in our families. I know that "The Family: A Proclamation to the World" was written by a prophet from our days, and that if we abide by its precepts, we can have more peace in our families and homes. This is my defense on the proclamation, and I declare it boldly.

Time Out for Women 2015

This past weekend I was able to attend Time Out for Women with an amazing group of women from my ward, or church congregation. Because I had such an amazing, life-changing experience last year, I knew that going to this event would become a yearly tradition. Last year's experience must have been a unique one, because this year, I was a little disappointed. There were many great points made by each speaker, but none of them really touched me or made me get emotional, or have one of those moments that really made me think about what I need to change in my life, or so I thought. But overall, I came away with a new sense of what it means to develop talents.

Jenny Oaks Baker, a celebrated violinist with 4 children, performed many beautiful pieces, some with her 11-year-old daughter on piano. When she performs, she has a very serious look on her face, so serious that you wonder if she ever smiles. But when she's done, she does smile, and takes a bow, and when she spoke to us, she had a smile from ear to ear. I was impressed by her motivation and drive to succeed. She travels all over the world performing her violin, sharing the talent she has been given. Even though she has a family to take care of, somehow they make it work, and she is able to pursue the talent that God has blessed her with. I really admire that about her, and I am positive that she knows that this is the path God wants her to take in her life. She is touching people through her music.

Then, Wendy Ulrich, a psychologist, spoke about the four stages of relationships: 1) honeymoon; 2)power struggle; 3) withdrawal; 4) acceptance/renewal. In any relationship with a person, these are the typical stages that we all go through. In my relationship as a mother to Julianna, I am definitely going back and forth between stage 2 and 3, hoping to reach stage 4. Actually I would think most people bounce back and forth between those stages. Acceptance takes a long time to reach. She then asked us to relate these stages to our relationship with God. She also said, "Sometimes we need to sit still and let God and our goals find us."

On Saturday, a singer named Sandra Turley performed and spoke to us. She sang a song about seasons, and asked if we were happy in the season that we're in, or are we always looking to the next season? She also sang an arrangement of "Somewhere Over the Rainbow" and "Defying Gravity" from Wicked, and talked about how the two songs were related. One line stood out to me: "Some things I cannot change but if I don't try I'll never know." Sandra told us to clear out the clutter and focus on the things that matter. Instantly I thought, to me, this means to develop my talents. Stop cluttering my life with things that are unimportant and do something that will make a difference.

A piano player named Josh Wright sat down to amaze us, and I began to write in my journal as I listened. I wrote about my own talents, and how I have been wasting years not developing them. Sure, I have been the best mom and wife I could be, and I play the flute here and there for church events, but I know I have even more talents that I can give to the world. What does God want me to do? What goals will I set to accomplish this? I began to think about all the speakers and performers at Time Out for Women, and realized that the only reason they are up there, inspiring all of us, is because THEY PURSUED THEIR TALENTS. They discovered what made them unique and special and made sure they developed those things. And while most people give up, or let other things get in the way, they didn't. They kept going, even when it was hard, and got to a place where they are now inspiring other people to do the same. That's what sets them apart. They set goals, and they reach them. And then they set some more.

Another speaker, Emily Watts, talked about how it's okay to be an imperfect mother. She said maybe the finished product is not the whole point--it's the process, the learning. She said "The broken heart is the fertile field for the seeds of his love." Later on, Emily Freeman pointed out that sometimes you can't see God's hand in your life, but you can see the fingerprints. She asked us what one thing we would write on a small stone as our "faith step." Right away, I thought, "Stop wasting time!" She ended by saying, "Be someone who can make a difference."

When I reflect now on all the speakers and performers, I can see how they tie together, and even though I thought I didn't feel anything while I was there, I really did. I just didn't realize it until now, after reviewing my notes and writing this post, I finally felt the tears come to my eyes. I was inspired at this event, inspired to make goals and reach new heights in my life. I can't make excuses anymore for wasting time. I know that I can achieve things of great importance, and that anyone can. I know that I can make a difference, that every single person can make a difference. I know that I have talents that need to be developed, that every person does, too.

Our group went to lunch during the break, and my table had a very interesting conversation. I brought up the point that all these women inspire us because they don't waste their time--they go for their goals and don't give up. Someone said that she thought I could be like those women too, but that maybe my story isn't written yet. I was flattered! But then she said maybe my kids need me more right now. She was right. So, I am doing what God wants me to do right now in my life. Maybe He does have bigger plans, I don't know. But for now, I will continue to write my story, and maybe my little goals will add up to bigger ones in the years to come.

Softball skills day

This past Saturday, it was a very cold morning, and Julianna and I bundled up and headed to our local recreation center's baseball fields to see what awaited us there. I had been dreading this day for over a month now, and it was here. Joel was gone at a campout, but our wonderful respite worker, Lisa, saved the day again and stayed home with Blake and Nathan so I could have a little time with Julianna. I sure needed it because my nerves were intense.

Before we left, Julianna and I said a prayer together, that we would both be guided to know if signing up for softball was the right thing to do for her. I told her that if she felt like she didn't want to play after all, that it would be okay. I had called the center a few days prior and spoke with the person over the girls' softball, letting him know my situation. I have a daughter who is 11, but was held back a year, so she is in 4th grade. She wants to play softball, and has never played any team sport before, ever. She wants to play with two girls from her class, but they are 10 years old. Will she be able to have them on her team? Does she have to do the draft like the other girls? He couldn't even answer all my questions over the phone, so just told me to come on Saturday morning and he would work everything out.

So we got there, and started waiting in a line, and after a few minutes of no movement in said line, I went to another table and asked to speak with the guy in charge. They told me to wait until he was available. So we waited, in the cold, surrounded by girls ages 10-14, flaunting all their softball gear, playing catch with friends, running bases, trying to look at the top of their game. After all, every single coach was there, watching, looking to create their star team. And as I stood there waiting for the guy who was supposed to solve all my problems, I began to feel scared again. Confused. Wondering why I was even here with my daughter who has never played softball. How could she even play with girls like this? Why would I even want her to play when it's no doubt going to be competitive and the coaches putting the pressure on each girl to win? What was I doing here? I felt like I wanted to leave, right then. I felt out of place with my daughter. I didn't like that feeling. I held back the tears.

As we were waiting, one of the girls from Julianna's class came over to say hi. She was nice and said that she put Julianna's name on her form so they could be on the same team. I told her we weren't sure if that was going to be possible, but we would try. She then ran off with another friend to play catch, leaving me with Julianna. And we kept waiting. Finally this guy comes over, and I remind him who I am, and of the situation. He replies, "Well, I'm really sorry. I understand your problem, but we really cannot allow her to play with girls younger than her. Other coaches see this as unfair. I would need to talk to my supervisor and get back to you on Monday."

I am not happy with this answer at all. Here's where all those years of fighting for my daughter kicks in, despite how I am feeling inside. It's amazing how it just comes out, even when I am scared out of my mind. "I spoke to you a few days ago. You said you would fix everything for me if I came to skills day. I am here. I don't want to come back Monday. Isn't there someone you can talk to right now? I want this resolved today."

Suddenly his response changed. I guess he remembered that there was someone he could talk to. He told me to wait a little longer and he would talk to someone on the board for softball.

So we waited some more. And by this time, all the 10 year olds were lined up on one of the fields, each with numbers pinned to their shirts, glove on hand, ready to show what they've got. The older girls were on the next field. I started to ask Julianna if she wanted to go out there with her friend and do what the coaches asked. She began to get very nervous and started saying she didn't want to play softball anymore. She was speaking very quietly, so I had to get close to her. I think she didn't want me to be upset, but then she said, "You said I could tell if you if I didn't want to play. And I don't want to."

Hmm...was this my way out of the whole thing? I started to think that maybe I should just go with Julianna. She's entitled to her own choices. If she doesn't want to play, then she doesn't have to. Fine with me; in fact, it's perfect. Now I won't have to face all of the unknowns of her playing in a team sport. I was beginning to feel relieved. And then around this time, the guy came back, and said that it was fine for her to play on the younger division, and she could also have the two girls on her team, even though it was supposed to be a draft pick.

Great news, but now what was I supposed to do? So we got back in the long line to register, and the whole time, Julianna is telling me she wants to go home. She changed her mind. And I'm thinking, we just got these people to bend the rules for her, majorly. As much as I would have liked to throw in the towel, I knew that wasn't the right decision. And this is when I have to be really clever with Julianna. She has quite the one-track mind, so talking her into something isn't easy. So I began reasoning with her. "Julianna, I know you are scared, but I know you can be brave. Your friends would be so sad if you didn't play with them. And your teacher wants to come watch you play, too. Sometimes we have to do things that are new, and might be scary, but I know it will be fun. Can you be brave for me?" Julianna looks out at the girls on the field, now starting to catch grounders from the batter and throwing the ball to first base. "Julianna, what if we sign up today, but we don't make you go out there where those other girls are? You don't have to do that today." She's thinking about it, and finally says softly, "Okay." So we got her signed up, and they even did it for free, just in case she changes her mind.

Before we left, we went closer to the field where the girls were catching the ball, and I asked her again if she wanted to do it. She very quickly said no. So we left. And on the way home we made a quick stop for donuts and hot chocolate.

I am so glad that I didn't give in to that little feeling, that escape that would have been so easy. I really came close to leaving it all behind. But I think this softball experience is just what Julianna needs to grow in even more ways that she has before. It's going to force her to stay very focused, to learn a series of rules to follow, to understand how a somewhat complicated game is played, and to make new friends. I plan to coach right along side her until I feel she is ready to go out on her own, and with the help of her friends. We plan on practicing as much as we can so she feels more confident. And so far, she's been able to catch the ball in her glove a few times! Her throw is getting stronger at a close range. Each time we practice, she gets better.

And I also think I need this for me, too. I have been avoiding doing something like this for her for too long now. As much as I hate to admit it, I think I shelter her a little too much, mostly because I worry how people will react or treat her. But I can't let that stop me from sharing this beautiful girl with the world. She is here for a reason, and if I hide her too much, only her family will see that reason. It's time for me to allow her to spread her wings in a new way.

One of my biggest fears

So earlier today, my husband and I were talking, and the subject caused me to erupt into tears yet again. I don't think I even realized how much of a fear it was, until we actually discussed it in more detail, and even just thinking about it made me cry. And now that I know it's a fear of mine, I know the only way to conquer it is to face it. But man, I don't know how I will survive it.

Blake has been playing basketball now for a couple weeks, on a team through our local recreation center. He's played a few other sports in the past, and we've always enjoyed the experience. Yes, it's stressful running around all the time to practices and games, but it's always something that helps Blake grow and learn and make new friends, and face his own fears as well. So of course I would never keep him from playing sports, as long as he wants to.

So why do I not do the same for Julianna? Simple. I'm scared out of my mind. It's my biggest fear for her yet.

I was talking to someone at church today about Julianna, and I had a big realization when it comes to being her mom. I want her to progress socially, and am happy to provide opportunities to do so, as long as I'm not there. I love that she can go to her church Primary class all by herself, and her church activity days group, and that others will help her and keep her involved and include her, but I don't want to be there to see it. I'd rather hear from others how well she is doing. Of course I want to see her do well, but what I don't want to see is how others might make fun of her, or look at her differently, or stare at her, or exclude her. I don't want to hear anyone laughing at her, or ignoring her. I just want to pretend that that never happens, and the way I do that is by not being there for most of the social settings she is involved in. I would love to be able to help her in those situations, because I know I could, but at the same time, I don't want to, because it's too hard to see those things that might happen. I know, I'm a big wimp.

So why on earth would I ever consider letting her play for a team sport with most likely all typical 11-year-olds? Same rules apply. I don't want to see the bad. I don't want to hear the questions or see the stares from parents. I don't want her to feel confused or scared, or get hurt physically because she doesn't know how to play the game. I don't want to see her left out of a group or yelled at too harshly by a coach or teammate.

But by not allowing her to do it, I am robbing myself of the moments that I probably will see. Maybe she will totally surprise me and do really well following instructions and playing the game. Maybe she will walk up to those groups of kids and play and talk with them just like a normal kid. Maybe the other kids won't leave her behind. Maybe they will teach her and show her love and friendship. Maybe she will love it and I will love watching her. Why would I ever deny her those wonderful opportunities to grow? It is very selfish of me.

I think being a mom is being willing to see the good and the bad that happens to our kids. We can't always shelter them from their feelings getting hurt, or from being excluded, or from fitting in with the other kids. I certainly don't like seeing it, because it hurts me even more than it hurts them. With Blake, I have no problem watching him go through those challenging times as a kid, because I know he is strong enough to get through them. But with Julianna, I don't have that same faith because of her challenges. Every single child is unique and has different talents and abilities. I already know that Julianna is not the most athletic or coordinated. But that doesn't stop her from writing this on her piece of paper a few weeks ago when we made New Years' Resolutions as a family:

I want to play softball and learn how to be good at softball.

Since then, we've been talking about how we could make this happen for her. It's going to take a lot of support, the right coach, some very compassionate girls, and a lot of prayer to accomplish this. I might even step in and help coach if that's what it takes. But if this is what Julianna wants, it's time to really go for it. As much as I worry and fear that horrible things will happen to her, I have to trust that even more good will come as a result. No matter what, she will grow socially, and learn teamwork.

And I will learn to face the not-so-good things that will inevitably happen to her during her lifetime, along with the good. It's time to conquer this fear of mine. If Julianna's not afraid, then I won't be either. At least I have a few months to prepare myself.

A New Phase: Burn Out

On my blog, I have written about the different phases I went through while raising Julianna, and then with Blake and Nathan. Once I was caught up to the present, I blogged about different events or thoughts that have come to my mind. And now that I have been writing on this blog for a little over a year now, I have noticed that in the past few months, now that I can look back on them, I have entered a new phase in relation to motherhood as a whole, and that can be summed up in two words: Burn Out.

I have been a mom for over 11 years now, and a mother to 3 kids for over 2 years. Each child has brought his or her own set of challenges that have tested me to my limits and pushed me to do things that I never imagined I would need to do. And I did them, all of them, every single thing my children needed over the years, no questions asked. I took them to doctors and specialists, to surgeries and evaluations. I've spent countless hours on the phone fighting for help for Julianna, many scary nights awake holding Blake as he flushed and blistered, and cried myself to sleep some nights worrying about the pain Nathan was in after his surgery. In just 11 years, I've seen and done so many things, and for certain it has changed me as a person. But I think 11 years has done me in, and it's not like I can resign or call it quits. I've hit a wall, and that wall has knocked me out cold.

I'm tired of all the behaviors that have evolved over the years with Julianna. Yes, she has been able to change in some ways, but there are always new things that we have to deal with. It gets better in some ways, but never all the way better, and it never will. Now I love Julianna and am so proud of what she has done over the years and the ways she has grown, but as her mother, I get to see the worst in her, and she gets to see the worst in me. All her teachers and therapists have always said how wonderfully behaved she is, and that they have never seen her tantrum. Me, it's almost always tantrums, or repetitive behaviors that often drive our entire family crazy. I've been walking on eggshells for a very long time, and do you know what that does to a person? Well, I'm starting to find out. At some point you just can't keep walking on those eggshells, and you instead let them crush beneath your feet. You let go, you give in to the pressure. You break, just like the shells. You just can't do it anymore. I am becoming broken, and unlike eggshells, I know I can be fixed and put back together again. I know I can climb over this wall, but it's not going to be easy. I just need to find that strength that I had all those years ago that kept me going. I need to find it, and soon.

Tonight was one of those nights where I was stomping on those eggshells. Blake was upset that I wasn't rushing to the store to buy him a basketball, because somehow he thought I said I was going to. So he followed me around the house asking, "I want my basketball. I want my basketball." Julianna has this thing where whenever she asks anyone a question, it has to be answered, and she won't stop asking. When a question is directed at Blake, it usually means we get to hear Julianna say "Blake!" about 4 dozen times, and he still won't answer, because he's tired of having to answer all the questions, too. This means I have to try forcing him to answer, and tonight he wouldn't do it. He said his name wasn't Blake anymore. And this is at almost 9:30, when my patience is more than gone. So I finally got Blake to answer Julianna's oh-so-important question, and all she asks is, "Blake, are you mad at me?" And this infuriates me, because she asks this question to us ALL DAY LONG NOW. It's her new question of choice. She starts to tantrum and I don't want her to wake up Nathan, so I have to drag her to another part of the house. I let her work it out, and before I know it, I can feel the tears burning my eyes as I realize once again, this is my life. This is what I have to deal with on a daily basis. How much longer will I have to deal with this? I have no idea! But I am past the point where I can deal with situations like this in a civilized manner, because like I said before, I am burned out. I'm crushing the eggshells, not tiptoeing around them.

Recently one of the people from Julianna's ABA therapy group came to talk. She comes to ask how things are going, and I love it, because this is when I can vent about Julianna's behaviors that they never see because she is so good around them. I started telling her about all the little things Julianna says and does, and how I have come up with ways to prevent them from happening, when possible, and she remarked that she was impressed that I had all these little very personalized methods on dealing with them. And suddenly, as I was talking to her, I stopped, and said, "Can you believe I actually have to do all this? I must be going crazy! I can't believe this is my life." But really, my little methods aren't always put into practice lately, because of this burned out phase that I am in. I have great ideas, but don't always put them into practice, because I'm tired of walking on those eggshells.

I know I will get to where I need to be as a mother. I know I can find that strength I once had. Maybe Nathan's crazy toddler phase is adding to the burn out. But right now, I am in the trenches, fighting battles every day, and it seems like there is no end in sight. I guess I need to change my point of view.
And a change of heart.

From the Book of Mormon, in Ether 12:27, it reads, "“My grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.” President Ezra Taft Benson, a former prophet in the LDS church, added to this verse, "What a promise from the Lord! The very source of our troubles can be changed, molded, and formed into a strength and a source of power." I believe in this with all my heart. It's time to get to work, and enter a new phase of motherhood. Time to end the burn out.