One Year Post-Surgery for Nathan

Tomorrow is a huge milestone for Nathan. It marks one year since he had his cleft palate repair. August 20th will be a day I will never forget. All the emotions going into a surgery are almost overwhelming. You have to make sure they are fasting, you have to get there super early in the morning, you have to pack for the hospital (which was supposed to be only one night but turned into 2 for Nathan), and you have to think about the moment when you will send your little baby away to the doctors who will be doing a very painful operation.

The holding area is lined with little cribs and beds where curtains separate the patients, each waiting for their doctor or surgeon to come take their child away. Every few minutes you would hear the squeaky wheels of another bed being taken down that long hallway, and hearing parents walk the other direction. I became very emotional each time this happened, but somehow, when they came to take Nathan, I was able to keep my composure. I knew he would be okay.

They sent us to a room in the hospital where everyone sits and waits, and stares at a large screen with numbers and colored codes indicating the progress of each patients' surgery. And the longer it takes, the more nervous we became. Nathan's entire surgery was only supposed to be 2 hours. But when it went past 2, then 2 1/2, we began to wonder if everything was going okay. But suddenly we saw the surgeon and his team come out, ready to tell us that it went well and that we could see our baby.

I will never forget how Nathan looked right after surgery. His poor little swollen mouth and face, and the oxygen mask, and his grogginess. I could tell he was in so much pain. He couldn't even close his mouth. After we were moved into a recovery room, I was able to try feeding him with his bottles, and though he was very hungry, he couldn't really try because of how much pain he was in. That night was awful, trying to regulate his medication with the nurses, and then being woken up surrounded by a huge team of doctors around 6 am. I wasn't even sure how long I slept! They wanted to find out how much he was eating, and I told them, nothing! And then they explained exactly how the palate was repaired, and I was heartbroken for him all over again. The surgeon never explained in detail what they did, and now that I knew, I could not even begin to imagine the amount of pain Nathan was experiencing.

We got through those 2 nights and three days in the hospital, somehow. And the recovery, too. And as the months went on, Nathan just packed on the pounds! He was born at 8 lbs 15 oz, and at 9 months old when he had the surgery, he was only 15 pounds, the 1st percentile for his weight. He is now over 25 pounds and in the 60th percentile. So in a year he's gained 10 pounds and looks as chunky as ever. He's learning new words every day. He charms everyone who comes in contact with him. I am so glad we have him in our family.

He might have a few more bumps in the road. Possibly another surgery to fix the small hole that is still healing on his palate. We don't know how many more surgeries he will need. And his chromosome 22 duplication means he is at risk for developmental delays. So things are up in the air with him right now. But from what I can tell, he is a very average, stubborn, determined little toddler who amazes me with his cleverness and cuteness. And when I drive by the hospital, I don't get those horrible feelings anymore. We've moved on from that, at least for now. But August 20th, 2013 will always stay in my memory.

Julianna, Part 13: We're all caught up!

So in the last post I talked about how Julianna got a 1:1 aide written into her IEP. This was a huge milestone as far as what I have been able to accomplish for her in the school setting. I can't say enough good things about 1:1 aides, and especially the one she was assigned to, and still has now. Her aide has been hard-working, motivating, patient, reliable, responsible, informative, helpful, I could go on and on. Without that aide, Julianna would not be able to attend public school and reap the benefits of being around regular peers who model appropriate social behaviors for her. It also takes a lot of the worry away from me. The first couple of years, I worried about how she would do on her own at school. She doesn't always know where to line up, or follow procedures, or stand up for herself if she were bullied (or something even worse). Having an aide be her "shadow" means someone is always there to stand up for her in those situations, and to give Julianna the tools to improve socially and academically. I feel very fortunate that Julianna is starting her third school year with the same aide who has become such a support to her. She has made great progress in school and because I have things set up for her there, I don't have to worry anymore. I can send her off to school, confident that she will be in good hands. A huge burden lifted for sure.

Now this aide isn't the only person who has been supporting her the last few years. We also have a wonderful respite worker who is provided by the regional center who has been helping me in the home, 30 hours a month, for almost 3 years. What we know about Julianna is she will behave very well in school, and then come home and unleash all that pent up frustration and anxiety on the family, usually in the form of major temper tantrums. This means we have been living with temper tantrums for almost 9 years (she started around 2 years old). I have other demands on my time and cannot always spend that one on one time that she desparately needs and thrives on. Our respite worker can be there for her in that way to engage her in activities to keep her focused and happy. The tantrums still come, and we are working on it, but it is such a relief to know that I also have someone in the home to help as well for 30 hours a month.

And I can't stop there, either. We also just began ABA therapy again a few weeks ago. She will be receiving 9 hours a week, MWF from 2-5, where someone works one on one with her during that time, teaching her life skills, social skills, coping skills, and whatever else she needs. Through this program, I also receive parent training on how to cope with the tantrums and behaviors that are never seen by the therapist because Julianna is so good at hiding them. Just yesterday, a therapist came over to talk with just me about what has been going on in the last few weeks with her, and we were able to come up with great ideas on how to approach these problem behaviors. And her new therapist that works one on one is just wonderful! She is positive, outgoing, and fun, something that Julianna really loves. She always has great toys and games and crafts that she is bringing over to keep Julianna engaged. Again, a huge stress relief for me, because she gets even more 1:1 time.

We are also seeing a psychologist a few times a month, and she is helping us figure out how to approach the problem behaviors as well. She introduced us to the 1,2,3 Magic behavior program, which is so simple to implement, and just started using officially on Wednesday. When my older kids talk back, or fight, or hit, or whine, etc, I say, "That's 1." If they persist, "That's 2." And if it still doesn't stop, "That's 3, time out" (1 minute for each year of life.) We have been doing the 1,2,3 for her tantrums and hand biting, and so far, it is working. But I know it will not be easy. The biggest part of this program is to not show emotion when you are disciplining, and that is really hard for me. Because of the struggles I have with the kids, I often feel angry and bitter, something I need to work on as well. Those emotions are always at the surface, waiting to boil over to the family. When I am faced with tantrum after tantrum (and if you don't have a child with autism, you don't know how bad tantrums can be) my patience is pretty much gone most of the time. But showing anger doesn't solve anything. So I am trying to be strong and in control right now!

We are also making a chart for her to reward her when she asks for help instead of biting and tantruming. Whenever she can't do something, she will automatically resort to a tantrum. So not only are we doing the 1,2,3, we are encouraging her to use her words and tell us what she needs first, and she will be rewarded with stickers on a chart. This will not be easy for her, but I have gone long enough with these behaviors in our home. So I am going to stick to this plan try my best to help her stop these behaviors once and for all!

She is also still doing the GFCF diet and doing so well on it. At her age, she totally understands what she can and can't have, and has never really complained either. Last night, we went with our respite worker to McDonald's for a treat after Julianna's horseback riding lessons (which she is getting really good at, by the way,) and even though everyone else got ice cream, she was content with her french fries, and when we got home, I made her some chocolate almond milk. We have made the diet work just fine even though the rest of us are not on it. Our goal is to get to her 11th birthday in December, which will be 6 months. If we think she has improved enough to continue the diet indefinitely, we will do that.

What I have learned since being her mom is that each new phase presents challenges. Once I get through something difficult, another problem presents itself. It is typical of any child, actually, and in many ways, it is a blessing, because it is helping me learn new skills and tools that I can share with other moms who might be struggling. I treat Julianna just like our other kids and include her in everything we do as a family. She is going to learn what she will learn in school, and in the home, and we will take her as far as we possibly can. I don't know what the future holds, but I keep holding on to the hope that she will be able to have the same opportunities as anyone else. And if not, that's okay too. We will be there for her, no matter what.

Nathan's new specialist: speech therapist

I am still amazed at all I have been through with my little guy Nathan in just 20 short months. Since his birth, he has been seeing doctors at 4 different offices on a regular basis (this includes his pediatrician.) Now we get to add a fifth to the list: speech therapy.

When his ear tubes mysteriously fell out sometime around the beginning of this year, his ENT (ear, nose, throat) doctor recommended he begin speech therapy as soon as possible. In fact, she wondered why he hadn't been receiving it all this time. I told her he was seeing one as part of the craniofacial team, but all she did was make sure he was drinking correctly from the bottle, and listened for sounds he was making as a baby. Because the visits were not regular, (only every 4 months) it was not really speech therapy. So we took our ENT's advice and put in the request.

His evaluation about 6 weeks ago went very well. They said he would qualify because he needs help pronouncing certain sounds correctly, and help feeding out of a cup. I was told he would need to come twice a week for therapy. And this completely overwhelmed me. I was already about to begin 9 hours a week of therapy after school for Julianna, and Nathan already had someone coming here once a week for his early start help, and not to mention all the other appointments that fill up each month for Nathan that involve driving about 30 minutes one way (we average 2-3 visits). This therapy office is another 30 minutes in the opposite direction. Could I really add in another doctor at this point?

But then I started to think about how much he would benefit from this therapy, almost more than any other thing he's doing. He would be getting regular help from a professional, and I was also interested to see how they did speech therapy. Julianna has received it in school since she was 3, and I've never really sat in a therapy session more than once or twice, so I don't know much about it. I knew that in the long run, the drive and sacrifice of time (and most likely his naps) would be worth it.

So our Utah trip delayed his therapy a bit, and finally we went for the first time yesterday, the 5th. This therapist was so animated and fun, and had him sit in a high chair, and showed him some toys, and really engaged him in his speech. I would say he learned to imitate at least 3 words in just one half hour. She would hold his mouth at certain times to help him use his lips to pronounce certain words appropriately, and she started training him on the Avent 360 sippy cup. As I watched my little boy engage with this complete stranger, I suddenly felt tears come to my eyes, thinking about how far we had come already, and that this new little journey for him would be so beneficial to him. I felt overcome with gratitude, thinking about how much I have been guided in getting him the right help since his birth, and how overwhelmingly helpful every single doctor has been so far. What would I do without these amazing people who care so much about my own child and will work hard to improve his quality of life.

This all may sound silly to say, considering he's not even 2 yet! But sitting there in that little therapy room really gave me a chance to reflect, and to realize how blessed I am with Nathan. He is doing so well, and he has the cutest personality and smile, and I just know he will go so far in life despite his little birth defect and chromosome duplication. The more doctors, the better, at this point! Yes, it's tiring and stressful to be going here and there all the time, but Nathan is worth it! I would do anything and go anywhere to help him achieve his potential. We're going to get there, one little step at a time.

Julianna, Part 12: Getting a 1:1 Aide

Quick recap on where we left off: Julianna had just spent the last six months doing homeschool with me, but I became pregnant with Nathan halfway through, so I was looking into what options were available at the school now that her wonderful resource class had been removed.

School started in 2012, and for the time being, she was placed in the highest functioning class the school had. Blake was in 1st grade now, so that meant both of my kids were in school all day. I opted out of the bus for Julianna, for two reasons: One, she said she never liked riding the bus all these years, because most kids weren't nice, and some even would take things from her backpack, or clips out of her hair, and she had no one to help her on the bus. This broke my heart hearing it, but I was also happy that she had reached a point where she could tell me what was wrong. Two, now that Blake was going to school at the exact time, it just didn't make sense for me to put one kid on the bus and drive the other one. So I drove them both, and the district would reimburse me for the miles driven.

Because I was not sure about the class, I walked in with her every day for the first few months to observe and find out it would work. I was getting very pregnant by that time, but that did not stop me from making sure she would be okay at school. I knew that throwing her in a regular classroom didn't work, because this caused her great anxiety, which is why I pulled her out to homeschool. But I also had my concerns about the special ed class, because many of the kids were prone to displaying spontaneous behaviors or outbursts, and this only increased Julianna's anxiety. The curriculum was very low for her, so I knew she wouldn't learn as much as she could either. So it wasn't long into the school year that I told her teacher that I wanted to get Julianna a 1:1 aide and place her back into the regular classroom. Her teacher totally supported me on this, and said she would do whatever she could to get that for her. The first thing she did was use one of her own classroom aides to send with Julianna to the regular classroom for part of the school day. I chose to send her to a 2nd grade class instead of 3rd, because she wasn't quite at 3rd grade level yet. And the aide her special ed teacher chose could not have been more perfect. This was the year that Julianna got to start playing the flute for the first time, only because her wonderful teacher convinced the music teacher to let her start a year early (my fault on this one; I thought kids could start playing an instrument in 3rd grade, but it was actually 4th.) So since I had been telling Julianna she could play the flute that year, we all knew we couldn't go back. The amazing thing was, her aide played the flute in school, so she was able to help Julianna much more.

The process for obtaining a 1:1 aide is not easy. Once you request it, the school district by law has 60 days to make a decision, based on their own observations of Julianna and what they think her needs are. So I knew that at the end of the 60 days, there would be an IEP meeting; a meeting that, to me, would be a huge part in determining whether Julianna would be able to succeed in school. Once her aide was comfortable working with Julianna, and I felt comfortable with her in the classroom, I stopped coming each morning to observe. The special ed teacher said she specifically assigned Julianna an aide before the decision was made so there would be more evidence to support the fact that she needed one. I don't even know if she was allowed to do this, but she did, and I was so grateful to her for all the support she gave me during this time.

During those 60 days, I talked to this teacher a lot, and she would tell me things she was hearing from the big people in the district. I know for a fact she wasn't supposed to be telling me these things! As the IEP meeting approached, I felt more confident in securing the aide, mostly because of what this teacher did for Julianna.

Well, the big day of the IEP finally came, and once again, I would be sitting around a table with people who all know Julianna really well by now, and who all say they want the best for her, but when it came down to it, what I was requesting was not something they just handed out to anyone. All the teachers came with what they thought would be best for Julianna, and I only knew that her special ed teacher was on my side. The meeting was mostly led by the behavior specialist for the district, who was temporarily replacing the evil "Mrs. Fox" that I referred to in earlier posts. Turns out Mrs. Fox was silently let go over the summer, and I couldn't be happier. I knew that if she were at this meeting, there would be no way Julianna would get that aide. So, we all sat around the table, and went over a questionnaire that listed items that were required in order to obtain the 1:1 aide. After each item, we all voiced our opinion, and by the time we answered all the questions, there was no denying that she clearly needed a 1:1 aide to succeed in school.

Something that is important to note, especially for those of you looking into placing your child in the right classroom, is the "least restrictive environment." Basically, every child deserves to be placed in the classroom that is right for them. Least restrictive means you do everything you possibly can to make it work in a regular classroom, because all students, regardless of their disability, deserve the chance by law to learn with typical peers. Not every child can just be thrown into a special education class, which is what most school districts usually do. It's the easy thing. But it is a more restrictive environment, because there are aides and more supports. Julianna wanted to be in a regular classroom, but she needed help in order to do well and focus, so assigning her an aide was the answer for her. They did tell me that a 1:1 aide is the most restrictive placement, because someone is with her all day helping her. Again, going back to the least restrictive environment, I wasn't really doing that for her, according to their defintion. But to me, this placement was actually the least restrictive for her, because it meant she could be with typical peers and model their behaviors and follow their classroom structures and routines. It was literally freeing her, not restricting her, and this is what I had to explain to the teachers at the meeting. We all came to an agreement, and a 1:1 aide was written into her IEP. One more battle won for my little girl!

What I have learned about the IEP process is that IEP is called individualized for a reason. It stands for individualized education plan. Every child learns differently and has different challenges. Throwing a special needs child into a special ed class is not always the answer. It took me a while to figure out what would work for her, but I did, through much trial and error. I don't think I ever would have discovered this if I hadn't pulled her out to do homeschool with her. Every step of the way, I have been guided in helping Julianna.

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...

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.

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!  

 

 



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:  http://spaceshipmax.blogspot.com/

Facing our Fears

We've all heard time and again that we need to face our fears. Everyone has fears, whether they want to admit it or not. I decided to search google for some words of inspiration about fears. Here's some good ones that I found:

 

Yes, we all know this. We have to face what we fear before we will ever get over them. They will be fears until we overcome them. Makes sense. Easier said than done.



 

Again, this is true. Our weaknesses can also be fears, and once we conquer them, we are stronger than we imagined. This next one caught my eye:

 

 



 


Very clever, wouldn't you say? Which one sounds better to you, running from your fears, or facing them? Obviously, facing them does. We don't want to be thought of as cowards, right? But what if our fears looked like this?

 

Now I'm pretty sure that little bird is deathly afraid of snakes. But look at her, facing her fear like a brave little champion. We know this would never happen--it goes against the laws of nature. Of course a bird will flee her prey, her biggest fear. But humans, they should be able to face any fear, right? They have the capacity to overcome any obstacle, as long as they give it their very best.

 

Now take that sentence and apply it to a child with autism, sensory issues, and anxiety, and what do you get? Something very similar to that little bird coming face to face with a deadly snake. Each child with special needs has different fears. And Julianna is no exception. Over her 10 years of life she has face a few fears, fears that have brought her to her breaking point, where she literally looked fear in the eye and conquered, fears that would not even be considered fears to most children. First, she learned to toilet train. And second, she learned to ride a two-wheeled bike. These two accomplishments were ones that for a long time, I had almost given up hope on. I thought given her special needs, she just wouldn't be able to do it. But she did, after much effort, pain, and courage. It has taught me that if I continue to push her past her breaking point, she will succeed.

 

However, there is one particular fear of hers that I have not forced her to face head on, until now:

 

 

 

Swimming. It's been on the back burner for years. She took lessons for the first time at around 5 years old, and we began to notice how much she hated getting water in her face, or her ears. We of course took her swimming many times before that, but never official lessons until that point. I began to see that the typical group swimming lesson was not going to work for her. Blake was the complete opposite, and loved the water.

 

 

So the next couple years, we continued to expose her to swimming when we could; at friends' houses, swimming pools, etc, but no progress was made. And then she turned 8 years old, and was to be baptized a member of our church, which she wanted to do, and we were very proud of her. But seeing her get baptized, and go fully under the water was a big testament to us how deeply rooted her fears of swimming were. It took her a long time to calm down, her body was shaking uncontrollably, and she was crying nonstop. It was then that I realized we needed to do something to help her overcome this fear.

 

Just a few months later, when I was homeschooling her through a charter, I learned that I could some of the money for her education on extra curricular activities. And I of course chose swimming lessons. Because we were getting free money to pay for the lessons, I decided to do private lessons at an indoor pool, once a week. I thought for sure this would solve the problem. I informed the swimming facility about her background, and they tried to find the right person to teach her. And I thought it went okay, for the most part. She made progress, in small ways. Working one on one with someone was much better than learning in a group, in a crowded pool. But I knew she was still scared.

 

When the charter money ran out, and school was out for the year, I liked the swimming lessons so much that we decided to continue them, but in a small group (we could not afford private!) We hoped that Blake would be in her class, but he was too advanced, so she had to be in a class with most kids half her age. We pressed forward, hoping that exposing her more often now, twice a week, would make the difference for her. It did in small ways, but I still felt like no one was really pushing her past her limit. I knew this was the only way she would learn to swim.

 

 

We tried to be happy with the little progress she made in doing swim lessons for many months, and thought about what we could do next summer. It would be more challenging, because our baby would be born in December. After his birth, I decided to join a local gym, and they had an indoor pool. So last summer, I took her and Blake to the pool in the evenings with me so I could help her learn to swim. I felt like no one else had been able to do it yet, so maybe it was supposed to be me. I made her a picture chart with the skills we would be working on, and she was very excited that I was going to be her swimming teacher. I began to see a little bit more progress. She would actually stay in the water floating on a noodle instead of gripping me. She would try to blow bubbles and do strokes. But she still would not go under the water to swim. Despite the many hours I spent with her last summer, we had not reached her goal. Her fears were still as strong as ever, and I had no idea what to do next.

 

Flash foward to a few months ago. I heard from a friend that a recent high school graduate from our church was offering private, one-hour swim lessons in her pool. I liked this idea a lot. And thankfully, this girl was willing to teach Julianna after doing a "trial" lesson with her. We decided that for each of the 8, 1-hour lessons, we would focus on one or two skills she needed to learn that would naturally progress into her learning to swim on her own. I know it sounds like a huge leap for her, but she's 10 now. I want to put this fear behind her. I am finally forcing her to face it, head on. I am tired of bringing her to pools where she just watches her friends swim, and sits on the side of the pool with me, or won't go past the shallow end. And the only reason I am doing this to her comes down to this:

 

I KNOW SHE CAN DO IT!

 

I knew she could learn to toilet train. I knew she could learn to ride a bike. These challenges did not come without many, many tears, but after the tears, the fear went away. And today was no different. This young lady spent almost 40 minutes trying to get Julianna to simply put her face in the water, the first step in the process. She used a kickboard, and told her to put touch her forehead to the board, over and over, and slowly lowered it into the water, until Julianna actually put her face in, just a little bit. I've never seen her do that before, even that little bit, on her own. But that wasn't enough. I knew she could do more, and her swim teacher does, too. I told Julianna, do you want me to put your face in the water, or your teacher? And she said, my teacher. So this young lady counted to three, and tried pushing Julianna's face in the water, but Julianna became so rigid and tense that her neck would not move. So she took her to the deeper end and she let Julianna fall into the water, almost underneath, and lifted her right back out again. Julianna was shaking, crying, and scared, but we both talked to her, and told her how proud we were that she let her whole face touch the water. It was hard for me to see her like this, because I know how scared she really was, but I had to tell myself that the only way she will learn to swim is by facing the biggest fear of her life! She's going to be scared, until she's not anymore.

 

I don't know what the next two weeks of swimming lessons holds for Julianna, but I will be sure to keep you updated. What I do know is I now have a swim teacher who is just as determined as me to get Julianna to swim. And what I do know is that this might be even worse than potty training was, seeing her go through this. But in the end, we will all come out victorious, or at least a lot closer. Why am I making Julianna face her biggest fear of her life? Not because I'm mean, or uncaring, or insensitive. One answer, and I will say it again:

 

I KNOW SHE CAN DO IT!