My Quirky Kid -- A Father's Perspective

Those of you who have been following our recent journey to help our son Will work through his speech development delay have gained a glimpse of our challenges and triumphs through Amy’s eyes. Amy is clearly the best person to document this process for so many reasons. She is an incredible mother and nobody loves our boys more than her. She is also relentless when she needs to be and will not allow obstacles to stand in the way of Will getting the help he needs.

In the end when Will has effectively overcome this challenge he will mostly have Amy to thank. I wish that I had more time to talk to teachers and therapists and tear down red tape, but right now my involvement is less hands on. Amy is a better writer than I am, but I wanted to share my perspective, if for no other reason, I find writing cathartic and I think it will at least be helpful for me to get my thoughts out there.

It is important to note, and I think Amy will share this sentiment, there is not one thing about Will I wish I could change, not even his speech issues. I’ve told Amy repeatedly that if I had the ability to custom-order a son, Will is exactly what I would ask for. The kid is intense and passionate about everything in his world. He throws himself whole-heartedly into each day and each night he fights the urge to sleep until he just can’t stay awake any longer. I admire this about him. If I could meet my days with as much passion and enthusiasm as Will I would be a much better version of my current self.

We’ve known for a while that he’s behind the curve in speech development, but it’s never been a huge concern because there has been plenty of evidence that his wheels are turning. Besides, the kid already has a silky-smooth jumpshot, near flawless golf swing, and a killer fastball. We have just always figured that the talking would come later.

But lately it has become more apparent that Will is recognizing his inabilities to communicate with those in his life. This has been particularly heartbreaking because he does talk, but what comes out of his mouth is mostly unintelligible. Amy and I have often said that we wish we had a translator that would allow us to understand everything he tries to tell us. In the meantime we just do our best to listen to everything he says.

For me it’s been easy to feel guilty about Will’s struggles, and my inability to do more than I am currently able to do. Our move to DC has taken Will out of the only home he’s ever known, with a yard perfect for taking batting practice. This move has also taken him out of a school that he loved and was obviously benefitting him, and he’s had to leave behind all his best friends. What has Will done in return? He has diligently put one foot in front of the other and still walks around lighting up the world with his glowing smile. He continues to move forward rather than looking back. Another attribute that I wish I possessed more of.

While helping Will overcome this obstacle in his life has been difficult, I had a realization the other day that made me love this kid even more – his longest sentence on record is five words in length, “I wub you too dad.” One of these days the raw passion, love, and energy is going to come pouring out of Will’s mouth in coherent, thoughtful sentences. And when it does he will continue to amaze me in a completely different way.

Our Newest Crib Graduate

Last week I took down the crib for the first time since we've owned it (bought just before Will was born). Duke obviously learned some climbing skills from him older brother.

It was so very sad. Another testament that neither of my boys are babies anymore. A mother's job is to help her children grow up, but that growing up part is so bittersweet.

But on the bright side, I was so proud of Duke and how quickly he adjusted to his big bed. He was a champ and only cried the first night. Ever since then, when we tell him it's time for bed, he's almost giddy to go lay down in his bed. Love that little boy. He makes me so happy.

The crib is safely stashed under Duke's bed waiting for another baby.

The Big CA Report

The week started off with a bang! Anyone who knows Will, knows he is absolutely obsessed with fireworks. Mom and Dad just happened to have an entire box of sparklers on hand (isn't it a Grandparent's duty to have pretty much anything you could ever need/want stashed away somewhere?). Needless to say, the sparklers were a big hit with all the cousins.

Sadly, Cort was only with us for two days before heading off to MI for more work. But before he left, Grandpa pulled out all the stops and pulled out the bottle rocket launcher. Imagine a kid on Christmas morning and that's exactly how Will reacted to this super cool invention. Cortney's comment on Grandpa bringing out the bottle rocket launcher, "you know that's just not fair for anyone who ever wanted to be Will's best friend." it's true. If there were ever a question about who Will's favorite person was, Grandpa clinched it when he pulled out the bottle rockets.




These kids had WAY too much fun together. Will is finally old enough to understand who cousins are and he has been asking for Clark and Ava since we have been home. I really felt guilty tearing them away at the end of our trip. Left to right: Mae, Duke, Ava, Clark, Lauren, Will, and Dean.




Next, we found the secret music hideaway in the upstairs apartment leading to Uncle Jared's drums. When questioned if it would be ok if Will played his drums, Jared said, "Well he can't bang on them harder than I can, so I don't think he can really do any damage." good point. Will exhibited excellent rhythm and time. No surprise. What other hand-eye coordination activity can Will dominate?




No trip to Papa's is complete without a plethora of woodworking projects. At just 3, Papa says Will has far and away the best accuracy with a hammer of all of the grandkids (the oldest are almost 8). I couldn't be prouder:) Will could do side projects with Dad all day long.




We had a home run derby with the cousins. It was so fun! Here Clark is up to bat and in true Clark style is wearing a helmet in case the lethal woffle ball were to accidentally hit him. Grandma played pitcher and Will and Lauren were outfielders.




We also celebrated Ava's 5th birthday with pink heart shaped chocolate chip pancakes for lunch. Mae even said, "Oh my gosh-how do you make these? They are SO good!" Didn't
have the heart to tell her they were Krustez, and told her they were a secret recipe instead.




Snack time during one of the daily play dates. Ava really is a happy kid, she just puts on an I'm-too-cool-for-pictures look when I pull out my camera.




Duke enjoying more snacks after all the big kids have lost interest.




Will enjoyed making his first spreadsheet while in CA. Dad (Cort) was beaming with pride. Will has a bright future in analytics.




Papa watching Polar Express with the boys. This picture happened every night. Precious.




Our trip ended with the most amazing day at the beach. It's was too beautiful for words.









Duke particularly enjoyed burrowing in puddles.




And just like that, it was time to come home. I absolutely loved this trip and actually didn't want to come home. It was so nice to have a break from all of Will's appointments-I think that was my favorite part. While Cort was there, my siblings and I were able to go out to dinner sans kids and it was so fun. We laughed so hard and it was so great to reconnect with them without having to chase the kids all around in between sentences. I also absolutely loved my time with Emily and Tara. We had Way too much fun together.

Until Yosemite June 2012!!

My Quirky Kid: Don't Worry Baby

Tonight I spent the evening picking up the house and doing other Saturday evening chores while listening to the Beach Boys on my iPhone. I’m ashamed to admit how long it’s been since I have listened to this iconic band, the same band that permeated the airwaves of our home stereo my entire childhood. What great music! After reconciling my absence with them and promising to introduce the boys to Pet Sounds this week, I couldn’t help but contemplate why I love their music so much.

Being a California native, the music has its obvious draw. I know, and have been (numerous times) to every beach they mention. But on top of their incredible, and unmatched, harmonies, I think I love their innocence the most. Songs about being true to your school, wishing they were older so they wouldn’t have to say goodnight to their girlfriend, and talks of “love growing” while they surfed together seem so old fashioned, even naïve, now.

The Beach Boys always remind me of my Dad, too, as it was the music we always listened to on our road trips to Utah. But tonight I can’t help but think about what an integral part of Will’s life my dad has become. Other than Cortney and me, Papa is undoubtedly Will’s absolute biggest fan and cheerleader. My only regret is that they are not able to be together more. They will see each other once each quarter this year, and that still seems like a drop in the bucket for the amount of time they wish they had together.

I kept folding laundry, strolling down memory lane when “Don’t Worry Baby” came on. I sang along through the words in my head—words I can’t ever remember not knowing—and through the chorus,

Don’t worry baby,

don’t worry baby,

everything will turn out alright.

I noticed tears were streaming down my face. And suddenly the weight of the last week just seemed to collapse on top of me.

A few days earlier, Will asked me for something in the kitchen. Normally, I understand about 40% of what he says, so I commonly ask him to tell me things again or I ask him questions about what he wants so I can clarify what he needs. But that day, none of my normal tactics seemed to be working. I just wasn’t getting what he needed. This exchange went back and forth three or four times and still no conclusion was made. I got down on my knees and looked at Will’s eyes and asked him again what he wanted. Instead of concentrating on what his mouth was speaking, I just looked at his eyes. They weren’t eyes of obvious frustration or anger, they were eyes of sadness. They were longing, and somewhat confused. I gave it my best shot one more time and I asked Will what he wanted and still to no avail. Whatever he was trying to tell me, he was on the verge of tears speaking it. He was so sad and confused. Why can’t my mom understand me?

I wrapped my arms around him, and with a shaky voice told him, “Baby, I’m so sorry. I just don’t understand what you’re trying to tell me. But I promise we’ll be able to understand each other soon. I love you so much and we’re going to get through this.” He seemed almost satisfied with that explanation and gently laid his head on my shoulder seeking any kind of comfort he could find.

And we just stood there, holding each other. It was heartbreaking for both of us.

Later this week, I talked with our speech therapist who confirmed that Will was at least a year behind in speech and processing. It came as no surprise, but it’s still hard to hear that your child is more than a year behind in anything, let alone two vital skills. He likely has years of therapy ahead of him.

don’t worry baby, don’t worry baby…

everything will turn out alright.

But with those tears coming down, all I could do was worry. I was terrified.

What if Will’s speech/processing struggles aren’t really up to speed until later in his adolescence? And what if because of those struggles, Will is made fun of at school? Kids are cruel and a “Special Ed” kid is an easy target.

don’t worry baby, don’t worry baby…

What if Will hates school because it’s so hard for him to focus and concentrate because his APD so easily distracts him? What if that bright beam of happiness Will is to everyone around him starts to dim until all that’s left is a shy, timid little boy, ashamed of his weaknesses and inability to communicate verbally.

don’t worry baby, don’t worry baby…

What if this really starts limiting the friendships that he has and the friendships that he could make in the future? In the last few months, I’ve noticed multiple kids give Will really confused looks when he tries to talk to them. It’s not their fault, and they aren’t doing anything wrong, but it still makes me break inside.

don’t worry baby, don’t worry baby…

Does Will know that I worry about him this much? Can he sense my fears over this problem? Does he know all the books on my nightstand that I read at night are about APD? Or that I talk to his preschool teacher almost daily? Does he know that the most frequent Google searches on my phone are “private special needs schools/programs 22180” and “home speech therapy”?

don’t worry baby, don’t worry baby…

Does he know that he has a problem? That he doesn’t talk like other kids? Does he understand that he doesn’t understand most language in sentences? Or has he just become accustomed to basically living with a language barrier for almost four years now. Poor kid. It’s like he’s been living in a foreign country his whole life.

don’t worry baby, don’t worry baby…

Will, at the very least has fifteen years of school ahead of him and what if he struggles to learn the entire time? Failing test after test can get old real quick—I should know, I took advanced calculus. Elementary/middle/high school should be such fun memories and what if, for Will, its just memories of struggling? Cortney and I are such school junkies, I’m not sure how we would handle a child that didn’t like school.

don’t worry baby, don’t worry baby…

But how could I not worry?

I spent the rest of the night wallowing and crawled into bed feeling so incredibly heavy. I knelt in my bed and prayed for help. I know Heavenly Father loves Will so much, more than I even do, but please help me to have the faith to be strong to help him through this.

Slowly and sweetly, one by one, simple thoughts entered my mind.

1) Will’s Personality

When I was pregnant with Duke, Will has adopted by almost every family in my ward because I was too sick to take care of him. Every day someone would knock on my door, Will would answer, and he’d yell “Bye Mom!” as he left with them for the day. Cortney and I had often talked about how Heavenly Father created our spirits to be able to endure our specific trials on earth. We used to think that Heavenly Father created Will’s personality with so much happiness and love for everyone because he needed to be able to be taken care of my multiple strangers during that time and not be afraid. But tonight, I know that Heavenly Father made Will this way so that he could move three states away, start at three different preschools, endure a multitude of tests, go to different doctor’s appointments, meet with numerous therapists, and never be afraid but instead greet each of them with, “HI!” and a smile as big as Texas.

2) Will’s Athletic Ability

Will really is a prodigy when it comes to gross motor skills, and surely this was part of God’s design as well. He has an incredible ability to watch someone play a sport and then he can go try it and instantly succeed. Last year he spent a half an hour watching the Masters and went out and hit a ball with his bat (positioned like a golf club) and hit it straight 35 feet away on his first try. In fact, I can’t even remember him not hitting it straight at a great distance (for a three year-old). The same thing happened with the Frisbee. He got a Frisbee from school and brought it home and I threw it to him a few times in the living room and he picked it up, we went outside, and he threw it to me across the entire front yard perfectly.

When Will feels down, when he is struggling in school and needs motivation, he has sports to pull him through. Those recess sessions will be little bursts of confidence to get him through the day. And for those potential bullies, well, it’s pretty hard to make fun of a kid that can literally knock the ball out of the park, even if he is Special Ed. He’s bound to be the star player at most sports he plays and that might be his greatest source of confidence and friends throughout his adolescence, as well as motivation to keep pushing through school even though it might be hard.

3) Will Loves Music

The greatest language development we have seen in Will so far has come from him listening to music. And even when he repeats something we say, he says it tonally, sounding out the melody of the sentence structure, not the specific words. This is also the reason he is able to pronounce Chinese tones perfectly (wwaaaayyyyy better than his momma), and Cortney is constantly in awe at his ability to repeat Chinese so well. Once Will is mature enough in his speech/processing, I can’t wait to get him started on music lessons. I think his brain has already been wired to succeed in music.

And if he’s able to learn through music, he was born to the right parents. Will has known the chorus to Pinball Wizard since he was two.

4) Church

Our religion has a lay clergy (no one is paid) and thus uses the congregation to orchestrate sermons. Because of this tradition, young children practice giving “talks” from a young age (5) so they are prepared to speak in church as adults. Because of this, Mormons are trained public speakers and have naturally had much more practice at it since they have been giving speeches to crowds of 250 people once a year for most of their life. But I can’t help but think this is a huge advantage for Will as he will have so much more experience in perfecting his speech than his peers.

5) The Scriptures

When Will had his hearing test last month, one of the audiologists said, “If I were you, I’d have him on my lap and read to him for an hour a day. That is the absolute best thing you can do for him.” I came home and told Cortney that from now on, we would not be having any TV in our house after dinner. This was now going to be reading time and we would read until the kids were ready for bed. Will loves to look at pictures of the scripture stories and we have been able to teach him so much about the life of Christ and having faith because we set aside this time to read to Will. Surely these are all lessons to help his faith grow, even when his life is hard.

6) Books

I can feel the presence of God and the Holy Ghost differently at different times of my life. Most recently, I feel as though my prayers are answered so meekly by simple thoughts that enter my mind that I can then expound upon, like these. Will came home from school last week with a Scholastic book order form. I usually order a book or two for the kids to help build the library, but as I looked it over this week I had a specific idea that I should buy enough books so that each of the kids could pick out a new book each Friday night to read with Cortney when he got home from work as a kick off to the weekend and a special tradition to share with him, especially since he usually gets home at the end of story time most nights. I know this will quickly become the highlight of the week.

7) Our Love for Will

Last week I was talking to my sister-in-law about how she copes with her five year old’s severe food allergies. One of her answers was that she and her husband, my brother, had such a strong love for their son because his condition required them to serve him constantly. I thought so much about this for the next few days as I have felt my love and compassion for Will grow exponentially over the last three months. Cortney and I both have acquired such a unique love for Will and his needs.

And this has also brought us so much closer to Duke, as well. Because of the nature of this situation, I get a lot of one-on-one time with both kids (with Will during Dr appts and therapy visits, and with Duke while Will is at school). As my love has grown deeper, I am able to be more patient with them because of the softness in my heart and they, generally, are so happy and I love getting to know their personalities better.

I’ve also learned to forget about having a clean house (I was pretty good at this before, but I’m at pro at it now). My priorities are just so different now. It’s about taking care of the boys’ most basic physical and emotional needs and everything else can wait. I know my kids won’t ever look back and think, “Man, my mom should have put the laundry away instead of playing baseball/watching Toy Story for the 100th time/drawing trains with me." I’m glad I learned this lesson early in my motherhood career. Happy, well adjusted children who can feel their mother's love constantly is far more important than a tidy home.

don’t worry baby, don’t worry baby…

I still had tears damp on my cheeks, and I was still terrified, and I knew this was going to be really hard, but I knew God had created Will this way and He would keep providing him all the things he needed to be perform his mission on earth.

I went in Will’s room to pull the covers up and took a few minutes to just look him over. He’s so active, I rarely get a chance to just stare at him while he’s still.

I shed a few more tears. I just love this kid so much!

I wonder if he knows how much hard work he has ahead of him. Or, if he has any idea how awesome and resilient he is.

I leaned in, and whispered in his ear with a shaky weeping voice,

Don’t worry baby,

don’t worry baby,

everything will turn out alright.

CA

Shortly after we got there, I got to meet Cort in LA for 36 hours while he was there on business. It was bright and sunny (even though it was a cooler 70 degrees) and I enjoyed some relaxation time by the pool with a great view of the 405.




Our hotel was 5 miles away from my Dad's childhood home in Santa Monica. I have so many memories of staying here on weekends with my grandparents. Even though they don't live here any more, they have always lived in yellow homes and I am sentimental about wanting to settle down in a yellow house for that very reason.




I took another 3 mile side trip to this House and enjoyed an afternoon of initiatories.




Then we came back to Temecula and the boys were ecstatic to see Dad!

Decision 2012

I've now decided I want a tummy tuck more than a boob job.

And that's saying a lot because I really want a boob job.

My Quirky Kid: Hearing Test, Private Speech Evaluation, and breakthrough G Therapy

Hearing Test

Will’s hearing test at the district went great and, like I suspected, he doesn’t not have a hearing problem. The two Audiologists who administered the test were wonderful and very helpful and sweet. I expressed that I thought Will had a problem with auditory processing and they answered a lot of my questions about APD. Both of these women had been audiologists for at least 30 years and they both commented to me that while it was way too early to test for APD (not tested until 7 or 8), they did say that even though he easily passed the hearing test, he approached the test like a much younger child in his listening and problem solving skills. They suggested that maybe, as a whole, his auditory processing system in his brain is immature.

This hypothesis also makes sense to me. If Will’s auditory processing capabilities are delayed and he currently comprehends what a two year old would understand, then it would make sense that he would not be able to speak what he didn’t understand—explaining why he struggles with non verbs and nouns.

Personally, I like the diagnosis of a delay much better than a disorder, but I guess only time will tell.



Private Speech Evaluation

We found Miss Kathryn from a referral through our pediatrician, whom we have only ever visited once (for Duke’s 18 mos check-up), so it was pretty much a shot in the dark, but boy, we had a lucky shot! She is phenomenal! If you have a professional assessment of your child, the school district has to take that into consideration when making their decision on what services to offer to you. And seeing as how awful our first assessment went with the district, I didn’t want to take any chances and decided to opt for a private evaluation, since I knew Will would probably need private speech therapy any way.

I sat down with Kathryn while Will played and in less than two minutes I expressed that I was frustrated with the district and didn’t feel like anyone was listening to me. The district thinks that Will’s biggest problem is his speech delay. I think his biggest problem is that he can’t comprehend any verbal instructions in a classroom (something they cannot assess at the district level). Without missing a beat, Miss Kathryn said, “Ok, then I want him to come in for two more assessments to really get to the bottom of this processing issue before I make my final report. Any kind of processing delay is just too important to try to diagnose in just one hour.” Wow. Having someone actually error on the side of caution with my son instead of pawning off his struggles as him “being a boy” etc was a melody to my ears!

She took Will back into her super cool therapy “play place” (she practices out of her huge/beautiful home in Vienna) and directs me to a tower of trashy celebrity magazines and an overstuffed chair and ottoman. I was in heaven, to say the least.

About thirty minutes later, she comes out with Will and says, “Well I don’t know what the district was smoking when you came in, but he is a textbook case for a processing issue. I really just can’t believe they tried to pass him up.” I expressed that was why I was so distraught after our first assessment because as his mother, I knew something was wrong, but I felt like they were trying to make excuses why they wouldn’t be able to help him. She said, “We’re going to go all the way with this. If they deny him, we’ll appeal until they do. He should be in the Special Ed preschool, and nothing less at this point. We’ll do it until they cave”

I’m about ready to hug Miss Kathryn at the point. I can’t believe someone is completely on my/Will’s side! She says she wants to see him twice a week for speech therapy, but I said I was slightly concerned because our insurance only pays for 24 visits a year and speech therapy is about $200/hour (this is incredibly good coverage, BTW) to which she says, “Don’t worry about it, we’re going to appeal that too!”

Wow! I love her!

In my case, answers to prayers come about 30% through thoughts and impressions and 70% through people placed in my path. Miss Kathryn is most definitely an answer to my prayers and I am so relieved to have someone that will be able to fight for Will with Cortney and I.

Will has been such a trooper through all these assessments. Each time we need to go to one, I tell him that we’re going to get to play with someone new and he’s always really excited to get to wherever we’re going and find new toys to play with. He’s been so cooperative (during the assessments at least), and I’m so thankful for his willingness to go to so many new places with so many new people.

GT-Grandpa Therapy

Last week I was feeling a little stuck in a rut, and I didn’t have much on the horizon to look forward to get me out of the rut. Will was having a hard week and I commented to Cortney about how frustrating it was to be in the waiting game and that we really couldn’t start Will on any type of therapy plan until the district’s decision was made. And in the meantime, it just felt like we were wasting time when Will needs help now.

We went about our normal Saturday duties, periodically talking about what we could do for Will in the meantime when Cortney said, “Will really needs to be with your Dad.”

I had just been thinking the same thing.

We talked about it for about 2 minutes, and both agreed that Will being with my Dad was the best possible scenario for him at the moment, and immediately bought 2 flights to Long Beach.

This whole thing is going to be hard to explain, but I’ll do my best. My dad has a relationship with Will unlike any other of his grandchildren. They’re like Ying and Yang. They just “get” each other. And I think it started when Will stayed with Grandma and Grandpa while we went on a cruise when I was pregnant with Duke. I remember calling from Cabo San Lucas to check in on him and I was completely expecting my parents to sound exhausted, but my dad energetically answered the phone and after I asked the usual about how Will was doing, my Dad said, “You know you don’t have to call, he’s fine!” Ever since then, when my Dad calls he is always anxious to talk to Will and is always planning of when they can see each other again.

A few months after that, my dad asked how old Will would have to be to fly to CA alone—keep in mind that Will was just two years old at the time. Grandma and Grandpa started mailing Will postcards and pictures and Will was ecstatic to get something from “Papa”. Will can sit on my Dad’s lap for hours and read stories or work in the garage all day handing screws to my Dad while he builds something.

Dad is really quiet. He’s kind and giving and genuine, but he’s not one for a lengthy conversation. He’s also very handy and loves to fix and build things. And the more I think about Papa and Will’s relationship, I think one of the reasons they go so well together is that they share the same weaknesses and strengths. Will isn’t capable of a long conversation, but the kid can do almost anything with his nimble fingers. So he seems like the perfect match for Grandpa—less talk, more garage projects.

But it’s more than just sharing common interests. They just seem to be in heaven when they’re together. Will rarely acts out while he’s with Papa and we can completely credit Papa for weaning Will off binkies and getting Will to consistently poop in the potty—something we had tried multiple times before. Papa was the first adult Will knew by name, other than Mom and Dad.

It’s such a neat friendship. I love watching them together.

Considering Will’s current circumstances (a major move, switching schools, in need of therapy but can’t get any yet, low on friends, etc), being with Papa—a constant in his life—seemed like the most calming influence we could give to Will at the moment. We’ll be spending the next 10 days in CA for GT—Grandpa Therapy. Cortney and I both laughed that GT was probably more productive than Speech/Occupational Therapy, anyway.

This also perfectly coincided with a business trip Cort was taking to Santa Monica while we were there so we could get some Dad time in, too. Mom and Dad even offered to take the boys (so thoughtful) so I could spend a few days in Santa Monica with Cort. This means I will be spending most of the day in bed or lounging by the pool, reading, writing, and watching trash TV.

I feel relaxed just imagining it. Come to Mama!