Medical Diagnosis

So I took a long hiatus from writing due to my time and creativity being drained elsewhere. I’ll briefly recap the last two years as quick as possible. My energy and efforts went into running and building a thriving dance studio and competition team, coaching poms, getting pregnant, and having a 3^rd child. Meanwhile, my father is in remission from cancer, and now I have sold the studio and Jason has taken a job in Kansas City, we sold our house in 24 hours and are in the process of finding a new one within the next few weeks and packing. Finally, this year Cruz was transitioning between schools and therapists and programs and we went through the full blown evaluation process and finally got a medical diagnosis of Autism. Since this is autism awareness month and I am procrastinating packing boxes and full of emotion I thought it might be time to jump back in the saddle.

            Those I have spoken with have asked me how I ‘feel’ after getting stamped with a label. Given the fact that our lives are chaotic right now and I am pumping postpartum hormones I am not experiencing a different type of feeling, just more intense feelings. Everyone also immediately asks me if I am surprised. It’s hard to explain. It’s kind of like seeing a storm roll in, watching the news and seeing the radar, hearing the wind and rain, knowing you are in a tornado watch, then a warning with sirens blaring but then the tornado actually touches down on your street. Was I surprised? There were warnings and signs but yes there was still a part of me that was surprised. So many of his therapists didn’t think he fit the criteria. Granted they said he is very A-Typical. He doesn’t fit a clear-cut mold. They said it took three masterminds with PhD’s to try to understand his learning patterns and how he organizes his thoughts. Which made me feel like a genius and explained why things had been so confusing with him for so long. Every other therapist or teacher always told us ‘he is really interesting’. I did feel validated for my frustrations over the last five years. I felt relieved to know he will be able to qualify for services and resources. I felt sad. I felt really glad we had done so much early intervention because this kid has grown and changed and learned so much the last couple of years. I felt thankful and blessed for people like Brooke Allen (our behavioral therapist and great friend), Deborah Crooke (his amazing former teacher), Donna Ramsey (amazing caretaker with tons of knowledge), Monty Clark, Holly Radar, the list could go on and on of those who poured so much into helping us. I also feel better equipped to fight this battle. Now that I have more knowledge and more resources, nothing can stop us from doing everything we can to help our son.

We were scouring through thousands of photos and videos on the computer the other night in hopes of finding one picture of the house we needed. I saw a montage of this beautiful complicated silly boy from birth to present. I saw video clips of him throwing fits and screaming, clips of him trying to communicate at age 3 when all he could do was still sign. There were videos of him doing bizarre sensory seeking things. Pictures of him in treacherous places, in underwear climbing trees, hanging from things, lining things up, and finding joy in some simple pleasures like laying naked on a leather chair or rolling in a bin of bird seed. The puzzle piece fits. The famous “blue puzzle” piece outlines much of his behavior but he will not be defined by any one thing. Autistic is one word in a list of many beautiful and strong words that describe my beautiful son. For my friends and fellow parents of kids with autism you know how important schedule, routine and consistency is. Pray for us as we uproot and plan to move to a new city, new house and start a new school with new therapists and are back in the process of navigating life and learning through the eyes of Cruz.

Birthday Boy

Four years ago today began an unimagineable journey. After days of labor, miles walked around the halls of L&D, hundreds of lunges and squats, 18 hours of pitocin and finally an emergency csection Cruz Kingston entered the world and changed our lives forever. Even during labor and delivery he kept us guessing, chose to do things his own way, and kept us on our toes. Much like every mom would agree, in four years I have learned so much.  In four years and still to this day I have probably only slept through an entire night a handful of times. I often feel more like a zookeeper than anything else trying to contain messes, find my kids swinging from the trees and yes ducking the poop being thrown at me. I have been an interpreter, an advocate, a nutritionist, a quickly schooled in all things 'Special Needs'. I have learned that in addition to all of the first time mom nuances and experiences, I have learned about terms, conditions, therapies, labels, and diagnosis' I had never heard of before...

My heart grew double that day. Not just for my son but for children everywhere. He tapped into this unknown resource of love that literally softened my heart to the world. There have been so many tears of frustration and so many celebrations and praises for improvements and growth. There's no words to describe this complex little guy. As I type this I was just punched in the back and then peed on. He keeps me on my knees in prayer for sure. While we are still learning more and more about him, despite the frustrations, my love for him never changes. Which in turn gives me greater and greater understanding of my my heavenly father's love for me. I am constantly reminded of my flesh, my selfishness, and my faults. I could go on and on and on... on this day I am thankful for grace, for second chances, and forgiveness... from Cruz each time I make 'sad' choices, each time I snap at him, each time I mess up. He is ready to hug. I am so thankful.

Facing a Giant

I apologize for the lack of posting the last two months. I think mentally I needed a hiatus. There have been massive changes in our lives that began gradually. The schedule got busier and I kept putting it off waiting for something spectacular to write about. How many times can I write about Cruz being naked or pooping on the floor? Although life was fast and furious it was good and we were just sort of  coasting from one activity to the next. The calendar filled up quickly and I was waiting for something noteworthy to actually make me pause at the computer long enough, without screaming distractions all around me, causing me to shift my focus inward.  There has been a lot of noise, a lot of activity and a lot of rushing around in an attempt to do everyday life. Our "Super Stars" program this summer was a huge success and deserves an entire blog of its own. Cruz is doing exceptionally well at school this year. He switched to afternoon preschool and it seems to be a great fit for him. His medications are helping tremendously to control his aggression and anxiety. My dance studio is growing like crazy and I feel like I am just keeping my head above water balancing everything in a perfect harmony. Then last week the monumental giant landed in our lives that literally stopped us in our tracks. The perfect chaos screeched to a hault as we learned that my dad was diagnosed with cancer. Let me first paint a picture of who he is for those of you that may not know him. Often mistaken for Robert Redford and frequently asked for an autograph, his charm and charisma know no limit. Witty, quick and sarcastic his humor is one of the things people notice first. He reitred from Oral and Maxilofacial surgery this past year and between his career and his personal life he has impacted so many people. The picture of perfect health he has been active, doesn't drink or smoke, golfs rain or shine, loves people, loves the Lord, and our family. He is brilliantly smart, and has the most giving heart of anyone that I know. He has always been willing to talk to anyone, give to anyone, spend time with anyone in need, and has a heart of gold. He is the foundation of family. Full of wisdom and advice, whether its wanted or not ;), and is a giver, a teacher, and a focused goal oriented leader. Countless people are now shaken with this unbelievable news that is literally shocking.

A couple of months ago he noticed that the lymph nodes in his neck were swollen. After visiting his primary care physician they decided to give it a couple of weeks to see if they naturally would go down. Surrounded by a small group of friends from church last Sunday evening they prayed for healing and for wisdom that he would know what to do. Over night the gum ball size nodes grew and grew and grew. By 7 am it looked like a baseball sticking out of his neck. They went to the ER and from start to finish saw God's handprint upon the entire process. The nurses, doctors, and staff were amazing. He was able to see his ENT, who is also battling lymphoma, that same day. Super long story short, they decided to schedule a biopsy for Wednesday. My sister drove down that day and we all waited in anticipation to hear from the doctor in the waiting room. Mind you this was the first surgery he had had since 1985 as he is the picture of perfect health. Mom and Emily and I sat around a table in the consulation room when the doctor came in. "Definitely looks like lymphoma, we'll know more when the pathology comes back. Probably B Cell lymphoma. It looks very aggressive but that can be a good thing because the cancer will immediately suck up all that poison from the chemo and probably respond faster."

We all felt assured with his response. We met him in his recovery room and shared the news. It was an emotional time. His humor didn't skip a beat. Although he knew he was facing a battle and we all knew he was facing a battle, we collectively prayed and asked God for a miracle truly believing He was going to heal him. Fast forward two days to a rainy dark and gloomy Friday. Not one to mope or stew dad hit the golf course with a friend. As the call came in on the 8th hole, he stepped aside to speak with his doctor. The bad news got worse, much worse. It's not lymphoma. Its called Poorly Differentated Squamus Cell Carcinoma. This was the worst case scenario. 'The worst of the worst'. The doctor continued to tell dad that 'Its going to be BRUTAL and that he would wish it were Lymphoma'. Hanging up the phone he shared the news with his friend who suggested taking him home. Nope, not my dad. By God he was going to finish that golf game even if it was cold and raining. "What good is it going to do to go home? It will scare Janna... I don't want to just sit around and cry."

He is strong. He is brave and courageous. He would give everything he has for his family. But he was delivered a serious blow. We are all completely shocked, it just doesn't make sense. We need a miracle. The doctor said that 'it didn't look good'. Tuesday he will get his PET scan and we will have a better idea of what the face of this giant looks like. At this point there is a lot of unknown. There is only one thing that I know. God is in control and God is a good God. I can stand on those two truths that I have relearned over and over and over again. Our family has been through a lot of things and there is a lot that our fragile human minds can't comprehend. But we know that He is able to do beyond what we can ask or imagine. He spoke the world into existence. He is bigger than any disease or any cancer. As a family we truly believe that God's going to miraculously heal him. He may have to walk this battle out with chemo and radiation but we are believing God for a healing. Please join us in claiming this over my dad. He's the most amazing dad and grandpa in the world. God's not done with him. There are too many people that need him. I need him, Jason needs him, my kids need him. My sister and her family needs him. My mom needs him. His friends need him. Our community needs him.  We will walk this journey openly with anyone that wants to be a part of it. Please pray for strength, for peace, rest, and above all healing. To God be the glory.

The fine line

 I started to write a post last night and really share my heart on some struggles and then the sarcastic side of me just took over as I replayed some of the days events in my head and imagined Cruz's future. To break things down for those that are new... Cruz needs structure. Not just structure, a ton of structure. Plus sensory stimulation and adrenaline. Oh and well constant supervision to keep him off of fences, out of the street, clothed and within view. Ever wonder what it was like for Evil Kneival's mom as he grew up? I can imagine those conversations cause I'm pretty sure they are about the same as the ones in our house. You can't help but watch some of those freaks, sorry, 'people' like that guy that just walked a tight rope over Niagra Falls without wondering what is wrong with them. Really, I glanced over ocassionally out of my periferal vision while it was on tv and listened to comentators discuss his desire for adrenaline. "What would make someone want to do this?" I can't fully answer that question right now but for 5 million dollars I would let you start a home study with Cruz to watch him try the same thing at home. Sure, the top bar across the swings is no Niagra Falls, unless you are 3 feet tall and weight 30 pounds. That's right just got back from the Neurologist, still only 30 pounds. Plus add to that little adventure being naked, which ups the danger factor for anyone. Oh and how about every now and then trying it with eyes closed. No lie. We can even throw the sprinkler underneath for the added effect.
I would like to think that I will be like Michael Phelps mom someday. Sitting in the stands wearing a t-shirt with my child's face on it, cheering him on as he channels all of that wild energy into accomplishing a life long goal. I could go ahead and wear the shirt now and cheer on the side but it would probably scar him for life. Mrs. Phelps would cry after each swim and during each interview recalling how her son had issues similar to Autism and overcame all odds. I watch the men's gymnastics team and listened to the crowd cheer at their amazing ability to commit to running jumping and throwing their body throught the air to land without breaking a bone. Sure its amazing but let me remind you they are trained and on a spring board floor. How about trying it barefoot on gravel, and of course naked. I watch them attempt the pommel horse and laugh imagining how that event first started. Most of these things had to have been dares between friends. Its easy to imagine the origin of swimming and track races. That concept doesn't really twist your mine. But the pommel horse? That's a different story. I imagine two men long ago, pick a century it probably doesn't even matter, standing by their horses. 'Watch this. I can mount my horse, hold both sides of the saddle and spin around on my hands.' 'Oh yeah, I can do a handstand on the saddle and then flip off.' Before you know it a crowd has gathered and their wives roll their eyes. I can probably google it and set my mind at ease but its way more fun to imagine. Or maybe it was two dudes and a barbed wire fence. 'Bet you can't hold these two fence posts and spin as fast as you can without shredding your legs and bleeding to death.' 'Challenge accepted'. All I know is that Cruz would have been one of those two guys. Here, maybe if I stack trucks, sticks, rocks, and a book like the leaning tower of pisa I can climb on it, balance on one foot, and then in an act of complete defiance rip off my diaper and throw it at my mom just like the true animal I am. He is already setting himself up pretty nicely for the high bar, parallel bar, uneven bars and our shins can attest to that. If you come by our house, don't prop your feet up on anything unless you are prepared for a small fast moving blur to run at you and flip over your leg and give it a good Indian burn.
"Oh wow, Lindsey are you anemic?" "Oh no, the bruises are from my son, thanks."
There is that fine line between daring and stupid. You watch those youtube videos and cringe when you watch teens attempt really dumb things like jumping off of a roof, skating behind a car, etc. I used to roll my eyes at those videos and laugh. Now its like looking at a crystal ball and I cringe. Yes, yes, he's still so young surely he will out grow some of these crazy things. I'm sure that's what Evil Kneival's mom said, and David Blaine's, and probably Mrs. Wallenda. I probably should've googled first to see if she was a member of the act. 'Yes, don't worry Mrs. Kneival, he's just a toddler. This is just a phase. He can't have the desire for speed and adrenaline forever' Don't you think Mrs. Blaine's mom wondered when would lock him self in a shoe box and try to break out of it at age 2? I don't have to wonder because Cruz did that yesterday. Yep, found a tupperware storage container and hid in it for thirty minutes trying to lock the lid on top. If you decide to sit on the floor in our home for any reason, you must be prepared for this one because it will catch you off guard. Cruz will suddenly climb up your back and try to stand on your head and balance, like a totem pole. I wonder how early they accept applicants at Cirque du Soleil. I hope we can harness this and send him to the Olympics in 2028 on the gymnastics team or the swimming team. Of course he may be better fitted for the winter Olympics. The luge seems right up his alley. He is more of a one man team after all and he would like the deep pressure of the suit. We will probably try it this winter down our street if we get a good snow. "Here son, let me pour this EVOO all over you and push you down the hill, just keep your head down." I wonder how that one originated. Probably was an accident when Mr. Luge was working under his carriage in the winter. Oil spilled all over him and he shot like a rocket down a hill and around the village. Everyone gathered to watch. His wife probably was standing there ready to remind him what a loser he was when the crowd erupted in applause and cheering and other men formed a line to try it. Like I said, there is a fine line between daring and stupid. Sure he's cute now when you see those little naked cakes running down the street with a helmet on, bent on speed and destruction, hopping chain link fences and banging on your front door asking for candy and gum. In thirty years you would call the police and lock your doors.... stay tuned for the next adventure. Tomorrow is the 4th of July... this will be interesting.


This is a disclaimer. We love the Olympics and are of course amazing by the talent yet we are not sponsored by them to mention them in our blog and have no intent of using their names, images, and logos for monetary gain. Especially since we have 120 people regularly tuning in from other countries around the world. This is purely a sarcastic attempt to process through daily drama and laugh instead of cry.

The latest...

In an ongoing never ending attempt to stimulate the senses and provide a rush of adrenaline, my little Mowgli (Jungle Book, for those of you that don't know-- i.e. my husband) will try just about anything. This summer alone I've already had to pull him off the top bar that the swings hang from and rescue him a few times from the chain link fence that his shorts got caught on while he attempted to jump it. The following pictures capture events that occured in less than 24 hours. 

Above, he tried to squeeze between the narrow tree limbs and below he rolled around in a tub of birdseed as he does now on a daily basis.

Not sure if anyone else has ever tried to climb a Rose of Sharon Shrub, but this kid did

He has been a handful the last few weeks... Hence the lack of posting on my part. We are planning on meeting with the Pediatric Neurologist in 2 weeks to re-evaluate our current situation. Over the last few weeks he has tried to 'escape' and run away almost every day. I have caught him naked on the loose more times than I can count.
Yesterday, I had been playing with the kids in the backyard for a couple of hours when I walked inside momentarily to use the restroom. Upon my return I found Wren playing quietly alone on the screened porch. I immediately had a dropping feeling in my stomach. I raced out the screened porch to find a wagon pulled up next to the gate. "Franklin, where's Cruz?" I asked the giant dog. He replied only by staring intently out the gate. As I looked over towards the gate I saw a t-shirt, shorts, and then a diaper. That crazy little dude stripped down naked before hopping the fence. I ran out front and looked up and down the street. Nothing, no sign, no kid, I couldn't hear anything. Wren and Frank slowly walked out behind me. Some help they were. "Frank, where's Cruz, go find him" Frank layed down on the ground and rolled over. "Wren where did Cruz go?" Nothing. She was pre-occupied with her tricycle that was still in the garage. I ran up and down the street. "CRUZ???" I yelled at the top of my lungs. "Cruz say 'HERE'... CRUZ , WHERE ARE YOU?" My eyes darted back and forth. I saw a postal worker at the end of the cul-de-sac and ran towards her. "Excuse me, have you seen a little boy running around?"
"Yes,"she replied. "I think I saw one run that way".
I ran inside to grab my shoes and threw Wren into the stroller so that we could sprint around the block to find him. As we took off running towards the end of the street I heard the Postal worker yell, "Here he is, I found him!"

He had gone across the street to a neighbors, opened their gate to their backyard, gone into their back yard and was trying to climb their fence into their neighbors yard to see their dogs.

Seriously??
"Did you not hear mommy yelling your name?" He had no idea that he was in the wrong. I was livid. Then to make it worse, he made me chase him. For like 20 minutes. It's one thing to make me mad, it's another to make me chase you. The whole 'hide behind a car/tree/fountain/ anything to make me chase you really REALLY REALLY REALLY makes me mad. This has happened literally 5 times in the last two weeks. Needless to say we are going to order some kind of I.D. bracelet and hopefully implement some new behavioral strategies.

Friends

As soon as we knew that Cruz had special needs, we knew we wanted to do more to get involved in the community. We weren't exactly sure what that looked like but we knew God had big plans for the little guy. We knew we were given this little guy to learn from him and in turn help others and give back. It's amazing to think of all of the times Cruz has pushed my buttons, how drained I have felt, and how I longed for some type of program that might help be another outlet for him. It's amazing to see how God stirred it in our hearts and immediately brought people into our lives like Deb Fusek and Brooke Allen. In just two weeks the first ever Superstars program will begin. This summer program for special needs kids will focus on social skills and preparing kids for the classroom. 

It’s amazing to think of how many families are going to be blessed, how many kids, siblings, and parents are going to be able to grow and connect. It’s not just the kids with special needs that will benefit from this program. Their siblings will greatly benefit as they are learning how to share, play, and exchange with other kids. Their future classrooms will and peers will benefit as a foundation is being layed for appropriate behavior. Parents will benefit not only watching their child grow, and continue to work on listening skills but will have a chance to meet other parents and connect with them in ways that only parents can.

When you finally realize that your child has special needs one of the first things you wonder about is the quality of life that your child will have. Everyone wants their child to fit in, to make friends, to be able to sit in the classroom with their peers, to be able to participate in extracurricular activities. Everyone remembers the triumphs of our youth. Whether its playing with friends on the playground, playing sports, being a play, riding bikes, swimming…. Everyone wants their child to be able to do these types of things. It is this type of class, this type of therapy that will help set them up for success.

The Superstars program is being created to fill a gap in services offered in our community.  There is no other Social Skills and Movement class offered in our area for this age group of 3-7 year olds.  This is a very important window of time in the development of children.  The children's faces you see in the pictures below are some of those who will enjoy the lasting impact of the Superstars program. This type of program would normally be out of reach since most insurance plans do not cover developmental disabilities, leaving many families to struggle to pay out of pocket. This is why POINT Performing Arts partnered up with The Reach Effect to take in donations to lower the cost to families....