Our Journey to The Piedmont School

For us, choosing The Piedmont School was no contest, we knew that public school just wasn't an option for our son.

We tried it, Lucas started school when he was 2 1/2 years old, and went through the 2's and 3's class at his local church preschool before we really saw any differences that stood out. During his first actual pre-kindergarten year though, we noticed he wasn't learning like the other children, his papers would come home undone, and his book bag would just be filled with taped together pieces of paper that he played with while the other children did their work. By the end of the year, his teacher recommended that he repeat pre-k, becasue he wasn't emotionally ready, and he definitely wasn't academically ready.

So once again, after lots of thinking and consideration, he tried pre-k again. We thought this time it would be different, maybe last year he was just too distracted; his younger brother was very sick and going through lots of long hospital stays and treatments and it was very hard on Lucas. But by halfway through the year we knew it was not different, and he was really struggling. We could see how hard it was for him to just simply write his name, and he was not able to keep up with the other children. He still did not know his alphabet or or how to write any letters. He could not remember multi-step directions for schoolwork, and he needed the constant one on one attention to complete assignments. There were 20 other children in his class, and he was falling so behind.

So by the time we had his parent/teacher conference we were worried. We were told that although he still was not ready for kindergarten, the school could had to send him on. This is when we started our journey to find the perfect school where he could learn and grow.

Luckily for me, someone mentioned for me to check out The Piedmont School. I had actually never heard of the school, I was familiar with Noble Academy and that seemed like a good fit and what we were looking for. But, The Piedmont School was closer and was smaller so we decided to look into it.
It was by far, the best decision we made. I went and talked to the Dean of the school and the kindergarten teacher and was so impressed. Lucas even got to go and spend a day as a kindergartner, and he loved it. Which to me, really meant something.

Getting him to school over the past 2 years had become increasingly harder, he was very aware of his differences and that he didn't know as much as his classmates. He was frustrated, which only added to behavioral problems we were facing. And we were getting no where with his education. So we knew we had to make a change.

Once we made the decision to send him to The Piedmont School, we had his psycho-educational testing done. Through his testing, it became abundantly clear why he was struggling in school. And why, sending him to The Piedmont School was such a good idea.

His testing showed that he not only showed us why he was struggling but just how far behind he was compared to other children his age. It was an eye opening experience for us, we knew he was having trouble but we were not expecting the outcome we got. Lucas was 6 years old and performing at a 2 year old level, despite being in school since he was 2 1/2. To be honest, I was heartbroken.

Lucas had been diagnosed with Dyspraxia when he was 5, and little did we know then what a big impact it had on him or really anything about the disorder. He was also diagnosed though his testing as having dyslexia, dysgraphia, ADHD, Sensory Processing Disorder and anxiety issues.

We know that public school is just not an option for him right now, the strides he has made while in The Piedmont School are remarkable. His class is made up of only 4 other children so he gets all the one-on-one attention he needs, he learns based on a plan that is made just for him and he gets the accommodations he needs. His teacher is awesome and goes beyond what I ever expected, and he LOVES her. We still have struggles getting ready to school and some days he just doesn't want to go but once he gets there, he has fun and he learns without the constant fear of being different compared to everyone else.

Choosing The Piedmont School was definitely the right choice for us, Lucas still has a long journey ahead of him, and he has many obstacles to face and overcome in his life. But for now, I know that as long as he is going here, education is not one of them.

For information on The Piedmont School please visit their website. The Piedmont School
And for more information on Dyspraxia please visit Dypraxia USA

Holding back tears

As I am sitting up watching the show Parenthood, trying to hold back tears as Max is having a breakdown because he can't understand why the other kids laugh at him.
It hits so close to me, I have these fears fears for Lucas. He tries to make friends and he tries so hard to play with other kids he doesn't know.
I worry so much that this will be him in the coming years. That these kids will make fun of him and laugh at him, that they will think he is weird. I worry he will think this of himself. He doesn't have the capability to understand the complexities of relationships. He learns by memorizing and there is just no way to memorize every social interaction. He already has moments where he says he is weird and he hates himself. He has told me multiple times no one will come to his birthday party.
I feel so bad for him. I just want to hold him and protect him forever. In so many aspects Dyspraxia can be a gift but in so many ways it can be a nightmare. I just wish life was easier for him. I wish people weren't mean.

Just a reflection

As I sit back and reflect on how much my boy has grown this year, I can't help but still worry about all the struggles he has yet to face. He is over halfway through his kindergarten year, and I am so proud of how well he is doing in school. I am thankful we found a school that fits his learning style and can accomadate to all the extras that he needs in school. Teaching him isn't easy, but again it isn't easy being him either.
He struggles so much with everyday life, the simpliest things can ruin his day and honestly make my life hell.
But I am so proud of him and the little man he has become. He loves his brother and for the most part, he really tries to get along with him. I know he hates when Zach accomplishes something that he hasn't yet mastered. And he gets his feelings hurt so easily, he is just very sensitive. I think this is hard to explain to people. He literally wears his emotions on his sleeves, he can go from happy to sad and back to happy again within minutes.
I worry about his future.
School is hard for him, friendships are hard, life is hard. Our weeks are filled with therapy appointments, psychologist appointments and school. I hope all these therapies help him in the end. I hope they help him cope with his feelings and learn to manage his anxieties and behaviors.
I hope he knows how much I want him to succeed, and how much I love him.

Vday swap box

      Let's show some Valentine love, back in January I joined up with Rachael from The Rachael Way, Ashleigh from The Darling Prepster and Mandee from Life, Chaos and Quotes for a Valentine's Day swap box. I usually don't get any gifts so I thought this would be fun.
 

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I got matched up with an awesome blogger and new friend Ellen from Ask Away Blog

We got to email each other for a few weeks, get to know each other's likes and then pick out a Vday gift for them. It was really a lot of fun. She is awesome and her blog really rocks so make sure you check it out!

 

I loved my gifts she picked out for me. And they all came individually wrapped in pretty pink paper. And also a sweet little note (or for Vday, we will call it a love letter) 

 

 

I loved opening up all the little packages, and my boys even helped. First of all let me just say, she really nailed it. I never get anything for myself or take time for myself so I needed all of these gifts.

 

I have already worn my shirts several times and my lotion stays in my car, because I apparently always realize my hands are dry when I'm driving. And there was a cool little strap you hook to the back of your phone to help you hold it one handed.. yeah totally love that.

Thanks Ellen!

 

                                                                                                          

the day my life changed

The day that changed our lives took place in the hospital where we had taken Zach for an intestinal transplant evaluation. He had been surviving by TPN through a central line in his heart for the past 8 months, and before that through feeding tubes in his stomach and intestines. He was only 2 years old, and had spent most of the past year in the hospital without being able to be a kid. And even when he was out of the hospital, he was confined. Confined due to tubes in his body and iv lines being hooked to heavy bags of liquid nutrition and bags of fluids, and due to the risk of illnesses because his immune system was so greatly compromised. His IV pole followed him around the house, from the time he slept in his bed to the bits of time he had energy to play. He was always hooked up to some sort of pump.

Zach had intestinal failure with pseudo obstruction episodes, which meant that his intestines were no longer working. His stomach didn’t absorb or digest formula anymore and was hooked up to a bag to drain the fluids out of it 24 hours a day. And his intestines no longer tolerated the enteral feeds except at a very slow rate to basically try to keep infections down. When his pseudo obstruction episodes hit, he would vomit and gag uncontrollably for hours and days, and be in tremendous pain. He would have to have his stomach hooked to a suction machine to try and prevent some of the vomiting.

His days at home were always short lived, the fevers and infections always returned, FAST and more furious than before. His hospital stays included blood transfusions, surgeries, and high powered IV antibiotics. Never the life we imagined for our sweet boy. We took him to several hospitals in attempts for answers, and that is when our lives changed.

He had been sent to Pittsburgh for an intestinal transplant evaluation, a very invasive and dangerous surgery. There we saw a neurologist who performed several tests and told us that the probability of Zach having a progressive and fatal disorder that in most cases kids diagnosed this young don’t live past 5 yrs old, was very high. And at that point, the doctors decided he was not a candidate for a transplant, they could not do a transplant knowing that it would not make a difference in the end. They decided there was nothing they could do to help us.

Shortly after that, we heard from Make a Wish. Zach was going to get a chance to be a kid, and to forget about all the illness, and hospital stays and medications for a week. Remembering the day they came to the house to ask this sweet 2 year old if he could have or do or be anything, what would he choose. He knew and answered without a doubt that he wanted to see “Mickey Mouse House”. The smile on his face was priceless. He wanted this, he needed this so much.

During the months while we were waiting on his Make a Wish trip to be finalized and planned, Zach was hospitalized several times a month due to sepsis. He spent many days in PICU hooked to machines and pumps, and having his central line replaced had become routine. But we also learned that his liver was showing some damage from the TPN and he was losing his vascular access. He already had lost of his IV access, so when it came to removing and replacing his central line, it was very risky.

So his doctors decided that though he was not a candidate for a transplant, we could try intestinal rehab in hopes we could force his intestines into working again. Which basically meant that for 2 months, they slowly went up on feeds through his intestines to force them to work. So for us that meant, sitting beside my sweet boy as he vomited, gagged, screamed in pain and slept and not being able to do anything to help.

Zach had been through so much in his short life already and this seemed like to us total torture, but we went through it. It was our only option at this point. If he lost any more central lines, it could be the last. Every replacement meant another surgery, another anesthesia, another race to get it him surgery before his sugar dropped to dangerous levels. Every infection meant new bacteria, more antibiotics and antibiotic resistant bugs. He was in such a dangerous place with his health. When he got sick he could go from normal to 105+ fevers in a matter of minutes, and with his fevers came his autonomic dysfunction symptoms.

So we went with the plan, we drudged on through the pain, through the vomiting, the screaming, the heart break. It was the longest 2 months and so hard to sit and watch your child suffer.
In retrospect, I am glad we did, he survived. He got to come home with no central lines, surviving
on enteral feeds alone.

To explain my feelings during all of this, is simply not in my capability. To be told that your son would not survive and to see him in the state he was in so many times was unimaginable. I have never been a person to show my emotions to everyone. I would wait till I was in the car on the hour drive back to my see my other son, who would have to go days without seeing me, and I would cry. I found myself in love with a song by The Band Perry, If I die young.
Something I never wanted to imagine but was so much a reality. And I prayed, it's all I could. I felt helpless and alone. Trying to talk to friends or family was a mess, no one completely understood what I felt.

February 13th marks 2 years since Zach came home from the hospital after his rehab was over. 2 years since his central line was removed and he got his life back. 2 years of not being afraid today would be the last day I got to hold him or see his sweet face. 

I signed up for what??!!!

 

Yeah not sure what I was thinking when I signed that paper. I have never done a hike before, well not one that I wasn't just leisurely walking along. But I just felt like this was calling my name. Its new and different and completely out of my comfort zone. And the fact that I will be alone, 4 hours from home. Not alone in the sense of no one is around because there will be 75 of us hiking together. But that's 75 strangers.

My family will be at home, this is my journey. I feel this journey means to me than I can even put into words. 

This hike, is a commitment of my gratitude for in my opinion the best organization. 

Make a Wish

A completely non profit organization that grants wishes for children with life threatening 

medical conditions. 

They did this for us. If you are wondering why I am so committed to giving back and helping them raise money. 

This is why...

Zach got his wish granted in October 2012, he wished to see Mickey Mouse House. I can't express how much that week meant to us. The smile on his face meant he was better. 

Make a Wish does more than grant wishes, they bring hope and joy to families. They cure cancer and other illness for a week. That week of no doctor appts, no hospital stays, no thinking about what its or not feeling well. They give children a week of being a child.
 

 

 

This is the 2nd annual Trailblaze Challenge

 That's 24.1 miles in one day along the Bartram Trail in the NC mountains. 

It is going to be strenuous, hard and life changing. But I have no doubt I can do it. I always think about everything Zach went through and always had a smile on his face. He is my inspiration. 

The goal of the Trailblaze Challenge Is to raise $2500 to help grant more wishes. So please help me.  Any amount of donation is greatly appreciated and 100% of the donations go directly to Make a Wish. 

You can go to my fundraising page Crystal Voss Trailblaze Challenge and read more and make a secure online donation. Or you can always mail in a donation, just click on link and print out form and mail it in.
Donation Form for mail

About Bartram Trail
  Located near the mountainous towns of Franklin, Highlands and Nantahala, the Bartram Trail in North Carolina meanders around 78.4 miles of the approximate route 18th-century naturalist William Bartram journeyed in North Carolina in the 1700's. The Bartram Trail boasts some of the most scenic mountains in North Carolina with elevation reaching 5,385 feet, providing hikers with spectacular views of ridges and valleys.

Our Section Of The Trail
The trail (24.1 miles): Commencing at Appletree Campground in the upper Nantahala Gorge to Nantahala Lake, the trek ascends and briefly joins the Appalachian Trail from Winespring Bald to Wayah Bald.The top of Wayah Bald, at 5385 feet, is the highest point on the trail which then descends the Nantahala Mountains finishing the adventure outside Franklin, NC.*The 15.6 mile option will start at Saw Mill Gap and end outside Franklin, NC.

About Make-A-Wish
For children who face the overwhelming odds of a serious medical condition, the bad times can be truly devastating. Make-A-Wish® exists to remind kids of all the amazing possibilities of life and to help them through the most difficult parts of their journey.

Fundraising Page

Please share my page with everyone you know!!