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Moving Forward

When the pieces of the most meaningful puzzle fit together to create more than you could have ever imagined… when you know you fought the good fight for the right reasons and what you found is at least, by neurotic research comparisons, the best option….and when you finally let go and surrender… and then God basically shines a flashlight in your face and shows the way (which also happens to contradict your obstinent, original plan)… that’s what we have been given…

It’s been a long few weeks of school interviews and applications.  Just like four years ago, I have confidence regarding the direction to turn in the next season. 

When I left our first meeting with Stepping Stone in November 2015, I cried in the parking lot because that meeting was the validation I needed to know that what my heart was telling me was true.  I needed to stop pretending that everything was perfect.  I needed to let go of the past and move forward.  At that time I was dealing with life changing loss and guilt.  I was going through stages of life that were supposed to be monumentally celebrated and happy and I felt like if I did that I would be betraying and hurting others even more.  I was not dealing with my situation well.  At the same time, I was beginning to feel hopeless in regards to how to help and understand my son.  I appreciated the resources we had available to us in Texas, but I knew they weren’t enough. What I had just been shown for my son at Stepping Stone gave me a new purpose and commitment. I had an opportunity to change Grey’s life for the better.

Spring 2016 – just a few months after we moved to Arkansas. They weighed exactly the same here.

I was in graduate school and was managing a corporate wellness program for a wonderful company with about 1200 employees.  I had an offer presented to me to work with a client with 40,000 employees and nearly double my salary.  Problem was, that opportunity was in Fort Smith, Arkansas about 35 miles from where I grew up.  I told my sister about the job opportunity and she recommended I check out Stepping Stone.  So, David and I did.  Resources I couldn’t have even dreamed of for Grey at that time were all of a sudden on the table.  I would not have been able to move and accept the job opportunity no matter how much I wanted it had Stepping Stone not been a part of the deal.  Grey needed his school even more than I needed self-forgiveness or any professional advancement.  So many things just fell into place.  I felt like divine intervention was in the works.  With David’s support and a lot of fear, faith, and hope… I moved myself and my then two and three year old babies to a little town where I knew only a couple of people three hours away from him and a job that had brought me so much joy, fulfillment, and friendships.  About six months after moving, my job based in Fort Smith was going to be eliminated because my client was selling their company.  My employer, not my client, made a position that had just become open in Chicago a remote/work from home position for me so I could stay in Alma and take care of my family.  Again, divine intervention…. and a very compassionate, considerate boss.  Two years of working from my computer at home and having barely any adult companionship nearly made me lose my mind… fine, I absolutely lost my mind.  I was terribly isolated, which was terribly hard for a girl that had not only had a career built on relationships, but was also very involved in the community I had been a part of. I created a new plan and decided to leave my position and focus on my family and the new calling I felt led to.  A year and a half later, I don’t regret my choice at all.  I am very thankful that I had David’s support to leave work.  So, here we are coming up on our fourth anniversary of being in Alma and my, oh, my, how life has changed.   Greyson graduated from Stepping Stone in June (woohoo!).  He could have gone to kindergarten this year, but Stepping Stone had a change in regulations that let him stay for another year, which was a blessing I couldn’t pass up.  Well, that is until now. 

Summer 2016. You can see the impact of his brain injury by looking at the left side of his face. His face does not do that anymore. Early childhood intervention helped physically, mentally, socially, and emotionally. He received four days of OT, PT, and ST for nearly four years, an individualized education plan, and a ton of love at Stepping Stone.

When I left a school interview a few weeks ago, I cried the same tears as I did after leaving Stepping Stone for the first time, in utter disbelief that everything Grey needed and more than I ever knew existed could be given to him.  (David may have also.)  And then, every specialist I met with thereafter reaffirmed that what I believed I found to be too good to be true really would be best. 

In my work as a wellness coach, I would start most sessions with reminding clients that they would benefit from understanding and identifying WHY they wanted to change; that I could help them with the path to follow, but they had to be intrinsically motivated for their habits to stick and reach their goals.  I have had a lot of pressure to move back and then a lot of pressure to stay… like Thanksgiving dinner being presented daily to a person trying to lose weight!  Seriously, so much pressure.  

Easter 2016. True love and my reasons why.
She may require patience in an entirely different way than he does…. Summer 2016.

We interviewed schools in Oklahoma and Texas two years ago and were terribly disappointed; neither school could give Grey what he needed or at least that is what they told us.   They were only going to provide a fraction of what he had available to him at Stepping Stone (which is a preschool) and would receive in primary school where we live.  I spent so many restless nights stalking websites of schools all over DFW to see a glimpse of what Grey needed and my search was then futile.  I called several of them and affirmed that just like the first two schools, they wouldn’t provide Grey comparable services.  I couldn’t get fully invested in moving before because the primary motivator I needed was not there.    Like a person wanting to lose weight to please someone else, I couldn’t reach a goal that didn’t seem quite right to me.  Grey’s brain was still in a critical developmental stage then and I couldn’t take him away from what was best for him.  Greyson has mild cerebral palsy due to a brain injury that occurred during pregnancy or labor – we don’t know when it happened.  Brain neuroplasticity (think of the ability to rewire the brain) is highest before the age of 5.

Spring 2017. His speech improved tremendously at about this time.
“God is Good.” I have dozens of pictures of my kids standing with decorations here at Our Own Little World. Thank God for this place and the people here who tremendously impacted my children and helped me.

I suppose God had more work to do in our lives and needed more work from me… I believe he did.  Even though I was full of anxiety and desperate for change at that time, I am now so grateful for my unanswered prayers.  I knew there had to be a better option for Grey that allowed my children to actually grow up with their dad than what we had found and I finally found it. 

After much praying, many mistakes, sleepless nights and those bright lights of grace, I am ready to move forward.  I got those rocks off my back, Sheila. It took me six years to do it, but I did it. I can accept love and happiness now. And, again, I have a map for Grey that I can live in peace with.

Baking like big kids in 2017. They love to help in the kitchen.

Bella is not excited about moving.  I’ve promised her I will make sure she can see her friends as much as possible and that she will make new ones. Don’t think our lives haven’t revolved around that boss babe too… Grey and I follow her social and activities calendar.  She’s an active kid.  It hasn’t been fair to my children that they have had to share me so much, though David has always made an enormous effort to be with them every weekend.  I am very much looking forward to seeing Bella shine even more when she gets attention from both of us more. I know Grey will too, but my little girl really, really needs that.

Started as her fan (just look how much different his posture and tone were then). Spring 2016.
Then he became her teammate. Definitely one of my proudest moments. Though he did enjoy snack time more than playing. Spring 2018.
He refused to go to dance class with her, but he was and is very proud of her. Bella’s Dance recital summer 2018.

I know Grey will dearly miss his Victoria, his beloved teacher and one of his best friends.  He told me she has to be his teacher forever and he’s not grown up enough yet to go to kindergarten.  He said he will be ready when he is 8!  (His ability to articulate that shows he is ready.) We will miss the amazingly loving, kind, and enormous village at Stepping Stone. They have promised me they will be by our side to help us wherever we live, another testament to how truly incredible they are and fortunate we have been.  I’ll miss Gayle’s smile and seeing my son being hugged and loved on so very much.  I will miss the ladies from Our Own Little World who have been like an extension of my family and helped me more than they could possibly know.  I will miss having my family close and all the familiar, friendly faces I’ve come to know.   I’ll miss being a part of Arkansas and all its beauty… both the people and places. 

Stepping Stone graduation day! He was so excited.
David and I with Grey at his graduation party. Grey just wanted to eat cake, don’t blame him.

It has been an extremely humbling four years that certainly changed me and forced me to grow (I will always have a lot of that to do). I know it could have been harder and there a lot of folks out there that have challenges a million times more difficult than mine have been.  Perhaps, for me, my challenges were at times mentally exhausting because parenthood turned out so much differently than how I had imagined it would. I have been an aunt since I was nine years old and had 12 nieces and nephews before I had children of my own.  Taking care of kids is my jam.   Being a mama alone has been much harder for me than dealing with even the most daunting tasks of the corporate world I was in.  I couldn’t outwork the lack of emotional support I needed, but that time alone allowed me to not avoid and to heal. I am thankful for all of it; every day, every challenge, every lesson, every blessing.  We have been given so much. 

Moving forward.

Grey reached over 50 goals and is so good at talking now that he has become my dictator and he runs very quickly away from me and can find Skittles no matter how high or hidden they are!  His sense of humor, love, and empathy for others make me so proud too.  I always knew he had more to show and tell us and it makes my heart swell that he now can.   His progress has mesmerized specialists and everyone who knows him well due to the hard work and love of so many.  It is immeasurable in my opinion. 

Hopefully, we can take what we have learned from our experience navigating resources (and life) and do some good in our next seasons.  I will always be grateful for the mercy, grace, and love I have been given despite my failures.  I am not proud of all of the choices I made and I have been far from the perfect parent, but not giving up on what mattered most to me even when it was really hard is something I am very proud of.

Very long story short…. We are moving back to Texas during Christmas break.  This time we will call McKinney, Texas home.  I get to be close to some of my best friends again and a life I built that I have dearly missed. If you know Bella and Grey, please reassure them they will make new friends and be happy in their new home and school (they will be at the same school!).  And, if you have a moment, we would really appreciate a prayer. 

Throughout this time, I have been reminded time and time again to trust God’s plan and allow my faith to be greater than my fear.  Some may think divine intervention or providence is silly and wishful thinking, but I am not one of them.  God has given us what we needed.  Faith, hope, and love have carried us through this season. 

VINYASA + VINO

REGISTER OR MAKE A DONATION HERE: https://www.eventbrite.com/e/camp-grey-vinyasa-vino-tickets-71390239127

Join us to raise awareness and funds for early childhood intervention to support kids with developmental delays and disabilities. This will be a fabulous morning of Vinyasa yoga, wine tasting, and fellowship co hosted by Stay Charmed Yoga! Please feel free to come and go before and after yoga sessions, as needed. We will have a photo booth for fun pic opportunities. This event will be located on beautiful St. Mary’s Mountain, situated among five local wineries. Bring your tribe (and a designated driver) for a fun day in Arkansas Wine Country. The event schedule is below.

8:30-9:00 – Registration (You may register online or at the event.)

9:00-9:10am – Welcome and Introductions

9:10-9:50am – Vinyasa Yoga Session 1

9:50-10:00am – Intermisson // Learn How Early Childhood Intervention Benefits Lives // Light Snacks Provided

10:00-10:30am – Vinyasa Yoga Session 2

10:30-11am – Wine Tasting + Fellowship

ADDITIONAL IMPORTANT INFORMATION:

50% of all funds raised will be given to Stepping Stone School for Exceptional Children in Alma, AR. Learn more about the incredible resources they provide to preschool aged children with developmental delays and disabilities at https://steppingstonearkansas.com/. Additional funds raised will be given to the Cerebral Palsy Foundation. Check out their awesome work and learn more about CP here: https://www.yourcpf.org/. You can also read about Camp Grey’s mission and our story at www.campgreyadventures.com.

Must be 21 years old and up to participate in wine tasting. Must display ID to participate. Eligible participants will get to sample five wines or enjoy two glasses of wine. Each participant will receive a Camp Grey wine glass to take home with them!

Individuals 12 years old and up are welcome to attend.

Please bring a yoga mat, if possible (limited mats will be available).

Camp Grey merch will be available for purchase (cash only).

Participants must sign a fitness waiver at the event.

A Father’s Love

Perhaps instead of Christmas in July, this is Father’s Day in July.  I find myself editing a post I wrote over a year ago that I had forgotten about.  I think now is a great time as any commercial holiday to give a high five and big virtual hug to all of the dads out there who love and sacrifice for their little ones, and especially give a special acknowledgment to Grey’s daddy and the men in my life who have given so much to me and my family.  Excuse me while I depart from early childhood intervention talk and indulge in this.

First up, my dad.  I always knew that if I had a son I would name him John.  John is my dad’s name and since I am the youngest of four girls with no brothers, my mom thought my middle name should honor my dad.  So, Sara Jon I am.  I guess she thought leaving the h out made the name more feminine.  I have never asked her why she did that.  Anywho, being able to pass on my dad’s name to my son meant a great deal to me.  I was sure to leave the h in it this time around.  So, John Greyson my son is.

I grew up a daddy’s girl.  He was my first hero and I loved him more than I could possibly ever put into words.  My parents divorced when I was two years old and my dad took care of me as much as possible until I finally begged and cried enough to be with him legally all the time.

My dad owned a heat and air conditioning company, dabbled in real estate, and built a few houses when I was growing up.  If I wanted to be with him, that meant I had to go to work with him.  The door (as in the truck door) was always open and I usually went along.  Looking back now, especially as a parent, I truly appreciate, admire, and respect my dad for spending that time with me.  I mean, I don’t think I could tolerate my kids hanging with me at work all day…all summer!  (I love my kids, but can I get an amen?!)  He could have told me I was in the way (as I am sure I was).  He could have said it was too hot, too cold, too loud, too boring for me, but he never did.  He took me with him.  I was a prissy little girl obsessed with dresses and dolls who started designing clothes at eight years old and yet my dad and I got along just fine.  He’d get an appliance or air conditioner box for me and tell me it was my house.  I’d decorate it with my drawings and use my imagination for hours.  If that did not entertain me, he would give me a broom and tell me to go to work!  There were no cell phones or iPads in Dad’s work truck then.  Most of the time I stayed out of trouble, except for when I got stuck in a tower on a blueberry farm or ran backwards on a client’s treadmill and burned my legs… and maybe a few other times, but I ended up okay.   I never wanted to disappoint him.

Going to work with my dad taught me lessons that settled into my bones.  It  taught me to work hard, put others’ needs before my own, and get sh!t done without asking anyone for any help (okay, maybe not all of that was for the best).   My dad didn’t just work for a paycheck.  My dad was (and still is) the consummate volunteer.  He was always making another stop to check on someone or do something to make our little town better… from putting up the Christmas lights on the courthouse to doing electric work at the fairgrounds to climbing on whatever roof or in whatever attic to make sure whatever event went off without a hitch.  My dad was THE GUY and he was my favorite one for a very long time.  My dad loved me in the best way he could then.  It wasn’t sweet and soft.  There were barely any words or signs of affection, but he was there and he was mine.

And next, to the man I named my daughter after (the Drew part).  My other “dad”.   It is one thing for a man to love his child; that is something that many do if only out of obligation.  For some, giving unconditional love is not innate, but still, I think many might agree that it is easier to sacrifice for and love a child you were a part of creating or chose from the beginning to bring into your family than one you didn’t plan on even being a part of your life.  It is certainly another thing to take a child in and love them in their darkest hours, through the most challenging versions of themselves when they aren’t yours to have to love.  That’s what Andrew did for me.  Heck, he still does.  He raised me from an insecure teenager to someone who recognizes my many imperfections and tries to see the best in me to do better.  He was there to always catch me when I fell, to move me when I accepted a challenge, to push me to love and do well,  and to celebrate with me when I succeeded.  He made me 40 pounds of brownies filled with love and he always left the light on for me.  Andrew changed my life in more ways than my words could ever do justice and I will always be grateful, honored and humbled that he chose to love me.  I cannot imagine what my life would have been like without him in it, nor do I care to.

And, of course, there’s Grey’s daddy.   I appreciate him for loving me when I made it hard to do so, for believing in me and supporting my dreams, for believing in Grey’s struggles and his potential, for advocating for Grey, for being a leader, for making sure Bella gets the attention she needs when he can, for making us all laugh with his clever humor, for being my best friend… my shoulder to cry on, my ear to vent to, and the person I share our joys with.  This man has sacrificed so much for Greyson to have the resources he needs.  It has been incredibly challenging with so many precious days and nights apart.  Many long drives.  Many experiences of our children growing up missed.  Two mortgages.  I will forever be thankful that he saw how much Greyson could benefit from that sacrifice and made sure that we had all we needed to be safe and secure.  Forever and ever grateful.  I think if you asked this man ten years ago if he would have two more children, he would have made an extremely witty joke that absolutely identified the answer as no.  Here we are and he loves us so.  And we love him always.

Cheers to all of you that play the role of dad.  May you never forget that your role is a very important, impactful one.  There are many gifts you can give – from time, assurance, safety, security, respect, affirmation, love, inspiration, etc.  I hope that someone reminds you just how much those gifts you have given are appreciated and I hope you choose to always remember the good you can do with those gifts and keep giving them freely.

With Love,

Sara

CP Family

One day I will explain to Grey’s sister, Bella, what cerebral palsy is and how it affects her brother. I know she will have a million questions regarding how and why it happened. I hope by the time I need to have the conversation with her, I will have those answers. One day I will enlighten Bella regarding the terms she will need to know to understand, support, and advocate for her brother. I can imagine Bella’s fierce, determined spirit serving Grey and many others, so very well.

However, today and until I think it will make a difference in a positive way, Bella will remain oblivious to her brother being “different” because of his medical history and challenges he faces due to his brain injury. I hope to instead teach her patience, love, and compassion through being his big sister and as he calls her “his best friend” – traits that I hope for her to offer in any relationship.

Bella does not ask why Grey struggles with activities she has been able to do for as long as she can remember. There is no timeline for him to be on in her mind. She celebrates his achievements with me… like when he climbs down from the trampoline by himself, rides his scooter, sings a song, or colors a page, etc. I pray that she understands that we all are indeed different, special, and unique in our own way and how important it is to be respectful and inclusive of others.

Sometimes I feel the need to explain cerebral palsy to her, especially when Grey requires more of my time and patience – time and patience that she sees should be given to her. However, when I stop and honestly think who that explanation is for, then I redirect my energy and focus in another direction (hint – it would be for me).

I think there is a fine line between teaching empathy and putting Grey in a box that does not allow him to grow. Sympathy is not the most helpful emotion to give, after all. Empowerment is far more supportive, in my opinion. I pray for growth for Grey and that others, including Bella, will help him do that as much as possible. Honestly, I am not very concerned about Bella’s reactions to him ever, because….

Love is patient… Love is kind… and even at six years old in her egotistical stage of life, it is clear to see that she loves her little brother, just because he is hers, so very much.

Do any of you have suggestions for how to empower your children to be advocates and inclusive? Do you have recommendations for how to discuss this topic with your children? I would love to hear your feedback.

Sara

March is National Cerebral Palsy Awareness Month

Green Ribbon for Cerebral Palsy Awareness

March is National Cerebral Palsy Awareness Month. I read a lot of articles regarding this topic, looking for impactful ways to spread awareness and create something positive for those affected by CP.

I came across an article that I felt was so incredibly insightful, as to how we can make a difference for those living with CP and their families. I encourage you to click on the link below to learn more:

There IS so much more that can be done, as cerebral palsy only recently became a topic for government funded research. As a mother to a little boy with cerebral palsy, I have so much hope for him. If you are interested in joining forces, please contact me. I would love to hear from you.

Sara

Resources

Hi There!

A post regarding resources seems really overwhelming!  Where do I start?  Should I focus on a certain need?  Will I offend anyone?

Well, I am still not sure if I have the right answers to those questions, but I think it is better to start somewhere than not at all.  Here are a few links to resources that I have found to be helpful or that I think may help others.

We primarily live in the Arkansas River Valley, but for the first two years of Grey’s life we lived in North Texas (an hour from Dallas).  You will see many of the resources listed are specific to the areas we have lived.

I am certain there are more resources than I have listed here.  Please contact me if you have a recommendation or a story to share that may inspire, comfort or help others!

ARKANSAS

Arkansas Medicaid Saves Lives

Bost, Inc.

Arc of the River Valley

Gregory Kistler Center

Sunshine School of NWA

Stepping Stone School for Exceptional Children

Arkansas Medicaid – TEFRA 134(a)- allows Medicaid to be extended to certain disabled children

TEXAS

Early Childhood Intervention Services – Where we started.  ECI connected us to therapy services at home.  Had we stayed in Texas, they would have helped us transition from at home therapy to additional services.

The Ashford Rise School of Dallas – If we still lived in North Texas, this is probably where I would have tried to enroll Grey.

Cook Children’s Pediatric Neurology

Additional Resources

Best Buddies International

Disability Rights Laws

CDC.  Learn the Signs.  Act Early. 

Autism Speaks

Special Olympics

https://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery

 

 

 

Disclaimer:  CAMP GREY is not associated/affiliated with any of these resources.  Engage at your own risk.

A Diagnosis – The Light in Scary Words

It’s not like I wanted my son to have a label that meant he really had a disability.  I didn’t want my son to have any struggles.   I wanted him to be healthy, strong, and independent.  I wanted to read Babycenter with enthusiasm and get excited every week as I watched him meet the recommended milestones I had read about.  I didn’t want to know the names of specialists and I certainly didn’t want a diagnosis for him, until I did.  Until I felt like he really needed one.

Grey’s second pediatric neurologist finally ordered an MRI for him when he was three years old after me asking for answers for two and half years.  (As I have mentioned in other posts, we proactively engaged Grey in early childhood intervention/physical therapy when he was six months old).  The MRI showed Grey had a brain injury on the right side effecting white matter.  I was told that the brain injury was insignificant and that the type of injury he had wasn’t correlated to a particular diagnosis.   Hmmm… pretty sure any brain injury is significant.  To me, it certainly was.  It was the reason why my baby could barely use his hands, talk, and move…. and so on and so on.

MRI Day in 2016

“Calling” his Papa John

The news of the brain injury was sad to hear.  But, I already knew something was wrong and I was relieved to finally have a better understanding of what was going on with my Grey, as bad as that sounds.   What was worse than finding out that Grey had a brain injury was still having a question mark as to what to do to help him.  “Keep doing what you are doing” was all I got.  That didn’t seem like enough to me.  Even more frustrating was when I told Grey’s pediatrician (the one we have to use for insurance purposes) that he had a brain injury and I wanted a referral to a different pediatric neurologist who specializes in working with children with brain injuries, she told me that she felt it was more appropriate to refer him to a geneticist.  Do genetics cause a brain injury?  I reminded her that he already had genetic testing completed at Children’s of Dallas and the results showed no issues.  Terribly, terribly frustrating.

So, I went back to Grey’s Texas pediatrician after finding a pediatric neurologist at Cook Children’s Hospital that I felt would be a good fit for Grey.  Thankfully, the referral was made and accepted.

Grey loved the waiting area at Cook Children’s. He did not want to leave!

On February 13, 2018, my son was assessed by a doctor who took the time to actually observe him do functional activities – like run down the hallway, climb on a chair, step down from a stool, talk, high five, eat, etc.  Dr. Jeffery McGlothlin listened.  For the first time ever, I felt like a specialist didn’t look at my son with “it could be worse… I don’t have time for you… just go home”.  He asked to review Grey’s MRI and then he said “your son has cerebral palsy”.  He told us that it was mild and that considering Grey’s brain injury, he was doing remarkably well.  He told me it was evident that we had gotten Grey help.  He went through treatment options.  He listened.  He waited.  He watched.  And for once, I was speechless.  So many emotions came over me, but I looked at my little boy and thought, “It is going to get better.  We can do more for you now.”  The clinical diagnosis now attached to my boy meant we knew which road to go on, per se, and though it was scary, I found hope and relief in knowing the right direction to turn.  Having a diagnosis not only helps to define more appropriate interventions, but it also helps Grey receive services he truly needs in school and life to reach his maximum potential.  Dr. McGlothlin, assured me that Grey would have access to resources he needs much easier after that day.

Cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination.  Cerebral palsy (CP) is caused by damage to or abnormalities inside the developing brain that disrupt the brain’s ability to control movement and maintain posture and balance, according to the National Institute of Neurological Disorders and Stroke.  The term cerebral refers to the brain; palsy refers to the loss or impairment of motor function.  Cerebral palsy is very complex and can affect individuals differently.  There are several different types of cerebral palsy.  I still have so much to learn about CP.

I cried the most bittersweet tears on diagnosis day.  When I called my husband to tell him about the interaction, it was almost as if we were talking about completing a marathon that I had started to feel was impossible to finish.  I know that might sound very strange, but after asking for my son’s delays to be seriously observed and researching, wondering, worrying, and feeling absolutely frustrated for over four years, I felt immense gratitude when we were finally heard.

For any person reading this who is sharing similar struggles, I encourage you to not give up.  Fight.  Fight.  Fight.  Most caregivers are not doctors and we aren’t equipped to understand the clinical significance, reasons, or whys regarding the struggles our kiddos have, but we do have the opportunity to play one of the most important roles our children will ever need  – advocate.   No one knows a child like their caregivers.  A doctor simply doesn’t have the time to see and observe all we do.  It is our job to speak up, however that may be.

My baby is John Greyson Keese…. Greyson, Grey, Grey Grey, tiny tyrant (ha!), brother, silly goose, buddy – our ornery, precious, adorable boy.  He is not cerebral palsy.  He is affected by it.  He is perfect to me.

With Love,

Sara

Source:  https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Cerebral-Palsy-Hope-Through-Research

Camp Grey Fitness Brunch

We are so excited to announce our first Adventure!

Join us for the Camp Grey Fitness Brunch!  See below for details.

8:15-9:00am – Registration/VIP Access Purchase

9:00-9:40am – Warm-up and High Intensity Interval Training

9:40-10:00am – Yoga and Cool-down

10:00-11:00am – Brunch featuring the Rose’ and Mimosa Bar (sponsored by Post Familie Vineyards and Winery). Must be 21 years and up to consume alcohol.

Cost:

$25.00 – Fitness Brunch: Workout, Brunch (2 drink tickets for those 21 years old and up) and a Camp Grey wine glass

$35.00 – Fitness Brunch + VIP experience featuring Wine Tasting with Post Familie Vineyards and Winery President and Winemaker, Andrew Post. Sample four wines and learn the basics of wine tasting! (Must pay additional $10 at the event, where you will receive your VIP bracelet.)

Please bring sunscreen, ID, and a YOGA MAT.

All proceeds will be given to Stepping Stone School for Exceptional Children in Alma, Arkansas, which provides education, therapy services, care, growth opportunities and so much more to children and adults with developmental delays and disabilities. Camp Grey Adventures is not affiliated with Stepping Stone School for Exceptional Children, nor does Stepping Stone condone or claim liability for any Camp Grey Adventures events.

To purchase event tickets or make a donation, please click on the link below:

https://www.eventbrite.com/e/camp-grey-fitness-brunch-tickets-44848160054

Cheers to Adventures with a Purpose!

Sara

His Name was Grey: Riding the Waves of Mourning

I was sitting alone in a nail salon when a large group of people walked in.  They sat in chairs, one by one, and took up all the seats across from me except one.  They enthusiastically beamed as they shared with the staff how they were all related and were taking time to enjoy a little pampering together.  I watched them, probably a little too much, as I was very intrigued….(yeah, I know that sounds creepy.  I really don’t think I was being a creep, though.  I hope not anyway.  Just a little curious and unusually alone).

They had two small children with them.  A little girl, who was probably just a few months old, and a little boy, who appeared to be about four or five.  The little boy was visibly the most excited about getting a pedicure.  He sat in the Hello Kitty chair that my little girl loves to sit in (okay, yes, she demands to sit in it) and grinned ear to ear when he told the nail attendant he wanted his toes to be painted green for St. Patrick’s day!  He was giggling and loving all the attention his decision was giving him.  He engaged with just about every one there in an innocent, happy childlike way.

He reminded me of my son.  I think it was his eyes.  He had the same twinkle in his brown eyes that I see so often in Grey’s eyes.  He had a sweet, yet ornery demeanor, very much like my Grey too.

I sat there for about 30 minutes vacillating between exchanging glances with my fellow customers, watching Fixer Upper on the television above me, trying to ignore the conversation in another language that was going on loudly at my feet, and just closing my eyes to enjoy my own pampering.  However, I couldn’t help but continue to observe the little, happy boy with green toes.  And, then all of a sudden, without any warning, I started to cry.

An overwhelming sense of sadness came over me, as I began to think about how my little boy struggles to have the types of conversations and interactions that the boy with the green toes was having.  I started to let the “what ifs” and “whys” flow in to my mind and found it very hard to shut those thoughts out.  What if my little boy didn’t have one little part of his brain injured?  Why does white matter have to matter so much?  It is so small and yet it has such a big impact.  Why did this happen to him?  Why can’t I see my son have a life without the struggle of a brain injury?  Why can’t I see my son ask for green toes and revel in the glow of healthy bliss while skipping and dancing around?  What would my little boy be like without the injury that we still have no real explanation for?

And then I did what I have allowed myself to do only a few times before.  I imagined a healthy Grey.  No delays.  No struggles to communicate or move or understand.  I quickly shut those thoughts off, for they are too hard to bear and, I know, I know, they are not fair or helpful.

Mourning the loss of the son I had imagined- the baby, the boy and the man I dreamed of during those nine months of carrying Grey – comes and goes in waves.  Most of the time, I have nothing but amazement and gratitude for the child I have been given.  He teaches me, humbles me, and makes life absolutely more wonderful every single day.  I watch him overcome challenges and am amazed by his accomplishments.  I look at life so much differently, so much better, than I did four years ago, because of him.  He fills my soul with joy and love and inspires me to be stronger than I ever imagined I could be.  He helps me cut out petty, unimportant issues and focus more on what matters most to me.  However, there are days, like yesterday, when I mourn the life I wanted for him, and quite frankly, for me to be a part of, as well.  I feel angry and sad and guilty and hurt for him and for me.  It is not fair that something happened to my beautiful, innocent boy that made life more challenging for him.  At that moment, I felt robbed and as if someone had taken away so much from us.

One of the only other times, I expressed this mourning, I was with a group of cohorts in graduate school.  We were learning about group counseling.   We were asked to share anything that we wanted to discuss.  Grey was about a year and a half at the time and I was struggling with not having more answers to the questions I had regarding his delays.  He had been working with his physical therapist for about a year and was still not walking or talking.  We did not know he had a brain injury at that time.  I think I avoided most of my feelings about Grey’s delays for a very long time.  And when I did feel sad, I felt guilty for being sad.  When it was my turn to share I informed my classmates that my son had developmental delays, but that I didn’t know why or what to expect and that I felt very selfish for envisioning a life for him, that I wanted for him and for me, that he may never be able to have. I wanted to cheer him on and watch him play soccer as a little boy, play baseball with his friends in high school, go to college, have a successful career fulfilling a calling in his life, and watch him marry the love of his life and be a father, among many other happy events.   I wanted to cherish, love, and be engaged in every moment with gratitude in each of them.  I was sure I was going to be judged.  I felt awful for feeling not having those types of moments would be sad.  One of my classmates, a male, said he felt that me wanting those things for my son was not selfish, but that they  showed I loved him.  Other loving, precious comments flowed in.  I have always held on to my classmates responses, as they mean so much to me.  Don’t be afraid to share kindness… you never know how much it may mean to someone.

I have so much to cherish, it’s just that what I am cherishing is a bit different than what I originally imagined. I know I don’t have a choice in whether or not my son does or does not have a brain injury.  We have this one life and these cards.  These precious, beautiful cards and I have a million choices to make.  So, I choose to make choices that give my Grey the best life he can have.  I choose to surround him with people who understand his needs and love him.  I choose to help him grow and learn to the best of our abilities.  I choose to not discount him and always believe in his potential.  I love when he tells me what he wants to be when he grows up… and I believe in his ability to do what he tells me he wants to do.  I choose him always.

I took my perfectly manicured feet home and told my husband about the experience.  And then I told him through my tears…. “his name was Grey.  As they were leaving, the family said to the little boy with green toes, “time to go, Grey”.  His name was Grey.”

There is a quote by Kiersten White that I love and makes me think of my Grey.  “I’d choose you.  In a hundred lifetimes.  In a hundred worlds.  In any version of reality, I’d find you and I’d choose you.”  Yes, I would absolutely, wholeheartedly choose my baby.  I think just about every parent feels this way.  Being able to carry my children and bring them into the world to love, teach and care for is the greatest gift of my life.  However, on that particular day I wanted him to experience life a bit differently.   I have incredible peace and gratitude for being given my son exactly the way he is.

With Love,

Sara

Stepping Stone School for Exceptional Children: A Model for Success, A Miracle for Our Family

I am very excited to write about our experience with Stepping Stone School for Exceptional Children, or Stepping Stone, as we call it.  I realize “miracle” is a strong word, but Stepping Stone has helped our Grey reach milestones that two years ago seemed so far away.  After spending days upon days researching for the best possible solutions for Grey in three states and after seeing the incredible progress my child has made while going to school at Stepping Stone, I am extremely grateful and amazed by this school.  Stepping Stone School delivers care and instruction to children who have developmental disabilities, preparing those children to be successful once they enter traditional K-12 learning environments. The 54,000 s.f. facility provides a safe, secure, and stimulating setting for students, and state-of-the-art spaces for teachers and staff, per C.R. Crawford Construction, who built Stepping Stone.  To learn more about Stepping Stone and the many services it provides and the people whose lives it impacts, please click here.

OUR STORY

I will start with our story and what led us to this life changing place.  I grew up in Ozark, Arkansas, about 20 minutes east of Alma, Arkansas where Stepping Stone is located.  I moved to the Texoma area in 2007 for my dream job.  That’s where my family and I were living when another incredible job opportunity was proposed to me in 2015.   I was working full-time and in graduate school and feeling like I had chosen the wrong growth path.  I was not in a good place.  I was very ready for a change.  The problem was this would be a huge change, as the job opportunity was located in Fort Smith, Arkansas, just a few miles from Alma and three hours from where our home in Texas is.  Out of curiosity and a strong internal push, I told my sister about the job option and she then informed me of Stepping Stone.  I never knew Stepping Stone existed before that conversation.  Once my husband and I toured Stepping Stone and learned about the opportunities Grey would have to learn and grow there, we knew a move was in our future.  I believe that all of this was not happenstance, but divine intervention.  We left our meeting with Stepping Stone feeling incredibly grateful and full of hope.  Lots of happy, overwhelmed tears were shed.  There was no turning back.

Grey went from receiving services at home to receiving a holistic, individual education and therapy plan.  He started going to Stepping Stone in January 2015.  He was 28 months old.  Unlike most two year old children, he could not run, jump, climb, say more than a handful of words (and never consistently), or show affection through using movement (i.e. hugs and kisses).  He didn’t play with other children, not even his sister.  He struggled feeding himself, as his hands were almost always clenched.  At that time, we didn’t have any idea why he was experiencing these delays because our doctors kept telling us not to worry so much.  By this time we had already had Grey evaluated by two different neurologists, an endocrinologist, and a geneticist.  We kind of felt like we were playing a game of what seemed similar to musical chairs for a diagnosis.

Fast forward to today and our Grey can run, climb up and down stairs, talk in sentences (though we still don’t always understand him), give the best hugs and kisses, show empathy, feed himself and is getting closer to being able to dress himself.  Grey is a hundred times more independent than he was two years ago.    I attribute Grey reaching all of those milestones to the services he received from Early Childhood Intervention and Stepping Stone and to David and I being determined to be Greyson’s advocates.

There is a lot of work that goes on at home too.  I know that may sound like a really silly thing to say, as it is so obvious and I am sure that those of you who have kids with special needs are shaking your heads or saying “oh, yes!”.  The struggle is real…We have worked with a wonderful group of specialists from ECI and Stepping Stone who have taught us things we can do at home to empower Grey to be more independent and retrain his brain.   I am always grateful for little reminders from those folks to do what I can to help Grey at home too.

A COMPREHENSIVE SOLUTION 

Stepping Stone is a well-organized and incredibly structured, miraculous beacon of hope.  I mean, look at the preschool building (Stepping Stone provides services to individuals beyond preschool, as well).  It’s stunning on the outside, but the magic is of course on the inside.     There is a special room for PT services, with all kinds of interactive tools and devices.  The playground has special flooring and equipment that makes it possible for kids with various disabilities to play safely and have fun.  There is a safe, secure drop off area.  Each classroom has space for play, eating, and learning.   There is a large onsite cafeteria where healthy meals are prepared onsite for the children to have breakfast and lunch at the school.  The school hosts special programs throughout the year to give students an opportunity to shine.

The leadership and mission as Stepping Stone lends itself to an incredible environment for the students.  Every morning Grey is greeted by several individuals and often with kisses and hugs. Mrs. Gail, the gatekeeper, always greets us with a warm hello and she somehow seems to know every child’s name.   There are usually two to three aids and one teacher in every classroom.  Grey has two aids, one teacher and 10 children in his room.  I think he had about 16 children in his class last year.  I feel that each day I leave Grey at Stepping Stone, he’s in the best place that he could possibly be to learn and grow.  I know he will get the services he needs with love and compassion.

Having every service Grey needs available to him under one roof makes it possible for me to still work and help provide for my family.  When we were living in Texas, in order for Grey to receive therapy services, I left work for two to three hours at a time on several days a week to take him to therapy services at our home.  I had a phenomenal boss and employer who let me make up my work after standard business hours.   The most frustrating part of the situation was that even after all the hustle and bustle, Grey still wasn’t getting everything he needed because his daycare was not designed to cater to children with special needs.  Nothing in that area was or is available to give Grey what he really needed.

Besides offering education and one-on-one therapy services onsite under one roof, which is extremely rare, Stepping Stone is also different in how it is primarily funded.

MEDICAID AND TEFRA – WHAT AND WHY

Stepping Stone is funded mostly through funds from TEFRA 134(a), which is a Medicaid plan option, private donation and the United Way.  TEFRA 134(a) is a look-alike TEFRA option.  Eligibility to receive Medicaid via TEFRA 134(a) is solely determined by the child’s need and cost is determined by the parent’s or caregiver’s income.  To read more about TEFRA click here.  To read more about TEFRA in Arkansas click here.  This type of funding makes getting the right care possible for many disabled children whose families would not be able to afford it otherwise, while also allowing disabled children to live at home rather than in an institution.

From my experience, qualifying for Medicaid in Arkansas via the TEFRA waiver is no simple task.  Caregivers will need to complete dozens upon dozens of pages of paperwork each year, make sure appropriate assessments are done to verify eligibility, and work with their healthcare providers and special needs partners to ensure every box is checked, as needed.  While the paperwork piece is cumbersome, I understand why it is a necessity.  It helps to ensure that funds are not being wasted and that only children who really need services are getting help.  Hopefully, this will help to make funding sustainable over time.  I know many individuals do get denied and are not granted Medicaid via the TEFRA act waiver and I can only image how frustrating and terribly disheartening that must be.

If you live in Arkansas and have questions regarding Medicaid, TEFRA, or where to go to get more information and help regarding eligibility for services, please don’t hesitate to reach out to me.

Texas does not provide the TEFRA option and Oklahoma does.  I have not found a single school in Texas that provides a setting that is as comprehensive and individualized as Stepping Stone.  The RISE school of Dallas is the most similar option I have found in Texas, but PT, OT, and ST are offered in a group setting rather than individually and all students must pay monthly tuition which exceeds $1000 currently.   In Oklahoma, the only school similar to Stepping Stone that I found is Special Care, Inc.  It is in Oklahoma City and provides onsite therapy services, specialized care, and early childhood education.  It sounds Ah-mazing.  Learn more about Special Care here.  It appears to be primarily funded through donations and United Way.  Both Special Care and the RISE school serve individuals with and without disabilities.  Stepping Stone only serves individuals with developmental delays and/or disabilities.

MORE COMPREHENSIVE SOLUTIONS LIKE STEPPING STONE ARE NEEDED IN OTHER AREAS

There are many schools in Texas who serve children with special needs, most of which serve children with learning disabilities.  In Texas, it seems that the solution for providing services during one of the most critical periods for growth and development in a child’s life, birth to five years, is their Early Childhood Intervention (ECI) program.  ECI isn’t enough in my opinion.  It provides only a piece of the solution.

It is hard to say how Grey would have progressed had we not taken the leap of faith two years ago and enrolled him in Stepping Stone.  I know how fortunate we are to be able to have jobs that made it possible for us to give our children the opportunities we have and bosses who supported us to support our family.  The only reason that warrants thinking about where Grey would be had we not enrolled in Stepping Stone is to think about the hundreds of other children whose parents either have no idea how critical and life-changing early childhood intervention can be or do not have resources available near them to help their child, which is very sad to me.

I strongly feel that there should be more schools like Stepping Stone available to children who desperately need them.  One of the similarities between all of the phenomenal schools I have read about, including Stepping Stone, is that they were brought to fruition due to the strong will and passion of one or two people who recognized an unmet need.  God keeps telling me to explore this option for Texoma, but right now, I am focusing on my Grey and making sure he has what he needs to reach his maximum potential.  However, if you are reading this and feel called to bring a school like Stepping Stone to Texoma, please reach out.

And, if you are looking for a wonderful option for donating to – an option that changes lives – please consider making a donation to Stepping Stone or an organization in your community who provides early childhood interventions for kids with disabilities.

One last thing to mention in this very long post, much thank you to Toni Wilson, for being the person who was instrumental in bringing Stepping Stone to life in 1972 and still leads it today .  The impact her life has made is immeasurable.

With Love,

Sara

Picture Source:  www.crcrawfordconstruction.com