It's all about the Canaries

I read this great story about the coal miners in Pennsylvania from one of my favorite writers, Glennon Doyle Melton. As we all know, the mines are very dangerous because they are full of invisible deadly toxins. The Miner’s bodies weren’t sensitive enough to register the levels of poison so they often brought a Canary down with them. The Canaries body is specifically built to be very sensitive to the toxins in the mine so when the toxin level rose too high, the Canary stopped singing. If the Miner’s didn’t leave when the singing stopped, the Canary would die and shortly thereafter, so would the Miner’s. The Canary became the Miner’s lifeline.

I believe many of our kids are Canaries.

When a child has sensory integration issues due to a disability such as Autistic spectrum disorder, Seizure Disorder, Bipolar, Depression, Hearing Impairment, ADHD (which is just one huge sensory challenge), etc. the world can be very painful and overwhelming. Everything from sounds, lights, energy, and speech coming at them can be very difficult to sort though. Some kids are more efficient at adapting so on the outside they may follow the rules better, however sometimes there is still a constant underlying uncomfortableness they can’t put into words.

I don’t believe this makes them weak. I don’t believe it makes them so broken they need to be fixed. In fact, it’s possible they are the bravest of us all. It seems no matter how painful it feels, they just keep putting themselves out there over and over in the course of their everyday life. And what we all perceive as inappropriate behaviors could quite possibly be that canary losing its song and trying to let others know there is trouble. I guess the question is, are we listening? Or are we consumed with the fixing?

When you have a plant or a flower that isn’t growing, do we keep forcing it while we watch it continue to die a little death over and over hoping it will eventually adapt? Or do we change the environment so it can take root and flourish?

We as parents all want our children to be able to fit in and function in our community because we believe that will make them happy. We all want our children to feel loved and accepted. And I do believe we do need to help them learn to adapt to a certain extent so their attempts aren’t so painful. And when they finally uncover their passions, the path is open. However, if we are extreme and solely focused on making them acceptable, we may miss the gifts they are here to give us.

As both a parent and a canary, I struggle with this balance every single day.

Perhaps One Shared Root will be that special place where Canaries are safe to sing, a place where others are encouraged to listen. Who knows… it may just be the lifeline we didn’t even know we needed. 

Let Love Bloom

Last week was a painful time for our DMD community. Over five days, we lost five beautiful young men ending it with the loss one of our most well-known warriors, Darius.  For those of us parents who grapple with anticipatory grief on a regular basis, the search for our own answers or at least a believable spin becomes paramount for our survival. Or at least for mine.

After spending some time being still, this is what I heard…. perhaps the purpose of the great loves of our life are not so we will have them forever but simply so we will continue to grow from them. In looking for our farm for the lessons, I see annual plants which are so abundant when they impact the garden so richly, we wonder why they aren't meant to last. Unlike the perineal, they are only here for a too short season of our life. But when they do die off, they go back into the soil and create a richer more bountiful source for the next love to bloom. Maybe that’s love too.  Maybe love isn’t meant to stay the same, maybe it’s meant to elevate us, change us and make us richer for the next time.

I have certainly had some meaningful loss: my mother, my aunt, and several close friends. And with each heartbreaking loss, the love remained and made me able to love more deeply. I have no way to even begin to comprehend the loss of a child although I think of it often. All I can do is hope the love which has been so carefully cultivated, like the richest of soil, becomes so fertile the most precious of blooms are able to grow in its place. Hope doesn't promise, but maybe it's the fertilizer needed to attract the light. And we have to ask, why live in the dark when there’s an option of light? If we aren't planted in a space the light can reach, we extinguish all possibility for the perineal right below the surface, just waiting for permission to bloom once again.

Making Room for the Gifts

Thanks everyone for voting on the logo! Here is the final version we settled on. Thanks so much again to Jen Mileti at Vilocity! 

 After several meetings and no cooperation and avoidance from SUSD, we have moved on from the location we had our sights set on. Everything with this project has been this magical carpet ride with each opportunity presenting itself as we start to look for it. The Scottsdale Unified location was starting to feel like paddling upstream so we took it as a sign that it’s not meant to be. I could have done my usual advocating up the chain of command (I only had one rung to go), but I want this to be different. So many times in the past I made things happen rather than allowing them to happen. And I’ve begun to learn that the latter approach seems to have far more sustainability.

As soon as we let that go, some other options have presented themselves. We are investigating those leads and are confident we will find our home, one we are welcomed in with open arms.

I called in the troops Saturday. We still want to throw this modest fundraiser to get started with a small group of potential board members, partners and folks who have really shown interest. Our last window to have it before the holiday madness kicks in is November, which is coming fast. I was feeling very overwhelmed so I called some of my nearest, dearest lady bosses to come over and help. Once again, magic. That day we received an anonymous donation of $2500 to underwrite the event! 

That just blew us away. Speechless. Really.

We also got word that the fantastic caterer from Gertrude’s at Desert Botanical Gardens, who finds our project heartwarming, is donating her services and lovely faire. We are going to still have to scramble to host a warm farm to table dinner to launch our video & crowdfunding campaign but it will be so interesting to see the final result. 

Also, this week I’ll be cleaning up the final draft of a letter of intent for another big grant ($130K) due Friday. It’s been such a privilege to work on this project. I’m learning so much. And even though I’m donating all my time in the midst of 2 other jobs and kids, I still feel calm about how it’s coming together. Much like the experience in the Grand Canyon, this seems to be happening through me rather than because of me. I put in the hard work hard, do my best, but comfortably let go of the outcome. The results seem to have their own life.

When these ideas come clear, evidence is all around perhaps this a much more graceful way to navigate through the rest of my world as well….getting out of my own way. Making some room for the miracles and gifts. 

Unreasonable

I just finished writing our first big grant and got asked by the grantor to define what makes us unreasonable at #OneSharedRoot based on the quote below:

"The reasonable person adapts themselves to the world; the unreasonable one persists in trying to adapt the world to themselves. Therefore all progress depends on the unreasonable person." -George Bernard Shaw

Here was my answer:

One Shared Root is unreasonable because we look past what others consider reality and design our world with unlimited potential. This community venture began with our son, who in spite of a life limiting disorder, approaches each day as if his spirit will live forever. He continues to inspire us all to challenge limitations and bravely pursue liberation.

We also just got our logo choices presented by our dear talented friends at Velocity. They are all amazing!!! Go to this link if you want to vote on them. We are interested in your opinion.

https://pollev.com/multiple_choice_polls/G5UDN7YjqD1LaMc/web

Lastly, our dear friend Melissa Pullon introduced us to this amazing gal who works with another Non Profit named FT4C, Fruit Trees for Community. It’s a program to strengthen the local community with the benefits of a bulk-order wholesale discount on a great assortment of berry, grape, and fruit trees that were hand-picked to do well in our climate. With every order over 3 trees, they will donate 1 fruit tree and every order over 12, they will donate 5 fruit trees in your name to any of the local participating organization you choose (#OneSharedRoot)! Check out their website: https://ft4c.org

The root just keeps growing….

Up Next.....

Lots going on…

·         Currently writing two grants to the tune of $100K

o   Perhaps a long shot but doing it for the practice as well as the miracle

·         Meeting with SUSD on the location

·         Researching smaller project based grants to pursue

·         Creating a video for our crowdfunding campaign kick off

o   Thanks to our huge hearted friends at WIREBUZZ

·         Planning a small fundraiser/ board recruitment dinner (NOV)

o   Introducing the idea to our closet members of our community who are interested enough to help support the start up  

o   Need Volunteers and donations for the dinner

·         Reserving space for our summer camps

·         Organizing resources

·         Taking the DDD class to become a provider

·         Creating our branding and marketing pieces

o   Thanks to our creatively gifted friends at VILOCITY INTERACTIVE

·         Gathering lists of potential candidates

·         Creating the program curriculum

Anyone who wants to help with the fundraising dinner, please let me know!

We have over 2,500 hits on this blog and so many people who have expressed a need to be involved. That's how we know we have to keep on keeping on, one day at a time. 

Unexpected Catalyst!

When we decided to go for it, we reached out to our dear friend Alisa Chatinsky from NPO Success. She is an amazing woman who helped get Daring Adventures to a new level. I knew from all our work with Anthony’s Adventure and her personal love for our family’s story she would really appreciate what we were trying to do.

Alisa in turn introduced us to some folks over at Vitalyst health Foundation (formerly St. Luke’s Health initiative). Upon her direction, we went to them and told our story and shared our vision.

Those of you who know the process, starting a non-profit can be very time consuming. You have to file your incorporation papers, file for tax exempt status, draw up your articles and bylaws, and organize a board of directors. This process can take 8 months to a year and then two years or more before you are eligible to apply for any grants. One solution to expedite things is to find a fiscal sponsorship.

Fiscal Sponsorships are 501© (3) charitable corporations who give unincorporated organizations starting out (who have similar missions), a place to park while they are building capacity. The sponsor provides accounting, human resources, grant reviews, and other very important services behind the scenes. They give a new organization some credibility and fulfill requirements certain grants demand.

TAP/AZ (Technical Assistance Partnership of Arizona), an affiliate of Vitalyst, offered applications for a fiscal sponsorship and we decided to apply. This would allow us to get started now with some significant backing. Not just fiduciary oversight, but also a large prestigious organization saying our idea had merit.

Filling out the application was a little daunting and took days. Alisa reviewed it for us and helped us fine tune our mission, plan and budget. We were introduced to a very kind man named George from TAP/AZ   who guided us and helped clarify what the organization was looking for in its candidates.  We submitted the application and waited with our fingers crossed.

We are overwhelmed with joy and gratitude as we tell you, today we have signed the legal agreement with TAP/AZ as our official fiscal sponsor!!! We can now accept donations, apply for grants, and have the leadership, experience and support we need to do this NOW!

DeeDee and I went to lunch and sat and stared at each other with tears in our eyes. This is happening. It feels so divinely inspired. All my early years of the journey with AC felt like I was paddling up Niagara Falls. Everything was so hard. Getting him services, getting him healthcare, delivering interventions, getting friends, keeping friends, working, relationships, discipline, perseverance.…. But over the last couple years, I’ve started to slow down. Some of it I’m certain is simply sheer exhaustion but much of it feels more like a “letting go” of some sorts. At first it felt awkward and uncomfortable. I wondered if I was giving up the fight.

Over time, I slowly shifted my philosophy from “making it” happen, to “allowing it” to happen.  Instead of fighting for what we needed all the time it became more about collaboration, support and asking for help. I can’t help but feel everything is unfolding, opening up and standing to reason. When I look at all the dots effortlessly being connected with #OneSharedRoot, I can’t help but wonder how amazing and limitless the potential seems….. Now that something so much bigger (and wiser) seems to be running the show.

I can’t wait to see what happens.

Location, Location, Location

This will be key to the success.

We will need: space to farm in the ground, raised beds for people in wheelchairs, space for green houses or sea containers of Aquaponics, office/classroom space, Farmer’s Market and Juice bar area for the public and parking. We will need to be somewhere we can connect to other programs we want to partner with including the school district, community traffic for branding and awareness and accessibility for the marketplace. A place that has space for opportunity and growth.

Having started a business, I know first-hand, this vital decision can make or break it. And based on past mistakes, we want to go into this with the least amount of fiscal responsibility possible.

Today, DeeDee and I found a place with all of the above criteria.

Yes, we found a home for #OneSharedRoot.

It’s perfect but will require some politicking. I’ll share more details soon. The decision makers will be the governing board of Scottsdale Unified School District.

Our next step is to start drawing up the plans to present to the board as to how we will utilize the space we are requesting. We are reaching out to an engineering program at ASU and a master gardening program at U of A for help and we will soon reach out to all of you for community support and recommendation.

Stay Tuned…..it just got real.

Brushing up on Skills

Every year Arizona Department of Education has a state wide Transition conference. They have presenters with over 100 break- out sessions on all kinds of topics for parents, students and teachers addressing the needs of youth and young adults with disabilities. Having worked at ADE for many years, I knew they offered scholarships for parents. I requested one and luckily got a wonderful email from my dear former supervisor saying it had been granted. So blessed!

For the last few days, I have been listening to experts speak on topics near and dear to this project and to my heart. And as if the stars were lining up specifically for us, the first keynote was focused on At Risk Youth and how what they really needed to be successful was mentorship, relationships with positive adults who saw them as all they could be and possibly some “invention” rather than the usual “intervention”. This speaker unknowingly read the programming plan we have been creating. His name was Roberto Rivera and he started the week off totally lighting my fire.

One of my favorite parts was his advice for us grown ups to start being “elders” instead of “old people”. Many of us, as we get older and are working with our youth of today, want to just tell our kids what they need to do based on our past and how it’s always been done. But we don’t listen to them.  We offer solutions not being aware the problems have changed. We don't encourage them to find their own solutions and create change. He went on to present research which has found kids need three things to be successful: Positive relationships with adults other than parents, to find the thing that lights their spark, and to have a voice and be heard. He reminded us the word EDUCATE comes from a Latin root that mean “to bring out what’s already there”. He compared educators and parents to Michael Angelo and reminded us all when we look at the stone, we need to see the sculpture within waiting to emerge. He talked about the three tracks a youth could choose from: destruction, distraction or the track to the dream. Those who pursue a pleasure centered life are headed for destruction, and those who are self-focused may achieve many goals and seem happy on the outside, but deep down have no purpose.  Ultimately, we need to inspire more of our youth to jump on that dream track to a meaningful life of significance, purpose and fulfillment. It starts by helping others and connecting them to their community so those powerful dreams and voices can be heard and affect change. This powerful presentation validated our model for #OneSharedRoot and confirmed what we are really launching is an enterprise for social change.

I attended many sessions on methodology for teaching social and job skills, updates in transition laws, and how to navigate underutilized systems and resources already in place. There were so many amazing speakers and booths at the exhibit hall sharing information on connecting students with future employers, activating family engagement and giving our youth hope.  

I reconnected with so many colleagues in the various fields who want to support our endeavor and was introduced to a variety of resources to help fund our project. I’m overwhelmed with gratitude but also curiosity how the perfect opportunity presented itself at the perfect time. Once again confirming we are right where we are supposed to be. This is the first time in a long time where I am not swimming upstream to make something happen. It's simply unfolding.

Collaborative Beginnings

Unlike past experiences where I (egotistically) felt I had to do things all myself or they wouldn’t get done, I knew this was different. We are going to need lots of help and we are going to have to make this the community's project otherwise it will never sustain itself. I have enough experience to know now that my energy and fortitude has an ebb and a flow and there are times where I’m not sure which one I’m in the midst of. Just like I couldn’t carry Anthony alone.  I can’t carry this alone. I learned through the canyon experience as well as spending the last few years working with DeeDee to build a unique family dynamic, the real magic happens with collaboration.

For those of you who don’t already know, DeeDee is my wasband’s (Chris Castle) beautiful wife. We, as a modern family all work together. Chris, DeeDee, my boyfriend Doug, and the mother of his daughter, Liz are all partners. We all share parenting responsibilities. We spend holidays, family dinners, and events together. We all contribute our strengths and rely on each other for areas we struggle in. This may sound strange or even impossible to some, however we have all agreed it’s our best option. It was a choice we all consciously made. We chose (and continue to choose) to try to overcome petty differences so we can raise strong, collaborative, loving kids who have adults who set a great example of those lessons. It didn’t just happen and it takes work, honest communication and trust. It’s not always easy, but it’s always worth it.

And Like our family model, we see this project something amazing to share and build together for all our kids. 

With the concept of #ONESHAREDROOT in mind, Deedee and I started researching and meeting with everyone we could  think of. If we haven’t called you yet, hang on, I’m almost willing to bet you are on the list. We researched all the places in the country with similar models (there is nothing exactly like it). We spoke and traveled to many of the places over the spring and summer and asked lots of lots of questions. We gathered pieces many of the other models were missing to build a plan that attempts to fill all the gaps.  All we have gotten is support and encouragement.  And literally every person we have spoken with, has said this project is crucial, possible and they want to help.

In fact, this is starting to come together as if the plan was already written somewhere long ago and we are now just playing it out.

The Day it All Came Together

After listening to the problems and ideas I had to solve them, DeeDee (Muma 2) said she had somewhere to take me. As I told her about my transition/social skill program, I kept saying something was missing. I didn’t want to create another program that ended up looking like babysitting. I wanted all our kids to do something meaningful. I wanted the kids to create reciprocity with the community in a way which would make them experience feeling valued, needed and embraced for who they are. I wanted the end product to be something that would change the community so they needed us as much as we needed them. I had no idea what that would be.

When the community showed up to carry Anthony, I thought they were there for him. And I think at first, everyone was. But very quickly it became so much bigger. SO much bigger. The people who were helping felt great and got so much out of it for themselves. We watched hearts and minds open. Everyone felt important and was contributing to something really amazing.  Everyone was a part of the creation and the end result. That’s what I’m talking about. All our kids need that. And, I believe, our community needs it too.

DeeDee took me to Singh farms. This beautiful magical little place off the 101 and Thomas. We wandered around in awe searching for words about how perfect this warm glowing little spot was.

We saw fresh vegetables, a market with amazing little goodies, a hip yummy juice bar, happy relaxed people interacting and very proud chickens wandering all around. This was it. This was the context we were going to create our program in.

The variety of ways in which our kids could be involved and their strengths could be used were limitless! Farming, the science and technology of aquaponics, organizing, engineering, building, sales, making juices and food items, marketing, designing baskets, taking produce to restaurants, caring for animals… the list goes on.

DeeDee and I spent hours walking and tossing around all the possibilities; they were endless. I think it was official that day.

WE WERE GOING TO DO THIS.

 #ONESHAREDROOT

Out of the Problem and Into the Solution

For AC, heading into sophomore year, I was feeling anxious about the IEP transition goals. For those of you who aren’t familiar with the process, when you are a student in special education has an IEP (Individualized Educational Program), the schools begin a transition plan when the student is 16 (more ideally at 14). They start assessments to find strengths and interests. This is a paradigm shift since most of the child’s school years were spent trying to “fix” them. Now the focus is supposed to shift over to what they excel in so we can fine tune it and turn the skills into future opportunities. Next, the IEP team is supposed to create (a minimum) of two post-secondary goals based on those strengths and interests and then tie them to courses of study and community activities in which they can practice those goals.

Nationally (let alone AZ), this is by far the weakest part of the special education process. If you aren’t college bound and aren’t entirely ready for a job, there isn’t a whole lot out there to support these kids. There are some resources like vocational rehabilitation and some other sporadic agencies, however if Mom and Dad aren’t experts at finding Waldo, forget it.

Another thing I realized, even if there are programs, they aren’t inclusive of everyone. I started asking “why is this process just for special needs kids when there are so many others that would benefit? Our “slipping through the cracks kids” not only need support, but they are the ones who lack the most resources. And our "typical" kids need to learn how to share their gifts.

SO that’s the problem. And I’m not the only one in it. There are lots and lots of parents feeling the same fears and swimming in the same murky pond. I have decided it’s time to get out of the problem and into the solution. And if there isn’t one, we need to create it! These days I'm feeling courageous and up to the task, mostly due to that #ONESHAREDROOT thing I mentioned in the first post. I understand now, since the problem isn’t just mine, neither is the solution.

When we ran social skills groups and summer camps, we would train those at-risk kiddos to be the mentors and teach our special needs kiddos and saw some beautiful things transpire. One thing we all know to be true, it’s hard to misbehave or get into trouble when you are busy helping others. Furthermore, depression, ADD and many other behavioral health issues are often due to (or exasperated by) self-centeredness and the inability to get out of one’s own reality (that’s actually a brain development thing, not just my observations). However, if one can retrain one's brain to focus on things other than one’s own thoughts and feelings, it generally helps alleviate some of the symptoms. And let’s face it, who better to try and help than those who have it even tougher than you. Puts things into perspective pretty quickly, right? This also gives those special needs kiddos who are always on the end of receiving help, an opportunity to give back and find purpose as well. Win-Win.

So here comes the idea…… create a transitional support program for the high school kids after school and in the summer to help everyone gain vital skills, use strengths to help others and secure a meaningful future of purposefulness and connection.

Stay tuned dear friends! More will be revealed....

Clarity

It’s been two years since the Grand Canyon Adventure and I’m still absolutely moved to tears when I think of how many folks, from how many places, came together over one young man’s simple wish. As many of us witnessed, that one wish with it’s a huge butterfly effect, rippled through our whole community leaving an indelible print on so many.

Over the last year, there have been many tough adjustments. AC stopped being able to roll over at night making sleep scarce and sacred for those of us who turn him, Pneumonia came and went with far more serious implications, and our family struggled to adjust to our new normal in regards to his level of care. And Anthony through it all? He continued to flash his huge grin, boss us around, and constantly think of new adventures.

Having four of our kids now in High School, the conversations in our home frequently center on the future. As any DMD parent knows, this topic brings waves of strong emotions no parent wants to have to ride. But in his usual spirit, AC is only briefly sad or fearful. He quickly jumps in and starts asking tough questions with complete abandon for the complexity of the answer. What’s next, Mom? I get to graduate with my friends, right? Where’s my job going to be? What am I going to do that's fun? And (my favorite) how can I get away from Mom?

Trying to prepare our kids to be independent, purposeful and happy is every parents challenge. However, when you have a kiddo with special needs, depending which day you ask, can seem nearly impossible or at the very best, completely overwhelming.

After going another round with the grief cycle, I emerged from the fog with some clarity. I remembered the canyon and the community we built. I remembered how in sharing the load, it become so effortless to carry. I thought of all of the other parents, afraid for their children’s future. Then immediately thought of all the beautiful people who not only want to, but need to help others for their own growth and sanity. I was reminded of the Aspen trees in Colorado. And how thousands and thousands of living breathing trees all share one root, not far below the surface.

We, as a community, like those trees, have ONE SHARED ROOT.

And it was upon that realization, Anthony’s questions suddenly didn’t seem so hard to answer.