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.