This is my husband sharing a little about our journey and being parents of a son on the autism spectrum. In addition to being an amazing human, he’s also an incredibly talented magician. Since April is Autism Awareness Month, I wanted to share.
Sometimes the stars do align, if only for a moment. We meet people we’re meant to meet at a time when we need it most. While I’m leery of putting things out to the universe sometimes for fear of them being slapped down before they make it off the ground, efforts made over the last few months seem be to coming to fruition. It’s scary to put it out there, but I’m crossing my fingers that I won’t jinx myself.
With regard to our battle with the school system, we have received confirmation that they’ve finally signed the contract committing to pay the annual tuition ($72,000) at Shane’s school in Tennessee. Although we haven’t gotten reimbursement back yet for the tuition we’ve paid for January and February, we’ve been assured that a purchase order has been submitted and we’ll get a refund soon.
Although Shane continues to struggle, he’s in the best place he’s been mentally (and physically) that he’s been in in a very long time. Change is always difficult for him, but he’s doing much better than anticipated with settling in. On days when we are sad and missing him to the inth degree, we do our best to perform a random act of kindness. We always preface it with our story about Shane and say that when we’re sad, it lifts our hearts to do something nice for someone. We can always tell when someone is hurting. It’s almost always a waitress with her own story that reminds us that things could always be much worse and we are thankful to those who take the time to share…the universe’s way of showing us that people can keep going long after most would’ve given up.
Advocacy and community service are near and dear to my heart. I want everyone to have access to care and an education. I want inclusion and acceptance for those who were born to stand out. Last week, I graduated from the South Carolina Developmental Disabilities Council’s Partners in Policymaking program. In January, I joined this Advisory Board for Best Buddies of North Carolina and I joined the Board of Directors for a charter school being built in our area. Two weeks ago, I was encouraged to apply to be on the Parent Advisory Board for the South Carolina Department of Education. I don’t know how long that process takes, but I would be thrilled to have the opportunity to be on the front lines with the government agency that directly makes decisions for programs benefiting those with disabilities fighting for those who need a Mama Llama in their corner.
After working with Legacy Studios for four seasons, I left last July. In January, I met with the owner who seems to share my enthusiasm for team building, positive changes, project management and genuinely coaching and mentoring others in the industry of school photography. They were kind enough to create a pilot position for me to help implement processes company-wide with the introduction of new software coming up in our busy season for senior photos. I’ve worked really hard to make a difference and to do my best. I’ve taken on the parts of Legacy that I love and I am thrilled with long term plans that have come to light that will eventually land me in my dream position in due time.
Someone once said, “If you don’t ask for something, the answer is always NO.” I never asked before. I thought I could do everything on my own. But, I’m asking now. I’m asking the universe to take care of our boy. I’m asking the universe to watch over our beautiful daughter and her boyfriend as they continue their adventures as traveling nurses. I’m asking the universe to guide me to organizations and positions that will appreciate my passionate pleas for fairness and equality. I’m asking that my husband continues his unwavering support and continues to tell me I’m beautiful everyday. We’re a great team. I’ve told the universe what I’ve always wanted to do professionally and hope that the stars will align to allow me to be successful and to help other grow professionally and personally. I feel worthy, ready and deserving of the next level in all aspects of my life. I’ve put in the work and am ready. Bring it.
It is often said that there’s a master plan for the universe. That things happen for a reason. That you’re given no more than you can handle. That what doesn’t kill you makes you stronger. That, eventually, you’ll find your place in the world. And, while there have been many times that I’ve questioned the universe, cursed it for the everlasting pile of crap heaped on those who don’t deserve it, I’ve finally realized that I’m right where I was meant to be all along. Where there was darkness, there is light. And, love, support, friendship, hope.
Today marked the completion of a six month program called Partners in Policymaking through the South Carolina Developmental Disabilities Council. During this time, I’ve gotten to know some of the most amazing humans I’ve ever met. Among them, the courageous self-advocates and professionals whose calling is that of saints. And, the moms.
Among the self-advocates are the women with beautiful souls inside and out who are learning to fight for themselves and inspire others to do the same. Some calmly and quietly, others out loud. Enjoying life THEIR way. There’s the guy who puts John Deere to shame by taking apart a lawn mower and putting it back together better, faster, sleeker than they ever could. The guy who loves to sing and makes his family so proud. The guy with one of the best laughs I’ve heard. The sweetest girl ever who sang Happy Birthday with more soul than Aretha Franklin. And, the support staff who protectively watch over them with love and kindness, but giving them the freedom to be independent. Rejoicing in their success and sharing tears for their sadness as a parent would.
Those who chose to work in the field of advocacy, teaching others how to find their voice, providing support to those who need it are beyond inspiring. They fight for the funding to keep the program going to help so many. All are passionate about the cause and all so very special who have each touched my heart in their own way. There’s one, though, that on the surface looks like she’s given up her life for others. There’s a sense of sadness in her. On the outside, it looks as though she’s done without so she can help others. She’s single with no pets or children. She exudes love, pure yellow. And, when she opens her mouth to speak, we listen. She takes us to church with every single word uttered; spoken with conviction, compassion, empathy, power. The truth of the matter is that while it may appear that she’s done without, she has more than all of us.
The moms. Oh, my god. The moms. Astounding, each with their own story of seeing their child (or children) struggle, in pain, ridiculed, crying, fighting. Fighting for inclusion, education amidst bureaucracy, medical care, benefits, friendships, and doing all they can to be the rock for their family while many are broken inside from the constant struggle. Fighting for things most take for granted. Feelings of belonging no where, struggling to find their place when friendships end as they put all of the time and energy into being an advocate for kids who are often so misunderstood. These are my people. The late nights, margaritas, queso, Door Dash, bottles of wine, jewelry, stories, tears, laughter, encouragement, understanding, beauty, determination, love. A sisterhood of women who have probably all wondered how they got to where we are in life, feeling as though they’ve lost themselves somewhere along the way. I know these women. I know who they are, what they’re made of. They are the ones who fight not only for their child and family, but for others like them. They are the ones who don’t just talk about how they wish things were different, they do what needs to be done to make sure things are different. They absolutely have lost themselves along the way. But, what they’ve found, what they’ve become, is something far greater and more beautiful than they ever would’ve been had they not been dealt the hands they hold. And, no matter how the cards continue to be dealt, you’ll never see them fold. Oh, no. Not THESE women.
Yes, the universe has a plan. It knows what it’s doing. It knows that you could give these women, men, moms, advocates, self-advocates the crappiest hand in the deck. And, we would know what to do with it to win. It’s in our hearts. Determination. Those who have been hurt the most often have the greatest ability to heal. So grateful to have met my people. This is my purpose. This is my life. These are my people.
#pip #partnersinpolicymaking #advocate #disabilities #autism #aintnostopingus #momfia