As the executive director of a nonprofit serving individuals with disabilities, I have become a go-to in my community for all things disability related. I have been asked by a local Census group to help reach the disability community for the upcoming Census. I am asked to speak at conferences on my role as the sibling of someone with a disability. I am part of a coalition to bring workforce diversity to my community. But because of my passion to serve this the disability community, I often get phone calls from parents needing advice or just reaching out for someone who understands the journey of raising a child with a disability.
Today, I hung up the phone for the third time with a sigh and deep breath — a breath that I sometimes have a hard time catching, because it gets weakened by the weight of these parents’ struggles and desperation. It’s a weight I chose to carry, because if I don’t, who will? A weight that I wish my parents had someone carrying for them throughout the years as they raised my brother with a disability.
To those parents…
It’s hard to not hear your tears through your voice.
It’s hard not to hear your shaken spirit as you share your journey.
It’s hard not to feel your saddened heart when you describe how the struggles are real.
It’s hard not to feel the intense fear you have of an unpredictable future.
Though I choose to carry the weight, sometimes I need an outlet to dump all the extra pounds. Enter this blog post. I have realized that I tend to spend so much time pouring into others and offering a listening ear and words of comfort, that I need to share my experience and emotions.
For the reader that has no clue what weight I am talking about, let me attempt to describe.
At 8:34 a.m., I received the first of three heavy phone calls for the day. It was one of my dearest friends whose little boy has autism. He is the cutest, sweetest little boy who at 4 years old still hasn’t found his words just yet to communicate. In this particular phone conversation, I can hear in her voice the desire for guidance. A direction. A path that will lead to success. Her four-year journey to this point has already led her to so many different paths, and none with solid answers of which direction to go. As an educator and provider of services for those with disabilities, I want to solve it all for everyone. I want to provide the right answers to all parents, but when it’s your dear friend you want to dig deeper. I will never forget the day I cried with her on a previous phone conversation, because the next steps for resources were scarce. She would have to navigate if her insurance would cover what he needed, and if it didn’t she would have to fight for it. Not to mention the incredibly long waiting lists for services. I will never forget that lump in my throat as I tried to find the right words to support and offer hope. During that conversation, she shared, “I just want to hear him call me mommy.” That day, I heard her plea and I decided to carry the weight with her.
Just before noon the second phone call came in. A young mom of a 5-year-old boy, who not only has autism but some additional medical concerns, is on the other end of the line. Her sweet voice asked me to provide her with knowledge on the programs we could offer to her son. She was hopeful this could be the answer to her prayers to ensure she had speciality support for her son, so she could keep her full-time job. She needs her job to provide for her family, but as her son ages, finding care to support all of his behavioral, communication, and medical needs has been a struggle. Then the part came that broke my heart. I explained that although the programs I have created for those with disabilities have been successful to many individuals like her son, my nonprofit is currently on a waiting list, and there is a chance she would not get immediate services and support. There was a pause. When she finally spoke, I could barely understand the words because the cries of defeat overshadowed. Unfortunately, this is the kind of cry I hear all too often. As she continued to share she would lose her job if she couldn’t find the support for her child with special needs, all I could say was I understand and I will do my best. She wasn’t just another conversation to me. She was a real mother with real fear, and wanting the best for her child. That day, I heard her tears and I decided to carry the weight with her.
The end of a busy Tuesday was near, but not before I got the last of my three emotional phone calls. A strong, independent business woman who is a mother to a 10-year-old boy has tried calling several times to talk with me and we finally linked up today. Her voice was strong but scared as she asked if I thought her son could have autism. A question that has been asked to me more than one could ever understand. Without any prompting, she shared experiences, examples, and provided me with a glimpse of what her son’s life looked like. She was at a loss. I could tell she is one that is always in control and a problem solver in everything she does. However, this was leaving her empty and confused with no direction or answers. Teachers communicate how smart he is, but struggles to focus and demonstrates inappropriate social skills around peers. Family members told her she needs to discipline him more. His pediatrician said he is showing signs of autism, but doesn’t meet all the criteria for a full diagnosis. All the while, behaviors are spiraling out of control at home, and this lost momma has turned to me. I have to find the words to provide hope for this mom. I take a deep breath. I say “we will figure it out together,” because I knew she just needed someone with her. Fighting for her. Fighting for answers for her son. That day I decided to be a warrior with her and carry the weight.
These conversations have me always looking for ways to help. They are not just another conversation to me, they are real people who need real support. The waiting list for services are not just numbers on a sheet of paper. They are people. People who are like my brother. People who have families who need support. People who have stories that would make you fight for more. People who need more than a life line. People who deserve far more than what they get. People who sometimes are forgotten when it comes to our federal government making policies and regulations that affect their entire life. People who make me want to carry the weight with them!