Post Author
Michael Cooper
Senior Director of Advocacy
Nikia, tell us about yourself and Trusted Parents.
My name is Nikia Bye, and first and foremost, I am the mother of the most fantastic young man who happen to be diagnosed with intellectual developmental delays. Because of his diagnosis I became an advocate, a service provider, an entrepreneur, and just a person in the community trying to help others like him. I am a mom and wife first, then I am the other things. I have three children: a 32-year-old, a 27-year-old, and then Malyk who will be 25 in December.
When did you know that Malyk would face some challenges in life and how did that change your life?
Malyk was full-term and I had an overall healthy pregnancy. After he was born, I noticed that his physical development was slower than that of his siblings. The pediatrician told me not to worry and that he would hit his developmental milestones in due time, but he never did. Around his 12-month checkup Malyk had a seizure that almost took his life, and from that moment I knew he was going to require more special attention.
At that time were there resources available to Malyk and your family?
The landscape at the time was that there were no resources available in my immediate area. It was all about who you knew, or the right connections. I struggled trying to find a support system that was right for me and my family. Please understand, it was not that there were not any services, the problem was that the support and services were not readily attainable to those in my tax bracket. The support and services I needed was in more affluent neighborhood, and I had to travel quite a bit just to benefit from them. When I realized the difficulty of obtaining the resources needed for my family, I also realized there must be other families dealing with the same struggle, so I created [Trusted Parents].
What had your life been like before?
Before Trusted Parents I worked in investments at Bank of America. My banking career started straight out of high school, so when I left my job I was the breadwinner of my family. I started out as a teller and worked my way up to being the executive administrative assistant to the vice president of the investments department at Bank of America. I was very secure in my career, but I realized Malyk needed more one-on-one assistance and the support of his mom. I realized that the childcare center he attended did not know how to care for him, as he was suffering daily from seizures, not walking, nonverbal, and severely behind developmentally. So, me and my husband made the decision that I would stay home to care for Malyk, and he would pick up a second job to compensate from my missed income. I became a stay-at-home mom to give Malyk the support he desperately needed at that time.
Talk about the challenges that your family faced and that other families face.
What I noticed was parents desperately looking for a place to send their special needs children, which would give them the quality of care they needed. Quality child care especially when they are young, is most important, which is when things seem to be the most critical. The child has a new diagnosis; therefore, the family as a whole has a new diagnosis too. Parents are trying to figure things out, and help their children adjust, all while they try to adjust to a new way of living. This can have a traumatic impact on the entire family. In fact, I am working with a mom right now who is facing eviction because she is unable to work consistently because of her son’s behavioral issues associated with his diagnosis. Her son’s school is constantly calling her to come pick him up from school because he is a constant distraction to the classroom environment. Jobs are not always forgiving to parents, especially single parents, who have children with a diagnosis of some sorts. Yes there is FMLA, but it can only go so far when there is a child that needs consistent support.
How old was Malyk when you founded Trusted Parents?
When I stopped working in banking Malyk was 2 years old, but when I founded Trusted Parents he was 10 years old. The journey of Trusted Parents began unofficially when I started helping other parents, just being a Good Samaritan. Even though I was home with Malyk and my two other children, I wanted to be a support to other parents who were dealing with some of the same issues I was. As I navigated searching for information that would help my family, I shared what I found out with other moms. Taking Malyk to therapy three times a week became very therapeutic for me, as I would meet with other moms to talk about the struggles we shared when it came to caring for our children. We would share the information about the resources and services we found in the community that could be beneficial to our families. The thoughts of coming together as a support group meeting started when I was taking Malyk to therapy, which was how Trusted Parents began.
What was that journey like?
In the beginning it was very hard, and there were a lot of tears. I remember wanting to throw in the towel many times. I distinctly remember a day when I was so distraught and was on a rant to God about why He chose me to do this work. I remember driving on a highway, just driving, driving, and driving, and I had just made up in my mind that I was not going to do the work anymore, and then my cell phone rang. It was a parent who was calling to thank me. She said to me, “I don’t know what I would have done without your help and support and the support that your organization brings.” It was at that moment that I was like, ok, I am doing something that is bigger than myself, and I prayed to God to give me the strength to stay with it a little while longer. That was almost 14 years ago.
It is a lot of hard work to serve the community. We are only one organization and there is a lot of programs and services needed, and as one organization we cannot reach every family. As a parent, when you hear the stories of mothers or fathers struggling to find support, it pulls at my heart strings because I am a part of the community I serve, and I can personally relate to what parents are dealing with. I too, am a part of that lived experience, so I understand and recognize that there is a lot of work that still needs to be done, as well as the gaps in services needed.
What kind of services does Trusted Parents provide?
Trusted Parents is a navigational organization. We started out truly as a support group meeting, then we went to IEP advocacy services. Accompanying parents to IEP meetings so they can create the best individual education plan for their child and to ensure they get the best accommodation needed while they are in school. We then got accredited in Triple P Services, offering parenting strategies and solutions to parents to better handle unfavorable behaviors that can be associated with their child’s diagnosis. We help parents navigate through those behaviors offering them strategies that can change the behaviors for the better.
We are guardianship consultants, advising parents about the laws as they pertain to their child turning 18 and how it can affect their role as their parent when it comes to making decisions concerning their needs. We offer trainings and workshops for parents to educated them on how they can be an effective advocate for their children, and their families.
In addition, since 2016 we became a sponsoring agency for Family Support Network of North Carolina. So, we offer their Parent Mentor Program, where we can match parents with parent mentors who are dealing with the same or similar diagnosis and who can offer support.
We have two summer camps and recently opened and piloted a day program servicing individual 18 and older with IDD, which will open officially in October. I love offering children who do not normally fit into traditional settings the opportunity to fit in at one of our summer camps, or now, our day program, which will offer life skills through an instructional and recreational curriculum. It is a way to provide the continuous support they need to live a life that is self-sufficient and independent as they get older.
It sounds like Trusted Parents has made a considerable difference.
Trusted Parents have supported and served so many families through the years. There are so many great testimonies of the work that Trusted Parents has done. The team of individuals who work hard and play an intricate part of improving and enhancing the lives of the families being served through this organization is second to none. I for one, love to see the difference being made through the services being offered, rather it’s through our IEP advocacy, Guardianship Consultation, or the summer camps, the work being done is making a difference.
I believe our summer camps has the biggest impact on the individual themselves… We have campers who have been with us since day one since, since the camp first opened its doors, and parents will tells us all the time that “there is no other camp like yours, we can tell that you all really love our children.” The work that we are doing, the support that is being given, the advocacy that is being done in the community, is enhancing and empowering families. It is changing lives in some way, shape, or form.
What is the landscape of services like today, outside of Trusted Parents? I know the pandemic was a disruption.
When I started there were fewer resources when it came to therapy and support agencies. Now there are so many different organizations, but we still need a focus on the impact on how families are raising and caring for an individual with special needs. For some reason society believes that when a child or young adult turns 18 the diagnosis goes away. In fact, it does not. The parent needs continuous support. But the resources go away. And if you do not provide support for families it causes more issues when it comes to their health and well-being. The pandemic has made an even bigger disruption in the services being offered to young adults with IDD. In fact, because of the ramifications of the pandemic we are seeing more mental health issues in individuals with diagnoses like autism, and intellectual and developmental disabilities. More agencies are paying attention to the mental health of these individuals, which is a great thing, but there is still a huge lack in resources being offered.
What changes would you like to see and how can advocates support that?
I would love to see more inclusion. I would love to see more inclusion of individuals being accepted in society and see policymakers make more of an effort to support families like mine. I think about this, because I think about the future of my son and how his life would be impacted by the decisions of this world. There are programs, but there is also a lack of funding, which means those needing supportive services will not get it. The list of unmet needs is too long in NC, so there are tens of thousands, dare I say hundreds of thousands of families still waiting to receive services. There have been some improvement made through the new Medicaid Expansion program, but there is still so much work that needs to be done, especially for special needs families and individuals. I would love to see people paying attention, especially lawmakers who fight for the laws concerning our state. That they are paying attention to communities like the one that I am a part of and families like the ones I serve… I am driven by the needs of my son Malyk, and what is lacking in the community. It is that, that drives me to create and make a difference.