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Being a first-time Mom of a child with special healthcare needs

"Autism?" Spelled Out In Child's BlocksMy son, Jaymes, was born in August 2004, and to me at least, he was the most perfect baby. He never fussed or cried, and people would always remark how quiet and well-behaved he was. Everything seemed to be going along great when I took him to his fifteen month checkup at the doctor. As the doctor asked us questions about his development (“Is he talking?” “Running?” “Imitating things that you do?”), I realized that he might be a little delayed in some areas. As a first time parent, I was clueless to what our child “should” have been doing at that age. Luckily, our pediatrician immediately referred us to begin receiving services through our state’s early intervention program.

Jaymes began receiving speech, physical and occupational therapy shortly after that appointment. We spent countless hours every week at the clinic near our house, and Jaymes started showing progress. He started talking, trying new foods and textures, and even interacting with other children. The pediatrician told us that he had developmental “delays” and we believed that he was just taking some extra time to catch up to his peers. In 2007, we moved to South Carolina and transferred all of Jaymes’s services to our new state. As part of the process, his early interventionist wanted him to undergo diagnostic testing by the autism division of the department of disabilities and special needs. I wasn’t worried, I looked up all of the signs of autism on the internet and Jaymes didn’t seem to fit them. Plus, none of his therapists had even mentioned autism to us. The testing took about 2 weeks. They wanted to observe Jaymes at home, in their clinic, and at his school. Finally, the results were ready. They called us in to the clinic and told us that they had decided to diagnose him with autism. This news hit us like a ton of bricks. My husband and I went home, in shock. “Autism? How could our perfect child have autism? I don’t even know what that means!” So for a few weeks, we wandered around in a dazed state. Finally, I decided that I had to take action and find out what kinds of resources were out there. After some research, I found so much information on agencies, applications, and meetings. It was overwhelming and I didn’t even know where to begin. I still wasn’t ready to process all of it, and life went on, in this new state of normal.
Several months later, I was cleaning out drawers and came across some information I had found again. This time I felt like I was ready to tackle it. One of the first brochures I pulled out was for an organization called Family Connection of South Carolina. Their pamphlet said that they could connect me with other families who had children with autism, so I decided to give them a call. Soon, I had been matched with another parent whose child had autism and I was attending support group meetings, family events, and educational workshops. My family (which had now grown to 5 members) and I participated in everything that Family Connection offered.

One day, in late 2011, I received an email that the director of Family Connection for our area was leaving her position. I wasn’t looking to leave my current job, but my husband told me: “You should apply for that job. You would be great at doing stuff like that…supporting other families. After all, that’s pretty much what you already do anyways!” He was right. If I met someone in the grocery store whose child had a disability, I told them about all sorts of different agencies and programs. So, I applied for the job, was hired, and become the program coordinator for Family Connection in my area!
As part of my involvement in Family Connection, I was honored to be selected as one of the Association of Maternal and Child Health Program’s (AMCHP) Family Scholars in 2012. The Family Scholars Program is a training program for emerging family leaders. Through the program I was able to increase my knowledge of emerging local and national issues that relate to children and youth with special health care needs, as well as hone my advocacy skills by visiting with my senators and congressmen in Washington, D.C. My participation in the Family Scholars Program led me to take on a new position within Family Connection, managing a parent-to-parent support program through our state’s Title V agency, wherein we have trained parents in local health clinics throughout the state to help families navigate the resources available in their local community.

I’m grateful that I work for a family-serving organization, because everyone there is also a parent, and understands doctor’s appointments, medical emergencies, and most importantly, mental health days! My co-workers are also there to support me emotionally when my son’s journey hits a rough patch. Hearing the voice of another parent saying, “I know exactly what you are going through” was a groundbreaking experience for me and I am truly grateful for it. Talking to others is a vital part of any coping or healing process. This is why I felt so compelled to work with families who have children with special healthcare needs. It gives me the most fulfilling employment experience I have ever had, and I am so glad that I am able to help others find the same comfort that I did in knowing that there are others out there to share your journey with you.

TracieTracie L. Hayward is the Lowcountry Area Coordinator and Project 360 coordinator for Family Connection of South Carolina. Tracie has three children, ages 10, 8 and 3. Her ten-year-old son was diagnosed with autism at age three, and she has been involved with Family Connection as a Support Parent since his diagnosis. In her free time, she enjoys reading, travel and getting together with family and friends. |

2 thoughts on “Being a first-time Mom of a child with special healthcare needs

  1. You are amazing! I know I don’t work in your specific program but working within the same nonprofit with you is great! You have similar views as I do. Connecting families is key. Don’t know what I would have done with out the support of another parent by my side! 🙂 keep up the great work!

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