As we wrap up March, it's the perfect time to acknowledge that this month is Disability Awareness Month. This is the time to bring awareness and understanding as well as allow for opportunities to support and recognize the rights for those with disabilities in our country since 1987. As a mother, I know the worry, stress, and concern that comes with parenting children. However, when you find out your child has a disability, I can only imagine that those emotions may sometimes be intensified.
That lead me to chat with a former colleague and friend, Nicole Flores, who is the Executive Director of Families Helping Families of Acadiana. I worked with Nicole several years ago, and we both had young children at the time, which meant childcare, homework, and after school balancing acts as working moms outside of the home. Nicole's story always inspired me and I wanted to share some of that with you this week. I sat down with Nicole a couple of months ago to catch up and chat with her about her now 15 year old daughter, Lilian, and some of the struggles they have faced with her premature birth.
 Image by Nicole Flores | Nicole and her husband, Rene, were faced with Lilian's very early entry to the word at only 26 weeks. Lily, as her parents call her, was only 1 pound, 4 ounces at the time of her birth. As Nicole said, she was the size of a 20 ounce bottle of soda! They knew that her very early arrival meant that they may be faced with numerous medical challenges and developmental issues. As Nicole explained to me, some of her daughter's initial diagnoses when she was born included being a micro-preemie, respiratory distress, level 1 brain bleed, ROP (retinopathy of prematurity stage 3 which can cause vision impairments), and PDA (small hole in the heart). |
Most of Lily's early childhood included endless medical issues, therapists, doctors, and plenty of hospital visits. Her parents always suspected other diagnoses as Lily grew, but those suspicions would take years to nail down. When her daughter was born, Nicole knew that she needed to accept her daughter's diagnoses and push on with just being her mom. She stayed with her every moment possible and only allowed herself to be positive when she was with her daughter. She insisted that anyone who visited kept that same positivity as well.
I asked Nicole some candid questions about being a parent of a child with disabilities and what insight she can offer to other parents who are looking for support. Here is what she said:
What can you recommend to other parents who are facing the challenges of having a child with disabilities?
"I was angry that it took over 13 years a diagnosis of autism for what seemed to be almost a textbook range of symptoms that were overlooked simply because she had other medical issues. I would start making family a priority as early as you can. Dig deeper for answers and resources as soon as you can rather than just accepting what you are being told is available as assistance to you."
"The stress, fear, and doubt wear on you each and every day. I handle it by thinking about how I can handle what I am dealing with at this particular moment, and talking with other parents to share our feelings and talk through how we deal with all of some of the negative emotions."
What has helped you the most in parenting Lily?
"Continually remembering to treat her like I'd want to be treated and just enjoy her and enjoy watching her grow up."
How did you navigate doctor appointments, school, work, daycare, monitoring of Lily’s condition while you were away from her?
"We were able to do this with help from family and an incredible team of teachers and daycare workers. We were very lucky and NEVER had issues with school or daycares. They always offered us the support we needed for Lily."
How are you preparing for the teen years and beyond for Lily?
"Honestly she is acting like a neurotypical teen so it's easy to let her hang out in her room and avoid her parents! We are trying to get her to learn more self-help and life skills. We are looking into Special Needs Trusts, ABLE Accounts, Tutorships and setting her up with supports when she is an adult and working with Families Helping Families of Acadiana, I continue to work to improve opportunities for people with disabilities in high school and beyond."
How do you handle rude/inappropriate comments?
"To be honest, we haven’t gotten many rude or inappropriate comments. However, when it does happen, I take them as a teachable moment. I approach the person and introduce myself and Lillian and explain she operates differently from that person…but is not less. I tell children/parents who meet a child with a disability for the first time to introduce themselves and be open to making a connection."
Families Helping Families of Acadiana
Nicole said the big thing that she wants to leave with readers is that there are a LOT of resources and support available for people with disabilities. As the Executive Director of Families Helping Families of Acadiana, we want to help families connect to those resources, as well as help them learn what they need to do to advocate for their child and teach their child to advocate for themselves."
If you are looking for support for yourself, your child, or a family member, Families Helping Families of Acadiana is very active in our community serve the parishes of Acadia, Evangeline, Iberia, Lafayette, St. Landry, St. Martin, and Vermilion. They offer monthly resources, trainings and workshops around the area supporting families and advocating for disability rights in our area.
There are actually 10 different regions of Families Helping Families. This network of agencies works together to support the families that they serve ensuring ongoing support is available, provide updates on the latest laws surrounding disability, and offers resources and classes both in person and virtually with other agencies in our area.
You can visit them online at https://www.fhfacadiana.org/, connect with and follow Families Helping Families of Acadiana, or call the office at 337-984-3458.
