Parenting, whether natural or adoptive, can be a rewarding gift. Among these rewards are the triumphs of their children surviving adolescence, successfully reaching difficult milestones, graduating from college and — for many — becoming parents themselves. However, parenting children with special needs can lead to a much different trajectory that presents not only additional challenges but also profound triumphs for both parent and child.
As an outward-facing organization whose mission is to serve the community at large, it’s not often the Junior League of New Orleans (JLNO) has the opportunity to highlight members’ lives outside the League. In this feature, Lagniappe champions JLNO members who are parenting children with disabilities. These women and their families act as tireless advocates, ensuring their kids are afforded opportunities to learn, grow and thrive.
Meet Erica and Dookie
Active member Erica Camese and her husband are parenting their four-year-old son, Dookie, who was diagnosed with autism in November 2018. Erica notes that at the time of his diagnosis, her son was not as verbal as other children his age, avoided eye contact and displayed frequent repetitive motions. Dookie’s diagnosis of autism is in the mild to moderate spectrum, and his challenges present as deficits in verbal communication and social interactions.
Dookie visits with his healthcare specialists twice each week and is currently waiting to begin applied behavior analysis (ABA) therapy. Like other children his age, he loves Thomas the Train and completing educational activities on his electronic tablet. Though cognitively delayed, Dookie has developed social skills and enjoys engaging in displays of affection with the support of his parents. Erica is most proud of the progress her son is making with his interpersonal skills, including his willingness to share.
Erica says the most difficult aspect of caring for Dookie has not been managing her son’s special needs but rather her own attempts to receive assistive services. She describes “year-long wait lists” for specialist visits and varying experiences with healthcare professionals.
“I encountered some people who worked in the profession that were comforting and who helped along the way. On the other hand, some professionals were less than understanding — actually removing me from a parent help group, because I couldn’t always find a sitter for my son.”
Describing her son as empathetic, caring, sweet and funny, Erica marvels at how Dookie has taught her patience and a greater appreciation for life.
Meet Jenny and Sidney
Sustainer Jenny Longwell and her husband, Marshall, are parenting their special needs son, Sidney, who is 11 years old and was diagnosed with autism. Jenny’s journey began when Sidney began showing signs of special needs at 15 months old. He received his autism diagnosis seven months later. Sidney had been verbal during his early years of life but only began talking at age six. Sidney receives in-home ABA therapy twice a week and attends school three days each week.
As an adolescent, Sidney has identified some of the things he enjoys such as being in the presence of his parents and five-year-old brother, Reid. He also enjoys watching his favorite movies on his iPad. Jenny notes that when Sidney’s routine is disrupted, “I am likely to get some pushback in the form of yelling and a tantrum, but it’s typically short-lived. Every couple of weeks, something will set him off that leads to a meltdown that lasts hours.”
Overshadowing symptoms of Sidney’s disability are his small steps at major triumphs. Jenny shares how Sidney’s independence with his activities of daily living and helping around the kitchen has been cause for celebration in the Longwell household.
You may have even seen Sidney marching alongside his Storm Troopers Krewe peers in the Chewbaccus parade this past Mardi Gras.
“When he began to speak and was finally able to express his needs and desires, it was a turning point in our lives. It gave us more insight into his personality and let us connect in a new way.”
As a child psychologist specializing in developmental disabilities and an ER physician, respectively, Jenny and Marshall were equipped to provide Sidney with the care and resources required to address his needs. Jenny offers the following advice to other parents of children with special needs: “Always remember that there is only one of your child, no matter the diagnosis. Just because something worked or didn’t work for a kid that is similar, that does not mean you will have the same results.”
Meet Courtney and Peter
Courtney Nalty, Sustaining member, is the mother of eight-year-old Peter, who was diagnosed with Down Syndrome at birth. Courtney describes Peter as non-verbal but very vocal. Peter understands and responds to verbal communication from parents and peers using assistive technology to engage in dialogue.
Courtney and her family attribute much of Peter’s success to their own advocacy on his behalf. They have also received support from organizations such as Down Syndrome Association of Greater New Orleans and JoJo’s Hope in Elmwood.
Courtney confesses she is not prone to make waves but says, “his teacher and school know that I am not just going to sit by and hope he gets a good education — he will be educated just like any other human being.”
Her best advice to other parents of special needs children is patience and being present. “Take deep breaths every day all day. Truly live in the moment: that day, that hour and focus on the now. If you worry too much about what your child will be doing in a few years, in high school or thereafter, you will drive yourself crazy.”
Courtney describes Peter as an “early riser” who dresses himself and requests lots of carbs and milk for breakfast. Independent and attentive to his own needs, Peter decides what he will have for lunch —chicken nuggets, raisins and oranges are among his favorites. Peter’s many milestones include learning to shoot a basketball, hit a baseball and swim. Still, Courtney says the most significant milestone she’s shared with her son was hearing him verbalize the words “I love you.”
“I waited a long time to hear it from his lips, and it was worth it,” Courtney says. “I love hearing it every day. It never gets old.”
The National Parent Teacher Association offers resources for parents of special needs children here