How the Advocacy of Parents, And the Help of LifeROOTS, Helped Create a True “Success Story”
Dr. Pamela Martin vividly remembers the moment she knew she had become a parent advocate for her twin sons – born prematurely in 1976 and each facing multiple medical problems right from birth. Standing at the front of her seven week-old son’s crib at NYU Medical Center where he was waiting for a shunt to be put in for surgery, she could just tell that he was dehydrated – and refused to let him be taken in for surgery that day. When a doctor later came in and agreed with her for insisting on postponing the surgery, she knew how important her role as a parent advocate would be in making sure that her sons always got the right care — and for many years to come, she continued to be an outspoken advocate for her children as together they navigated the challenges facing children with disabilities.
Although sons Jason and Scott weren’t officially diagnosed with their disabilities until between the ages of two and three, it was clear early on that they each had delayed motor skills. Upon moving to New Mexico when the boys were two, Pam brought her sons to “Programs for Children” at UNM – where, after diagnostic tests and guidance from “an incredible pediatric orthopedic surgeon”, it was recommended that she take the boys to LifeROOTS (which was then on the UNM campus) for services. That move, recalls Pam, was a crucial step towards helping the boys not only receive the services they need, but truly grow and thrive during those important developmental years.
“That time was a critical period for our family,” remembers Pam, who notes that being a full-time working mother also added to the challenges of busy schedules and the need to get the boys the services they needed. “At LifeROOTS, not only were the boys able to receive all of the therapies that they needed, but LifeROOTS provided them with a nurturing learning environment that met their early education and pre-school needs. By providing the boys with both special services and a supportive learning environment all in one place, LifeROOTS made it possible for the boys to learn without being limited by their physical disabilities – and made all of the difference during those important early years.”
After such a good experience at LifeROOTS, though (where she still recalls the “amazing staff and the support system she built with other parents in the program”), Pam soon found that she would need to resume her role as an advocate for her sons as they entered public school at age 6. Remembering that “public school was such a shock” and recalling many instances where she had to advocate for each of the boys in order for them to get the services they needed, she hopes that other parents have also taken on the role as advocates for their children, and offers some important insight from her many years of helping both of her sons reach their true potential.
“I really believe that more attention has to be paid to parent advocacy,” she says, further noting that although both she and her husband have Ph.Ds, they often felt at a loss and confused as they worked to get the right care for their children. “No matter how wonderful your doctor may be, or how you think your child is getting the right care, you have to be the main case manager for your child. You have to know your rights and, most importantly, be vigilant when it comes to looking out to make sure your child is getting everything he or she needs so that they can not only receive the best care as a child, but can go on to achieve their dreams as an adult.”
For sons Jason and Scott, their parents’ hard work and advocacy (as well as their early years at LifeROOTS) most certainly paid off – as both have gone on to not only become successful adults, but truly live their dreams. After graduating from law school and serving as a public defender, Jason has spent the past four years as a disability attorney in New Mexico. Scott, who graduated from college in Texas and earned two master’s degrees, went on to become a teacher in Japan – and is currently working on his first novel. Both are happily married and Jason has two children.
Having been through years of raising children faced with physical challenges, Pam now hopes to empower other parents with her story of advocacy – and success.
“It’s important for parents of a child with a disability to remember that they can be their child’s most important advocate,” stresses Pam. “Help is out there, and there are so many supports that you can find to help both you and your child. Find the strength and power to do whatever you can to ensure that your child gets the help that he or she needs – and never stop fighting for your child.”