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Erin Lamb hopes to raise awareness of something she calls “person first language,” through which the person is recognized before his or her disability. For instance, instead of describing someone as a disabled person, Erin would like to hear people descibe a person with a disability, keeping the emphasis on the person. @SPN Cut credit:Photo by Jaki Lauper/The Courier

Erin Lamb hopes to raise awareness of something she calls “person first language,” through which the person is recognized before his or her disability. For instance, instead of describing someone as a disabled person, Erin would like to hear people descibe a person with a disability, keeping the emphasis on the person. @SPN Cut credit:(Photo by Jaki Lauper/The Courier | Buy This Photo)

Erin Lamb: Battling the Disability Stigma

Published May 20, 2015

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North Haven mom and advocate Erin Lamb’s journey into special needs parenting began six years ago when her first child was born. All new moms have an adjustment period during which life changes completely, but in 32-year-old Erin’s case, it went much deeper.

All seemed well with her pregnancy, but soon after her son’s birth, Erin found out that he was born with a unique genetic disorder—so unique that Erin was told that Gabriel was the only documented case in the world.

“Gabriel is missing some genes on the long arm of chromosome four, but they don’t know what those genes contain since he’s the only case of its kind,” she explains. The disorder “doesn’t have a name other than the numbers used to describe his particular chromosome deletion, which is 4Q26-31.21.”

As a result, Gabriel is small for his age and he has some sensory integration issues. Transitions are difficult for him, Erin says, but he’s otherwise a happy, normal kid.

Gabriel also has autism spectrum disorder, which is believed to be a result of the chromosome disorder, but since he’s the only one with this particular genetic disorder, doctors can’t be certain.

Erin admits life has its difficulties, but together she and her husband, Don, have adjusted and thrived and just three years later found out that their family was expanding again, in a big way—four more, to be exact.

Erin gave birth to quadruplets (two girls and two boys), now three years old and thriving, but Erin’s family was once again hit with a health challenge. Isaiah, one of the quadruplets, was diagnosed with cerebral palsy and currently uses a walker.

Through all the emotional, physical, and financial challenges, Erin feels her family has come back stronger and wiser, learning many lessons along the way. She has also learned a lot about early intervention, special education, health care, and the health insurance system.

Thankfully, Erin says, “I have a lot of [family] help, and the kids are good sleepers!”

Erin has served as parent representative on the Connecticut Birth to Three Interagency Coordinating Council and recently graduated from Connecticut’s Partners in Policymaking, an advocacy training program for people with disabilities and parents of people with disabilities.

Getting more involved in the system opened Erin’s eyes to a great gap of understanding between the disability community and the general population, so to raise awareness of people with disabilities and the stigma that often accompanies those disabilities, Erin started Lighted Path Consulting, LLC.

Erin studied business in school and says, “I always wanted to own a business, but never figured out what my passion was until the kids came along.”

Erin started her business in March with the help of family members including her mom, Lynette Godburn, a pediatric nurse, who retired early to assist Erin with the kids and the business.

Lighted Path Consulting’s focus is on advocacy and coaching for parents with special needs kids who need assistance navigating through the education and health care system.

“I believe that knowledge and open, honest dialogue can truly raise awareness of people with disabilities and help remove any stigma,” Erin says.

To nominate a Person of the Week, email Jaki Lauper at j.lauper@shorepublishing.com.

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