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Saturday, November 14, 2015

Parents of Children with Autism Find Kinship with Research Center in Lexington, MA

From Wicked Local Lexington

By Al Gentile

November 10, 2015

As a mother of a child with autism spectrum disorder, Lisa Connor wants to let parents of children with autism know they are not alone.

“It’s a balancing act,” Connor said. “It’s really difficult when you have a child with special needs.”

Connor and clinical research coordinator Dema Hakim have organized a Coffee Convo series, a monthly meetup for parents of children with autism spectrum disorder (ASD) at the Lurie Center For Autism in Lexington.

Autism spectrum disorder is a neurodevelopmental disorder associated with repetitive behavior, difficulty establishing social connections, and often language impairments. The Center for Disease Control and Prevention reports as many as 1 in 68 people are on the autism spectrum.

Hakim said she wants these meetup will give parents “a more formal, yet comfortable place to meet each other.”

Connor hopes the meetup will help parents to find themselves in the struggle with autism.
“As a parent of a kid with special needs, you’re the last one on the totem pole,” Connor said.

The Lurie Center For Autism in Lexington is a facility affiliated with the Massachusetts General Hospital which specializes in the medical care and the therapy for people on the autism spectrum and the center serves as a research facility.

Each meetup includes a presentation on a topic of interest, such as how to reduce their own stress and updates on new research being done on how to treat and education children with autism. The Coffee Convo, Hakim said, is less a support group and more a casual meetup where parents can “come together, lay back a little, and share experiences.”

“There is a short presentation that would be of interest to them in the care for their loved one,” Connor said.

Both Hakim and Connor agreed the kinship developed between parents experiencing the same struggles with autism is valuable in a way that is different than a relationship with a doctor.

“I think they can get a lot of hard facts from doctors, but when you talk to parents they just have a different perspective,” Hakim said. “They seem to open up more.”

As a Parent

Connor is no stranger to the difficulties of parenting a child with autism. From dealing with Individual Education Plans (IEPs) in the public school systems to helping her daughter, Polina, establish much-needed social connections, Connor knows the issues connected with autism can be overwhelming for parents.

“It’s not for the faint-hearted. It’s more like a full-time job, trying to keep the family together,” Connor said. “I had to go through the journey, and it’s a complicated one.”

Many aspects of being a parent with a child who has special needs, Connor said, are not well explored because in many cases parents only have their doctors and specialists to talk to. The Coffee Convo aims to be part of a larger, holistic approach to dealing with autism.

In the end, Connor said the ability to accept what has happened and to reach out to the right resources are paramount to dealing with a child with special needs.

“It’s about accepting what is and that it’s OK,” Connor said.

The Coffee Convos are scheduled for the third Thursdays of every month. The next meetup, scheduled for November 19 from 6:30 p.m. to 7:30 p.m., will focus on Holiday Stress. All parents dealing with a child of ASD are strongly encouraged to attend.

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