As her son was getting therapy for Asperger’s syndrome, Bridget Mora of Chapel Hill often found herself swapping information with other parents in the waiting room and writing long emails sharing the information and resources she’d found in the course of her family’s journey. Her husband suggested she gather everything into one place that was accessible to everyone, and the CHART (Chapel Hill Autism Resources and Tools) website was born. CHART offers list of books, therapists, local events and other resources to help families dealing with autism connect with sources of help as well as with each other. We talked to Bridget about how CHART got started, what people should know about autism and ways North Carolina could improve life for autistic people and their families.
Q: Tell us a little about yourself, and about your family.
A: My husband, Peter, works for First In Families of North Carolina, a nonprofit that serves families and individuals affected by developmental disabilities. I work from home as a customer service manager for an international company and as a freelance writer; I am very fortunate to have a flexible job that allows me to care for my son after school. I also volunteer for the Autism Society of North Carolina Orange Chatham Chapter, Central Carolina First In Families, and the Special Needs Advisory Council for Chapel Hill-Carrboro City Schools. You might say I have a hard time turning down a good cause!
Our son, Holden, is 6 years old and in kindergarten. He is a bright, funny, lively, active boy with an amazing mind. He was diagnosed with Asperger’s syndrome (high functioning autism) at age 3 ½. We also have a delightful little “therapy cat” named Milky. Holden loves all cats – his current plan is to save the snow leopards in Mongolia when he grows up.
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Q: When did you start CHART, and why?
A: We started CHART (Chapel Hill Autism Resources and Tools) in the fall of 2011. The blog was my husband’s idea. Over the course of our journey with our son, we have learned a lot about local autism and sensory resources (and read a lot of books!). I frequently met other moms in the waiting room of therapists’ offices and would end up writing them long emails sharing information. Finally my husband suggested that we gather all of the resources we had found together in one place where everyone could access them. And CHART was born!
Q: Do you think the Triangle is a fairly autism-friendly place? How could it improve?
A: Overall, I do think that the Triangle is a pretty autism-friendly area. We have a tremendous wealth of world-class autism experts in the area, both in research and private therapy. There is a good support network (especially for moms) and nice range of inclusive activities for families offered through the Autism Society of North Carolina, TEACCH, and other local organizations.
However, the lack of access to services is a tremendous problem across North Carolina, and it is driving families out of the state to places where their children can get needed therapies. Although we have incredible resources in the Triangle, many families simply can’t afford them. The problem is two-fold: the waiting list for the Innovations Medicaid waivers (formerly known as CAP) is over 10,000 people long. And private insurers are not yet required to cover autism treatment in North Carolina. Hopefully that will change this year: an autism insurance reform bill passed the N.C. House of Representatives in 2013; if the state Senate passes it into law this year, it could be truly life changing for so many families.
Q: What do you wish people who haven’t dealt with autism knew about children with autism and their families?
A: To withhold judgment on the behavior of the children and the parenting style of the adults. Effective parenting of a child with autism may look different than people are used to. For example, a parent might strategically ignore negative behavior and heavily reinforce positive behavior; that could look like “condoning” misbehavior to the untrained eye, when in fact it is a more effective way to teach appropriate behavior than punishment. I would also like for people to understand that when a child with autism is doing really well in a situation, it probably means he is also working extremely hard at that moment.
Q: What's your favorite thing to do with the whole family in the Triangle?
A: We had an awesome time at a Carolina football game in the fall (go Heels!), and love to eat pizza from Alfredo’s in Chapel Hill. Holden also plays in a flag football league and his dad coaches; I keep the stats.
Q: What's your favorite thing around here to do when you get a few hours to yourself?
A: To shop by myself or with a friend, especially for organizing supplies. A trip to the Container Store is pretty much my idea of a dream afternoon.
Q: What's the best parenting trick you've picked up?
A: My son has always had a terrible time sleeping, so I’d say the best trick I have picked up is to stick with a very consistent bedtime routine every single night. We are also very consistent about the time he goes to bed, even on holidays and vacations.
Q: What's the best advice someone has given you about being a mom?
A: That the best way to help my son calm down is for me to remain calm.
Q: What's your least favorite part and most favorite part of being a mom?
A: The least favorite part is easy: lack of sleep! My favorite parts about being a mom are almost too many to count, but I would say I especially cherish reading books and snuggling with my son. It is also very exciting to see the thoughts and ideas that come from our son’s remarkable brain – he never ceases to surprise and amaze us. An unexpected benefit of being a mom is how parenthood has helped my husband and I learn how to be a true team. Our marriage and our partnership have been strengthened by the unique joys and challenges of raising a unique child.
Know a cool mom in the Triangle we should profile for our next "Meet" Q&A? Or are you a mom with a story to tell? Send us an email at firstname.lastname@example.org.