The Triangle Run/Walk for Autism: Because Experience Makes a “World of Difference”

Lorraine and Adam (2)

Lorraine La Pointe moved to North Carolina because of a brief encounter with a respite worker.

It was the early 1990s, and La Pointe was living in Florida with her toddler son, who had autism. She was having trouble getting services for Adam, who was nonverbal until the age of 3. La Pointe came to North Carolina for a conference about autism, and while she attended sessions, Adam was cared for by respite workers through the Autism Society of North Carolina. When she came to pick him up, she was given a sheet detailing the snacks he had eaten and the activities he had done. And then a worker handed her a plastic bag containing Adam’s underwear, saying he had had an accident, but assuring her that it had not been a problem. “That to me was a world of difference,” La Pointe said. “It was such a little deal to them.”

La Pointe, a pediatric nurse, decided to find a job in North Carolina and move there, and says she has never regretted it. Her first impression of the Autism Society of North Carolina has held up over the years as the nonprofit has provided respite with experienced workers. Not having to explain everything about autism and then Adam’s own idiosyncrasies was a great relief, La Pointe said. “You don’t have to go through those hoops,” she said.

Adam Ricci is now 23 and lives in a group home in Carrboro. He has three part-time jobs – thanks to vocational support from ASNC – he volunteers, and he participates in leisure and church activities. “He’s got a more full life than I ever would have expected,” La Pointe said.

None of it would have been possible without the support they received from ASNC, La Pointe said. So on Oct. 12, they will be sure to be part of the nonprofit’s Triangle Run/Walk for Autism fundraiser, just like every other year. “It all goes to a place that supports our kids the best,” she said. Last year, more than 3,200 people participated in the downtown Raleigh event, which starts with a 5K race that is part of the Second Empire Grand Prix Series and also includes a noncompetitive 5K, a 1-mile fun walk, a kids’ dash, a fun zone, refreshments, and music. Vendor space will showcase local support resources, service providers, and other businesses.

In 2012, the Triangle Run/Walk for Autism raised a record $310,000. La Pointe knows the organization helps families across the state that often have nowhere else to turn. “The Autism Society has always been there for everybody regardless of how much they can pay.”

Ricci and La Pointe are also big fans of ASNC’s Camp Royall in Pittsboro. Ricci has attended the summer camp for those with autism more than a dozen times over the years, and each time he goes back, “it’s like he’s the mayor,” going around greeting everyone, his mother said. Camp Royall is a special place, La Pointe said: “Where else do adults get to go to camp?” She volunteers there often, and says everyone is always so excited to see her. “It does the soul good.”

Taking advantage of camp and other opportunities from the Autism Society of North Carolina over the years has also helped La Pointe find other parents who understood the challenges she faced. “It really makes a difference, having people who get it and don’t even bat an eye,” she said.

So on Oct. 12, La Pointe will be walking alongside those families, in support of the Autism Society of North Carolina, which supports them all. “I really don’t think you ever see a tighter family than the autism community.”

♦ ♦ ♦

The Autism Society of North Carolina will hold its 15th annual Triangle Run/Walk for Autism in downtown Raleigh’s Moore Square from 9 a.m. to noon on Saturday, Oct. 12. The event includes a 5K race, which is part of the Second Empire Grand-Prix Series and is USATF-certified; a 5K noncompetitive run; a recreational 1K run/walk; and a kids’ dash. It will also feature a family-friendly festival with a fun zone, refreshments, and vendor space where businesses, service providers, local support resources, and sponsors will be showcased.

Visit www.trianglerunwalkforautism.org or call 800-442-2762 to register, join a team, form a team, sponsor, donate, or volunteer. For more information about the Autism Society of North Carolina, visit www.autismsociety-nc.org.

The Greensboro Run/Walk for Autism: Teaching Compassion

Mccraw Family Walk 2012

Robin McCraw is a teacher, so she knows all about inspiring the next generation. What she sees each year at the Greensboro Run/Walk for Autism thrills her: enthusiastic teams of young people from schools such as UNC-Greensboro and High Point University, representing their service clubs and athletic teams.

“They’re learning to be compassionate and to care about people with autism,” McCraw said.

McCraw has a son with autism herself, and she said the support from other runners and walkers and from companies who set up booths at the event is truly appreciated. “It’s really good to see other people who don’t have kids with autism come and participate.”

The Greensboro mom and her family have walked every year in the event, which raises money for the Autism Society of North Carolina (ASNC) as well as awareness. The fifth annual Greensboro Run/Walk for Autism is set for Sept. 28 on the campus of UNC-Greensboro.

McCraw said she “can’t imagine” not supporting ASNC, which she has been involved with since her son was about 2½. At that point, Evan was not diagnosed yet, but his parents thought he probably had autism. Medical issues complicated his diagnosis, and the family was told to wait and see how he developed.

As a young child, Evan had an extensive vocabulary but did not truly communicate with others, his mother said. He mostly quoted books that he had memorized and did not respond to questions or communicate his needs. “It was like the words were just these cool things that were on the page,” she said.

ASNC connected the family to resources, including a parent mentor, McCraw said. “That was really wonderful having someone who had kind of been there.”

As Evan grew, he developed more health problems, and his pediatrician even turned to the Autism Society of North Carolina for medical information about conditions that occur in conjunction with autism. McCraw said ASNC’s years of experience in working with individuals with autism is invaluable.

Evan, who was diagnosed just before he turned 4, is now 16 and a student at Grimsley High School in Greensboro. He is taking the occupational course of study and receives modifications because it can take him a long time to complete tasks. He is also in ROTC and has a group of good friends, but “he has a hard time connecting with people in a way that people expect,” his mother said.

Over the years, the Autism Society of North Carolina has been there for Evan and her whole family, McCraw said. They have been part of the local ASNC chapter and made many friends; one group of moms even takes trips together.

“It’s just a wonderful community to be a part of,” she said. The parents can share their struggles and successes, and at events, they get to see how each other’s children have grown. For Evan’s older sister, Hayley, the group was a place to bond with other siblings of children with autism.

ASNC has provided another source of support, McCraw said, with its parent advocates, who are always available to talk through issues or connect families to resources. Evan himself greatly benefitted from attending ASNC’s Camp Royall, which is the largest summer camp program specifically for people on the autism spectrum in the nation.

McCraw said all of these efforts make all the difference for those with autism and their families, and that’s why the Sept. 28 fundraiser is so important. “A lot of these kids and adults have wonderful abilities. They can contribute to society, you just need to give them the right support. My son has gone well beyond what they said he could do when he was 3.”

♦ ♦ ♦

The Autism Society of North Carolina will hold its 5th annual Greensboro Run/Walk for Autism at UNC-Greensboro beginning at 9 a.m. Saturday, Sept. 28. The 5K event will also feature refreshments and vendor space where businesses, service providers, local support resources, and sponsors will be showcased.

Visit http://www.greensbororunwalkforautism.org or call 336-333-0197 to register, join a team, form a team, sponsor, donate, or volunteer. For more information about the Autism Society of North Carolina, visit http://www.autismsociety-nc.org.

A Parent’s Perspective – By Kathleen Dolbee

Editor’s Note – This article is from Kathleen Dolbee, a parent, educator, and ASNC Parent Advocate/Trainer. Kathleen can be reached by email at kdolbee@autismsociety-nc.org.

Last year I attended a conference at Western Carolina University, a small conference, more like a class. At the request of the professors presenting, before beginning we took turns introducing ourselves and explaining briefly why we were there. Most of those attending were professionals, but a handful of parents attended also. As often happens, I fit into both categories. But right from the start the difference between those two perspectives was apparent, at least to me, and it reinforced in my mind the fact that I am and always will be, first and foremost, a parent. Let me explain.

Because professionals endeavor to be objective and are required to protect the confidentiality of their “client” or “consumer”, specific names are never mentioned. Not so with parents! Our children were the reason we were there in the first place and they had names, names we mentioned when introducing ourselves, names we gave them the day they were born. No claim or pretense of objectivity with parents, everything is personal.

The instructors were excellent, and there was no doubt that they were experts in their field. However, more than once it seemed clear to me that they did not “get it,” but in fairness, how could they? When one parent expressed concern about a safety issue, one instructor commented in an off-handed manner that all of us engaged in behavior that was somewhat risky when we were young and doing so is a normal part of life. I wanted to raise my hand and ask him to define “normal”, but I didn’t. Clearly, he viewed the parent as overprotective. He explained that growing up is dangerous for all kids; “Get over it”, he said. I wanted to scream, “You have no idea what I have already had to get over!” but I didn’t. Over the years I have learned that it is better to keep my mouth shut when my heart, rather than my brain, is doing the talking. Please understand, I am not disagreeing with the expert, only wishing he had better empathy skills, wishing he could understand the viewpoint of a parent whose child struggles with challenges day in and day out and does not need to learn any more lessons the hard way.

During the lunch break, I enjoyed listening as mothers exchanged funny stories that only another parent would laugh at. It is a different kind of sorority, I think, sisters because we met while traveling the same road. There is no need for a secret handshake or a membership card. We know who we are. We recognize each other by the expressions on our faces, like looking in a mirror.

So here’s to us! Whether you are still reeling from the blow of a new diagnosis and you are wondering if you will ever laugh again, we’ve been there. If you are fighting the fatigue felt by parents trying to supervise an impulsive child who never sleeps, we understand. If you’re trying to be strong, patient and logical, but your nerves are stretched to the limit, or your back to school optimism is being quickly replaced by panic, join the crowd. If you need to share your concerns, not because you expect quick answers, but because you need someone to validate your struggle and praise your efforts, give me a call.

For a complete list of Autism Society of North Carolina Parent Advocate/Trainers, please click here.

Follow

Get every new post delivered to your Inbox.

Join 3,771 other followers