Kelly O’Toole’s three-year-old son Vinny
Maybe it’s the rumbling noise the grocery cart makes as it rolls down an aisle. For others, it could be the bright lights in the store, or perhaps the sound of people talking all at once at the check-out counter.
Whatever the trigger, a meltdown just may occur — a young toddler screaming on the floor at the store. For those around them, accusatory looks at the parents reflect judgment over poor parenting. For parents of autistic children, however, the meltdown is not a temper tantrum, as most assume.
“A meltdown is not behaviorally motivated, as a tantrum is. It’s what happens when an autistic child is completely overwhelmed by their situation and temporarily loses control of their emotions. Yes, they may be screaming, crying or kicking, but they are doing that because of underlying issues within them that often bubble to the surface in response to the sensory world around them,” said Kelly O’Toole, parent of a three-year-old son with autism. “It’s that child’s uncontrollable response. He’s trying to communicate something. But people in that situation assume it’s a behavioral issue and they judge you. My son looks like a normal child on the outside, but he has many autistic tendencies that prevent him from reacting to situations in a more normal way.”
Before being diagnosed shortly after his first birthday, O’Toole knew something was off. Her son, Vinny, would not look at her when she called his name. He was nonverbal. He couldn’t follow when she pointed to something. After expressing her concern with a friend at work, the co-worker suggested she connect with the Early Development Network (EDN) because she knew they provided support and resources to families and children within the school district.
Vinny
ESU #3, which is the largest Educational Service Unit in Nebraska, serves four counties, 18 school districts, more than 5,000 educators and 85,000 students. ESU #3’s Early Development Network evaluates children from birth to three and provides early intervention services for those with health care needs or delays in development, and connect their families to services through their local school district. All for free.
For O’Toole it’s been a lifesaver.
Within a few days of completing the online EDN form, a service coordinator reached out to get the ball rolling and started the intake process with Vinny.
“It was amazing,” O’Toole said. “I was so nervous at first. While I had yet to overcome the thought of something being different with my son — yes, I was in denial at first — I had overcome my emotions and knew I needed to get help as soon as possible. It was the best call I ever made.”
Since his enrollment in the program, Vinny has had monthly in-home visits with play skills, speech, and sensory therapists who have provided both him and his mom with tools and resources to navigate the world around him. Because he is still non-verbal, visual boards, for example, have been incredibly helpful to help cue up activities he is about to undertake, such as bathing, picking up toys and eating.
“The testing reflected that Vinny is a visual learner,” O’Toole said, “so the visual boards help him understand more of what is going to happen and what is expected. At first, he fought it, didn’t want anyone in our house, anyone working with him. But over time, he has made an incredible and loving connection with his therapists. Now, he hugs them when they arrive and is disappointed when they have to leave.”
Vinny
O’Toole said these same therapists will continue working with Vinny when he begins preschool in the fall. At that point, the services will be rendered onsite at the school.
“Not only has this program helped Vinny tremendously, it has really helped me just as much,” she said. “The wealth of knowledge, services and resources the Early Development Network has provided me is unbelievable. I’ve never felt any question I had couldn’t be answered. Our therapists are always available to respond and have served as a sounding board with loads of encouragement. They have helped me overcome my insecurities in raising a child with autism. If I hadn’t made that call two years ago, we definitely would not be where we are today in terms of Vinny’s progress.”
O’Toole recommends all parents with any concerns about their child whatsoever should call the EDN for a free, stress-free evaluation, even if it’s just to see where their child is at developmentally. The evaluation helps parents and professionals determine how a child compares with the development of most children their age. If services are not recommended, that’s it. If there is a need for support, the EDN has a lot to offer the child and their family.
Oh, and if a child happens to throw a fit at the store, O’Toole suggests that onlookers please give space and refrain from judgment. There’s usually more involved than what meets the eye.
For more information on the Early Development Network's services and resources, or to schedule a free evaluation, please visit omahaedn.esu3.org or call 402-471-2471 (toll-free 888-806-6287).
