When Caryn Daher’s son, Jon, was little, he was into everything — even more than the average toddler.
“He was… constantly bumping and crashing into things and people and seeking-jumping type activities,” said Daher, a Cicero resident. “He had difficulty in regulating and responding to movement activities appropriately. It went far beyond a ‘busy’ toddler.”
In addition, Jon struggled with a variety of sounds, often withdrawing or avoiding certain situations because of the noise level. He had higher-than-average sensitivities to food, temperature and touch. In addition, his speech was delayed. It was that delay that led to help for his other issues. Through his speech therapist, Jon was diagnosed with Sensory Processing Disorder.
Sensory Processing Disorder (SPD) is a neurological disorder in which the sufferer has difficulties with taking in, processing and responding to information received by the senses.
“Kids with sensory difficulties process this information in a different way than most other people,” Daher said. “These issues can cause extreme sensitivities that can impact doing everyday life activities and can cause reactions which include extreme withdrawal and avoidance, distress, fear, anxiety and confusion. Organization and planning can be effected and often, these kids have trouble with both fine and gross motor skills. With many children, their sensitivities are a ‘mixed bag’ where they are very over-responsive to some types of stimuli and under-responsive to others. Emotionally, this is very trying for a kid to handle. The behaviors and reactions associated with this disorder go far beyond what is considered typical.”
SPD is not recognized in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the Bible of sorts for all mental, psychiatric and developmental disorders. Daher says that’s a major oversight.
“This manual consists of the criteria how doctors use to diagnose and how services are recommended,” she said. “The recognition of SPD is critically important to ensure that children receive the services they desperately need.”
Despite the absence official recognition for his disorder, the Dahers were able to find help for Jon to respond better to his environment. Thanks to his speech therapist, the family enrolled Jon in occupational therapy. The OT helped him to better regulate his body so that he could avoid being overstimulated, or bring himself down if he did become overstimulated. He was able to participate in quiet activities, and, thanks to speech therapy, he could articulate when he needed a change.
“As a family, we became immersed in his therapies and in learning ways to assist him while teaching him how to manage his difficulties on his own,” Daher said. “Both OT and speech helped immensely with his issues with food, temperature and touch. Soon he could actually eat warm food of different textures and was willing to try more varieties. As well, we were finally able to get him to take a warm bath (instead of a cold one!) and he began to play with play dough and finger-paint and all the other things kids his age were playing with but which he had not been able to tolerate until his therapists got him there.”
In an effort to help parents like her struggling to understand their children’s diagnosis, Daher, along with another parent, started CNY SPD Parent-Connections in January of 2009.
“We had been both been looking for a support group that focused on sensory processing issues, but there was not one available,” Daher said. “We founded this group through the SPD Foundation out of Colorado.”
Now, Daher runs the group by herself.
“I continue to do this because I want to be able to help other parents who need the support,” she said, “and because this group still provides me with a great source of support.”
The group holds parents-only support meetings every month in which parents — who don’t have to sign up as members to attend, nor do they need to have a specific diagnosis for their children — can ask questions, tell their stories and gather information. The meetings often feature a guest speaker that focuses on a particular topic relating to SPD. While the focus is on sensory processing delays, families affected by any disorder are welcome.
“Our meetings are always a source of new ideas for parents,” Daher said. “The best way to learn is from other parents who are going through similar challenges.”
The next parent meeting is at 7 p.m. Thursday, Feb. 28, at the Beacon Baptist Church, Route 31, Clay. Mike Mazzaroppi, an education advocate from ARISE, will present.
In addition to the parent meetings, CNY SPD Parent-Connections also hosts a monthly event at the Museum of Science and Technology (The MOST) in Armory Square. Sensory Friendly Time is designed for any children with processing difficulties, whether they have an official diagnosis or not. The MOST will adjust its exhibits so that, for example, loud noises are lowered, flashing lights are eliminated and air compressors are silenced. Quiet areas are offered for kids to relax, as are peanut- and gluten-free areas, since children with SPD are more prone to food allergies. The MOST also offers planetarium shows throughout the evenings, which are generally offered on Saturdays. The next Sensory Friendly Time will take place from 5:30 to 7:30 p.m. Saturday, March 16. Visit most.org for ticket prices.
“This event came about when a parent, familiar with our group, approached the MOST about creating a Sensory Friendly time at the museum,” Daher said. “The event is extremely well-attended and has made a tremendous difference to a lot of families out there. My son, in particular, had great difficulty visiting the MOST, because of all the noises, especially in the playhouse. Now when we go to Sensory Friendly Time, he never wants to leave.”
As for Jon Daher, he still struggles occasionally, generally in response to anxiety.
“A problem on the bus or with a student in class or a friend on the playground can cause a variety of things,” Caryn Daher said. “We had a few weeks last year when he suddenly had a problem with wearing shoes and socks. This was a completely new sensory issue. We eventually found out there was a problem on the bus. Once the problem was resolved, socks and shoes were okay again as the source of his anxiety was eliminated. As he gets older, we continue to work with him on how to talk these things out, and we have seen much improvement.”
Daher said the group has helped her to help her son, and it does the same for the numerous parents who have been a part of it.
“Parents are the best advocates for their children,” she said. “As a mother, it is very difficult to go through this whole process with your child. But the more knowledge we have, the better we can help our children through.”
For more information on the group or to volunteer, call Daher at 247-4195, email her at firstname.lastname@example.org or visit cnyspdparents.com.
Sarah Hall is the editor of the Eagle Star-Review and the Baldwinsville Messenger. The 2012 winner of the Syracuse Press Club's Selwyn Kershaw Professional Standards Award, she has been with Eagle Newspapers since 2006. She is a Liverpool native.