By Sally Absher
On Sunday, January 18, the East TN Autism & Special Needs Support for Families held their inaugural meeting in Knoxville. Facilitator April Roga organized what she thought would be a one to two hour “town hall” for families with children who have special needs to meet and share experiences and resources. The meeting lasted four hours, and included participants from Knox, Roane, and Claiborne Counties.
Roga describes herself as “still a work in progress,” being somewhat new to the world of special education and parenting a special needs child. Her son Morgan is 4 years old, diagnosed with non-verbal autism. He attends special education pre-school in Knox County.
Roga and her husband Scott Houston didn’t have an easy road to parenthood. There was a chance she wouldn’t be able to conceive, so they were thrilled several years ago when an at-home pregnancy test and visit to the doctor confirmed that she was pregnant. And in May 2010, she gave birth to a beautiful baby boy. “He had ten fingers and ten toes. He was perfect,” she recalls.
But soon, she and Scott noticed things that didn’t seem right. “He slept all day and was up all night crying. Touching or cuddling him to calm him only seemed to agitate him and make him cry harder and longer. Being a first-time mom, I didn’t think much of this except that I was frustrated…Nothing I did would calm him except rocking, and that only worked sometimes.”
As he grew older, his parents began noticing developmental delays. After multiple assessments during and between well visits, they were referred to Tennessee Early Intervention System (TEIS), a state-funded early intervention program. Children are enrolled in the program if they are under age 3 and meet the designated criteria for developmental delays.
Roga said, “Our son was just barely walking and pulling himself up at 21 months old and he was not speaking at all, so he definitely qualified for the program. He began receiving OT (occupational therapy), PT (physical therapy), speech therapy and an in-home early interventionist who worked with him on a combination of all three.”
As Morgan approached age 3, he was evaluated by a behavioral psychologist to receive a formal diagnosis that would follow him into the public school system. Roga said that after several visits that encompassed surveys, evaluations and lots of paperwork, it came.
She recalls, “All I can remember hearing was: 1) Your son is on the autism spectrum, and 2) your son’s developmental age is 4 months.”
She adds, “I’m not sure which of those two statements was more difficult to hear in that moment — to be told that your almost 3-year-old child is functioning developmentally as a 4-month-old is devastating…He may as well have driven a knife through our hearts because that’s how we felt when we heard our child had autism. Denial, yep, we were right there.”
April and Scott are doing their best to navigate the convoluted path of Special Education in Knox County. In some ways they are fortunate – Kim Kredich blazed the trail for inclusion, with accommodations and modifications, for her son Ben, who has autism. Roga says, “At this point, my son is so far behind developmentally that sometimes I feel hopeless. However, after I get a chance to speak with Kim one on one, I may learn that we do have options for our son.”
But a support group for families of special needs children is desperately needed. Kredich is becoming overwhelmed with the advocacy requests she receives. Hopefully, as families get the support, services and inclusion they need for their own children, they will be able to advocate and help others. Convincing the school system that the federal IDEA law requires that the general education environment – with a full range of supports, services, modifications, and accommodations – is the first placement that an IEP team must consider is the biggest challenge.
Roga told The Focus, “I wish that I didn’t have to research laws, search the internet, plead to the Board of Education, and write State Representatives to get my child the proper education that he needs. I am a special needs parent working a very stressful full time job. I don’t have enough hours in my day to get the answers I need in order to ensure that my son gets the same access to education as typically developing kids.”
She adds, “When you speak from your heart as a parent, and you ask for support for your child, everything gets questioned. Sometimes requests are flat-out denied, and you feel like you have no recourse to fight back. If you don’t know the options that are available to you and you don’t know the laws, you are at a huge disadvantage.”
East TN Autism & Special Needs Support for Families has a Facebook group page. It is a closed group to protect the privacy of members, but if you are interested in learning more you may contact the group’s administrator at email@example.com. The group supports ALL special needs, not just autism.