Family faced with impossible choice in helping 10-year-old with autism, self-harming

PEORIA (25News Now) - Carol Goodwin knows her grandson’s every move. She can describe how he waves one hand in the air, and how he likes toys and sensory objects that make clicking or tapping sounds.

As the grandmother of seven, she loves all her grandkids, dropping what she’s doing at a moment’s notice to get them from school, or making sure to attend their sports events and track meets. Her youngest, 10-year-old Connor is a top concern at the moment.

Connor is autistic. For most of his life, it was managed. He currently attends Hammitt Elementary in Normal, a specialized school where he is in a class of three students with four teachers. Goodwin said he was making great strides in communicating, like learning to use a tablet to select words.

Within the past six months, he suddenly declined. Connor began self-harming, banging his head, scratching at his face, and picking at his cuticles. They don’t have a clear reason why he’s doing that, but they’ve seen it get worse. He also lost the ability to feed himself.

The family had to put some of his favorite activities on pause, like making trips to Bloomington’s Harmony Park.

“The school called 911 because he had beat himself up on the school bus,” Goodwin said. “He had clawed his face and he was all swelled up.”

Goodwin and Connor’s mother have nearly a full-time job taking care of Connor, especially with his developing condition. Connor’s mom also works full-time. They spent countless hours calling insurance, state and county agencies, and any group or doctor they can find to try and find out what was happening.

Everywhere they turn was some sort of roadblock. Either facilities were full or Connor didn’t fit the criteria to receive care. they had trouble with his public insurance to get his medication adjusted. Goodwin said Hammitt has been helpful and takes good care of Connor, but if his harming tendencies don’t improve by the end of the school year, he may get sent to the public school system.

Eventually, they exhausted most of the local resources, and even some on a state level like DCFS.

“They tell me we’ve already exhausted all the resources that we have for you,” Goodwin said. DCFS suggested she either report her daughter to get her investigated by the agency or give Connor up as a ward of the state.

“Well I don’t think that should be an option at all,” Goodwin said. It is possible to regain custody of a child once they are released into state care, but it can be a long process.

“The quickest route to access services is you say you no longer want to keep your child, and then they become destitute and they become homeless and the state will intervene,” Chuck Hartseil said. Hartseil has worked in special education for decades. He now works as a semi-retired consultant on special needs and is the treasurer of Autism McLean.

Previous underfunding of social services during the Illinois budget impasse means there often aren’t the right resources to help someone in Connor’s condition.

Self-harming patients usually don’t qualify for care because of the risks of hurting themselves and others. Hartseil said some Bloomington-Normal area hospitals and McLean County are starting to address this side of care for special needs individuals, but it’s in the early stages.

Hartseil agreed this tough side of care isn’t in the public conversation. Caretakers don’t want to feel like failures for their loved ones hurting themselves. Plus, solutions are readily available to stop the behavior.

For now, the Goodwin family is stuck with short-term remedies. They put gloves on Connor’s hands to stop him from picking his cuticles or flicking his face and he wears a helmet to protect his head. Goodwin said it’s hard to watch and not be able to fix things for him.

“Most Autistic children won’t look you square in the eye for more than a second,” Goodwin said. “He’s been staring me straight in the eye and literally crying... and I don’t know what he’s saying. That hurts me more than anything else, Grandma can’t fix it.”

Copyright 2023 WEEK. All rights reserved.