Lucy Rauh laughs during a photo shoot. The Oswego youth, born with Down’s syndrome, had to wait well beyond the state-mandated 45 days for therapeutic services. (Provided photos)

Third in a series looking at Early Intervention funding in the state

Sam Rauh remembers the fear she felt when her daughter didn’t cry at birth.

“I asked, ‘Why can’t I hear her?’” she recalled.

The Oswego resident called to her husband, who confirmed the baby was alive.

“They rolled her past us. It didn’t look good,” Rauh said of her baby being intubated and taken to the Natal Intensive Care Unit.

Lucy

It was 12 or 13 hours later before Rauh was able to meet her daughter.

“We couldn’t even get to her. She was hooked up to so many machines,” the new mom said.

Fast forward 15 months and her daughter, Lucy, who was born with Down’s syndrome, is a happy, smiley baby.

“Mama, baba means ‘Feed me.’ She always wants snuggles,” Rauh said. “The new biggest fascination for her is clapping. She loves music. If you didn’t know her story, you would have no idea that she had such a difficult beginning.”

The Rauhs had to wait a few months for Lucy’s Early Intervention therapy services to begin.

“There is a backlog. So many kids need Early Intervention services and there is a shortage of therapists,” Rauh said. “At least in my experience, there is a shortage because they are not paid a livable wage. These are people who have doctorates.”

With lawmakers still hammering out state budget details, Early Intervention proponents were still hoping for a $40 million budget increase for fiscal year 2025 to address the EI workforce crisis and the services wait lists.

Gov. J.B. Pritzker had proposed a $6 million boost for EI services in next year’s budget. State lawmakers allocated $156 million for Early Intervention services in the current budget.

Rauh said the therapists who work with Lucy have become family to her.

“It’s weird that they still ring the bell,” she said. “I told one the other day, ‘Just come in. Stop ringing the bell. Just walk in my house.’”

She said the amount of love and encouragement the therapists give Lucy is astounding.

“Anytime Lucy does something that they have been working on, there are pictures and videos to the group chat,” Rauh said. “They get so excited. It is really great.”

Rauh said friends of theirs have not had as positive an experience, noting their child was denied in-home services because of not being delayed enough. The family must drive to the hospital where the child was born for therapy services.

“It goes back to the lack of therapists,” Rauh said.

Alec

Carolyn Sherwood appreciates that Early Intervention services have allowed her family to leave the house.

“Now, leaving the house is easier because Early Intervention has given us the tools to keep our son more regulated and that has made us all happier,” Sherwood said.

“We are now talking about if he could acclimate to regular kindergarten without all the extra help,” she

Alec Sherwood was diagnosed as needing speech, developmental and occupational therapies. Therapy has made it possible for his Lake County family to leave their home because Early Intervention services have given the family tools to keep him more regulated, his mom, Carolyn Sherwood said.

added. “Early Intervention has helped us cope. We can go to restaurants. We can leave the house.”

Her son, Alec, 2, was diagnosed as needing occupational, speech and developmental therapies. However, instead of getting started with therapeutic services 45 days after diagnosis as state law requires, the Lake County family waited months for services to begin.

Getting youths started in Early Intervention services is critical, Sherwood noted.

“I didn’t know what the next steps were,” she said. “I knew my son needed help. I knew my son needed Early Intervention services.”

Sherwood said that Alec jumps up and down now when one of his therapists comes to the door.

She said she doesn’t want to have to find new therapists for her son.

“The thought of going elsewhere because the people in these jobs are not getting the pay they deserve breaks my heart,” Sherwood said. “I can’t tell you how much these therapists mean to us. To go other places would be heartbreaking.”

She said being able to have Alec’s therapy sessions at home is more productive because he is able to calm down faster and get started with therapy.

Sherwood said she would be happy to talk with state lawmakers about the need for more Early Intervention funding.

Karen Berman, senior director of Illinois policy at Start Early, a Chicago-based nonprofit public-private partnership advancing early learning and care, said that letting lawmakers know about the wait lists is key.

“One of the tensions many families feel is sitting on a waiting list and not knowing what their rights are,” Berman said. “We have to tell lawmakers about the situation. Once they learn about the situation, they see that there are thousands on waiting lists.”

Sherwood said progress has occurred much faster with Alec thanks to the work of therapists.

“I know we would have gotten there, but holding hands through a story, getting off the bottle, sleeping through the night, sleeping in a crib. These are all big changes that therapists helped achieve.

“You celebrate the small victories when you see the differences.”

Ezra

Krista Riber’s son, Ezra, has started feeding therapy via private insurance.

Ezra Riber, who is receiving five Early Intervention therapies and on a wait list for two more, sits next to an inclusion book in his East Peoria home.

Her son is receiving five Early Intervention therapies and has been on wait lists for a long time for speech and feeding therapies.

“It is super frustrating,” Riber aid. “I am an over-researcher mother anyway. I watch a lot of Tik Tok and YouTube videos. The information shows that therapy works. Speech therapy is the most frustrating. He has a lot to say and is not able to say it.”

Her 19-month-old son, Ezra, is one of the lucky ones, Riber said. She said she knows of plenty of families that are waiting for services.

“Our area is bad for wait lists,” said the East Peoria mom. “We got lucky with Erza’s physical therapy. Two weeks after he was put on a wait list, he started therapy. I know people waiting. There is a shortage of providers who are looking for financial security more and more.”

Riber said lawmakers need to put faces with the dollars they are considering for Early Intervention.

“It’s easy to look at money on the page one way or another, but those numbers when it comes to Early Intervention are babies and toddlers,” Riber said. “Lawmakers need to think those kids they pass in the grocery store could be individuals that their kids and grandkids play with.

“We are not asking for special treatment. We are just asking to set them up for success. Some kids need more help in the beginning of their lives. It is obvious that EI works to fill in gaps in the system. If these were lawmakers’ children or grandchildren, it would be an easy decision.

“This is a really important thing to me. Early Intervention is not important until you need it, until you are forced to use it. I have had multiple friends use EI services, they work. Our kids just need a little assistance.”

 kbeese@chronicleillinois.com