Missouri Department of Elementary and Secondary Education

A year ago, Sheila and Joe Gassner were expecting their fourth child when an ultrasound showed something was wrong. They were told their baby had a one-in-three chance of having Down Syndrome.

The Jefferson City couple were sent to Columbia for more tests and decided to have an amniocentesis. "We wanted to find out for sure, so we could be mentally prepared when he was born," Sheila said. Waiting for the test result was like an emotional roller coaster. "The doctor had said he already knew that the baby was going to need surgery the day after he was born. At that point I was praying ‘whatever is God’s will,’ " Sheila said.

The test was positive.

Baby Jacob arrived on Nov. 17, 2001, five weeks early. He had intestinal surgery right away and was in the hospital for three weeks.

Then the Gassners were dealt another major blow.

A test administered in the hospital showed Jacob had a severe hearing loss.

The Gassners knew they and Jacob faced another big hurdle.

Getting Started in First Steps

While Jacob was in the hospital, a social worker visited the couple. The social worker explained Missouri’s First Steps program and enrolled the couple in the system. A service coordinator was assigned to the family to develop an Individualized Family Service Plan to access Jacob’s needs.

"It’s very tough to find out you have a child with special needs," Sheila said.    

"They [First Steps providers] have been so helpful and understanding. They’re a great group of people who just care so much. They keep on guiding us."

DESE is the lead agency for First Steps, the state’s early intervention system for infants and toddlers with special needs. Other agencies involved in the program are Health and Senior Services, Mental Health and Social Services. First Steps is supported by federal and state funds from the four agencies and by other local and private agencies throughout Missouri.

Children who are eligible for First Steps services include those who have genetic or chromosomal abnormalities such as Down Syndrome and those with medical conditions associated with developmental disabilities such as spina bifada, autism, and hearing and vision impairments. Children with a 50 percent developmental delay and newborns with very low birth weight combined with another medical condition also qualify for First Steps.

The Gassners were referred to First Steps by hospital staff. Doctors and the Parents as Teachers and Head Start programs also make referrals.

First Steps providers work with Missouri parents of children birth to age 3 by ensuring that coordinated services are provided as conveniently as possible.

"What I really like about the whole program is that they contact you, and they come to your home," Sheila said. "It’s not like how it is when you go to the doctor. You have to take Jacob to everybody else, but with this they come to see you."

"The best part of the First Steps program is how much it helps families. It’s just a relief to know that this service is here." 
-- Sheila Gassner

Early Intervention

The Gassners’ service coordinator, Cindy, visits the family routinely to see how everything is going. She introduced the family to the director of the local Special Learning Center, a private school in Jefferson City that is a provider in the system. The director of the center assigned a physical therapist to Jacob, and he began physical therapy when he was two-months-old.

The physical therapist has gone to the Gassners’ home to teach the family exercises that they can do with Jacob to help him develop physically and mentally. Because Jacob spends a lot of time at the babysitter’s, which is Sheila’s mom, the physical therapist also has visited the grandmother to teach her the exercises. Children with Down Syndrome typically have low muscle tone, Sheila said.

"Research shows that the earlier that you can help Down children, the better they will do," Sheila said. "We’re just going to try to give him all the advantages to be stimulated mentally and challenged physically," Joe added.

Just keeping up with Jacob’s medical needs alone has been difficult as he has five different doctors.

Jacob’s hearing aids cost nearly $5,000, for example. Fortunately, audiology equipment is covered through First Steps. "It’s a wonderful service," Sheila said. "You just have to have faith, and we are glad that technology is where it is."

Jacob had heart surgery when he was almost four-months-old. While Jacob was sedated during heart surgery, the doctor also put ventilation tubes in Jacob’s ears, because Down children are susceptible to ear infections.

Jacob began speech therapy at five months. The speech therapist taught the family basic signs to teach Jacob such as mother, father, bottle, bedtime, etc.

Jacob had follow-up intestinal surgery in June. He is scheduled to have his third and final intestinal surgery in October. He has recovered well from his surgeries.

"The best part of the First Steps program is how much it helps families," Sheila said. The family’s service coordinator has helped fill out paperwork, taken care of bills and coordinated services. "It’s nice to have one contact person.

"It’s just a relief to know that this service is here. We don’t have to worry about that at night when we go to bed. Cindy is just a phone call away if we ever have a concern."

When Jacob is 2½-years-old, their service coordinator will discuss his schooling and develop a transition plan for when he turns 3 and is no longer eligible for the program.

The Gassners have three other children: Cory, 14; Michelle, 12; and Melissa, 10. "It’s a blessing to have three older children that can help take care of Jacob and stimulate him," Sheila said.

"You never know what road God is going to move you down, and you just go the best you can. We love him, and we just know he’s a special gift from God."