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FICC: Collaboratively Serving Young Children and Their Families

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Steven's Story

Steven in a fedora hat

As a newborn, Steven was fine and we were so happy to have him. As he got closer to a year old, we were experiencing some problems with his crying and we were having a hard time getting him to sleep. We thought he was as colicky baby!

By the time he was two, Steven was walking and growing and babbling, but his language skills were not progressing. We began to get concerned but Steven's doctor repeatedly told us that boys are slow talkers and he's doing fine otherwise; so everything must be OK. The pediatrician also speculated that we weren't talking to him enough.


The pediatrician advised us to enroll Steven in a preschool program to encourage socialization and peer interaction. Meanwhile, we were still having problems with his sleeping patterns. At 3 ½, when he finally began sleeping normally through the night, we enrolled him in preschool. He lasted 20 minutes on the first day. His teacher told us that he was crying, hitting, and attempted to bite her. We took him home and decided that we would try preschool again a few months later.

We found a great developmental preschool in our area. Steven's teacher was a wonderful and caring professional. The preschool director took special interest in our difficulties with Steven and recommended that we get an assessment of Steven's language skills. We told her about the conversations we had previously had with doctors, but with her support we approached the doctor once again and insisted that some screening be done.

After a series of screening tests, we were told that Steven was speech delayed. He had the speech and language of an 18 month old. We had a lot of work to do. We enrolled him in a speech and language clinical school using our private health insurance. There he made terrific progress and at age 5 he said "mommy" for the first time. That was an exciting milestone.

Referral for Special Education Services

Unfortunately, we had never received a referral to early intervention services or to our local coordinating agency. Finally when Steven was approaching his 5th birthday, his teacher suggested we contact our local school district and have some cognitive testing done. While beginning the IEP process, we also wanted to ensure his continued progress and level of appropriate services available at the clinical school. Services were no longer covered by our health insurance, so we made the necessary sacrifices and elected to keep him there. He ultimately remained at the private clinical school throughout kindergarten.

Through the IEP process, Steven didn't receive the language intensive program that his needs required. We didn't feel like we had any other option, so we filed due process. After a lot of work and with lots of support, Steven received an appropriate placement and services and the school district reimbursed us for our out-of-pocket tuition expenses. The due process procedure put us in contact with many supportive individuals and activated many valuable resources. We learned more about our son through the many assessments that were required to better help us understand his needs. Through these assessments Steven was finally given a meaningful diagnosis at age 5 ½. It was then that we first became acquainted with the word autism and all that the diagnosis entails.

It's About Relationshipssupport structure of professionals

Over many years, we have developed some wonderful relationships with many caring professionals, including doctors, therapists, educators, and our special education attorney. Some of these people have been life-changing influences on Steven's life and our entire family. This is where most of our success with Steven has come from. We feel lucky for the perspective we have gained and are gratified to be able to see Steven's positive growth. Currently, as the director of a local state funded family support agency, I continue to rely heavily on the relationships our family established for Steven with in my work with other families.

We have also seen some real systems change occurring in our local school district. Steven missed out on many early intervention opportunities but now, as I work with families of young children, we have been creating a supportive network. There are now programs operating for young children with autism that weren't in place before. For this I am very thankful.

There are still struggles, but we are constantly learning new ways to help our son. He has a great team of dedicated professionals that he has grown up with and who care about him. Steven is doing so well now. He has a wonderful teacher who has made all the difference and benefits from a great placement at a school that really wants him there. He is a terrific child with language skills we only dreamed of seeing when we began. Often now our challenge is keeping him quiet!!

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This page last modified on 11-13-2002 (gkp)