When an ‘Ordinary Life’ Is a Magnificent Feat : Feelings of inadequacy can put a strain on families dealing with disabled children. Bridging the gap between parents and the state’s social services is key.

As I sit in front of the computer in my office in Sacramento, a picture of my son Eric catches my eye, a clear reminder of what I am here to do.

As an advocate--but more importantly, as a parent--I am all too familiar with the challenges families face when their child has a developmental disability.

Eric’s Down’s syndrome has made our family life quite challenging.

When he was 5 months old, he developed infantile spasms and was misdiagnosed as being cortically blind and deaf. I remember holding him in my arms and smiling to him--and getting absolutely no response. For months we were told that he would be profoundly retarded. Fortunately, we sought better medical treatment.

At 3, he developed Atlanto-Axial Instability and was becoming paralyzed. He had two neck surgeries and wore a halo and neck braces for almost a year.

Rehabilitation was draining; the fear of losing him was overwhelming.

Feelings of inadequacy put a strain on family relationships. I would see him just lying there, feeling so weak and incapable of dealing with it. I loved him so much and yet I could not help or take away his pain. I would lie next to him, hold his hand and whisper time and again that I loved him. There were days I felt I couldn’t handle it.

Eric is 7 now and a student in special education at Florence Elementary School. He can’t write but he can type with a computer. He’s a real cutie-pie.

I hope to be an important link between the Administration, the Legislature, parents and the community. This department serves 110,000 people with developmental disabilities across the state. About 6,400 of them reside in the state developmental centers, 35,000 in community care facilities and the rest with their families.

Some families--especially the ethnic populations--face greater challenges. Family values and cultural characteristics play pivotal roles in how and when the family seeks help. In some instances a father can see his role as the family provider questioned if he asks for government assistance. Oftentimes families keep disabilities a secret, hoping for a miracle to occur and not seeking services. And when these families, embarrassed to ask for help in the first place, are denied assistance, they do not use the appeal process.

If the service system is not responsive, the result is that the child does not receive the appropriate services, oftentimes exacerbating the disability, dismantling the family unit, or both. The department has set up an ethnic minority committee to help us create a system responsive to those needs and will host a multicultural conference next year.

The governor has made developmental services a priority, protecting such services as early intervention, case management, residential and supported living, supported employment and family support that enable these individuals to lead more productive lives.

With an annual increase of 4,000 caseloads and a decreasing per capita budget, the challenges couldn’t be more daunting. We are expected to provide more with less. We have had to figure out creative ways of doing so while maintaining a decent level of care for all of our clients. Parents and the community have provided input to ensure that essential services are maintained, and have realized that the state will protect our children with disabilities but cannot be asked to provide the same amount of services as it has.

Wilson’s commitment to people with developmental disabilities is illustrated in his proposed 1993-94 budget, increasing total community program funds by $72 million about 10%.

I sometimes wrestle with questions such as: How can we best serve our children, given the fiscal constraints we have? How can we prevent abuse at home, at the community settings, at the developmental centers? What other procedures can we set, that will dignify people like my son?

In reviewing legislation, procedures, reports, his little face comes to mind, sometimes painfully as when I read an abuse case, sometimes hopeful as when I read the tremendous advances some of our clients have made in their communication skills through assisted technology, or when I read about the hundreds who are or will be living independently through our community supported program.

I don’t know why my son was born with Down’s syndrome. I don’t know why we were given the challenge. But I welcome the opportunity to serve people like my son and I look forward to helping create policies and procedures that will enable them and their families to live “ordinary” lives.