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My son is just six weeks old. He was born with both spina bifida and hydrocephalus, but the opening in his spine was closed and cerebro-spinal fluid shunts were in place within 2 days of his birth. I don’t know what to expect for the future. The doctors say my son may walk with braces and crutches, or he may use a wheelchair. They also told me that, because of the hydrocephalus, he might have learning disabilities. I am being encouraged to enroll my son in a program called “First Steps”. How will this program benefit my son now if we know so little about his future abilities and needs?

It is true that nobody can tell you, specifically, whether your child will have learning differences or whether he will require assistance for mobility as he grows. However, to assist your child in achieving all that is possible in the future, interventions now, and in the first three years of his life, will help your son later on.

An early intervention program, such as First Steps, will help you understand your son’s specific needs, and assist you in preventing situations that could interfere with his growth/development. These supports could be in the form of counseling, physical therapy, assistive technology devices, medical evaluations, transportation, or a combination of these or other forms of aid. Participation in First Steps is strictly voluntary. You may have been referred to First Steps by your child’s pediatrician or the social work staff at the hospital where your son was born.

Services for First Steps are obtained through your local Missouri Bureau of Special Health Care Needs office or through one of the twelve Regional Centers for Developmental Disabilities in the state. An evaluation will be needed to establish eligibility and decide which interventions will be a benefit to your son. There is no charge for the evaluation. If your son does qualify for First Steps Services, intervention services listed on his service plan will be provided to your family.

You can contact the Missouri Bureau of Special Health Care Needs at 800-451-0669 or find your local Regional Center by calling the Department of Mental Health, Division of MRDD at 800-207-9329.



Michelle Reynolds, Director of the Missouri Developmental Disabilities Resource Center, University of Missouri-Kansas City



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Last update: Wednesday, April 14, 2010



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