I recently had a parent in desperation ask me what she should do. She had taken her daughter to the doctor several times. She knew in her heart that her daughter who was born at 32 weeks and was not developing as her peers at 3 had some sort of a disability, probably Autism, yet her doctor told the mother to wait a little longer to let her daughter catch up.
This is not an unusual scenario. It is played out many times daily in Pediatricians offices across the country. Since this child was born prematurely, in many states she would have automatically received early intervention at birth. I will explain early intervention in a minute. As a Child Development Specialist with a Masters Degree and over 17 years experience working in Early Intervention and Preschool with children with Special needs and their families. I gave her the following advice; First, parents know their children better than anyone else. If you suspect something is wrong, there usually is. Second, your child needs to be assessed. Find out who in your state’s State Interagency Coordinating Council (SICC). In California our SICC is the Regional Center. Call your local Elementary school and ask them if they know who your state’s SICC is. If they don’t know, have them refer you to the District’s Special Education Department, they will know.
Once you have found the SICC, you will want to tell them what you have seen, and then ask for an assessment of your child. The earlier you get this done, the better. The assessment by the SICC will be free, but you may wait up to 4 months to get it done. You can also have an assessment done by a Developmental Pediatrician, Occupational Therapist, Child Development Specialist or Child Psychologist. In California, the preferred assessment by our SICC is the Bayley III. You will have to pay for this.
So, what is Early Intervention you ask. The definition from the Early Intervention Dictionary is: “Specialized services provided to infants and toddlers who are at-risk for or are showing signs of developmental delay. Services emphasize the continued development of basic skills through planned interaction that will minimize the effects of the baby’s condition. Several types of qualified professionals may plan and implement early intervention services, provided in conformity with an individualized family service plan. These professionals include case managers, infant educators (who use developmental play activities to promote the infant’s acquisition of basic skills), physical or occupational therapists, speech and language therapists, audiologists, social workers, or individuals who rare trained to help infants and young children with acquiring new skills and behaviors, or to provide other services such as family training, screening, assessment, or health care. Early intervention services are provided under public supervision and at no cost (except where federal or state law provides for a system of payment by families.”
Early intervention was established in 1986 as part IDEA (Individuals with Disabilities Education Act) and established the Part C (Early Intervention) program. It was reauthorized in 2004 when President Bush signed legislation reauthorizing IDEA. The current IDEA 2004 Statute (P.L. 108-446) for Part C .
Part of Idea is Child Find. In the scenario above, the doctor should have referred mother and baby at birth to the state’s SICC because the baby was premature and at risk for a disability. If the state’s law’s didn’t include at risk children, at the very least, he should have been watching for signs that the baby wasn’t keeping up developmentally. The problem here is that Pediatrician’s are not educated in what developmental milestones are for children. They know what correct height and weight is, but now how many words a child should have at 9 months or when they should turn over or reach for things. That is a Child Development Specialists role. So many, many children fall through the cracks until they enter Kindergarten. Fortunately the CDC, Center for Disease Control has stepped in with a program to educate Doctors and the public with their “Learn Signs, Act Early” Campaign. . On their website, you can view or download the various materials for the “Learn the Signs. Act Early.” Campaign designed for parents and health care professionals to learn some developmental milestones, and to ask questions should a delay appear.
If your child qualifies for your state’s SICC services, you will be assigned to a Service Coordinator. Your Service Coordinator will meet with you and write up an IFSP, Individual Family Service Plan. The IFSP contains information about the services necessary to facilitate a child’s development and enhance the family’s capacity to facilitate the child’s development. Through the IFSP process, family members and service providers work as a team to plan, implement, and evaluate services specific to the family’s concerns, priorities, and available resources. This plan is about the entire family and what they need in order to help the infant/toddler to reach their potential. You may need respite care (skilled care giving service which allows the parents time away from the house) along with Occupational Therapy and other early intervention for your child.
While you are taking this journey into early intervention, you, the parent will have a lot of feelings to deal with including, denial, grief and being overwhelmed. Please look into support groups in your area where you can talk to other parents who have been through what you are going through, and came out the other side still standing and with an in-tact family. There are also many online groups for every disability. Please build a support group for yourself. We all need one whether we have a child with a disability or not.