Advice for families and caregivers
Early Intervention, sometimes called "Birth to 3" or "Zero to 3," is a set of services given to young children with special needs in the hope of correcting any developmental delays, so the children aren't held back later in life. It provides a foundation for growth and communication and is a vital support to parents of children with special needs.
How should I prepare for the first meeting with the Early Intervention team?
Who will be on the Early Intervention team?
On follow-up meetings to set up a plan for the next year, are there any helpful strategies?
What is my role in dealing with the Early Intervention system?
Early Intervention and Down syndrome: What Early Intervention programs have helped kids with Down syndrome?
Early Intervention and Down syndrome: Someone recommended that we teach our son sign language. Is that a good idea?
Early Intervention and FXS: My child was diagnosed with FXS by a developmental pediatrician. Now what?
Early Intervention and FXS: What advice do parents of children with FXS have to offer?
Early Intervention and cerebral palsy: What aspirations can our family have for our child?
Early Intervention and cerebral palsy: Physical therapy has been recommended. How would a physical therapist help?
Early Intervention and cerebral palsy: My doctor recommended splints and casts for my child. Is that an old-fashioned approach, or is it still widely used?
Early Intervention and cerebral palsy: Some people have recommended Botox therapy for my child. Isn't it used for cosmetic treatment?
Early Intervention and cerebral palsy: I have heard that some children with cerebral palsy respond well to aqua therapy. Is that true?
Early Intervention and cerebral palsy: What are the advantages of horseback riding therapy (hippotherapy) for kids with cerebral palsy?
Early Intervention and autism (Asperger syndrome, mid-level autism and severe autism): What kinds of Early Intervention are used for autism spectrum disorder?
Early Intervention refers to a team approach in which a group of specialists will collaborate to give your child intensive therapy to help her develop to the best of her abilities. Team members can include occupational, physical, educational, social and speech therapists, psychologists and/or social workers, developmental pediatricians, and others. The idea is to intervene as soon as possible, while the brain and body are rapidly growing. Toddlers with special needs are entitled to Early Intervention services from birth to age 3.
Often, there are early warning signs that indicate a problem. As soon as your child is diagnosed with a special need, you can contact an Early Intervention program in your area. You can obtain information about Early Intervention programs from your doctor, your local school district, your state or county health and education departments, other parents, a local chapter of The Arc (an advocacy organization for people with developmental disabilities), or from Easter Seals.
Once you have contacted an Early Intervention program, a preliminary evaluation of your child will be done and you will be provided with initial recommendations. It is important to know that the Early Intervention program you choose can be changed if you later learn that a better program is available.
The Individuals with Disabilities Education Act (IDEA) requires that an Individualized Family Service Plan (IFSP) be completed by either a state or local government agency for every child eligible for Early Intervention services. The IFSP will include:
- Your child's development levels, needs and strengths
- Family information (with your agreement), including your family's priorities, concerns and resources
- The results that the Early Intervention should achieve
- Where, when, and for how long each service will be provided and how long each session will last
- Whether the service will be provided on a one-on-one or group basis;
- Who will pay
- The name of the service coordinator
- What will be done to support your child's transition out of Early Intervention into the next level of services.
The IFSP, which must be reviewed every six months, must also include family services such as:
- Helping parents learn how to reach and handle their child
- Helping siblings learn to cope with their new sibling
After age 3, states must provide Special Education services until your child turns 22. Help can be received from either public or private sources. Public services can be obtained by contacting your state Health or Education departments. Private services may be covered by health insurance.
This will be an important meeting, and the better prepared you are, the better the services that your child will receive. Bring all medical records, organized according to date.
- Bring your own assessment of your child's strengths and weaknesses.
- Note which times of day are best and worst for your child.
- Note which activities are most and least enjoyed by your child.
- Determine whether your child does better at home and if the evaluation should be conducted there, or if your child would do okay in an unfamiliar environment being interviewed by strangers.
- Consider whether a formal test would best clarify your child's strengths and weaknesses, or whether an informal assessment based on play would be more helpful.
- Think about whether having your child's favorite toys and foods would enable him or her to show her strengths.
- Consider bringing a video showing how your child reacts to various situations.
- Inform the team about what works best to soothe your child.
- Find out who will be doing the assessment and what their roles will be.
Here are a few tips that may make your role easier:
- It is important to keep copies of everything and make sure each therapist gives you notes after each session.
- Keep folders for each therapist and these notes will help you assess whether or not your child's development is progressing based on that therapist's help.
- The therapist is working to help your family and should fully answer all your questions in a way that makes sense to you.
- Keep a written record of every question you have for a therapist and every answer given.
- Bring written records and recommendations for services from any outside evaluations you have had done on your child to all ISFP meetings.
Shared topic: being an advocate
One mother reported that Early Intervention programs helped her child develop motor, language and social skills.
- When the child was very young, physical therapy every week helped build up muscle tone and coordination.
- Later on, speech and occupational therapy (which helped with issues such as language skills, hand-eye coordination and social skills) were also helpful.
Since some children with Down syndrome have serious speech delays, and since most are visual learners, some people choose to teach their children sign language so that they can communicate that way until they develop more speech skills. Each case is different and you, with the help of the support team you have assembled, will have to assess if that is the best approach for your child.
A FXS diagnosis usually leads to a family seeking Early Intervention.
Early Intervention for FXS usually involves an assessment and then therapy depending on the results of that assessment. The therapy can be given by an occupational therapist specializing in sensory integration, a speech therapist, a mental health therapist, a behavioral therapist tutoring in social interactions, and a physical therapist.
Here are some suggestions:
- Become your child's advocate.
- Learn everything you can about the disorder.
- Demand the services that will help your child.
Your goal is to help your child reach his or her maximum potential, whatever that is. Appreciate your child's unique qualities. Have fun together, in whatever way your child is able.
Depending on the level of cerebral palsy challenges your child has, reaching your child's goals may require a multidisciplinary team of professionals, including physicians, therapists (physical, occupational and speech), psychologists, educators, nurses, special education teachers and social workers. Ideally, these professionals will work together to address issues of social and emotional development, communication, education, nutrition and mobility. . It is best to begin as early as possible, while your child's brain and body are still developing. Early Intervention can include:
- Occupational therapists working with your child to foster the maximum degree of self-care and functional independence possible.
- Speech therapists through oral motor work enhancing your child's sucking, eating, and vocalization. This and later work will facilitate communication through both facial and verbal means, making speech as intelligible as possible. If muscle control of speech is too difficult, speech therapists may help teach use of augmentative communication devices or sign language.
- Physical therapists training the brain to foster independence in movement and strengthen muscle tone.
- For stiff and tight muscles, working and stretching them should increase comfort.
- Weak muscles can be strengthened, and depending on your child's specific characteristics, a physical therapist might work with your child to gradually enable:
- Use of a wheelchair
- Climbing stairs
- Use of a walker or braces
- Kicking or throwing a ball
- Riding a bike
- Identification of appropriate exercises
Treatments for autism include Applied Behavior Analysis (ABA); Floortime; Gluten Free, Casein Free Diet; Occupational Therapy; PECS; Relationship Development Intervention; SCERTS; Sensory Integration Therapy; Speech therapy; TEACCH; and Verbal Behavior Intervention.
See an expanded section of the Caregiver Guide for Special Needs for more information about treatment and therapy for autism.