Caring for a Child with Special Needs

Posted on January 30, 2019 by CHS

Parenting a child is a rewarding job that involves some challenges along the way. Children need love, acceptance, and support from their families. A child with special needs is no different. Caring for a child with special needs can require parents to become more reflective of their own parenting style and expectations, and be more mindful of and adaptive to their child’s needs. Parents may need to change their perspective, adjust their expectations, and alter the way they do things, but the rewards outweigh the challenges.

What does “Special Needs” mean?                   
A child with special needs requires special care because of emotional, health, intellectual, or physical reasons. Developmental milestones are typically specified with an age range instead of an exact age (e.g.: between nine and eighteen months, instead of at twelve months). This is because children grow and develop at different rates. The timeline in which developmental milestones are reached depends on a variety of factors such as genetics, access to prenatal care, birth circumstances (premature, complications, etc.), environment, and the quality of relationships.

Children with special needs may also be referred to as children with disabilities. According to the Americans with Disabilities Act (ADA), children with special needs have physical or mental disabilities that may limit them from “major life activities,” such as breathing, learning, hearing, seeing, speaking, or walking. There are many different types of special needs. The child may also have a combination of disabilities that may make learning or other activities more difficult.

Some areas of developmental delays or disabilities include:

• Communication: e.g. hearing impairment or voice disorders.
• Emotional and Social: e.g. autism spectrum disorder (ASD), emotional disturbance, depression, anxiety, or eating disorders.
• Intellectual (Cognitive): e.g. dyslexia, learning disorders, or intellectual disability.
• Physical: e.g. allergies, being without a limb, or blindness.

Parenting a Child with Special Needs
Every parent wants the best for their child. . Parents may have a strong emotional response when they hear their child has been diagnosed with a special need. They may experience denial, loneliness, fear, worry, guilt, or anger. Talking about these emotions and working through them with a family member, friend, or counselor can help parents realize that they are not alone and that they are capable of raising their child in a way that fosters confidence, creativity, and resilience.

It is important for parents to remember that they need to take care of themselves first in order to be a strong support for their child. This means getting enough sleep, food, and exercise. It also means understanding their personal limits, learning to manage stress, and knowing when to ask for help. Parents can create a circle of support that includes family members, friends, the doctor, therapist, and social worker. Then when parents need a break, they can ask one of their support people for help.

Family members and friends can give parents breaks to sleep, attend a support group, or run errands alone. Social workers can help arrange respite care and financial assistance, or find other resources like support groups, affordable therapists, and additional medical services. Doctors and therapists can connect parents with information and training regarding their child’s special needs.

Routines and Family Time
Establishing routines helps the parent and child not only get through the day, but be fully present and engaged. All children benefit from routines because it helps develop a sense of predictability and safety for them. In the case of children with special needs, routines are a key factor in behavior management and learning to be independent. The repetition of routines helps children learn and creates a feeling of familiarity and safety. For children with special needs that experience motor (muscle) delays, simple routines for self-care like getting dressed or eating can be a challenge. The familiarity of a routine can help children feel safe, relaxed, and prepared to learn.

Parents can also create routines within routines. For example, washing hands at certain times of the day is part of the routine, but there is also a routine for the process of washing hands. First, children turn on the water, wet their hands, pump soap into their hands, scrub their hands together, rinse thoroughly with water, dry hands, turn off the faucet with a paper towel, and throw the paper towel away in the trashcan. These routines or patterns make it easier for children to understand expectations, acquire the skills to self-initiate tasks, and become more independent with daily living skills like dressing, eating, bathing, brushing teeth and hair, and going to sleep.

Children with special needs may become overwhelmed, frustrated, or angry when they encounter a challenging situation, disruption in routine, are left in the care of a new person, or are in an unfamiliar environment. In order to alleviate a child’s stress, it is important that parents recognize what triggers their child’s feelings of uneasiness, and then create a routine that can be used in moments when the child requires extra reassurance.

Some children will create their own soothing rituals such as sitting down and rocking back and forth, or focusing all their attention on a favorite activity such as a puzzle, or building with blocks. Other children need help creating their own rituals. Parents can practice taking deep breaths with children during moments of relaxation, and talk about how when we feel overwhelmed, nervous, or uneasy about what is happening around us we can take deep breaths to help us feel calm and relaxed. There is a link below to a deep breathing video with Elmo by Sesame Street. Children can also watch and listen to a song about belly breathing (deep breaths). If children have trouble understanding how to take a deep breath, they can practice pretending to smell a flower and blow out a candle (there is a link below with further instructions).

Parents and children create family rituals for spending time together.  By picking an activity that everyone in the family enjoys, such as movie night, weekend hikes, or making pancakes together on Sunday mornings, parents and children have fun and spend quality time together. Establishing a family routine fosters and strengthens familial bonds, encourages collaboration, and bolsters our ties with one another. This is also helpful if there are siblings because it helps them find common interests they can share

Education and Support
When searching for child care or a school program it is important to note that inclusive environments can benefit all children. Children’s Home Society of California provides a brochure called Choosing Child Care (link below) that offers parents a checklist for selecting an appropriate child care based on their family’s needs. The California Childcare Health Program (CCHP) provides a Child Care Checklist for Quality Inclusive Care (link below) that can also help guide parents in making the best choice for their family.

The Individuals with Disabilities Education Act (IDEA) is a federal law that protects a child with special needs. The IDEA allows parents or schools to request an evaluation for a child if they suspect that the child may have special needs. If it is determined that special needs are present, the law requires that the child be given an Individualized Family Service Plan (IFSP) or an Individualized Education Program (IEP).

IDEA also states that public schools are required to provide free public education to children with identified special needs. Parents have the right to be involved in their child’s education by participating in their child’s annual IFSP or IEP team meeting to discuss the progress that has been made and set goals for the next school year. If a parent does not agree with the plans the team makes, the parent may request mediation or “due process” where an advocate or lawyer steps in to help settle disagreements.

An IFSP is a plan for families and professionals to support a child with special needs who is between the ages of birth and three years. The IFSP describes the child’s current levels of development, lists the resources, priorities, and concerns of the child and family, sets measureable goals for the next six to twelve months, and determines which early intervention services, such as hearing services, home visits, or nutrition counseling, will be most beneficial to support the child’s development.

Public school districts are required to develop an IEP for each child with special needs between ages three and twenty-one years. The IEP team includes a parent or legal guardian, caregiver or teacher, special education teacher, related service provider, such as a speech therapist, and a representative from the school district. Optional team members may include an interpreter or child advocate. The IEP team may meet one or more times during the school year. The IEP includes a description of the child’s special needs, an outline of the child’s special education needs, a set of annual, measureable goals for learning and behavior growth, and a list of any additional support services the child may need, such as occupational and physical therapy.

References and Resources

The following links are either referenced in the blog above, or provide additional information and support for parenting children with special needs.

• California Early Start Central Directory of Early Intervention Resources
• Challenges of Families Raising a Special Needs Child by Center for the Developing Mind
• Child Care Checklist for Quality Inclusive Care by the California Child Care Health Program
• Choosing Child Care (CHS Brochure)
• Deep Breathing Activity: Flower and Candle
• Deep Breathing Activity: Belly Breathe with Elmo (Video)
• Department of Education Information on Disability
• Developmental Milestones from the Centers for Disease Control and Prevention
• Financial Planning for Kids with Special Needs by KidsHealth
• Find Advocates or Lawyers for Special Education
• Healthy Children Radio Tips for Parents
• Publications Related to Child Care and the Americans with Disabilities Act (ADA)
• Reasons for Concern (Pamphlet by the California Department of Education)
• Schools: 504 Education Plans by KidsHealth
• Schools: Individualized Education Programs (IEPs) by KidsHealth
• Special Education Rights and Responsibilities Handbook
• Special Education: Getting Help for Your Child by KidsHealth
• Special Needs Information for Parents (CHS Brochure)
• Special Needs Information for Caregivers (CHS Brochure)
• Survival Tips for Special Needs Parents by the Center for Parenting Information
• Team of Advocates for Special Kids (TASK) Locations in Southern California
• Understood: Resources and Support for Learning and Attention Issues