By Lydia Abrams, MSW, LCSW
Many parents and primary caregivers of children with special needs are faced with unexpected challenges and emotions. However, they are not alone. Although their individual experiences may differ, many parents/primary caregivers have similar emotional dynamics.
Children with special needs include, but are not limited to, those with medical/health issues, Autism Spectrum disorders, developmental delays, speech/feeding issues, blind/visually impaired, deaf/hearing impaired, physical disabilities, chronic diseases, behavioral or mental health issues, premature birth, sensory issues, and learning disabilities.
Many parents/primary caregivers can learn to cope with the demands of parenting a child with special needs once they learn about the emotions with which they are dealing and how to address them.
Caregiver Emotions
Not all parents/primary caregivers may experience these emotions. However, it is helpful for them to be aware of the various emotions involved and to realize that their experiences and feelings are normal.
Grief
- Loss of the “perfect child” that was anticipated prior to the birth or diagnosis
- Hopes and plans for child’s future
- Lifestyle prior to child’s birth or diagnosis
Anger
- Toward themselves, partner, child
- Medical system
- Educational system
- Treatment team
- Religious belief system
Guilt
- Unable to protect child
- Child’s suffering
- Less attention toward other children
- Relationship with partner
- Less focus on self
Feelings of Isolation
- Depressed
- Unable to leave home
- Not wanting to interact with others
- Avoid having to explain child’s conditions and answer questions
- Resentment toward others with “normal children”
- Feeling like no one else understands what they are going through
- Can sense that other people are uncomfortable around child
- Financially unable to do activities
- Difficulty meeting child’s needs outside of home
- Lack of accommodations
Low Self Esteem
- Interactions with many professionals who assign various labels and diagnoses of child
- “Right parenting decisions” under normal circumstances may not work for child due to special needs
Fear
- Child’s future
- Educational needs
- Ability to live independently when older
- Safety
- Possible death
- Stable relationship with partner
- Own mental health
- Next “crisis”
Feeling Overwhelmed
- Lack of prior medical or advocacy experiences
- Learning details of child’s special needs and about related treatment
- Managing appointments for various specialists
- Dealing with insurance coverage and financial concerns
- Advocating for accommodations
- Managing time
- Some individuals may become forgetful, miss appointments, and experience other symptoms of stress
Feeling Detached
- Over-involvement in work or other activities
- Feelings of despair and hopelessness
- Detachment in other areas of life due to focus on child’s needs
Other Stressors
- Balancing career and family
- Lack of accommodations for child
- Child’s Individualized Education Plan (IEP)
- Attempting to meet needs of other family members
- Making choices regarding child’s treatment
- Dealing with other people’s reactions and opinions
- Decrease in support system; sleep deprivation
- Poor eating habits
- Lack of exercise
How can parents care for themselves and move forward?
Find a support system
- Meet and interact with other families of children with special needs (including those with different kinds of special needs)
- Locate or start a support group
- Seek discussion boards on the internet
- Re-establish relationship with partner
- Locate a therapist to address feelings
- Surround self with nurturing people that are accepting of child and parenting choices
- Utilize a treatment team that is supportive and empowers parents/primary caregivers to make choices that are right for their family
Find Balance
- Exercise
- Find enjoyable social activities
- Work outside of home
- Meditate
- Fun activities as a family
- “Alone time” with partner
- Utilize a baby sitter
Read
- Books by other parents/primary caregivers of children with special needs
- Enjoyable books/magazines
Acknowledge Positive Aspects of Child and Life
- Recognize that the child is a fighter
- See gains the child has made
- Realize own wisdom and strength
- Involvement in other children’s lives
Love the Child for who s/he is
- Identify what child has instead of what he/she does not have
- Acknowledge child as an individual who may have different life goals
- Learn to accept child for who he/she is
Other Options
- Attempt to focus on the present instead of the future: Once feelings of crisis have passed, attempt to focus on things that can be controlled instead of those that can’t be controlled. “It is the journey that counts – not the destination”.
- Gain understanding that life is about change: All parents are faced with different challenges related to their children.
- Utilize religious/spiritual resources and beliefs.
- Practice assertiveness skills: With treatment team, family, friends, and people in the community. Recognize that different treatment options work for different children/families.
- Remember that taking care of yourself is important to you and your child
