Among the many challenges are:
– Learning about the disability
– Researching, locating, and accessing effective treatments and resources
– Coping with the emotional and physical demands of caring for an individual with a disability
– Getting to the innumerable appointments with medical providers, therapists, advocates, and school personnel
– Advocating for appropriate school interventions, accommodations, and/or placements
– Paying for the many treatments and interventions not covered by health insurance or the school system
STRESS
The burden of stress is great for parents of those with special needs. A recent study found that mothers of adolescents and adults with autism had levels of stress hormones comparable to soldiers in combat.
Finances are often a source of stress. Frequently one parent, usually the mother, sacrifices her career to attend to the child’s needs with a resulting loss of income for the family.
The emotional impact is enormous and may include:
Fear and worry about:
– The child’s pain and suffering
– The child’s future
– The question of whether you are doing enough or doing the right things to help the child
Guilt over:
– The limits of your ability to protect the child
– The loss of attention toward other children, your spouse, and aging parents
– Your jealousy and resentment of those with “normal” children
Feelings of isolation because you:
– Miss out on many family-oriented activities because your child’s disability prevents her/him from successfully participating
– Encounter criticism and judgment of your parenting from others who don’t understand your child’s disability
– Feel like an outsider around parents of typically developing children
Grief over:
– The loss of hopes and dreams you had for the child
– Not having the parenting experience you’d imagined
– Recurrent reminders of what your child misses out on lead to chronic sorrow
SELF-CARE AND SUPPORT
Parents of children with special needs are often exhausted and frequently become depressed. Their reserves of time and resources for self-care are even more depleted than those of parents of typical children. Yet their need for refueling is also greater. To be sustained through the marathon of caring for a child with special needs, it is essential that parents attend to their own needs. There is useful information throughout this website on caring for one’s self and well-being.
Often the most beneficial support and information parents receive is from other parents of children with special needs. In recognition of this, a group of parents at BU founded a peer support network to help parents connect with other BU faculty and staff who are caring for a child with a disability. The network created a secure website (with access requiring a Kerberos password) where parents share their stories and invite other parents to contact them for support, resource information, and guidance. The website contains a Get in Touch link through which additional parents can join the network.
Other sources of information and support are:
– Books by other parents of children with special needs
– Internet discussion boards or online parent support groups
– Local support groups (consider starting one if none exists)
– Advocacy groups, both general and disability-specific
– School district Special Education Parent Advisory Council (SEPAC)
– The PACER Center for children with disabilities: http://www.pacer.org/
– Sign up to receive news from the Neuropsychology & Education Services for Children and Adolescents (NESCA) group practice blog
The BU Faculty & Staff Assistance Office has counselors with specialized experience in helping parents through the challenges of raising children with special needs. For counseling, support, or assistance finding resources and services for yourself or your child, contact the FSAO at 353-5381
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