Among the many challenges of parenting children with special needs:
– 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 those parenting children 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 get over the guilt
– 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 and lead to chronic sorrow
SELF-CARE AND SUPPORT
Parenting children with special needs often causes one to be exhausted and frequently 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
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