Written by Rebecca Bardenhagen, M.Ed. and Lakshmi Mahadevan, Ph.D.
When a child is diagnosed with a disability, it can be a stressful time for the people who love the child. It can be frightening and sometimes overwhelming to face an uncertain future and the prospect of making decisions that will affect a child’s life. Understanding the realities, challenges, and emotions that parents/guardians deal with day to day can be important for service providers to effectively work with these families. For parents/guardians, the reality of living with a child with a disability may include the following (Boston University, n.d.):
- Stress resulting from daily challenges with the child.
- Financial worries due to cost of treatments as well as one parent/guardian having to sacrifice their career to attend to the child’s needs.
- Fear about the child’s future.
- Questions regarding if the parent is doing the right things to help the child.
- Guilt over the loss of attention toward other family members.
- Jealousy of those whose children are without disabilities.
- Feelings of isolation if activities are missed due to the child’s disability.
- Encountering criticism from other parents who don’t understand the child’s disability.
- Grief over the loss of dreams one had for the child.
Service providers can offer suggestions and resources to help parents/guardians cope with the realities of living with a family member with a disability in the following ways (Autism Speaks, 2017):
- Seek out as much information as possible on the diagnosis but always verify the information found, especially as it applies to treatments, education and life skills.
- Realize that it takes time to adjust to this new situation, and it is natural and understandable to feel upset and frustrated.
- Encourage parents/guardians to take some time for themselves, individually and as a couple, as the stresses of caring for a child with a disability can strain a marriage or relationship and sap one’s inner resources.
- Seek out support groups with others who are experiencing similar circumstances. These groups can be helpful from a perspective of support and dissemination of information, and they can function as a social outlet for the child, their siblings, and the parents.
- Look into local, state and national organizations in which you can become involved to learn more about the disability.
- Parents/guardians can help to educate others about their child’s condition and actively teach the community how best to accept and interact with their child.
- Offer assistance to other families who are experiencing the same or similar This can be therapeutic.
In addition, we have complied a number of resources that families may find helpful as they cope with and come to an understanding about their child’s disability. Share them with families who may be looking for ways to gather information, advocate for their child, or who are simply looking for support from others in a similar situation.
Autism Speaks (2017). How Is Autism Diagnosed? Retrieved on May 17, 2017.
Boston University (n.d.). Parenting Children with Special Needs. Retrieved on May 7, 2018.