Ensuring Self-Care for Parents Raising a Child with CdLS

Raising a child with special needs produces many joys and challenges for parents, and is often considered one of the most difficult roles one will ever maintain. Even with the most intense demands, parents must learn how to care for themselves as they simultaneously care for their child.

Self-care is an intentional action one takes to ensure physical, mental and emotional health. Quality self-care is often a challenge for parents of children with special needs, albeit advantageous and necessary. Below are useful strategies to ensure quality parental self-care.

Acknowledge Your Grief

Disability is not something we anticipate when having children, and when we are confronted with this reality, negative emotions often ensue. It is necessary to recognize your grief, anger, and other negative emotions that being a parent of a child with special needs sometimes elicits. Do this without feeling guilty. There is nothing wrong with acknowledging these natural emotions. Once you are able to sort through these emotions, you will find yourself more emotionally and physically capable of managing your situation.

Address Basic Physical Needs

Be mindful of how you are treating your body. Try to add an extra 30 to 60 minutes of sleep every night. Increase physical activity in new ways (e.g., taking the stairs instead of the elevator). Find what helps you self-soothe, and try to engage in these activities on a weekly basis. 

Practice Gratitude

It is easy to remain focused on the egative components of caring for a child with special needs. Take a few minutes daily to identify something you are grateful for. Perhaps keep a gratitude journal,or express gratitude to someone in your family. Practice more random acts of kindness. When we shift our focus to practicing gratitude and kindness, it reduces negative preoccupations that accompany our caregiving role.

Nurture Your Marriage

Raising a child with special needs can certainly add strain on any marriage, but it does not have to destroy your marriage. Make sure you are taking time for you and your spouse to stay emotionally connected to one another, and make sure you are communicating your needs and feelings to your spouse regularly.

Ask For Help

Asking for help is difficult, but is often a necessity when raising a child with special needs. Make
the choice to ask for more help, even if you do not want to. Know who in your circle is willing to help, and try to
identify what types of help are most beneficial. Protect Your Time: Get creative with generating new increments of time for yourself. Take the longer drive home from work or take an extra ten minutes in the shower. If you create more time for yourself, use it to engage in healthy self-care activities. Do not fill extra time with more work and do not commit to new obligations.

Remove Toxic People

Having a strong and healthy support system is crucial. Take a moment to reevaluate your current social support system. Are there family members or friends who are causing undue stress, being unsupportive, or creating unnecessary conflict in your lives? If so, consider setting new boundaries, or removing these people from your lives altogether.

Utilize Respite Care

Take advantage of respite care programs offered in your area. It is essential to have time away from your caregiving role to replenish and reenergize.

Educate Family

Family members do not always possess the depth of understanding that parents of a child with special needs have. Consider educating your family members and friends about CdLS, and how it manifests itself in your child. Educate them about physical, emotional, and behavioral issues that your child may be struggling with, and provide suggestions for how they can be helpful when these issues arise. This can reduce frustrations with family members who simply do not know any better.

Befriend Those Who Have Children with Special Needs

Connect with those who “get it.” Parents benefit from finding someone they can talk to who truly understands the magnitude of their situation. Developing these connections allows you to share stories, gain insight, provide mentorship, and share humor. Consider the possibility of a parent support group as well.

Reevaluate Your Expectations

Having unrealistic expectations and standards for yourself, your child, and your situation can cause heightened stress and disappointment. Make sure your expectations are realistic and aligned with your current reality.

Seek Therapy When Needed

Never hesitate to speak with a therapist to help you navigate your role as a parent of a child with special needs. Having an objective viewpoint and someone to help you cope effectively with emotions, anxiety, and conflict is a healthy and proactive decision.

More valuable information on parental self-care can be found in the book, Thrive Now Blueprint: Self-Care & Success Strategies for Parents of Special Needs Children (2014) by Siobhan Wilcox.

Katherina Nikzad-Terhune, Ph.D, LCSW,
Katherina Nikzad-Terhune, Ph.D, LCSW,

Therapist, Beaumont Behavioral Health; Affiliate Faculty University of Kentucky; CdLS Foundation Family Service Committee

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Last modified by Gerritjan Koekkoek on 2021/07/04 21:15
Created by Joris van Rooden on 2015/07/09 21:35
Translated into en by Joris van Rooden on 2015/07/09 21:57


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