Libbie and Joe
Libbie wrote to me and asked if I had written any articles on the resiliency of families with special needs children. Her youngest son, Joe, has multiple disabilities and I asked Libbie to tell me about how her family has utilized resiliency over the years. Here’s what she wrote:
As far has having resilience regarding our son, I think I am getting better as I get older. It is a continuous process. A sense of humor and appreciation are so important. Also, allowing yourself a little down time when needed. This past year when we learned of Joe’s chromosome abnormalities, I allowed myself to grieve. This is not something I have ever really done. As difficult as it was, it’s what I needed so I could accept that this is my son’s life, our life, and our future. I was able to bounce back because I allowed myself the time to acknowledge the realities of our lives. Also, I keep reminding myself that when I was blessed with these beautiful boys my original goal as a mother was to raise two polite, caring, and happy young men. Those are goals that are achievable for Joe as well as Justin [my older son who is at college].
Libbie’s honest response about her family’s journey with Joe inspired me. Although I previously have not written about resiliency with special needs families, I did a partial review of the literature and found some common threads in resiliency practices within the research. Here are 9 ways families with special needs children practice resiliency (these are not in any particular order):
1. Utilizing support systems. Families with a disabled child benefit extensively from garnering support from as many areas as possible: nuclear and extended family, schools, medical systems, and specialized programs for kids with disabilities, just to name a few.
2. Making meaning of adversity. Families who reflect on what it means for them to have a special needs child often find that there are positive lessons to be learned and that the child (or children) enhances the richness of the family experience. Which leads to . . .
3. Changing world views. Many families have found that their special needs child has broadened their view of the world as a whole including being more clear about what really matters in life. As Libbie noted, A sense of humor and appreciation are so important. Being positive, loving, and celebrating small accomplishments become priorities for these families. “Don’t sweat the small stuff” can be a new and freeing way of life.
4. Regaining coherence by thinking differently about the child. In the research studies, many participating families reported feeling fractured initially by the stress of change brought on by a child with disabilities. However, these same families found that once they started realizing the strengths of the child and the positive impact the child created within the family, the family became coherent again albeit in a new way. Libbie: Also, I keep reminding myself that when I was blessed with these beautiful boys my original goal as a mother was to raise two polite, caring, and happy young men. Those are goals that are achievable for Joe as well as Justin [my older son who is at college].
5. Affirming strength and becoming more compassionate. One of the ways families’ world view changed is that they prioritized strengths rather than deficits both with the child and within the family in general. One characteristic that research families consistently mentioned was that of becoming more compassionate as people. Even young siblings of the special needs child noted that they found themselves being more sensitive toward others.
6. Managing the boundaries. There were two ways in which boundaries created resiliency for special needs families. First, family members benefited from consistent rules and routines being observed by all family members, including the special needs child. Secondly, family members learned to manage and honor their personal boundaries. Libbie found that to be true for her recently: This past year when we learned of Joe’s chromosome abnormalities, I allowed myself to grieve. This is not something I have ever really done. As difficult as it was, it’s what I needed so I could accept that this is my son’s life, our life, and our future. I was able to bounce back because I allowed myself the time to acknowledge the realities of our lives.
7. Construction of new identities. Families often reported that they went through a period of adaptation and adjustment as their identities changed with the arrival of a special needs child. As Libbie said above, I think it’s a continuous process. Her comment reflects the experiences of many family members who find the need to re-invent themselves over the course of their lives with their special needs family member.
8. Combining hope and possibilities with a realistic view and acceptance of the situation. Families who held optimistic yet realistic outlooks were among the most resilient in the studies.
9. Having a spiritual belief system. This does not always mean a religious faith, but resilient families were able to draw on, increase, or sometimes develop a new spiritual belief system while living with and raising a special needs family.
Takeaway points: There are many ways for families with special needs children to become resilient. Did you notice that most of them have to do with acceptance, learning to think differently, and finding the gifts in adversity?
If you have a special needs child or know someone who does, what do you think about these resiliency factors? What would you add or take away?
Note: I plan to write a longer article on this aspect of resiliency and will announce it here when it is completed. In the meantime, here are the articles that supported this post:
Bayat, M. (2007) Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research 51, 702-714.
Grant, G., Ramcharan, P., & Flynn, M. (2007) Resilience in families with children and adult members with intellectual disabilities: Tracing elements of a psycho-social model. Journal of Applied Research in Intellectual Disabilities, 20, 563-575.
King, G., Zwaigenbaum, L., Baxter, D., Rosenbaum, P., & Bates, A. (2005) A qualitative investigation of changes in the belief systems of families of children with autism or Down Syndrom. Childcare, Health, and Development 32, 3, 352-369.
Knestrict, T. & Kuchey, D. (2009) Welcome to Holland: Characteristics of resilient families raising children with severe disabilities. Journal of Family Studies, 15, 227-224.
Heiman, T. (2002) Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities 14, 2, 159-171.