The Path of Acceptance: the Journey of Parents with Children Who Have Special Needs

I have had my share of memorable incidents with parents whose children I have assessed to have certain special needs. I recall one parent who threatened to sue me if anything of what I just told her “got out to other people.” Maybe I was remiss in educating her about the strict adherence to confidentiality in our professional ethics. Perhaps I was not tactful enough in explaining what I thought her son needed. Whether these were factors that justified such threats, I will never know. What I do know is that parents go through a very rough time when they first hear from a professional, like me, that their child has special needs, particularly when these special needs are due to lifelong conditions/disabilities that have no known cure and also bear a stigma in society.


Some of these conditions I am talking about include the following: Mental Retardation (also known as Severe Learning Disabilities, Global Developmental Delay or Intellectual challenges); Pervasive Developmental Disorders (and its specific gradients of severity that are seen in Autism, Asperger’s Syndrome, and what may be termed as the Autism Spectrum Disorder); Attention Deficit Disorders (also referred to as ADD or AD/HD); Specific Learning Disorders (also known as LD’s or Learning Deficits). These conditions are often believed to be life-long and have an impact on various developmental stages of the person’s life. As these disabilities or conditions cannot be strictly classified as illnesses, they have no known cure. Most of the long-term interventions for these groups of young people aim at helping them become as self-sufficient and as well-rounded as they can be.

I know that parents go through the grieving process (as described in my post dated March 26, 2010) when they learn about their child’s condition/disability. I have seen parents spend years in denial, constantly finding potential miracle cures for their child’s condition. They desperately cling to the hope that some fad treatment might work despite scientific evidence that only certain kinds of time-tested interventions have been proven to be effective. Moving along, the threat I got from my story earlier appears to be a combination of this denial and anger, which is also part of the bereavement process. Bargaining is also often mistaken for hope when a cure for the condition is sought through some spiritual healer or novel cure-all food supplement. Over time and with much struggle, some parents begin to feel helpless and depressed after spending much time and energy trying to find a cure.

Only after going through the above-mentioned stages of grief, at least to some extent, can parents really come to terms with the reality that they are facing. Parents who have truly accepted their child’s condition are often at peace. I often observe the following among these parents:
• understanding the unique pace and personality of their child;
• appreciation of the unique gifts of their child;
• joy that come with the acknowledgement of the incremental (often slow) progress and change observed in their child;
• find meaning in having a child with special needs;
• feel at peace, find renewed hope, and enjoy life more; and
• sustain a “life-goes-on” attitude.

On this journey towards acceptance, these parents spend much time educating themselves about their child’s condition. They don’t limit their understanding of their child from the diagnostic and prognostic perspectives only, but also venture into getting to know their child as an individual who has unique qualities and gifts. They reach out to those who can help them understand the individual personality and strengths of their child, including those who share the same situation as they and professionals who help their children. Along the way, their perspectives of their children and themselves as parents make a shift. From the previously held ideas of how children “should” and “ought” to be, they start seeing the reality that all children are unique individuals who bear both inherent strengths and areas of improvement.

Acknowledging their need for self-care is also helpful for many of these parents. They may continue to pursue their personal goals amidst the demands of parenting a child with special needs. They can also benefit from having some alone time.

For some parents, finding a voice for their children through advocacy work gives them a sense of meaning and purpose. They become agents of change in society that work towards promoting the rights of people with these disabilities. In many instances, they even set up schools and organizations that promote the welfare of their own children as well as other children who are in a similar situation.

This path of acceptance is not an easy journey. It is riddled with struggles and self-searching. As the child with special needs grows up, old issues get resolved and new concerns emerge. At this juncture, a question begs to be asked: how is this similar to or different from the path of parenting any child?