Monday, November 16, 2009

Family Matters

In this blog, I’ve already talked about how I think that families are the truly underserved population when it comes to services for individuals with developmental disabilities. I’d like to expand on that today, and pose a couple of questions. Are parents of children with developmental disabilities reluctant to discuss the impact it has on their lives, and does reluctance this contribute to a lack of understanding of issues surrounding developmental disabilities in the community?

I’ve been in this field for more than twenty five years. Despite that, I don’t claim to truly know what it must be like to have a child with a developmental disability. But I do know these two things:

1. Most parents I meet love their children unconditionally and are more than willing to do whatever it takes to ensure that their child with a developmental disability has the opportunity to succeed to the best of their abilities and desires, and

2. Having a child with a developmental disability can potentially impact a family negatively in a variety of ways.

For some examples of the potential negative impact, take a look at the information below from the love to know website about the impact having a child with autism can have on families. I think these factors hold true for families with children who have other cognitive and developmental disabilities as well.

Emotional Impact
Autism is an emotional roller coaster ride that begins before diagnosis and continues throughout life. Parents and other family members of autistic children often feel alone, isolated, and ignored before receiving a diagnosis. Upon learning that their child may be autistic, emotions may fluctuate between the relief of finally knowing what is wrong, to the despair that the child suffers from a disability with no known cure. Following diagnosis, confusion, guilt, anger, depression, and resentment may occur. Anger and guilt can be devastating to marriages and other family relationships if not dealt with promptly. Faced with a lifetime of challenges, family members may become depressed or even suicidal.

Social Impact
The isolation experienced by families of autistic children can be severe. Isolation may occur for a variety of reasons and leave parents lonely and depressed. Many parents have a difficult time socializing with parents of "normal" children, and some may feel they no longer have anything in common with the social circles they were once involved in. As the autistic child grows older, and the difference between him and his peers becomes more obvious, the isolation often becomes extreme. Friendships may dissolve as caretakers abandon hobbies and outside interests.

Physical Impact
Anxiety, depression, and exhaustion all take a toll on the physical health of autistic families. Long days of appointments and therapy sessions, repeated calls to the school for meetings and conferences, and a chaotic household can leave parents of autistic children feeling fatigued, stressed out, and irritable. Hectic schedules and unusual meals planned around the child may lead to vitamin and mineral deficiencies, and sleep deprivation may result in difficulty concentrating, memory impairment, and other health complications.

Financial Impact
The financial impact on families of autistic children is enormous. Most private health insurance plans do not cover all expenses related to therapy and treatment for autistic children, and the co-pays for office visits and medications often results in huge financial debt. Moreover, it is often extremely difficult for both parents to continue working full-time, which means a reduction in household income to go along with the increased expenses. Without financial support, many families of autistic children end up in debt, with many losing their homes due to foreclosure or bankruptcy.

And yet, I find that many of the parents I interact with don’t want to discuss that part of their lives. They will advocate tirelessly for their children and offer gentle (and occasionally not so gentle) suggestions, ideas, and critiques of the services their children are receiving. But they usually won’t talk about the impact on them.

I think this has something to do with the stereotypes surrounding families of children with disabilities. I recently came across a quote from Dr. Ray Barsch, a pioneer in the field of learning disabilities, regarding the no-win situation families with a child with developmental disabilities face in their interactions related to their child with others:

“If the parent is militantly aggressive in seeking to obtain therapeutic services for his child, he may be accused of not realistically accepting his child's limitations. If he does not concern himself with efforts to improve or obtain services, he may be accused of apathetic rejection of his child. If he questions too much, he has a "reaction formation" and may be over-solicitous. If he questions too little, he is branded as disinterested and insensitive.”

You can read more here.

Although that quote is from 1968, I suspect that it still holds true even today. And I further suspect that because it holds true today, parents are even less inclined to talk about their own issues since even discussing their child’s issue can be so difficult and perplexing.

I say I suspect that is the case, but I’m not sure. I would welcome comments from families to help me better understand.

The reason I want to understand better is because I think there is a lack of awareness in our community of the true and complete impact that having a child with a developmental disability can have on a family. This lack of awareness impedes our ability to promote our cause and issues beyond the relatively small DD community in Colorado. You need look no further than the failure of Amendment 51 last year to see that we haven’t been very successful in getting the word out.

We all know that politicians on both sides of the aisle claim to value the importance of family and are always at the ready to champion family issues. Perhaps if we were able to bring family impact into the equation as we search for long-term, sustainable solutions to the crisis facing the DD world in our state and beyond, we might be able to gain a bit more traction.

As I prepared this blog entry, I remembered a local story from a father of a child with significant needs. I recall it struck me not just because it was heartbreaking, but also because it broached the subject of family impact in a way I rarely encounter:

"Now, for the first time I have little hope. In the not-so-distant future, (my son’s) affliction will likely present us with a crisis for which there is no solution other than the destruction of our family."

Maybe if more people were able to see those words, and truly grasp that when a family falls apart it negatively impacts the entire community, they may not be quite so quick to dismiss our DD issues by assuming they are somebody else’s problem.

Then again, what do I know?


  1. Thank you for the sensitive blog on parents of children with disabilities. As a parent of two children with disabilities, I have experienced total joy in their accomplishments and total frustration by systems that put of up road blocks to support them in achieving their true potential. I have never felt hopeless - I look in my children's eyes and see only hope. I continue to advocate for them - breaking down road blocks. I have learned to be resilent and have a very thick skin. My "job" is not to make friends with systems that do not serve my children well; my job is to do everything within my power to access the supports that they need in order to be all that they can become. I highly respect the professionals that stand with me in this quest. Thank you.

  2. I have been running workshops around CO for the last ten years on helping families find a balance between caring for the needs of their kids with special needs, and caring for themselves, their marriages, their other children. I have not found families unwilling to talk about those issues, but rather unaware of the importance of talking about them. Teaching parents about coping and balance helps put their own needs in perspective with their child's needs, and often starts important conversations about feelings. As the parent of a child with special needs, I have found the opportunity to discuss these feelings, whether in support groups or workshops, have made it much easier for me when I act as my daughter's advocate.
    Excellent post on a critical subject.
    Susan L. Blumberg, Ph.D.
    Family & Relationship Options