What about the Parents?

The teacher walked purposefully to the parking lot, saw me and said, “Jason spoke a full sentence today!”

She seemed very proud.  I was cautiously excited and commented, “That is great news. Tell me how it happened.”  Jason’s teacher shared that they were having ‘read aloud’ time in his first grade class.  All of the students were sitting on the floor, except for Jason, who was strapped to a chair (due to low muscle tone, and his tendency to lie down unless seated).  After a few minutes, Jason had said the following: “I want to get up now.” 

Doing my best to remain calm, I dryly commented, “Well, over the years we have learned that if a person is restricted or made uncomfortable enough, they will eventually talk – conquering armies have use that tactic for years.”  She was crestfallen.

I shared that Jason had been speaking in full sentences for a few years now at home, and that he did it without being strapped into his seat.

Sadly, this teacher was recipient of all of my frustration: my long-standing struggle with the school that had repeatedly failed to understand my child and his needs, and a system that had grave difficulty in acknowledging his family’s intimate knowledge of what worked for him.  The child-serving systems are only now beginning to recognize the importance of so-called ‘stakeholder-engagement’, and have inadvertently isolated the families and other lay-supports.  Luckily, there are proven and effective methods to engage families that will be addressed in this article.

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Only modest attention has been paid to the family voice in guiding the theory and practice of child-serving systems, and to the dialectic of family stress and resilience in relation to their care for children with behavioral health and intellectual disabilities. As a result, there may be critical data missing in current theory, research, and practice, which can lead to marked inefficiencies in client care.

NIMH notes that approximately 21 percent of minors have an identifiable behavioral health issue [http://www.nimh.nih.gov/statistics/index.shtml].Our systems of care will be overrun, if we can’t make more efficient use of existing resources.

Early research on families of children with intellectual or behavioral disabilities suggests that these families go through a period of grieving when they learn their expectations for a normal, healthy child will not be met. The research further suggests that families then gradually come to embrace their child.

This generally accepted dynamic may oversimplify a much more complicated process. Families of children with special needs do seem to go through an initial course of grieving, followed by some degree of acceptance. However, other periods of stress and grief may occur throughout the child’s life, especially during times of traditional developmental milestones such as walking, talking, school entry, graduations, etc.

These probably also extend later into life, as the child becomes more independent, seeks work, moves on or into another caring environment, and beyond.(“When You Learn That Your Child Has a Disability”, Carole Brown, Samara Goodman, and Lisa Küpper, Originally published 1992, 2nd edition 2003, Updated 2010)

Friends and family members may not understand the special needs of a child with intellectual or behavioral disabilities and thus may not be able to provide the support often available in families of more typical children. Any activity we would classify as normal, be it shopping, meals out, etc., are infinitely more challenging for the parents of a special needs child.

In fact, parents of children with intellectual and behavioral disabilities often experience chronic disorientation regarding their own expectations of themselves. There are few readily available models for their reference. The mastery of developmental milestones does not match the typical model. Discipline techniques need to be tailored for each particular child, as opposed to the variety of “off-the shelf” solutions for more typical kids. Parents need to modify their expectations regarding compliance from their children.

All of these challenges lead to one imperative: involvement with the social network of support, including educational and behavioral health services, needs to be enhanced.

Yet parents consistently report that professionals do not understand the unmitigated pain of seeing one’s child in distress and having little power to ameliorate it. Is it because these professionals want to protect the prerogative of their chosen discipline? Do they want to be ‘healers’ as opposed to ‘coaches’?

Prior research indicates that families prefer to be equal partners with educators and others. Professionals need to be facilitators, not healers. We need to be ‘medicine on the shelf’ available at the prerogative of the family, not the overarching solution imposed by societal expectations. Professionals are important players in the orchestra, but the parent must be the conductor.

There are proven and effective methods of working with families that result in improved functioning as well as increased satisfaction.

1. Community organizing meetings is rarely discussed in the literature even though it is cited as an incredibly powerful experience for families of children with disabilities. Many of these support groups develop naturally in to powerful advocacy groups that truly raise the bar for all of us.
2. Respite care and other home based support services have brought much needed relief to family members who are in a dual role as a “caregiver” and a “family member.”Families have reported improved functioning and high levels of satisfaction with these services.
3. Trauma-informed practices are at the heart of effective family services. For decades, professionals have blamed parents for their children’s problems. This model of blame and pathologizing families has led to an atmosphere of distrust and stigma, wherein parents feel hesitant to engage helpers for fear of being judged. If we do a better job of understanding that the family and child have experienced trauma, and instead focus our efforts on engaging them safely, seeking out and encouraging their strengths and empowering them to make crucial decisions, family functioning and satisfaction improve dramatically.
4. Strength-based approaches that recognize the uniqueness of each family are essential. “Family hardiness” is a key ingredient for coping, and is often associated with their ability to seek out and motivate social supports. Engaging families in a strengths based model can be as simple as checking in and encouraging some bragging. “What was the best thing that happened this week?” “What are you most proud of today?”  Sadly, many funding systems are set up to bill for problem areas, not ‘strengths exploitation’.
5. Families need to be seen as the experts where their children are concerned, and recognized as full partners in educational and treatment efforts.Trans-disciplinary care is crucial—encouraging people to “invade each other’s discipline silos.”During the assessment phase of any professional service, the practitioner needs to assess what is working for families and not just what are the existing problems.

A few quotes from families regarding their contact with professionals most effectively convey this message:

“Treatment providers can only get better with their ‘treatment technology’ if they are willing to embrace the kind of information that families can provide.”

“Perhaps for other parents, as it was for us, placement of a beloved son or daughter in a residential treatment facility carries with it a sting of disappointment, along with soul-searching of what we could have done better or differently in the past. We are committed to doing everything we can to promote healing and wellness anticipating a productive adult life, and we let those emotions push us to engage as often and productively as possible. We had plenty of questions and felt free to share information with the professionals, gleaned from our own observations and evaluation of our son, reading or other consultative sources. From our perspective, parental engagement is vital and a major part of that includes working closely, openly with professionals at wellness facilities. The goal is long term viability in every setting and a productive, fulfilled adult life in years to come.”

“Any child—or adult, I suspect—who goes through the traumatic experiences that end up necessitating a residential treatment program need, more than ever, the absolute assurance of love that continues– through ups and downs and under any circumstance. With that kind of support, it seems the efforts and counseling have a much better opportunity to take root and.”

Let’s live up to that charge, for the sake of these children and their families.