One Family’s Story • Loving Tough: When the Family Drives the Team

One Family’s Story • Loving Tough: When the Family Drives the Team

One Family’s Story
Loving Tough: When the Family Drives the Team
Joan and Doug Maynard

When our son was younger and experiencing behavioral problems, we wished for a wraparound program for support. He had had run-ins with the law, a psychiatric hospitalization, was truant from school, and was very difficult at home (to say the least). We had little or no control over him or his behavior. Of course, at times our son could appear perfectly normal or typical, so he was puzzling even to professionals, whether educators, therapists or counselors. Our main therapist commented that we virtually had to do “Zen Parenting” with our son whom he likened to a “rolling hairball.” In any case, the county did not deem him to be at “institutional risk,” and therefore he did not qualify for case management and the related services and support. 

What were we to do? We decided to see what we could do ourselves to assemble a wraparound team. It would be family-driven. Indeed, it had to be family driven because it was never going to happen otherwise. But before saying how we managed to get a team, let us say more about our son and why we were desperate for collective help.

 Joe (not his real name) lives in the moment, does not understand emotional experiences of others, and is unable to modulate his own affect, especially anger. His thinking is categorical and rigidly so. If he had trouble one day with a teacher, that person would be, in his way of thinking, condemned forever. Joe would not entertain that he might have generated or at least contributed to the trouble, or that the teacher might have been having a bad day, or that it was only one incident and not the pattern. Or that the teacher, like us all, has some good points and some bad points. Joe is an either-or person who might decide that he would never go back to class because the teacher, having corrected him on some relatively small thing, was unredeemable. 

Over the years, we learned that Joe had an exceptional need to be in control of his daily life. He would not easily follow or take direction. But we discovered that if we could start from Joe’s own perspective, his own logic, his concrete understandings, we often could make considerable movement in a mutually satisfactory direction, whether it was just getting ready for school or going out to dinner or talking about the day. We called this “getting into Joe’s world.” That always was and still is the proverbial thing that is easier said than done. It is extraordinarily difficult to give up your own expectations, desires, and views and enter in the first place into those of your child. We are the PARENTS, after all!! Getting into Joe’s world means again and again and again letting go of our own feelings of entitlement, our own needs for control, our rights not only as parents but also as the grownups. It means ignoring the reactions of others, including beloved friends and relatives, who observe us getting into Joe’s world and thereby see us as ceding our responsibilities, when in fact this may have been the most responsible thing we could do. It was difficult and still is, and requires the utmost self-discipline

Just as Joe requires having the reins in his own life, he also has an exceptional need for success. When he does not think he can do something, he will not try. When he knows he can do something – he acquires knowledge through osmosis, it seems – he does it, and perfectly. This may be hard to believe, but Joe did not learn to ride a bicycle. Only when he had observed extensively and felt comfortable enough would he mount the bike. Then he took off as if he had been practicing for years! No amount of encouragement, prodding, cajoling, or consequences would get him to try it before he had the confidence to get on the bike and stay upright. This characteristic pervades every new venture he undertakes, which may be why he tries so few and automatically says “no” to most new ideas.

Nevertheless, as a teenager, Joe went on four cross-country group biking adventures, averaging 80-90 miles a day for three weeks. Each trip was a 1500-mile journey. Joe is strong and also adept mechanically, so he was a good rider and given the chore of caring for other bikes. His unusually successful performance on these bike trips raised his self-esteem immeasurably for weeks after they were completed, and that gave us further insight into his need for such experiences. Because of Joe’s emotional make-up, however, the lead-up to these trips was sheer torture. That’s a story for another time, except to say that every year for four years, his inability to handle usual pre-travel anxieties (the change in routine) almost undermined the very possibility for his own enjoyment and accomplishment.

Our difficulties, then, included knowing how to work with a child whose emotions and emotional understandings were underdeveloped, who demanded uncompromised control over his own life, who required others to get into his world before he could get into theirs, and who desperately needed success but who could sabotage himself at almost every turn. We simply could not handle these difficulties on our own. We needed others, who themselves would be somewhat quirky, or at least trained to appreciate quirkiness. Fortunately, we found those who could perceive Joe’s differences and work with them, if not embrace them. We searched, we called, we were referred, and eventually we found professionals for our team who were prepared to deal with our unusual son. These were therapists who admitted they didn’t have all the answers and who were able to respect us as the experts on our child even when we felt deeply incompetent. At one point the professionals on our team consisted of the county social worker, her supervisor, a community program probation worker, our son’s therapist, his anger management counselor, and his special education teacher. In addition, we gratefully accepted the help of the mother of one of his peers.  This mom saw our struggles, liked Joe, and was naturally talented at engaging him. We also encouraged a mentoring relationship between Joe and a former school playground supervisor who befriended Joe and, after he finished his degree and moved out of state, blessedly stayed in contact by email and telephone with him. Our daughter (Joe’s sister) finished college and moved away when Joe was just entering high school, but she also contributed unwavering love and support. We had family friends whose shoulders we could cry on. 

Tough love is appropriate for some children. It did not work with Joe. We opted for a different strategy: love tough. Our goal was simple: In the face of damage to our home, angry outbursts of invective directed toward us, and what seemed like concerted efforts to prove that he was utterly unworthy, we committed to do everything in our power to keep him home, in school, and on track until he could reach adulthood, at whatever age that would be. He was at high risk for being put in a restrictive environment and we knew that that placement for him would be counterproductive. We insisted, with all our energy, in looking for the often microscopic increments of growth and progress. We insisted on loving him despite it all. We have made many mistakes trying to raise our son but loving tough was not one.

In December of 2003, after our son turned 18, we invited many of the players mentioned above to join us for an entire Saturday morning at our house. We were led by a skilled facilitator and an artist in a process entitled “PATH: Planning Alternative Tomorrows with Hope.” With Joe present, we labored to create a practical, visual and colorful plan. We started with our son’s big vision (goal), and working backwards, determined what needed to be accomplished within a year, six months, one month and the next week if that goal was to be realized. Coaches were assigned for each task with others assigned to check up on the coaches. At the end everyone signed the plan and committed to help our son in the ways they had said they would. 

We are pleased to report that our son accomplished many of the goals on the PATH during the following year: He completed his High School Equivalency Diploma, obtained his Driver’s License, stayed out of further legal trouble, and continued with anger management classes. Although currently unemployed, he did hold a job for seven months, and was able to live away from home. He is looking hard for a new job and we are hopeful. At twenty, Joe has a ways to go toward that elusive goal of adulthood, but we try to forget his chronological age and mark his progress in terms that are appropriate to his unique development and inner spirit. We have seen progress and we are still able to call some of the team members on his behalf. Better yet, he seeks their help on his own. 

It takes huge amounts of energy and effort to assemble a family-driven team, and we are thankful for those who have responded to our sometimes faltering initiatives. They include the psychologist who did extensive evaluation and helped us in therapy sessions of our own to begin to understand our child; the therapists and psychiatrists who took what we knew about our son and worked with that knowledge rather than discounting it, and also were creatively able to relate to Joe in very important ways; the teachers, principals, and special education instructors who didn’t view us as bad parents and worked hard on Joe’s behalf; the social service and juvenile justice officials who saw a good kid even when he wasn’t behaving well; and the friends and relatives who somehow understood what our challenges have been and have given their unwavering support.  Because they respected us, and allowed us to drive the team, we were able to love tough.

Wisconsin Family Ties: Renewed Hope Through Parent Peer Support

Wisconsin Family Ties: Renewed Hope Through Parent Peer Support

By the time a Wisconsin Family Ties Parent Peer™ Specialist (PPS) first connected with Ann, the feelings she’d developed for her son’s elementary school ranged from “hopeless” to “disgusted.” She knew her 8-year old was a sweet and wonderful child, but his ADHD presented challenges during the school day that were met at school with force, seclusion, intimidation, and punishments designed to “manage” his behavior. Over time she watched him become a “scared, depressed, and angry” child, all the more troubled at school.

According to Ann, her renewed hope began with that first call from her PPS.

“She listened, supported, met with me and school representatives, and helped me take my power back,” she wrote, relating her experience. “I felt stuck like I was in a nightmare, [but my PPS] was so supportive, always checking in on us, offering to do whatever we needed. I would not [be doing as well as] I am today without her.”

For a parent peer specialist (PPS), the process usually begins with a call to a stranger, never quite knowing what they might hear on the other end of the line. It might be about aggressive behaviors that have led to school suspensions or involvement with law enforcement and the legal system. It could be about traumatic events and circumstances, like homelessness, domestic abuse, or drug addiction that now engulf an entire family and their way of life.  Or it might be as brief as the one or two-word answer that someone nearly broken by what they have been dealing with has the courage and will to share.

Besides a phone number and brief notes from a referral by the child’s case manager, a PPS often doesn’t have much to go on other than their own lived experience of what life might be like on the other end of the call. Not surprisingly, they can make the sort of personal connection that someone without lived experience simply cannot.

I’m reminded of how powerful parent-peer support can be to a family in crisis every time I receive a report from the field by one of the sixteen PPSs Wisconsin Family Ties has across the state or feedback from parents like Ann.

“Without Wisconsin Family Ties, I do not know where we would be,” one of those parents recently wrote. “Not very many people in the world really understand the pressure a parent of a child with special needs faces.  Having someone in your corner [that] truly understands and supports you means the world.”

Implicit in that statement is something that too often is missed or underappreciated by more traditional, clinical approaches to serving children in crisis. That is, it’s the family, as much as the child that benefits from that deep level of care and support.  That holistic approach is authenticated by a PPS’s own experiences of having been through the same or similar circumstances. Because of that, it usually doesn’t take long for them to translate their familiarity and understanding into the hope and trust needed for progress to begin.

Lived experience doesn’t just make a PPS unique. It makes the services they provide uniquely effective. Research is beginning to show how vital PPS services can be. One study conducted by the Medical College of Wisconsin asked individuals who had received multiple services to rank them in order of importance. By an overwhelming margin, survey respondents identified peer support as the most important service (41%), higher than more traditional services like special education (12%), case management (12%), psychiatry (13%), and psychotherapy (17%).

Earlier this year, WFT surveyed families and found that 86% of respondents indicated that their child’s life was better because of PPS services.  When it came to the parents, 100% indicated their lives would have been more challenging without the support PPSs were able to provide.

That same survey also suggested the importance of PPSs in keeping families together.  Respondents indicated high rates of likely psychiatric hospitalization for the parent (28.6%) and child (23.8%) had it not been for Wisconsin Family Ties’ PPS services.  Avoiding hospitalization reduces the financial burden for families and public mental health systems, supporting the assertion that WFT decreases state and county expenditures.

Perhaps most importantly, the survey also suggested how WFT contributes to saving lives, as 9.5% of parents indicated a belief that their child would have had suicidal thoughts or made suicide attempts without PPS services.

The importance of the authentic connection that often develops between a PPS and the families they serve cannot be overstated. While it may not happen on the first, second, or even fourth or fifth call, it’s that relentless persistence and empathy a PPS brings to the mix through lived experience and enhanced by essential training, that is so vital to breaking through the mistrust and sense of isolation so many families feel after having to navigate complex, confusing, and at times contradictory systems on their own.

PPSs know what it’s like to want nothing more than to protect and care for their children. Perhaps that best explains why they’re so committed to never letting go of the hope that they share with the families they serve.