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 Statement on School Shooting at Robb Elementary in Uvalde, TX

Wisconsin Family Ties Statement on School Shooting at Robb Elementary in Uvalde, TX

Wisconsin Family Ties Statement on School Shooting at Robb Elementary in Uvalde, Texas

Wisconsin Family Ties is saddened and infuriated by the shooting that took the lives of 19 children and two adults this week at an elementary school in Uvalde, Texas.  We cannot begin to imagine the pain parents, families, and the Uvalde community are enduring.  Our hearts go out to everyone affected by this horrific and senseless act.

Mass shootings continue to occur because our politicians refuse to act.  Inevitably, many will blame mental illness.  This is wrong.  The United States has no more mental illness than other countries, nor more severe mental illness, yet mass shootings are overwhelmingly an American phenomenon.  It is time we consider gun violence a public health crisis and dedicate ourselves to eradicating mass shootings.

Meanwhile, the words of concern echoing in statehouses and the halls of Congress ring hollow.

As a parent-run organization, we join the growing chorus asking anyone who will listen: Why must we fear sending our children to school?  How many children will have to die before our leaders act?

Wisconsin Family Ties is one of the largest parent-run organizations in the state with the mission of changing lives by improving children’s mental health. For more information please visit wifamilyties.org.

Return to School:  Strategies for Supporting Students.

Return to School:  Strategies for Supporting Students.

Return to School:  Strategies for Supporting Students

By Hugh Davis, Executive Director, Wisconsin Family Ties

With the rapidly-changing COVID situation, school districts are making decisions about mask requirements, as parents are weighing the possible risks of in-person learning against the social, emotional, and educational benefits it can offer.

Despite the precautions and protocols being put in place to protect students’ physical health, we must also be mindful of the pandemic’s impact on our children and the need to protect their mental health. One of the best ways to support youth is to engage with and support their parents. With that in mind, here are a few ways schools can support students’ mental health, regardless of their mode of learning, this fall.

1. Build connections. Learning is enhanced when students have trusting relationships with their teachers and other school staff. Although there are many ways to build relationships with students, one of the most effective is respecting and validating their feelings, no matter how they are expressed. For example, the student who raises their hand in math class and the one who throws the math book across the room are really saying the same thing: “I need help.” Responding to and meeting that need helps build trust between the student and school staff.
It’s also vital for students’ well-being to build connections with their parents. Research has repeatedly shown that involving parents in their students’ education results in better attendance, better grades, better social skills, and higher graduation rates. Providing a welcoming and inviting atmosphere, virtually or in person, can be a great way to begin to engage parents in partnering with you to support their students and their students’ educational experiences.
2. Affirm students and parents. It has always amazed me that we place expectations on kids that we often don’t have for adults, even ourselves. If we’re honest, there are times that we cannot manage our emotions as effectively as we’d like. These moments provide us with great opportunities to model strategies, such as taking a break, that can help reduce the intensity of our feelings. When students have similar challenges, you may want to check in with them after they’re calm, collaboratively discuss ideas that might help them manage their feelings, and encourage them to use those strategies when needed.
In addition to checking in with students, don’t forget that parents are the experts on their kids. When you’re supporting a student with mental health needs, their parents likely have some tips and tricks that can help you develop and maintain a connection with their child. Let them know that you recognize and value their expertise and want to partner with them.
3. Stay engaged. Build time into your schedule for extra interaction with those students who have more intense needs. Building personal relationships with your students will help you to recognize which students may need that additional support. It’s not always the student who acts out who requires more attention. Remember there is a fine line between being reassuring (“I see that you’re unsure about this. Why don’t you give it a try yourself first, and I’ll help you if you need it?”) and being dismissive (“You’ll be fine, don’t worry about it.”).
Include parents as collaborators as you help students work through challenging issues. Ask for their help, reiterating how helpful their experience and expertise will be to you as their child’s teacher. Be sure to check in to see if parents need any additional support as well.
4. Encourage self-advocacy. All of us should encourage students to speak up about what’s important to them, about things bothering them, or share their opinions. The days of “children should be seen and not heard” are (thankfully!) long gone. It can be difficult for students to be assertive with peers and adults, so validate their feelings and commend their efforts, even if they’re awkward. Self-advocacy is a skill, and like other skills, it only improves with repeated practice.

Working together, parents and schools can help students to navigate the upcoming school year successfully – both physically and mentally.
Wisconsin Family Ties is a statewide, parent-run organization that supports families that include children or adolescents with social, emotional, behavioral, or mental health challenges. To learn more about Wisconsin Family Ties and the services they provide, visit www.wifamilyties.org.

 

Enough Already!  Stop Raising Awareness and Do Something

Enough Already!  Stop Raising Awareness and Do Something

Enough Already!  Stop Raising Awareness and Do Something

     by Hugh Davis, executive director of Wisconsin FamilyTies

This past week was designated Children’s Mental Health Awareness Week, as have all first full weeks in May for more than two decades.  Across the nation, there were articles, proclamations, promotions, and events.  Thousands upon thousands of person-hours were spent in planning for these activities.  Is it worth it?

The “awareness” phenomenon is not unique to mental health:  The US Department of Health and Human Services lists 225 national health observances on its website[1].  Over the past decade, however, more people have come to question the benefit of awareness days.  “Days, weeks, months are dedicated to the awareness of different health conditions, often without a clear definition of what ‘awareness’ means, or what, exactly, is supposed to come of it.”[2]

Some researchers are finding that awareness days are not only ineffective, they may also be harmful.  “If left unchecked, health awareness days may do little more than reinforce ideologies of individual responsibility and the false notion that adverse health outcomes are simply the product of misinformed behaviors.”[3]  People who have experienced mental health challenges concur.  Poet and activist Faith Boersma states that awareness-raising without consciousness-raising is “a cementing of the very systems of oppression that have been dehumanizing those of us with labels of ‘mentally ill’ for centuries.”[4]

Over the past twenty years, Wisconsin Family Ties has helped perpetuate this myth of awareness-raising.  We played the game with politicians, policymakers, and providers.  We planned and participated in events, and we received numerous gubernatorial proclamations declaring Children’s Mental Health Awareness Week.

No longer.

Despite decades of awareness-raising in our state, Wisconsin still has one of the worst children’s mental health systems in the nation.  Data from SAMHSA’s (Substance Abuse and Mental Health Services Administration) Uniform Reporting System indicate that Wisconsin’s children’s mental health system ranks 48th among all states.[5]

If improvement doesn’t follow awareness, then what do we do?  “To move the needle on the issues we care about the most, research and experience both show that we must define actionable and achievable calls to action that will lead a specific group of people to do something they haven’t done before.”[6]

Let’s change the game.

We believe it’s time to reimagine human services.  We envision a children’s mental health system that provides services and supports of sufficient duration and intensity to alter the trajectory of Wisconsin’s most at-risk youth permanently.  We see a system aligned with research on the “social determinants of health”[7] instead of the “medical model,”[8] which has failed to produce promised outcomes.

We want to ensure that we never forget the “human” part of human services.  We want a children’s mental health system built on a deeper understanding of children and families and less judgment, a system that views “relationship” as a primary intervention.

From this day forward, we dedicate ourselves to making this vision a reality.  We will no longer participate in awareness days – just meaningful, focused, intense action to transform our children’s mental health system.

(updated 4/10/24) If you’re interested in that same vision for Wisconsin’s children, we invite you to join us. Drop an email to, Wisconsin Family Ties at info@wifamilyties.org, and let’s get going.

[1] National Health Observances | health.gov. (2021). US Dept. of Health and Human Services. https://health.gov/news/category/national-health-observances

[2] Beck, J. (2015). What good is “raising awareness?” The Atlantic. https://www.theatlantic.com/health/archive/2015/04/what-good-is-raising-awareness/391002/

[3] Purtle, J., & Roman, L. A. (2015). Health awareness days: Sufficient evidence to support the craze? American Journal of Public Health, 105, 1061–1065. https://doi.org/10.2015/ajph.2015.302621

[4] Boersma, F. (2021). Mental Health Awareness Month:  A dissent.  http://www.mhawisconsin.org/faith-boersma

[5] Ranking based on nine indicators; four on service rates to children with SED and five from consumer (i.e., parent) surveys.  SED stands for “serious emotional disturbance” (a phrase the author detests) and is defined as “the presence of a diagnosable mental, behavioral, or emotional disorder that results in functional impairment which substantially interferes or limits the child’s role in family, school, or community activities.”  States are required to submit annual data through SAMHSA’s Uniform Reporting System.  Though not perfect, the Uniform Reporting System represents the best data available:  There is no other surveillance system regularly collecting similar data from all states.

[6] Christiano, A., & Niemand, A. (2017). Stop raising awareness already. Stanford Social Innovation Review. https://ssir.org/articles/entry/stop_raising_awareness_already

[7] Social determinants of health are the non-medical factors that influence health outcomes.  Research has shown that these social, economic, and environmental factors have roughly twice the influence on overall health outcomes as clinical services.

[8] The medical model is a school of thought that mental illness derives from biological factors rather than a complex set of biological, psychological, social, behavioral, and environmental factors.  The medical model led to the belief that medication is primary intervention for mental health issues.

WFT Testimony in Favor of SB 527

WFT Testimony in Favor of SB 527

Testimony in support of SB-527, Improvements to the Restraint & Seclusion Law
Hugh Davis, Executive Director Wisconsin Family Ties

Senate Bill 527 is the culmination of dozens of hours of constructive meetings between education stakeholders, including families, advocates, the Wisconsin Council of Administrators of Special Services (WCASS), the Wisconsin Association of School Boards (WASB), the Wisconsin School Administrators Alliance (SAA), and the Department of Public Instruction.

The bill before you today primarily consists of technical changes based on data collected since the current state law on the use of restraint and/or seclusion in public schools went into effect in 2012. SB-527 provides much-needed clarity on what does and does not constitute an incident of restraint or seclusion, when such incidents need to be reported, how they need to be reported, and to whom reports should be sent.

The bill also requires that principals and staff involved in such incidents meet for debriefing. The research on restraint is clear: The moment these techniques are used, the likelihood of injuries to staff and children rises significantly. Debriefing is recognized as an effective tool to prevent future incidents of restraint and/or seclusion.

Finally, SB-527 increases the emphasis of training requirements on de-escalation. The data collected and analyzed by Wisconsin Family Ties and Disability Rights Wisconsin show that the number of incidents of restraint or seclusion remained static over a three year period, at approximately 20,000 per year, and were disproportionately applied to elementary students with disabilities. All of the aforementioned stakeholders were unified in their belief that we can and should find and adopt better ways to meet the behavioral needs of these vulnerable students. The clarifying changes in SB-527 will help school staff, administrators, and educational stakeholders do just that.

Wisconsin Family Ties strongly supports SB-527, and urges its passage in this committee and the full Senate.

WFT Testimony On SB527 Restraint & Seclusion 2019 11 19 (PDF)

We Need to Do Better on Seclusion and Restraint in Our Schools: Why I Support SB 527

We Need to Do Better on Seclusion and Restraint in Our Schools: Why I Support SB 527

Everyone in Wisconsin wants our children to be happy, healthy, and successful. To get there, we need to do better when it comes to seclusion and restraint in our schools. SB 527, a new bill introduced at the Capitol in Madison on October 25, will help us reach that goal.  (See the text of the bill here, and more information from Wisconsin Family Ties here.)

It’s so crucial for parents to share the stories of their children when they are not able to share for themselves, either because of disability or age. I share my son’s story in the hopes that this will help change happen for him and the other children that experience seclusion and restraint.

My son is in third grade and has ADHD, autism, sensory processing disorder, and vestibular issues. He has an IEP, and there are many things about school that are challenging for him.

My son’s experience with seclusion and restraint began in kindergarten, and continued in first and second grade. He has already been secluded over 20 times and restrained over 27 times by the end of 2nd grade.

I didn’t learn till my son was in 2nd grade that schools were supposed to keep incident reports of each seclusion or restraint.  I only found out when I asked due to injuries my son had sustained during restraint!  They were supposed to tell me that a report was available, but they never did.  Unfortunately, now that I ask for the forms every time (and went back and did an open records request to get all the ones I didn’t have), I’ve found restraints happening repeatedly on and off for an hour!

My son has been restrained and secluded for incidents that did not come close to meeting the standard in Wisconsin law of “clear, present, and imminent risk” to physical safety. These incidents included things like running around the room, kicking off shoes, throwing crayons, tearing up papers, and using inappropriate language.  Why would we hold a child down for having a sensory episode?

I keep advocating for my son when it comes to restraint and seclusion because I worry about what this is doing to him in the long term.  I used to manage multiple group homes, and I could tell when a resident had been secluded or restrained. I noticed a pattern with the clients that sought out negative attention by hitting, spitting, biting, punching, and kicking that they had been restrained throughout their lives prior to coming to the group home.

SB 527 would make a lot of improvements to our state’s law on seclusion and restraint in school.  And by improving the law, it would help improve the lives of many children with disabilities and their families, since most of the seclusions and restraints involve students with IEPs. I want to talk about two of the improvements in particular.

One thing the bill would do is to require districts to report seclusion and restraint data to DPI, rather than just to the school boards.  Parents need to know what is going on in their district.  And DPI needs to know about the data from each district because they could provide critical support to districts where the numbers seem high or have jumped up.  Data helps track the trends and can show if training and support is needed.

Another helpful change is that schools would have to automatically send the incident reports to the families, rather than just having to tell them it exists (which is a step that gets lost too often). Parents need to see the report and details to determine how best to support our children in order to be equal participants. These reports are also critical to have in the event of injury such as scratches, bruises, cuts, etc., which has happened too many times to my child.

I believe that everyone’s goal is to do what’s best for our children as they grow.  This bill will help us get to that goal, and I hope you’ll join me in letting your legislators know to support it!

—  Amber McGinley