Speaking Up: Coordinating With Providers to Get Needs Met
I could tell by the slump of her shoulders and the droop of her face that my childrearing tips had hit the wrong mark. Animated and engaged just a moment before, Joyce now looked dispirited and exhausted. Overwhelmed.
As a psychotherapist, I am always thankful when clients let me know that something I say or do affects them. I aim to assist, but suggestions can land differently than anticipated. So, I watch carefully for reactions. Some people tell me outright when there is a problem. Others find it harder. However, as with Joyce, the discussion always bears fruit, as it helps professionals hone in on what is really needed and how to align services.
Joyce had sought me out for help managing her two children: a son on the autism spectrum and a daughter diagnosed with Attention Deficit Disorder (ADD) and social difficulties. Resourceful and generally upbeat, she had a lot on her plate. More than plates are designed to hold. A single mother with no extended family nearby, she struggled to balance work and home, to pay the bills while meeting the copious and conflicting needs of her children. Each child attended various therapies and groups and required different styles of parenting. Her six-year-old son functioned best with structure and routines. He wanted to perform the same tasks in the same order each day. Joyce’s eight-year-old daughter operated differently. Restless to experiment and explore, she lost herself in curiosities, and paid scant attention to routines or the needs of others.
The meeting that day focused on the dilemmas her children’s differences created. Joyce felt pulled in multiple directions. She empathized with each child’s position, but their constant and varying needs took its toll. Her patience was wearing thin.
“It’s fine when I am with one kid or the other,” she told me, “then I can adjust to their pace or preferences, and they cooperate. But when we are all together, it’s like an orchestra with no conductor, with at least one of us screaming over the din. Lately, the one screaming has been me.”
I felt confident that a solution could be found. The family contained the most important ingredients for a well-functioning system–a competent and dedicated caretaker, strong parent-child relationships, and children motivated to grow and learn. Maybe with enough twisting and turning, the various parts could mesh.
That’s when I weighed in with some possible strategies and saw her demeanor change.
“I can’t keep up with all the suggestions and demands,” she explained. “Actually, the kids’ behaviors are not the whole of it. It’s also all the professionals involved with our family. Don’t get me wrong, I want the advice, and I want to help my kids as much as I can, but there is just too much to do and keep track of.”
Joyce told me she had meticulously researched every avenue of help that she or her children could access, and put a lot of services in place. Although she valued many of them, the coordination and implementation proved more time-consuming and confusing than she anticipated. Providers offered contradictory advice, or suggestions that would not work, forcing her to advocate and negotiate constantly for her children’s needs.
She listed the services her children received: Individualized Education Plans (IEPs), occupational therapy (OT), speech and language therapy, psychiatry, social groups, equine therapy, and in-home wraparound services. The family spent most afternoons working with one provider or the other. Most of the interventions were valuable, and each one made sense on its own. But piled together, they created a small mess.
At the recommendation of the OT, Joyce had bought sensory equipment, which overtook their living space: weighted blankets, swings, rockers, special chairs, squishy balls. She had also filled the walls, doors, and mirrors with visual reminders: brush your teeth, flush the toilet, slow down, think about others. It remained unclear how much of it actually worked. The children felt so overloaded that they shut out most of the cues and equipment.
The speech and language therapist told her to look for natural opportunities to practice skills with her son. The OT told her the same. With those directives on her mind, part of her brain was always busy, keeping track of the skills she should reinforce and scanning for opportunities. Thank goodness, the psychiatrist only expected her to distribute pills, but even that did not prove simple. Her son reacted to every medication change. When the color of his pill switched from blue to green, he refused to swallow it until she convinced him it was not tainted. That took three days of creative maneuvering.
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Joyce also kept in daily contact with the children’s teachers and attended school meetings at least once a month. She felt those provisions necessary as her children reacted to small events, but did not or could not tell her about them. She also found that without oversight, the school skimped on implementing the IEPs.
Most problematic were the wraparound services. A team of two clinicians came twice a week to work on the children’s behaviors and the family issues they provoked. Although Joyce made clear her children’s diagnoses when she put in the referral, neither of the clinicians seemed knowledgeable about autism or ADD. They were young, newly minted from graduate school and full of ideas that did not map well on to the family’s circumstances. Their first intervention was to create a behavioral chart with rewards. However, neither child could exert enough self-control to earn the rewards, or even to remember the goals. Each day, when Joyce drew the requisite unhappy face on the chart, disappointment and tantrums ensued. Joyce quickly scrapped the plan.
Even though she had not found the in-home services helpful, Joyce kept them, finding some benefit in the company they provided. Unfortunately, workers turned over frequently. The team underwent two personnel changes in six months. Joyce felt the strain of meeting new workers, orienting them to her family, and then preparing her children to say good-bye. She felt like a trainer for young therapists. With eight years of parenting special needs children under her belt, she knew more than the young graduates who had never been parents.
Once Joyce completed her list, I understood why she reacted to my suggestions. She did not need more advice; her days had become disorganized by too much of it. Life felt like an orchestra with no conductor because everyone, all the providers including myself, played to their own tune without harmonizing. The result was a discordant blare that drowned out the utility of any intervention.
Joyce thus found herself in an impossible situation. Split in too many directions, and worried that she was not living up to expectations, she could not exert control over her life, or feel competent as a parent. While at first she thought her children’s behaviors were the biggest hurdle, necessitating more and more help, in fact, the opposite was true. Home reflected the chaos of her services. If the ensemble of providers could be streamlined and synchronized, Joyce and her children would likely experience fewer demands and conflicts.
In the end, my work with Joyce centered around helping her decide what she needed and what was getting in the way, as well as how to speak up to the various therapists. She stopped the wraparound services and replaced them with the company of friends, who took turns helping out.
She also worked to set up more coordination amongst providers. Monthly meetings were instituted so that everyone knew what everyone else was doing and could adjust their work accordingly. Joyce brought her concerns to the group, which brainstormed ideas and discussed pros and cons before she picked and chose the ones that worked best for her. Amongst the topics for discussion each month was not just what could be done about a problem, but what Joyce could reasonably do.
Providers could tell Joyce what was possible, but only she could decide what was feasible.
Karen Zilberstein, LICSW is a child and family psychotherapist and a research associate at Five College, Inc. in Amherst, MA. She is a co-author of a children’s book, Calming Stormy Feelings: A child’s Introduction to Psychotherapy, and is currently writing a book for adults entitled, Parenting Under Pressure. The book profiles families with different challenges and their struggles to locate adequate resources.
This article was featured in Issue 76 – Raising A Child with Autism