Monday, February 20, 2012

Taking Care of Mercedes and her Mother- a Cautionary Tale

Mercedes is ten years old. Her developing brain was affected in utero by medications that her mother was taking. She experienced neglect and domestic violence while growing up. She has been in several placements and received various episodes of treatment. `Her mother, Maria, who also has three other children, has remained committed to her and has been involved in her care. Mercedes was placed in residential treatment, and she and her mother were working on reconnecting. Meanwhile Maria is trying to manage her job as a cleaning woman, caring for her three children at home, and taking some courses to become as nurse’s aide. This is a dream she has had for a long time and she is excited to be making progress.

In the program, Mercedes was one of the more difficult residents. She quickly became extremely agitated when her needs were not met immediately, and was often severely violent with both staff and other residents. The program was helping her by having a single staff assigned to her. Whenever that staff saw early signs of dysregulation they would help Mercedes use sensory interventions, physical activity and distraction to avoid a major episode. Mercedes was also on several medications. In therapy Mercedes and her therapist would go for walks, complete puzzles, use art, and clap with music to give Mercedes experiences of regulation in the presence of a positive adult and to build and regulate her lower brain. Mercedes does want to learn how to stay calm, and she feels bad afterwards when she hurts someone. Her mother Maria was attending regular family therapy and taking Mercedes on short visits. The focus of these was to support Maria and Mercedes in having some enjoyment and positive experiences together to rebuild their bond. This combination of intensive treatment was beginning to work, and Mercedes was now occasionally noticing her own beginning distress and herself asking to use her crisis kit. She and her mother were just starting to practice some skills she could use at home.

However, the current thinking in child welfare is that youth under 12 should not be in residential treatment. So, Mercedes was discharged home, and many supports were arranged for the family. Since then, she has been unremittingly violent, beating up her siblings and sending a child in one of her programs to the hospital. Maria has arranged for the siblings to stay at her mother’s for the weekends so that Mercedes won’t hurt them. Maria herself is exhausted and hopeless. She has had to drop one of her courses and is finding it difficult to complete her work in the one she continued.

What went wrong?

I have to warn you here that my understanding of what is needed to help has become somewhat radical, as you will see through my comments.

First, as Mercedes left the program, her mother stopped her medications. She did so because she believed that her pediatrician had told her that these medications might lead to diabetes. Maria’s own mother has diabetes, and Maria has seen firsthand the problems it causes. She doesn’t want this for her daughter. Maria explained to the unit psychiatrist that she planned to do this, but he did not alert anyone.

Maria and Mercedes were given generous help as Mercedes was discharged home. They were given an in-home team of a therapist with behavioral training, a parent aide and a psychiatrist; Mercedes was enrolled in a therapeutic after school program with a therapist, family therapy and a psychiatrist; and Mercedes attended a special ed out of district school with special ed teachers, a therapist and the possibility of a psychiatrist. Yet all this help wasn’t enough.

So, a ten-year-old child who cannot utilize verbal therapy now has three therapists. These therapists have different theoretical understandings and have not spoken with each other. Furthermore, Maria is expected to cooperate with the in home team and have family meetings with them. They are suggesting that she create a sticker chart through which Mercedes could earn little toys by not being violent. Maria created one with the therapist, but she usually forgets to fill it out. If she does fill it out and does not give Mercedes one of her points, Mercedes becomes furious and another rageful episode is triggered. So when she remembers it at all Maria usually gives Mercedes all her points. Maria feels bad about this- it feels like just one more way she has failed Mercedes and been a bad mother, as she thinks she has been all of Mercedes’s life.

Maria is also expected to attend family therapy at the after school program. Well, at least this sometimes includes a meal. But in the therapy she usually hears a long description of what Mercedes has done wrong that week. Maria feels awful that her daughter sent a child to the hospital. But she has no idea what she is supposed to do about it. She can feel it coming that this program is going to kick Mercedes out, and then what is she supposed to do in the afternoons? She can’t quit her job but knows Mercedes cannot be left alone with her siblings.

And school… that’s just another place that calls her with stories of Mercedes horrible behavior. All these people tend to blend in her mind anyway and she can’t usually remember their faces.

So what would be better?

Prior to Mercedes discharge there should be a meeting of all the service providers. In this meeting, it would be flagged that mother is against medication. The providers would decide which psychiatrist will take over the case. That psychiatrist will meet with Maria and respectfully explore her concerns about diabetes. The truth about any connection of the medications with diabetes will be explored, and a plan will be created that does not involve Mercedes going off all meds just as she makes a major transition.

The therapists will decide just what each of their roles is, with both Mercedes and mom. What treatment will be most helpful for mom? How can we avoid overstressing her with demands that she attend various meetings?

Equally important, the team will agree on their approach to Mercedes. Preferably they will all agree on a single message that all team members can use in their work, such as, we are working on ways to calm yourself down when you are upset so that you stay safe and don’t huts anyone else.

I do not think sticker charts are any help at all in this situation. If Mercedes knew how to act better she would. Instead, the in home team can be very valuable in helping Mercedes practice her calming strategies in the real life situation. Ideally, one of the therapists will make a chart with Mercedes about things that help her stay calm. This chart will be shared with all team members and they will all use it. Mercedes will have tools, such as a sensory kit, in all parts of her life and the same help from all her providers to use it when she starts feeling agitated.

Mercedes has a very troubled relationship with her three siblings. She is very angry that they got to stay with their mother while she has been out of the home. Plus those siblings have their own problems and often say and do things they know will agitate her. Here too is an important role for the in home team. They can do activities with Mercedes and her siblings, perhaps one at a time, and be there to avert arguments and violence. The activities should be short at first and very pleasurable to help build a bond between these children.

Let’s ask Maria what would really help her. Maybe some community activities could be found for the other 3 kids so that Mercedes and Maria have time together. Maybe Maria needs some time on her own to do her school work- can the in home aide take care of all the kids for an hour or two, using that time to work on their connection?

One therapist could start an email list or list serve so the each provider writes about what happened in their segment every day and all the providers read it. This will help create a cohesive team. It would be especially important to share all positive events and successes.

The keys to the intervention being successful and to Mercedes being able to stay home are:

• Coordination, communication clear roles and a mutually agreed approach among the team

• Medication management that is respectful towards mother and addresses her concerns

• Listening to the family and doing what actually helps them instead of what further overwhelms and demoralizes them

• Physically based activities for Mercedes in which the experiences and practices bodily regulation

• An emphasis on activities that increase fun, connection and joy between the family members.

It is not just the quantity of help that we give people that ensures success. It is the well planned, respectful and coordinated help.

And wouldn’t it be great to discover that Mercedes had been able to stay home and that she was calmer a year later?

1 comment:

Kathleen Benckendorf said...

Unfortunately, sticker charts and lack of communication are frequently the standard of care and training that parents have to deal with. :-(

Love your blog. Hope to meet you at the CALO conference in April!