Tuesday, October 12, 2010

My Child and Me – Keeping Everyone Honest (Or, the Therapists We've Fired)

Jennifer Minnelli, M.S., CCC-SLP

When your child first gets diagnosed with a developmental disorder, you, as a parent, are in a very vulnerable place. Regardless of your area of professional expertise, it's almost as if you start over again, as a beginner. A beginner to parenting, and a beginner to this new world of diagnoses, specialists, medications, teacher opinions, and therapists.

When we started down the road of diagnosis for my quirky oldest child, I was reluctant. It was hard for me to submit to other peoples' opinions, when I felt I knew exactly what was going on with her and how it should be treated.

Also, I felt, I knew the dark under-belly of the world of allied health professions. Several years out in my career, I had already worked in a variety of settings, from public school to inpatient hospital, and everything in between. I had worked for some outpatient facilities that I had to leave, after a few months, in order to uphold my profession's code of ethics. I learned quickly that earning a master's degree in one of the disciplines, like Speech Pathology, and passing the professional exams was only the beginning. A person can spend the rest of their career continuing to grow and learn in one or two areas of expertise, or can be a warm body somewhere, and basically make the same amount of money, and have the same benefits. At times, I observed or came to know about circumstances that either pushed the ethical boundaries, like making the same recommendations for every child, regardless of their needs, or flat-out violated them, like billing for services that never took place. To be fair, I also encountered amazing people who did amazing work, and I pride myself on striving to be one of those clinicians.

Still, when my child was three and the preschool teacher started making noises about a developmental assessment at the local early intervention center, I said no. Reason being, I knew the speech lady who heads up the evaluations, and I knew that she always recommends augmentative communication devices (AAC, www.abilityhub.com/aac/aac-devices.htm), because that's her thing. And while I'm glad that she has an area of expertise, every piece of wood does not need a nail, and every child, especially my hyperlexic, highly verbal three year old, does not need AAC I thought I could do a better job myself, creating good peer-matches for my child and scheduling play dates in which she could practice her social skills while doing physical activities -- like monkey bars and digging in sand -- that gave her body the input it needed to help sustain appropriate social interactions.

But as the years have continued to pass, we have encountered lots of therapists. Some good, and some not-so-good. Here are my reflections on why some people didn't work out very well for my child, and advice on what to look out for. I am using pseudonyms to protect people's pride and privacy.

Never choose a therapist who is learning a new area of expertise, and admits it to you. The therapist you hire should know at least as much as you do, about the population they purport to serve, and needs of your child. When my child was four-and-a-half, I thought it would be good for her to have a play therapist, who also had some training in narrative skill development. I found a therapist, we'll call her Heather, who had been practicing Speech Pathology for years, but was new to the art of Floor Time™ (http://www.icdl.com/dirFloortime/WhatisFloortime.shtml), and was taking a course in RDI™ http://autism.about.com/od/treatmentoptions/a/RDI.htm). She agreed to provide play therapy with an RDI and Floortime approach to my child for a reduced rate, because she was learning to practice something new. 

Heather would come to our house, so I had a pretty good idea about what was going on. She focused the first few sessions on developing the therapeutic relationship by playing simple games like peekaboo and hide-n-seek, and at first I thought this was OK. But then my child, with the repetitive learning style, came to expect that that was what they would always do together, and Heather did not have the skills to extend beyond those games, to activities that would build narrative skills and perspective-taking. Plus, she had the nerve to call me on the phone, and tell me that my child was far more severe on the spectrum than I had thought, and that peekaboo was a necessary part of the developmental continuum for my child. As if I hadn't spent the first two years of my child's life playing peekaboo with her. See ya!

Just because the school system offers you free services, it doesn't mean that they are the right services for your child. When the public schools evaluated my child, they came up with the murky diagnosis of borderline high-functioning Asperger's, with fine motor delays and sensory processing disorder. They could not give her a language or problem-solving test that she could not sail through because of her high language and problem-solving ability. And yet, they wanted her to qualify so that she could get I.E.P. Services if needed, once kindergarten started. The occupational therapist (OT) who evaluated her said that my child would benefit from 30-45 minutes per week of occupational therapy, in a sensory integration (SI) environment. However, the department's lead OT said that the schools could not offer 1:1 therapy because that was not the system's service delivery model. So, my child was funneled into “group,” which was a hodgepodge multi-disciplinary group with several children and therapists that functioned like a mini-preschool. 

We went for a few sessions, until I figured out that there was no sensory integration going on, the therapists did not know what SI is, and there were several children in the group who were modeling behaviors that I did not want my little parrot to start mimicking. And then the therapists complained to me about my child's distracted behavior in an almost-venting fashion. Did they do this because we are colleagues and they thought I could take it?? How could this be an adaptive, therapeutic setting for my child? That was that. We did find a fabulous SI clinic (www.aplacetogrowtherapy.com) and my child still enjoys going there to this day.

We owe it to ourselves and everyone else to make sure that the schools know what to do with no-man's-land children like mine. I am fortunate to be able to pay out of pocket for SI services, but not everyone is able to, and those services should be available and the schools should know how to provide them!

Don't fall for snake-oil treatments. If it seems too good to be true, it probably is. We have done many alternative healing therapies: Reiki, craniosacral, acupressure, special diets, etc., and I would say that the best thing that has come out of them is that my child feels cared for by many loving and interested people. There has been no cure to date, and, at this point, I'm past wanting a cure for my child. 

We went to a wonderful and caring person who is an allied health professional, and is also trained in Craniosacral therapy. It was good for a short stint, but then, I got really fatigued by this person. Even though she loves my child and did a great job, it felt like she needed me to tell her how dramatically improved my child was in all of these areas, so that she could keep feeling good about herself as a therapist and a healer. And I just can't get caught up in helping her maintain her self-deception. 

We have good days, we have bad days. Some days we eat the gluten-filled pizza crust. Some days I forget to give my child the Dr. Bach's Flowers drops and the cod liver oil. I can't get pulled into this trap of thinking that if only I did these certain things, my child will magically be neurotypical. And I don't want to be blamed by a therapist because they could not fix my kid.

Trust your instincts. We tried one session with a speech pathologist. She was good, and qualified in the pediatric population. However, she spent the hour asking my child questions, making her sit down, and directing the session. Then, after it was over, she asked me, “What are your child's play skills like? Or does she even play?” Do you hear something? That's the sound of the door closing. Time for me to go out and play with my child.

I used to be a door mat. I let boyfriends walk all over me in my twenties, before I found my kind and wonderful husband. But now that I have a child on the Autism spectrum, I am a worthy opponent for anyone: teacher, doctor, specialist, school administrator, politician, neurotypical child on the playground. We owe it to our children to expect the best, and to find the best specialists for them. Specialists owe it to everyone else to be honest about their areas of expertise, to ask for more training, or go find it and pay for it themselves. And, finally, to admit when something is not in your area of expertise, and to refer the parent on to another expert. Here are three perfectly acceptable answers to parents:
  • “Yes, I know how to treat children with fine motor delays. I have twelve years experience treating kids in a clinic setting. Here are some references.”
  • “Yes, I have some experience with social thinking deficits and am attending a conference in two weeks to learn more about them. Tell me more about your goals for your child and his areas of need.”
  • “I'm sorry, but the only experience I have with that population dates back to my graduate school years; however, I can refer you to Susie Q., who specializes in children like you are describing.”
Every discipline has a code of ethics. Here's mine, from the American Speech-Language-Hearing Association: www.asha.org/docs/html/ET2010-00309.html. Lately, I've been thinking about the Hippocratic Oath, “Do no harm.” I recognize with all of the issues in medicine, that may be the best we can hope for. What could be a good oath for professionals like myself? I am really interested in hearing others' responses to this.

In the end, when you are working in a profession that touches children and families, it's not enough to say that you love children and that you want to work with children. Children and their issues are but 1 part of the equation. When you work with children, you have to know how to talk to the adults that are their parents, you have to acknowledge that there may be a grief process going on, and have some understanding of the family system. You have to speak with other disciplines, and integrate their ideas and opinions. Finally, you have to realize that it's not about you, it's about the children and the families that you are serving.