ilitiesThe information given me by various professionals who have repeatedly evaluated my daughter is the biggest issue that I face in my life. In order for me to resolve my issue I need to explore whether my issue lies with the professionals and the process of evaluation, or with me not wanting to accept that my child is disabled.My six and a half year old daughter, Malia, began to show signs of delayed development at age eighteen months. Her speech started to regress and there were also behavioral signs that were significant enough for me to ask our doctor for advice.
When was not concerned to the point that I was I contacted Multnomah County Developmental Disability department and requested that they evaluate Malia. They agreed that that were delays, and made a referral to Portland Public Schools Early Intervention Program for special services suchas speech therapy, occupational therapy, and other early learning resources for children with disabilities. I also switched Malia to a pediatrician who immediately referred her for a full-scale evaluation at Oregon Health Sciences University (OHSU) where they have an evaluation clinic for children with disabilities. At this point Malia was two and a half years old and this is where I began to take issue with the evaluation process.
The process was a one day period where up to twelve doctors, psychologists, speech pathologists, audiologists, and occupational therapists each spent thirty minutes with Malia, evaluating her based on standard tests. After six hours with Malia, the professionals gathered together and discussed their conclusions. After their discussion, they called Malia and me in. They told me that their diagnosis for her was “a mild conductive bilateral hearing loss, language disorder and borderline intelligence.”That was all the information they gave me, other than to tell me that Malia’s pediatrician would receive a report and follow-up accordingly. No special suggestions or support were offered to me or to Malia.
I did not know the exact meaning of “borderline intelligence” at the time, so I assumed it meant her intelligence was not above average but not below. I found out at her second evaluation two years later that it means low intelligence, bordering on mental retardation. I followed up on the hearing loss with an Ear Nose and Throat (ENT) doctor and Malia had her tonsils and adenoids removed, her ear drums pierced and drained and “PE tubes” put in.
The ENT doctor told me to expect a full recovery immediately following the surgery, including her delayed development.Since the original diagnosis, Malia has been evaluated and re-diagnosed twice as well as having another surgery to correct her hearing that fell below average again. She has more than eight different diagnostic labels including; Autism Spectrum Disorder, Attention Deficit and Hyperactivity Disorder, Low Cognitive Functioning, Pervasive Developmental Disorder, Mild Retardation, Language Disorder, Communication Disorder, etc…Most recently I was informed that she has had two years of developmental growth in one year; however, her I.Q.
has dropped from 74 to 70. At a recent OHSU evaluation, the entire staff agreed that she was developmentally behind one and a half years. During the same visit the staff psychologist said that she would never live independently. This makes me question the staff’s credibility. Malia is only six and a half years old. She has, by their test,made significant progress. How can they predict where she will be in another twelve years?In reading de Bono’s Thinking Course, where he recommends using Plus, Minus and Interesting (PMI) categories as a tool, by spending three to four minutes directing attention toward the Plus, Minus and Interesting points of subjects on the mind, I found that this was a positive exercise for me to do with my issues regarding the evaluation and diagnosing of the children.
The following is the results of my PMI:Plus- being labeled makes her eligible for special school services and Social Security/Disability, OHSU examiners do their best with the materials and information they have to work withMinus- the diagnosis is made based on minimal time spent with Malia, the tests are very broad, not specific to Malia, no explanation, support, or follow-up offered to parents or children, no “bedside manner”Interesting- would be interesting to test a subject over a thirty day (outpatient) time period, to develop a panel of parents who have been through the process to give feedback and to encourage improvement in examiners’ delivery of the diagnosisAnother tool de Bono refers to is Alternatives, Possibilities, Choices (APC). He recommends spending ten minutes on this exercise. De Bono states that doing an APC means making a deliberate effort to generate alternatives at a particular point. The APC I performed has been equally helpful. The following is the APC:-spend more time observing, not all in one day-implement a parent support network for families receiving a diagnosis, match families based on similar diagnosis, train parents primarily focus on a parent receiving first-time diagnosis-examiners could pay more attention to parent and teacher comments/concerns-more direct follow-up with patient’s family, teachers, doctors, etc.-explore child’s strengths & learning options more than focusing on labeling The results of the PMI and APC were quite similar and gave me an opportunity to focus on the points of the evaluation process. If Malia had not been labeled, she would not be eligible for special school services or SocialSecurity/Disability aid.
I would be financially unable to care for her in the way that I do. I would have to work full time and would not be available to her as I am now. I also realized in doing the PMI that the examiners do the best they know how to do with the materials and information that they have. The negative list I came up with included the examiners spending minimal time with children and giving them a life-long label. This can be extremelystressful for families.
In my case, when I understood what they were telling me, I began grieving for her future and all of my dreams I had for her that would never be met. I became unavailable as a parent, and I lowered my expectations for her. This was counter productive, and could have been avoided. Offering no support nor follow-up to families to learn how to cope with the label causes much unnecessary pain and grief.The tests themselves and they way they are given are not specific to the children being tested. An example of this is when Malia was being given her I.Q.
test. This occurred at the end of the day, after she had been tested from nine that morning. The psychologist said, “Malia, name two things with wheels.” She replied, “Two.” I was observing through an observation window, and it was not apparent to me whether she had made a statement or was repeating “Two” as a question, but the examiner marked it down as wrong without commenting.
He then asked her what “courage” was. I feel, courage is a very complex concept for even a highly intelligent six year old to comprehend, much less define. She was also asked why we brush our teeth. She said to clean them. This was also wrong because she was supposed to refer to preventing cavities.
The test continued like this for some time. When the psychologist and Malia approached me afterwards, I told him that I felt as if she could have done better if the questions had been worded differently or had allowed more than one correct answer. I told him to watch, and I looked at Malia and said, “Malia, what has wheels?” She said, “A car.” I asked, “What else?” She said, “A bicycle.
” The psychologist advised me that one question would not change the outcome of the test. It is hard for me toaccept that, based on these tests thus administered, my daughter is somewhat retarded. She has many skills that were not demonstrated in these procedures. Exploring the “Interesting” category suggested to me the idea of evaluating children over a thirty day time period. This would enable the evaluators to see a broader range of children’s skills. The problem in this would be the time involved in transporting and getting time off from work and school.
An option would be having the examiners go to the child’s school to perform tests there when possible. It would also be interesting to develop a parent panel, with parents who have been through the process, to give feedback and point out to the professionals more helpful and effective ways to interact with parents.The APC elicited a more thorough response from me than the PMI because it required that I spend more time on it. I came up with some of the same ideas as with the PMI exercise and a few other ideas as well.
One item on my APC list was having the examiners pay more attention to the child’s teacher and parent comments when diagnosing a child. This would help the examiners have a more complete understanding of the child. Another idea that I listed was to have the professional spend more time exploring the child’s strengths andpossibilities in order to aid in designing a special program in which the child would thrive. I have spent the past four years being angry with the clinic at OHSU. I can truly say that all of this channeling and exercising (PMI and APC) has helped me to have a better understanding of why the testing is as it is, how it affects us, and most importantly, that a closed mouth does not get fed. If I want changes, I now understand that I have to speak up and talk to someone who can do something about it. Now that I am more clear about the process, I can offer something positive to help other families avoid the pain and anger thatI have endured.
Knowing this, and feeling good about the road ahead, is a very good place for me to start. The most important realization for me is that Malia is still Malia, regardless of any label they placed upon her. In conclusion, whether or not I make a difference in modifying the evaluation process, I know that Malia is and always will be the same wonderful child she has always been.