John 1:16-17
And from his fullness we have all received, grace upon grace. For the law was given through Moses; grace and truth came through Jesus Christ.
Being a person who is well aware of my mistakes and feeling them deeply, I generally take the view point of extending grace to others, knowing that I, myself, am in need of it, too. Sometimes this is hard to do when advocating for our children.
A year ago we took one of our kiddos to a *local, well-known, highly recommended, prominent research and diagnostic facility regarding a comprehensive evaluation for fetal alcohol spectrum disorder (FASD). The doctor was fabulous with our child, compassionate, kind, gentle. He was a little less clear in his communication to us regarding the diagnosis, so I didn't hurry to request the report when it didn't automatically come in the mail. In my mind, unless he had a clear diagnosis to help in guiding a treatment plan I wasn't sure what good it would do to tack on a few possible letters after a child's already long list of diagnoses. The behaviors and challenges we were dealing with were the same regardless of the letters, unless the letters could clearly explain how to best parent, teach, and reach our child. Since our meeting with said doctor was a bit vague, I had no driving desire to have the paperwork in hand to help me at home.
...Until the big kiddos went to the charter school this fall. The school just did not get off to a good start providing interventions or accommodations for our struggling learner, even though we provided a stack of outside assessments and diagnoses prior to the start of the school year. At that point we thought maybe it would be helpful motivation for the school to add a few more letters of disability to the stack in order to provide the right learning environment. Silly me, the right learning environment was right here all along and all those meetings requesting service never did get us anywhere but busy.
Fast forward to November, nine months after our FASD evaluation at the highly recommended specialty clinic. We received the follow up report full of errors on every page. Now, being not-too-competent at computers myself, I made room for transcriptionist error and liberally applied grace to this situation. Liberal grace for the transcriptionist meant that other peoples names (strangers to us!) were substituted in our report as the parents, and our child's name, age, abilities, and handedness were in error at different places within the report, but not entirely throughout. It seemed as though some of the report had been copy/pasted from someone else's file and other parts had been transcribed from our child's records. It took three weeks of phone calls to actually talk to a live person and/or get a return call and I tried the doctor's case coordinator, the transcription team lead, the manager of the department, and even the secretary who kept passing me along to someone she thought might be helpful.
Finally, by the end of December I had communicated in detail every error on the report and was given full assurance that it would be promptly corrected and that we would have the corrected version in our hands soon. I had no idea what the diagnosis on that corrected version would say, but at this point it wasn't really going to matter. The behaviors had largely stayed the same or intensified for the past year, so it was really about faithfulness in this journey, not about finding new tricks in parenting special needs kids with specific diagnoses.
December ended and by mid January some of our paperwork was needing to be renewed for services for this particular child and I began to wonder, yet again, where that report could be. I called again and was given a promise that things would be looked into. A return phone call from the doctor himself genuinely and profusely apologizing was helpful a week after that, but we still did not have any report or any clue as to the diagnosis. Another week later the doctor's coordinator called asking if we had received the report yet. By this time it is pathetic and almost comical how poor the service has been through this institution. Generally, I try to save my emotional energy for dealing with truly critical things here at home, so I patiently and graciously just requested the coordinator to not rely on the "auto send" feature their transcriptionists use and to put a copy of the report in the mail to me herself.
The amended report arrived February 5th. With errors. Most specifically with another child's name in the sentence listing the diagnosis as FASD:Alcohol Related Neurodevelopmental Disorder in the diagnostics paragraph. There were other minor errors also which all contribute to me wondering whether or not this is my child's diagnosis at all.
One entire year after our appointment, and grace upon grace having been applied to this situation, I was finally put in contact with a patient relations representative in order to share my concerns. I prayed mightily prior to my call with her that I would not be angry but that my heart would advocate for our children and family and honor God. I do believe that when we honor God in our communications with others He advocates for us. I know that this woman heard my concerns. It is unfortunate when good facilities and institutions make miserable mistakes like this in paperwork. Paperwork is a bugger. Unfortunately, paperwork drives services for many children with special needs and these services provide necessary supports for families. Without a strong family structure the children suffer.
Paperwork cannot change my child's past or her prognosis. Paperwork cannot change my responsibility to faithfully parent my child or the daily challenges that lie ahead. However, clear and correct paperwork can lead to tremendous support and understanding for families of children with special needs.
*I have purposefully not given the name of this specific medical institution.
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