A Side Note About Assessments
Time would show that Jessica was/is developmentally delayed. We know that. But we still disagree with many of her early formal assessments.
As easy-going as I am, any time I heard Jess was due for an assessment, I got uptight. The assessments were necessary, but I did not like them. Based on variables available to the evaluator, outcomes can be quite subjective. The experience, intuition, and common sense of the evaluator is one such variable. Input from families is also a critical variable.
Another important factor in the assessment process is whether or not professionals treat families with respect. People are different, families are different, intellect is different, but every family deserves the courtesy of being heard and knowing what they are saying is being listened to.
That is how I approach my nursing practice. Some people may not have much medical knowledge, but they know a lot about what’s happening to themselves or their loved ones. So much can be gleaned from listening to families.
I resented being treated as if I did not know what I was talking about just because I am the parent, or because I did not have a specific title behind my name. I did not want to be dismissed because someone thought I would not understand or they thought I was in denial. If either of those were the case, then it should have been used as a teaching moment.
We had plenty of these experiences. Over and over again. Our experience with our in-home assessment in Texas was one of those. Our knowledge of assessment types and methods were very limited. But our gut told us things were not accurate. I do not remember a whole lot about that assessment. I do not know how many adaptations or accommodations were made for her vision, but from the sidelines it seemed unfair. I remember how upset Mom and I were when it was over. They had such a simplistic and blasé approach it was maddening.
Does this matter now? Yes. Absolutely. It boils down to expectations passed on from year to year, professional to professional. When a professional reads a report, do they realize the previous assessor could have been a newbie? Someone with no common sense? Someone that just did not get it? What if the next professional was really busy and did not have time to care or look in-depth and form their own opinion? How many professionals blindly go with what they have read from a previous assessment and take it from there? What this leads to is a self-fulfilling prophecy.
I believe this was a scenario with Jess multiple times. Did it affect her long-term progress and outcome? I absolutely believe so. Am I bitter? No. That wouldn’t be healthy. Plus, that is my opinion, not fact. But it was our strong opinion that drove the advocacy. It’s what kept us pushing for things year after year. I still believe in Jess. I still believe in her ability to learn. Just because the education system has an arbitrary age at which students age out does not mean that their window of learning is over. Jessica was still on the upward curve of her learning curve when she aged out. But, sadly, I cannot devote 7 hours per day to teaching her. I have to earn a living, run a household, pay the bills, put food on the table, etc. So, she is what she is, our lives are what they are and here at the homestead we consider ourselves lucky to have one another. She is a gift and a total blessing, and I can’t imagine life without her.
Next: Improved Vision!
If you are new to Autism After School, Jess is an autistic and visually impaired young adult. I am telling our story to help other parents and professionals learn from our journey. My hope is to help others better prepare for experiences within the educational system and the transition to adulthood.