In the United States every child who is classified “special needs” is entitled to new evaluations every three years. My middle child (with autism) just had hers done this past month. Every time this comes up I’m hopeful and fearful at the same time. Hopeful that she will have gained some ground on her peers, fearful that she has not. When the big envelope comes in the mail with the reports I always have to catch my breath before opening, and make sure there’s a tissue box close by.
How many evaluations your child receives depends on what their issues are. My daughter gets three: educational, speech, psychological (as well as a medical evaluation from a developmental pediatrician which we haven’t had done yet because her appointment isn’t until May). All these evaluations are done at the expense of the school district – we pay nothing out of pocket.
For the most part I have never learned anything new from reading ANY of the evaluations she’s ever had. And really this is the way it should be. I know my daughter. She attends an excellent school and I have regular detailed communication with her teacher, so I shouldn’t get any surprises. What is always so painful about reading these evaluations isn’t the new information gleaned, but the words in black and white. The evaluations are conducted by trained professionals, who because they DON’T know her, are able to be more objective about her performance. Reading them describe her serious deficits in official jargon feels like a punch in the gut. And with this round of evaluations, it is becoming real for me that for as hard as she is working, she is actually falling farther behind her peers. The older she gets, the more pronounced her autism appears.
I’m still trying to bounce back from the hit I felt when the reports came in the mail last week. Here are some of the pieces that have been the most disturbing and painful:
from the educational evaluation summary –
“displayed below average ability in oral language, total reading, basic reading, reading comprehension and fluency, and written expression.” “scored in the low range in mathematics and total achievement… scored in the very low range on math fluency.”
“maintained significant weakness in the areas of oral language, reading and reading comprehension, mathematics, math fluency, and written expression.”
from the speech evaluation summary –
“presents with a receptive and expressive language disorder characterized by below average auditory comprehension, semantics and syntax… also presents with below average problem solving and reasoning skills. Informal observation during testing indicates that … has difficulty expressing her thoughts completely as a result of below average vocabulary or impaired expressive language.”
and from the psychological evaluation summary –
on the WISC-IV… “overall performance is classified in the ‘Extremely Low’ range of intellectual ability. ”
Verbal Comprehension – “falls within the ‘Borderline’ range.”
Perceptual Reasoning Index, Working Memory Index and Processing Speed Index… “All of these scores fall in the ‘Extremely Low’ range.”
“her knowledge of vocabulary words is very poor and her practical judgment, common sense, and the ability to understand and adapt to social customs is also very poorly developed as compared to others her age.”
“Within the perceptual reasoning area… (her) spatial problem-solving and manipulative abilities are poorly developed. Abstract reasoning and visual information processing skills are also very poorly developed. In addition, her ability to recognize the common features of nonverbal concepts is a weakness.”
“In the area of working memory… (her) short-term memory, sequencing skills, and ability to engage in mental manipulation of auditory information presented to her are very poorly developed as compared to others her age.”
“In the area of Processing Speed…(her) visual-motor coordination, visual scanning ability, and processing speed are very poorly developed as compared to others her age.”
Reading the “black and white” of it has been crushing. I find my grief over her autism comes in waves – I ride the wave fine for a while, then some “thing” will happen that brings the wave crashing down on me, and the pain is overwhelming. These evaluations are always a “thing” for me.
I know that she is much “higher” functioning than some children with autism. I “get” that the situation could be worse, but right now, telling myself that hasn’t been helpful. Because right now a wave of grief has swallowed me up and has me twisting and turning under the water, craving breath. I know the air will come, but right now, feeling grateful is out of my reach. Right now I’m just feeling sad for the present and fearful for the future that “could have been.”
I wish I could end this post with some quaint religious platitude, but the only thing I can preach to myself, that feels completely true, is that I am not alone. God is with me in the wave, under the water, and God will give me breath. Being a person of faith doesn’t mean we won’t suffer, it just means that we don’t suffer alone.