I lost my complacency Wednesday.
It happens so subtly that you scarcely notice it happens. Over time, the unacceptable starts to become the norm; in the pursuit of picking your battles, your leniency catches up with you.
Gabriel's school situation has left me disquiet since the beginning. Switching from the idyllic environment of Preston Smith to the uncharted waters of AISD was jarring. Everyone was new and unknown, and my inexperience was apparent.
Let me lead with: my goal is and always has been getting what is best for Gabriel. I believe that is (or at the very least, should be) the primary motivation for everyone in the ARDs.
For the sake of tedium for the uninitiated, this post will be peppered with explanations. I have said it before and I am sure I will say it again: Autism is a disorder of acronyms.
Gabriel is still testing within the perimeters for a diagnosis of Autism Spectrum Disorder (ASD). He is on the severe end of the spectrum, as he is (as of this time) completely nonverbal and without a consistent form of communication.
ARD stands for Admission, Review, and Dismissal, and they happen entirely too often and hardly often enough at one a year (in normal operating circumstances).
An ARD is a battle...errr, I mean "meeting" to discuss placement for Gabriel within the school, the goals that a team of specialists and his parents agree upon, modifications and accommodations to help Gabe achieve those goals, things of that nature.
At the beginning of the academic year, we transferred not only from a different school into a different program, but into an entirely new school district. This made the ARD that we had in August particularly tricky, as it was a combination transfer-ARD and transition-ARD, which sounds redundant, but basically means transferring from Lubbock to Abilene, and transitioning from Preschool Program for Children with Disabilities (PPCD) into the elementary school Peer Assisted Leadership (PALs) program.
My biggest point of contention in August was that, geographically speaking, there could not be a further elementary school from our house that they could have placed him in and still be considered in the district. This town is petite to begin with, and the school system picked the only campus that would be considered a hardship for us. When confronted with the question as to why my son was placed so very far from home, there was no satisfactory answer.
The school has a whole team of people for ARDs. There is the diagnostician, an LSSP (which stands for Licensed Specialist in School Psychology), a special education teacher, a general education teacher, an administrator (which could be a disabilities coordinator, a principal, what have you), and any number of specialists that will be working with your child. Gabriel usually gets a speech therapist to address his communication delays, a physical therapist for any gross motor delays, and an occupational therapist for his sensory needs and fine motor.
All of this brings us to Wednesday.
Wednesday was Gabriel's annual ARD as well as his three-year evaluation, which would reassess his current abilities and determine where he falls in diagnostic criteria. We had a lot of ground to cover, a lot of information to go over, but we scarcely made it a half an hour in before I called the meeting to an abrupt close, gathered what dignity I could muster, and walked quickly out to my car where I burst into furious and horrified tears.
I had brought along Michael and Jarrod with me, a perfect trio of the three stages of navigating ARDs, Michael being completely new to them, Jarrod being well seasoned (he had six to attend that day alone), and me understanding just enough to know but not to fight.
What caused my hasty retreat??
They said those two little words that made my world fall apart:
Intellectually Disabled.
I had been aware that the teacher was recommending a change of placement for the next academic school year, from the PALs class to what is called the ADAPT class. ADAPT is the Adaptive Behaviors class, a baffling, misleading name if I have ever heard one. It is a class with a more restrictive environment, a smaller student-to-teacher ratio, and a curriculum more geared toward life skills and sensory integration and less toward education.
The proposed diagnosis of ID--intellectual disability--felt completely like an ambush.
According the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (known as the DSM-5), an Intellectual Disability presents with deficits in intellectual functioning (such as reasoning, problem solving, abstract thinking, judgment) as measured by IQ tests.
Here I am going to stop and note: Gabriel is unable to comply with IQ tests at this time because of his lack of communication and his inability to attend to a task; in other words, his autism. Any IQ test they would administer at his current functional level would have to be a questionnaire given to his teacher.
ID also has a component of impairment in adaptive functioning, namely social skills, communication, school functioning, and personal independence at home or in the community.
Little note from the author again! Impairment in adaptive functioning sounds awfully familiar, does it not? Oh, that's right! It's just a big fancy explanation for AUTISM!!
Which means that as far as I can tell, the difference between a a diagnosis of Autism and ID is an IQ test that my son is unable to perform.
The real kicker though? Here is a quote from the DSM-5:
-- Intellectual disability (intellectual developmental disorder) as a DSM-5 diagnostic term replaces “mental
retardation” used in previous editions of the manuals. --
So, I am sitting in this room, facing the modern day firing squad of experts...and they are trying to convince me that I need to agree to let them call my son MR.
It felt like some sick joke where nobody was laughing. How could they look at Gabriel--my Gabriel, who has elicited praise from every specialist that has worked with him to date on his obvious intelligence--and mention ID with a straight face?
With what justification could they possibly be suggesting this?
I did not stick around to find out. I requested copies of all the paperwork that would be covered at the meeting for private review, and I got the hell out of Dodge.
My first instinct was, of course, outrage. They were obviously trying to pawn off a difficult child! How dare they!
And oh, how I wanted it to just be their fault. Rationality eventually overcame my emotional reflex reaction, and I started to build my well of knowledge from those that know more than I do.
I contacted several more seasoned ARD dwellers, who gave me much information to chew over, helping me understand the role I need to play for Gabriel and our legal rights. I will explain what I have learned in more detail over coming posts, if I can manage to keep writing--this whole debacle has been taking up a considerable amount of time and brainpower.
The biggest problem we have is that we were completely blindsided by this. We had not received progress reports throughout the school year; there was little indication there was a problem with where Gabriel stood on progressing toward his goals. Granted, he had been sent home from school...a considerable amount. Enough that it was frustrating us, but not enough to suggest a major upheaval like this. And for seemingly unrelated matters. The only reason we knew about the ADAPT thing was because the teacher sent us an email the day before the ARD informing us of her recommendation.
All of this information, including the hefty pack of papers I got in the mail from the ARD committee, has led me to the idea:
The functional Gabriel at school is considerably less developed than the functional Gabriel we see here at home.
Now, the duality of Autism appears to be a well-accepted commonality. An autistic child will likely perform better at school or at home than he or she does at the other. In this case, Gabe does better at home. That is not entirely surprising: home is quieter, has less peers, less noise, less distractions. It is dark and cool and his learning here is more one-on-one and low-stress.
Within the paperwork, I discovered that Gabriel's main priority at school is sensory-seeking. The notes they make about his development are incongruous with what we see here--they notice less signing, no consonants in his vocalization, higher disregard for his name being called, and gross motor delay.
The comments they made lend understanding to their conclusion of ID.
Not that it makes it acceptable, or correct. I still believe in my heart it is 100% wrong. It's just not true. I will reevaluate every time his FIE (Full and Individual Evaluation) comes around until he is capable of answering the question once and for all with a IQ test, but as of right now, my main concern is actually figuring out what environmental circumstances are leading to this discrepancy in performance.
We have an inkling that he cannot be moved to the ADAPT class, which is populated by a different level of functioning than Gabriel exhibits (specifically, the medically fragile and wheelchair-bound), without adding ID to his paperwork.
And we might be completely wrong on that front. In which case, we are happy to consider an alternative placement. Honestly, the teacher for the ADAPT class has a great reputation among her peers and the classroom is made to sound ideal for Gabriel.
Embracing the transition has its own weighty considerations though, too. Gabriel has a legal right to being placed in his Least Restrictive Environment (LRE), and this classroom will be much more restrictive. There is will also be the concession that we will have to make regarding his personal Individual Education Plan (IEP), sacrificing educational goals in favor of life skills. I have to remember that a lot of these, Gabe has mastered at home. The class would be more or less be teaching him these skills in different circumstances. It feels redundant.
There is also the very real possibility that this is putting him in an environment to learn undesirable behavior while he operates with unlike peers under a lower goal ceiling.
A wonderful, wonderful woman gave the this question to ask unceasingly during these proceedings:
How does this make my son independent, employable, and ready for college?
Because those are our goals. That's why we are all here; preparing Gabriel for independence, higher education, and eventual career.
The recent study that states some
90% of adults with autism are unemployable is very real. My concerns are not short-term; I can't afford for them to be.
So, I am suiting up to fight. There is so, so much more to it than I put here. Even I am exhausted from reading this, so I need to curb it. There will be more on all of this later, in future posts. I just offered this up as an amuse bouche of things yet to come.
Remember Gabriel during your prayers--his army is assembling, and we need all the help we can get :-)
--Andie
