My Growing Disgust

My level of disgust is growing exponentially in the public education system of this country.

DH and I have grumbled at each other back and forth about sending our Deaf children to the deaf school versus the hearing impaired program in a neighboring district. For the time being, I have so far come out on top in this grumbling, my wanting them to have a broader range of experience with the hearing world in which they will be living and functioning within in the future.

HOWEVER.... After reading my 3-year-old son's IEP report from that program, I am reconsidering the wisdom of that decision.

First, we have chosen (as is our right as parents - for now, anyhow) against cochlear implants at this time. There are a couple of reasons for this, but suffice it to say that MY grumbling involves personal choice and who the hell am I to force a life-altering ELECTIVE procedure on another human being - regardless of who it is - when there is no concrete evidence that:

1. Implantation of a device that, while effective in many people, will necessarily give my son with profound hearing loss much benefit, if any at all;
2. Implantation of a device that, while effective in many people, will NEVER "cure" deafness and remove the social stigma from my child that he is "broken" and, therefore, needed to be fixed;
3. Waiting until he is a bit older and can contribute his own opinion to the discussion will diminish his capacity for language in any way. This is very important, drawing the distinction here: Just because he uses a different language does not make him defective or incapable of effectively using any language. I am meeting more and more Hearing people that know (or are attempting to learn) American Sign Language. Knowledge is spreading, and that can only benefit him.
   

Second, considering the distance between our home and the two schools and the availability of bus transportation to the neighboring district as opposed to the deaf school, which is further away and we would have to provide our own transportation - unless we boarded on campus, which would be unreasonable in light of his young age - and having other children departing for/returning from school at various times during the day (5 children in 4 different schools due to their ages and various special needs and which building can accommodate them - it's a fucking nightmare, the roadblocks thrown in front of us in attempting to secure their "rights" to COMPULSORY education) all in combination with my work schedule, the public school option seemed perfect.

At least, it seemed perfect until I got this wad of shitty-looking pink paper that is his most recent IEP report.

Keep in mind, my son was born Deaf - profoundly Deaf, in fact - as a result of a heredity condition known as Waardenburg Syndrome. His characteristic white forelock, brilliant blue eyes, and skin hypopigmentation (and, of course, the deafness) are long-documented traits in his father's family extending back generations. Nearly the entire family is Deaf, and they are proud of their heritage and - most importantly - their culture. Our daughter was also born with sensorineural hearing loss and did use hearing aids for a time, but (strangely, perplexing even our otolaryngologist) her hearing was determined to be normal at age 2. Of course, having had limited hearing during those critical years has affected her verbal language, but now at age 4, she is working diligently to catch up - and she is truly bilingual (we used Total Communication with her from the start, with only moderate to severe as opposed to profound hearing loss and her more substantial residual hearing ability and capability of making use of hearing aids).

Anyhow, on to what got me all in a yank about this report.

Impact of disability on progress/involvement in the general curriculum:
Present level of academic achievement [spelled incorrectly in the report, BTW, "acheivment"] and functional performance and hearing loss impacts how he is able to:

• Locate the source or direction of the speaker and sound
  
• Discriminate between speech and noise in all settings of the school
• Hear oral directions, instruction, and discussion in the classroom or other activities
• Attend when listening for periods of time
• Hear peers or side conversations
• Progress in oral and written language development
• Follow through with auditory information due to competing sounds

Um, he is profoundly deaf, and amplification devices have proven to be of little benefit due to almost nonexistent residual hearing, so it would seem rational to conclude that he cannot and will not EVER be able to "overcome" a single one of these issues. Perhaps this is the reason Deaf and Blind children were funneled into institutions such as the Michigan School for the Deaf to meet their needs, as they would not be able to be met APPROPRIATELY in the environment of a mainstream public school.... Let alone the fact that verbal language has little impact on written language - many Deaf are capable of producing perfectly coherent ENGLISH written documents without ever having heard a spoken word in their lives. And don't even get me started on the ability of Deaf individuals to learn to SPEAK ENGLISH - and do it well (think Marlee Matlin).

Let us continue:

"[...] decreased communication skills interfere with his ability to communicate his needs and the ability to communicate knowledge within all educational settings."

Interesting, considering the sentence immediately preceding that states: (Emphasis mine)

"He has been very resistive to using signs functionally to communicate his wants and needs; however gains in this area have been noted during the past month."

This is interesting in the fact that we had brought our son into a homeschooling environment for several months at the beginning of this year (due to his lack of progress in the public school, among other reasons, up to and including his teacher removing his clothes to "inspect" him for bruises without our knowledge or consent, a fact that our son was able to communicate quite readily to us at home and for which the teachers had no reasonable explanation as to why they had done so) and only about a month ago sent him back because he missed the social interaction. Hmmmm.... homeschooled for several months with little to no progress prior to that time while in the public school, back in that same public school for about a month and suddenly making gains that are noted over that month.... BUT: They scored him lower (yes, LOWER) on his current skills than on his prior skills, "Achieved/maintained" (scores of 1) and "Progressing at a rate sufficient to meet the annual goal for this objective" (scores of 2) before homeschooling, "Progressing below a rate sufficient to meet the annual goal for this objective" (scores of 3) after he returns from homeschooling, even though "gains in this area have been noted during the past month."

And on we continue, to an issue that shocked me, as it has never been addressed with either my husband or myself at any point by either the teacher or any of the other half-dozen people contributing to his IEP and in direct contact with our family for the past year:

"During therapy there have been several occasions that [he] suddenly stops what he is doing, when engaged in an activity, and blankly looks straight ahead. During this time, I have been unable to get his attention through signs, waving of my arms, and/or through any visual stimuli. After approximately 30 seconds, [he] becomes responsive, but appears confused and needs re-direction to complete the activity. Medical intervention may be warranted regarding the possibility of seizure activity."

Thanks a fucking ton for NEVER telling me that my son is exhibiting seizure-like activity so that I could, you know, TAKE HIM TO THE DOCTOR, YOU FUCKING HALF-WIT MORON! This is disturbing to me on multiple levels, even outside of the fact that they were obviously too stupid to tell us what was going on so that we may address it in an appropriate and TIMELY fashion (remember those removal of clothing and seeking injuries incidents and the fact that our county CPS agency is full of corrupt motherfuckers who have already tried shoving it up our asses without a bit of Vaseline in the past, a fact well known at that school - can you say "parents are guilty of medical neglect," regardless of the fact that they said not one word to us about what they had seen and the fact that he has exhibited none of that type of activity at home?) These people know my history, that I suffer from multiple sclerosis AND a seizure disorder AND an idiopathic syringomyelia.... So let us not tell the parent with a history of neurological problems. Although they are not necessarily hereditary conditions, taken together they could be disturbing to the parent and THE PHYSICIAN of a child with this history; my own neurological issues started at about age 6 with absence seizures - you know, those kind where you SIT AND STARE, UNRESPONSIVE?

Jumpin' Jesus on a pogo stick.

Moving right along....

Oh, I see that "gains in this area have been noted during the past month" again.

"The Expressive One Word Picture Vocabulary Test (EOWPVT) measures single word expressive vocabulary in a picture-naming format. This test is normed on hearing children. [He] was unable to establish a basal (8 consecutive correct responses). Therefore, the following data is being reported as baseline data only. [He] earned a raw score of 15, which gives him a percentile rank of 1 and a standard score of 65. [He] was able to label the following items: tree, eyes, kitty, telephone, bird, scissors, swing, couch (chair), plane, book, watch, wagon, ear."

Okay, let us now compare apples to oranges, shall we? We will compare your DEAF child to a HEARING child and score him.... well.... according to a skewed scale.

What-the-fuck-ever.

"The Carolina Picture Vocabulary Test (CPVT) measures the receptive sign vocabulary where manual sign is the primary mode of communication. [He] earned a raw score of 23, which gives him a percentile rank of 2, a standard score of 69, and an age equivalency of less than 4 years."

That is a bit better, comparing oranges to oranges. BUT: Considering he is THREE YEARS OLD, how is he "behind" with having "an age equivalency of less than 4 years"? Did I miss something here?

"Analysis of a spontaneous language sample revealed that [he] is communicating through occasional signs, gestures, facial expressions and a few vocalizations. He has been very resistive to using known signs functionally to communicate his wants and needs; however gains in this area have been noted during the past month."

There it is AGAIN, gains being noted during the past month!

"Functional use of the following true signs have been recorded: you, fall, big, drive, cry, finish, water, girl, fish, better, Kleenex, color. Furthermore, [he] is beginning to combine a few words: help me, me finish."

He is beginning to combine words, as per the stated "goals" of:

1. "Appropriately, verbally and/or sign, a 1 word sentence by the end of the 1st semester" [which was in January 2009, met November 2008 with a status score of "2" and January 2009 with a status score of "1" but currently with a status score of "3" (as above)];
2. "Appropriately, verbally and/or sign, a 2 word sentence by the end of the 2nd semester" [with a current status score (as it is the end of the semester now) of "3" - OH, BUT THEY EXPLAIN WHY: Because he was being homeschooled - even though they have indicated that he is, in fact using 2-word sentences.]

Of course, these are all attributed to not only expressive but receptive language skills - as in indicating that he does not understand more complex statements posed to him as a listener. However, I can tell my son "Tell daddy to come here," "Go outside and ride your bike," "Go find your crayons and paper" (fairly complex commands for a 3-year-old who suffers from receptive language deficits, right?) and he understands perfectly. He also says things you would expect from a 3-year-old: "That is MINE," "That is yours," "I don't like hamburgers," (okay, you might not expect that one from a 3-year-old, but something to that effect) "I want a drink of milk" and countless others. He quite effectively makes his needs and wants known - if you are not a teacher attempting to divide your attention between 20-some students of whom only 4 or 5 have varying levels of hearing impairment and the remainder being hearing, or if you are a speech pathologist who is attempting to force a young child into doing something they have no interest in doing when there are dozens of far more interesting things to focus that monstrous imagination and headstrong will upon.

During the months we were homeschooling - those months in which he made demonstrable gains prior to returning to the public school system - we were continually begged and pleaded with, cajoled, and eventually browbeaten into returning him to their facility.

For what? So they could tell us in a report a month later that he was being "penalized" for an (obviously superior) education simply because we were able to provide it ourselves and make the gains they were incapable of making, by marking his status scores lower? To subject him to testing that is "normed on hearing children" and comparing him as apples to oranges, PROVING he is "deficient"? To tell us that our child is "disabled" simply because he has a physical trait that precludes his being able to attain a cookie-cutter "education" in a "normal" school setting?

How much longer before CPS comes pounding on my door at the behest of the school system because I "refuse" to give him a "normal" life by forcing the invasive implantation of a device into his skull that may or may not work in his case?

Seriously, the only good I have seen come out of this is that now I have - inadvertently - been made aware that there may be a neurological issue with my child for which I can seek medical treatment, something that might not have been done but for their incidental inclusion of that little tidbit into their farce of an educational planning and progress report.