The OT Has Become, Oh So Important to Me
By Monica Moshenko
Nearly four years ago this December, my world changed as my four-year-old son, Alexander, was evaluated through our local school district and was classified Emotionally Disturbed, based on their evaluations.
Since that time, many things continue to change in my life and my son Alex’s, but I believe they are now for the better. From the wrong classification and inappropriate placement I learned about the Special Education system – the State and Federal regulations which gave us many rights I wasn’t aware of for providing a Free and Appropriate Public Education.
Because my son’s original evaluation did not include an OT assessment, I truly believe that the correct diagnosis of Asperger’s Syndrome was drawn out for two more years. As I searched for answers and prayed for direction, I knew that the trendy label of ADD/ADHD wasn’t correct. I believed hat there was more to my son’s very apparent sensitivities to certain sounds, clothing textures, foods and the lack of his own physical awareness, as he continued to “crash” through his day.
When I look through the original evaluation done by a team of professional’s, there were notations, about some possible fine motor issues which my son displayed, but no further assessment by an Occupational Therapist was requested, nor required as part of the school evaluation. As the Committee on Special Education recommended my son to be placed in the most restrictive learning environment for kindergarten, a Boces 6+1+1 class, I began to weep at the decision that I instinctively believed was wrong, yet at the time didn’t know the law. I would receive a daily report (in the infamous log book), which gave me insights into my son’s ongoing challenges with sensory issues, as well as the noted deficits in my son’s ability to appropriately interact “socially.” The same challenges that my son had seemed to appear repeatedly, despite the “behavior management plan” the teacher had developed wasn’t working.
At five years old, the youngest of six children in the class, my son began saying:
“What is wrong with me?
Why was I born like this?
I can’t help the things I am doing.
“Nobody likes me.”
Finally, he had said, “I just want to die.” He had been hearing so much about all the WRONG things he was doing, as he had to carry a slip of paper to “specials” and “lunch” which rated his behavior every ten minutes.
My son’s desperate need to be in a regular class with his own age group, was so apparent. I needed to get him out of the class he was in quickly. After contacting several resources, I found Dr. Roberta Schnorr, a Professor in Special Education at SUNY-Oswego. I began sending her emails regarding my son’s plight in this classroom. Dr. Schnorr took a personal interest in my son and situation and began advising me of the special education laws, and advocating for my son.
I took an Advocacy class offered through UB Law School and began my legal journey into the often untold world of Special Education laws, which would ensure a change for my son, based on evaluations that would come.
Dr. Schnorr agreed to spend an entire day observing my son in his classroom, speaking with teachers, as well as my son. Her 26 page evaluation revealed and concluded that my son should never have been placed in the Boces 6+1+1 class, as there was little if any real teaching going on. Further, that none of the other children in the class belonged there. I also attained an independent evaluation from Dr. Nancy Zoeller, a psychologist, to further reaffirm my stance for my son to be in a regular classroom with support. She concurred, as did my son’s Pediatrician, Dr. Marjorie Pepe.
Now that I had all the outside independent evaluations which all stated that Alex should be in the least restrictive environment, a regular education class, I requested a CSE meeting.
Based on the evaluations, the CSE agreed that my son would be better served in the regular classroom environment, with a full time aide and Consultant teacher services. A victory for the time being, but my son’s medical diagnosis needed to be dealt with, as he continued to have social challenges and his sensory issues were more apparent.
Through one of the many listserves I was on, I learned from another parent about a book that would change things in our life for the good (yes a disability can be a good thing). The book “The Out of Sync Child” by Carol Kranowitz opened my eyes to the world that my son had been struggling with, yet often his actions were perceived as “behavioral” and “willful disobedience.” I had also read another book nine months previous called “Asperger’s Syndrome” by Tony Attwood but since I didn’t have the “sensory” piece about my son, wasn’t able to accept that Asperger’s could be the diagnosis.
I began a search for qualified, experienced Occupational Therapists in Western New York who would be able to do the SIPT testing and located Chris Alterio. I spoke with Chris about my son’s challenges, and he was able to meet with me soon after. My son Alex, was beginning to get wary of another “test” though I was assured the testing was actually fun (and it was). I had made so many different appointments over the last few years with various health-related professionals such as a homeopath, iridologist, allergist, psychologist, audiologist, reflexologist and chiropractor also tried a myriad of natural health products, vitamins and diet change to see if there would be a difference in my son. I continued to use vitamins that I have found to be beneficial for my son and believe that diet intervention (gluten/casein free) is very effective as well but needed to see if there was something to this “sensory integration.”
Since my son had the Sensory Integration Praxis Test last October, I found the effective method of help to address my son’s sensory needs with Sensory Integrative therapy, and the freedom of getting the proper diagnosis this past February of Asperger’s Syndrome. Knowing the correct diagnosis is so crucial as you cannot request the needed supports/services without it.
I share our story with you, as I hope other children will not loose out on the valuable supports and services needed/required but also because the correct diagnosis may depend on the Occupational Therapist’s evaluation. I believe that SIPT testing should be mandated for young children age three to five, as many of the sensory issues that my son had were misread, misdiagnosed, misinterpreted as “behavioral” issues. Therefore, he received the “Emotionally Disturbed” classification and inappropriate placement, along with the unwarranted emotional challenges at the age of five.
After one year of SI therapy, my son has made tremendous changes and is aware of his own sensory issues (needing tactile feedback, when he is in a noisy atmosphere, etc.) and is able to articulate this quite well. He continues to have SI at home, though less frequently than his original three times per week and also receives OT therapy in school twice per week (wears a weighted vest during the day, sits on a special cushion, etc).
This is all why the OT has become Oh so important to me!!
The challenges Alex has with sensory issues thankfully are no longer my main concern, as many sensitivities have greatly diminished with SI therapy. More importantly, the social impairments my son faces (taking people literally, not able to read cues, being too honest, etc.) need to be taught to him on a daily basis. Marc Segar, a young Autistic man wrote what it was like growing and made this very telling final comment in a survival guide for people with Asperger’s Syndrome, “Autistic people have to understand scientifically what non-autistic people already understand instinctively.”
(Marc ended his own life at the age of 23).
Single Mother of twins to Nicholas and Stephanie, 20 years of age (non-disabled) and Alexander, seven years old.
She has been working full time for the University at Buffalo, Great Lakes Program for the last eleven years and also because of her son became a Parent Advocate helping others.