This article resonates with me because I have a severe hearing loss, and was a child musician exposed to loud music until I was about 20…symphonic orchestra, jr high band, high school band, high school orchestra, college band. Many marching bands.
Meet my friend and hero, Donnie Kanter Winokur. Donnie and her husband adopted Iyal as a tiny tot, and as he grew, discovered he has Fetal Alcohol Spectrum Disorder. Join her via video as she discusses what this beautiful young man and his family have had to deal with, and how a highly trained FASD service dog added a delightful dynamic to their lives.
Guest post by Debbie Lurie
My fifteen-year-old son has been on an academic program in Israel since January 29, 2012. He returned home in early June 2012. He completed the second half of tenth grade in Jerusalem on the TRY program. He received accolades for his helpfulness and kindness to those in need.
How did he get to this place in his life? In first grade, in Hebrew Day School, where I taught English, both his Hebrew and English teachers came to me on the same day (unknown to each other) and told me that they wondered why such a bright child couldn’t write.
Two school districts fought over who would NOT have to test my child, as the school was in one district and we lived in another. We forced testing by one district who stated he had no issues. We forced testing by the other district who stated he needed help with a lisp and help with fine motor skills (including handwriting).
The second district indicated they would not help him until third grade, giving us numerous excuses. We went to our community services school, for which we pay taxes, and they claimed they could not help as an outpatient. I know numerous people in our exact position who received many services. We could get none.
Our neurologist told us that if we waited until third grade to deal with the lisp, it would be permanent. We paid out-of-pocket for someone to come to our house to work with our son. The expense was worth it.
The speech therapist was wonderful and our child has no lisp. We also paid an OT to come to the house to work with him. His scissor and other fine motor skills improved, and his handwriting became just legible, which was a big improvement.
After navigating the so-called system, on the advice of my son’s psychiatrist who treated his ADD, we paid a lawyer $10,000 merely to get a 504 for my son. It cost another $10,000 to get irrefutable testing done to obtain the 504.
The Hebrew Day School teachers were not agreeable to the suggestions to help my son, so we pulled him from the school after fifth grade. He’d been bullied and treated poorly. It is a shame: I worked at the school and the education was good – as long as the child fit the mold. (I pray I am a different type of teacher, as I try to teach to each child’s learning style.)
Some teachers in public school worked with the 504. Many said my son was lazy. He has ADD, Executive Function Disorder, dyspraxia , and dysgraphia. It was no surprise when the district psychiatrist told us he had an anxiety issue!
In seventh grade, the district came to us and told us my son needed an IEP! We had told them that $20,000 ago. Even with the IEP, some teachers did not follow the accommodations. “He just has to work harder.” “He has to pay attention.” “If we coddle him now, how will he learn to do the work for himself?” I was aghast when I heard these statements.
The problem was that my son is excellent verbally. He can answer most questions and speak an essay. But he cannot write it on paper! He is very social and popular. He is handsome and looks like a very normal child. I believe those reasons are why some teachers would not take the IEP seriously.
Those teachers who listened to our suggestions and learned about my son were amazingly successful. Those who forced him to sit and take notes (notes provided was an accommodation) saw failure. One fantastic science teacher would let my son be the one to get items and run errands to offices. He kept my child busy and the payoff was amazing. My son loved the teacher and the class and did quite well.
Now he’s in high school, and more teachers believe in his disabilities and the IEP. I meet with the guidance counselor and any teacher who does not honor the IEP, or who chastises my son for his disabilities. After one or two meetings, the teachers seem to catch on.
In junior high, I twice had him removed from classrooms. In both cases, he improved by at least two letter grades in less than a month.
A teacher can make the world of difference. Resource room is only valuable if the teacher is good. Otherwise, it is a waste of time. (In junior high resource, my son could not do homework and had to wait for the teacher to get to him to do anything except sit and read! It was a joke.)
In the beginning of this year – tenth grade – we found out he had a visual disability that affected his reading. It is no wonder he hated reading! He is using a computer program to help with that issue and it is helping. (I have no idea why no eye doctor or the school didn’t discover this.)
We suggested the software program, Dragon Naturally Speaking to our son numerous times before he agreed to try it. Once he felt it was his choice, he embraced the program. We are grateful it exists.
There is more, though I think the above gives a good idea of the difficulties one can face. So much for No Child Left Behind! My child was allowed to fall through the cracks. It is my full-time job to advocate for him. He is doing much better now.
I got myself on district and school committees and got to know the principal and other administrators. I made sure I was on committees that could make a difference and where I could explain what we went through, and try to prevent those difficulties for others. Our high school principal is a wonderful man who has many concerns with the current system. He tries his best to do well for the students within the parameters he must work.
The TRY group participated in a weeklong Gadna experience (Israeli army training) and my son earned the Most Excellent Soldier award out of 55 participants. One of his crowning moments was being chosen as Rosh (head) of the program’s big barbeque. He had never barbequed prior to this trip! On one call home, he told me he labeled the shelves on his closet. What an incredible step for him.
He scored over 100% on all sections of his Hebrew exam and earned A’s and B’s in his secular studies. His one C was in the Israel Core Course, as he did poorly on the midterm. It is interesting to note, that the ICC teacher is the only one who did not tackle concerns as they occurred (missed homework assignments) and felt my son was not motivated!
My son is thrilled with his grades! We are proud parents. Disabilities did not keep him from being independent, responsible, and faring for himself.
This program stressed that students had to have the ability to be independent as coddling was not an option (and they weren’t coddled). It was not always easy and we dealt with homesickness and his having to buck up at times; however, he shined and has become an incredibly confident and capable young man. He even gained twelve pound of muscle!
The educational system is flawed, and every parent must be watchful and advocate for their child. If we listened to the “system,” imagine where our child would be now.
These are some of the people I work with and for as a board member. Last year I sat next to Staff Advocate Donna Powers for a lengthy seminar. She’s an amazing woman. She’s extremely savvy, very knowledgeable in some areas in which I work, and has incredible energy. And working with Peri Jude Radecic has been an honor. Her staff is more than any nonprofit could want.