November 21, 2018

Exodus and The Very Last IEP

Like many parents of children who have special needs, we spent those first few years after the initial diagnosis running around to every specialist in town, open and eager to try every possible treatment. And once our son, Danny, entered the public school special education system at the age of 4, we also immersed ourselves in the annual committee-from-hell process known as the Individual Education Plan (IEP).

We had been warned from parents that came before us that these meetings were crucial to our son’s future wellbeing, and the need to carefully take home the documents before signing anything. At the same time, we were told that if we wanted to make sure something was happening during his school day, such as speech therapy, we needed to see it “in writing” as part of the IEP. Verbal commitments held no weight.

Ideally, the IEP meeting is a coming together of the parents, all the professionals who know/work with the student, along with at least one representative from General Education and the school’s administration, to determine the student’s present educational and functional levels, and then to painstakingly put together a comprehensive plan that adequately and individually addresses all of the students academic and social needs. The unfortunate reality is that IEP meetings can turn into prolonged exercises in bureaucratic double-talk and a lot of buzzwords that result in services being cut or not offered at all.  Some of our IEPs lasted for hours, and more than once, ended in dispute.

One prime example was when our son was around 9 years old and attending elementary school, and the Los Angeles Unified School District (LAUSD) senior managers were trying to save money by getting rid of 1:1 aides, which our son had from day one, due to his physical and small-motor disabilities. The Assistant Principal at this particular school was a nice but totally clueless individual when it came to special education. Although she barely knew Danny, she had been given marching orders by her supervisor, and was determined to carry them out. When it came to the part in the IEP about retaining our 1:1 aide, this ninny said, “I think it would be so much nicer for your son if another student could help him out instead of an adult aide.” I think I may have blurted out an expletive or two before saying, “I don’t think you realize that our son needs help from the beginning to the end of the school day. Are you going to pull out another student all day long?” That ended that discussion.

As our son is now 21 and aging out of the special education system; we recently had our last IEP meeting, with our son in attendance, along with his wonderful 1:1 aide with whom he has been assigned for more than a decade. The IEP meeting was a pleasant, 45-minute gathering of professionals who had worked with Danny, and many of the professionals there remarked on his progress over time. Although he didn’t meet all of his goals from last year, the team was determined to make the most of his remaining months in high school.

With Passover right around the corner, I can’t help thinking about the journey forward for Danny and for us, after he leaves LAUSD. Although the special education programs at LAUSD were very problematic at times, at least it gave us a structure and a clear path forward. We knew what to expect and learned how to navigate around the rough patches. Soon, we will be on our own, trying to figure out the best way to keep moving ahead in life. It is kind of liberating, and scary at the same time. Not so different than leaving Egypt.