School: The Disability Trinity Part II

There are days when I wake up and see the goodness in almost everyone.  I feel well rested, refreshed and ready to face the day in peace with a renewed sense of purpose. I attribute this feeling 100% to the fact that I will never have to attend another fucked up IEP meeting ever again. Also known as an IEP meeting.

If you are fortunate enough to not know, an IEP is the Individualized Education Plan that outlines exactly what services a school will provide a specific special needs student. This is an experience that no parent should have to engage. Me, I have two kids who have received IEP services. An IEP is no small thing. It’s a legally-binding document so school districts aren’t quick to grant them to anyone, no matter how deserving a student may be. Not surprisingly, some parents and caregivers would, and have, fought for with the fury of 10,000 white-hot suns just to get one.

Let’s start with the relatively easy case of my son. Getting his services were more frustrating than infuriating.  I had several meetings every year to revise this or that which always seemed to benefit the teacher more than him. There were homework folders that were implemented and then never checked, plans made to move him to the front of the room that were ignored by many teachers and the seemingly endless behavioral strategies that were well intentioned until a substitute teacher showed up and mistook my son’s pacing (he was allowed to pace in the back of the room when feeling frustrated) for goofing off and sent him to the office.

My daughter is far more severely impacted by her disability. She needed a one-on-one aid and accommodations for almost everything she did in a school building. Her needs were quite apparent. 

Theoretically the meeting where the IEP is written includes appearances from every specialists that will look at your child throughout the school day.  Ideally you all coalesce focused on the individual student and have the very best intentions for their education. Realistically these meetings are like a sadistic game of clue except everyone is the killer  and you are often in a room that is bit larger than walk-in fridge at a Wendy’s.

The IEP game goes a little like this: An IEP, was drafted sometimes with less than 48 hours to review and carefully consider what was being offered. Even if there was NO time to review the document, a parent has to appear to be up on every single detail.

My psych-up music before these meetings was Missy Elliott’s “Spelling Bee”  My flow was not as tight as Ms. Elliotts, but I needed to get in the right frame of mind. I made sure that my clothing was ironed and would always carry extra file folders with previous assessments just in case anyone in the room denied that my child needed a particular service.  I also had held index card that said “don’t speak”, which is a good general rule for me anywhere I go. No matter how friendly I was with the meeting attendees I was all business.

Sounds harsh? In 2005 I had an IEP meeting that lasted 6 hours.  I had refused to sign the IEP until it included year round services which is something that school districts notoriously don’t allow.  The fact that my daughter had these “Extended Year Services” every year previously was not enough. The newly appointed school district representative wouldn’t consider putting it in the IEP.  There were phone calls made to physicians and psychologists to get letters written and we still left the meeting without an IEP. That’s brutal.

There is a hierarchy of participants in an IEP that is rarely discussed with parents but every parent who attends more than one will eventually learn if they want to negotiate these meetings. In general it goes like this: individual student (they really are at the top), attorney for either side (school or student), parent or guardian of student, special education representative from the district, special education coordinator for the school building, Classroom teacher, vocational or rehabilitative specialists, allied medical professionals (occupational therapists (OT), physical therapists (PT), speech language pathologists (SLP)), mainstream classroom teacher (pro tip—they always look frightened), any adaptive specialists (adaptive physical education teacher, art therapists, music therapists), teachers’ aides, any random student teacher. So if you are the parent of a child and you want to get help for them, it’s quite possible that there can be up to fourteen people sitting at the table who all kinda work together. If you don’t bring your A-game and a support to the table all of these specialists, administrators and teachers – all of whom have done this hundreds of times — can roll all over you and take their laughter to an Applebee’s happy hour later that afternoon.

I don’t believe that people get into education because they hate children and want to make their student’s parents miserable. Nor do I think that all IEP’s are just a vehicle for a school district to attempt to cherry pick resources and underfund kids who really need help. But I’ve talked to some other parents (we do occasionally get together, but not at Applebee’s because no one will watch our kids and not at PTA meetings because we’re sort of excluded from those parents… that said, Applebee’s is pretty great).

Ok, so here comes the alphabet soup: Besides the IEP, there are the SLP and OT/PT evaluations, every three year MFE’s, the occasional IEE and always fighting for ESY and APE services all so your child can have a FAPE in the LRE.  If you think these acronyms were designed to make it easier to remember what these services are you are w-r-o-n-g, WRONG! These terms fly off the tongues of special-ed coordinators with lightening-like precision. But if you are in these meetings you don’t dare act like you don’t know what these terms mean. You must show no weakness because your school district already has lawyers.

If all fails and your child doesn’t get the Special Education services that you believe they need with an IEP, you can always try to exercise your right to the long and drawn out Due Process Hearing. However, don’t think that the school district won’t take you to court to for a Due Process Hearing to enforce their version for your child’s best interest,  it’s called a Reverse Due Process Hearing (notice there is no official acronym for this). They have and they will.

If it were just the annual IEP frustration, I think I could deal but I experienced a tremendous amount of day-to-day frustration simply trying to adapt my non-traditional students into the rigid standards that my school districts upheld.  They were constantly left out of the loop for events and even though we had all of these assessments and meetings I swear it was as if the teachers forgot that my kids had disabilities.

So many simple communication issues failed on an almost daily level. Despite the fact that my daughter has almost no functional verbal communication ability, the school’s teachers would very consistently TELL her things to relay to me. Things like, “I’m out of lunch money” or “I need to bring in a newspaper for my project next week” or “I had a small seizure during lunch”. When I would hear, usually weeks later by running into a parent of another verbal kid, I would e-mail the teacher who would be amazed that my mostly nonverbal daughter didn’t tell me. Never mind the fact that we sent a COMMUNICATION book to and from school each day. Writing in a book takes time and you have to spend some time to do it correctly.

If I seem defensive, or like I’ve had an adversarial relationship with my kid’s school district, it’s because I did. It never stopped hurting that I gave these people the privilege of spending time with my oh-so-vulnerable children and I felt no buy in on their part. I had plenty of individual teachers, therapists and paraprofessionals who I not only worked hard with, but I watched them allow themselves to be at times as vulnerable as I was.  I appreciated their love and efforts and their very human frustrations.

At my home I have a file cabinet filled with school paperwork. Old IEP’s, suspension notices, artwork that was clearly not done by my children, long letters that I had written to administrators and school boards, menus for lunches, report cards.etc. These all seem so meaningless now. I fought so hard, particularity for my daughter, to get everything we could to enable her to live on her own. Repeat, I said live on her own. Not go to college, not learn a trade, but to be able to walk to the store and take a bus safely.  However, she isn’t able to do anything without help. Her behavior is still too unpredictable to send her to any sort of sheltered workshop and she is still functioning like a five year old. I think of her elementary school teachers and how many hopes we had to mold a much higher functioning child. This would be a child that could, we thought, eventually appear with just enough work. I think of the hours and hours of home and outside therapy. I’ll never know if keeping her home from school and not doing any outside therapy would have made any difference at all.  There is no way to really know any of that. It’s one of the very saddest parts of having a child with a disability. No matter how many people I would have brought to that IEP table, the results would still be the same. Maybe some skills we taught her have stuck. Maybe she would have learned all that she does know anyway. Maybe I wasted all of that energy looking up different behavioral techniques and taking her to endless occupational therapy sessions to get her to start her letters “at the top”. 

The past is in the past and I’ll let it stay there. I try everyday to let it stay there but it is a struggle. I sometimes wish there was a service for parents like me who have had so many bad experiences in school buildings. Like a fake scrapbook where someone will photoshop my kids images onto some other child’s lacrosse team photo or prom court.  A school yearbook with at least one random of my kid with a friend doing anything…anything at all without an aide or some other pandering smiling adult nearby. The best thing I can say about school is that it’s over. 

One thought on “School: The Disability Trinity Part II

  1. Breaking my heart again this morning, Katie. I sit here weeping for you, Kathleen, and Robert and for my dear Eliot. I,too, am so grateful not to have one more IEP meeting in his or my future. Most of them are a horrible blur, but I remember him exhorting me to “dress up” because “they are always afraid of you, YaYa, when you do.” Love to you.


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