Real Life. Real News. Real Voices.
Help us tell more of the stories that matter from voices that too often remain unheard.
Join HuffPost Plus
thinner_close_xCreated with Sketch.

The I.E.P. Adventure

Would you like to come to an I.E.P. meeting with me? I know, it sounds like fun. What is an I.E.P.? It is an Individualized Educational Plan, and it is every differently abled child's right in the United States of America.
This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email.

Would you like to come to an I.E.P. meeting with me? I know, it sounds like fun. What is an I.E.P.? It is an Individualized Educational Plan, and it is every differently abled child's right in the United States of America. However, it can be quite a lot to endure. Some parents give up on it. Some parents don't give up, they see it through to the end, they attend meeting after meeting, they negotiate, they push, but then they have told me they wish they hadn't bothered. Friends have said that at I.E.P. meetings they were promised the moon but it was never delivered. They felt the stress, time, and aggravation cost them more than the I.E.P. ever gave their child. Some began the I.E.P. process only to be left high and dry without it being finished, or with what they felt was an unconscionable treatment or inappropriate placement. I've received advice to just homeschool from parents who have been through this process. I've been told to try to find a nice private school who will work with us, if we can afford it. I'm disheartened by these reports. It shouldn't be this way. And yet I stopped living in the world of what should be long ago. It is what it is, no matter what I think it should be. I haven't given up on my daughter's right to an I.E.P. yet. But at the end of this process, who knows? I do have the thought that if it's this difficult to be sure her right to an education isn't violated, isn't her right already being violated? Is the burden of hunting out a Free and Public Education for a special needs child prohibitively difficult? These are just thoughts. I haven't come to a conclusion yet. I haven't met or read accounts of parents who are happy with their child's I.E.P., but I would love to. If there is a recipe for success, for making this work, please tell me all about it. We are really trying.

When I arrive, the room is already full. It's in the principal's office, although I am introduced to the "acting principal." What happened to the actual principal? Many of the therapists who assessed my daughter are not there. Even the psychologist I met with on several occasions has a substitute psychologist at the meeting, a kind looking woman but a stranger I've never met. I'm glad I brought a photograph of my daughter so the people discussing, participating, and eventually deciding how to best reach her educational needs can at least put a face to a name.

I decided to wear beige slacks and a white button up. When I sit down, I realize my position combined with the chair I'm sitting in cause the cotton to bunch a little, stretch a little, opening the space between the buttons ever so slightly. I am mortified. I am nervous. When I dressed, I was standing. I didn't try out sitting in this button up. I had no idea it would do this. My heart is racing. I take a deep breath, noticing my anxiety. With a wave of self awareness, I am calming down a bit. Why do I care what these people think of me? Why do I want to make a good impression? I'm so relieved I wore an undershirt so that the spaces don't show any skin. The truth is I care a great deal about showing up for my daughter, doing my best for her. There is nothing like the vulnerability of a child in need to bring out the hero in any of us.

The carpet is grey, the chairs are old. The table is clean but way too small for all of the people. How many? Maybe twelve are in attendance, including my people and their people. I wish it didn't already feel adversarial. The general education teacher and acting principal sit at a distance as the rest of us huddle at the table to discuss my daughter. This is a Triennial I.E.P. meeting, and so this may account for the attendance of so many experts. At a triennial, it is decided if the child still has special needs at all. It is a bit more in depth.

An I.E.P. meeting can last quite a long time. I find this challenging, because unlike the other people in the room, this is not my paying job. They are all getting paid as each minute ticks by. I am missing out on earning, organizing, and being the provider I yearn to be with every meeting, every school visit, every long school discussion. Of course, I want to be there, I wish I could throw all of myself into being her advocate. But we have to eat. We do require a roof over our heads.

In addition to parenting a differently abled child, I have an intellectually gifted child. I also have my own work, bills to pay, and a life. Carving out time for hours of meetings is not always easy. I wasn't given a copy of the assessments in advance, but instead I'm handed the 38 page document as I enter the room. With me is my daughter's case manager from our regional center, as well an attorney from the regional center. They are there to help make sure the school district does what it's supposed to: provide my child with the offer of a free and public education (F.A.P.E.) as well as abide by I.D.E.A. (Individuals with Disabilities Education Act), which dictates that she receive an appropriate education in the least restrictive setting. Why is this important? In the U.S.A., it seems the path of least resistance for the educational system, struggling as it has been for some time, has been to segregate differently abled kids. This can and often does result in the absence of a curriculum, absence of peer modeling, and highly restrictive setting. Some parents refer to their child's F.A.P.E. as state funded babysitting, and not much more. This is not as it's supposed to be, and yet... well, you know. It is what it is. The majority of complaints to U.S. Department of Education's Office for Civil Rights have to do with disability issues: the neglect, abuse, and confinement of differently abled children. In fact, this meeting I'm attending came to be only after I filed a complaint against the school district on my daughter's behalf for ignoring/being delayed in responding to my request for an I.E.P. You might be surprised, although I am not, that my written request for an I.E.P. meeting was delivered with proof of delivery through the United States Postal Service in October of 2015 and the time of this first I.E.P. meeting is in May of 2016. What if I hadn't filed the complaint? To sum up, it can be a lot of time, relentless perseverance, and record keeping to make sure my child is receiving any attention, let alone the attention she needs. I teach meditation, and somehow this I.E.P. challenge has strengthened my resolve to care for her in the best way I can. Push me down and I get up feeling stronger. Why? Perhaps it is the neuroplasticity promised by meditation practice paying off in reality? I would like to think so. But what about those parents who aren't strengthened by hindrance, but once kicked down stay down? What about those special needs parents who are barely hanging on to sanity and happiness by the skin of their teeth? I can't help but think of them, and naturally I want this to be a little better for all of us and our children.

My husband arrives shortly after teaching his ballet class at a local dance studio. He apologizes for his delay, and he is handed his copies of the documents. We've been facing the challenges of our daughter for several years now, and we have learned that we can't completely collapse every other aspect of our lives. For us, having a special needs child is like being in the midst of a serious medical crisis, which we've also experienced with our children. In the case of a medical crisis, we have dropped everything in order to be present and navigate the storm until it passes. With a differently abled child like ours, the storm doesn't pass. There are relative calms and swells, but the storm doesn't actually end. Ever. Our life situation requires endurance to stay with it, in it, for the long haul without compromising physical, mental, financial, spiritual, and vocational health. We still need to work, we still need to take care of ourselves as much as we can so that we can continue giving our care to both of our children. When the plane is going down, it's survival wisdom to make sure to give yourself oxygen first so that you don't collapse into unconsciousness before you can place an oxygen mask on your child. Unfortunately, the metaphor for a plane going down applies to the family of a special needs child in the United States of America in more than just this one aspect of self care. But I digress. Where were we? Husband arrives. I'm so grateful to have him by my side, advocating for our daughter. But we don't have to say much at this first meeting.

The next two hours consist of the experts in attendance reading the 38 page document out loud. I listen carefully to each expert describe my daughter's strengths and weaknesses. Their findings don't surprise me. What does astound me is the sincere care in each of their faces. I realize I am looking into the eyes of people who have devoted their lives' work to helping children improve their challenged lives. The speech therapist, occupational therapist, physical therapist, psychologist, assistive communication device specialist, the district administrator, the special education teacher, the general education teacher, the acting principal, regional center attorney advocate, and regional center case manager all share this common tired but determined expression of altruistic service on their faces. As much as I am currently frustrated with the system and frightened of the potential outcome, I am hit with the realization they deal with this troubling system every day, too. And yet they persevere. We make it through the document, and the meeting is adjourned, scheduled to reconvene in two weeks. Two weeks?! The school year is almost over. How will we get all of those people back into that little grey rugged room again? I walk away from the meeting with a mix of emotion. I'm surprised to realize I'm fairly certain every person in that room cares. And like us, they're doing their best with what they have. Forgive me for being a mixed bag, but I leave consumed by fear, anticipation, disappointment, and hope all at once. This I.E.P. adventure is not short on suspense.