A few weeks back amongst the stack of Costco adds, utility bill, and Fall catalogs there was a cream colored post card addressed to Elisabeth Northern inviting her to freshman orientation at Ferris High School. I didn’t put much thought to it but decided to tack it to our fridge in hopes we could make it happen along with getting Amelia ready for the UW and Charles prepped for middle school. Lots of changes.
Elle technically should be a sophomore in high school registering for AP English literature, choir, and staying late after school for girls soccer. I know it is absurd to think this way but sometimes I find myself imaging what Elle would have been like had her brain developed according to MY plan. I base my hypothetical fantasy upon the simple facts of how she presents today in spite of her malformed brain; a lover of books (even the yellow pages), a fan of any sport that involves a ball, and the joy she expresses when she hears music of any kind, especially John Mayer. Sometimes I have visions of her just running across a soccer field full steam ahead with all her “fantasy teammates”. If I was granted 3 wishes, I guarantee one of them would be for Elle to experience the thrill and power of having her muscles and bones fiercely carry her body in any direction her mind and heart desires. I can literally see her impulse to run whenever she watches Charles play soccer. It is as if her mind forms a plan to “act” but a short circuit between her brain and her legs prevents her from following through. Instead she ends up flapping her wings and takes steps forward as if she is trying to lift off. Unfortunately the hard reality of her genetics keeps her tethered to the earth.
On a few occasions, deep in the night my subconscious takes me far away to a place where my mind and heart safely play out scenes of Elle talking in complete sentences with her siblings as if it was totally typical for her. Sometimes, these scenes also include my daughter running after a basketball or chasing our new kitten. Inevitably, the minutes and hours tick forward signaling my subconscious soul to swim back to the surface where I find her as God intended… physically and intellectually limited. Harsh.
Some how we managed to save time on Tuesday morning to take Elle to her orientation. I was excited for her to have the opportunity to meet her teacher, see her classrooms and tour the high school. We arrived just a few minutes past 8am and made our way through the tall glass doors by the administrator’s offices. There were a few people hanging around chatting but no clear signs pointing us toward freshman orientation. At this point, I began to have a feeling that maybe we weren’t invited after all. Armor on, sword ready, shield up.
I have been in this battle a million times before. In fact just before we left for orientation I had made another attempt to contact our DDA social worker to see where Elle’s file was with regard to the final approval for services. Of course I received the case worker’s voice mail for the 1000th time. I called back and asked to be connected with our caseworker’s supervisor and again was sent directly to her voicemail. Since persistency is one of my strengths, I called a third time and explained to the woman on the phone that this is exactly why I fucking gave up when Elle was 3 years old. ( I can not remember but i may have actually said “fucking gave up”). Ever so politely I shared with her that the system is designed specifically so that parents give up and that their lack of basic action is all part of the grand scheme, to keep the outflow of money to a bare minimum. I also reminded her that the services we are requesting are in actuality derived from the 33% of my income dollars that I have paid since my first taxable job at McDonalds in 1986. The woman on the phone, quickly and politely told me her other line was ringing and put me on hold… I hung up. That was futile… again. Maybe I should change my approach. (FYI, I should be getting my period in about 5 days).
By the time Elle and I walked through the front doors of Ferris High School, I had already waged one battle on my daughter’s behalf. As you can imagine I was in no mood for another. It quickly became apparent that Ferris had not intended to “invite” Elle to Freshman orientation. Apparently this occasion was only for the normal high school students…. as if that is a thing. A very helpful and kind office lady could see we were lost and offered to find Elle’s new teacher. After a few moments she returned with a very tall woman wearing a FHS red t-shirt. The woman looked a little surprised to see us. “Elle received an invitation to freshman orientation. Will there be an opportunity to see her classroom or take a tour of the high school this morning ?” I kindly inquired. “Well, our kids don’t typically attend these events you know, since they are in a self-contained class… you know… and ummm, well no we are in meetings all day today, so uhhhh…” she replied. “OK, so what you are saying is that there is nothing organized or schedule for the incoming special needs students with regard to orientation even though we received an invitation ?” pause…… “Correct.” She answered. “Great, well that would have been helpful to know ahead of time and not sure why we received an invitation if we weren’t really invited in the first place. ” I felt badly for being so tight with my words and emotions. But I am unmeasurably tired of this battle. How could the special education teachers and leads of their department not for see the need to be clear about freshman orientation ? Why have these things not have been ironed out ? Clearly we are not the first family with a special needs kid transitioning from middle school into high school ?
I know it is hard for people with typical kids to even begin to understand our plight. But it really is not complicated and in fact it is quite simple. Please do not exclude us. Please assume we want our child to be treated just like every other kid. Our daughter does not have a contagious disease, she is not stupid, she does not bite. In fact our daughter in spite of her disability loves to make friends, enjoys most everything your child enjoys, and appreciates being included… just like your child does. Why does this have to be so hard in 2017 ? How could FHS not have thought this through? Why does the special ed teacher not already know that all it takes is a simple letter or email to all her incoming freshman kids explaining why these kids are not “really invited” to orientation and instead she is offering xyz as an alternative ? I do not have the energy or time to do other professional peoples jobs’. This is not my job, I already have a thousand other jobs… mom, wife, daughter, women’s health care provider, therapist… OK, so now I need to hold the hand of the educators too… Fuck it. I am tired. Never mind.
I took a deep breath and took elle’s hand and headed toward the gym where the class of 2021 was celebrating their kick off. I decided that I was not going to just walk out with Elle. I wanted her to at least have some what of an idea what she was getting into… and to experience the fun and excitement surrounding the incoming class. As we approached the gym, the cheers and chants were echoing in the halls. Elle was getting excited, her little wings beginning to flap. She was ready for take off ! So much young energy and joy! As we walked in and found our seats in the empty bleachers off to the side, Amelia’s former cheer team recognized Elle right away and began waving and smiling directly at her. Welcoming her with authenticity and love, ONE LOVE. The music was blasting and Elle was incredibly excited to be there. “This is your new school Elle, you are a Saxon!” I told her . Before I knew it two of the cheer girls came right over to her and took her hands encouraging her to dance along with them as the music played. I could feel my armour melting away and the familiar lump in my throat began to rise from inside my wounded heart. This is all I was asking for; for my daughter to be included. It’s not that hard really, in fact it is quite simple.