Positive outweighs negative in sensory integration dysfunction

The seat cushion, balanced between hard and soft, provides the exact support I need. This aisle seat is only three stairs down and a few steps away from the exit. The aisle, made wide in order to accommodate wheelchair users and thereby limiting the number of seats, is the perfect distance between me and everyone else.

The last seat, the one in the back, the row next to the outermost wall of the auditorium, provides me sanctuary. I escape the sensory stimuli from the lobby, crowds, lively voices filling all the spaces and retreat to my perfect seat.

The September 15th performance of War Horse did not go as planned. My perfect seat turned to nightmare when the giant speaker mounted to a pole directly behind it menaced me. I looked at the bulky chains holding the speaker in place and wished I could loosen, disconnect them and remove the speaker.

My husband, always my protector in the overpowering world, approached the usher; she was directing everyone away from the speaker, telling them to move down to lower seats. When he explained my special needs, she called the house supervisor. Although afraid of heights, he made his way to the nosebleed section, listened as we explained my needs and escorted us to alternative seating.

Unfortunately, my special needs extend beyond sensory integration issues and include serious physical limitations. I can’t crane my neck without at the least getting a migraine and sciatic pain and at the worst passing out, so the new seat didn’t work. My inability to climb more than three stairs eliminated any other available seat. As the lights went down in the theatre, James and I left.

After explaining the situation to the box office staff, our money was refunded for both the tickets and parking. I left, completely rattled and falling apart but extremely appreciative of the volunteers who tried their very best to help me. Thank you, Rosie, for doing your best to help me and for being so comforting and friendly. A special thanks to Jim, who tried so hard, tried everything he could think of, to find alternative seating. I felt bad for him, because he wanted to solve my seating problem so much but couldn’t.

I told him he did the best he could and that I had so many issues that finding another seat was impossible. I told him that the reason I always sat in my perfect seat was because it was perfect. As we walked away, I was overcome by frustration my special needs create and disappointment of not being able to see the show. This show would remind me about my special bond with my former horse Zaldiban.

The kindness of Rosie and Jim reminds me that most people, when hearing of my special needs, do what they can to accommodate me. Their willingness to help also reminds me of the rare people who don’t help and who use my special needs against me.

On September 13, 2010 James and I became first time homeowners as we signed the closing documents for a condo we found at 3901 Cole Avenue in Uptown Dallas. We’d spent almost a year looking for the place that would work for us and I spent hours in the Haskell Cole condo to make sure my sensory needs would be met.

Less than two months after we moved in, the Homeowner’s Association (HOA) decided they wanted to move the five air conditioning condenser units from the roof to outside our bedroom and bathroom windows. With only eight condos in the complex, James and I felt sure that if we explained my health conditions, limitations, how the mechanical noise and vibration of the condensers would send me to the hospital and asked for a reasonable accommodation based on my disability, then the HOA board of directors would reconsider their decision.

They didn’t.

On January 30, 2011, after months of harassment by the members of the HOA, I suffered my second ruptured brain aneurysm. Once I filed a Fair Housing complaint in March 2011 alleging the Haskell Cole Condo Owners Association’s discriminated against based on my disability, the board and other HOA members increased their harassment and added retaliation for filing the complaint, intimidation, threats and coercion with the intent of driving us from our home.

It worked. With the air conditioning units outside our windows creating the mechanical noise that makes me physically ill and the continued harassment by creating bogus violations, fines and verbally attacking us when we stepped outside our doors, we had no choice but to flee. Unable to afford both a mortgage and apartment rent, we arranged a Deed in Lieu of Foreclosure with the bank.

Emily, board president, sent the following excerpts to me when I asked her to stop harassing me two weeks after I was discharged from the hospital following from brain surgery:

“. . . unlike you, i do not have the time to respond to this point-by-point, so i will be fairly brief in my response. i am much too busy to have constant back and forths with you – it’s called a job and a LIFE (even though it’s clear YOU have far too much time on your hands). to be sure, there are NO misunderstandings. i think you’re a miserable old lady that is so bored and miserable in her own life that she feels the need to spread her misery around to others. it’s actually kind of pathetic.”

Patti, board secretary, believes that one of the reasonable accommodations she gave me was to talk with her psychiatrist about how people on the autism spectrum behave. She sent the following words in reply to Emily’s email: “Do you think she will get the whole picture now?  Seems to me it’s her goal to try and destroy everything and everyone around her. Must be a name for that type of serious illness??”

I don’t have an illness. I have serious and chronic health conditions and when I ask for help managing unexpected sensory situations, people usually do their very best to accommodate me. Thank you, Rosie and Jim, for showing me kindness and for understanding my special needs. People like you restore the faith in humanity that suffers when I face discrimination based on my disability.

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