People: They Come and They Go; A Special Needs Life

They come and go. These people, in and out of our lives. A constant, steady stream. When my daughter was scheduled for an evaluation at Vanderbilt University Medical Center's Child Development Center, the form asked if we wanted psychological support. Blessedly, I clicked yes. The social worker came to my home because I asked. It was an exception made. She loaned me a book. It had a religious overtone, which she said some people liked and others did not. I did not, but the author wrote candidly about her life with her special needs son and for that reason, the social worker thought it helpful and it was so. It was the first of many books I'd read about this journey. I remember bits of details about the family's life, but one detail, I remember clearly. No where else have I ever read about the reality and impact of how many professionals, experts, teachers and helpers stream in and out of our lives as special needs families. You get used to it, wrote the author. But at first the relationships, many short-lived, many longer, attachments formed--it creates another form of grieving and loss, she wrote. She's right. 

Tweeking the books in my bedroom hutch, just now, I see a title written by the father of one of our short-lived sitters. I try to recall where she is now, I think she has returned to her home state and is teaching. I think of Rebekah, our most recent sitter who was with us for almost two years. She has also left Nashville and will be teaching children with autism. I think about what all the sitters through all the years have meant to Grace and to me. Some more than others. These young women, most of them special education graduate students, were Grace's friends, older peers who were patient, understanding and willing to nurture, unlike most of her school-aged peers. I think about the doctors who were very good but moved on from Nashville. The speech pathologists, the teachers, therapists.

The author was also right: I got used to it. This saying hello and all too soon, goodbye. I think about the tremendous frustration I have had in finding another art therapist. A dozen years of making art, of group and solo shows, awards, local and national media attention and yet never one here that truly has the optimal training--art education plus intense developmental disAbilities training---to guide Grace. (That may be changing soon! Snoopy dance!)

I recall the psychiatrist that many misunderstood, ahead of his time and embroiled in a controversy fueled by misinformation and venomous, wrongly-accusing rumors. He did more than anyone to help my child. Amazing, innovative work. Now he is gone too, like the art therapist who left her home state for another where her master's pay was honored by the education system there, earning her $10,000 more than here.

Those two, an alternative medicine psychiatrist who used neuro-feedback and an art therapist. Those two, for those two--I still grieve the loss. The rest, left fond memories stacked tightly like vintage greeting cards bound by a rubber band. A collection, like the one my father kept of the cards his daughters gave him. A lifetime collection. A parade of memories, I have. Changing faces that I am grateful to have had in our lives. A life. A different life. With a parade of people. In. Out. In. Out....

The photo above originally ran with this Journey with Grace blog post.

Comments

[Leisa A. Hammett]

I didn't quite know where you were going at the start of this comment, Penny. But, yeah, good point. I do think they become attached, too. But, yes, it is different.

Hey, Rebekah! Thanks for commenting and we will look forward to seeing you when you return for a visit!

Oh, boo! Sabrina. I know I STILL feel indebted to our first OT. She got us over the crunchy texture issue. Before that, Grace was still eating baby food at age three. Thanks for reading and commenting.

[Penny]

A relationship with a professional is one-sided by nature. Their side of the relationship is business. A job. Putting that into perspective is a challenge for me, still. However, I grieve more over the broken relationships my daughter w/ autism experiences again and again as tutors and therapists come in and out of her life. It's their business. It's her life.

[Rebekah]

I have been thinking of Grace lately too. Miss you guys. I have a wedding in October in Nashville so I will definitely see you then if not before!

[Sabrina Pruitt]

I think I needed to read this today. We're three years into this journey and we've already had many come and go. I never imagined how many people would touch our lives and how quickly I would become accustomed to it. But today I was told that the OT that we've had for 3 years, the one who first got through the screams and found my little girl, is leaving the state. Oh, I am broken hearted.