Putting the Pieces Back Together   6 comments

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A glum Skylar cuddled with her confidant Rubie the Dog and played the you are a piece of me portion of Zedd’s song “Clarity” over and over on her iPad one night late last summer.  Meanwhile, her little sister Alyssa just bawled.  Their sorrow was justified because Miss Kelly, Skylar’s beloved ABA therapist, had just walked out our door for perhaps the final time.  She was off to pursue the prestigious Board Certified Behavior Analyst (BCBA) program at Simmons College in Boston and we, as a family, couldn’t have been more proud of her.  But we were also reeling, as Miss Kelly truly was a piece of Skylar and, by extension, us, too.

Miss Kelly promised to visit but if there’s one lesson I’ve learned both as a human services professional of fifteen-plus years and father of a child with autism for ten, it’s that goodbye for now usually just means goodbye.  Unfortunately, Skylar has learned this lesson, too.  My little girl was broken and there was nothing I could sincerely say to make her feel as though her pieces could be put back together.

Skylar seeks comfort from Rubie the Dog after Miss Kelly--alternatively her ABA therapist, big sister, best friend, and savior--leaves our home after her final shift

Skylar seeks comfort from Rubie the Dog after Miss Kelly–equal parts ABA therapist, big sister, best friend, and savior for almost two years–leaves our home after her final shift

Turnover is an unfortunate reality in human services amongst the people who actually matter.  For them, the pay is usually awful, the hours weird, benefits weak or non-existent, upward mobility limited, and appreciation from (too) many of their clients’ parents and employers lacking.  Complaints and blame thrust upon the people who actually matter, however, is generally plentiful, even when it’s not their fault. It takes a special person to be able to sift through all of this garbage and find fulfillment in their clients’ small, subtle gains (necessary for the big, noticeable gains their employer will invariably take credit for and profit from).  So what type of extraordinary person can not only rise above these drab, daunting circumstances but also excel?  A person like Miss Kelly.

I’ve been blessed with many wonderful therapists for my daughter over the past nine years but they mostly dealt with adorably harmless Skylar—the one who snuggled, laughed, and generally complied her way deep into everyone’s heart.  Adorably harmless Skylar, however, was not the version of my daughter that Miss Kelly was handed nearly two years ago.  No, for Miss Kelly, punches, kicks, pinches, attempted Brazilian Jiu-Jitsu submission holds, being screamed at, and epic tantrums over next to nothing were all-too-often an everyday reality of the job when working with my daughter.  Whenever I witnessed Miss Kelly neutrally absorb a beating from Skylar, a big part of me wanted to intervene and throttle my daughter:  How dare you treat somebody who cares about you so much so horribly, Skylar!  But my professional experiences had taught me long ago to stay out of Miss Kelly’s way and let her do her job. And do her job she did.

Skylar and Miss Kelly prior to my daughter's martial arts session. Even though the class was great for Skylar and preached non-violence, my daughter had a stretch of not following this important edict and Miss Kelly, a person whom she trusts as much as any in the world, was often the victim of her outbursts.

Skylar and Miss Kelly prior to my daughter’s martial arts session. The Peace/Love nature of her shirt represents unintended irony at that volatile stage of Skylar’s life. The martial arts class was an attempt to channel her considerable rage into something else and Kelly, despite sometimes getting the brunt of Skylar’s skills in this area, was still more than willing to help. This was in keeping with her willingness to do anything for my daughter.

Miss Kelly hung in there when so many others would have run away.  She saw her diligence pay off when my daughter finally turned the corner last spring (the culmination of which was detailed here http://diamondisthesky.com/2013/12/20/the-incredibly-true-story-of-my-daughter-with-autism-conquering-costa-rica/).  Such an accomplish not only produced an unwavering loyalty towards Miss Kelly from both Skylar and my family but also a likely co-dependency.  It’s hard to blame us, though.  We handed Miss Kelly our daughter’s very life and not only didn’t she drop it, she made it better against all odds.  How were we going to survive with her leaving?

Compounding our heartbreak was the fact Miss Julie, Skylar’s longtime BCBA, had left only a few months before.  While my daughter’s relationship with an overseer like Miss Julie obviously didn’t have the day-to-day intensity that it did with somebody always in the trenches like Miss Kelly, her loss had hurt us all, too—a lot.  Miss Julie had also inherited Skylar at her lowest point and been instrumental in helping her climb out of it, earning our eternal trust and devotion, as well.  My daughter loved Miss Julie as much as any BCBA who’d ever overseen her case as evidenced by her constant proclamations of “I want to be Miss Julie when I grow up” and often asked me where she’d gone. The truth was, she’d gone to do something better but how do you tell something like that to your own child?  My poor little girl was about to have a lot more questions with Miss Kelly leaving.

Both Miss Julie and Miss Kelly had promised to visit Skylar and I believed they had every good faith intention of doing so…just like past BCBA’s and ABA therapists had, as well, only to never come back.  I harbored no ill will towards any of these professionals, however, as I, too, had left similar positions with every intention of visiting the people who’d meant the world to me…only to find new people to whom this devotion also applied and no time to go back.  Again, in human services, goodbye for now usually just means goodbye.

Skylar and Miss Julie at last March's Team Skylar Fundraiser at Center Bar and Grille in Worcester. I consider this night to have started Skylar's climb back to a generally happy kid and, even though over 100 people were present, the most joy she got was from having Miss Julie and Miss Kelly there to celebrate with her.

Skylar and Miss Julie at last March’s Team Skylar Fundraiser at Center Bar and Grille in Worcester. I consider this night to have started Skylar’s climb back to being a generally happy kid and, even though over 100 people were present, the most joy she got was from having Miss Julie and Miss Kelly there to celebrate with her, which says a lot of about how highly she regards them.

I also held a certain degree of guilt over them leaving, even though I, from a rational standpoint, highly doubted their departures had anything to do with our service provider-parent collaboration.  Having endured overly critical/psychotic parents myself through years, I knew I wasn’t a difficult person for a professional to have around but that didn’t mean I was always easy, either.  When Skylar hit rock bottom last February, I abruptly insisted upon changes to her programming by switching her therapy hours from directly after school to the evening. My intent had been to provide my daughter a break in her day but I also knew this change risked Miss Kelly and/or Miss Julie being reassigned—as did they.  I believed they understood my ultimate goal was to help Skylar and keep them but, at the same time, how could they not have taken my risking their reassignment personally on some level?  I know I would have if I were them.  Had I been guilty of adding to the garbage they had to sift through to find fulfillment in their largely thankless job?  I, from an emotional standpoint, feared I had.

That’s why I was so relieved when Miss Kelly contacted me and my wife Jen on Facebook a few weeks before Christmas to set up a get-together with Skylar.  Relief, however, was mixed with caution, as I’d heard such things from others who’d worked with Skylar before (and said such things myself to people I’d worked with and their families) only for nothing to come to fruition.  Thus, I chose not to tell Skylar until Miss Kelly contacted me again to firm everything up a few days before Christmas.  I was ecstatic but my daughter’s initial and only reaction was typical Skylar:  “I want to go to the Ninety-Nine.”

A trip to the Ninety-Nine it was.  Miss Kelly and Miss Julie were due to arrive at 1pm but Skylar started looking out an upstairs window at our house at 11am.  The traffic was crazy because of last-minute holiday shopping and, when Kelly arrived at 1:10, Skylar ran downstairs, skipped “hello”, and went right to, “You were supposed to be here ten minutes ago and where’s Miss Julie?”  Miss Kelly, who knows Skylar as well as anyone, just laughed and hugged her, as did Miss Julie after she, too, was chastised a few minutes later.

I didn’t accompany the three friends to the Ninety-Nine but their experience also sounded like typical Skylar: “Sky told us she’s pregnant, drives a purple Saab, and is an airline attendant,” Miss Julie reported.  “Thanks for letting us steal your kid.”

Miss Kelly also enjoyed the reunion. “Skylar officially made my day as usual,” she said. “We laughed, we cried, we ate a lot of food. Thank so much, Sean and Jen, for letting Julie and I borrow her for a few hours.  She always knows how to melt my heart.”  But her heart wasn’t the only one that had been melted.

When Skylar got home from her outing with Miss Kelly and Miss Julie, she ran to Rubie the Dog and sat next to her bouncing with joy.  She had just learned that not only were Miss Kelly and Miss Julie still pieces of her– and her a piece of them–but also, for once, goodbye for now really meant goodbye for now.  She had been put back together.

Skylar walking Rubie--Pieces of Each Other blog

Posted January 13, 2014 by seandal in Autism

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6 responses to “Putting the Pieces Back Together

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  1. Totally get it Sean… These Aba”s and BCBA’s become such and intricate part of our family. There is such a void when the revolving door starts again. We miss them as much as our kids do….I look forward to another cut from Skylers diamond to read.. It will be my pleasure to share. xoxo

    • Thank you for reading and sharing, Shana! I totally agree. We’ve been blessed with some amazing people for Skylar through the years. It’s always tough to see them go but Kelly was actually the first person to move on that made us wonder if Sky would be okay.

  2. So true. It’s so hard to say goodbye to a family when you truly do become a part of their everyday- and they become part of yours! Keep the posts coming!

  3. I know for a fact that Julie and Kelly got more out of seeing Skylar that day then Skylar did! They miss her. We all do. Skylar always made my day when they would bring her in the office for a visit.. She is such a special girl and has so much to offer anyone who lets her into their life.

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