When Rain Hurts by Mary Evelyn Greene

January 23, 2013

January 23, 2013


Visting the new camels at Green Chimneys with Aunt Patty (Jan. 2013)January 23, 2013. One of the many challenges of
 raising a child like Peter is coming to terms with the unequivocal 
realization that his needs supersede all others. No matter
 what the circumstance, if he’s not in a good place – in terms of
 mood, comfort or temper, then those within the perimeter of his 
reach will suffer too. There was a time when I rebelled
 against the restraints that this conclusion imposes, but I now
 understand that resistance is pointless. I have a number of
 major decisions to make in the next few months, and their impact on 
Peter is forefront in my mind. A few years ago I wrote a
 chapter for a special needs parenting anthology devoted to how I
 finally came to terms with the fact that I had to stop pouring
 every ounce of energy, and all our dwindling finances, into 
improving our son’s fate. I had chased the elusive “cure” for
 so long – and jeopardized the rest of the family’s well-being in 
the process, but I knew it had to stop. Although I wasn’t
 giving up on Peter, I had no choice but to acknowledge that my 
frenetic quest to make him whole was tearing the rest of us 
apart. I’ve tried to honor that reality, though some days I’m
 more successful than others, and Peter continues to do just as well 
(or not) as when my days and thoughts were 100% consumed with 
healing him. I still believe what I wrote in that anthology 
(Easy to Love But
 Hard to Raise), and I think it’s a confession that 
many parents of challenging children might be relieved to hear, but 
what I’m grappling with now is different. Any decision I make
 for myself – or that impacts the rest of the family, by definition
 must 
take into account, first and foremost, its affect on Peter.
 The few people I’ve spoken to about these upcoming decisions –
including some family members, urge me to stop thinking so much
 about his needs and focus a little more on everyone
 else’s, even my own. It sounds a lot like the 
argument I posed to myself when I wrote for the anthology.
  But it’s not – in fact, it’s completely different. I will 
never have the luxury of making a decision that omits an intricate 
analysis of how my choice might impact Peter.  I’ve been very
 optimistic in recent months about our son’s progress and our 
ability to transition him back into a home-based program. I
 detest the fact that on most nights, instead of kissing his 
forehead and tucking him in, he and I are forced to say goodnight 
over the telephone. I want him home; it’s that simple.
 But intrusive thoughts are again encroaching on the landscape of
 his mind, and this resurgence of psychiatric instability is a cruel 
reminder that hopes and dreams do not always proceed in a parallel
 course with reality. Peter hurt his sister a few weeks ago
 and he’s hearing voices again, voices that are violent and scary, 
both for him and us. My gentle son, who wouldn’t normally harm
 a flea, is doing his best to fight off the demons buzzing in 
his brain, at times with deviant intent. For a few days, a
 few weeks ago, he lost that battle. Sophie is working to
 shake off the trauma and I’ve gone back to timing my bathroom 
breaks in a way that protects against an even 30-second window of
 unsupervised opportunity in case the directive of the voices are
 stronger than Peter’s ability to reject them. It was an unwelcome 
but undeniable wakeup call. Peter is not yet ready to leave 
residential school – it’s not safe. He acknowledges that the
 voices and visions are more frequent at home and he told his social
 worker that he thinks it’s because he isn’t surrounded by staff the
 way he is at school. Idleness and alone time are his mind’s
 arch enemies. For Peter, unstructured play in the family room
 while I make dinner in the kitchen – 20 feet away and within easy
 sight and sound of each other, sometimes triggers overwhelming anxiety that 
in turn can trigger aberrant, potentially dangerous thoughts.
 Constant activity coupled with constant staff presence helps to 
keep his wandering mind in check. It’s amazing that Peter can 
articulate this – that he now possesses the insight and the 
language, but it’s also profoundly sad. It means he’s not yet
 ready to come home, it reminds me that whatever decisions I need to
 make in the next few months must take this into account.
 Parents never are free to act solely in their own best interests –
its part of the bargain we honor in exchange for the great
 privilege of motherhood and fatherhood, but parents like me – of 
kids like Peter, relinquish so much more. The reality 
of these circumstances pit financial security against physical
 safety, marriage against parenthood, one child’s needs against a 
sibling’s. There’s a course to chart but its one of discrete, 
not boundless, possibilities. I accept this – it’s an 
immutable fact, but I don’t much like it. When Peter emerged 
from his psychotic rage – the first, by the way, he’s had in almost two 
years, his exhausted body convulsed with waves of horrifying 
self-reproach. “Why,” he implored, angry self-inflicted
 welts rising on his cheeks as he sobbed, “why couldn’t you stop me,
 Mommy?” If only I could have answered his anguished question. If only I could have stopped him. Maybe then we wouldn’t be in this
 position.

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10 Comments »

  1. Oh, my heart breaks for you and for Peter. Obviously no one can help you with your decisions, but keep in mind that there is no one perfect decision–only the best one given the circumstances that you know at that one point in time. Hugs.

    Dawn Davenport
    Creating a Family

    Comment by Dawn Davenport — January 23, 2013 @ 2:55 pm | Reply

    • Thank you, Dawn. We’ll get there – I’ll get there. It’s just not easy. It’s comforting knowing that others “get” it. Take care – Mary

      Comment by whenrainhurts — January 23, 2013 @ 4:41 pm | Reply

  2. You and Peter and the rest of your family are in my prayers. These are not easy questions. If only they were. Cyber hugs.

    Comment by Bridget — January 24, 2013 @ 11:01 am | Reply

  3. In my experience, and that of many others with older kids, the psychotic episodes and the aggression only tend to accelerate with age. My heart goes out to you, but sometimes our kids need the kind of intensive therapy and structure that can only happen in a residential treatment setting and if that is the case then we need to provide that for them to keep them safe.

    Comment by Errin Weigel — January 24, 2013 @ 6:42 pm | Reply

  4. Errin’s comment is full of wisdom. The only thing I would add is that, although we might be willing to sacrifice our own lives and happiness for a special needs child, we do not have a right to sacrifice the happiness or safety of others’ lives.

    Comment by Kathleen — January 26, 2013 @ 6:13 am | Reply

  5. Thank you Mary for sharing your thoughts – take time for healing while Peter is in residential care. Your love and journey for and with him will always be there and even into adult hood it will continue… so during this time discover things each member of your family needs and things you need and figure out a way to keep them available for your health and your family’s health and safety when he returns. All of us need to be refueled.

    Comment by Jodee Kulp — January 29, 2013 @ 7:50 am | Reply

  6. What are you gaining by suing your sons former public school? You said yourself that your sons needs were to complex for private school.. What makes you think his needs are not to complex for your local public school? Sometimesl public schools are just not the right place for some kids. I understand that your son is in residential treatment right now and it sounds like that is where he needs to be. Not just to keep himself safe but to keep others safe (from him) too.. I have a lot of sympathy for you.. I’m just trying to understand..

    Comment by Montoya — January 30, 2013 @ 5:28 pm | Reply

    • Montoya, I’m not sure I understand your question. We sued our school district because they refused to either develop an appropriate program for him in the public school or send him to an appropriate program outside of the district. Its what they were required to do under the law but they failed. His needs were too complex for the public school – that is the point, but our school district was not admitting that and/or they simply didn’t want to foot the bill for a more intensive treatment/educational program.

      Comment by whenrainhurts — January 30, 2013 @ 5:41 pm | Reply

  7. We have 2 adopted daughters. One from Kazakhstan our second from kemerovo Russia. We made the hardest decision to place our daughter in residential care. We did it out of the love we have for her. She deserved to get the help she needed. We moved out of state to get her treatment .we take her home on weekends. She will now be transitioning home after 2 yrs! We totally understand how it is to say goodnight over the phone. It is heartbreaking. I could go on and on. We adopted our daughter at age nine. She is now 15. Sure there will be challenges but she has not raged jn a yr. And a half. She has made huge progress! She is able to attend a regular middle school where her sister attends. Our journey continues…..

    Comment by lori h — February 17, 2013 @ 8:32 pm | Reply


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