When Rain Hurts by Mary Evelyn Greene

May 18, 2010


May 16, 2010

May 18, 2010.  Today is a somber, reflective day for us, especially Pat, because its the anniversary of the day he lost his first born, Joey, who at 12 years old was killed when a car struck his bicycle.  Its a private club to which no one seeks membership and from which, once inducted, no one ever quits – the club for parents who’ve lost children.  As an outsider looking in, all I can do is love him, and let him know I care, which is what I try my best to do.  It’s an anniversary he endures quietly and without companionship other than his memories of, regrets about, and unrealized dreams for his son, who by all accounts was a phenomenal boy.  Tonight’s news would’ve been a real zinger regardless of today’s date, but because Pat is particularly vulnerable, his reaction, unlike mine, exudes deep, cavernous sadness.  As for me, I’m mad, outraged, and looking for a brawl.  For Peter, for our family, and for my beautiful, wounded husband, whose had to endure the death of two biological sons and now is saddled with dealing with our adopted son, a boy who’s beautiful by his own right, but whose disabilities seem to evoke the very worst qualities in those charged with the responsibility for his education.  After dinner we discover that Peter wet his pants, but only slightly, during his afternoon ABA/VB session with Lindy, and that he opted not to tell her or us.  This new but hardly surprising revelation led to the nearly daily discussion we have with him about the need to tell someone when he’s wet, even if his underwear and pants are not completely soaked, because its unsanitary and makes our home smell like urine.  Because Peter has been more or less in a “good place” the last few days, he regrets his earlier decision to hide the truth and then adds an additional apology.  He tells us he’s sorry for wetting “big” during school today, which is news to us.  When I picked Peter and Sophie up this afternoon he had the same clothes on that he wore out the door this morning.  We’ve been sending Peter to school in underwear ever since CPS was called, with ample changes of clothes when accidents occur.  When I ask why he was wearing his same clothes from this morning if he wet, he explained that his teacher sent him to the nurse to change into his “spare” clothes, then she cleaned his wet-upon clothes so that he could change back before the end of the day, thereby eliminating the need for us, his parents, to know.  “This can just be our secret” is what he says his teacher tells him.  “Four times this did happen before, Mommy.  I’m sorry,” he says, shrugging his shoulders.  “But that’s how they do it now.”   He vows to tell his special education teacher in the morning that he can’t lie to us anymore, that he has to be honest, but we assure him that he’s not in trouble and that its our job to make sure the adults work together, not his.  I’m so distraught over this news because despite the denials that no doubt are being scripted by the District even as I write, I know its true.  Peter can lie with the best of them, its part of his disability, but his lies are simple, uncomplicated, and never involve multi-steps or imaginative deceptions.  If this were a fiction instead of our lives, this whole drawn out disaster called public special education would make prime material for the Jerry Springer Show, perhaps a special episode featuring obstinate and ignorant school personnel who love to hate informed, educated, and zealous parent advocates.  Maybe CPS could referee in case a fistfight erupts.  I can almost smile thinking about it.  If only Peter weren’t the victim.  And if only today wasn’t the day Joey died.

9 Comments »

  1. oh dear. messy and I’m not talking about the pants. that whole ball of wax is so tough for any kid (we have a daughter who still struggles) but she doesn’t have the confounded issues that Peter and you and your family navigate. wow. sanctioned lying – interesting elementary school concept.
    maybe you should just start sending dirty laundry to school in his back pack — oops, no i guess that wouldn’t do, but they seem so willing to “help out”!
    so good that he’s sharing with you though
    Holy Mary Mother of Grace!!

    Comment by Jenny — May 18, 2010 @ 11:24 pm | Reply

  2. Wow, that’s tough, not just for you but for Peter.

    I’m the person who sent you the video “What You Do with Pee” about children with RAD using urine to exert control.

    Upon re-reading some of your posts, I’m convinced that Peter’s urination problems are due to FAS and its effects rather than RAD.

    Children who have RAD without other learning or mental disabilities/challenges generally don’t urinate in school in front of all the other kids, thereby embarrassing themselves.

    In fact, they’re so good at controlling their urine that they could go the whole day in school without needing to urinate and then save it to use later if they’re alone with an adult whom they need to exert control over.

    But with Peter, it sounds like he really doesn’t have the control over his urine that kids with only RAD do. His urination is mentally connected, but I don’t think he uses it in the same way that kids with only RAD do. Maybe he uses it to exert control sometimes, but other times a mental stressor–externally induced or a thought that spontaneously pops into his mind–makes him lose control.

    I guess it’s really tough knowing when his urine is being caused by RAD and when it’s being caused by his other mental disabilities/challenges.

    Comment by MM — May 19, 2010 @ 2:50 pm | Reply

    • I think you’re right – its definitely a combination of his developmental delays and oppositional/attachment behavior. He can be distracted by a fly buzzing for hours, or alternatively, become so perseverative about something he’s doing that he won’t stop no matter what his body is trying to tell him. At the same time, he also urinates purposely – like when he pulls his pants down and pees on the floor or the walls, or takes his clothes off and pees directly onto his mattress – or those of relatives (they so appreciate the hospitality) – but you’re right, my guess is he saves these behaviors for family.

      Comment by whenrainhurts — May 19, 2010 @ 8:17 pm | Reply

      • The alternation between hyper-distractablity and hyper-focus is a hallmark symptom of ADHD. The term “attention deficit” is a misnomer. It’s more accurately “attention regulation disorder” because people with ADHD also exhibit hyperfocus like no one else. The problem is tht they can’t control when they’re hyper-distractable and when they’re hyper-focused and can’t stop in either case.

        Does Peter exhibit other ADHD symptoms? Unfortunately, ADHD, ODD, and RAD seem to often go together. I guess it’s logical since they’re all related to the frontal lobe.

        If so, a stimulant ADHD medication such as Concerta or Vyvanse may help. I’ve seen it work wonders for children with ADHD+ODD, but they didn’t also have FAS or RAD to the best of my knowledge, so the examples aren’t that similar.

        Comment by MM — May 19, 2010 @ 10:59 pm

  3. I’m so sorry for a difficult end to a very sad day. The repetitiveness of Peter’s behavior and the schools continuing efforts to undermine must be hard in the best of times and especially trying on a day such as yours.

    If it helps, we had the same type of sanctioned lying occurring with our son’s teacher. We had requested he not be given toys as rewards for good behavior because it fostered bad behavior such as lying, stealing and expecting a toy for any type of good behavior at home. We thought it had stopped until one day our son said he really wanted to bring home his lizard from the basket in his locker. What basket? The teacher had continued to give the toys but told our son it was their secret, that his parents wouldn’t allow rewards and that he could keep (hide) them in a special basket she made just for him. Ugh! We have stopped it now and are just counting the days until the end of the school year.

    I hope that next school year will bring changes for both our families and especially our sons.

    Ronda

    Comment by Ronda — May 19, 2010 @ 4:07 pm | Reply

  4. I love your blog. I am an adoptive parent; I adopted my child from foster care. He was placed with me when he was just ten days old (and was exposed to drugs, alcohol, etc., etc., etc.). I am also a teacher in public school…as an adoptive parent AND a teacher, I hope you sue the a** off your school district. Pardon my harsh language, but- OI!- the behavior of Peter’s teachers makes me SO mad. It.is.just.wrong.

    Comment by eileen — May 20, 2010 @ 9:47 pm | Reply

  5. Good humor. The CPS I know ‘down south’ lol here would let everyone punch it out – then blame the kid or mom in the mix. As far as Jerry Springer – well, my family has been advising me for ages to go on the Oprah show. It’s not just about my kiddo but about how everything has been handled here in Texas regarding my kiddo’s special needs. Since I’m originally Dorothy from Kansas :), ‘going south’ usually meant it was going downhill. And it has. The school district here suggested now that my kiddo’s grades have tanked, that they can address her ‘special needs’ at the end of the school year. They’ve given her a C in spelling. All of her homeworks shows mainly A’s. Interesting, ‘huh? So, I’m right there with you on the emotional level. As my mother has recently shared with me, since my father passed away on New Year’s, it seems I now have this Make My Day attitude. The question is who is first – school district, etc. I wish I had words of encouragement for you. It has been absolutely stunning just how downright evil some school personnel can be to these little ones. I keep wondering if it’s outright national origin discrimination (Russian kiddo), small town small minds, or just I’ve been blind to the reality of human nature for far too long… Well, the paperwork is started for turning my kiddo’s school district into the state department of education – once again…

    Comment by Lori — May 20, 2010 @ 10:40 pm | Reply

  6. Oh that burns me up about the teacher encouraging lying. My son’s 2nd grade teacher did the SAME thing! At the end of the day, she would “script” him on what to say to me. “you’re going to tell your mom that you had fun in the assembly, right?” When i know full well that he can’t handle assemblies. So when he was melting down at home because they brought him to an assembly, they thought he wouldn’t tell me that it was hard for him!
    i sent a letter, and copied everyone principal, head of CST, county supervisor of special education, and the state head of disabilities and told her to please stop encouraging my son to lie to me about his school experiences as we had a “no-lying” rule in our house. talk about corrupting the morals of a minor!

    Comment by Elizabeth — May 22, 2010 @ 2:31 pm | Reply

    • I have not yet taken this to the state – thank you for giving me the idea – I think I’ll add that to my “to do” list. I’m sorry you’ve had similar struggles,
      but it is nice to hear we’re (as in all of us) aren’t alone in this – cuz it sure seems that way sometimes :-)

      Comment by whenrainhurts — May 23, 2010 @ 9:50 am | Reply


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