When Rain Hurts by Mary Evelyn Greene

August 14, 2010

August 14, 2010


August 14, 2010

August 14, 2010.  Peter’s difficult week continues.  His entire person begins to undulate, vibrate, and gyrate, sometimes simultaneously, at the slightest correction or request.  When he’s like this, his body language resembles more of a personality-disordered belly dancer high on crack than a 9-year old boy.  Our hearing recessed earlier than expected yesterday, allowing me to pick up the kids from my friend’s house in time for Lindy and Peter to have their regularly scheduled session.  That’s the good part.  Routine is key to keeping our son in his happy zone.  The bad news is that we now have one more day of hearing scheduled for next Thursday.  When Lindy came up from the basement at the end of the day, she was shaking her head and laughing to herself.  “He just can’t keep it together right now, Mar,” she says.  “Whew!  He’s feeling it, let me tell you.”  What she means is he’s feeling the stress.  The stress of the hearing, the unspoken worry that hangs over our summer like an angry storm, his recent birthday and upcoming party, and the transition with which he must cope now that summer school ended yesterday.  A few seconds later he leaps up the stairs and catapults himself onto the couch, nearly knocking over a lamp, a low-pitched moan accompanying his every move.  Lindy had plans to eat out with us – we were supposed to be celebrating the end of the hearing, so she reminds him that the two of them could stay home while Sophie, Pat and I go to the restaurant if he can’t pull himself together.  Luckily, he recovers.  Once he was calm enough, I pull him aside and ask him to think about why he’s had such a difficult week.  This is something on which we’ve been working  – his ability to recognize, at least to some extent, what triggers his behavioral breakdowns.  He’s made incredible progress in this area, which makes me very pleased.  “It’s my birthday coming up and school got over,” he offers meekly.  I watch as his left leg wags to some interior rhythm.  Though I’ve corrected the mistake a thousand times, he keeps calling his birthday party, which is tomorrow, his birthday.  Peter knows he doesn’t enjoy a loud affair with lots of kids, so he decided to invite three friends for cake, a movie and then the local arcade.  A boys afternoon out.  But the anticipation is more than he can manage.  “You’re upset that summer school’s over?” I ask.  His lip trembles as he nods his head.  “I miss Miss Katy forever.”  And then a single tear hurdles down his face.  He made a real connection with one of the teaching assistant’s in his summer TEACCH program (which is called PEACCE where we live).  This is not a minor thing.  Peter struggles with and resists intimate feelings just as vigorously as he avoids touch and noise.  Strong emotions overload the unbalanced and carefully guarded way in which he allows the world to interact with him.  The fact that someone he’s known for 6 short weeks has been able to wiggle her way into his heart is amazing and cause for celebration.  So we talk a few minutes about why its okay to feel sad about leaving someone you care about but that because of their friendship, memories of him will always stay with Miss Katy and he will always have his memories of her.  Maybe a little too conceptual for Peter, but he hangs on every word nonetheless.  I can tell, though, that he’s still gearing up, I’m getting better and better at reading his signs, and so I wait for him to continue. “Okay Mom,” he says.  “But I don’t want four grade!  I want summer school.  I get smart there,” he proclaims as tears begin flowing in earnest.  “And I’m dry,” he whispers.  Only my anger, and my deep commitment to not reveal it, at least openly, to our children, keeps my own eyes dry.  Our son is smart enough to know that he’s found a place where he fits in, where he can learn at his own rate and experience the joy and satisfaction of completing his work himself, but its not within our control to send him there.  “Everything is quiet, Mom, and the teachers don’t let me be wild.  My body feels good.  I’m good here!” he cries.  And then I ask, “which school do you think is better for you to be at all the time, the summer school or your regular school?”  His unequivocal answer is summer school, a program modeled after the TEACCH methodology that’s run by a public corporation formed by New York State to assist local school districts.  Much of our town has puzzled over why the school won’t send Peter there year-round.  I always assumed it was a budgeting issue but after yesterday, after hearing it from the horse’s mouth, I now know otherwise.   Now I know the cost of sending Peter to this program year round is equivalent to the cost of maintaining him in an inclusion classroom.  So what in the begonias is going on here?  Are school districts now allowed to mete out revenge against parents that challenge their collective wisdom by withholding appropriate, cost-effective options to their disabled children?  All I can say at this juncture is that I hope the injustice and heartache we’ve suffered, that the harm our child’s endured, is an aberration and not an epidemic.  I can feel myself revving up.  Although I’ve done a lousy job of protecting my family against this particular cancer, I’m fairly skilled at safeguarding the rights of others.  Bullies should not be tolerated, whether encountered in childhood, family, career, or government.  Peter’s going to a birthday party today for a boy whose looks he can’t recall, though he’s known him since first grade, because they haven’t seen each other since June.  Pat and I use the rare opportunity of Peter’s all-day absence to spend some special one-to-one time with Sophie.  We take her fishing at a nearby lake, where she gets the chance to try out her new pole, a birthday gift from my sister Patty.  Unfortunately, because Pat and I have no idea what we’re doing, the equipment remains unchristened.  We have a great time anyway, watching Sophie wrestle mammoth frogs on the shore as Pat and I continue in vain to snag something, no matter how miniscule, on the line.  Later we stop by a favorite creek and let Sophie catch minnows with her net.  We share little private jokes as Pat skips rocks and I take photos.  Sophie keeps interrupting to ask what we’re laughing about and we playfully shush her away.  The subtlest hints of fall are present, a slightly different quality in the air, a dusty darkness to the leaves, the way the water sits low and lazy, and we’re happy together, in nature and with each other.  Those who wish our family ill, who try to test our commitment to our children, even our marriage, ultimately will fail.  I believe this today.  I’m reading a book right now entitled the Boy from Baby House 10.  It’s about a disabled Russian orphan, Vanya, who now lives with his adoptive mother in Pennsylvania and will soon be heading to college.  The Russian system of government, with their still Soviet-era concept of family and obligation, almost rubbed this boy off the planet by assigning him, at age 6, to permanent bed rest (i.e., cage) at an adult insane asylum.  The orphanage and health authorities did this even though he had a lively mind and a reputation for charming anyone honest enough to notice with his wit, compassion, and intelligence.  Decisions regarding this child’s life, the book reveals, often hinged on personal, even petty, alliances and hostilities.  I can’t help but think of our situation as I finish this book, which is both horrifying and uplifting.  We liberated Peter from Russia, where surely he’d have met a similar fate, only to have the fragile egos and trivial grudges of American public school officials dictate to our family whether and when he will be blessed with an opportunity to thrive.  It took an army of people from diverse backgrounds and nationalities, and who were strangers to each other, to save the life of that disabled but vibrant youngster from Baby House 10.  We thought the saving part of Peter’s odyssey ended on October 25, 2004, the day our children’s adoptions became final.  But apparently, our son’s in need of an encore rescue.  Who, in the end, will serve his cause?  Who will be part of Peter’s army?

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8 Comments »

  1. I don’t know who you are 😉 I was just going thru emal… I am part of the FAS listserve and stopped to read your writing. You are gifted. I am the mom of am adopted child.. Her mother lived on the streets of Las Vegas drinking and doing 2oz of crack cocaine a day. She was our 19th foster child, the one we adopted. She is a fas child, plus blah blah blah…..she is 9yo and I’ve had to homeschool her exactly due to what you have written about, peoples petty stuff. I have found a public school and principal willing to work with us, she will start in the next weeks, only 1 1.2 hrs a day, per her therapist, anywayy, I’m nervous as all about it, but hoping …. Just wanted to thank you for your honesty, you will be on my prayers…I LOVE the name of your blog. Thanks, debi

    Comment by Debi — August 14, 2010 @ 9:48 pm | Reply

  2. Hi Mary– I love the photo above of Sophie with the frog- her smile is so adorable!!!! It’s wonderful that Miss Katy had such a profound effect on Peter this summer and you did a great job of explaining that he can think about Miss Katy and that it’s fine and normal to be sad when you miss someone. God bless you and Pat for your love , devotion, and perseverance in raising Sophie and Peter.

    Comment by Shirl DiGugno — August 15, 2010 @ 12:09 am | Reply

  3. we had the wiggly body body language with overwhelmed mind when young. now my son still thinks one thought at a time, plans one task to perform with focus or converses on one topic at a time. he is 24 years old – and had all the classic intellectual deficits since a baby. some how almost 2-1/2 decades later his body is calmer, his scrawniness still extreme, his face still deformed, his gait rather loping and his mood rather good in this calmer body. we get what we get after all is said and done. college/no college. employable/day activity instead. sheltered dwelling/semi independent living. no matter how much MAJOR WORK AND ADVOCACY we put into the situations, our children were handed the equipment they were handed and so some of what they can achieve is finite, limited, yet ordinary to them and normal for them. their norms. sounds to me that the school which is working for him is the one worth going after in due process and to home school him til then. un-school the damages they have done while he is in your care not theirs and return to the district when they are in compliance with his his health care needs in education – that is a safe and sure environment where he can learn, grow, thrive, trust and enjoy success geared at his level of abilities. my 2cents anyhooo. lindalee

    Comment by lindalee soderstrom — August 15, 2010 @ 12:28 am | Reply

  4. Again, Mary, you are remarkable. As is Peter. He is figuring it all out. Which is a credit to you and your husband. And to him.

    Chris

    Comment by Christopher Duncan — August 15, 2010 @ 7:12 am | Reply

  5. I’ve been reading your website for some time now. I also have a son and daughter adopted from Russia in ’03. My 8-year-old son has FAS, seemingly mild but with definitely delays and disabilities. My 7-yr-old daughter is not affected. My thoughts and prayers will be with your family. I can’t imagine your school system being so nuts! Peter is obviously thriving this summer – as you say, even he knows it! – and my prayer is that he will able to continue with the PEACCE program. Your strength is amazing. Love, Tamara

    Comment by Tamara Grant — August 16, 2010 @ 10:36 am | Reply

  6. Sign me up. Fighting for our children seems like a continuous process. Your love of Sophie and Peter shines through it all. And yes, I could teach you to fish. 🙂

    Ronda

    Comment by Rodna — August 24, 2010 @ 11:59 am | Reply

  7. someone recommended your site to me. i am glad they did. i will have to look up that TEACHH Method you talk about. my kids are from russia as well. my 5 1/2 year old had a diagnosis of adhd, but now has a diagnosis of PDD-NOS and they are not sure about mood disorders. my 4 1/2 year olds mother drank through preg. so FAS is her train. I am sorry you are going through all this trouble. I am hoping I made the correct decision for him as he begins kindergarten this fall in gen. ed. with a shared aide. he was in PSD with a 1:1 aide. It was gen ed. or LLD class K-1. But he is very bright. I didnt want to hold him back. His aggression is what is holding him back. I dont know what will be. I am afraid of the ostracizing he will undoubtedly get as the year progresses. I am torn.

    Comment by Melissa — August 30, 2010 @ 2:38 am | Reply

  8. It is a tragedy that our hard work to bring these children home doesn’t end at the arrival gate. My daughter, also from Russia, has RAD and at times it has been a nightmare to get the school district to help. Fortunately for us, we moved to a community with a school district that recognizes RAD and we were able to get her on a 504 plan. I am a full believer in it takes a village to raise a child…but it also takes a village to keep fighting for the rights of a child. Fight the school, get an education attorney well schooled in fighting for the rights of kids with IEDs and 504s. The school is just hoping you will silently slink away. Don’t give them the satisfaction.

    Comment by Lanita — August 31, 2010 @ 11:31 am | Reply


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