When Rain Hurts by Mary Evelyn Greene

June 4, 2010


Mudge Pond, Sharon, CT (Memorial Day, 2010)

June 4, 2010.  Peter leaves the house today upset because Sophie is singing.  Yep, singing.  At Pat’s insistence, he comes inside to tell me he hit her as they were getting in the car because she was practicing her song for Family Day.  And though I’m so tired of his sibling ambushes, part of me understands.  Peter can’t sing – he can’t remember the words, the tune, none of it.  For a child who genuinely enjoys music, this particular aspect of his disabilities must be incredibly frustrating.  It doesn’t help that I love to sing, that our family sings in the car together all the time, making up silly songs and challenging each other to compose an even sillier lyric than the last.  Peter tries, and Pat and I certainly work to include him, but his abilities fall short, a fact that’s becoming more and more apparent over time.  As each day passes, Sophie demonstrates with ease all the normal kid accomplishments she takes for granted but that Peter has to labor over systematically, even methodically, to achieve.  He resents her for it.  She’s a constant reminder of what he’s not, and may never be.  “My mom drank wine,” he’s starting to tell people, mostly other kids.  Plenty bright enough to comprehend that his brain is compromised, he’s beginning to make excuses, or at least offer explanations, for what is becoming increasingly apparent: that at times he’s cognitive, social, and physical clumsy.  Unaware of the impact his words has on people, especially strangers, I’m often compelled to chime in, for my own sake and the sake of the surprised mothers of the kids with whom he’s interacting. “He means his birthmother,” I say.  “We’re an adoptive family.”  Sophie once asked what was wrong with Peter and so I told her, in a simplified way that I hope was age appropriate.  Of course, she in turn told Peter, who previously never had thought to ask.  He’s too young, chronologically and developmentally, to comprehend what that means, but I believe he does know his birthmother harmed him.  It’s knowledge I wish he could be spared.  Her own teenage depression, foolishness, immaturity, indifference, or maybe just plain ignorance, has damaged our son, and therefore our family, permanently.  We go to hearing against the school district next week because it stubbornly refuses to acknowledge this very fact, that Fetal Alcohol Syndrome is synonymous with permanent brain damage and life long disability.  I don’t have the answers or the solution, but I do know his current school placement is beyond his reach, is negatively impacting his home behavior and therefore our lives, and is succeeding only in making him aware of what he can’t do, and will never be able to do, in comparison to his “typical” peers.  Right now he hits his sister when he feels inadequate.  With unrelenting zeal, he takes his frustrations out on her in the same way he takes his frustrations out on us, Lindy and even Grandma, the people he feels closest to and who in turn make him feel safe.  It’s an unsustainable cycle with an ever- widening circle of potential victims.  The bigger Peter’s world becomes, and the more he’s forced to blend into society before he’s ready, in the name of inclusion and integration, the larger will become his rage.  Today we leave for Virginia to see Dr. Federici for the third time.  On the one hand I can’t wait until he sees Peter because more than anyone else, he appreciates what monumental progress we’ve made with our son since he first met him, feral and dangerous, at the age of 4.  On the other hand, I’m worried what these latest battery of tests will reveal, and how his conclusions and recommendations will impact the course of the upcoming hearing.  The school will be quick to take credit for the progress we’ve made, sometimes with Peter kicking and screaming because we demand that he flex his brain, that he expand his potential.  I worry they’ll usurp our victories and claim them for their own.  Without our firm commitment to regimenting Peter’s home routines and expectations, and without Lindy’s skilled and compassionate interventions that help him organize his thinking and regulate his mind and body, I doubt Peter would still be in our home.  Dr. Federici taught us the tools to allow our family to stay intact and Peter’s team of medical doctors have given us the medications that allow us to put those tools into practice.  I’ll be damned if I’m going to let a bunch of ignorant, self-satisfied yahoos from rural New York pull us apart for sport.  I’ve been battling Peter’s causes for so long now that I’m actually looking forward to the face-to-face combat that the hearing venue is sure to offer.  It’s time this war is won.  You’ll know which side is ours because we’ll be wearing the white hats.

3 Comments »

  1. School doesn’t ‘want’ to get it. Funding goes elsewhere with another placement. Sets a precedent. Other special needs kids/parents will demand same, more funding out the door. Not your problem. Peter’s welfare paramount, as you know.

    Sound like time to report to State Dept. of Ed. and/or attorney. Sounds a like my kiddo’s school district.

    Very, very wrong what your son’s school district is up to.

    My daughter started out humming. Maybe Peter can be the melody? I’m pleased to read that he wants to sing. That is good.

    My thoughts are with you. I wish I had better suggestions for you. It’s just looking like it’s time for ‘hardball’ not ‘softball’. You’ve been nicer than I would have been to the school district personnel… Admirable.

    Comment by Lori — June 4, 2010 @ 4:36 pm | Reply

  2. BRAVO, Mama!!! I want to grab my white hat and take a joy ride up from NC!!! You ARE an amazing mom & dad and you better never doubt that! I work with kids with Special Needs and Advocacy is my middle name…So if you need some southern backup girl, you just yell out the back door REALLY loud, and I will grab my white hat and my team of “special needs” children and adults who are now learning to advocate for themselves and others with like issues, and we will load our posse up and take a “joy ride”!!! I get so fired up reading your posts and it makes me want to help these people and give them voice that much more. With love and prayers heading your way…keep on fighting mom (& dad, too)!
    CB in NC

    Comment by CB — June 4, 2010 @ 11:16 pm | Reply

  3. I would love to more, in more detail, what Federici has said about your son. Would you mind emailing me? I would love to take my son.

    Comment by Marcie pickelsimer — June 4, 2010 @ 11:29 pm | Reply


RSS feed for comments on this post. TrackBack URI

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

The Rubric Theme Blog at WordPress.com.

Follow

Get every new post delivered to your Inbox.

Join 773 other followers

%d bloggers like this: