When Rain Hurts by Mary Evelyn Greene

June 7, 2010


Jay, Peter & Sophie (Georgetown, June 5, 2010)

June 7, 2010.  Pat and I let the children sleep late because we didn’t get home from our neuropsychological testing weekend until 10:30 last night.  Bad weather and beach traffic conspired to rob us of a swift return.  We hiccupped along the highway in stops and starts, the windshield wipers frenzied with effort, as the kids watched movies on the portable DVD.  Lindy made the trip with us.  The inevitable lulls in conversation left more than enough time for Pat and I to immerse ourselves in unspoken hysteria.   Two years and one month ago, Peter’s IQ was in the low average range.  After a long day of testing, Dr. Federici informs us our son has lost significant cognitive ground since he saw him last in 2008.  About ten points in fact.  His IQ is now considered borderline, he is having visual and auditory delusions/hallucinations, which we unfortunately suspected, and our son has made no academic gains whatsoever in two years.  Our boy, to use Dr. Federici’s words, is stagnating academically and deteriorating neurologically.  His brain is not being exercised and its dying, slowly but surely. That is the bad news, and its devastating and hard to hear.  But with the help of Lithium and our imperfect but devoted efforts at home, Dr. Federici also saw, for the first time, the sweet, loving, and compassionate child I’m honored to call my son.  That in itself is a major miracle, and one I mustn’t overlook in the midst of our grave worries.  Peter was nothing short of feral, a regular jungle boy in madras shorts and fisherman sandals, when we first drove out of sheer desperation the six-hours to see Dr. Federici in May 2006.  He believes we’re nearing the finish line, if not quite over it, in terms of solid and secure attachment.  Given the extent of Peter’s deficits, and all we’ve suffered and endured, my eyes filled with tears to hear this glorious pronouncement, even in the midst of Dr. Federici’s accounting of our son’s cognitive decay.  Our Due Process Hearing against the school district starts Wednesday.  I don’t hold out much hope that the school will suddenly see the light and acknowledge it can’t meet our son’s needs, that having him sit through the day and do as he’s told, without an ounce of understanding about what he’s doing or why, is literally causing deterioration.  But strange as it sounds, I think I’m reaching some kind of peace about our situation.  Peter will not be going back to that school.  He can’t afford to lose any more IQ points and we can’t afford to have CPS come knocking every time we get in their faces about the inadequacies and misplaced emphasis of their efforts.  Dr. Federici says the crime in all of this is that our son is educable, that he can learn and he can make progress.  But the few hours a week Lindy works with Peter, one on one, using verbal behavior and other neurocognitive rehabilitation techniques, isn’t nearly enough to maintain his functional skills.  He needs Lindy-like interventions around the clock, all day long, but there’s no way we can meet those needs privately.  Lindy is too busy, she teaches severely autistic children all day long, and we are plumb out of funds.  But we’ll find a way.  We’ll either prevail at hearing or I’ll do it myself.  If we can take a feral child and transform him into the sweet, loving person he is today, especially when someone is with him, one on one, to help modulate his mood and impulses, we can improve his brain function.  None of this is rocket science.  Peter is brain damaged.  He’s operating academically and socially approximately 3 years behind his peers.  So that’s where we start.  We find out what in fact he does know, what he’s able to generalize across different settings and without being prompted, and we build from there.  And when it gets too tough, when I think I can’t do it anymore, I have to remind myself how far we’ve come.  I’ll remember back to Saturday night, when we sat in The Tombs, eating dinner with my nephew Jay, who is now a rising senior at Georgetown.  A young man whose brilliance of mind and heart shines uncontrovertibly bright, he was sandwiched between Peter and Sophie, happily indulging his little cousins as they clamored for every ounce of his attention.  Peter now belongs, and he knows it.  We’ve given him that.  He has a family who loves him, who’s more or less hearty and jovial enough at least to try and laugh when he exasperates them, which is by all accounts often enough.  He’s no longer alone, that tiny boy in Russia fighting for his own survival, chubby little toddler hands, thanks to FAS, tied behind his back.  He’s part of us and he’ll never have to fight to survive again.  It’s our job now, and though it’s the toughest work I’ve ever done, I’ll never abandon him.

11 Comments »

  1. Congratulations. Peter belongs. Peter is attached (to use a cold psychological term). I almost entirely understand how wonderful this is. Neither Katie nor Becky have FAS, but belonging was and is key to them both.

    Chris

    Comment by hudsonvalleyeducationadvocates — June 8, 2010 @ 9:58 am | Reply

  2. I just read the January 9, 2010 entry, and the comment that someone made about faith. For me faith, higher power, god, the great mystery, is available to support me when I get scared and to get me through things I cannot do myself I trust in his/her/it’s support. This (whoever, whatever) all came to me just in time before Katie’s behavior exploded and my wife and I lost our jobs in large part because of the explosions (and believe me a 14 year old girl can explode.)

    I would hope for you that you have a similar sense of support/faith/belief. Unlike most things I write about, I find that language breaks down when I talk about the supreme being.

    Chris

    Comment by hudsonvalleyeducationadvocates — June 8, 2010 @ 10:22 am | Reply

  3. Oh Mary, this entry makes me cry!
    “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.”
    “that having him sit through the day and do as he’s told, without an ounce of understanding about what he’s doing or why, is literally causing him to neurologically deteriorate.”

    I am SO right there with you!

    Please feel so lucky that you have a choice; you can keep him home and end the insanity. I so wish I had that choice…

    Comment by Elizabeth — June 8, 2010 @ 10:55 am | Reply

  4. Oh my…..if I had just a penny for how many times I’ve said “…but I have to look at how FAR we’ve come…” :) With both of my FAS boys, I’m choosing not to limit them to the IQ’s they’ve been assigned (both “Intellectually Deficient”). Having been in the professional world, I learned that IQ’s are not the keys to success! You keep plugging along; you’re doing a great job. Don’t forget, too, that one of the best things you can do for your kids is to take care of you (especially for those kids that can be so tough to love). :D

    Comment by Julie — June 8, 2010 @ 12:18 pm | Reply

  5. The good news outweighs the bad news here. And you’re right, you will prevail. I have no doubt that you have the determination and love required. Peter (and Sophie too) are lucky to have you and Pat. I imagine that in spite of all the difficulties you feel equally lucky to have them. Thanks for sharing, Mary.

    Comment by Kendra Bonnett — June 8, 2010 @ 5:02 pm | Reply

  6. Mary – sorry it was such a rough trip Hopefully his report will help you with your hearing. I am just shocked you can’t get an alternative school placement. In NJ you would be fighting to have him mainstreamed. I hope you can bathe in the happiness of having an attached son. That will bring happiness to his life during the hardest moments.

    Keep working with him – he is a beautiful boy.

    Comment by Janet — June 8, 2010 @ 5:16 pm | Reply

  7. *hugs*

    Comment by Kristine — June 8, 2010 @ 10:04 pm | Reply

  8. This is very moving and your story gives me hope for humanity as a whole. The only things that can save us all is LOVE, for ourselves, for each other and for everything to which we are connected – which is ALL THAT IS. Thank you for sharing your love with us. Inspiring and uplifting.

    Comment by Rosmarie — June 9, 2010 @ 10:17 am | Reply

  9. Mary: I am Delia from Pepin’s. Just want to say
    how lovely you are and how proud your parents would
    be. I admire you and your husband. Keep on loving.
    Lots of besos from St. Pete.

    Comment by Delia Cortes — June 9, 2010 @ 1:20 pm | Reply

    • How wonderful to hear from you – and thank you for mentioning Mom and Dad. I miss them so much.
      Please give Mr. Cortez a great big hug for me – I miss you all! Love Mary

      Comment by whenrainhurts — June 12, 2010 @ 11:49 am | Reply

  10. It appears that the ‘evidence’ exists about Peter’s school not helping him in any way. I am sorry.

    More importantly, possibly… is Peter’s showing of his love for his family. I’ll never forget the six month mark of when my little one had been in the states, and was no longer spitting in my face, biting me, hitting me, throwing things at me, etc. all in the sheer terror of her adaptation to life outside of the orphanage…

    Love always wins doesn’t it? The school district will just have to get their act together won’t they – even if the state has to advise them of such.

    Keep the faith Mary. :)

    Comment by Lori — June 10, 2010 @ 4:57 pm | Reply


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