When Rain Hurts by Mary Evelyn Greene

June 4, 2012

June 4, 2012


Assateague Island, MD (May 24, 2012)

June 4, 2012.  We’re 10 days home from seeing Dr. Federici in northern Virginia for Peter’s bi-annual neuropsychological assessment.  Dr. Federici’s a significant reason why we’ve come as far with our son as we have, his evaluations providing a litmus test upon which we measure past efforts as well as an invaluable roadmap for the future.  These visits are difficult for Peter, though.  They’re demanding of his focus and attention in a way he’s not quite equipped to handle, and the information gleaned from them hasn’t always been easy for us to process.  Words and phrases like psychosis, autism, lifetime care, FAS, significant support, mood dysregulation, and cognitive deficiencies  – they’re difficult to swallow and enough to scare anyone.  But those particular descriptors didn’t loom so heavily this time.  Something has changed – something really significant, and great.  The very best part is that Pat and I knew it before Dr. Federici even told us.  Peter is better.  Not just a little bit better but about 40% better in every area of functioning (except academics where there’s been little gain).  I’ve never seen Dr. Federici look so pleased.  I couldn’t decide whether he was beaming like a proud papa or looking more like a small child ready to bust with exciting news.  Either way, we sat in his office after the testing, relaxed and full of banter, trading complements and accolades like a small band of combatants who’ve just conquered a formidable enemy.  After almost 8 years of constant effort and struggle, we may have turned the corner with the boy I once described – quite accurately, as feral.  Today Peter is happier, more centered, more trusting, showing better reasoning and problem solving skills, demonstrating improved language skills, and exercising more independence and ability to adjust to changing circumstances.  Dr. Federici credits this positive leap to two things: the cumulative effect of our efforts and our success in finally getting him placed in an appropriate therapeutic environment.  The only asterisk that looms over my otherwise warm and glowing feeling is the knowledge that Green Chimneys School is achieving what Pat and I could not.  I realize that we’ve brought Peter a great distance, and in some ways I recognize that many others might have given up where we persevered, but I still ache with the wish that this last, most victorious push could have been achieved in the intimacy of our home.  I’m thankful that Green Chimneys is achieving what we couldn’t, but the truth is, I’m also a little resentful and jealous.  Peter wants to be home, he clings to me during our visits and his eyes well up with tears on our drive back Sunday nights.  It’s hard to reconcile this Peter with the boy who used to smear feces on himself and spit on me;  but I suppose knowledge of our troubled past only makes the hopefulness of the present that much more luscious and remarkable.  The only problem is that I want to whisk my son away, back into my arms, to the love that’s grown as steady and unstoppable as the rising sun, but I know I mustn’t.  Sometimes I feel like an estranged mother contemplating parental kidnapping.  There’s a cost to progress, at least in our case, and it comes in the unwelcome form of mutual heartache and homesickness.  Peter needs the 24/7 supervision, the 1:1 staff who help keep his impulses in check, his distractibility minimized, and who constantly talk him down from his various tirades and skewed perceptions.  We can do this at home – I’ve become particularly adept at various strategies, but I can’t sustain it indefinitely.  I realize that it’s only a matter of time – 10 days, maybe 2 weeks, before Peter’s challenges begin to outwit my stamina, patience, and commitment.  I realize, with more than a little melancholy, that the reason he’s 40% better is because Green Chimneys and its plethora of strong young men and women on 8-hour shifts don’t give his mind or body an opportunity to decompensate or unravel, at least not for very long.  I should be grateful for this and in fact, I am.  It just stings a little.  A wise doctor told us almost two years ago that Peter needed a system of supports, a circle of providers that extended further and deeper than two parents could simulate or sustain.  I need to realize and believe that Green Chimneys’ victory is our victory too, that the endeavor is a collective one and that it’s not an either/or proposition.  Although my mind knows this to be true, my heart requires a little more convincing.  After the testing, we drove to Ocean City, MD for Memorial Day Weekend and spent most of the time on Assateague Island, enjoying the beach and the wild ponies.  Watching Peter navigate the cold, crashing waves, the gritty sand, the always changing conditions of the shore, without the stiff and bracing posture, his usual guarded, super-sensitized body language, truly was exhilarating.  For the first time ever, he wasn’t the boy on the beach with obvious issues and challenges.  He was just a boy on the beach, a wonderfully happy boy, who alongside his sister, was filled with the ordinary joys that we as parents all hope permeate our kids’  childhoods.  When we got home, and Peter was tucked into bed before going back to school the next morning, he hugged me fiercely and asked, “Did I have a good trip, Mommy?”  Knowing he was asking about his behavior and not whether he had a good time, I smiled into his eyes, fighting back my tears.  With as much composure as manageable, I assured him that he did.  And it’s true.  Peter, our beautiful, enigmatic, and resilient son, had a wonderful trip indeed.

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7 Comments »

  1. Good to know that things are better for Peter. I often think that my daughter would do better at some kind of place like where Peter is, but there isn’t anything that I know of around here, and I don’t know that I could be so brave like you have been, to send her there, so upsetting for everyone. Good luck.

    Comment by Margaret — June 4, 2012 @ 9:08 pm | Reply

  2. WOWWOWOWOWOWOWOWOW!!!!!
    It’s never the wrong time to do the right thing and it looks like all the right things are and have been done. I can only imagine the bitter sweet feelings you describe but WOW…40% better! It will be 2 years this August that we all sat in that room in front of the arbitrator…what a massive leap in the right direction.
    So proud of all of you and so so so happy to know the fight was worth the rewards that are blooming

    Comment by Maggie — June 4, 2012 @ 9:48 pm | Reply

  3. So much to be thankful for! Sadly many without the challenges you face cannot provide enough control and guarantees in day to day existence within a family. There are so many dynamics I see it in my own home. We can’t control or hope to control every situation that comes up. You have tremendous courage and have gone above and beyond to love and provide for Peter’s needs. Life here is far from perfect it is freeing to pray the Serenity prayer and accept that everyone has limitations we can only do our best and hope and pray…

    Comment by Victoria Steiner Campbell — June 5, 2012 @ 8:52 am | Reply

  4. What wonderful news.

    Comment by Nancy Crenshaw — June 6, 2012 @ 2:55 pm | Reply

  5. I’m so happy to hear about his progress! How is Sophie?

    Comment by MM — June 6, 2012 @ 10:45 pm | Reply

  6. Just found out my 12 year old niece has a thickening of her heart wall and a valve issue. This combined with her legally blind status, and other damage from a birth trauma will send her into adulthood handicapped beyond reason. Of course we can reason all kinds of ways. We can pray and cry. But it is the walking hand and hand, the daily life, that hurts everyone. It is so nice to hear a success story and I wish you all and Peter the best on your journeys.

    Comment by skyelav — June 9, 2012 @ 4:04 pm | Reply

    • Please know that my heart goes out to you and your family as you learn to process this difficult news. Try to keep in mind that the walking hand in hand part, though terribly painful at times, is almost always accompanied by moments of joy that transcend the ordinary. Kids so often do better than predicted by health care professionals and all any of us can do is love them, hope (and live) for the best but quietly brace for the worst. Take care, Mary

      Comment by whenrainhurts — June 10, 2012 @ 9:25 am | Reply


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