When Rain Hurts by Mary Evelyn Greene

June 21, 2010

June 21, 2010 Journal Entry


Peter, Giada & Sophie in the Bounce House (Father's Day, 2010)

June 21, 2010.  Despite a rough morning, Peter rallied beautifully and we were able to celebrate a wonderful Father’s Day with Pat.  His beloved granddaughter, and his oldest daughter Jennifer and her husband, drove from New Jersey for the afternoon.  At 19 months, the baby is a dizzying blur of delight.  It was a hot, happy day, filled with fresh berries, burgers, hot dogs, and corn on the cob.  The waters of the gulf between Pat’s old and new lives were calmer and somehow less vast than they sometimes seem.  I think everyone felt it, Sophie and Peter included.  I was so grateful that Pat wasn’t made to sit on the fence between alliances.  We are one family and we all belong to him, and him to us.  Baby Gia, at the age where everything is new and worthy of exploration, found tremendous joy in whacking the dogs’ water bowls with a wooden spoon.  Later, after they left, we watched The Indian in the Cupboard with the kids and Grandma.  Peter snuggled with me on our big green velvety chair and I drank in the smell of his freshly shampooed hair in the sublime stillness of the moment.  These intimate occasions, though still not common, and definitely not a given, are occurring more and more often, and with less and less awkwardness.  Pure bliss is what they are.  With 4 days left of school and no real lessons on the horizon, we let the kids stay up later than usual.  The movie, like the book, captured their imaginations and I listened with great  joy to Sophie’s running comments directed at the characters on the screen.  This morning they are both like overcooked noodles, though, as we try to pry them from their beds toward a more vertical position.  Summer vacation comes late in the Hudson Valley and Sophie and Peter are past ready for the school year to officially end.  Peter’s 3rd grade swim party is today which I miss because I’m currently in 24/7 Due Process Hearing mode.   Dr. Federici is concerned that Peter is experiencing “break through seizures” and has urged us to get another 24-hour EEG and MRI.  None of those have been scheduled yet so now that the town pool is open, I have been keeping an extra vigilant eye when my son’s in the water.  Peter had an episode on Saturday that scared us both.  He seems to have lost swimming skills over the winter and struggled underwater to the point where he threw up in the pool.  I don’t know whether he had a seizure or just panicked but something definitely happened and his proficiency in the water has definitely diminished.  “I almost drownded, Mommy!” he cried.  “I do not know what happened but I couldn’t get up to the top of the air.”  Worried, of course, about today’s swim party, I write to his teacher, who I just have spent two days cross-examining at the hearing, and ask that he stay out of the deep end, explaining in an abbreviated way my reasons.  When I pick Peter up this afternoon, exhausted but happy as he sucks on a ring pop that turned his teeth green, he informs me that he “passed” the swim test and was allowed to swim in the deep end.  I was terribly angry, of course, with all kinds of colorful expletives racing through my head as I smiled to the other parents as we left, but I also was relieved he was okay.  Why certain persons at this school feel entitled to supplant their judgment for ours, I will never understand.  If I had relayed this kind of information to Sophie’s teacher, for instance, she would have been on it like a hawk on road kill.  I have no doubt whatsoever.  But there’s something about Peter, or me, or the bizarro world of special education, that invites constant criticism, constant second-guessing, and endless usurpation of parental prerogative and wisdom.  The unforgiveable part is that Peter really could have been harmed, even killed, if something had gone wrong.  In three more days though, Peter will be saying goodbye to Mill Road Elementary for good.  He is not returning.  The stakes are too high.  He is done and so are we.  A new chapter in his education, and hopefully his future, is around the bend.  Don’t get me wrong: I was thrilled to see his goofy green-toothed grin today.  He had a great time, and for that I’m grateful.  But also make no mistake: I’ll be much more grateful come Thursday at 11:45, when school’s dismissed for summer.  Its just one more important step toward divorcing ourselves from the turmoil of Peter’s integrated education that constantly distracts us from the business that matters: our family.  Happy Father’s Day, Papa!

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5 Comments »

  1. So glad to hear of the Happy Father’s Day!

    Best of luck with everything else that’s coming up now.

    Comment by Kathleen — June 21, 2010 @ 10:42 pm | Reply

  2. Glad to hear of your wonderful Father’s Day.

    I remember that bliss feeling when my kiddo first started to trust also, and snuggle in and fall asleep more often than not…lol It does become more frequent, and now I have a little one who can never get enough hugs, and hear me tell her I love her often. They never can get enough love, and yes all of this their needs, can be tiring, but it is such a joy to see them grow and thrive. :)

    I’m glad to hear about the school decision. I am also working on paperwork for transfer for my kiddo. Keep your fingers crossed. I applied for this transfer last year also but it’s a high growth area of the city, and all vacancies were filled last year. We also need a break from the mindset of the folks who just don’t want to understand my kiddo, and she is closer to Sophie in her attributes, than possibly Peter.

    The pool incident really had me holding my breath as I was reading. I am so glad Peter is alright. I understand how you would be none too pleased with that situation. I am hoping they will be more aware the next time he is in the pool.

    I think I am now understanding the cognitive situation for Peter. Seizures. More. My thoughts are with all of you. I’m sure you will find the source. I do believe that there is absolutely no way the public school Peter was in could even remotely handle the future for Peter, if the seizure situation might be instrumental. You are correct to protect him from the public school’s incompetence. It could be a very serious situation for his continuing health. Let us know what you find out okay?

    Thanks again Mary for your continued sharing of your information. I am learning so very much, and it is helping with my kiddo too.

    Take care.

    Comment by Lori — June 21, 2010 @ 11:46 pm | Reply

  3. Mary because what I do now is teach swimming I’m adding some thoughts here. First as I’m sure you know a seizure in the water is extremely dangerous and deep or shallow water does not make a difference as you are talking about a momentarily loss of consciousness with the potential of water flowing into the airways. I would for his safety insist he wear a lifejacket until the testing results are in. Second it is not uncommon for a child who has been out of the pool over the winter to be rusty when they get back in. It is like anything else snow skiing, riding a bike, etc. you are rusty when you get back to it. His body is growing and is going to feel different from the last time to this time. I would find a qualified instructor to work with Peter privately as learning to swim is not a one time occurrence and there should be continued instructor pursued to help your child continue to develop his skills. In my experience swimming is a great equalizer and very freeing for many children despite other limitations they might have. I wish I could work with Peter but I’m thinking geography would preclude that :)

    As far as that teacher to say that she works with kids who may have issues like Peter’s she is extremely negligent if she ignored your cautions regarding his swimming ability. I hope the light dawns and Peter gets what he needs because clearly this system sucks.

    Comment by Victoria Campbell — June 22, 2010 @ 8:32 am | Reply

  4. Hi Mary-
    First many congratulations to you on getting representation for your upcoming book. That’s exciting news for you in the midst of the turmoil you are going through. Given the stress of the hearings, I’m sure this great news put a smile on your face. I’m sorry to hear of Peter’s seizures though. That’s very scary and thank God nothing happened at the pool.
    Shirl

    Comment by Shirl DiGugno — June 22, 2010 @ 5:48 pm | Reply

  5. It is such a pleasure to see your handsome son, and looking healthy and happy. Such a long haul. You and the rest of the family have shown great courage and, above all, love. I believe that you have developed more humility than you’ve even thought about. After all, if one thinks of one’s humility, it vanishes. All good wishes coming your way.

    Thistle Brown

    http://www.thistlebrown.com/

    Comment by Thistle Brown — April 6, 2012 @ 10:17 am | Reply


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