When Rain Hurts by Mary Evelyn Greene

November 10, 2010

November 10, 2010


Hayride at Hahn's Farm (Oct. 31, 2010, Salt Point, NY)

November 10, 2010.  Pat and I are at as a loss again.  Peter’s behavior for the last few days has been the worst its been in a year, at least.  From hurling things at us in the middle of a Parcheesi game, to calling me a pig, to throwing his Halloween candy in the garbage during a rage, our son is slipping again.  After soccer Saturday, where Peter played better than he has all season, we embarked on a family project, which was to plant a Weeping Cherry tree and create a little memorial around it for our dog Scout, who died last Friday.  We were going to wait until spring, but one of Pat’s clients surprised us – and in doing so lifted our spirits immensely, by sending a tree in the mail!   I wasn’t even aware that such a thing was possible.  She’s a dog lover too, and was particularly touched when she learned that I had gotten Scout right after my father died, as she apparently did the same.  Her thoughtfulness and generosity is allowing us properly to say goodbye to Scout now, instead of next spring, while her spirit is still strong and our grief great.  The project was going well except that Peter wouldn’t, or couldn’t, help.  He’s drifted back into himself of late, relying on old, ingrained habits to occupy his mind and push those close to him away.  Constant nonsense talk, noncompliance, body flailing, behavior generally more fitting of a grumpy baby than a 9-year old boy.  While Sophie, Pat and I were working on the tree, Peter was supposed to be sweeping the garage.  But he wouldn’t do it.  He was making a bigger mess, on purpose.  So we sent him to his room to regroup.  Guess what he did?  He took his diaper off and urinated directly onto his bed.  We discovered the damp, musky presentation several hours later.  He hasn’t done that in over a year.  And I can’t figure out what’s causing him to revert to these maladaptive behaviors.  He loves his new school, and we thought he was finally settling into the new routine.  His state of continence is improving, his work is better, and he’s made a new friend.  I don’t get it.  Maybe it has something to do with Scout’s death, but Pat and I don’t think so, and neither does Lindy.  He didn’t like Scout, shows no interest in dogs, in fact, and really doesn’t grasp the concept or the implications of death.  I guess its possible this is what’s causing his angst – his lack of understanding and ability to get his mind around what happened.  I think I’ll have a talk with him today, if I can steal a quiet moment, and see if it helps.  I have to do something.  Yesterday he spit on me again for the second time in five days and when I asked him to use the bathroom, he grabbed his crotch with both hands and thrust his pelvis toward me, screaming “no!”.  The ghetto display surprised even Lindy, who watched stoically as I did my best to corral the escalating situation.  Where he learned that delightful little trick I have no idea.  Sophie had her first swim meet of the season on Sunday, and though Peter is also on the team, he sat this one out.  He’s not ready for a meet yet, but that’s okay.  We had Sophie sit out her first meet, too.  He’s trying hard and doing a great job of staying on task, at least in the pool, and we don’t want unnecessarily to discourage his efforts or embarrass him.  Sophie also continues to improve, and at times really excel, in the water.  I wish she could handle the ever-increasing demands of school as well as she handles herself in the pool.   If only school could take place in a semi-submerged setting, she’d cope with her academic responsibilities, no doubt, with grace and confidence.   Thank goodness she has a top-notch teacher who’s blessed with an even temperament, a good heart, and an “I don’t let anything faze me” approach to third grade.   She really is the perfect match for our “I’ll give you a run for your money” dynamo of daughter.  Funny how our one positive experience during Peter’s stint with Mill Road Elementary School was the semester he spent in the first grade inclusion classroom.  At the time, Sophie’s current teacher was the regular education 1st grade inclusion teacher and another capable educator, a woman who had previous experience teaching FAS kids in a residential school, taught the special education kids.  Unfortunately, the folks who make the decision weren’t keen on listening to the thoughts or advice of the only person in the school who had real experience working with our son’s constellation of disabilities.  But no matter, I’m working hard, and so is Pat, at putting those three and a half years behind us.  We still don’t know whether the district is going to appeal the Due Process Hearing decision, but I hope and pray they will decide to leave us alone.  The experience has left me feeling somewhat like a Soviet dissident, as other parents now covertly approach me with their own dismaying, hurriedly whispered, special education stories, some of which sprung to life after our hearing decision.  I had hoped the ruling might stir something within the district’s collective conscience and move them to reexamine their mindsets and practices, but that may have been wishful thinking on my part.  If what I’m hearing from other parents is true, nothing has changed, at least not yet.  But what has changed is our bargaining position and our place at the table, meaning we now have a bona fide say in what happens to our son and his future.  I am so grateful for that.  Despite our recent setbacks, it’s nothing short of hope restored.

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5 Comments »

  1. Hi, I subscribe to your blog and have been following you for a while now. I commented a while back and told you that we adopted a 1 1/2 year old boy from Russia in 2006 and that he was just diagnosed with Pervasive development disorder and indicated to be on the autim spectrum. Well, after so many encounters with our pediatrician that we felt were way too casual and not pro-active. (Although I wonder why it took us this long…) we switched. The new MD is wonderful but from the minute she walked into the room and saw our son, she suspected FAS. He is FTT Failure to Thrive and she has taken blood, urine, ordered a bone age test and a sweat test for cystic fibrosis as well as given referrals to Neuro and Endo for suspected FAS and short stature. Our sweet little guy doesn’t make the height chart not the weight charts, at all. May need growth hormones. He is a very fussy eater. He is going to need lots of work on his fine and gross motor skills. He is extremely smart but can barely draw a line. We have had some similar tests in the past but no one has mentioned FAS until this week. I guess I figured if no medical person said it that it wasn’t there….. maybe wishful thinking. I am trying to be focused and calm but every now and then my mind wants to get so mad at the woman that acted the way she did while carrying him. I know I can’t resent that. She did what she did and we are blessed to have him but I think you can relate, somehow, to the pain that I am feeling that he doesn’t have the fair chance that he should. Well, I’ll just see what unfolds after all the appointments and tests. I will keep you and your family in my prayers.
    rebecca in FL

    Comment by Rebecca — November 10, 2010 @ 2:11 pm | Reply

  2. Hello Mary,

    Two steps forward, one step back.

    I may be way off here, and I know very little about FAS, but I like to think I know something about kids. It occurs to me that Peter has to see whether his new class, new learning, and what is slowly becoming a new self are permanent and, not so incidentally, loveable. It seems that Peter before entering this new school year got it that you love him regardless of his behavior. Now with his new, more functional behavior, he needs to know whether you still love him when he behaves in this new way. Of course you do, but he doesn’t know that. The old behavior is safe for him to know you love him – and, as I write it I realize, safe for him to recognize his sense of self. He’s changing. Two steps forward and one step back – both for him to feel increasingly secure as a self and for him to feel secure in the family.

    Take what you like of what I have written here and leave the rest.

    Chris

    Comment by Christopher Duncan — November 10, 2010 @ 3:41 pm | Reply

  3. What you’re hearing from us is true… I’m with Chris and his theory about what’s going on with Peter. Onwards!!

    Comment by jill — November 10, 2010 @ 10:50 pm | Reply

  4. Dont know if this could be the problem, but even if he didnt care for the dog, maybe it was just the change in the home dynamic. before there was always a pet on the scene, now since he is gone, it might affect him just because it is a change in the home. he might also be feeding off of all of your change in mood due to grief. i know just having a visitor stay the night here can change my son’s mood. I would assume it would be the same if you lost a family member (one less in the home). Hope he recovers quickly. hugs

    Comment by Melissa — November 11, 2010 @ 7:12 am | Reply

  5. Another RAD parent is organizing a get-together for RAD parents in Orlando that you may enjoy.

    http://www.watchingthewaters.com/2010_11_01_archive.html

    Comment by MM — November 16, 2010 @ 5:32 pm | Reply


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