When Rain Hurts by Mary Evelyn Greene

March 25, 2010

May 2009

March 25, 2010.  I wish there was a corner of the world, reserved just for our family, where we could hide and heal.  Parenting a child like Peter is a lonely, lonely journey.  But being Peter, I’m afraid, is an even lonelier journey, and so that’s what I must keep reminding myself.  None of this is his fault and he deserves our best, even when we feel like disappearing altogether.  Yesterday at his psychiatry appointment he told the doctor that he sees the Grinch crawling across the ceiling whenever he’s left alone.  “I don’t like it,” he says.  “He scares me.”  In response to her questions, he admits that he’s always seen “Mr. Grinch” and that he can make him go away by walking into another room or finding another person.  He told Pat and I this news a few weeks ago when he suddenly divulged some of his most secreted fears snug between us after a nightmare.  We assured him that it wasn’t real, that it was just his imagination and his fears getting the better of him, but of course we were terrified of the implications.  Words like hallucination, delusion, and psychosis came bubbling to the surface of my consciousness with shuddering bursts.  His psychiatrist, after speaking directly to her, is hopeful that he’s not actually hallucinating.  She’s hoping that he merely panics when left alone and this fear, when mingled with his disorganized thought processes, manifests itself as the Grinch.  Pat and I left feeling relieved.  We dropped the kids off at Grandma’s and next met with two key players on Peter’s team at the district office.  The stated purpose of the meeting, which they requested, was to “rebuild trust” after the chief suspect (the school psychologist) called CPS in blatant retaliation for our demanding that she be removed as Peter’s counselor.  But they chose a risky, certainly partisan, opener for two peacemakers attempting to repair a relationship that’s broken in all likelihood beyond salvage.  And here’s how it went: we walked in the room, grim-faced and gray, sat down, and watched as one of the them leaned forward with hands clasped and addressed us in a manner reminiscent of a funeral director, “we’re so sorry for the anguish these situations [CPS investigations] always cause the families involved.”  A very pregnant pause followed and I felt my face redden.  The craziest part is that I’m unclear whether they understood why we walked out and left a few minutes later.  Their opening remarks lumped us unceremoniously with the world of child abusers, who must bear public humiliation and agony, and they don’t see why we took offense?  And believe me when I say the rest of what spewed from their mouths was equally upsetting.  The truth is, they might have succeeded in causing us to wave the white flag once and for all regarding Peter’s programming if their approach to his school day wasn’t directly and negatively impacting our family’s home life and his ability to improve.  As Dr. Federici just reminded me, public schools simply don’t understand these kids’ need for serious, 24/7, no holes in the armor structure.  Consequently, they sympathize with the child and blame the parents.  I really have no idea where we go from here.  How do we continue to advocate for Peter, shield Sophie, and reclaim something of ourselves, our marriage, and our family in the midst of continual and deliberate onslaught?  I don’t much know but it never hurts to practice forgiveness, and perhaps that’s where we should start.  Perhaps I need to forgive our own mistakes and missteps, as there have been plenty, and at least strive to forgive the double whammy of others’ ignorance and arrogance that at times has escalated into blunt derision.  I’m meant to be Peter’s mother because I am Peter’s mother.  His destiny is my destiny and there’s no changing that.  But if I can alter, even a little, the course he takes, so that his is a more hopeful future, then I’ll have done my job.  At that point, I hope, my heart might finally heal.

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  1. Hello Mary;
    I am reading your story with great interest, sorry for all the problems you are going through with Peter. I am on faslink too, so can relate somewhat to the issues you are having with Peter.

    Comment by Margaret Lintott — March 25, 2010 @ 2:47 pm | Reply

  2. So difficult to want so much to help your child but learning what they need and having to involve and depend on others makes it so difficult. I can feel from reading your entries how much you desperately want to help your son. Being a parent from what I have experienced with a son who has a mental health diagnosis has been a tough road. Wanting to do the right things, wanting to find the answers and feeling often very powerless and inept. Definitely being a parent does not do a lot for my self esteem on many days. Try to remember that you are doing your very best and that is all that anyone can do. Those we come into contact with in schools, doctor’s offices, grocery stores and elsewhere do not have a clue what life is like and what a rollercoaster it is to parent a child with challenges. Be gentle with yourselves and love each other. Think of all you have been and are trying to accomplish. Yes, your other child will feel the stress as well but she can grow from this just as you will and the result will be a more compassionate and feeling person. Hoping for some brighter days for Peter and your family.

    Comment by Miss Victoria — March 25, 2010 @ 2:53 pm | Reply

    • What a beautiful message. Thank you so much, Victoria. I wish you all the best too. Mary

      Comment by whenrainhurts — March 27, 2010 @ 9:41 am | Reply

  3. I think it would be reasonable for you to request that the school bring in an expert on RAD/FASD to do an in-service with the staff. It is imperative that the speaker be very knowledgeable about RAD in particular. If they are willing to do this and are committed to doing what is necessary to meet the needs of your son and your family I think that you may be able to salvage this school placement. If they are not then you will have to find another school. I recently attended a two day training with Nathan Ory and I found him to be one of the few psychologists who is able to differentiate btw which behaviors are part of the FASD, and which behaviors are due to a behavioral disorder or mental illness. Most of the “experts” I have seen over the years are stuck on the FASD characteristics and can’t get beyond the “can’t vs won’t” paradigm and only refer to mental illness or behavioral disorders as secondary characteristics. This would not be helpful in your situation at all since what you are dealing with is RAD and BPD and quite possibly Borderline Personality Disorder as well. I think that if you asked Nathan Ory to come and train the staff specifically in relation to these aspects of Peter’s diagnosis it would be far more useful than just having someone come in to do some training re:FASD.

    Comment by Errin Weigel — March 25, 2010 @ 3:06 pm | Reply

  4. If knowing positive thoughts are coming your way – then here they come!

    Comment by Amy FitzGerald — March 25, 2010 @ 5:20 pm | Reply

  5. I am in agreement with Errin. If the school will take the time for inservices on things like PKU (which Ellie has) and diabetes, etc… they should take the time for an in depth inservice on any and all conditions pertaining to Peter’s disabilities… my heart goes out to you and next time I see you I’m likely to give you a big hug… so be prepared! Peter is blessed to have you both in his life.

    Comment by Jen Munn — March 25, 2010 @ 9:39 pm | Reply

  6. I’m impressed with your courage. How awful to be doing the very best to address your son’s immense and complicated needs and have to endure the shame of being falsely accused of hurting the very one you are helping! Reminds me of the stories about parents who get reported to CPS because their child has a blood disorder causing bruising or a child with mongolian spots who a pediatrician thinks has been abused. It seems negligent to me that the school would not ask for a specialist on FAS/RAD and I certainly support you asking for one. Unless the school is able to understand the types of interventions that are necessary for children with these issues I don’t see how trust can be rebuilt and would certainly understand you choosing a different school. Is he eligible for a special placement and school funding due to his dx? My heart goes out to you.

    Comment by Nancy — March 25, 2010 @ 10:24 pm | Reply

  7. I am so sorry to hear of this nonsense. Not like you already had your hands full. I would be furious , and not so sure how quickly I could find the peace and forgiveness. This might be an action worthy of discussion with the state licensing board for psychology – that is if she is indeed licensed. To create a state of chaos in a child already diagnosed to have attachment, FAS, etc by a more qualified medical personnel is destructive to the child.
    We had an issue in first grade – though not as severe – it still shattered my faith that the public school would ever get it right my daughter. We quickly found our way to a wonderful private school who put family first, and she is thriving as is our family. Don’t rule it out for Sophie – at least. Peter’s needs may be to great for the basic public school, but maybe you can still shelter Sophie from this nonsense.
    I hope this comes to a quick end.

    Comment by Janet — March 26, 2010 @ 12:40 pm | Reply

    • Thanks Janet. What a mess. We have lots of options to consider in terms of officially addressing this gross misappropriation of authority – but right now we have to figure out what’s best for Peter. Obviously a private school makes sense – but there isn’t one that I’m aware of that would be a good fit because Peter would have to be in a private special education school – and although there’s one good one w/a day program , I don’t think they take kids on the spectrum or who have significant mental health diagnoses (I think they just treat dyslexic and other learning disabled kids). So our options are quite limited.

      Comment by whenrainhurts — March 27, 2010 @ 9:53 am | Reply

  8. Our school SPED directly sent a nasty email about me and my parenting around..only in her technological error, it also came to me. Oh yes, we have done the “meeting to mend trust” routine..many times..and the white flagged forgiveness, too many times.
    The bottom line is that ignorance is power and knowledge often brings us to the sad realization that ignorance is power.
    Again, I pulled my children out, which just fueled their allegations.
    I am still fighting the good fight, the difference now is that I never expect to win, only maintain dignity and protection for my children (who are back in the same repugnant system).

    Comment by ellen — March 26, 2010 @ 9:17 pm | Reply

  9. I cannot tell you how brave and wonderful I think you and your husband are to take on such a huge challenge and deport yourselves with such patience and understanding. Unfortnately, it appears our society has become so “nanny state” oriented and ideologically demented that hidden common sense and understanding by officials about something they obviously know nothing about can cause so much real harm to you and your family. In this case it is obvious the “educators and specialists” in your son’s school are the ones who need educating. We are all being trained everyday that everyone in this country should be put into a nice neat “box”, i.e., you are either a left wing kook or religious right wing nut, commie-pinko, etc. (Just like they are being TAUGHT in college) Real logic, common sense and reason seem to be tossed aside. Divisive… It’s us against them. There is no time to stop and wonder if there might really be another meaningful side of the story to be examined and taken into account. My best wishes to you and your family as you continue to not only fight the demons of your children, but those imposed on you by those who should be HELPING you instead of punishing you for your efforts!!!!

    Comment by Bill Culbreth — March 28, 2010 @ 2:04 pm | Reply

  10. Taught in college…hmmm…well, since I teach business management, I wouldn’t know what special education teachers are taught, except for the few in my doctorate program in Higher Education. If these special ed. teachers are being taught to put people in boxes, then the students are adults- they have to ability to ‘think’ and decide whether or not their Professor is teaching them correctly, and go to the administration of the college and report said Professor. It does no child any service whatsoever to be labeled, to fit in some box. Okay, enough of my soapbox. I’m just so frustrated with the public schools systems, and others who claim expertise of special needs kids, and then actually cause additional harm to the child. It’s just so sad. I’m hoping for the best though, as the needs of these special kids are acknowledged in a support of growth and compassion in the future.

    Comment by Lori — March 31, 2010 @ 10:07 pm | Reply

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