Poor, pitiful me syndrome with-public opinions

Discussion in 'General Parenting' started by AllStressedOut, Aug 31, 2007.

  1. AllStressedOut

    AllStressedOut New Member

    Two of my difficult children met the new therapist in the new psychiatrists office yesterday. Youngest difficult child was in trouble for the food incident, disrespect his teacher listed on his chart and behavior that day, but I wanted him in his normal mindset, so I let him play around. Therapist noticed (as did neuropsychologist a few weeks ago) that youngest difficult child manipulates people into thinking certain ways. Like when he was younger he'd say "My tummy hurts, I need a drink." But if you offered him water, he wouldn't take it, he always wanted milk, diet coke or juice, whatever sounded best. *rolling eyes* We caught onto this when he was little and when he'd do it, the answer would always be no. If he asked politely for a drink, the answer would always be yes. Well, he's moved on from that tactic to "Boy, I sure do like cheese." when making him taco salad, rather than asking "Can I have some cheese on my taco salad?" so now we do the same thing. If he is trying to hint at it, we say no, if manipulating, we say no. If he asks correctly, we say yes.

    Okay, all this being said, my mother has now decided he has that he may have Prader-Willi syndrome. For those of you who don't know what this is, its the syndrome that keeps your body from feeling full (in a nutshell). My youngest difficult child sneaks food constantly at school and at home. I do not believe he has this because it also shows a low IQ, obesity from infant stage on, and so forth. Youngest difficult child has never been obese, even when husband was single living with his parents and difficult child has free reign of the house and kitchen. His IQ was tested by the neuropsychologist and it was like 110. My mother is insistant I ask this of psychiatrist and I tell her, "Mom, if I continue to come up with syndromes that my son may have, the psychiatrist is going to think I'm nuts. He is going to get frustrated and feel like I'm trying to diagnose my son with all these things so I have a label for him." She just doesn't get it. He was in trouble yesterday when she stopped by, so he put on a sad face. He knows she hates that and feels bad for him and then she'll coddle him. Drives me batty! I try to explain he was playing around before she showed up, but she doesn't get it. I just told her a minute ago she needs to catch a clue. I think I worded it "This is said with the utmost love and respect, but you really need to clue into what he is doing to you." Then I went on to explain what the neuropysch and therapist said, even though I've already told her this.
     
  2. AllStressedOut

    AllStressedOut New Member

    I didn't finish this post because I got a call from the school. Youngest difficult child snuck some food. When the teacher caught him, he refused to spit it out. Then he threw a huge fit for her viewing pleasure and the nurse. I went to the school to give him benadryl, take him home to eat plain food so he doesn't react further etc. He was still throwing the crying fit in her office. So I told him, "No, stop that, the nurse doesn't know you well enough and she doesn't realize your faking it." Well, he stopped, no tears, sniffling or anything. But now I'm worried, ONCE AGAIN, that the school is going to call CPS on me. They probably think I'm this evil mom and I'm a terrible person, because they don't know me well enough to know I'm just black and white. That my difficult children do better this way. That youngest difficult child manipulates people to get what he wants and part of that is fit throwing. I wrote another novel an email, this time to the teacher and the nurse. I already sent it, but as I was trying to read it to my friend, I was crying through the whole thing. Its always youngest difficult child who makes me feel like everyone is going to think I'm abusing him. I'm just so sick of this roller coaster.
     
  3. Steely

    Steely Active Member

    Just a couple of things come to mind, and maybe some more will later when I can think longer.

    One is........food hoarding if often a sign of Reactive Attachment Disorder (RAD), or attachment type issues, which he could have from his bio mom. Perhaps telling your mom to go research that would be a nice way to stop her from obsessing on this other syndrome. (Which I agree sounds pretty unlikely.)

    The other things is, that to me, the fact that difficult child stopped immediately when you said to him knock it off, proves your exact point to the nurse and teacher. You have difficult children number, he knows it, and now the teacher and nurse know his number. To me, it was a bravo moment! Win - Win. I do not see in any way how this would be portraying you as a "bad" mom, not to mention them calling CPS. You did good girl!

    As far as being fed up with the lil guy. Yep! I would be too! Just keep going forward, doing what you know is right - and fight the good fight.
    :warrior:
     
  4. Steely

    Steely Active Member

    The other thing I thought of was ~ what if ~ you went to your local fire dept and had a chat with a paramedic or fireman who would be willing to come to visit your difficult child at school to talk to him about his food allergy. It seems logical, that if your difficult child continues to eat things he should not, at some point, somebody is going to call the paramedics when he is having an allergic reaction. Perhaps a local authority could scare some sense into him, by telling him what will happen if he keeps eating things he shouldn't. It would be especially effective if the teacher was able to call the paramedic after difficult child has tried to eat something, and is throwing a fit, like today.

    Just a thought...not sure it is feasible......but perhaps worth a try.
     
  5. TerryJ2

    TerryJ2 Well-Known Member

    Therapist noticed (as did neuropsychologist a few weeks ago) that youngest difficult child manipulates people into thinking certain ways. Like when he was younger he'd say "My tummy hurts, I need a drink." But if you offered him water, he wouldn't take it, he always wanted milk, diet coke or juice

    Whoah! Does THAT sound familiar!!!

    *rolling eyes*
    Ohhhh, yeah ...

    We caught onto this when he was little and when he'd do it, the answer would always be no.
    Good. We're still working on this. It's not just with-food, either.

    If he asked politely for a drink, the answer would always be yes. Well, he's moved on from that tactic to "Boy, I sure do like cheese." when making him taco salad, rather than asking "Can I have some cheese on my taco salad?" so now we do the same thing. If he is trying to hint at it, we say no, if manipulating, we say no. If he asks correctly, we say yes.

    This is exactly the way my mother behaved with-us, but not with-food, with-life in general, and manipulating our emotions. Aiyaiyai!

    You gave a very good description of it.
     
  6. AllStressedOut

    AllStressedOut New Member

    I like the idea of asking a paramedic to speak with him and his class. I'll ask the teacher once she realizes I'm not a total nut job.

    I haven't heard back from the nurse or teacher from the email I sent. Granted, it really is a novel. husband saw it two different ways. He said #1, this email may seem like a guilty concience to some people and #2, it really does share what we've been through and what we do to help difficult child now

    So, I want honest opinions, again, I'm obsessing! So if you don't want to read it or just simply can't make it through the novel, FEEL FREE to IGNORE me! My feelings won't be hurt.

    Here it is:

    "Let me start off by saying that I really am not a mean mom, because as you read this email or hear how I spoke to difficult child today, you may think so. When difficult child visited the neuropsychologist (I think I told you this already) the doctor mentioned how difficult child whines to get what he wants, or to not do something he doesn't want to do. He asked if difficult child manipulates us at home. When difficult child was younger he use to say "My tummy hurts, I need a drink." If you offered water, this wouldn't do, he would want Daddy's diet coke, milk or juice, but water wouldn't fix it. After awhile we realized his tummy didn't hurt, he was just using this to get what he wanted. So what we did was, if he used this tactic, the answer was no, but if he asked nicely for what he wanted, the answer was yes. As he's gotten older, he's changed how he does it, but now its "Boy, I sure do like (insert food here)." rather than just asking "Can I have (insert food here)?" So now we do the same with this as well, we say no when he doesn't ask for it and yes when he asks nicely.

    This being said, difficult child also cries when he really is not upset. He's crying to make you feel bad for him. He also cries when he truly is upset, but you have to learn by spending time with him, what the difference is. So right now its going to be difficult, because you don't know him well yet.

    Here is the part I sound like such a mean mom in. When I walked into the office today he was fake crying, so I sternly told him "No, stop that, I know better. The nurse doesn't know you well enough yet, and she doesn't realize your faking it." Well, he stopped, no tears, no sniffles, nothing. When I asked him questions he answered them in a whiney voice. He will use these tactics on anyone who doesn't know him well or who believes he's genuinely upset. Once you get to know him better you will figure out when it is real and when it's not.

    I am not sure if you are permitted to do this as a teacher, but as you learn and you know better, I would actually prefer you to stop it very plainly and sternly like I do. It calms the situation down so much faster and you can talk to him and figure out the true problem easier.

    I'm going to say this next part, because this is always my fear and I'm trying to be sure you all know the full picture. A parent called CPS on us last year because of difficult child's doctor ordered diet. They felt we were doing this to be mean. We truly aren't. We really want to figure out all that we can do to help difficult child have the best day and life possible. difficult child has many difficulties that we want to help him overcome. CPS investigated us and spoke to his doctor that ordered the diet. They did not find anything wrong with us or how we parent or discipline. We do not hurt our kids. We love them and we sincerely want them to do their best. difficult child will continue to see the new psychiatrist every month and if you ever have concerns, I'd like to fill out the form to have you speak with this doctor. If you ever think we're neglecting or abusing our children, please start here first and then go to CPS if you think you need to. I worry about this all the time because this was the most heartbreaking time in our lives. We love our kids, we do our best and we certainly aren't perfect, but we aren't neglectful or abusive ever.

    I'm sorry, this turned into a novel again. I really hope you and the nurse don't think I'm awful. I love difficult child very much. Over the years I have just figured out what works best in dealing with the tactics he uses on us and others and how to handle the situation as quickly and calmly as possible. I let him know this behavior isn't acceptable and that it won't be tolerated, but I do it very matter of fact, because black and white works best with him.

    On a separate note, when he gave me his lunch bag, it only had a sandwich in it. No drink, pickles, apples, or afternoon snack. He said he ate them all this morning during morning snack and left his drink with his backpack. If he can be limited to one baggy of nuts during morning snack and one in the afternoon to keep him balanced during the day, then everything else left for lunch, I would really appreciate it. I want him to be eating a large breakfast, a good sized lunch and dinner and protein snacks between them to keep him as balanced as possible through out the day. It truly helps him to have the best day possible."

    Did you make it through? LOL
    :bravo:
     
  7. AllStressedOut

    AllStressedOut New Member

    Terry, ours isn't always with food either. Those are just the examples I was thinking of because of the food drama going on at school. He also will say "I like to color." Instead of asking his sister, "easy child, can I color with you?" She's 3 and the funny thing is, she picks up on his hint and she'll say "Well, then color with me difficult child." She even seems a little annoyed that he's hinting at stuff.
     
  8. Steely

    Steely Active Member

    I hate to say this.....but I think that your letter, although informative, sounds a bit like you feel guilty. As if you feel you did something wrong. It could potentially make them more suspicious and concerned about your parenting, rather, than not. I am just afraid these kinda letters in the future might backfire on you.

    But I will let others step in now and voice their thoughts, so you have a broader span of opinions. I don't want to hog your thread. :laugh:
     
  9. TerryJ2

    TerryJ2 Well-Known Member

    She's 3 and the funny thing is, she picks up on his hint and she'll say "Well, then color with me difficult child."

    Awww, what a sweetie! And perceptive!
     
  10. TerryJ2

    TerryJ2 Well-Known Member

    Well, he stopped, no tears, no sniffles, nothing.

    Wow, you really DO have his #!

    A parent called CPS on us last year because of difficult child's doctor ordered diet. They felt we were doing this to be mean.

    Phooey on them!!!! What busybodies. Just what you need. NOT!

    Good luck.
     
  11. AllStressedOut

    AllStressedOut New Member

    I worry that too WW, but I don't know what else to do to let them know what works best and not seem like a total jerk. The nurse did see it work today, but she also turned her chair away and faced her desk while I spoke with difficult child. This made me think she didn't agree with it. The reason I went to all the trouble of the email was basically to let her know that this is what works and this is why we do it. I still see your point and DHs that it could seem like I have a guilty concience. I don't, I just worry because of my past experiences.

    At psychiatrist today, I told therapist what happened and she said what BBK has said "You're gonna have to get over it." I know this, but before difficult children, I never had these problems. Now with difficult children, this is what I always seem to worry about.
     
  12. Steely

    Steely Active Member

    I know.......it is so hard. I was you with my difficult child in public school. I mean I fretted about everything that was not handled in my son's best interest, which was ALOT. However, the thing my intense focus eventually did, was focus too much attention on my kid. Pretty soon.........the entire staff was ruminating over him, and my dislike of the way issues were handled........and they decided he should just move to an Alternative school.

    I truly believe if I had been more calm, and let a few more things slide, the Alt school would not have been brought up. I ultimately pulled him out of school because I knew Alt school would have been the absolute worst for him......but I regret that I was not able to take more deep breaths, and let bygones be bygones. I think my kid's path, consequently, would have been different.

    So I only share out of my own personal downfalls, hoping that others can learn, even a little from them.
     
  13. AllStressedOut

    AllStressedOut New Member

    Do you think I should have let him throw his tantrum and just said "Okay, thanks for calling, watch for hives?" I just think that their year is going to get so much worse if they don't learn how to deal with him now. I also wish I could fast track them knowing me and what I'm really like.
     
  14. Hound dog

    Hound dog Nana's are Beautiful

    If allowed, Travis would eat until he exploded.

    We don't have an "official" explaination for this.

    My theory is that his failure to thrive as an infant, where he was literally starving to death, has had lasting subconcious effects.

    I wonder if this allergy thing has thrown difficult child into "I just gotta have it" mode. The fact that he can't have this stuff right now til you figure out what he's reacting to may be making him want it all the more, might in fact be making it irresistable because once you know what he's allergic to he might not be able to eat it again.

    Just tossing out ideas.

    Have they checked the flour ingredients in the things he eats?

    Hugs
     
  15. Big Bad Kitty

    Big Bad Kitty lolcat

    Stressed,

    I think you are worried (for good reason, since it has happened already) that somebody is going to call CPS on you. You should not be so worried because you are doing an excellent job.

    Your worry is coming through as insecurity. And I do not believe that you are insecure with raising those kids. But my feeling is that you may be coming across that way. For example, my reaction if my kid had been fake crying would have been "all right, Tink. Knock it off." It almost seems like what you said to him was way more for staff's benefit than for the child's. These staff members have seen crocodile tears before. If it took you to say "stop with the fake crying", that would have been all you had to say. You would not have had to explain yourself.

    Please stop second guessing yourself. These kids are so fortunate to have you.
     
  16. AllStressedOut

    AllStressedOut New Member

    Flour ingredients? What do you mean? Like wheat or white?

    difficult child has always snuck food, even as a baby/toddler. When he sneaks it, he sneaks as much as he can eat in the time period he thinks he has. Entire bags of hersheys kisses, family size box of nutter bars, bags of mini snickers, family size bags of starburst and so on. While he has always done this, I still don't think mom is right that it's this Prader-Willi Syndrome. The only think that fits is that he can't stop eating. He has only been on this special diet since the end of the summer in 2006, so a little more than a year. Before that he got sugar just as much as any other kid in the house, with the exception of his sneaking foods we didn't know about.

    Here is the info I found on this syndrome:

    Definition Return to top

    Prader-Willi syndrome is a congenital (present from birth) disease characterized by obesity, decreased muscle tone, decreased mental capacity, and hypogonadism.

    Causes, incidence, and risk factors Return to top

    Prader-Willi is caused by the deletion of a gene on chromosome 15. The majority of patients have a deletion of the father's DNA in this region. The remaining patients frequently have two copies of the mother's chromosome 15. The maternal copy of this gene is turned off in all people. When there is a deletion of the father's DNA (approximately 70% of patients), the disease occurs. This is because the patient is left with only the inactive, maternal copy.

    Signs of Prader-Willi may be seen at birth. New infants with the condition are often small and very floppy (hypotonic). Male infants may have undescended testicles. The growing child exhibits slow mental and delayed motor development, increasing obesity, and characteristically small hands and feet.

    Rapid weight gain may occur during the first few years because the patient develops uncontrollable hunger which leads to morbid obesity.

    Mental development is slow, and the IQ seldom exceeds 80. However, children with Prader-Willi generally are very happy, smile frequently, and are pleasant to be around.

    Affected children have an intense craving for food and will do almost anything to get it. This results in uncontrollable weight gain. Morbid obesity (the degree of obesity that seriously affects health) may lead to respiratory failure with hypoxia (low blood oxygen levels), cor pulmonale (right-sided heart failure), and death.

    Symptoms Return to top

    Floppy newborn infant (hypotonic)
    Small for gestational age
    Undescended testicles in the male infant
    Delayed motor development
    Slow mental development
    Very small hands and feet in comparison to body
    Rapid weight gain
    Insatiable appetite, food craving
    Almond-shaped eyes
    Narrow bifrontal skull
    Morbid obesity
    Skeletal (limb) abnormalities
    Stria
    Signs and tests Return to top

    Hypotonia
    Hypomentia
    Hypogonadism
    Obesity
     
  17. AllStressedOut

    AllStressedOut New Member

    Thanks BBK. I did start with that, but it was how stern I was that I'm afraid they all think I'm a jerk. They don't know me or difficult child, so they can only go off what they see. Honestly, if I saw a parent do this, I would have smiled, but only because I know how it is to be that parent. The email was definately for their benefit. The convo I had with difficult child about why he can't sneak stuff etc. while still in the nurses office was also for her benefit. Because of how she turned away when I told him to stop. I figured she expected more "fluff" and maybe I just need to be me. The real me would have walked in with the evil mommy eye and said "Knock it off." then I would have checked him out and taken him home and had a serious come to Jesus talk.
     
  18. Steely

    Steely Active Member

    No, I think you did totally the right thing with the tantrum and nurse. I just would have stopped with that. As BBK said, just believe in yourself. That shines through more than a thousand emails.

    I believe in my situation, that it truly was me demanding continuous ARDs, the emails, and the vmails of all that was not in compliance with his IEP, that ultimately, over years, ended in them throwing up their hands and suggesting Alt school. Some things, we just need to let go, and not try and get perfect.
     
  19. AllStressedOut

    AllStressedOut New Member

    Thats going to be hard for me! I want everything done to help my kids and I have always fought for it. The difference now is, I don't have my favorite principal, who also fought hard, behind me 100%. Last year I had the evil one and this year I don't know her yet. Right now she just thinks I'm a nut job.
     
  20. Marguerite

    Marguerite Active Member

    Stressed, you did all the right things. have faith in yourself. You've been badly burned by previous experiences, especially the previous school, and you need to let THIS school know that so they don't think you're incompetent, just insecure.

    because you are NOT incompetent. Just the opposite.

    I'm going from memory here, having scanned the posts:

    Your calling difficult child on his tantrum in the nurse's office was definitely win-win. Even if she wasn't looking, the nurse heard it. She also sounds very sharp (or it was just lucky) - she had turned her chair back to her desk so her back was partly to difficult child. This is a signal that she is letting, you, the mother, handle the situation (ie she could already see you knew what you were about). It was also a rejection of difficult child's attention-seeking behaviour, so it was her way of letting you (and difficult child) know that she has his number.

    I think this is darn good.

    Your email - too long. WW is right, you're sounding too desperate to justify yourself. You need a communication book instead of emails. It's more informal so it means you can say more without it seeming so significant; yet the viral information is there. You CAN say what you need to and still not sound terse - throw in a funny comment, an aside, to show you're still smiling, even if it's through gritted teeth at your frustrating son.

    I'm giving you a real example, names edited out and small explanations put in square brackets. This is from a few years ago, when difficult child 3 was in mainstream. He was 9 years old. This is an entire day's entry. I did not do entries on every day, only if there was new information or the need to keep the teacher fully informed as to his mood or level of fitness. Any crisis (behavioural) I notified them so they would know if he was more likely to be upset. At the time we were writing these entries difficult child 3 was suffering from such severe anxiety that he was vomiting and having low-grade fevers; his teacher insisted there was a physical problem needing investigation. As we had previously expected, she turned out to be a major factor in his anxiety because she's so strict, will not listen to parents and insists on doing things her way, even against professional advice. I still managed to stay polite and civil to her in the book, which made it easier to get her to take my requests on board. Only the book would have helped, that year.

    "Monday 2 February 2004
    Friday - we made the right decision [to keep him home from school]. He was unsettled and obsessive all day. We’d had to go out (various appointments which we combined with shopping) so having difficult child 3 with us meant we didn’t have to worry about getting back home in time. He was tired and anxious about being away from home, even though we were on familiar territory. Just before heading home we had to go in different directions. Because difficult child 3 was getting anxious again I sent him along with Grandma so she wouldn’t get lost. He immediately took her arm and didn’t let go as he guided her through the various departments. It made him feel in control to be able to help her find her way. This reduced his anxiety to levels we could tolerate. We still had a couple of small stops which we had to explain (repeatedly) to help him settle.
    He’s been very tired - mentally, mostly - since school returned. He’s commenting on how he feels better equipped to cope with teasing, although we’ve not observed much improvement (film night on Saturday - some younger kids were teasing him and he needed intervention, but he was maybe too tired to cope properly)."
    I'd put in comments like, "I know he will annoy you sometimes, feel free to dump on us through this book - crikey, if we don't understand, who would?"

    And if the teacher wrote, "I could have wrung his neck today and laughed through the whole process," we did NOT react with shock and horror, we merely said in the next entry, "Sorry you had such a bad day with him. We get those at home too. Here's hoping today is better." Or we might say, "Oops. Forgot to give him his medications. Although we're careful, this does happen sometimes. We've left spare medication with the school nurse - if you're ever unsure if he's had his medications, feel free to ring me and ask; If he's missed it, I will then authorise the school nurse over the phone to go ahead and dose him. Again, my apologies. Hope you had a stiff drink ready when you got home."

    This still keeps it short, but effective, light and friendly. Also, the more you do this regularly, the less need for long explanations. The teacher's time is limited, they do appreciate brevity. They also appreciate humour - something I used to do was save up the best jokes we got over the email, print them out and deliver them to the school - teachers eyes only (too rude for students). I might often include a note, "Here's something to reward you for the stress of teaching our son. Laughter is the best medicine - enjoy!"

    They also knew that at no time was my apparent informal approach signifying a lax attitude to his needs - if there was a problem with officialdom. I'd be on the phone sorting it out fast. I would write official letters when needed, especially on the subject of school detention often given to my son for being accused of bullying, when all he'd done was defend himself. I also objected to the school's discipline policy as being inappropriate, ineffective and damaging. They got a terse letter from me about that, hand-delivered with me almost in tears because although I don't like the way these people teach a lot of the time, a lot of them are still my friends in a small community.

    The other thing that helps is to be indispensible to the school in some other way, such as volunteering for something and doing a good job. Only do this if you can, but it shows them that you ARE a team player, which is what is needed when trying to deal with a difficult child.

    And my last point, on raising the topic of Prader-Willi with the doctor - simply say, "doctor, I need you to make a formal judgement on this because my mother WILL NOT let it go - I do not think my son has Prader-Willi, but my mother insists I ask you. Please can you give me what I need to make hr let go of this?"

    From what you say, I agree he doesn't sound like Prader-Willi. The other aspects found at birth, such as t he low muscle tone, the hypogonadism, etc all would have sparked alarm bells either at birth or at various check-ups later. You would have noticed significant problems with feeding from Day 1, and behaviour - he would have been screaming for feeding constantly. No way. I have not heard of this being diagnosed so late in life - it's so bleedin' obvious from so early. And so hard to not kill them by letting them eat as much as they want. I mean, we're taught to breastfeed a baby until baby has had enough. "The baby knows," we're told. Not in Prader-Willi. If you bottle-fed, you would have had him screaming for food even after polishing off a big formula bottle.

    Prader-Willi babies also don't have a gag reflex. If they get a gastric bug or food poisoning, they often have to have their stomach pumped. You can't give them an emetic, they simply won't bring it up. If you mother insists he's Prader-Willi, get her to try sticking her fingers down his throat. If he throws up on her (as he should) she deserves it. If he doesn't, then ask the doctor.

    If he's ever vomited, even as a newborn 'spitting up', then it's highly unlikely it's Prader-Willi.

    Good luck.

    Marg
     
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