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you wanna know why you don't ever see it?


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Just a little vent that I am sure so many of you can share. I want to share some thoughts on why others don't see what we see in our children- first of all THEY ARE OUR CHILDREN, WE ARE THEIR MOTHERS/FATHERS. Would I claim to be able to distinguish the cries of a friend/coworker/aquaintence (sp??) newborn??? NEVER- that's what moms can do. Does anyone else spend as much time with our children as us- no. For all the people that say I don't notice anything. Its because you don't know what to look for. You don't notice that everytime you say a certain word my daughter aches her back, wretches her face, or runs to the bathroom- may not seem to out of the ordinary to you UNTIL YOU SEE HER DO IT 24/7 EVERYTIME she hears the word. Maybe my chid has a harder time with me because she knows how much I love her, how I am trying desperately to get her well, yet she is still suffering- Doesn't a child look to the love and strength of their parents to help them feel better, should we be surprised if they have a little anger because we aren't able to fix them and stop the suffering? I feel like people just don't understand that I didn't CHOOSE to have a child that is sick, I don't choose, to have to spend my time researching, driving to doctors appt, restricting diets, I don't choose to spend our money on dr's, meds, co-pays, deductibles.... that money would be much better spent on a trip to Kauai (or a move to Kauai at this point), I don't choose to have my friends tell me my daughter is a bad influence on their children (very hurtful. None of us choose this, WHO THE ###### WOULD!!!!!!! Maybe that is the best response for all those "loved ones" that judge us. Ask them if they really believe this would be the life you would choose if given a choice????????

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That's why having this forum is such a relief - at least here people "get it". I have had very similar experiences. So often people tell me what a sweetheart my son is. HA! What a joke - he's a holy terror at home, tormenting his younger siblings, ekeing out whatever little strength we have left, always wanting more and going ballistic when we put our foot down. But the truth is, he does have a sweet side that we are seeing more of now on zithromax. However, you get the feeling that they (family especially) think you are exaggerating it. Well, like you said, they've never seen his rages. I told my mother the other day that these specialists (DAN, LLMD, etc) cost a lot of $ for consults, but if they can help, maybe I should try it. She listened politely but reminded me that I tend to be a hypocondriac and maybe it's not necessary to spend that much...but if it were her child and she was in the situation, what would the alternative be - let him deteriorate mentally and see where this disease takes him?

 

Thanks for the vent - and to the forum for being our understanding soundboard.

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I absolutely agree with you and feel your emotions from your past. Did you have a bad day? everyday seems bad with what we mothers and some fathers have to deal with; but was there something else that made you vent today? I'm sorry for your frustrations and hope it gets only better for your family!

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yeah, I am venting cause I had a well meaning friend tell me her daughters behavior changes after they spend too much time with my daughter. In all reality, I can't blame her, but I also feel I am dealing with so much trying to keep my daughter from losing her mind, that I don't want to feel responsible if her daughters are misbehaving. We are good friends, and our kids are such good friends- I need to set my pride aside but I am really having a hard time. I just want to tell her to stay away until my daughter is well so I don't have to feel responsible. I have already become insecure in my mothering because of this horrific illness, and this just adds to it when friends say we just don't want them at your house, she seems ok here, other than her tics, anxiety at times (so they do see something!) Its just frustrating being judged, and it hurts me for my daughter that she is looked at as behaviorally challenged. She does have a very sweet side, and I wish her sickness (mainly OCD right now, tics not present for over 2 weeks) didn't rule her so badly.

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yeah, I am venting cause I had a well meaning friend tell me her daughters behavior changes after they spend too much time with my daughter. In all reality, I can't blame her, but I also feel I am dealing with so much trying to keep my daughter from losing her mind, that I don't want to feel responsible if her daughters are misbehaving. We are good friends, and our kids are such good friends- I need to set my pride aside but I am really having a hard time. I just want to tell her to stay away until my daughter is well so I don't have to feel responsible. I have already become insecure in my mothering because of this horrific illness, and this just adds to it when friends say we just don't want them at your house, she seems ok here, other than her tics, anxiety at times (so they do see something!) Its just frustrating being judged, and it hurts me for my daughter that she is looked at as behaviorally challenged. She does have a very sweet side, and I wish her sickness (mainly OCD right now, tics not present for over 2 weeks) didn't rule her so badly.

I'm so sorry, it is a very difficult situation and unfortunately those not living this nightmare really and truly don't understand. I too blame myself but deep down I know its not my fault nor is it yours. I feel horrible that I don't set up play days for my children, but it is impossible. They don't want to go anywhere without me and I can't have people come to me because they don't act good. Its very hard but u need to realize it is an illness and they can't help themselves. My sons ocd is off the walls. It drivers me crazy because he makes me a part of it. I know he can't help himself but then I wonder why dosent he do it to my husband, why just me. Well... We are the ones they feel most comfortable with, the ones where they can feel true to themselves... How lucky we are lol. I'm sorry I know in this case misery loves company doesn't help. It does not make me gel better to know others are going through ######.

Stay strong!

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hello I just finished a bit of a vent on the ADHD board regarding dds teacher who also just doesnt get it and "never notices any of the symptoms" that my husband and I tell her about.I just finished a note to her since yesterday in a very typical,aggravating conference she basically told me I should medicate dd for ADHD-that she seemed to think I didnt know dd had-even though the school was given her medical document stating she has add and a tic disorder. She also said that dd did buckle down once and got some math paper done quickly when she was told she wouldnt be able to go with the rest of the class to the computer lab unless she got it done,she did so therefore "she can focus if she tries" so I guess she thinks a child who can focus if she tries should be medicated??Apparently dd had a good day today and I received a note saying dd was"focused all day and completed all her work on time. Whatever you said to her sure worked!" I did not include in my note that ADHD can NOT be talked out of a child,but I am very tempted to add a PS.But I figure theres no point in trying to get through to yet another person who just doesnt get it. Last year I stood outside her classroom and watched her do alot of head jerking tics while she was supposed to be writing her name on a paper that was just handed out. When the teachers aide noticed her name not on the paper she says " Come on Emerald why isnt your name on your paper?" I then see the teacher in the hall and ask is shes going back to the classroom she was so I tell her that Emmys ticcing right now and that I could show her since she also "never noticed anything",DD sits about the mid way into the room we take a few steps in and I see the tic and say "see thats it there" and the teacher is already looking and walking in the other direction. And then when I told her later at a conference that I was very offended by her disregard that day she just sat there and said nothing,no apology, no excuse, just nothing. Boy Im glad she retired at the end of that year,so I dont have to worry about getting her for my younger son.She also once told my husband and myself that she and all the other teachers dont see anything and that she doent know what "us people" do at home but maybe we are making things worse by making an issue of it.I know her husband had heart surgery that year,I wonder how she would feel if someone told her "well I dont see anything wrong with him,perhaps youre doing something at home thats causing his pain and weakness"? It sure is odd how others just dont notice things that seem so obvious to us.It took about 2 weeks for my mother(who sees dd almost daily) to notice a tic dd does with her arms that looks like shes doing the Chicken Dance. To me its like HOW do you not see that??!! Well at least we have this forum to turn to when we are tired of being scoffed at :D

Edited by kengela
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Little update, my friend sent me a text this am realizing (what I was thinking) that her daughter's are responsible for their OWN behavior! Wow what a thought- I feel if my daughter can't take credit for the good things they do, then she shouldn't take credit for the bad either. I did mention that good and bad influence is everywhere outside the home so maybe she thought on that a little. Still a little unsettled about the whole thing but I have to be fortunate that I even still have friends at this point, even if their are some bumps in the relationship :)

 

Kengala- your teacher sounds like an insensitve %$&^* (excuse me please) There is no room for you to consider the opinions of people like that in your life- just throw those comments out, hard as it is, just write her off as the most intellectually challenged person you have ever met!

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Priscilla, Thanks for agreeing with me in your take on my dds teacher.Just to give a clearer image of her I have to tell you shes one of those ******* with that not southern,eastern,or mid-west accent but that "I think Im better than you" accents, it just makes her all the more irritating.But at least shes not my friend being irritating so glad your friend at least made you feel a little better.Its so hard that our friends and family just cant understand.But I have one friend who I know in the begining thought I was a bit on the crazy side but now after shes been around dd enough she does see things that most people dont,and amazingly she does seem to "get it". I hope that maybe one day with the spreading of awareness we will all have friends and family who will understand.Oh yeah and teachers too would be nice.

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Priscilla... so glad that your friend came around. I was also going to suggest that while it's possible her daughter is confused or upset by things she notices that are 'not usual' with your child... umm... perhaps the mom could talk with her daughter about your child being ill and help her cope better? Sigh... I so understand the heaping of more pressure. Sorry you had a bad day, but glad things are improving and I hope she addresses her own daughter's needs herself.

 

Kengela... while reading your story, I wanted to 'educate' that teacher myself. Not to mention, return to my dd's elementary school where they were a lot like that. Grrr...

 

My ex, for nearly two years said, "This never happens at my house, so there must be a trigger at your house." Grrrr... actually, what was happening (she recently confided in me) is that:


  1.  
  2. She uses up all her resources around others because she does not want them to worry about or deal with what she is going through, so she works to pretend to be happy and fine.
  3. Her dad (an engineer) does not handle his anger well, nor does he tend to believe her when she says she has a sore throat, headache and nausea (he calls me and I (an RN and the one around her more) tell him it is strep, take her to the urgent care, but he does not, so she has to miss a day of school to find out what I already knew once I get her back on Sunday night). She has told me that she holds it in around him and that he does not believe she is sick, so she just doesn't talk with him about it very much. :( He showed up to the IEP meeting two years ago and said he did not want any 'special accommodations' for her that would be 'out of the norm'. :angry:

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