Do you feel you *caused* the special needs? - Mothering Forums

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Old 01-18-2010, 01:56 PM - Thread Starter
 
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I just read another thread and started thinking.....

I often get upset because I feel that I have caused dd1's problems. If I wasn't harassed at work and under so much stress. She wouldn't have been stressed. If I hadn't had hyperemesis....being dehydrated and vomitting, and medications....she wouldn't have received them either.....

I can't help but think that I had a hand in making her have special needs....

Anyone else?
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Old 01-18-2010, 02:10 PM
 
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I kind of get what you're saying and I think a certain level of that thinking is normal, but if you dwell on it too much I think it could drive you crazy.

My ds was born with a heart defect. Heart defects are the most common birth defect of all and many babies die every year before their first birthday because of heart defects. YET, there is still no real known cause. It drives me crazy because I know two other women who have children with heart defects and we are all connected because we live near each other and our children all went/go to the same preschool. Over and over in my head I try to think of some thing that could have caused the heart defect and something that we would all have in common. I also belong to a "heart" group online and we all realized that 90% of our babies were born in July and August (odd isn't it??).

I sometimes get all wrapped up in that thinking but then i take a deep breath and realize that all that does is stress me out and doesnt' really solve anything. When my ds had his open heart surgery we agreed to be part of a genetics study. They swabbed dh and my cheeks and we had to spit in a cup. That is sort of my way of feeling like i'm helping to find the cause. Because obviously I DO hope it gets figured out someday. But i'm conciously trying to remind myself that no matter what it ISN'T my fault because I obviously did not intentionally do anything to harm my baby. In fact I did everything I could to do everything "right" (eat organic, exercise, no smoking/alcohol etc.)

So sorry if this post is all long winded and confusing...just trying to get all my thoughts out lol.

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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Old 01-18-2010, 03:17 PM
 
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Actually, I have had those thoughts. We know for sure that our blindness is genetic. We've done the gene tests. But there is a definite difference in the degree of expression, the level of disease, between our children. Sometimes I wonder if vaginal birth could have made my youngest two blind. I'm afraid to ask, because I don't want to hear the answer. But I wonder sometimes if the stress of going through the birth canal could have caused some immediate postpartum damage, could have caused the folds to form when maybe the disease would have remained quiescent otherwise. That's tough for me to think about, because after 2 c-sections I had to fight hard to have my last two vaginally.

I probably should ask Dr. Trese about it the next time we go in there, just to hear what he has to say. I know that my FEVR kids have to be careful of any trauma to their eyes, and I know there is a certain degree of trauma in birth. *sigh* It's one of those things that's been haunting the back of my mind for a while, since we found out those two are blind.

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Old 01-18-2010, 04:59 PM
 
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That kind of thing messes with my head from time to time. Logically, I know that I didn't do anything wrong and that I've been a good mom. But sometimes my DDs behavoir is so funky and I wonder if I had done something different earlier if things would be going better now.

So for me, it isn't so much whether or not I caused it, but whether or not I've done the right things and made the right choices to help her overcome. I'll never really know. She is so unique and I only got to make those choices once, so there's no way of ever knowing if she would have done better with different choices.

but everything has pros and cons  shrug.gif

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Old 01-18-2010, 05:04 PM
 
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Dh does. He has aspergers, our 3 bio kids together are all on the spectrum.

I, in no way , shape or form "blame" him. I love our children just the way they are

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Old 01-18-2010, 05:17 PM
 
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I don't know. I beat myself all the time as though I did. Our original Neurosurgeon said what my daughter has is a fluke. But I think that means, they just don't know.

We have an appointment with our current Neurosurgeon this Thursday. If I can remember, I might ask him what the new research is showing as far as causes goes.

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Old 01-18-2010, 07:09 PM
 
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There is certainly a genetic component to my DS's ASD (although we didn't see such before his diagnosis). And there is a known link between maternal depression, which I have, and ASD. It is hard to not consider his challenges to be at least partially my fault.

I would, of course, argue vociferously against the idea of parental responsibility for a child's special needs if someone else posed it about their child, but I think it has got to be pretty normal to look at your culpability when it is your child affected.
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Old 01-18-2010, 07:12 PM
 
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I'll always wonder for Brandon...whether it was the drugs I had for hyperemesis, or if if it was the pitocin, or what (DS has autism). With DD1, she has reactive attachment disorder, and I know it wasn't my fault (she's adopted and had attachment issues from the beginning). DD2 has selective IgA deficiency and the ped said it's likely inherited, so either DH or I have it in our families somewhere...

But it's DS that I'll always wonder about...

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Old 01-18-2010, 08:36 PM
 
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My non-SN parent friends tell me I'm being silly, but I will always wonder if it was something that I did. (Even though the geneticist says no). I know that deep down my husband blames me for our daughters ACC. How could you not wonder? You are made to feel guilty for that extra cup of coffee or that sip of wine, that your feelings even affect brain development, the air that you breathe ... and then told that the disability is not your fault?!

Early on I just accepted my guilt and moved on. Even once in a while I take it out of its box and pet it and feel sorry for myself and my daughter and then put it back.

It's done. What is important is what I can do for her now.

But when it comes time for her to make a decision around having children of her own, I will be examining my part again in detail.
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Old 01-18-2010, 10:54 PM
 
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I go through this sometimes. Even though I know that at least part of ds1's special needs are genetic, I wonder if some of the things I did when I was pregnant didn't make things worse. I didn't know I was pregnant until I was 4 months along. I was on the pill and never had my period when I was on the pill anyway. I was socially drinking on the weekends. Drinking coffee and taking ibuprofen and sudaphed because I couldn't get rid of the headache that I had. So, I do wonder sometimes. But I do try to tell myself that what is important is what I do now.

 
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Old 01-18-2010, 11:27 PM
 
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Yes, I most definitely feel a huge sense of responsibility for my DD's prematurity and resulting "issues". I have a incompetent cervix and she was born at 23 weeks. As a result she is blind with low muscle tone and SPD. I have guilt over my body failing to provide and protect for her. I try not to focus on it but it is there.

Michele - Homeschooling mom to Hadley, (10/03 - the 23 week preemie miracle) and Noah, (08/05)
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Old 01-19-2010, 02:29 AM
 
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I don't think I caused it in any way, but I do wonder about causes a bit anyway, you know?

mainly looking back at physical causes in his infancy or toddlerhood - things that happened very rarely, certainly not more than in the average home, but they did happen and can't have been good things for his neurology... ant spray indoors. mold found in a sippy cup, chewing on car keys. vaccines. you know the drill!

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Old 01-19-2010, 03:07 AM
 
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Quote:
Originally Posted by AllyRae View Post
I'll always wonder for Brandon...whether it was the drugs I had for hyperemesis, or if if it was the pitocin, or what (DS has autism).
if it helps, I did NOT have pitocin with my ASD DD, but I did have it with my typically developing DD. So my vote is a very big "no" for their being a link between pitocin and ASD.

but everything has pros and cons  shrug.gif

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Old 01-19-2010, 04:11 AM
 
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It *is* hard not to wonder sometimes. I don't think I *caused* the issues, but there are aspects that don't really sit well with me either. In our case, my oldest has the most significant issues (ASD and has a dx of ODD). I had hyperemesis during my pregnancy with him and had to take meds until 36 weeks. My middle son has different issues (SPD, speech delay, articulation disorder, ADHD-ish - but overall the behavioural issues are much less with him). When I was pregnant with him I was sick, but not as bad - only took meds until 14 weeks. My baby is totally, totally NT as far as we can see, and I didn't take any meds while pregnant with him (finally found a natural remedy that worked).

We've also wondered about our carpet that off-gassed really badly for a LONG time - it was brand new when we moved in, right at the beginning of my pregnancy with DS1. I don't think anything like that would be the sole cause of ASDs or any other SNs, but I suppose it could play a role. Who knows. There are definitely flags for several of these issues on both sides of our family, so I'm sure that contributes.
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Old 01-19-2010, 05:52 PM
 
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I have been wrestling with feeling guilty about DD's anxiety lately. We are taking her to a therapist next week for an evaluation because it's gotten so bad that no one sleeps much at night here.

I have a history of OCD, panic disorder and depression. I was on Zoloft during my pregnancy and until she was around 4 years old. She nursed a lot. I don't know if the Zoloft effected her except that she was born hypoglycemic. I think there may be a connection there but I don't see how I would ever know. Plus if I did know, I couldn't do anything about it.

Otherwise, I feel badly about some things that are genetic predispositions, even though I have no control over those either. But I feel badly that she is mirroring some of my specific anxieties now. I didn't want to pass this on to her and I feel like crap that she picks up on my stress and anxiety and has expressed anxiety about things I know have to do with my own expressions.

I am hoping once we get into therapy with DD that I can get a better perspective on all of this. Right now I'm kind of in that early phase of finally admitting that DD has a problem. If my parents had taken me to a psychologist early on, maybe I would have been better off now. I really want to interrupt this cycle if possible.

I am a 40 year old unschooling, belly dancing, artist-mama of one almost 8 year old. I just had brain surgery and blogging.jpg about it a bit because it's just so surreal.
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Old 01-19-2010, 06:24 PM
 
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Originally Posted by Starflower View Post
If my parents had taken me to a psychologist early on, maybe I would have been better off now. I really want to interrupt this cycle if possible.
I've struggled with depression off and on since I was a child. My DD was dx'ed with depression at age 12 (she has lots of others issues as well). Hopefully, the fact that she is seeing a counselor and the counselor and I talk about how to handle things will help.

I, too, want to interrupt the cycle.

Sometimes I feel like my negative traits and my DH's negative traits combined in a perfect storm in our child. I'm pretty sure that as a child, he would have been labled with Auspergers if he had grown up in a different time and place.

My DD seemed to get an ASD from one parent and mental health issues from the other.

And our other child seemed to get only our strengths. It really isn't fair.

but everything has pros and cons  shrug.gif

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Old 01-20-2010, 04:48 AM
 
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Since my ds's issues stem from birth trauma, it's really really hard not to blame myself. He's got scaring on his thalamus that has caused seizures, low muscle tone, fine motors issues and SPD (the thalamus is the sensory center, so while it isn't a cut and try correlation, it's a bit too much for coincidence)

He was injured by vacuum suction after four hours of pushing and forty some hours of labor. The OB used it incorrectly, but I still sometimes feel like it's my fault. If only I'd known the benefits of natural childbirth, I wouldn't have had the spinal and my labor wouldn't have slowed. If only I'd made them take it out when I asked them. If only I'd known the risks of vacuum suction, I would have never, ever allowed it near my child's brain merely because I was tired and my ob wanted to get things moving. If only I knew better, his brain never would have been injured, we never would have lost our first weeks together while he was in NICU, he never would have had seizures and he wouldn't have SPD.

I've cried more times than I can count, blaming myself for all of this. Then there are days where I put the blame solely on the OBGYN who delivered him. Or the hospital who sent in an OB who was not board certified without informing me. Or God for giving me a difficult child when I feel I am so weak. And I feel so much guilt for how much more I knew the second time around, and that his sister had a picture perfect homebirth, is never sick, seems to be totally "normal" etc. It's just not fair to him that he didn't get those chances because his mama wasn't educated enough. But I have to move forward and be the best mama that I can to the wonderful boy I have.

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Old 01-20-2010, 05:26 AM
 
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Some of her issues I do.

1. I think I may have caused her sensory integration disorder. I have Aspergers, so either I passed my issues on to her through genetics, or behaviours.

2. Stomach issues.. if I would have breastfed, or if I would have not vaccinated, how do I know she would have eosinophilic colitis. How do I know for sure that she didn't react to a shot.. or that the formula I gave her didnt' mess up her gut. I'll never know. (we did stop vaxing at 12 months) .. also how the hell do I know that didn't cause her sensory issues...

3. I could have eating A LOT healthier when I was pregnant. I didn't research anything. I layed around and though pregnancy was my right of passage to sleep all day and eat whatever. I was so sick during pregnancy, yes.. but I should have put more effort into reseraching. I didn't, at all. the only time I started reading up is when I was told she would be a preemi

4. Maybe if I wouldn't have fed her babyfood, she wouldn't have the food allergies!


There are more.. but some are vaccine regrets, so I don't want to go on a rampage.. although I'm not sure if I'm just wanting to blame something.. insead of myself.

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Old 01-20-2010, 05:13 PM
 
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to all the mamas here.

I am a 40 year old unschooling, belly dancing, artist-mama of one almost 8 year old. I just had brain surgery and blogging.jpg about it a bit because it's just so surreal.
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Old 01-20-2010, 06:23 PM
 
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I haven't responded before now because I've been wrestling with what I really feel.

I don't know.

I wrote about it when my son got his diagnosis, sometimes I go back and read that blog entry and relive the whole thing. I didn't know then how I felt, and I still don't know now.

He has a chromosomal deletion. My husband and I were not the cause (we were tested). It's possible that one of us carries a mutation that causes a deletion, but science does not know what that might be, so they can't test for it, so we don't know. We have two non-effected children, so it's not likely that we "caused" his deletion and resulting syndrome.

That being said...I'm not sure whether I prefer that!! If it had turned out that one of us passed on the deletion to him, then at least we'd know the "why". And it was obviously fully unintentional on our part, so I don't *think* I'd feel too much guilt.

But since neither of us "caused" it, it was just a random act of fate. And I don't like that. It becomes really spiritual to me then...why my kid? Is there some purpose to this? Some reason? I don't want there to be a reason, you know? I think I'd rather a scientifical explanation...that when our two chromosomes joined to create a human being, something went wrong, something was missing, and now our child has an incomplete set of chromsomes.

See...I don't think I can make sense of this.

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Old 01-20-2010, 07:49 PM
 
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I do this too. It was my diet. Or, it was the radiation from the plane flight while in the early stages of pregnancy. Or, it was my fault for drinking city water. Etc etc. I totally understand where you're coming from.

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Old 01-20-2010, 08:23 PM
 
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I have wrestled with these questions and feelings too. It's hard not to!

My son has a syndrome called CHARGE, it involves a series of complicated congenital defects, including a heart defect.

One of the most gnawing questions in my gut, was it environmental? We lived in NYC when I got pregnant with DS. I was in the World Financial Center, the building next to World Trade Center 1 on Sept 11. I was there for all of it. We lived on 27th St on the West side, it smelled like smoldering metal for MONTHS. I watched the trucks haul away debris in front of our apartment, for months. I just can't shake that maybe all of that exposure lingered in my body somehow and manifested itself in my son's birth defects. *I* have never had an issues post Sept 11, (I am registered with the Sept 11 World Health Registry), but I just wonder. They say this was a random fluke. Maybe it wasn't so random.

My husband and I declined genetic testing, so I can't answer that part of the question. We were told we had a 1% chance that another baby of ours would have the same syndrome. So we went with those odds, and had two additional "healthy/normal" babies.
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Old 01-25-2010, 09:08 PM
 
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I often wonder if I caused or could have avoided their health issues.

My children’s prematurity – Could I have done more to avoid going into labor early? Now that I’ve found MDC I see books about carrying multiples longer, eating more protein, etc. I was not informed enough.

My son’s CP – He is doing great now but when he was younger and struggling I beat myself up constantly. I blame myself for many things…allowing the OBGYN to deliver him in such a violent way, not demanding a C-section, not demanding the doctors stop what they were doing, not knowing more about delivery options, etc. I also blame my OBGYN for delivering a transverse preemie in a way I feel caused his brain bleed.

My son’s CMT4f – Could a genetic variance be a result of IVF? We have no family history of CMT. My husband and I are not carriers. My children were frozen as embryos – this can’t be a good thing. They were conceived using drugs and I had to continue with various drugs throughout the pregnancy. We also used ICSI – maybe a sperm that wasn’t ‘meant to make it’ was forced into the egg. We were told when ttc that the IVF processes have no negative affect on the babies – but I’m not sure. It is difficult to tell since so many mothers who use IVF have medical issues to begin with, are older, etc.

My daughter’s Epilepsy – We do not know the cause but wonder if it is vaccine related. I wish I would have delayed vaccines or gave her less/no vaccines.

My daughter’s undiagnosed issues like ‘quirkiness’/OCD – I’m odd, OCD, deal w/depression, etc. I think she inherited these traits from me.

I re-think my decisions and continue to do so:
Would my children be healthier if I would have tried harder to continue breastfeeding?
Am I making a mistake medicating my daughter for seizures?
And on and on…
Does it ever end? I try to ‘make up’ for decisions I regret making in the past by doing everything perfectly going forward. Unfortunately, it is not possible.
Sorry for the rambling…
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Old 01-26-2010, 10:52 PM
 
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My DD is Deaf because of her birth trauma and related NICU experience. In the beginning I blamed myself. "If I had been stronger" or "If I'd asked for the c-section earlier". Then I went through a stage of being SOOO angry at the OB. Yeah, in reality, it is his fault. Who pulls so hard on a baby with forceps as to move the mother down the table?!?! But it doesn't help to be mad. She is who she is, and I love her for it, not inspite of it.
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Old 01-28-2010, 08:38 PM
 
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I do wonder and feel the guilt over my daughter's breathing problems. She was a 33weeker AND with my HG I was on zofran from weeks 8 to 33 and that probably wasn't GOOD for her. I worry that we could have avoided the prematurity if I wasn't working double shifts to make ends meet. There's nothing I can do about it now obviously but I do feel the guilt that I could have prevented this when i see her struggling to breathe and needing multiple breathing treatments and constantly turning up with pneumonia.

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