who's to blame?

[breezy1077]

I know I can't be the only one, but does anyone else obsess about what might have caused their child's "genetic" disability? My DS 7 has pddnos (ASD) and I keep thinking back...is it something I did? ie. I had surgery in my 24th week and opted for local anesthetic. The doctor told me if I started to feel anything let him know. when I did say something he responded that he'd given me as much as he felt comfortable giving me and could I stand it? I quickly said yes. this haunts me to this very day and I can't shake the feeling that maybe I should have waited for the surgery. Also, I probably had an undiagnosed thyroid disease at the time and I've since found out that that is dangerous when you're pregnant (ok I couldn't have done something about something I didn't know about but still...). ANd don't even get me started about the vaccines and Autism link...

Just wondering if anyone else beats themselves up about it and what you do to stop.

 

[jamesmommy]

I admit I have thought about it often. I went into pregnancy induced heart failure when my son was born, and have wondered if it might have affected him. I also have wondered about vaccines. I am pretty sure that some of his autistic tendencies are genetic, inherited from both DH and myself.

I try hard not to dwell on it although it's difficult sometimes, and in my heart I know that even if it was something that "I did", it wasn't intentional. I try hard to be proactive, and to try to make sure he gets the interventions he needs to help him progress. He has come along way since diagnosis, and I am very optimistic about the future (although I admit that I worry about that sometimes as well).

I can't really give alot of advice, as I still have my days too, but know you are not alone. I think ALL parents have these thoughts from time to time, not just those with special needs.
{{{{{Hugs}}}}} to you and your little guy.

Amie

 

[ecki]

Both my kids are "on the spectrum" and as I was researching autism I realized that I probably have a touch myself. I didn't even realize you were supposed to look people in the eye when you talk to them until the therapists kept telling my older daughter to do so! I don't think it was anything I "did" to cause their autism, just in my genes I guess.

Kayla also has Down syndrome. That I know is just a totally random event at conception. Sometimes stuff just happens. Wondering "what if" isn't going to change anything.

 

[LauraVV]

I know I can't be the only one, but does anyone else obsess about what might have caused their child's "genetic" disability?

No. I don't. My daughter was born at 22 5/7 weeks. Our geneticist says that looking at her belly button you can tell that there was some sort of placental problem. Both kids have metabolic disease not otherwise specified. It's likely maternally inherited.

Do I beat myself up about it? No. Is it likely that the kids got this from me? Yes. But.... I didn't know that I had a problem. We didn't know our son had a problem when we had our daughter. We waited a long time between kids because our son had recurrent airway growths (and the docs said that there was little to no chance another kiddo would have these but we were hesitant to risk it). I didn't do this to myself. If I got mad at myself I'd have to be mad at my mom, her mom, her mom, etc. What good does that do?

I know that if we'd have known that we could give our kids these problems we would never have had them. But I'm glad we didn't know. We have these wonderful people in our lives. Their lives are great blessings to many people.

So, I'd suggest asking yourself these questions. Did I purposely harm my kids? Can I control everything? Do I love my child? Is the world a better place with my child? You know something? My kids may be a bit quirky but they're pretty neat people. And I like myself and my husband better now than before our kids. We're all better people.

You cannot change the fact that your kids have issues. Blaming yourself is just like banging your head against the wall. It serves no purpose and it gives you a headache.

 

[jamesmommy]

Ecki,

Just had to tell you that pic of your DD always makes me smile! She is a cutie.

Amie

 

[jamesmommy]

Ecki,

Just wanted to tell you that pic of your DD always makes me smile! She is a cutie.

Amie

 

[Luv Bunnies]

I asked my son's neurologist many years ago if we could point to anything in particular that might have caused his Asperger's. Was it because I had the flu with a fever in my first trimester? What is the vacuum extractor the doctor had to use when he was born? Was it the string of illnesses he got at 5 months when he first entered daycare? The doctor said absolutely not. He said there's no medical evidence that any of those things could cause ASD. Scientifically speaking, there's not enough evidence to blame any one factor - not even vaccines - at this point. Everyone has their own theories and beliefs but the truth is that we still just don't know exactly what causes ASD.

In terms of my theory, I am a huge believer in a genetic link. I think my husband has some Asperger-like tendencies (he thinks he does, too!). My husband was adopted at birth and doesn't have any medical history about his biological family. Both of his parents were deceased before our son was diagnosed so we didn't have a chance to really delve into my husband's early childhood. His older brother (also adopted) just remembers that he was "weird."

I've also noticed this in working with special needs kids. We start working with a child and get to know him really well. Then we talk to one of his parents and we go, "Aha!" We can see where the child gets some of his behaviors and tendencies.

I don't like to use the word "blame" in talking about my son's condition. I truly don't think anyone or anything is to blame. He is who he is and everything about him makes him special to us!

 

[ireland_nicole]

I definitely know how you feel; Both of my kids were born very early and with mult. dx's, so I have guilt about that, but specifically, my DS had a very complicated life before he was born. We were told we'd miscarried, and then more scans 3 wks later revealed a scar line where most of the placenta had seperated and then reattached. (We're told that doesn't happen and then because I wasn't cared for properly (we were living overseas) I went into full HELLP syndrome w/ multi organ failure and was comatose when he was born. When we first realized that he had such significant issues, I wondered if I had fought too hard to keep him, if his suffering was my fault. Also, DD is RAD, ASD and bipolar (among other things) and that's probably genetic as well, although I had no idea. In my case, I have a strong faith that everything happens for a reason, and that my little blessings are exactly who they were created to be. There's so much I don't understand and can't answer, and yes, it's really tough sometimes. Another thing that has helped me is when necessary seeing a counselor and getting support from other moms (like on this board ) It really helps me to get things in perspective. At the end of the day, my kids are who they are, and they have unique abilities and unique challenges, and it's my privilege and responsibility to somehow prepare them for this world. And I don't have to do it alone. to you; I'm glad that you're sharing this feeling; it's pretty common and it's ok. The important thing is to be able to feel it, and then put it down and move on. (And yes, if you're like me, you might keep picking up again occasionally). But at the risk of repeating pp's-it's not your fault, it's not anybody's fault, it just IS. Sorry to talk so long- hope you have a good day tomorrow
Nicole

 

[Schmeck]

Unless you're doing drugs, smoking, drinking alcohol, or in any other way deliberately putting your unborn child at risk, then there is no blame to be placed on any parent who gives birth to a child with special needs. Sometimes it just happens. We can't control everything.

I'm a malignant melanoma survivor - and now I watch my children like a hawk for any sign of it on them. They have a higher risk of developing it because of my genetics, and if one of them were to develop it, I'd be mad at myself because I let them get tanned when they were little, but I wouldn't blame myself - I didn't know then! I was brought up to think that tanning was healthy!

I, too, work with special needs children. Sometimes when I meet a parent, I get the 'AHA' as well, but there's more times when there's no 'AHA' at all.

 

[bookwormde]

As usual my perspective on this issue tends to be unique. Those of you who have read my other posts know that I would have been very disappointed if at least one of my children had not been an aspie. It is my assertion that Aspergers is just a part of the natural genetic evolutionary pathway for humanity. On the whole I consider neurotypicals more disabled than aspies, that is not to say that there are not significant “lack of abilities” that aspies have, innate social skills for example. There are also many differentials in processing a perception, a different EF system based on non-linear processing, heightened and diminished environmental perception sensitivities, hyper-focus capabilities etc. The real issue is that we are being born into a time and society which is based on a genetic model (neurotypical) which came into dominance based on a survival system which core model was the clan/tribal system, which through time has been extended to larger social structures. This model has served humanity reasonably well in the past 10,000 years, with the exception of a few issues (war, discrimination, indifference, cruelty etc). Of course there has been a little “help” from us aspies (philosophers, inventors, artists) but you have done reasonably well.

With that said, on the question, you certainly have nothing to feel “guilty” about when it comes to your child having a part or the whole of the “autistic gene set”. Whether you consider genetics random chance, part of mother nature’s system or part of Gods grand plan, there is nothing that you could have done or can do about it (the likely hood of some environmental event causing this neurovariant to occur is likely somewhere in the one in a million to one in a billion range, not one in one hundred). The issue, which is effected by our lives, is cognitive capabilities. These can be effected by genetic factors (out of your control unless you expose yourself to high dose radiation), health factors and care, and environmental factors. You can be comfortable with the idea that whatever may have effected your child’s cognitive abilities (intellectual stimulation, pre-mature birth, difficult delivery, injury, disease, other unrelated genetic variation or even mercury in vaccines) have had the exact same cognitive capabilities effect on the population at large. We can only do the best we can with the best medical advice available at the time; there is no reason to feel “guilty” about decision base on this (unless you a clairvoyant or precognitive).

The issue is that neurotypicals can “function” in society with much lower cognitive capabilities than can people with parts of the autistic gene set (after all it was “designed by neurotypicals, for neurtotypicals). I believe that the primary reason for this is the level of social skills curriculum needed to successfully integrate into society and the cognitive effort that it takes to learn and implement these skills. This is exacerbated by the fact that the clinical community is just beginning to develop an effective social skills curriculum and society it just beginning to put forth the resources to implement them.

And here is one that I am sure will be controversial, I believe that children with part or all of the autistic gene set, who have other serious distinct disabilities are at an “advantage” to there neurotypical equivalents, because they do not have the same genetic impetus of “societal integration and compliance. We can be very fulfilled being with a very limited number of “good friends” and existing to a great extent “within our mind”. I think that this is the “special” that is seen in our children.

Here is a little long term perspective, great progress is being made in autism in particular and disabilities in general, the future is much brighter. If you have a non-autistic child, with serious disabilities, who is having difficulty integrating into society and can “find” a friend with similar interest, who has part of the autistic gene set, you may find a friend for your child who while recognizing the practical impact of the disability, will not be discriminatory, judgmental or be embarrassed about your child’s disability and will see your child for the great person that they are.

Is the autistic gene set a “dead end”, and adjunct to the neurotypical gene set, or the future of the human race only time will tell. There are indications that the set has dominant characteristics. Society is beginning to understand that this gene may (and has) give significant “survival” and advancement capacities to the gene pool. In the practical areas is we are much more suited to computer interface and extended space travel, our “inventiveness” allows us to adapt to rapid macro environmental changes much quickly and so on. Societally, we are not restrained by the innate discrimination of neurotypicals (we explore all possibilities) we are inherently truthful, and have a heightened sense of “social justice”. Will these differential characteristic be recognized as separate species or sub-species, again only time will tell, from my perspective I think some time in the next 200 years this will happen and we will not be known as a neurovarint but as homoaspieans.

Our children are all part of the grand adventure, our job as parents is to see that they get the resources so that they may live happy and fulfilling lives, not to be what society thinks they should be.

bookwormde

 

[BeckyScott]

bookwormde-

have a heightened sense of “social justice”.

Oh my gosh. I know you had replied to my questions in a different thread, but this was another huge light bulb moment. I'm learning a lot reading your posts.

To the O/P, my philosophy has always been this-

Yes, there was a genetic inclination.

But I believe that our kids were going to be born, one way or the other, they were destined to be born. (I'm not overly religious but spiritual and not sure of the "why", I just know that "it is") Anyway, my kids could have been born to anyone. And I got picked. And so I guess Somebody trusts me a lot. And our son could have been born to a crack addict or to someone who just beat him out of frustration or he could have been born 100 years ago and stuck in an institution. But that wasn't the way it happened. I got picked. And that is both an honor and a responsibility.

 

[carrie6466]

I have been having this thought a lot lately. When I was pregnant with DD I started having contractions at 25 weeks. They stopped them and found out I was having them due to dehydration. I had non-stop UTI's and developed kidney stones. I was on antibiotics and pain killers from the until I delivered, as they could do nothing with the kidney stones while I was pregnant. I had sonograms of the kidneys (and the baby most times) at least once a week from 25 weeks through delivery. Also in the beginning of the pregnancy, they found a lump in my breast (nothing serious thank goodness). Due to a lot of circumstances, I didn't know that I was pregnant until I was 11 weeks along, so...I don't even know what I was doing up to that point.

I was also told by the neuorlogist that with 2 of my brother's children on the spectrum (Asperger's for one and Autism for the other) it didn't surprise her that my DD falls in there as well. I'm still trying to deal with all of this as we just got a dx two days ago.

 

[bookwormde]

Well congratulations on your daughter’s diagnosis. If she is verbal you have done well to get a diagnosis this early (particularly for a girl) and it gives her a great advantage (early intervention with social skills training can greatly lessen her anxiety levels and reduce the potential and level of the co morbidities associated with anxiety). You did not say where she is on the spectrum (not always easy to tell at that age) but if she is in the middle to Aspergers end and you have not read it already I always recommend as a first reading Tony Attwood’s “the complete guide to Aspergers c/2007 available on Amazon for about $25. He is one of the preeminent clinicians on Aspergers and HFA.

Yes there will be challenges but you have been blessed with a very wonderful and special daughter, just be sure to let her know this every day.


bookwormde

 

[fakereadhed]

This is one of the stages of grief- the one where you try to figure out who to be angry at.

 

[mazz1]

i agree this questioning is part of the whole grieveing process

in time you will come to realise that

no one is to blame and there's nothing you could have done to prevent your childs diagnosis

i have two ASD children and i always remember the mil's comments when my oldest was diagnosed and she said " it's not from our side of the family"

my husband replied that our child was a miracle that we made together and he immediately made it clear that there's no sides to take or blame to give for who's responsible

you will have days when you question why you and will be asking yourself is it something you did but that is just part of the normal greiving process

you will also have days when you feel truly blessed for your child and deeply thankful for the differences he makes to your life

 

[breezy1077]

Ok. Thanks for all the support. this is going to be a long reply so hang on...

It probably is part of the grieving process. I took his diagnosis very well, almost to well. At the time it was more of a relief to finally have an answer to many of our questions. And I'm a firm believer of everything happens for a reason, and I wouldn't trade my kids for all the money in the world! It probably is genetic. My daughter is a peer model in the special ed. preschool my DS attended. They have told me that they are going to keep an eye on her because (they had to do a dance around this one because they're not allowed to offer a diagnosis) they pointed out traits that are traditionally aspie. (not her words because she can't say that - mine) I'd had my own suspicions - talked in sentences b4 2yrs old. Is extremely ahead of the curve verbally, Has her own sensory issues (getting a hug from her is a rare thing), teacher points out she's very bright - knows things she shouldn't know at this age, and she perseverates at a high level. She also will spend hrs, if allowed to, doing repetative tasks. for ex. she once spent 2 hrs. lining up coins in row after row until she filled the entire kitchen table. I would have stopped her but I was curious how long she would go (I actually did stop her after 2 hrs and at the point she wanted to clear the table and start all over again ). I know it's not logical and does is not constructive, but the thoughts do enter my head now and then. It's getting fewer and farther between episodes, and I've found prayer actually helps. I was just having a day that I was sick of those thoughts and didn't want to feel alone in them. thank you for all your support. feel free to keep it coming...maybe it will help someone else too. Hugs to everyone! Any thoughts about my DD would be appreciated.

 

[MightyMom]

I have two boys. DS8 has cerebral palsy. Absolutely nothing I did intentionally.... but apparently my body doesn't like being pregnant and I went into preterm labor. He was once 3 pounds. He is now 85 lbs... eats like a lumberjack and is extremely intelligent.

Then there is DS4. I went into labor with him when I was 20 weeks. After lots of meds and bedrest. My body STILL wanted to get rid of him. I went into the hospital on Magnesium Sulfate and STILL contracted. Finally the little bugger was born at 34 weeks. He was HUGE at 6 pounds!.

I breathed a sigh of relief as he reached all his gross motor milestones..... and I was so enthralled that he could roll over, sit up, hold his bottle and walk.... that I didn't really notice that he didn't talk..... he didn't eat normally..... he didn't cry..... he didn't make eye contact. My best friend noticed and pointed it out.

He's been in therapy for these issues for nearly 3 years now..... and he's come a LONG way. (Today he ate 1/3 of an apple!!!!!) We've been told that he's probably somewhere on the spectrum..... but he's never been officially diagnosed.

I think he's an amazing little boy with some quirky personality traits. I think he's wonderful.... I just wish he didn't have to struggle.

Do I blame my self?? I guess I would be lying if I said "no". I hate that I am 32 years old and healthy...... but I can't have more children. I hate that my body betrayed me and now my children suffer because my body was too incompetent to do it's job correctly. Pregnancy and birth are basic human functions that my body just couldn't do. In my heart of hearts I blame myself.

 

[breezy1077]

I have two boys. DS8 has cerebral palsy. Absolutely nothing I did intentionally.... but apparently my body doesn't like being pregnant and I went into preterm labor. He was once 3 pounds. He is now 85 lbs... eats like a lumberjack and is extremely intelligent.

Then there is DS4. I went into labor with him when I was 20 weeks. After lots of meds and bedrest. My body STILL wanted to get rid of him. I went into the hospital on Magnesium Sulfate and STILL contracted. Finally the little bugger was born at 34 weeks. He was HUGE at 6 pounds!.

I breathed a sigh of relief as he reached all his gross motor milestones..... and I was so enthralled that he could roll over, sit up, hold his bottle and walk.... that I didn't really notice that he didn't talk..... he didn't eat normally..... he didn't cry..... he didn't make eye contact. My best friend noticed and pointed it out.

He's been in therapy for these issues for nearly 3 years now..... and he's come a LONG way. (Today he ate 1/3 of an apple!!!!!) We've been told that he's probably somewhere on the spectrum..... but he's never been officially diagnosed.

I think he's an amazing little boy with some quirky personality traits. I think he's wonderful.... I just wish he didn't have to struggle.

Do I blame my self?? I guess I would be lying if I said "no". I hate that I am 32 years old and healthy...... but I can't have more children. I hate that my body betrayed me and now my children suffer because my body was too incompetent to do it's job correctly. Pregnancy and birth are basic human functions that my body just couldn't do. In my heart of hearts I blame myself.

 

[SandrainNC]

Well, my oldest has Down syndrome. It happens at conception. There is an 85% chance that my egg did not split right (sticky egg) and a 15% chance my husband's sperm didn't do something right. So that's that.

Sandra

 

[Ms_Butterfly]

I don't think you should blame yourself. You didn't know. And you can't blame yourself for not knowing, either.

I don't have any children, but have multiple disabilities, some of which I was born with and are genetic. I was adopted into my family when I was a baby, so I don't have biological family health information to look at. Have I thought of tracking down such info. (no interest in the whole meet-the-birth-parents thing)? I have thought of it, but what good what it do? I already have the disabilities and those records wouldn't give sight to a cure, so there's no real point in knowing where my health issues came from.

Do I blame the teens who got pregnant out of wedlock and gave birth to me for my health? No. Do I blame God? No. I don't blame anyone. Everybody has problems in life - some ppl get health problems and some ppl get one or some of all sorts of other problems that are out there. It isn't about WHAT you have/don't have or HOW you got it/got there, but about how you deal with it and do the best you can given your circumstances.

You can't change the past, but you can influence the future.