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Old 05-12-2013, 09:23 AM   #11
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It's likely that our both our sons hearing loss is genetic although the markets they specifically tested didn't show it but there are TONS that it doesn't check. And because so far only our sons have loss and not dd it is likely sex-linked, through me on their X chromosome.

When I shared this info with my mom, she got all defensive saying that there was NO deafness on our side if the family! How could it not come from my dh? As his dad likely had some childhood hearing loss?

Annoying! I'm not blaming her for goodness sake, I have a BS in biology, I took genetics, I know how genes work, anybody can be carriers and unless you get the right combo it won't show up. I tried explaining this but she just acted baffled.

I love my mom and she loves her grandchildren but sometimes her arrogance and ignorance are a bad combo.

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Old 05-12-2013, 09:25 AM   #12
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Opps, missed the part about saying stuff. Really most people don't say anything anymore but the worst thing that was ever said to me was "Are you going to sue the ob?" You know as in a wrongful birth type lawsuit. I knew exactly what cruel direction his question was going. The second most cruel thing was also said at my old workplace. An ex coworker had a stillborn due to a birth defect around the same time my son came home from the NICU. I remember quite clearly my boss at the time telling another coworker "Better dead than..." and then giving a nod in my direction. They thought I couldn't see them but I saw and heard them plain as day. I have a couple more horrific verbal gems from my old workplace but those two were the worst.
your ds is a beautiful child!
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Old 05-12-2013, 10:18 AM   #13
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It's likely that our both our sons hearing loss is genetic although the markets they specifically tested didn't show it but there are TONS that it doesn't check. And because so far only our sons have loss and not dd it is likely sex-linked, through me on their X chromosome.

When I shared this info with my mom, she got all defensive saying that there was NO deafness on our side if the family! How could it not come from my dh? As his dad likely had some childhood hearing loss?

Annoying! I'm not blaming her for goodness sake, I have a BS in biology, I took genetics, I know how genes work, anybody can be carriers and unless you get the right combo it won't show up. I tried explaining this but she just acted baffled.

I love my mom and she loves her grandchildren but sometimes her arrogance and ignorance are a bad combo.
I read somewhere something like 30% of deafness is genetic with an absence of family history. Ironically, DD1s is NOT genetic despite my father being deaf in one ear.
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Old 05-12-2013, 10:29 AM   #14
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Re: Whats the one thing that bugs you the most??

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Opps, missed the part about saying stuff. Really most people don't say anything anymore but the worst thing that was ever said to me was "Are you going to sue the ob?" You know as in a wrongful birth type lawsuit. I knew exactly what cruel direction his question was going. The second most cruel thing was also said at my old workplace. An ex coworker had a stillborn due to a birth defect around the same time my son came home from the NICU. I remember quite clearly my boss at the time telling another coworker "Better dead than..." and then giving a nod in my direction. They thought I couldn't see them but I saw and heard them plain as day. I have a couple more horrific verbal gems from my old workplace but those two were the worst.
OMW! That's horrible! People have no sense of shame. I'm so sorry that you have to hear things like that. It makes me so sad that people act and talk that way. Any child, no matter if they are born healthy or with a disability, is a gift from God! I hope you have a wonderful Mother's Day!
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Old 05-13-2013, 09:32 AM   #15
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I'm storing away all the witty responses for our upcoming trip. We will be out of state for a week and have many people and places to visit. Because DS get overstimulated easily we will have to keep the traveling minimal and allow for him to have downtime. Our family members don't understand his need for this. They think he is just being bratty and manipulative and that we are allowing him to walk over us. People expect tantrums from 2 year olds, not 7 year olds. It's shocking for those who aren't used to being around a child with strict routine needs who's routine has been upset.
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Old 05-13-2013, 11:52 AM   #16
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Re: Whats the one thing that bugs you the most??

He'll eat when he is hungry enough. Ummm, no he won't. Sorry, but he WILL starve himself if I just try to force him to eat what I want him to.
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Old 05-14-2013, 11:30 AM   #17
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Re: Whats the one thing that bugs you the most??

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There are two that drive me crazy, "if that were my child I would" usually followed by some discipline suggestion implying that there is nothing wrong with my child that a little spanking/time out/talking to wouldn't fix. You know because Autism is caused by poor parenting. It really is only worse with my youngest, people don't believe in bipolar in children. The other one is "if you just take red dye/gluten/dairy out of his diet he will stop acting like that." My boys have complex medical conditions and while I am happy to try any and all alternative treatments that will not endanger their health the idea that just removing a single food from their diet will "fix them" or that they can be or even need to be fixed is really irritating to me.
ITA. DSs school is terrible with this. Basically they think everything is a parenting problem. I know they think I'm lying every time I have to tell them, "He doesn't do this at home."
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Old 05-14-2013, 12:26 PM   #18
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Re: Whats the one thing that bugs you the most??

Thanks for all the support to everyone that commented on my post. I worked in a very toxic environment. Being thick skinned was practically a job requirement there, even then I felt those comments crossed the lines of common decency.

I'm sorry about all the comments everyone is dealing with. Most comments on this thread, I have dealt with also. We just don't hear them much anymore now that his adaptive needs are more visible.

Oh as for 'the growing out of a genetic syndrome thing' used to crack me up. I could never stop myself from laughing. Your chromosomes are the blueprint to your body saying a kid will grow out of it is like saying maybe a kitten will grow up to be a bulldog.

I think the saddest mark of ignorance was when ds's first opthamologist didn't believe me when I said pieces of chromosomes can break off and trade places in other words a genetic translocation, after that I dropped him off ds's medical team. Every MD should have a basic bare bones understanding of genetics. I find that level of ignorance from someone who is suppose to be a medical professional pretty darn scary.
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Old 05-15-2013, 09:12 AM   #19
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Re: Whats the one thing that bugs you the most??

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Originally Posted by iris0110 View Post
There are two that drive me crazy, "if that were my child I would" usually followed by some discipline suggestion implying that there is nothing wrong with my child that a little spanking/time out/talking to wouldn't fix. You know because Autism is caused by poor parenting.
That is here. I can't tell you how many people think that disciplining or spanking my kid is going to cure his autism. I'd be the first to try it, if it would work. But spanking my kid who has HUGE sensory issues is not going to solve anything... make things 1,000 times worse, yes!
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Old 05-15-2013, 02:57 PM   #20
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Re: Whats the one thing that bugs you the most??

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He'll eat when he is hungry enough. Ummm, no he won't. Sorry, but he WILL starve himself if I just try to force him to eat what I want him to.
YES!

Also, I'm tired of people telling me DS will outgrow it - even doctors! He will outgrow it by the time he turns 1! Oh, well he will outgrow it by the time he turns 2! Oh, well he will outgrow it before he starts school!
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