Edit: It's just about 24 hours now, and this has been a fantastic experience. I really appreciate all the insightful questions, great contributions, and intelligent conversations. And just the good wishes -- it's really cool to see such positive thoughts and interest from people. I'm going to close the thread now, with a link to an image. The "proof" scan was my daughter's actual scan -- here's the real her, along with her big sister.

My short bio: 41 year old father of two daughters; one ten, one six with Down Syndrome.

My Proof: https://skydrive.live.com/redir?resid=6719AFB732E0F059%21116

Comments: 405 • Responses: 108  • Date: 

PumpkinZ1274 karma

•How did you feel or react when you first found out? •How does your other daughter interact with her?

DrUsual114 karma

My older daughter is excellent with her younger sister. She was four at the time, and we didn't try to explain Down to her until she was ~6. She understands that most fundamental piece: everything requires more patience.

So, I'd say that for the most part, she treats her sister the same way any other girls do. They play together, they bicker at times, she's annoyed by her sometimes. She also takes care of her little sister admirably; including her at times that she might otherwise sit out, helping her make a snack, doing her hair and makeup, etc.

The only real difference that I see based on my younger one's DS is that my older daughter is cognizant of potential challenges. She's seen people stare at her sister, and though she hasn't run into anyone being outright mean to her, we've talked about how to deal with it if it happens. She's far more aware of leukemia than the average ten year old, since our friends' son has it and we're just passing through the most critical age for likelihood in our younger daughter.

Overall, I'd say that DS has raised my older daughter's academic interest in all sorts of topics, but when you get down to the day to day business of being a big sister, she doesn't see her little sister as anything other than that.

DrUsual100 karma

We both found out in a pretty crappy way. Ultra short story is that my sister in law was bringing my wife and new baby home, and I was already at home with the older daughter. The doctor stopped my wife in the hallway and said, "Your daughter has Down, call my office Monday if you have any questions."

I found out at home when my wife took me out to the garage and filled me in. I reacted very poorly. I knew our age (34) put us in a "higher likelihood" category, and we were familiar because our best friends already had a son with Down. So, I'd just settled into a "everything went okay" kind of relieved feeling before she told me, and I pretty much felt like I'd been shot.

I had about 12 seconds of outright denial, but knew there wasn't much ground for dispute. As soon as I could that afternoon I went over to see my friend who'd already been through this; I think the direct solidarity helped me get equilibrium better than anything other than sitting and holding the baby.

Second reply for the other question, in case that spawns questions.

laurenbug218671 karma

What kind of doctor would just stop you in the hall with news that huge? That's horrible! How did they not sit you down in the office and give you time to ask questions and tell you what to expect??

DrUsual34 karma

To be honest (not just being mean here) I think that a big part of it was the doctor's age. He was very close to retiring, and seemed to maintain some very outdated notions of Down Syndrome. Also, I think that he was never happy about my wife having a midwife on hand, either. I don't know why he didn't simply say "I won't be part of this scenario" regarding the midwife -- instead, he seemed to accept the assignment, then be cranky about the whole thing.

Frankie_In_Like16 karma

That's horrible, I can't believe someone could be so tactless and unsympathetic about it. It sounds like your youngest has a wonderful family who loves her, though, and that's all that matters :)

DrUsual15 karma

Definitely...and on the bright side, it was very easy to break off the relationship with him; we had absolutely nothing tying us to him, and quickly moved to a doctor who pretty much treats our child as if she's his own.

Almost_Ascended12 karma

So, in short, extremely unprofessional.

DrUsual8 karma

Bingo. And hence, a very short-lived relationship with us. :)

apj073125 karma

It reminds me of how my mom found out that my brother had Down Syndrome. A doctor (not her OB/GYN) walked in after the baby was moved to the nursery and told her that "your baby has a chromosomal disorder" and then walked out. This was 1988 and special needs kids were still being institutionalized. When her OB/GYN found out he lost his mind and chased that doctor down.

DrUsual23 karma

Definitely feel for your family there. It's horrible to think that as late as almost 1990 doctors were still recommending institutionalizing babies with Down, but I've heard similar accounts from people as late as 1995!

apj073113 karma

Wow! I didn't know it happened that late! That is crazy! It's amazing to see how much things have changed.

DrUsual20 karma

I know, isn't that bizarre? I was really taken aback by how recent some developments were, and grateful for others. For instance, my best friends' son had to have open heart surgery (heart perforations are unfortunately not rare in kids with DS) before he was a year old. This was in 2003; his condition was severe enough that if it happened even 10 or 15 years ago...his case might have been hopeless.

Likewise, until relatively recently the prevalent thinking was that people with Down Syndrome had a definite ceiling of learning capacity, and that the ceiling was pretty low.

Now the belief is that there isn't a low, absolute ceiling -- learning is just a much slower process for someone with Down. The potential is still there, but every "notch" takes that much longer to climb. I can definitely attest to that in our situation; my daughter's progress has been amazing, and due largely to the incredible repetition of exercises and therapies with my wife.

xxxdarkhorsexxx9 karma

When I started working with people with developmental disabilities, people with Down's syndrome had the average life expectancy of 40 years. That's increased until today, where they will have a life expectancy near average, 70+ years thanks to advances in medicine, particularly heart treatments/diagnosis. I've known many people with Down's syndrome. The best thing you can do for your child would be to treat her no differently than you would a child born without Down's syndrome. Let her learn from experiences, let her experience the dignity of risk. She will need to make choices of her own in her life, let her make bad choices too, (as long as it is not dangerous, harmful to others, etc ) that's how we all learn. I've seen some parents who over protect and project their fears into their child, hindering their potential. There's a YouTube video that I really like, about Garrett, a man with Down's syndrome who trained in mma. I really admire his parents for going against the usual way of treating people with developmental disabilities http://youtu.be/hJhUfkCtE_Y

The biggest problem I've seen in my work is learned helplessness. Meaning that the person is 100% capable of doing a task but has learned that if they say it's too hard, they can't, etc that others will step in and do it for them. In teaching her be extremely consistent and deliver the same message each teaching opportunity. Your wife and you need to be on the same page.
People with Down's syndrome can lead a relatively "normal" life, as long as their supports are in place.

DrUsual3 karma

Ah, I'm glad you mentioned Garrett! I saw his story a couple months ago on CNN.com and thought it was really inspirational -- I know there's a lot of controversy over it, but I'm all for his cause. It seemed to me that his parents and trainers have been quite diligent about his safety, and now they're trying to facilitate his dream. Pretty much what we should do for any of our kids.

titty_sprinkles695 karma

Agreed, my little sister has DS (born in 2005), and the older doctor brought my parents brochures for "homes" we could put her in right after my mom gave birth. My parents were just like...are you serious? absolutely not.

DrUsual2 karma

Talk about something to shock you out of your shock, huh? "Hey, I know you just got the surprise of a lifetime, but let me add this recommendation for a medieval era treatment of your newborn..."

Jubilee_v12 karma

Did your wife receive prenatal care? An amniocentesis should have easily picked up that the baby had DS. And the fact that you both are a little older should have tipped off the docs to recommend the amniocentesis. Spuds like the docs were incompetent. Cause this is STANDARD care.

DrUsual24 karma

Amnios are not standard, they're optional. We had already determined that we weren't willing to abort regardless of the outcome of any chromosomal testing, so we didn't opt for an amnio. (Though as I mentioned elsewhere, in hindsight, I think that knowing we were going to have Down Syndrome would have prepared us better.)

Maveric19846 karma

Did you opt out of all testing? A quadruple screen test and ultrasound should have been part of the prenatal care...somebody wasn't doing their job properly.

DrUsual17 karma

No, we didn't opt out of all testing. Quad screens, tri screens, and amnios are not standard testing in our hospital system. We had plenty of ultrasounds; ultrasounds are not tests for Down Syndrome. An ultrasound can reveal certain "soft markers," which may prompt a doctor to recommend an actual chromosomal test. The short story there is that our doctor didn't see markers to prompt him for an amnio recommendation.

Frankly, I don't know if the markers were there and he didn't see them, or they simply weren't there. (I can't recognize nuchal translucency from an ultrasound myself, for some reason.) At the end of the day, it's a moot point for us...

Jakedross7 karma

Nuchal translucency isnt perfect, it showed abnormal thickening on my youngest son and he was born absolutely normal and is, in fact, intellectually gifted while my son with Downs Syndrome had all tests come back normal. It wouldnt have made a difference for us either, but it would have been nice to know as well. Parent of a now 13 year old son with Downs, stopping in to say,"HELLO!"

DrUsual5 karma

Howdy Jake! I'm glad you posted this -- I've heard similar accounts from other folks, both the false positives and false negatives, but it's good to see someone sharing firsthand knowledge...

Jakedross3 karma

I just think its important that people know that tests are not the end all, be all for finding out what you are going to get when you set out to have a child. I love all my sprogs, be they the genius honor students working their way through college, my soon to be 18 year old half way through college, my 13 year old with Downs that tells me hes going to be a rock star, my 11 year old that is brilliant and quirky and my youngest that rules us all and wants to be an astro-physicist. They all give me gray hairs and troubles in their own ways, and I would trade none of them for any others. My son with Downs enhanced us all and made us much better people, the tests do people no favors and probably add more stress.

DrUsual2 karma

Definitely, and I think that first line really sums it up. Get whatever testing you want -- the real question isn't, "What does the tests show?" It's "What are you going to do?" In our case, we didn't need any more testing to know what we were going to do.

Frankie_In_Like3 karma

In regards to it preparing you better, I can understand that. My daughter doesn't have Down Syndrome, but when I was pregnant I chose to have the testing done (even though I knew I was keeping her regardless) so that I could better be prepared and educated, mentally and emotionally.

Then again I can also see how getting the test and having it come back positive for a disorder would potentially turn you into an emotional train wreck. All the dwelling on the 'whys' and the 'hows' could be torture for the 3-6 months left until giving birth, and I can understand why people would opt out of the testing.

DrUsual4 karma

Exactly right...second guessing myself now, I feel that it probably would have been better to know ahead of time. But like you said, that might have just made it worse for another few months. Hard to say at this point, though I still lean toward "wish I'd known ahead of time..."

dollface-killah2 karma

But any ultrasound should have also picked this up. I'm confused.

DrUsual1 karma

Ultrasounds don't show chromosomal abnormalities -- if you opt for an amnio, it will, but amnios are optional. Ultrasounds can occasionally indicate the possibility of Down by observing excess skin on the back of the neck, but this is also often a false positive. In fact, someone posted earlier of exactly that happening to him and his wife.

LomoSaltadoMontado2 karma

Being 34 puts you in a higher likelihood category that your child well get DS? Well that's a first..

DrUsual18 karma

Your comment is exactly the point that I made in another response. There is no magic threshold at 35 or 39, beyond which your chances suddenly jump. The fact is that every day of age increases a woman's chances of having a child with Down. A woman who's 34 has far greater likelihood than a woman who's 20. However, the way this is simplified in the media or via "common knowledge" makes people think that everything's stable until you turn 35, then suddenly, Down is more likely.

PapaTrunk57 karma

If a pregnant mother had the insight that their child would be born with downs syndrome and they had the option to abort, what would you tell them?

DrUsual189 karma

You'd be amazed at how often this question comes up in the Down community, and I suspect in other similar communities. It's obviously a very personal choice, and I definitely don't want to start a debate about politics, legality, or anyone else's philosophy of where life begins.

I'll share with you my personal thoughts on it:

  1. Personally, I'm pro-choice. (Don't bother PMing me to discuss or criticize this, please.) If I had known ahead of time, I probably would have considered. (And btw, I'm speaking for just myself here, not my wife.)

  2. Though I say I would have considered it, I can't tell you that I would have been willing to do it.

  3. Now that we have her, it's impossible for me to imagine not having her. I can tell you that if someone offered me a chance to go back seven years with "what I know now," we'd still have her.

I prefer to turn the question around to, "What will life be like with a child with Down Syndrome?" My answer to that is, "It will be challenging no matter what. If you want it to be, it'll also be wonderful."

opticalDeluge53 karma

I admire you for your openness to what life brings. My wife and I chose to terminate a pregnancy at 23 weeks last year because the baby had a serious birth defect. While we knew the physical defect itself could likely be fully repaired, we knew there was a strongly associated risk of mental/cognitive difficulties and ultimately decided that, if we were honest with ourselves, we simply did not have the resources we would need. But I learned alot in that time. I always felt that having the child would have been, to some degree, the morally right thing to do. But we could not do it. As a result my admiration for those who raise downs kids and others has grown exponentially. If I can ask, did you have an amnio or cvs when you were pregnant?

DrUsual25 karma

Nope, no testing before hand. Because my wife was 100% opposed to aborting, we felt it would be pointless to test. In hindsight, I somewhat wish we had. I probably would have been better prepared emotionally if I'd had some time to get accustomed before she arrived.

It sucks that you guys were faced with that dilemma, btw. It certainly opens the door to a lot of tangent topics, but I'd simply say, I don't envy you having to make that choice, and certainly hope for the best for you.

nkdeck074 karma

May I ask why you didn't know ahead of time? Isn't that part of standard testing? I don't mean to be rude, I am really curious.

DrUsual8 karma

Nope, it's actually not part of any standard testing. (In as much as pre-natal testing has "standards," I suppose some hospitals or doctors may include tests that would reveal Down.)

Our first baby was born in our bedroom, with midwives, and there was very little medical coverage. We had a couple of ultrasounds, that was it.

I wasn't very comfortable with that, so we compromised on the second one -- midwife, but at the hospital. Our hospital required some testing, but anything regarding Down was optional. We were trying to be as minimally invasive as possible, especially since abortion wasn't an option for us.

scubasue2 karma

That's what most parents say when their kid turns out much different from expected, and maybe not what they wanted. "I might have made him different, but I love him, can't imagine life without him and would never give him up."

DrUsual44 karma

Yes, many, many parents of special needs kids say that, and I think the vast majority of us believe it.

Note that I did NOT say, "I would choose to have a baby with Down Syndrome in general." We discussed adoption at one point -- the chance of me choosing to adopt a baby with Down Syndrome is close to zero.

I don't deceive myself or anyone else about this. I didn't want Down Syndrome in our lives. Didn't want it before she was born, didn't want it when I was told, and frankly, I'd rather not have it now. I'd also like to be three inches taller and be able to eat Chik Fil A every day while maintaining Wolverine's physique. Looks like it's not in the genetic cards.

The key is that Down Syndrome does not define my daughter. She's her own person who happens to have Down; we can't change that, so we can accommodate it and enjoy her as she is.

TheSpacemang-28 karma

Why are you so afraid to say "abortion"?

DrUsual7 karma

I'm not. I tend to use the word "termination" instead, but there isn't any particular reason.

OxfordCommaorGTFO54 karma

What advice would you have for special education or inclusion teachers working with children with Down Syndrome and their families?

DrUsual86 karma

This is a great question. We're very fortunate that everyone in our school system has been a great partner. Here are some specific pieces of advice for SE and inclusion teachers:

  1. Understand that it's easy for parents of special needs children to be confused and intimidated by the education system in general, and ARDs and IEPs in particular. Even with great help from groups and individuals, the ARD process can add a lot of stress to the parents.

  2. Be aware that the parents are very often self-conscious about the fact that they're asking for something "special" for their child. It's not uncommon to feel inexplicably ashamed of the situation and very aware that "our family is different." You can imagine that that feeling can lead to unintended behaviors or again, stress.

  3. Be honest with the parents. We all want the best possible situation for our particular special needs kid, but we're also aware that our situation puts stress on a system designed for typically developing kids. We may seem unreasonable at times when we're really frustrated by having to balance those two things. Having good, honest communication with our educators helps a lot.

  4. Be open to out of the box thinking. Again, we're cognizant of the strain we put on the system, and very often we're willing to go to great lengths to help with a solution when we have good parents. Example: many special needs kids are enabled by tablets when they can't hold a pencil or write. Can't have a tablet in the classroom unless we have 15? No problem -- if you'll work with me on using the tablets, I'll work with you on figuring out how to fund 15 of them.

  5. Don't use our kids' special needs as a cushion. One trite comment that I hate is that "people with Down are all little angels!" I've got news for you -- my little angel can be a complete shit sometimes, just like anyone else's kid. Yes, she needs more patience and repetition than the typical kid, and sometimes we have to try two or three approaches to make something sink in. However, she still needs discipline, she still needs to learn, and she still needs to realize her potential. Don't let her "get away" with anything just because of her special needs. :)

partypopper15 karma

I appreciate your comment about not automatically excusing bad behavior. I realize that it's not fair to compare conditions or even individuals with the same condition too much, but I have a brother with a mild form of autism. He wasn't diagnosed with it until his early teens, but of course it was apparent that he had his own learning curve and that social interaction wasn't intuitive for him. Keeping in mind that he needed different guidance than his siblings, my parents worked with him on aspects that he had a hard time with but never gave him carte blanche. Any child can learn proper behavior. I firmly believe that my brother's success (he's 19, graduated high school and now has a full-time job at Walmart) is greatly due to my parents' firm but patient work with him. It is hard, long work, but if you make no effort, you are just setting your child up for a worse outcome.

DrUsual7 karma

That's a great outcome, thanks for sharing it! And big kudos to your folks for understanding the reality -- any syndrome or condition changes expectations, but there's one consistent factor with all of them: what the parents or other caretakers put in will have a significant impact on the quality of life overall.

acephalic_saint13 karma

rock on dude. I work with an 18+ program where we teach job skills and self-advocacy to special needs adults. #5 is exactly my philosophy with special needs people. They are PEOPLE who need structure and discipline just as everyone else. They may not be able to do all the things that we are capable of, but they aren't completely devoid of skills and talents. You have to push them, hold them accountable, and only then can their full potential be reached. It's a beautiful thing when you see a student who never had a clue about accountability and having to work to holding a full time job at a grocery store with practically no help.

DrUsual14 karma

I love hearing this; we need more programs like this! Long, long ago I worked as a computer teacher for a school run by Goodwill. One thing that really impressed me about that organization was that they would find a way to teach anyone a marketable skill. One fellow that came through the program ended up working as a night custodian to a large office building. Rave reviews of his work, he'd been there for five years when I worked at Goodwill. And this fellow had no hands...

chetommy9 karma

my little angel can be a complete shit sometimes

lmao! I read this in Louis CK's voice.

DrUsual10 karma

:) To be fair, she probably gets it from her dad!

BoltInMyHead4 karma

I just graduated with a teaching degree and many of my mentors have been encouraging me to go into advocacy for children with special needs. How did you find the IEP process/what would have made it a better experience for you?

DrUsual4 karma

I'd love it if you took that path, we can certainly always use more advocates and people who care! So, we found the IEP process very difficult to understand. You'll find many armchair lawyers in the Down community, because there's so much you need to know about state law.

Example: the school district asked us and other families if we would take our kids to an elementary school five miles away, instead of to the school next door. I understand that they wanted to centralize resources, but still...we didn't want that. One of our neighbors agreed to do it, though, simply because she thought she couldn't refuse.

But back to the IEP. We got some great support from the special needs coordinator for the school district as well as from a volunteer through the Down Syndrome partnership; someone who had been through the IEP and ARD processes for years with her own child. Also, we picked up NOLO's "The Complete IEP Guide." Finally, we weren't shy about asking questions on our Down forums and discussion groups.

Even with those resources, we put a ton of time into trying to understand the ins and outs -- what's the school system required to do? What constitutes a resource versus a tool? What can an aide do or not do? How do we connect her schooling to our non-school therapists? Etc...just getting a handle on all of this, much less feeling confident, took tremendous work.

I think the make or break factor was the cooperativeness of the school personnel. We're very fortunate to have a very cooperative and supportive bunch of folks on our side. After the first year of IEPs and ARDs, we felt we could "relax" a bit and be confident that our educational partners were truly looking out for K's best interests.

If the educators had been neutral and just waited to see what we knew and what we'd ask for, this would be a much more stressful and tougher relationship. And of course, if they'd been outright uncooperative or overbalanced toward the convenience side, this would simply be a nightmare. You hear a lot of stories in the community about families who have run into antagonistic school systems and have ended up moving to a new district.

exitzero45 karma

No questions, just wanted to shout a "Howdy". I'm the legal guardian of a man with Down Syndrome. He's nearly 63 years old and still going strong. When he was born his life expectancy was 6 months. When he was 4, his parents put him in an institution and seemly forgot about him. He now lives in a group home and is doing great. We spend time every weekend together and go on trips and generally have a great time. It's a long story about how he came into my life, but I couldn't be happier that the did. The thing you said about your little angel being a shit sometimes made me laugh out loud. My little angel KNOWS that people think he is adorable and plays right into it, especially when it comes to getting close up to the boobies. Young ladies think it's SO cute and he doesn't know what he's doing. He knows EXACTLY what he's doing.

DrUsual18 karma

This is absolutely awesome. :) I love this guy already. Someone else posted about life expectancy as well, and yeah, the fact that he was born in 1950 and is still alive and healthy -- that's awesome!

I'm really impressed, too, by people like you who opt to care for someone with special needs. I mentioned one of my favorite quotes in an earlier post: "You've joined a fraternity that few men would choose willingly, and few good men would willingly leave." Folks like you who step into it by choice are really heroic, IMO.

classicals35 karma

I don't have a question, I just wanted to say that this is one of the best AMAs I've seen. I really admire your honesty, and you sound like a great dad.

DrUsual16 karma

Thank you! I definitely appreciate the compliment; this has been quite fun to do, and I really like the feeling that someone else might benefit from any of the experience my family's had.

The_Prettiest_Unicor3 karma

[deleted]

DrUsual5 karma

Hey Unicorn, I just saw this reply, sorry for the delay. My wife and I definitely have a difference of opinion on abortion, but it doesn't really impact us as a couple in any significant way. We had to come to an agreement on how to handle it before each pregnancy, but other than that...neither of us is actively involved in any kind of political efforts around this topic, so it hasn't really caused any tension for us.

Humgirl33 karma

What is your plan for her care and well-being after you and your wife are gone? This would be my biggest fear.

DrUsual48 karma

I'm glad you asked this -- this has been my biggest fear as well. I've had plenty of nights that I've been kept awake by this, and it's definitely the most stressful question to me. After my first daughter was born I gained a whole new focus on my own mortality, and after K was born, the effect was about 1000X.

First, we've simply done as much as possible to plan for her guardianship and financial well-being. Our financial advisor immediately worked with us to change our long-term planning to accommodate for her likely need for financial support past my death. We also set up a trust, which takes care of guardianship in case we die abnormally young, and we've started contributing to long-term trust funds to try to prepare.

Frankly, I don't think this fear will totally subside for me until I see about a bazillion dollars for her in the bank.

One other important thing about this topic -- I'm glad that my older daughter cares as much as she does for her sister, but I work very consciously to try to prevent her from feeling like she'll need to be responsible for her sister after I'm gone. I'm glad that she would take care of her sister, but I don't want her to ever feel like she's obligated to sacrifice her own quality of life to do so.

Loco_Mosquito6 karma

Not to be insensitive, but isn't the expected lifespan of a Down person significantly shorter than normal? How does that affect your planning?

DrUsual14 karma

That's another good question. The answer is yes, everything I've read and heard has indicated that life expectancy for someone with Down Syndrome is less than typical. However, current estimates are between 50 and 65 years. The key here is that all current estimates indicate people with Down Syndrome outliving their parents.

This is a pretty recent phenomenon, btw. At the National Down Syndrome Congress two years ago I attended a presentation on long term health of people with Down. I don't recall the actual numbers, but the change in life expectancy has been very dramatic, very recently. I believe that the expectancy of a Down Syndrome person born during WWI was only 12-15 years, and in the 1950's and 1960's it was something like 37 years.

With medical care improving, though, serious issues like heart perforations and leukemia have become less...lethal, I guess. I'm sure there are other factors, though I'm not very familiar with the subject overall.

PrayForMojo781 karma

First I wanted to say that you are doing it right. I manage a group home and your attitude and outlook and planning is far ahead of many families in similar situations. I also would suggest researching organizations in your area and nationwide that provide care (I am sure you have already but I would be remiss if I did not mention it). At some point the medical or behavioral issues become difficult for families to handle alone and many are ill prepared for that but feel they need to continue to provide care themselves even when it is becoming too difficult for them. When that happens, the child suffers and the family suffers and everyone is miserable. There are other options. The term group home has a lot of negative connotations because of the past and some current poor examples but there are group homes and other supported living situations (supervised apartments, companion models, family supported living models) which offer a range of options. There are some truly great organizations I have worked with (and one I currently work for) that can take the stress of being 24 hr caretakers off of families yet still offer the same levels of support and encouragement and a level of love and compassion. The team at my house treat all of the folks who live in the home like family and make sure they are accomplishing all of the goals they have for themselves and enjoying their lives fully. I am consistently amazed by what my team accomplishes and how happy the folks at our home are. These living situations are not like the medical style facilities of the past. HIPPA prevents me from sharing any personal stories but I want you to know that there are some amazing CCBs and residential providers out there that can support you and your family when that time comes. The most important thing is preparation and getting on the waiver lists EARLY so financial resources never become an issue. The wait lists for services are tragic and people often wait 20 yrs for slots to open up so planning is key. Anyway, just wanted to say good job sir and you're doing it right.

DrUsual2 karma

Thanks very much, and thanks for sharing more about group homes -- we haven't gotten very close to the "moving out" scenario yet, so I don't have much direct experience, but everything I've been hearing reflects what you've said.

One of my close friends just had a 25 year old son move into a group home, and his simple summary was, "It's the best thing ever for him and us." He mentioned specifically that his son feels like much more of an adult by merit of living outside mom and dad's house, and that's certainly good for his long term mental health.

Great point about the waiver lists, too; I failed to mention that at some earlier opportunities. We've had my daughter on waiver lists for a couple of years now. I admit that my wife knows more about this than I do, but essentially, there are services or benefits that can apply to her when she's an adult that we need to have her on lists for now, right? We may not end up using those benefits if we don't need them, but to have the opportunity we had to qualify her ASAP.

Like I said, I don't have detail to post, but I know that it's important to talk with a local service organization or community to find out more about that kind of long-range planning. (And I really should know more about it, rather than just leaving that on my wife...)

CommissarCallahan27 karma

What advice/criticisms would you give to new parents who "fear" that they will have a child with a disorder, such as down syndrome?

DrUsual50 karma

First, I wouldn't criticize anyone for fearing this -- it's ironic that I had a very significant fear of this and voila, it happened. Go figure.

Fear can turn into very negative stress, though, and it'd be good to do something productive about that. I have a few pieces of advice about that.

First, understand the math -- most people know that Down Syndrome (and many other syndromes) are more common when babies are born to "older" moms. However, I think there's a common misunderstanding about this: people kind of think that 34 or 35 is the magic threshold, and that a 32 year old woman's chances of DS are the same as that of a 20 year old. Not true. Every year increases the chances; if you're the type to start planning your family at 20 or 25, you might take that into account.

Second, if someone's not pregnant yet, I think it's important for the mom and dad to talk about the possibility of birth defects and be on the same page with what you'll consider if it happens. Make (tentative) decisions before you get pregnant -- are you going to test pre-natal? Are you going to consider terminating? If so, under what circumstances? Yeah, your outlook can change once you are pregnant, but at least you can start out in sync.

Finally, if someone's already pregnant...same question regarding termination; let's not beat that one to death. Make some decisions on that one before testing. Next, UNDERSTAND THE TESTS. People often don't recognize the accuracy ranges of the tests that are out there, and a false positive, false negative, or simply not understanding likelihood versus certainty can be a big complicating factor.

This is related to a question I get a lot -- even if you aren't going to consider abortion, is it better to know beforehand? I've debated this one a lot, and for me, the answer would have been yes. I would have liked to have been more prepared. I think it would have been less of a blow that day, and I would have been able to provide better for my family if I'd known "ahead of time." Also, there are fantastic resources and communities out there for DS and similar conditions, and the earlier someone plugs into those communities and support groups, the better.

IndexPlusPlus20 karma

Do you ever feel that having to care for the down syndrome child is compromising the upbringing of the other one? (I'm sure it isn't and you're an amazing father ;D)

DrUsual51 karma

That's a great question, and I think it's something people should think about without feeling defensive. The answer is certainly, "It could."

We're very careful to divide time up so that my older daughter doesn't feel slighted or ignored. For instance, every summer, my older daughter and I do a week long adventure trip somewhere; we take a road trip, go hiking and climbing, visit another city together, etc. We have weekends that I'll do something with my younger daughter while my older gets one on one time with my wife, and we make sure that the older one is fully supported in her interests; dance classes, choir, robot camp, piano, etc.

Besides ensuring that they both get one on one time with us, I think it's also important that we don't use Down Syndrome as an "excuse" in any way -- it doesn't excuse my younger daughter from behaving well, it doesn't excuse my older daughter from any of her responsibilities, etc.

ITRAINEDYOURMONKEY20 karma

As a scientist, it makes me really happy that you listed robot camp. It's great to see families encouraging/allowing their daughters' interest in more "boy-ish" activities

DrUsual20 karma

I have three brothers, and now two daughters (you can imagine how happy my mother was to have granddaughters) so it was a bit of a weird transition for me. :)

My philosophy with my girls is that I want them to fully enjoy being women, but never have them feel that being a woman brings any disadvantage compared to a man. My older daughter loved robot camp, and we followed up with buying a bunch of Arduino stuff and learning to build our own. She goes with me each year on a hiking trip; eight miles roundtrip in the Comanche National Grassland when she was nine years old, just so we could measure fossilized dinosaur tracks. And this summer...we were at Carlsbad Caverns and she volunteered us to help with a cave swallow study. It was the most fun we've ever had while being pooped on!

Coondidntmakeit1 karma

I wish I went to robot camp.... You seem like a rad dad!

DrUsual3 karma

Man, if they'd had robot camp when I was a kid...every summer, I tell you...

cbay1817 karma

What has been your biggest hurdle with the medical community? In other words, what would you like doctors to have done differently?

DrUsual51 karma

We had a very, very bad time with the original doctor. He was told by the nursing staff at the hospital that our Friday night baby potentially had Down; he realized that that was going to delay things, so he decided to just wait until Saturday morning to come in. (My wife's birth plan with the hospital called for the quick check out and go home on Friday night.) The midwife had already fled the scene after shaking my hand and congratulating me; she didn't want to be the one to tell us.

So, on Saturday morning the doctor realized no one had told us yet, and pretty much dropped this on my wife while she was waiting for the elevator. He "didn't have time" to answer any questions then, but told her we could visit his office Monday.

As you can imagine, at 8:00a on Monday we were at his door. The receptionist told us that it was odd he'd said that, because he didn't work Mondays.

Lack of sensitivity. That's been our biggest challenge with the medical community.

Fortunately, that challenge didn't last long. We very quickly got referrals for a pediatrician who was considerably younger and welcomed special needs patients. We've also worked year after year with a geneticist, and an amazing array of physical therapists, occupational therapists, and speech therapists. My wife's chiropractor even did some research to see if he should know anything specific about DS.

So, turning the question around a bit, here's the biggest positive I've seen with the medical community: doctors and other practitioners who take the time to answer my questions. It's amazing how much stress and worry is relieved by simply five or ten minutes with an expert who'll patiently answer your questions, even if he/she has heard those same questions twenty times before.

God_Bless_Texas19 karma

That doctor deserves a good ass whipping.

My wife and I were told the day before our daughter was born that it was likely she was downs due to the tissue on her neck being larger than normal.

That night I hardly slept and my wife was a basket case. I think this information is actually what put her into labor. To go nine months and suddenly be "informed" of this information was a shock. I cannot imagine your case, although I do I have an idea.

As it turns out, our daughter does not have downs. It has freaked us out on the idea of having future children.

It forced many thoughts of "what is downs, really?" over the coming weeks as I kept thinking that maybe she was downs and it just wasn't evident or whatever. Lack of sleep makes you think funny things. At any rate, I think I found that downs creates a very sweet and kind individual.

I hope that your daughter has nothing but a beautiful life.

DrUsual3 karma

Damn, I don't envy you that experience. Somebody asked on another question about being able to detect Down from an ultrasound, and your example is exactly the kind of thing I'd fear in that instance. Hopefully that night was the most stressful you guys have experienced with your kid(s)!

Bassgasm1017 karma

[deleted]

DrUsual28 karma

I mentioned some general things about pre-birth already, but this is specifically for the situation you're describing, a dad-to-be.

If you're one of those rare guys who truly feels like this is no big deal and you're not experiencing any negative emotions about the situation, I'm very happy for you, and you can probably skip the advice below.

Otherwise...

Man up, right now. I know it can feel like a disaster; it sucks, you're worried, you don't know what to expect, and it's definitely not what you WERE expecting. But realize that it's not going to be all bad. In fact, most guys who have been there for any length of time will tell you that it's not any worse nor better than having any other child.

You've joined a fraternity that few men would enter willingly, but likewise, few good men will willingly leave.

I think it's important to find someone immediately with whom you're comfortable talking about your feelings. Very often guys feel a particular social stigma; they're not "allowed" to feel negatively about the situation. I've met a lot of other dads who, at some point, each felt that he was the only jerk who didn't think Down Syndrome was the greatest thing ever.

That's not fair to you, and you need to know that the negative emotions are natural. It helps tremendously to have someone to talk with about them who isn't going to condemn you for it or make you feel like they're not acceptable, so you can get it out and focus on all the productive positives.

Bassgasm108 karma

Thank you so much for your response, I'll definitely find a good friend to talk things out with. I really enjoyed your AMA and I'll be sure to do my best in the future and follow in your footsteps. Thank you again.

DrUsual14 karma

BTW, Bassgasm, I wasn't sure if you were asking about for yourself or just a general question -- this particular subject is really "near and dear" to me. Feel free to PM me if you'd like to chat more about it.

Also, I strongly recommend looking to see if there's a D.A.D.S. group in your area. Dads Appreciating Down Syndrome. I'm not so big on the "appreciating" part of the name, but it's a fantastic organization.

Protodox13 karma

I don't really much to say, but I think people with children who have disabilities are badassess. It takes a certain person to he string and patient with a child that has a disability. One reason why I don't want kids is because I am scared shitless of having a child with a disability. You dudes have my respect.

DrUsual15 karma

Thanks, that's really cool of you, though I'll disagree in my own case - before this I would have said I'm the last guy that should be the dad to a special needs child. :) I'm not patient by nature, and my idea of fun with my kids is learning to build a robot, program an app, or hike up El Morro, not change diapers and work on counting. I guess we learn, adapt, and do what our kids need us to do, though, right?

Byrnet11 karma

[deleted]

DrUsual35 karma

Okay, I've been thinking about this one for a couple of hours now. It's a really good question, and I didn't want to just drop a surface-level answer.

The short story is, I want her to grow up in a world where the differences caused by her chromosomes don't cause her to devalued by the rest of society.

I'm not going to say, "I want her to be treated like everybody else." She's not like everybody else. (For that matter, nobody is. :) )

Here's an example. I don't want anyone to be obligated, whether it's by law or by emotion, to give her a job. If she feels that she's capable of a particular job, I do want the employer to give her honest consideration.

I don't want her nor her supporters/caretakers to have to worry that she's more likely to be exploited or victimized more than any other person. Inherently, she has a greater chance of being a victim, of course. It's going to be up to her, me, my wife, and others who support her to help build a life where she isn't exposed as much to potential crime or abuse. But ideally, I'd like her to be in a place where I believe people are not likely to take advantage of her.

I want her to be recognized as a person. That might be the best all-encompassing statement for societal ideal.

Oddly enough, in the past month I've run into two down-the-street neighbors whom I hadn't met before, but both had seen my wife taking our girls down to the park. The first neighbor asked me, "Is your wife the one with the girl with Down Syndrome?" The other one asked, "Is that your wife, the lady who always has the two beautiful girls with her?"

You can guess which one of those is the model I'd like to see for society...

DrUsual7 karma

I'm going to come back to this one. I think it's an excellent question, and I want to give you a bit more thoughtful reply than straight off the cuff.

devonclaire3 karma

I would also like to know this. I don't run into people with Down very often, but when I do I try to treat them like I would treat anyone else. I give them the same respect I would give to any other human I have just met. I try to not draw attention to their condition, but I obviously can't help but notice. I always wish someone would tell me if I should do anything differently when I meet someone with Down.

I have very good intentions and would never want to project anything less.

OP, thanks for this AMA. You sound like an absolutely fantastic father.

DrUsual5 karma

What you just described is exactly what I like to see, personally. It's important to know if she's capable of doing particular work or understanding some aspect of society or safety...but heck, that's true of anyone.

When I hire people at work, I need to evaluate whether they can do the job at hand, assess their performance, and sometimes adjust the job fit.

When we go to the rodeo or the mall, I need to be aware of whether my ten year old can safely go to the restroom on her own, allow her to handle her own money, and learn from her own mistakes, right?

No different for my child with Down -- her limitations vary from other people's the same way that the skills of two employees at work vary...

gazelle429 karma

Did you know she had down's before she was born (I cannot tell if the form is an amnio)?

DrUsual15 karma

See above, answered this a bit. Nope, had no idea. We didn't do any testing because my wife would not have aborted, no matter what. Hence, we felt the testing was a moot point.

I said this earlier, but I think it's important so I'll repeat it: it's very important to understand the results of any pre-natal test. People often think that a test has excluded the possibility of Down, when the test results are really saying that Down is a low probability.

Likewise, if you're going to make a life-altering decision based on a test, I think you'd want to be awfully convinced of the accuracy and certainty.

scubasue18 karma

Not arguing with your choice, but keeping a pregnancy is also a life-altering decision.

DrUsual9 karma

Exactly right, no arguments from me...

Anti-propaganda8 karma

Can she speak?

DrUsual39 karma

Yes, she speaks very well. People with Down Syndrome often have difficulty with speech for two reasons: first, there are many physical symptoms that affect the mouth, which can make speech challenging. Second, the cognitive processes involved with learning to speak are affected by mental retardation, just like any other learning.

We started K in speech therapy when she was six months old. The therapist started exercises with her to help improve her jaw and tongue musculature and to increase her sensitivity/awareness of the intricate way in which the jaw, lips, tongue, and lungs all work together. For every repetition with the therapist we did about 100 more reps at home, and I think this has made a huge difference in my daughter's speech development.

She's using complex sentences, will tell you stories, and loves to sing. She'll talk on the phone, and we can see her sense of grammar progressing, just like it did with my older daughter. Overall, there's no reason to think that she won't continue to improve and be a very verbose, articulate girl. :)

Ummas8 karma

I have a 6 year old with downs as well. Her speech is behind where it should be, so we've been told. Her brother who is 3, and autistic, has been actually teaching her a lot of new things since he started talking. Also it probably didn't help that she has been in and out of hospitals for her heart problem since birth. We are told that has impaired her speech as well.

DrUsual6 karma

Ummas, you raised two excellent points I there. We've been very, very lucky that K hasn't had any of the huge, threatening symptoms, like the heart perforations. Definitely, dealing with those kinds of challenges makes it difficult to pick up on speech.

Likewise, I think K benefits greatly from having a very social and articulate older sister. Even when it's just the two of them, MD's always talking with her, so K feels the urge to respond in kind. :)

Bran_Solo8 karma

My wife and I are 30 and not planning on starting a family for at least a few years. Your post just scared the shit out of me!

DrUsual32 karma

Why? It's mathematical fact that your chances of Down go up significantly as you age, but it's also fact that it's still a relatively low likelihood. And even if it does happen to your family, it's a game changer, not a game ender. I have an awesome daughter - that's obviously not the end of the story, but it's the important part. :)

sharingtime9 karma

Take a look at the curve, it's not that bad around 30. http://en.wikipedia.org/wiki/File:Maternal_Age_Effect.png

DrUsual6 karma

Thanks for sharing that chart; I was looking for one earlier, but couldn't find it. I've also seen a numeric year-by-year grid, which illustrates the same thing.

To me, the most important thing is that even by age 40, you're still talking less than 1%, right? By that token, you could argue that age is a relatively moot point.

On the other hand, the difference between 32 and 35 isn't much more than the difference between 32 and 22.

I think my point on this topic is the psychological impact of the "common knowledge." People often believe that 35 is THE threshold, which can make the news hit a lot harder when you think, "But I was only 32..." Or, they plan to have the baby at 34 to squeak in under the "deadline," not realizing that compared to 25, 34 and 35 are virtually the same.

LewdConduct3 karma

[deleted]

DrUsual4 karma

I agree...I work in business intelligence, and I hate to see numbers tortured as they are on a daily basis. I pretty much sum up Down Syndrome with one key statistic: it's 100% certain that my youngest has it. :)

effyoucancer8 karma

If I may ask, what type of profession are you in? Youre very well spoken and seem to have a better handle on this than anyone ive ever spoken to. Kudos to you and your family. And Merry Christmas!

DrUsual8 karma

Thanks very much, I appreciate the compliment (and the holiday wishes!) I manage a team of IT folks for a technology company. Our organization is distributed worldwide, so we rely a lot on written and other virtual communication channels.

Also, I've been writing fiction and screenplays for decades. I'm definitely a semi-pro (or maybe even semi-semi-semi-pro) at that, but enjoy it considerably. Generally speaking, I sell just enough fiction to satisfy my craving for an audience and to keep writing. :)

SilverStampede8 karma

Hello DrUsual, Thank you for your post. My son is 9 years old and diagnosed with Down Syndrome. I share many of your sentiments. The Dr's at the hospital that gave the diagnosis were unbelievably heartless when my son was born. After delivery, instead of cleaning him up and putting him in his Mother's arms, like they did with our daughter, the Pediatricians left him in a warming tray with blood on his forehead, and the Dr's announced, "Your son has Down's Syndrome", and left the room. I personally wiped the blood off my son's head, and put him in his Mother's arms. Then I went outside the delivery room and told the Pediatrician she had the bedside manner of a sniper. So we had trauma squared on that day. This was at Cedar's Sinai in Beverly Hills, supposedly a 1st class facility. Also shocking was our large group of friends and family who avoid almost all contact with us now. Something like this tells you who your real friends are. Glad to say others have stepped up and proved themselves as real friends. Not a day goes by that I don't wonder how he will be supported when I pass away, because we are just barely scraping by financially right now. Not sure if any of your experiences compare to mine, but my son just turned 9, gives us tons of joy each day, and I have come to realize that he is not the gift we were expecting, but is actually the perfect gift for us. God Bless you and your family, I think they should re-name it Up Syndrome.

DrUsual2 karma

I'm with you there -- the ironic thing is that once you get past some potentially devastating hurdles, like potential heart problems or leukemia, it's 95% like having any other kid. Yet, people just expect day to day life to be hugely impacted, and some of them flee your life because of it.

We've been really lucky that that hasn't been the case here, for the most part. Both our families have been wildly supportive, and I think our friends have largely stuck around. I kinda feel like those who aren't around much have shied away more from "couple with two small kids" than "couple with Down Syndrome" baby. :)

Arioka7 karma

Have you considered establishing care with a pediatric physiatrist? They essentially are primary care for pediatric patients with special needs. They may help guide you towards resources you may need down the road as your daughter grows up.

The field of Physiatry ( or Physical Medicine and Rehbilitation) is known for helping people live a better quality of life within the scope of their disability and getting patients connected with OT/PT/ Speech Therapy, education for special needs, etc. I'm a first-year resident in Physiatry at the Unviersity of Arkansas and just can't help reaching out to people who may benefit from he resources the field has to offer. PM me if you have any further questions.

PS Kudos to you for being such a proud father of such wonderful kiddos!

DrUsual2 karma

Definitely (and thanks for the kudos. :) ) After our horrible first experience with a doctor, we landed with an excellent system of doctors, including a pediatrician who focused primarily on children with special needs. I assume that as K grows up we'll be building new relationships with doctors whom we'll want to stay attached to her into adulthood.

Also, something that I think falls into your area of study -- I picked up the book "Mental Wellness in Adults with Down Syndrome," by McGuire and Chicoine. It's great stuff, and I'm going to keep following their work and their organization as my daughter gets older.

calamityphysics7 karma

You've talked about finding out about her condition 15 hours after birth.

Didn't your baby "appear" to have Down Syndrome at birth?

DrUsual7 karma

Surprisingly, no. My wife and I both overlooked something that should have been a dead giveaway -- K has the abnormally separated space between her big toes and the next toes. We missed that when we were first cleaning her up, though, and of course, we wrapped her up very quickly. In our defense, my wife had just dropped a child without any medications, and, well, I'm not the kind of guy who likes to catch the baby and cut the cord...I'm more of the hold her hand, and cuddle the baby inside the nice clean blanket.

More to the point, K has a surprisingly low presentation of physical symptoms. The toes, which I mentioned earlier. Hypotonia, but that's very difficult to see at birth. She does have unusually small ears, and as she's gotten older, her face has flattened out a bit to display more of the "Mongloid" type overall look.

Aside from that, though, she's very low-symptom. In fact, we've had people look at her and think that we're telling a bad joke when we say that she has Down, occasionally...

AllAccessAndy4 karma

People with Down obviously have the various facial characteristics to some degree, but they can vary quite a bit. Add to this the fact that new born babies are all really weird looking and I'm not at all surprised that OP wouldn't realize that his daughter had Down right away. My cousin with Down syndrome expressed very little of the common facial characteristics when he was younger. For at least the first 6 months or so, I would doubt a stranger looking at him would have even thought he might have Down syndrome.

DrUsual10 karma

Hah, we have the same perspective on babies -- they all look like Winston Churchill to me.

And your comment about six months definitely rings a bell; I've actually heard a few stories about doctors who didn't see the signs of Down in a newborn, and parents not realizing it until their child was as old as two years. It's almost unbelievable, and it's heartbreaking to me. I was devastated by thinking we'd "dodged the bullet" for less than a day and finding out I was wrong. I can't imagine being told at 12 or 24 months...

joopdawoop7 karma

Have you or your family members been surprised by things she has done that you previously thought she could either not understand to do or care to?

DrUsual31 karma

Definitely. We're sometimes surprised that "the moment" has come on something she's trying to learn. Down provides a really fascinating look at "the moment." When I'd try to teach my older daughter something, she'd see it done a few times, try it a few times, and she's got it.

With my younger daughter, it may very well take 100 repetitions or 500 repetitions. Sometimes she seems to just be not ready for something to click. "The moment" when it does click for her can be prolonged over the course over a day, a week, or a month. So, we're surprised quite often that she's doing something we didn't think she understood yet.

One example is the TV controls -- I can honestly say that my six year old with Down Syndrome is better at manipulating the TV, audio system an Xbox than my mother. (Sorry, Mom.)

We didn't think that she'd really understand the concept of caring for my older daughter's guinea pigs, but it turns out that she loves to do that and will often check on their water or food without anyone asking.

Also, I still remember the very pleasant surprise when on a business trip last year and hearing that she wanted to talk with me on the phone. Awesome stuff. :)

Cascius2 karma

It is very fascinating how much they actually do comprehend. Even if they might not actually communicate it to you in a way you understand, they still get it. My older brother, 30, (I'm 27) also has Downs, and even though I've come to terms with it, my parents often seem surprised how quick he picks up on things - especially the technological stuff. He handles the TV and the computer better than my parents. He is pretty much always aware of what he's doing, people just seem to confuse his disability to talk proper with not comprehending. He is a big goofball that often does not say much, but he is the most loving person I've ever met, kind, sweet, and funny, and I would not trade him for anything. And neither would my parents. Sure it can be a lot of work, especially in the earlier years, but hey, you end up with a grown up child that is full of happiness and love, and that is pretty freakin' awesome if you ask me.

DrUsual2 karma

Definitely! You just reminded me of one of the Down Syndrome adults who comes to our local DADS meetings. He can tell you everything about one of our college baseball teams. He knows the players, the stats...while I can pretty much tell you that "The Natural" was an awesome baseball movie.

nikkicupps7 karma

After years of seeing children with Down syndrome integrated in public schools, the damage and stress it has put on the entire student body, I would say that integration is a scary idea. This is purely based on my experience which Is biased.

How do you feel about integrating your daughter into a public school? Would you choose to send her to a special educational school dedicated to give her a more stable and understanding education or public school?

DrUsual19 karma

I'd say that you're presenting an apparently very vehement opinion based on what's likely a very limited experience and observation. The success or lack of success from integration ranges widely depending on the people involved in any particular situation. To classify all integration as "damaging" is ridiculous.

As far as individuals go, integration is an excellent course for some and a poor choice for others. I can talk more about this if there are questions that don't start with an overwhelmingly negative assumption. :)

FluffySharkBird6 karma

As a high school student, I've found that it depends on how the special ed child is dealt with. In middle school there was this kid who always smelled bad and yelled a lot during math. It was very disruptive but they never did much about it. But in a different school I had a special boy in my theatre 1 class and they dealt with it well so it was fine.

DrUsual2 karma

That's a great illustration of that combination of people I mentioned. We see these kinds of scenarios already with K in kindergarten. Quite honestly, it took longer for her to learn that kicking isn't nice than it took other kids. The teachers, though, let us know that she was having a significant problem with that. They were patient with her, worked with us to find the right discipline and messaging to get through to K, and eventually K learned it.

If the teachers had acted differently or we hadn't been responsible participants in the problem, I think the kicking episodes would have turned out more like the kid in your math class.

Feenixstud5 karma

How well do both sisters interact with one another in terms of recreation?

DrUsual15 karma

For the most part it's very similar to other combinations of 10 and 6 year old kids. They play together a lot, and there are definitely times that my older daughter prefers to be by herself or only with kids her own age.

One of the things I've observed most is that my older daughter is far more patient with K than other kids might be with their younger siblings. (Definitely more patient than I ever was with my younger brothers.) When we're at the park or a playground, MD will stick with K and help her with the jungle gym, make sure she gets safely to the top of the slide, etc.

K is clearly inspired by everything MD does. K was almost completely uninterested in her tricycle or Big Wheel until she saw MD riding her bike, for example.

AlmostDisjoint5 karma

Hi -- I've been a reddit lurker for a few months, your post brought me to making an account. I am a 47yo man, have a 41yo brother with DS (we also have an older brother, 51yo). You seem to have already figured out, but I will reiterate: you and your family are in for a great ride. People have asked me many times what it's like having a brother with DS, and I never have an answer, because I don't remember much from before he was born, so having a brother with DS is what is normal for me. I usually turn the question around by asking what it's like NOT having a brother with DS, and no one has ever been able to answer me. He's family, that's the only thing that matters. My younger brother still lives with our parents, they are in their 70s now, and they have gone to great lengths to make sure my brother will be OK no matter what the future holds. If you have any questions, I would be happy to offer whatever insights I can.

DrUsual4 karma

Hey, this is GREAT to hear! Guys like you have made a huge difference in my outlook. One of my neighbors has a 26 year old son with Down, and I think it's enormously beneficial for new dads to hear from people with longer experience that things are just...good.

I'll PM you shortly, I'd love to get your take on something in particular...

WickedHaute2 karma

I'm a waitress, and I wait on an older man and (I'm assuming) his adult child with Downs. I love them. The father is a wonderful customer and his son is charming as all hell. They make my day.

DrUsual2 karma

You know, I'm not sure that people like you always realize how much that means to us parents - it means a lot. Yesterday we split up for a night out; my wife took our older daughter to the movies, and I took K out for Christmas shopping and dinner. While we were waiting for our food and talking, I saw two different people (one other diner and our waitress) look over at us and smile. Even those little gestures make me feel great.

NotAReal_Doctor4 karma

I have a good friend who has a brother with down. His parents very loving, and patient. Although, I have heard them comment on how raising their son, into his adult years and him likely never being in a home or on his own has changed their long term retirement plans or aspirations. Is this a factor for you and your wife, or will you just include your daughter in any future plans that you had?

DrUsual6 karma

Yeah, it's definitely a valid question, and something that we started thinking about from about, oh, six months old. I mentioned some of our actual planning activities and thoughts on the possibilities on some of the other questions, so in the reply to you, let me mention something that I haven't brought up elsewhere.

One completely unexpected result of thinking about the future was a severe blow to my own emotional health. I started to really dwell on how Down Syndrome was likely to change the plans my wife and I had had for ourselves, started feeling sorry for myself...then resentful...then selfish. I had a serious crisis night at one point when I felt like, "Even for just thinking about this topic, I must be the most selfish asshole in the world."

That was a real problem for me, and the fact that it had been gnawing at me was making me less effective as support for my family in general and my wife in particular, until I finally dealt with that issue personally.

khanweezy14 karma

How has it affected your family financially? Is most of her extra care covered by insurance? Is there any government help?

DrUsual3 karma

Good question...for starters, I'll point out that I'm in the U.S., and that our experience could vary wildly versus that of people in other countries.

I'd say that we've been fortunate. We'd have very little financial stress, mainly because we have excellent insurance. I work for an extremely large corporation and our medical coverage is definitely better than average for the U.S. Most of what we've needed that differs from the typical child has been covered by insurance.

We have had to pay out of pocket for some things that the typical family wouldn't -- we've had some co-pays for various ongoing therapies, and we easily met our deductibles when she had oral surgery. Also, though my wife and I already had wills, we had to have a trust drawn up for her, and that cost a couple thousand dollars.

All in all though, we've been very fortunate financially.

I've got a file cabinet full of "Explanation of Benefits" forms from our insurer, though, and it's easy to see that we'd have a lot harder time if it weren't for the good coverage. I suspect that many families with special needs kids don't get the speech and occupational therapy we do because their insurance won't cover it, and those services can be expensive. Likewise, I can't even imagine what heart surgery (we didn't have it, but it's not uncommon with children with Down) would cost for an uninsured family.

No, there's really not a lot in the way of government help. There are some awesome service organizations out there, mostly non-profits, though a few may be funded or run by state and local governments. Somewhat indirectly, there's certainly the government-sponsored medical care for people who can't afford other care; I don't know much about that, though.

One other note -- our financial advisor set up a fund (I believe it's a 529 fund, but don't quote me on that) that we're contributing to for K's higher education. This is important, too. It has the same tax benefits as the education funds for our older daughter, but if it turns out that K can't benefit from post-high school education, we can use this money for other stuff without a penalty. Definitely worth looking into to plan 15-18 years ahead...

AmyTheDestroyer4 karma

How has having her impacted how you view your own future?

DrUsual16 karma

It's certainly changed some things. Per Humgirl's question, I've had to change our financial planning very significantly, to prepare for the worst case scenario of my daughter never being able to contribute to her own support. We've also started talking about what we'll do if she becomes and adult but isn't able to live unassisted; we've started learning about group homes for people with disabilities, and started talking about what we would need to do to live comfortably with her staying with us indefinitely.

I've always felt that I wanted to live forever anyway, but she's certainly made me far more focused and committed to taking care of my own health. That's definitely a positive.

In the nearer term, it has some immediate impact on what kinds of things we can do. For example, potty training has taken far longer with K than with her big sister, and it sometimes affects our activities. For the most part, though, nothing too serious has been impacted by her DS -- we make it a point to not use DS as an excuse to not do things.

AquaZone4 karma

[deleted]

DrUsual7 karma

That's a great question. People should ask themselves this constantly, about any of their kids!

I started to answer this, then went back and deleted the whole thing. I was going to tell you I appreciate far more now the importance of patience, but I realized I was skipping the most significant thing--

I think the biggest thing I appreciate because of Down is how truly inconsequential some things are.

For the first couple years, I walked around with a feeling of "this has changed everything." And quite honestly, my attitude during some of that time was, "This just sucks."

The more I've grown, though, and the more I've seen her grow, the less DS matters. I guarantee you, it felt like the ONLY thing in our lives for some time, and it certainly felt like a huge problem. Over time, though, I've recognized that it's not that big of a thing, and for the most part, it's not even a problem.

It kinda gets back to something I've mentioned in other replies, that DS does not define my daughter, and that I wouldn't trade her for anything. At one point, DS felt like a crisis and a big deal, but at the end of the day, she's really the big deal, just like anyone else's kid. :)

Karissa363 karma

How do feel about plastic surgery to reduce or eliminate the facial features of Down Syndrome? I have heard that some parents do this when their kids are in their teens.

DrUsual5 karma

Ugh...I've not heard of this before in relation to Down Syndrome, but I don't doubt that it's true. It almost pulls me out of my "I won't tell someone else who to parent" philosophy. :) I'll just say this: no way in hell at my house.

Besides, my daughter's going through a phase where she likes to tell people, "I like your face." I can't imagine giving her the message that I don't like hers.

Derggy3 karma

Very nice AMA. My first born has Down Syndrome and he will be 27 in January. It's been in interesting road, with a few (huge) bumps along the way. We were the first to push for an inclusion program when he started elementary school, and we have been heavily involved in Special Olympics since he was about 10. Enjoy your journey - quite honestly it wasn't any rougher a road that with his two younger siblings.

DrUsual2 karma

Thanks, and thanks for posting this! This is exactly the kind of thing that I think more newer and new-ish dads need to hear. And I can't say enough good things about Special Olympics; that's an awesome program!

lookinfranswers3 karma

How is your social life ? Does your children gets invited to birthday parties, sleepovers, night-outs etc.,? How comfortable are you / her sister comfortable taking her in public ? (parks,grocery shopping,movies etc.,)

DrUsual2 karma

Yep, this is one of the great things about the integrated classrooms and going to a school that's part of our neighborhood. The kids in the neighborhood treat her like any other kid, and the parents have been great. She gets invited to other kids parties and social events, and we invite the typically developing kids to hers.

I admit that I was not as quick to take her out by myself as I was with my older daughter. That's entirely on me. You'll see from my other responses that I'm fully aware that emotionally, I didn't handle Down Syndrome well at the beginning.

Here's something ironic, in two parts:

The very first time that I took her out by myself, we went to do some shopping at Wal-Mart while my wife slept in. :) K was riding in the front of the basket. As we passed someone else, a kid of about six years old asked his mother why "that baby looked funny." In one of those sweet, southern drawling voices, mom said, "She can't help it, honey, she's a REtard."

Fast forward five years. We've been out together thousands of times since then, all different venues (including Wal-Mart) and not once have I heard anything similar again.

It's weird that it happened our very first time out, but I think it's statistically significant that it was the only time. :)

omgid3 karma

would you do it all again?

DrUsual7 karma

Yeah, I mentioned something similar to this in answering a different question -- I wouldn't "take her back" for anything. If you had a time machine and offered me the chance to change our history, nothing could convince me to "undo" her.

Does that mean that I don't wish at times that DS wasn't part of our lives? Not at all. I'd love for her to not have Down, not have many of the negatives that come with it. But that's a moot point, because it is a fact of our lives, and that fact is just one small part of her as a person. :)

scalpel6123 karma

I am the 21-year old sister of a 22-year old with Noonan syndrome. Just wanted to say that the special needs community supports you and your family! PM me if you or your 10-year old have any questions about being the sibling of a child with special needs.

DrUsual2 karma

Hey Scalpel, thanks very much for that! People are frequently complimentary to parents of special needs kids, but not nearly enough is said for the siblings. I think it would be a lot tougher to be a sibling; as a parent, you're expected to care for and nurture a child anyway, right? But when you're the brother or sister, the "role" is a lot less defined.

I just wrote down your username and I may very well ping you; I'd love to get your thoughts on siblings!

MissKPreK2 karma

Do you think she will be able to live independently as an adult or will you and your wife always be her caretakers?

DrUsual4 karma

I think it's too early to tell, but definitely on our minds. We're hoping she'll be able to live independently or semi-independently at some point, but we're trying to prepare for any of the possibilities. I suspect we'll have a better gauge on this as she gets into her early teens...

Rizzoriginal2 karma

How do you feel about the word retard and are you aware that the crusade to end its use has actually backfired, making it more used today than ever.

DrUsual6 karma

Oh, is this ever a powder keg topic. :) To give you an idea of how divided the Down community is about this, my wife and I have totally opposing opinions on it.

Here's my caveat: though I'll share my personal feeling on it below, I don't believe that derogatory use of "retard" is the most significant problem facing retarded people today. I'd rather see efforts to curtail the word be focused on more productive things.

Personally, I prefer that people not refer to others as "retarded" in a derogatory manner. I think that the unconscious equation ("retarded" = "lesser worth" = "butt of my joke") is unhealthy.

I'm also an author, and one of my editors once asked me to change some dialogue where a 14 year old boy called another boy, "gay." I said, "But that's how young kids talk." The editor said, "But we don't want to validate or encourage it." Fair enough -- I don't think that changing the word in my short story really had an impact, but I buy into the philosophy and I'm willing to support it.

Same thing years later with the "R" word. I think people should examine their language and understand the unconscious messages they're generating with their word choice. However, I don't think it's the crusade into which I want to ride; there are more productive places to put my time.

Ludwig_Beethoven2 karma

Do you use, or anticipate utilizing music therapy?

DrUsual5 karma

Yes! Definitely. Our speech therapist introduced us to a style of music therapy to help K learn to focus on tasks, and it's worked tremendously. I can't say enough about that, but I do want to mention something else your question reminded me of.

I've mentioned in a few other posts that I really struggled with my personal feelings on Down for the first couple years. One positive thing I did was to finally take piano lessons; until then I'd always been self-taught.

So, six months into taking piano lessons. I was practicing one night, really getting into a piece by Czerny, fast moving, really fun. Behind me, my older daughter, MD, shouted, "Look at K!" I turned around, and K was sitting in the middle of the piano room, bobbing up and down in that little first-baby-dance and giggling.

That was the first time I felt fully connected to her, where I thought that she was fully conscious of me.

One other informal music anecdote. I love music in general, and I'm a big Springsteen fan. On my MP3 player I've got a live version of The Boss doing "Santa Clause is Coming to Town." It's the only song my daughter asks for by name. She loves it; she doesn't care if it's August in Texas, she wants to hear Springsteen singing "Santa Clause is Coming to Town." This year she's started singing along with it, and whenever Clarence Clemens starts "ho-ho-hoing" in the background, K cracks up and tells me "Santa Claus is laughing!"

lily_tiger2 karma

How do your two daughters interact with each other? I'm especially interested in hearing about how your older daughter understands her sister's special needs.

Edit: typo

DrUsual6 karma

Similar question earlier, and I summarized that one by saying that my older daughter (MD) pretty much just sees K as her little sister, nothing different than anyone else's family situation.

I'll expand a bit on a related topic: I think it's extremely helpful that it's my younger daughter who has Down. By the time we had K, MD was already approaching an age where she could at least understand some basics about Down. Also, MD is a fantastic role model for K; there've been many instances where MD has been far more successful than my wife or I at teaching K to do something, simply because K wants to be just like her big sister.

Finally, I think it could be a bit challenging for a child with an older Down sibling to understand why he/she is "catching up" to Big Brother/Sister. I'm not sure on that one; just a gut feel since I'm not in that scenario myself.

PathToExile2 karma

I don't have a question but as a person that worked with children and adults with Down Syndrome congratulations on having a wonderful child that will always have a better view on the world than their "normal" counterparts. I was always envious of the happiness my clients displayed over even the smallest things, I miss working with them so much.

DrUsual3 karma

Thanks! And incidentally, one of the really positive things I've seen since being part of the Down community is the incredible bunch of people who work with special needs folks professionally. Many of the individuals and organizations who specialize in special needs are underfunded, underappreciated, and under-noticed. Yet, those folks tend to be some of the most dedicated to their work, and the impact they have on families like mine can be truly life changing.

darkingdoze2 karma

[deleted]

DrUsual3 karma

Great question here. With babysitters and with our educators we provide some information (talking beforehand and also a "cheat sheet" my wife wrote) to help them work with K. There isn't a lot that requires knowledge different from babysitting any other kid, since we don't have any significant medical issues.

However, it can be harder to get K to focus than other 6 year olds, and a babysitter might assume that a 6 year old will tell him/her when it's time to use the restroom. So, we usually prep the babysitter beforehand, advising that it never hurts to ask K periodically if she needs to use the bathroom, because if she gets engrossed in Sofia the First or Wild Kratts, an accident could occur...

Probably the most important thing for a babysitter to understand is that K might not have the acumen to protect herself in some ways, and thus, the babysitter needs to be aware of what she's doing. For example, my ten year old knows that she shouldn't touch the coffee maker because it could be hot without being visibly noticeable. K might not realize that, though, and if she's trying to get to something else on the counter, could be her hand on a hot coffee maker.

Stuff like that doesn't happen often, but it's good for a babysitter to understand that K won't necessarily have that quick analysis capability that other kids have.

DwarvenPirate2 karma

Do you find it hard to take care of your child, considering your disability?

What help are you given?

Is there governmental supervision?

DrUsual3 karma

Nope, to be honest, taking care of her isn't any different than taking care of any other child, fundamentally. Here are the two key differences:

  1. She learns more slowly in general, so anyone providing care needs to train him-/herself to not make assumptions. For instance, many people would assume that a six year old has learned not to play with the stove. Don't assume that with a six year old with Down.

  2. In some cases kids with Down can have physical symptoms that make some styles of play more dangerous. In particular, they can have a weakness of some high vertebra which makes it more dangerous for them to do gymnastics, wrestling, and some other sports. That's not the case with my daughter, but for kids who do have this or similar conditions, it's important to know what kinds of activities they shouldn't do.

BigBennyCumcum2 karma

As someone with no kids or special needs relatives or even friends, I admire you and your attitude towards it all. I you ever need a fiend or to vent, feel free to PM me.

DrUsual2 karma

Thanks very much, that's definitely appreciated. :) Letting someone vent is one of the best things people can do for a parent of a special needs child, especially guys.

I vaguely, vaguely remember an episode of "Life Goes On" from when I was a kid. The dad in the series was at a park at night, having a conversation with a friend. The dad says something about just wanting to scream sometimes. The friend says, "Why don't you?" Essentially encourages him to just get it out, right now...

Ellison222 karma

I have been moved by this AMA. my husband's aunt had DS and was an active member of the family which was very rare in the 50's. We now also have a brother in law who has DS. We had a baby this year and opted out of any additional testing as, like you, it would not have changed out opinion about the pregnancy. Our son was not born with DS, bit it is something we think about for future children given out family history. It is wonderful to hear so much honesty and positivity in regards to your daughter. She is lucky to have such wonderful parents. No question here, just praise for what you are doing. Thank you for letting us peer into your life. It has been insightful and heartwarming.

DrUsual3 karma

Thank you!

arlybigstick2 karma

I'm 23 years old and I see children in the future. Iv often joked about finding out that my unborn child has palsy or downs or is extremely deformed and said how I would have it aborted... I truly think that my reaction would be to do this which I know is very immoral. My question is this. If your wife would have stood by your decision. And the decision was yours. And you found out early of your daughters condition. Would you have considered abortion? And would you have followed through? Even now. Would you have rather just tried again? I guess what I am really getting at is, do you feel the same way about both of your children? Ps. I commend you and your wife and daughter on how amazing you all are in regards to over coming this obstacle.

DrUsual2 karma

You probably noticed in my earlier responses that I stayed away from this question to a great extent, but you asked it in a very hypothetical sense, so I'll answer it that way.

If we had found out early in the pregnancy, and my wife had placed the decision solely in my hands, would I have considered aborting?

I would have considered, yes. I wouldn't have opted for abortion, for two reasons.

The primary reason is that even if my wife told me it was my decision, I'm fully aware of her feelings on it. I was fully aware before I agreed to have a baby with her, so I feel like I was committed pre-conception.

Second reason is more personal - although I'm pro-choice, I'm not 100% convinced that I would have opted for "the choice." I'm pretty sure I would have leaned toward the abortion side, but I can't say absolutely that I would have opted for that. I don't really have a great explanation; it's just a gut feel thing.

And like I've said before, it's certainly a hypothetical, and moot. Asking 34 year old me whether I'd be willing to have a baby with Down Syndrome is a completely different thing from asking 41 year old me if I'd undo K's existence if I could...

ThickDiggerNick2 karma

When you see a down syndrome related memes how do you react?

DrUsual23 karma

When the purpose is to make fun of people with Down or get a laugh at their experience, I hate it, and I want to hit someone. Getting a laugh by making fun of someone who's relatively defenseless is lame and usually the MO of bullies who lack the sophistication for real humor.

Fizzdizz1 karma

Have you seen or heard the benefits of a iPad in the household for Down syndrome children and adults? I heard stories of Down syndrome child growing up not speaking, and when handed a iPad, learned how to use it very quickly. There is specially tailored apps that will actually helped them communicate in ways that were previously unknown.

DrUsual1 karma

Definitely, definitely, definitely. At my house we use the Kindle Fire and the Surface, but tablets in general are great tools for working with special needs kids, especially if you choose the apps carefully. Many of the Down Syndrome organizations keep lists of apps that are particularly well suited for some of our needs, and you see them come up frequently on the forums.

Incidentally, I've also found the Xbox Kinect to be an awesome tool for my daughter. Any of the games that require hand eye coordination, balancing, etc -- some of these things that come naturally to other kids require quite a bit of practice for a child with Down, and having the Kinect guide them through it (even though the games weren't meant specifically as therapy) helps a lot.

My favorite example is Kinectimals. At the physical therapist my daughter was working on pincer movements with her fingers. Comes home to play Kinectimals, and one of the activities in the game is to tickle your pet tiger and wash it with a brush. The Kinect can see that she's making those "scrunching" motions with her fingers and the tiger cub acts accordingly. Great, great stuff.

ItIsWhatItls1 karma

Is she more sensitive with her emotions? Does she understand discipline, sayy a time out when she misbehaves?

DrUsual8 karma

I don't think she's more sensitive, but I'd say she's less filtered. I think this tendency is what leads people to the myth that folks with Down are "always happy, always loving." I assure you, she has the same feelings as other people, positive and negative. Since all learning takes longer for someone with Down, I think many people with Down don't display cunning or scheming as readily as others, and maybe that's a plus.

She definitely understands discipline, though again, it can take longer for things to sink in, so discipline has to be basic and enforced. Time outs are effective, but the discipline must come very quickly after the cause. That can make discipline for school-related stuff challenging, and it's key to have a good partnership with the educators.

itroitnyah1 karma

What is your opinion of the Groningen Protocol?

DrUsual13 karma

I've never read about it until now, and frankly, I don't feel it applies to Down Syndrome. IMO, the idea that DS equates to "unbearable and hopeless suffering" is utterly ridiculous.

Beyond that, I don't have an opinion on this; I'm not interested in discussing the ethics or philosophy of Dutch medical law...

itroitnyah2 karma

Yes, I know. However, I sorta figured that since it talks about the disabled you would have an opinion whether it applied to your daughter or not. Thanks for the answer, though.

DrUsual1 karma

Definitely doesn't apply to my daughter. I have many reasons to believe that she's enjoying life now and can have a long, happy life. :)

scubasue6 karma

DS is not what that protocol was written for. As near as I can tell, people with DS can be just as happy as normals, and live reasonably pain-free. Groningen was written to protect suffering children from selfish parents' denial of death: OP's daughter is not suffering.

DrUsual3 karma

Exactly right!

BenMears51501 karma

I really admire you for doing this AMA, I'm 33 and my fiancée might be pregnant... As another post said, having a child with DS really scares the hell out of me.

I think the reason it scares me so much is that I worry I'm not a strong enough person and right now we live pay cheque to pay cheque. Having a financial advisor is something I could only dream of.

I dunno what I'm trying to say with this post except thanks and I wish you and your family all the best going forward in the future.

DrUsual3 karma

So, first, I'd say that I certainly hope you guys don't run into any kinds of challenges, Down Syndrome, Turner Syndrome, Marfan's Syndrome, anything other than Happy Baby Syndrome. :) And statistically speaking, you're unlikely to.

Second, I (and many other DS dads I've met) never would have considered myself the right guy to raise a special needs kid. It scared the hell out of me before it happened, did when it happened, and still does sometimes today. I think it's pretty rare that good parents of any sort just occur naturally. (Though a few of those have definitely posted on here, and they're cool to see!)

One other thing - I'm definitely a bit fortunate with my financial situation and benefits from work. I'm a long way from what I'd consider "rich," but we're stable, and that helps me be deal with being a special needs dad.

More importantly, I've seen plenty of other guys do splendidly for their special needs kids with a lot less resources than I have. There are probably plenty of things that I'm not aware of -- we've never needed financial assistance for medical stuff, so I've got almost no knowledge of what might be out there.

Like I said, your chances of having a DS or other special needs child is really, really low. Write down my username, though, and if it does happen, ping me -- one of the best resources you'll find is someone who's been there before.

TheFilthiestCorndog1 karma

Is it unusual to find this out after the baby is born? I had always assumed that this information could be determined through ultrasound or other standard pre-birth tests.

DrUsual2 karma

I don't have any scientific evidence to back this up, but my gut feel is that yes, it's fairly unusual nowadays. Pre-natal testing is far more common than it used to be, and far more accurate. I'd say that ours was an atypical case...

ITRAINEDYOURMONKEY1 karma

What kind of language do you find yourself using (and most comfortable with other people using) to describe your daughter and her condition?

We commonly call DS a birth defect or disorder but after the child is born, do you find yourself more sensitive to language that implies that the human being who is your daughter is defective or broken? I imagine it would be very draining to always be on the defensive about everyone around you using PC language, but is there certain terminology that you find particularly bad/good?

DrUsual2 karma

There was a similar question about the campaign to "end the R word," so I won't bring that one in...

Generally speaking, I'm not too sensitive about vocabulary. I do offer corrections sometimes (earlier in this AMA I mentioned to someone that Down Syndrome is not a "mental illness") but generally speaking, I'm more sensitive to the person's intent.

Good example: one of my co-workers refers derisively to people as "retards" or "retarded" all the time. Pretty much everyone in our sales department is retarded, according to him. I'm not fond of that, but I know he's not trying to belittle my daughter or other retarded people, so I just let it pass.

On the other hand, two years ago I was sitting with five of my co-workers at a bar, and a man walked by the window outside. He was trying to sell flowers to people walking into the hotel; a couple of us had walked past him earlier, and clearly he had some sort of diminished capacity.

One of my co-workers asked why he was out there selling flowers. Another quickly replied, "Because he's a re-TARD," then started grunting and slapping a crooked hand against his chest in the Living Color Handi-Man pose. Howling laughter from both of them.

I was furious, and I laid into them. That's sheer bullying, even if the victim isn't there to experience it directly, and I'm far more sensitive to that than to general language.

trodat4912-6 karma

So guess being a father a 4- has its downs.

DrUsual2 karma

Well, my 6 year old with Down has more compassion and better grammar than the average Internet troll, so I guess I've got that going for me!

NorrinRaddSilverSurf-9 karma

Do you consider it irresponsible to breed so late in life?

DrUsual2 karma

Only if the child I produced turns into an Internet troll.

satanismyhomeboy-14 karma

[deleted]

DrUsual10 karma

Yes, I didn't actually expect people to be this interested this quickly. Sorry. On the plus side, I got my grocery shopping done, and now I'm answering the questions.