Down Syndrome

[tequila 317]

10 hours ago, RedDirtTexan said:

We are in West Texas. Son's on the autism spectrum. Fairly severe. We spend a lot of our time thinking about his future. When will we have to pull him out of school and home school him due to bullying? What will he do when he's older? How will he change when he goes through puberty? When am I going to be able to retire so that I leave him a nice nest egg for the rest of his life? Most importantly, what will happen to him when his mother and I are gone? Maybe his sister will be around to care for him, but maybe not. Then what? 

God bless all of you and your families dealing with these issues. 

Would love to help out if we can.  We're in Midland, and would love to connect if you're willing. 

[tequila 317]

2 hours ago, Godzillatron said:

My daughter is about to turn 20, and is on the autism spectrum.  All of this, especially 3.  You are you kid's biggest advocate, don't expect others to do it. 

We're a few years away from having to make any huge decisions, but the good thing is that although my company is very small, we do have an office in Dallas, and if we need to move to a place with better care, I've been assured there will be no issues.  My wife is a native Midlander and her folks are here, but as we get a better feel for what we're dealing with from a spectrum perspective, relocation is definitely an option for us.  At this point, I'm fully on board with making sure our son has every opportunity to lead a productive and fulfilling life.  

[RedDirtTexan 209]

23 minutes ago, tequila said:

Would love to help out if we can.  We're in Midland, and would love to connect if you're willing. 

Just sent DM

[plvhorn 25]

I don’t have the exerience that most of y’all have, but my brother in law is 25 with Down syndrome. One of the best things for him is participating in special olymipics. He’s incredibly active in that which gives him tons of friends and exercise. Some communities have better organizations than others, so you have to research that. He was in Round Rock for awhile but now is in Allen. Both seemed to have great programs. 

It’s a blast going to his events and seeing all the support the kids receive and watching them play. 

[fuggled 576]

Why am I always singled out of the group and given a big hug?  Can they see my aura?

Ha ha, my wife says this too. She's worked a lot with special needs kids and adults over the years. There's just something people recognize in her and she's constantly getting waves and hugs out in public. I know she loves it though.

[tequila 317]

Thought I’d throw out an update for those who are interested:

Ben’s now a little over 19 months. He. Is. A. Bad. Ass.

He’s been attending a Mother’s Day Out program at a local church, and the ladies that manage the room love him. Unfortunately, he’s very susceptible to respiratory infections and has been through the RSV crap a few times. We’ve been pretty lucky so far with only one hospitalization over the last year. We’ve had to put him on oxygen at home at night probably 4 times over the last year (about a week on O2 for each instance). It’s a hell of a process, and usually involves duct tape so he can’t pull the nasal cannula out while he’s sleeping.



The main reason for the tape is to keep him from bending his arms so he can’t reach his face. Very thankful for the NICU nurse that gave us the pro tip.

The coolest thing is that Ben is now starting to sign a bunch. He’s got a few of them down pat, which is awesome. He’s also starting to talk a little bit. Last week I got in the car to go to lunch with my wife and Ben, who was in the back seat. I got in and totally got an excited “DADDA!” Unfortunately, my wife was chopping onions in the car for some damn reason...

Ben’s still doing physical therapy every week. He isn’t crawling or walking yet, but damn if the kid can’t butt scoot around with the best of them. He’s also doing a great job of feeding himself and is doing great with his cup and drinking.

So far we’ve continued to be very blessed with his health, with no significant health issues. I am continually amazed by the kindness of strangers we run into. Ben waves at just about everyone who makes eye contact, and it’s amazing how many people wave back and stop and coo at him.

So, still a lot to figure out in the long run, but things are going fantastically well, and I’m so proud of our little guy.




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[Chet Steadman 940]

Beautiful kiddo.  Good work Dadda.  

[bluto 4901]

He might be too big but my sister suits her kid up in a sleeping suit that looked like a turtle shell. It's like a thunder shirt/swaddle starfish type thing with arm/leg holes but they can't bend either. He's under a yr old though

[tequila 317]

He might be too big but my sister suits her kid up in a sleeping suit that looked like a turtle shell. It's like a thunder shirt/swaddle starfish type thing with arm/leg holes but they can't bend either. He's under a yr old though

He’s outgrown those, but they are highly recommended for anyone who has kids 9 months and under. Thanks!


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[Guest Lobo]

My half-sister (on my mom's side) has it.  I'd say she hovers between middle-functioning and high-functioning.  She's lost a bunch of weight over the last couple of years (I'm jealous).  She went from creeping into the serious pool of heart/organ/diabetes issues to now being kinda "okay."  Probably went from 280 to 180, maybe a hint less (haven't seen her in a year).  She was always pretty active for someone with D.S., but a few years back just hit a wall and didn't move all day and actually took it upon herself to make a change in diet and walk more.  I mean, my mother and other half-sister (and really my brother-in-law) helped her out a great deal but she makes her own meals and made the changes.  

She spent the first 5 years of her life in a shithole town and I think having access to a speech therapist could have helped her out a great deal, but it was the early 70's---the fuck did anyone know?  My mother was still smoking up until her water broke with me, didn't lose the ash off her Winston---so here we are.  Obviously I can understand her just fine, but yeah-it's not the smoothest delivery of language.  Verb conjugation is really what trips her up, the vocabulary is well above average for her condition.  What I love about her speech is she just doesn't misuse the word "Like."  I want to make grown adults I know listen to tapes of her speaking, and then shake them and say, "You used 'like' five times in in one goddamn sentence about your lunch, you fucking moron!"  She can read pretty well, still does basic arithmetic, kinda lost multiplication/division years ago with the advent of the pocket calculator.  She can pick up a Texas Monthly magazine and read it just fine, though obviously some words are lost on her.  Has no problem walking down the street to order herself some lunch and paying correctly, that kinda thing.  Has taken public transportation by herself several times.  Keeps in touch with high school friends, has a "boyfriend", still does older special olympics sports like bowling and softball.  Loves going to the movies, can do that all on her own (provided somebody picks her up at night).  Has a functioning smartphone that she exclusively controls (though my BIL pays the bill), I get texts, videos, emails from her.  She has a robust iTunes account I fund that she still meticulously fills on her own with all kinds of shitty country music (if you like modern country music, there's a good chance you have a slight case of Down's Syndrome).  And she goes to more concerts in a year than I do.  

My life lesson from her is to be there in the moment, a cliche lost on the hipsters and spoiled children that seem to surround me.  She loves nothing more than talking with her nephews and nieces, gathering around a restaurant table to join in and laugh with family and friends conversing about memories long faded, playing a card game with her own circle of friends, crying or laughing at a movie she's seen 20 times, or texting me some emojis to tell me how much weight she has lost this month (as if to rub it in a bit that I'm stuck on my Dec. 31st weight).  And the skeptics, the people that still probably throw the word "retarded" around defending it by saying, "Uh, it's a real word meaning to stunt growth of a project or somesuch." ...they'll say it's because her brain is simple and she isn't distracted by all the shit "we" are, so of course she can live in the moment.  But I think it's something different from that, I think she can enjoy life's little moments because those were supposed to be the big moments for all of us.  We don't see them that way because we went and filled ours up with a bunch of bullshit so we treat them as quaint and perfunctory.  I guess she cut through the bullshit.  I'm not naive...she's not wise...she's just efficient.  She'd love to trade places with any of us though, which is a shame because she doesn't know how worthless most of us are.  We have the tools to live life so much more fully and with greater eloquence and philanthropy and we're resigned to just slog along doing the bare fucking minimum, speaking with the verbosity of someone with...well, Down's Syndrome. 

But she's aces in my book, and later this year...she'll be turning 50.  So she's certainly turned expectations on their head way longer than any of us thought.  The more I get done in life, the more she reminds me that I am still her little brother.  I love it.

 

[El Diablo 4232]

We had a fishing event over the weekend for special needs people, it was pretty damned awesome. If you're within driving distance of Waco we've been doing the same event for the last 32 years. Checkout the 2019 fishing thread in hobbies area for details. Everybody should get the chance to catch a fish.

[blacklab 11890]

 

[tequila 317]

 

I saw that the other day. What a cool moment!!!

“I got this!”


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[tequila 317]

My life lesson from her is to be there in the moment, a cliche lost on the hipsters and spoiled children that seem to surround me.  She loves nothing more than talking with her nephews and nieces, gathering around a restaurant table to join in and laugh with family and friends conversing about memories long faded, playing a card game with her own circle of friends, crying or laughing at a movie she's seen 20 times, or texting me some emojis to tell me how much weight she has lost this month (as if to rub it in a bit that I'm stuck on my Dec. 31st weight).  And the skeptics, the people that still probably throw the word "retarded" around defending it by saying, "Uh, it's a real word meaning to stunt growth of a project or somesuch." ...they'll say it's because her brain is simple and she isn't distracted by all the shit "we" are, so of course she can live in the moment.  But I think it's something different from that, I think she can enjoy life's little moments because those were supposed to be the big moments for all of us.  We don't see them that way because we went and filled ours up with a bunch of bullshit so we treat them as quaint and perfunctory.  I guess she cut through the bullshit.  I'm not naive...she's not wise...she's just efficient.  She'd love to trade places with any of us though, which is a shame because she doesn't know how worthless most of us are.  We have the tools to live life so much more fully and with greater eloquence and philanthropy and we're resigned to just slog along doing the bare fucking minimum, speaking with the verbosity of someone with...well, Down's Syndrome. 
 

Thanks for the post. All of it, but especially this part. I think the greatest gift Ben has given us so far is that we truly appreciate all the little things he learns and the new skills he picks up; stuff we took for granted with the first three kiddos. Little man has figured out how to give kisses, and I will say there is literally nothing better right now than when he plants a big one on me.

This happened the other day: I had all the kids at home on a Saturday while my wife was out running some errands and getting out of the house by herself for a bit. I left Ben in his room to play and it got really quiet. I went to check on him and saw this:



His big brother had gone into the room and was reading him a book. Normally, big bro doesn’t have a lot to do with the little guy. I can’t tell you how proud I was at that moment of my kids.


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[tequila 317]

We had a fishing event over the weekend for special needs people, it was pretty damned awesome. If you're within driving distance of Waco we've been doing the same event for the last 32 years. Checkout the 2019 fishing thread in hobbies area for details. Everybody should get the chance to catch a fish.

Sounds like a great event! Thanks for your time and involvement!


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[Dertyberd 394]

Hey! Just saw this thread, not sure how I missed it.   My one and only daughter has DS and she's fucking awesome.  Beautiful, cool, very high functioning (she's a grade behind), and becoming a prima Dona like all 10 year old girls do.  It's been a rollercoaster of a decade, heart problems, Type 1 diabetes since she was two, almost died from a diabetic coma, constant therapy (physical and speech), loads of tutors, and the constant work with her from birth to keep her functioning at her highest level.  It's been a bitch of parenting, but it's the only thing I know.  I wonder sometimes how easy it must be to raise normal kids.  

Having her has been the biggest shake up to my world, but I'm glad it happened. Got a divorce in part because of the stress, but it's all worked out the best we could do.  I could go on, but just wanted to lay out my initial thoughts.  I'll come back and post more as shit comes up, it always does.  

Much love and big hugs to all of you out there.  Happy days.  

[jimmyjazz 45653]

21 hours ago, blacklab said:

 

Holy smokes, it's getting dusty in here.

Regarding Special Olympics:  ABSOLUTELY.  What a fantastic organization.  The middle-school girl I referenced on the last page made it to Nationals in gymnastics and ended up winning the gold medal.  Just an amazing achievement.

[Sleep off ugly 279]

2 hours ago, jimmyjazz said:

 

 

Edited February 5, 2019 by Sleep off ugly
Double

[Sleep off ugly 279]

Holy moly it’s dusty as hell. Lots of folks here have given good advice. I don’t have any personal experience with your situation so sorry I can’t really help. Maybe just remember the idea that the meek shall inherit the earth, and that love and kindness can cover a lot of our shortcomings.

Edited February 5, 2019 by Sleep off ugly
Also Ben rocks!

[tequila 317]

Well, it’s been a year and a half since I updated this thread. Ben turned 3 yesterday! He started walking in April and is tearing around, which is totally awesome!




He has been crushing his PT/OT/Speech and is really coming along.



He’s doing great with his communication, and is starting to talk in a big way, I think partly due to being home with us for the last 3 months and hanging with his big brothers and sister. Things are changing really quickly and he’s figuring out new things daily. We’re so proud of this little guy, and wouldn’t change a thing.



Happy to talk if anyone is going through something similar, just DM me.


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[SDG 3319]

Cheers man; thanks for the update.   

[Post Oak 20191]

34 minutes ago, tequila said:

Well, it’s been a year and a half since I updated this thread. Ben turned 3 yesterday! He started walking in April and is tearing around, which is totally awesome!




He has been crushing his PT/OT/Speech and is really coming along.



He’s doing great with his communication, and is starting to talk in a big way, I think partly due to being home with us for the last 3 months and hanging with his big brothers and sister. Things are changing really quickly and he’s figuring out new things daily. We’re so proud of this little guy, and wouldn’t change a thing.



Happy to talk if anyone is going through something similar, just DM me.


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Awesome news tequila.  He's a handsome bugger.

[Sgt Hulk 13699]

Bravo dude.  I volunteer a lot with special olympics in the last among other things.  The strongest families in the world. I often ask if I could ever do it.  The patience. The heart. The understanding the perseverance. It’s inspiring especially watching the athletes compete and how fun they have.  Tip of the cap sir   . 

[Guest Lobo]

I remember going to weekend Special Olympic meets with my sister, she took them very seriously.  And now that we take our 5 year old to soccer matches and dance "recitals", I think back to the families at my sister's meets.  Yeah, I get it...there's really nothing on the line...everybody gets a medal (But as I said, my sister took it really seriously), but everybody was so damn relaxed and having so much fun and swelling with pride as their children and siblings competed their asses off.  Not one frustrated parent yelling at their kid to hustle more. 

And I look at parents of these these little kids today and so many of them are fucking assholes.  Lecturing their kids on the next moves, visibly disappointed or upset with their kids, spending most of their time on their phones instead of in the moment, and in general---taking it was too fucking seriously.  They're five, they're not getting a scholarship to UT right now...relax and shut up.  I want my daughter to learn teamwork, being a good sport, and coordination...but everything else---who gives a shit?  My sister learned teamwork, being a good sport, and coordination and had an absolute fucking blast.  She made friends whom she still talks to today at age 50.  She even has a group of "senior" special olympics that gets together twice a week to go bowling.  And they are uber fucking competitive about it.  She texts me the scores/standings every week.  And I take the lessons and memories of her competing and making friends and having fun and I carry them with me to my own daughter's events. 

I never once saw a dad get worked up at a Special Olympics event because his daughter wasn't doing something correctly, why the fuck should it be any different for non-special olympics?  Every Kid is a Kid, no matter what.  But not every parent needs to be an asshole at their kid's events.  Happy Father's Day to all of you pops with special needs kids.  I think of my sister and my two daughters, and I mean this...I walk in your fucking shadow.  

[Texas_Rocks 346]

For years we’ve had multiple down syndrome individuals walking or biking around the neighborhood with family/caretakers. I believe that one incredible family has given a home to many of them. I do occasionally get the chance to interact with them for various reasons as they come by every day. It always tears at my heart when I notice that some of them just seem to disappear overnight. Had another one that lived right up the street with his 60+ year old brother for at least 15 years. The brother gets involved in something that results in himself getting killed by the police...leaving the DS guy all alone. Never saw him again. The whole deal really affected me. Not ashamed to admit that it brings a tear to my eyes at this moment.

[tequila 317]

We’re getting pretty close to Ben’s 5th birthday.  This kid continues to kick ass.  We’ve spent the last school year going to school every day, sometimes for a full day, but most frequently for a half day due to various therapies. This kid continues to slay me:

World Down Syndrome Day (3/21)

 

Can’t believe this kiddo is getting so big, and he’s so tough.  It’s amazing to see him start making friends at school and see other kids excited to be around him.  We’re truly grateful for our community and supporting friends and family.  As always, happy to answer any questions or help out if anyone is going through a similar situation.  

 

 

Edited May 15, 2022 by tequila

[ChiTownDoc 21113]

44 minutes ago, tequila said:

We’re getting pretty close to Ben’s 5th birthday.  This kid continues to kick ass.  We’ve spent the last school year going to school every day, sometimes for a full day, but most frequently for a half day due to various therapies. This kid continues to slay me:

World Down Syndrome Day (3/21)

 

Can’t believe this kiddo is getting so big, and he’s so tough.  It’s amazing to see him start making friends at school and see other kids excited to be around him.  We’re truly grateful for our community and supporting friends and family.  As always, happy to answer any questions or help out if anyone is going through a similar situation.  

 

 

Doing rehab with some group homes for Down Syndrome patients I can tell you in many ways you’re blessed.  Most stay innocent and sweet.  They make others smile and are what’s right about the world.  Unlike most ‘normal’ kids who turn into adults who, shall we say, have their shortcomings.  

[Armybrat 40767]

It is refreshing to see a happy and loved kid like Ben.