Down Syndrome

[tequila 317]

Not sure if this is the right board to post this on, but what the hell, I’ve been curious.

 

My wife and I had our fourth kiddo in June of last year. Our son has Down Syndrome. So far, we’ve been fortunate to avoid many of the significant health issues that kids with DS encounter; heart, respiratory, etc. Our little guy is a complete badass, and the happiest little man I’ve been around. Anyone else part of the 3/21 club?

 

 

Happy to answer any questions to the best of my ability as well.

 

 

Sent from my iPhone using Tapatalk

[tequila 317]

For the record, was a long time member of Shaggy, although very infrequent poster.


Sent from my iPhone using Tapatalk

[HornPhD 1365]

My Ph.D. is in special education and most of my work is focused on developing assessments to help improve postsecondary outcomes for individuals with significant cognitive disabilities. One of my Uncles, who is more like my brother, has Down Syndrome. My father was a professor of special education for over 30 years; and my grandparents were at the forefront of the movement to include kids with disabilities in the community. 

Are you connected with your local ARC community?

[pops 6976]

I honestly think downs kids were put here to teach us something. God bless you and your little boy. 

[Horn_Spanker 524]

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

[HornPhD 1365]

People with Down Syndrome definitely have obstacles to overcome; however, their limitations are often defined by others. 

 

[Quasimofo 406]

My granddaughter has Down Syndrome. She changed my life. There is not a mean bone in her body. Her mind just doesn't go there. She has a wonderful sense of humor. She can tease, and will giggle at the silliest things.
She has taught me more about life and love that I ever thought possible. Now, when I see someone in public with DS, I have a huge smile on my face.

We go to the State Fair on Texas/OU day every year, as I always go to the game. Some of you may have seen her there in her UT cheerleader outfit.

[Lobwedgephil 1139]

Don't know enough about it, but know it must be tough. Sounds like you are also extremely lucky. Have two babies a little older then yours, they are amazing and badass like your son.

[Chuychanga 133]

My girlfriend’s brother has DS, so I’m learning more about it. He is “low functioning”. He attended public school in Special Ed but he doesn’t communicate much.  He can say a few words that the family can understand but he can’t have a full conversation with you. He’s had a rough go physically lately. He’s 34, has had multiple strokes, but they are not always apparent due to his lack of communication skills. That has caused complications.  I have seen firsthand that he has a wonderful smile and that he is sweet and loving with his young niece and can be the brightest thing in the room with their family. The amount of work, sacrifice, and love that their family has put forth is awe-inspiring.  

[hobbs 243]

Buddy of mine has done some great things for the DS community, primarily in the Dallas area, most recently this: Daymark Living

[jimmyjazz 45662]

One of my daughter's best friends has a little sister with Down Syndrome.  Until our families became fairly close, I hadn't spent much time with DS kids.  I can say with 100% honesty that "Bean" is one of the most joyful, lovable kids I have ever met.  It is an absolute blast to hang out with her, chat, play, whatever.  I have never asked, but I would imagine she is fairly "high functioning", as she is very social, quite adept at conversation, takes a lot of regular classes in middle school, etc.  My life is better for knowing her.

[tequila 317]

11 hours ago, HornPhD said:

My Ph.D. is in special education and most of my work is focused on developing assessments to help improve postsecondary outcomes for individuals with significant cognitive disabilities. One of my Uncles, who is more like my brother, has Down Syndrome. My father was a professor of special education for over 30 years; and my grandparents were at the forefront of the movement to include kids with disabilities in the community. 

Are you connected with your local ARC community?

Not sure what ARC is.  We're in West Texas, so resources are a little different that they are in a major metropolitan area.  That being said, there are some pretty outstanding organizations that we've had access to to help with early intervention and occupational therapy.  We've been going to therapy basically since Ben was born to try to ensure that he has every opportunity to succeed.

[tequila 317]

11 hours ago, HornPhD said:

People with Down Syndrome definitely have obstacles to overcome; however, their limitations are often defined by others. 

 

Completely agree.  The biggest concern for me as a parent is how is our little dude going to be treated by the rest of the world as he grows up and becomes an adult.  I know he will always have unwaivering unconditional love at home, but the world is full of assholes (see: surlyhorns).

[eljinca 279]

My younger brother has DS. He's 31 now. Ask away.

[tequila 317]

2 hours ago, Chuychanga said:

My girlfriend’s brother has DS, so I’m learning more about it. He is “low functioning”. He attended public school in Special Ed but he doesn’t communicate much.  He can say a few words that the family can understand but he can’t have a full conversation with you. He’s had a rough go physically lately. He’s 34, has had multiple strokes, but they are not always apparent due to his lack of communication skills. That has caused complications.  I have seen firsthand that he has a wonderful smile and that he is sweet and loving with his young niece and can be the brightest thing in the room with their family. The amount of work, sacrifice, and love that their family has put forth is awe-inspiring.  

The weirdest part of this is not really having any idea where Ben's going to fall on the spectrum.  From everything I've seen so far, I expect he's going to be relatively high functioning, but we won't really have an idea for a few years.

[Brothahorn 10087]

My sister has DS. While she has health problems now(due to two strokes and her diet), at one time she was working and living a fairly independent life.

She's super friendly and will hug just about anyone.

She's 35, btw. We were told that she probably wouldn't make it to 30.

[tequila 317]

2 minutes ago, eljinca said:

My younger brother has DS. He's 31 now. Ask away.

How hard was it growing up with a sibling with DS?  I'm very grateful that my son is going to have three older siblings to look out for him over the course of his life.  I think he's going to teach the other kids about a lot of other things that they wouldn't have the same exposure to in other circumstances.  

[tequila 317]

And BTW, thanks for all the replies.  

[eljinca 279]

1 minute ago, tequila said:

Completely agree.  The biggest concern for me as a parent is how is our little dude going to be treated by the rest of the world as he grows up and becomes an adult.  I know he will always have unwaivering unconditional love at home, but the world is full of assholes (see: surlyhorns).

It's always something I worried about. We lived and grew up in fairly affluent upper-middle class areas and had almost no problems. My brother was in fully normal, integrated public school classes until he was 14, when he clearly couldn't keep up with the work. I think it's incredibly important for anyone with a developmental disorder to be around other kids their own age without any challenges.

The only issues we ever encountered were a few kids continuously stole his gym clothes from his locker in middle school since he didn't know how to use a lock. Never did this in front of him. Wound up just keeping his clothes in the teacher's office after the third time.

 

[eljinca 279]

11 minutes ago, tequila said:

How hard was it growing up with a sibling with DS?  I'm very grateful that my son is going to have three older siblings to look out for him over the course of his life.  I think he's going to teach the other kids about a lot of other things that they wouldn't have the same exposure to in other circumstances.  

My brother and I were always incredibly close. I'm 2.5 years older and I never had any thoughts about it, to be honest. I was always very much watching out for him and making sure no one said anything or did anything to him. Luckily only had one unpleasant episode. Frankly, I felt as far back as I can remember, that if someone made anything difficult, fuck them.

I think the thing for you and his siblings is to accept him for what he is and what he likes, not what you would hope him to be. Many times I've argued with my mom that she forces him to do activities that she wants him to do, as opposed to his interests (going to prom, for example, wasn't something he knew existed until my mom decided he was going.) He is incredibly happy being around family, going out to eat, having ice cream and watching about 10 disney movies that he loves.

It also depends on behavioral and health issues. My brother has been very lucky, without any major health issue. Communication is challenging, and has been forever. He didn't speak until he was 5, and learned sign language prior to that. Some of the other kids I've known in his cohort would have been very challenging for parents and siblings.

Edited March 30, 2018 by eljinca

[Armybrat 40768]

One of my sons SIL has DS - she's about 45.& loves to joke around. She has more common sense than her schoolteacher mother.

[eljinca 279]

16 minutes ago, tequila said:

How hard was it growing up with a sibling with DS?  I'm very grateful that my son is going to have three older siblings to look out for him over the course of his life.  I think he's going to teach the other kids about a lot of other things that they wouldn't have the same exposure to in other circumstances.  

I'd also add that your second point is correct. It definitely teaches you patience and empathy very early on in life - which I think is a good thing.

[Brothahorn 10087]

We're 9 years apart, so at times it was tough for me. I wasn't the baby anymore and she was getting all the attention(for good reason). I was a kid though, so I didn't understand. Like the time she tried to light the heater and almost set the bathroom on fire. Of course I wanted her to be punished like me.

By the time I got to JH/HS, I understood her condition better. But teens are assholes, especially in small towns, I had a few fights over kids teasing her and even me.

[HornPhD 1365]

24 minutes ago, tequila said:

Not sure what ARC is.  We're in West Texas, so resources are a little different that they are in a major metropolitan area.  That being said, there are some pretty outstanding organizations that we've had access to to help with early intervention and occupational therapy.  We've been going to therapy basically since Ben was born to try to ensure that he has every opportunity to succeed.

The ARC is a community-based national organization for individuals with intellectual disabilities and their families.

Here is the list of all the chapters in TX:

https://www.thearc.org/Page.aspx?&pid=332

Check out the Council for Exceptional Children. A lot of their information is for educators; however, they have have resources for families, as well.

Sounds like you have some great support. Early intervention and high expectations are essential. As he gets older, there will be people who will say your son can't do something without even giving him the opportunity. 

 

[Armybrat 40768]

14 minutes ago, Brothahorn said:

By the time I got to JH/HS, I understood her condition better. But teens are assholes, especially in small towns, I had a few fights over kids teasing her and even me.

They certainly can be assholes. Unfortunately my oldest grandson (a CP kid) didn't have a brother to fight for him when he was bullied from middle school into his freshman year in high school.

Luckily he has gotten past that at age 25 - at least on the surface.

[Rip76 4919]

35 minutes ago, eljinca said:

It's always something I worried about. We lived and grew up in fairly affluent upper-middle class areas and had almost no problems. My brother was in fully normal, integrated public school classes until he was 14, when he clearly couldn't keep up with the work. I think it's incredibly important for anyone with a developmental disorder to be around other kids their own age without any challenges.

The only issues we ever encountered were a few kids continuously stole his gym clothes from his locker in middle school since he didn't know how to use a lock. Never did this in front of him. Wound up just keeping his clothes in the teacher's office after the third time.

 

Same here.

Although my son does not have DS, he does have Autism and I worry daily about when he gets a little older.

 

Great thread btw.

[RedDirtTexan 209]

41 minutes ago, Rip76 said:

Same here.

Although my son does not have DS, he does have Autism and I worry daily about when he gets a little older.

 

Great thread btw.

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. 

[Rip76 4919]

1 minute 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. 

All of this.

I will say one thing. (Alex is in 4th grade right now)  I think that more and more kids (there are still shitheads), are understanding a little bit more about kids that are "different," than them.  And I believe that this may be because more and more of their own family members are on the spectrum, DS, etc.

[Rip76 4919]

Another thing is milestones for any special needs child.

Alex wasn't very verbal until about 2 years ago.  (Still not all that crazy for conversation )  But as he got a bit older, better teachers, more speech therapy he started hitting this milestones that I would have never believed would've been possible.

About about 4 months ago, I said "I love you Alex," and he said, "I love you too."    What the hell?  I was floored.

Another one.  I don't remember a time in my life when I was not surrounded by music.  Alex never really "got into" music.   Well what do you know, he's starting to like it now, and experimenting with different bands.  His current favorite album right now is......

[eljinca 279]

13 minutes 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. 

A couple of things:

1) Puberty can be bad, especially for girls. Most of the terrible  stories I've heard from parents of my brothers peers were with teenage girls who didn't understand why they couldn't date or why they were different from other girls.

2) If possible, find a local community that has good services for adults with intellectual disabilities. Resources are typically allocated at the county-level, and counties can differ wildly in things like case-managers, group homes, etc. My family chose one county over another due to this and has remained there for 20 years.

3) Get involved in local government and schools. My mom was at my brother's middle school so much complaining about the lack of job training they were offering that they hired her to do it herself for the special ed department. There are county boards for adults with intellectual disabilities. The more involved you are, the more you can affect change - and things can actually change locally. Support local legislators that are allies.

4) Start early with estate planning and legals. This can be expensive, and obviously depends on means. My family spent considerable amounts of money on family planning lawyers before my brother turned 18 so that everything was in place with guardianship and making sure my brother has everything in place should some disaster befall both of my parents or his siblings. We actually had to have doctors testify that he does, in fact, have DS. Lawyers for the county had to come, assess if there was any abuse taking place and ask him where he wanted to live when he turned 18. They told him that there were other options than living with his parents (he had no clue what the woman was talking about and asked to go back to watching a movie). It's all very trying, expensive, but absolutely needs to be done if you are in the position to do it.

[jimmyjazz 45662]

I know a lot of people might disagree with this post, but in my defense I've had the privilege of raising or helping to raise 5 kids age 26 down to 3.  I'm not so old I don't remember my youth, either.

I firmly believe kids are becoming more accepting and more including of those who are "different" than them.  Sure, this is mostly related to race and sexuality, but it also extends to kids on the autism spectrum as well as Down Syndrome kids, etc.  I don't know about CP, not sure I've witnessed that.

My (current) teenagers went to elementary school with a kid who was autistic.  He struggled to some degree, but I'm telling you, everybody knew him and for the most part helped him.  I was not aware of any bullying.  They were outwardly supportive of him when he did things like acting in school productions, etc.  He recited a beautiful poem that he wrote at the talent show and the place went fucking nuts.  

I have hope for our future.  Kids are better nowadays.

Edited March 30, 2018 by jimmyjazz

[eljinca 279]

14 hours ago, tequila said:

 

Not sure if this is the right board to post this on, but what the hell, I’ve been curious.

 

My wife and I had our fourth kiddo in June of last year. Our son has Down Syndrome. So far, we’ve been fortunate to avoid many of the significant health issues that kids with DS encounter; heart, respiratory, etc. Our little guy is a complete badass, and the happiest little man I’ve been around. Anyone else part of the 3/21 club?

 

 

Happy to answer any questions to the best of my ability as well.

 

 

Sent from my iPhone using Tapatalk

 

Also, Tequila, if you can find them, watch:

https://en.wikipedia.org/wiki/Educating_Peter

https://en.wikipedia.org/wiki/Graduating_Peter

They may be a little outdated now, and were more in my brother's generation, but chronicle a family raising a young boy w DS from elementary school through high school graduation.

[PatrickMcHorn 376]

How hard was it growing up with a sibling with DS?  I'm very grateful that my son is going to have three older siblings to look out for him over the course of his life.  I think he's going to teach the other kids about a lot of other things that they wouldn't have the same exposure to in other circumstances.  

Whay age are your other kids?

[Rip76 4919]

3 minutes ago, jimmyjazz said:

My (current) teenagers went to elementary school with a kid who was autistic.  He struggled to some degree, but I'm telling you, everybody knew him and for the most part helped him.  I was not aware of any bullying.  They were outwardly supportive of him when he did things like acting in school productions, etc. 

This is exactly Alex's situation right now.

[PatrickMcHorn 376]

I know a lot of people might disagree with this post, but in my defense I've had the privilege of raising or helping to raise 5 kids age 26 down to 3.  I'm not so old I don't remember my youth, either.
I firmly believe kids are becoming more accepting and more including of those who are "different" than them.  Sure, this is mostly related to race and sexuality, but it also extends to kids on the autism spectrum as well as Down Syndrome kids, etc.  I don't know about CP, not sure I've witnessed that.
My (current) teenagers went to elementary school with a kid who was autistic.  He struggled to some degree, but I'm telling you, everybody knew him and for the most part helped him.  I was not aware of any bullying.  They were outwardly supportive of him when he did things like acting in school productions, etc.  He recited a beautiful poem that he wrote at the talent show and the place went fucking nuts.  
I have hope for our future.  Kids are better nowadays.

I would agree, however, as a parent I wouldn't be concerned about elementary school, I'd wonder what it would be like in middle school. In my experience, that's when kids start becoming assholes.

[tequila 317]

1 hour ago, PatrickMcHorn said:

3 hours ago, tequila said:

How hard was it growing up with a sibling with DS?  I'm very grateful that my son is going to have three older siblings to look out for him over the course of his life.  I think he's going to teach the other kids about a lot of other things that they wouldn't have the same exposure to in other circumstances.  

Whay age are your other kids?

6, 5, and 3.  We're nuts.  

[PatrickMcHorn 376]

6, 5, and 3.  We're nuts.  

Nah, I was thinking it would help the closest in age they all are.

[tequila 317]

1 hour ago, eljinca said:

A couple of things:

1) Puberty can be bad, especially for girls. Most of the terrible  stories I've heard from parents of my brothers peers were with teenage girls who didn't understand why they couldn't date or why they were different from other girls.

2) If possible, find a local community that has good services for adults with intellectual disabilities. Resources are typically allocated at the county-level, and counties can differ wildly in things like case-managers, group homes, etc. My family chose one county over another due to this and has remained there for 20 years.

3) Get involved in local government and schools. My mom was at my brother's middle school so much complaining about the lack of job training they were offering that they hired her to do it herself for the special ed department. There are county boards for adults with intellectual disabilities. The more involved you are, the more you can affect change - and things can actually change locally. Support local legislators that are allies.

4) Start early with estate planning and legals. This can be expensive, and obviously depends on means. My family spent considerable amounts of money on family planning lawyers before my brother turned 18 so that everything was in place with guardianship and making sure my brother has everything in place should some disaster befall both of my parents or his siblings. We actually had to have doctors testify that he does, in fact, have DS. Lawyers for the county had to come, assess if there was any abuse taking place and ask him where he wanted to live when he turned 18. They told him that there were other options than living with his parents (he had no clue what the woman was talking about and asked to go back to watching a movie). It's all very trying, expensive, but absolutely needs to be done if you are in the position to do it.

Thanks for the insight.  We've got two very close friends that have children with DS, and one of the fathers practices family law.  They've been a tremendous resource.  At this point, there's not a whole lot of difference between Ben and the other kids, he's still just a baby.  But I know the differences are coming and it's nice to have a few folks to be able to bounce questions off of.  

[tequila 317]

This smile makes everything a lot easier.


Sent from my iPhone using Tapatalk

[tequila 317]

3 hours ago, eljinca said:

I think the thing for you and his siblings is to accept him for what he is and what he likes, not what you would hope him to be. Many times I've argued with my mom that she forces him to do activities that she wants him to do, as opposed to his interests (going to prom, for example, wasn't something he knew existed until my mom decided he was going.) He is incredibly happy being around family, going out to eat, having ice cream and watching about 10 disney movies that he loves.

Great post.  My friend that has a 5 year old son with DS has said very similar things about his kid.  

[jimmyjazz 45662]

2 hours ago, PatrickMcHorn said:

2 hours ago, jimmyjazz said:

I would agree, however, as a parent I wouldn't be concerned about elementary school, I'd wonder what it would be like in middle school. In my experience, that's when kids start becoming assholes.

I have seen it flow through middle school to high school.  My daughter's crowd is a broad mix of white, black, Hispanic and Asian kids with all kinds of gay, straight, and bi sexualities.  I'm not seeing the bullying.  At all.  

OK, I'm seeing a shit ton of typical drama, but it seems to cut across demo lines.

[PatrickMcHorn 376]

I have seen it flow through middle school to high school.  My daughter's crowd is a broad mix of white, black, Hispanic and Asian kids with all kinds of gay, straight, and bi sexualities.  I'm not seeing the bullying.  At all.  
OK, I'm seeing a shit ton of typical drama, but it seems to cut across demo lines.

Good to know. I went to a really shitty middle school (Burnet). Still seeking a frame of reference for what I'm in for.

[Brisketexan 104800]

God bless you and your family, man.

I don't have nearly the first-hand experience of some of the (really good) assholes around here, who seem to be giving you some solid thoughts.  My biggest dose of experience was working as a camp counselor at a summer camp for developmentally disabled kids one summer nearly 30 years ago.

They were generally the happiest, kindest people I've been around my entire life.  I had particular responsibility for a girl named Rita -- she was older, probably late 20s.  She didn't have DS, but was developmentally disabled and behaved similarly to the DS kids around us.  That week, it rained a lot, and the kids didn't all have rain gear, so we had them take their towels with them when we walked -- they could put it over them as a rain cover, dry off with it, etc.  One afternoon, we walked to the campus theater to see some sort of play.  I was so damned tired (had to be up at 6:00, and we were usually up till midnight).  I sat down in my chair next to Rita, and as soon as the lights went down, I tried to curl up and sleep.  I was shivering a bit (it had rained on me some on the walk over).  As I lay there, shivering, trying to sleep, I felt a towel being draped over me.  I cracked my eye open, and Rita was covering me with her towel to keep me warm.

To this day, it's one of the kindest things anyone has ever done for me.

When her dad came to pick her up at the end of the week, I told him a very abbreviated version of that event.  He was a big old Texas boy, clearly working class.  His eyes welled up, and he squeezed his daughter's hand, looked at her, and said "yeah, she's my special girl."

Love your boy, man - like I know you will.  He's a prize.  And I'm wishing you strength on your walk, when there are hard days, because there will surely be some.

[Hank Scorpio 17724]

1 hour ago, jimmyjazz said:

My daughter's crowd is a broad mix of white, black, Hispanic and Asian kids with all kinds of gay, straight, and bi sexualities.  

No handicapped kids? What a bunch of ableist assholes. 

[ChiTownDoc 21113]

I deal with many older Down’s patients who live in group homes.  They have many of the same issues the rest of us do as they age.  

After a hip fracture or any illness/setback, I can say they’re often more excited to work harder and get back to their group homes vs your typical senior.  

If anyone’s wondering how they age, psychologically, I can say pretty well.  

Nobody’s better at bringing a smile to your face.  

[Judge Roybeanbag 11811]

Csb, when I was about 9 or so, in 1975, my grandparents had a family they were friendly with over for dinner.  They had a son probably 2 years older than me that had downs.   I had to sit next to him at dinner and it freaked me out at first, because kids don’t have a concept or didn’t then as to what it was all about.  I mean I was honestly scared I’d get infected with retardedness or something.  By the end of the evening though, I had learned that even though the guy was overly loud and demonstrative,  he had a heck of a sense of humor and we enjoyed the same shit all kids that age enjoy.  Changed a lot of my viewpoint or lack of on what some call disabilities.  I don’t know whatever happened to that guy because I haven’t seen him since, but I’m glad he opened my eyes to the fact that people are what they are, and different isn’t scary.   

Good luck with your son, tequila.  

[Sandman 3403]

3 hours ago, tequila said:

This smile makes everything a lot easier.


Sent from my iPhone using Tapatalk

This looks like the happiest kid on earth and it made me smile just to look at him. You're a lucky guy!

[Newdoc 3437]

Be vigilant, some Trisomy 21 issues can arise later in life. Make sure your doctor has a good plan on what to screen for. There actually is a bit of controversy in the medical community on what to screen. Some things are obvious however.

Kids with Down's have the full spectrum of personalities like everyone else but are overall happy and joyful. A true pleasure to take care of them and their families. A true heartache when medical things get complicated and you watch them suffer.  You will definitely get more love than you give.  Don't be afraid to ask for help and get some time out for the parents. It is an exhausting call for parents of kids with down's. Those parents and siblings as much as the affected child are often an inspiration.

[Godzillatron 292]

7 hours ago, eljinca said:

A couple of things:

1) Puberty can be bad, especially for girls. Most of the terrible  stories I've heard from parents of my brothers peers were with teenage girls who didn't understand why they couldn't date or why they were different from other girls.

2) If possible, find a local community that has good services for adults with intellectual disabilities. Resources are typically allocated at the county-level, and counties can differ wildly in things like case-managers, group homes, etc. My family chose one county over another due to this and has remained there for 20 years.

3) Get involved in local government and schools. My mom was at my brother's middle school so much complaining about the lack of job training they were offering that they hired her to do it herself for the special ed department. There are county boards for adults with intellectual disabilities. The more involved you are, the more you can affect change - and things can actually change locally. Support local legislators that are allies.

4) Start early with estate planning and legals. This can be expensive, and obviously depends on means. My family spent considerable amounts of money on family planning lawyers before my brother turned 18 so that everything was in place with guardianship and making sure my brother has everything in place should some disaster befall both of my parents or his siblings. We actually had to have doctors testify that he does, in fact, have DS. Lawyers for the county had to come, assess if there was any abuse taking place and ask him where he wanted to live when he turned 18. They told him that there were other options than living with his parents (he had no clue what the woman was talking about and asked to go back to watching a movie). It's all very trying, expensive, but absolutely needs to be done if you are in the position to do it.

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. 

[tequila 317]

4 hours ago, Newdoc said:

Be vigilant, some Trisomy 21 issues can arise later in life. Make sure your doctor has a good plan on what to screen for. There actually is a bit of controversy in the medical community on what to screen. Some things are obvious however.

Kids with Down's have the full spectrum of personalities like everyone else but are overall happy and joyful. A true pleasure to take care of them and their families. A true heartache when medical things get complicated and you watch them suffer.  You will definitely get more love than you give.  Don't be afraid to ask for help and get some time out for the parents. It is an exhausting call for parents of kids with down's. Those parents and siblings as much as the affected child are often an inspiration.

I'm assuming you're referring to the higher probability of leukemia and cancer in kids with DS.  Anything else specifically we should worry about or screen for?  Still very early in this journey, and really appreciate the response.  

 

I'm truly blessed to have an amazing wife, and we have a great relationship.  So far, we've been able to handle all of the mental strain and stress without too much of a disruption to our daily lives.  I know that all of that can change any time we visit the doc (referring to the above), but we're in a good place right now.