My son and Down Syndrome

CleBrownsfan · 05-09-2013, 10:31 AM

I posted the exiting birth story of my son Henry a little over a month and wanted to share with you the news we received a few days after he was born. Henry is diagnosed with Down's syndrome, also known as trisomy 21. The doctors had suspicions after seeing some common physical traits of DS. One was his webbed toes, and the other were his ears (they were small and lower than "normal"). They took blood samples to run a chromosome test and told us it could take 5-10 days for the results. After four days the results came in - and it was confirmed, Henry has three of the chromosome 21.

I'm the first one to say that I am not very good at describing my feeling in writing. I can't even describe to you all the feelings I had leading up to the conformation because my emotions were so up and down. All I know, I had to be there for my wife. She was a wreck! Being strong for her helped me through the grieving stages.

Fast-forward to today... after a few weeks of the grieving, shock, and about 1,000,000 different emotions - we have a completely different aspect to having a child with special needs. You see, I (we) have never been around anyone who has special needs. The more we read, watch, and listen to other people talk about their lives with special needs, the more I feel blessed we have Henry in our life. I wouldn't change who he is for anything. I am very grateful for our family and friends - they have been so supportive. I know it seems obvious - but it's amazing how much support has helped and will continue to help.

Thank you for reading - I'm sure I'll be updating the post many times throughout the years

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Logan · 05-09-2013, 10:34 AM

Beautiful boy!

Eaglesfan27 · 05-09-2013, 10:42 AM

He is very cute. Congratulations on the birth of your son and my best wishes for many many years of happiness.

Mizzou B-ball fan · 05-09-2013, 10:43 AM

I dated a girl for three years in high school who had a brother with cerebral palsy. While obviously not the same diagnosis here, those three years around him taught me a lot about how much you can learn from special needs kids. They'll make you a better person and teach you a lot about how to enjoy life. Not always easy, but very rewarding.

finketr · 05-09-2013, 11:46 AM

cute kid! digging the trees onesie.

albionmoonlight · 05-09-2013, 12:05 PM

Congratulations. And, like EF27 said, best wishes for many great years together.

DaddyTorgo · 05-09-2013, 12:36 PM

Quote:

Originally Posted by Mizzou B-ball fan

I dated a girl for three years in high school who had a brother with cerebral palsy. While obviously not the same diagnosis here, those three years around him taught me a lot about how much you can learn from special needs kids. They'll make you a better person and teach you a lot about how to enjoy life. Not always easy, but very rewarding.

This.

He's blessed to be with you and your wife CleBrownsfan.

Danny · 05-09-2013, 12:49 PM

Having a child with special needs is sort of like ordering a hot fudge sundae and getting a cheesecake instead (or replace two other desserts you really like). It may not be what you expect, but what once you start eating it, it is wonderful and brings joy to your life

.

CleBrownsfan · 05-09-2013, 12:57 PM

Quote:

Originally Posted by Danny

Having a child with special needs is sort of like ordering a hot fudge sundae and getting a cheesecake instead (or replace two other desserts you really like). It may not be what you expect, but what once you start eating it, it is wonderful and brings joy to your life

.

I love the analogy

Reminds me of this amazing piece someone wrote about the experience of raising a child with a disability:

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

PackerFanatic · 05-09-2013, 01:18 PM

He is adorable and you definitely should feel blessed to have him

Best of luck to you and your family in the future!

PurdueBrad · 05-09-2013, 01:38 PM

What a terrific looking young man (even for a future Browns fan). Best of luck to you as you move forward and this is a community that will be here to celebrate the successes and help you through any stumbles.

Mizzou B-ball fan · 05-09-2013, 01:54 PM

I should add on a funny experience over the weekend. We were at a wine and food festival doing tastings of our wine. A guy around 30 years of age with Down Syndrome came over with one of his relatives to do a tasting. I kid you not, this guy knew more about wine than 75% of the people I served that day. Talked with him for 15 minutes about wines, food, etc. Really impressed and it was obvious how big of an impact his family had on his development and how much they allow him to be his own person.

DaddyTorgo · 05-09-2013, 02:15 PM

Quote:

Originally Posted by Mizzou B-ball fan

I should add on a funny experience over the weekend. We were at a wine and food festival doing tastings of our wine. A guy around 30 years of age with Down Syndrome came over with one of his relatives to do a tasting. I kid you not, this guy knew more about wine than 75% of the people I served that day. Talked with him for 15 minutes about wines, food, etc. Really impressed and it was obvious how big of an impact his family had on his development and how much they allow him to be his own person.

Lathum · 05-09-2013, 02:48 PM

cute kid!

RomaGoth · 05-09-2013, 03:20 PM

Wow, cute kid! You are blessed.

Subby · 05-09-2013, 03:48 PM

My 12 year-old has Down syndrome. Anything you need to know or want to talk about, pm me. Anytime.

Your son is beautiful.

Swaggs · 05-09-2013, 04:21 PM

Congrats (may have missed the announcement)!

I have read the Italy/Holland piece before and think it is great.

BigDPW · 05-09-2013, 04:33 PM

He is adorable and will bring you lots of joy.

Dodgerchick · 05-09-2013, 04:56 PM

Awwww, he's adorable! I'm very much looking forward to updates.

Desnudo · 05-09-2013, 07:38 PM

He's a sweet looking boy. Good luck.

law90026 · 05-09-2013, 08:28 PM

Congrats and all the best! Our elder one has some special needs as well so it will be tough but we wouldn't change anything

MizzouRah · 05-09-2013, 09:27 PM

Quote:

Originally Posted by DaddyTorgo

He's blessed to be with you and your wife CleBrownsfan.

He is indeed!

BYU 14 · 05-09-2013, 10:17 PM

He is absolutely adorable and blessed to have you as parents, as you are to have him as your child.

Wishing you many, many years of happiness!

Icy · 05-10-2013, 05:08 AM

It's totally understandable that you went through 1,000,000 different feelings at first, but your final thought is the right way to see it, and shows you will be the perfect parents for him, big congrats for realizing it!

One of my best friends, who is also the bassist of my rock band, is a psychologist that specialized in Down syndrome kids. He started a non profit organization 15 years ago to help them and the parents to integrate in the society and specially forming and helping them to find a job. He is doing a damn fine job, the kids and the parents love him because his not standard approach to their problems and integration, giving them way more freedom than what most of us ignorant people would think they could assume.

I remember the first time he took a group of the kids (teens and older) in a bus and brought them to one of our live rock shows. Our initial (and ignorant) reaction was to feel weird about it and sorry about them, and to talk to them like if they younger or dumb or like if we could offend them with any comment we made.

On the other hand, he talked to them like you do to any other teen, even making jokes with them about their limitations and they also made fun of him like any other teen do to their buddies. You should have seen their faces, they were so happy of being in a rock live show with hundreds of other teens, totally integrated with other people of the same age group. Since then, he repeated the experience a lot of times and it was great for the kids, their parents and for the rest of us that learned how special they are and how ignorant and full of prejudices most of us are about the down syndrome.

He gave us a big lesson, It opened our eyes a lot, and changed the way we see down syndrome kids. They ARE special, they KNOW it, and they ACCEPT it, for the good and the bad, and it's stupid to feel sorry about them or to feel weird, and specially to show that to them. It is the first step to have them integrated in the society and to feel like any other person without that problem, with the good and bad situations every person has to deal with daily.

That is the first thing he teaches to down syndrome parents, to not to feel sorry, sad and to hide or to over protect them that could be the first reaction, but to teach them to know their limitations and to get over them and to enjoy that process, that while probably harder than for any other parent, it's always way more rewarding. You have already realized this by yourself, says a lot about you.

Btw, there are probably a lot of good professionals around you, and he lives here in Spain and barely speak English, but if you ever have any doubt or want to know anything, just PM me and i'll help with translations.

CleBrownsfan · 05-10-2013, 08:01 AM

Great story Icy - thank you for sharing...

Also, thank you for everyone's kind words - they do mean a lot to me!

Galaxy · 05-10-2013, 11:42 AM

Adorable boy! Love and joy comes in all different kinds of unexpected packages.

Logan · 05-10-2013, 11:55 AM

I was also going to share something along the lines of what Icy said...there are likely multiple organizations around Cleveland (check associations with hospitals and colleges) that serve as resources for families of children with special needs. It's great that you have support from family and friends but definitely don't overlook what else is out there!

CleBrownsfan · 05-10-2013, 12:41 PM

Logan - you're correct. We have a state run and non-profit organization in our area that we have been in contact with. We're looking forward to meeting parents with kids who have special needs as well.

Logan · 05-10-2013, 01:53 PM

Awesome.

Mizzou B-ball fan · 05-10-2013, 10:48 PM

FWIW.....would love to see regular updates going forward if you have the time.

05-09-2013, 10:42 AM	#3
Eaglesfan27 Hall Of Famer Join Date: Nov 2002 Location: New Jersey	He is very cute. Congratulations on the birth of your son and my best wishes for many many years of happiness. __________________ Retired GM of the eNFL 2007 Super Bowl Champion Philadelphia Eagles (19-0 record.) GM of the WOOF 2006 Doggie Bowl Champion Atlantic City Gamblers. GM of the IHOF 2019 and 2022 IHOF Bowl Champion Asheville Axemen.

05-09-2013, 01:18 PM	#10
PackerFanatic Pro Starter Join Date: Jul 2005 Location: Appleton, WI	He is adorable and you definitely should feel blessed to have him Best of luck to you and your family in the future! __________________ Commissioner of the RNFL

05-09-2013, 03:48 PM	#16
Subby lolzcat Join Date: Oct 2000 Location: sans pants	My 12 year-old has Down syndrome. Anything you need to know or want to talk about, pm me. Anytime. Your son is beautiful. __________________ Superman was flying around and saw Wonder Woman getting a tan in the nude on her balcony. Superman said I going to hit that real fast. So he flys down toward Wonder Woman to hit it and their is a loud scream. The Invincible Man scream what just hit me in the ass!!!!! I do shit, I take pictures, I write about it: chrisshue.com

05-09-2013, 04:21 PM	#17
Swaggs Coordinator Join Date: Oct 2000	Congrats (may have missed the announcement)! I have read the Italy/Holland piece before and think it is great. __________________ DOWN WITH HATTRICK!!! The RWBL Are you reading In The Bleachers?

05-10-2013, 05:08 AM	#24
Icy Pro Starter Join Date: Sep 2003 Location: Toledo - Spain	It's totally understandable that you went through 1,000,000 different feelings at first, but your final thought is the right way to see it, and shows you will be the perfect parents for him, big congrats for realizing it! One of my best friends, who is also the bassist of my rock band, is a psychologist that specialized in Down syndrome kids. He started a non profit organization 15 years ago to help them and the parents to integrate in the society and specially forming and helping them to find a job. He is doing a damn fine job, the kids and the parents love him because his not standard approach to their problems and integration, giving them way more freedom than what most of us ignorant people would think they could assume. I remember the first time he took a group of the kids (teens and older) in a bus and brought them to one of our live rock shows. Our initial (and ignorant) reaction was to feel weird about it and sorry about them, and to talk to them like if they younger or dumb or like if we could offend them with any comment we made. On the other hand, he talked to them like you do to any other teen, even making jokes with them about their limitations and they also made fun of him like any other teen do to their buddies. You should have seen their faces, they were so happy of being in a rock live show with hundreds of other teens, totally integrated with other people of the same age group. Since then, he repeated the experience a lot of times and it was great for the kids, their parents and for the rest of us that learned how special they are and how ignorant and full of prejudices most of us are about the down syndrome. He gave us a big lesson, It opened our eyes a lot, and changed the way we see down syndrome kids. They ARE special, they KNOW it, and they ACCEPT it, for the good and the bad, and it's stupid to feel sorry about them or to feel weird, and specially to show that to them. It is the first step to have them integrated in the society and to feel like any other person without that problem, with the good and bad situations every person has to deal with daily. That is the first thing he teaches to down syndrome parents, to not to feel sorry, sad and to hide or to over protect them that could be the first reaction, but to teach them to know their limitations and to get over them and to enjoy that process, that while probably harder than for any other parent, it's always way more rewarding. You have already realized this by yourself, says a lot about you. Btw, there are probably a lot of good professionals around you, and he lives here in Spain and barely speak English, but if you ever have any doubt or want to know anything, just PM me and i'll help with translations. __________________

05-09-2013, 10:34 AM	#2
Logan Head Coach Join Date: Oct 2000 Location: NYC	Beautiful boy!

05-09-2013, 10:43 AM	#4
Mizzou B-ball fan General Manager Join Date: Aug 2001 Location: Kansas City, MO	I dated a girl for three years in high school who had a brother with cerebral palsy. While obviously not the same diagnosis here, those three years around him taught me a lot about how much you can learn from special needs kids. They'll make you a better person and teach you a lot about how to enjoy life. Not always easy, but very rewarding.

05-09-2013, 11:46 AM	#5
finketr College Prospect Join Date: Jan 2005 Location: Inland Empire, PRC	cute kid! digging the trees onesie.

05-09-2013, 12:05 PM	#6
albionmoonlight Head Coach Join Date: Oct 2000 Location: North Carolina	Congratulations. And, like EF27 said, best wishes for many great years together.

05-09-2013, 12:49 PM	#8
Danny Head Coach Join Date: Jul 2001	Having a child with special needs is sort of like ordering a hot fudge sundae and getting a cheesecake instead (or replace two other desserts you really like). It may not be what you expect, but what once you start eating it, it is wonderful and brings joy to your life .

05-09-2013, 01:54 PM	#12
Mizzou B-ball fan General Manager Join Date: Aug 2001 Location: Kansas City, MO	I should add on a funny experience over the weekend. We were at a wine and food festival doing tastings of our wine. A guy around 30 years of age with Down Syndrome came over with one of his relatives to do a tasting. I kid you not, this guy knew more about wine than 75% of the people I served that day. Talked with him for 15 minutes about wines, food, etc. Really impressed and it was obvious how big of an impact his family had on his development and how much they allow him to be his own person.

05-09-2013, 02:48 PM	#14
Lathum Favored Bitch #1 Join Date: Dec 2001 Location: homeless in NJ	cute kid!

05-09-2013, 04:33 PM	#18
BigDPW College Prospect Join Date: Jan 2001 Location: Raleigh, NC	He is adorable and will bring you lots of joy.

05-09-2013, 04:56 PM	#19
Dodgerchick College Benchwarmer Join Date: Oct 2009 Location: Austin, TX	Awwww, he's adorable! I'm very much looking forward to updates.

05-09-2013, 07:38 PM	#20
Desnudo Coordinator Join Date: Jul 2003 Location: Here and There	He's a sweet looking boy. Good luck.

05-09-2013, 08:28 PM	#21
law90026 College Benchwarmer Join Date: Jan 2006	Congrats and all the best! Our elder one has some special needs as well so it will be tough but we wouldn't change anything

05-09-2013, 10:17 PM	#23
BYU 14 Coordinator Join Date: Jun 2002 Location: The scorched Desert	He is absolutely adorable and blessed to have you as parents, as you are to have him as your child. Wishing you many, many years of happiness!

05-10-2013, 08:01 AM	#25
CleBrownsfan Pro Rookie Join Date: Jul 2001 Location: C-Town	Great story Icy - thank you for sharing... Also, thank you for everyone's kind words - they do mean a lot to me! __________________ *XBox Gamertag:* Pronk32 FOOL-X - Cleveland Naps FOOL - Cleveland Cyclones SLOP - Cuyahoga Spiders

05-10-2013, 11:42 AM	#26
Galaxy Coordinator Join Date: Apr 2005	Adorable boy! Love and joy comes in all different kinds of unexpected packages.

05-10-2013, 11:55 AM	#27
Logan Head Coach Join Date: Oct 2000 Location: NYC	I was also going to share something along the lines of what Icy said...there are likely multiple organizations around Cleveland (check associations with hospitals and colleges) that serve as resources for families of children with special needs. It's great that you have support from family and friends but definitely don't overlook what else is out there!

05-10-2013, 12:41 PM	#28
CleBrownsfan Pro Rookie Join Date: Jul 2001 Location: C-Town	Logan - you're correct. We have a state run and non-profit organization in our area that we have been in contact with. We're looking forward to meeting parents with kids who have special needs as well. __________________ *XBox Gamertag:* Pronk32 FOOL-X - Cleveland Naps FOOL - Cleveland Cyclones SLOP - Cuyahoga Spiders

05-10-2013, 01:53 PM	#29
Logan Head Coach Join Date: Oct 2000 Location: NYC	Awesome.

05-10-2013, 10:48 PM	#30
Mizzou B-ball fan General Manager Join Date: Aug 2001 Location: Kansas City, MO	FWIW.....would love to see regular updates going forward if you have the time.

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