Down Syndrome Community
SIMPLYSTAR~ I've got a question for you.
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This forum is for questions and support regarding Down Syndrome issues such as Dental Problems, Communication Problems, Developmental Disabilities, Hearing Loss, Hypothyroidism, Immune System Problems, Learning Disabilities, Joint Problems, Muscle Weakness, Respiratory Disorders, Seizures, Sleep Apnea, Weight Problems.

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SIMPLYSTAR~ I've got a question for you.

Hi~ I'm 21 and going to be having my first baby a BOY diagnosed with Down Syndrome. I'm needing advice from someone who's been thru it, no matter how long ago. I had a 1/1000 chance of a D/S baby since my husband and I are only 21. but god has his plans... our little boy will also have my rare skin disorder, called EHK, a form of Ichthyosis. it'll just require extreme care immediately after birth... but afterwards. He'll be fine. (I have EHK too so I know exactly how to care for him. so does my mom so she can help!) Up front I want to say I plan on putting NO limitations on him because that'll only hinder his growth... mentally and emotionally.

Was your son born floppy? (low muscle tone)

You said in another post he works?  What type of job is it.

Mentally, what age is he?  my prayers are that my son can be as smart as possible... and I know with the correct teachers and interventive therapy he can be.. but I have no experience about what mental age these people can reach.

How long did it take for him to reach milestones as a baby... ie:

Eating real food instead of milk,
Talking,
Walking.
Etc.

I'm very curious and If you want you can PM me otherwise... I'd be happy just to have you respond on here. I hope I'm not being intrusive, but by your other posts you seem VERY open.

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7 Comments Post a Comment
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167426_tn?1254089835
Hi  congrats  on your baby to be.  I will get back and give you a detailed  post  tomorrow after church. this will be your first child?    marty
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363110_tn?1340924019
Marty~ Yes, he is our first baby.
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167426_tn?1254089835
Will start at the first , I am an RN and was working in OB for 12 years prior to getting pregnant with Chris,  I was 40 years old, I had 4 other healthy children, the pldest was 13 at the time.  I think I knew  he was "different" while I was carrying him, when he was born, July 4th, 1970, I knew as soon as they placed him up for me to see. I told the Doctor, I have a little Mongaloid, that is what they were called back then, he told me I was too smart and asked the nurses to remove him, they were afraid I would try to harm him, that was the general practice then in delivery rooms.  My pedatrician toldf me later that day that he would get him placed in a state home, I would not have to take him home, I was furious, told him to get out and stay out.  Yes Chris was "floppy" had very poor muscle tone,  they detected a heart murmur , which is fairly comman with DS babys. We went home, I treated him just like I did any of my other babys, except I exercized his arms and legs, to pump blood  to the heart, and to strengthen the muscles.  The heart murmur disappeared  by the time he was 3. His progress was slow, but achieved, sat up without support  at 15 months, walked a little after he was 2. He started to school  when he was 2, we were very fortunate that  our city had implemented the ADA act and special ed was offered from age 2  till 21. Also I worked with all of his teachers, what they taught at school I carried on at home. He also had very good teachers, except for one, and we  { the other parents and I } got her removed.  This is very important to development, be proactive with the schools, get all the necessary help you need, Chris had speech therapy, hearing aide, sign language classes,  as he picked up the sign , he would get the word and speech,  his cognitive ability was always good.   We were all proud when he recieved his dipolma from High School. We all worked with him , my kids were so good with him, especially his sister. Growing older  he was never treated any different , had discipline, rules and was taught to be as independant as possible.  I tried to breast feed him, but because of a small mouth, he could not manuver  his tongue properly. It is not the tongue that is big, it is that the mouth is small. We read about the surgery to reduce  the size of the tongue but ruled against it as it hasn't proved to benefit that much.  He was bottle fed until he could hold a sippy cup, about 1 year, He had regular baby food  until he could tolerate  regular food. All these things you can tell when they are ready.  I never pushed Chris  but would reinforce good growth as he needed it. He had Hirschsprungs disease , abnormal band on the bowel, comman with DS children,  I used stool softeners and occasionaly enemas to correct this, he had very large stools, also comman with DS, have to watch to see if there is distention, vomiting  . constipation or diarrea (diarrhea).
At age 30 he developed a necrotic bowel, and had surgery to remove 8 feet of bowel, since then has been fine.  Chris has lots of speech , and understands everything.  His school years were very productive and between them and us, he became quite independent. He now works in a facility for people with disabilities, and they offer work out in the community, he works with a team under supervision, earns a paycheck and pays taxes. He works at cleaning motel rooms, filing, shredding, envelope stuffing for the utility companys billings, packing pens for a local advertizing company, cleans up the grounds after races at the local track, and many more things. They have computers at the facility, they all have access to those, set up for games and or learning the basics. Chris lost his Dad 14 years ago,  he still lives at home with me, we have a double wide manufactured home and his rooms are at one end and mine at the other.  He is a lot of help  around the house, keeps his own rooms clean and folds all the clothes and puts them away, empties the dishwasher, vacumns, carries out the trash, and so much more.  A good teacher  he had back when he was about 8  told me to never let him develope a habit or action that was not suitable for an adult, I find that once Chris learns something, he does not forget it.  I went back to college for 2 years when he was 8 to learn how to work with him better, I then gave up nursing and worked  in the facility where he is now for the next 15 years. My daughter also got her degree and she works there now. they serve about 450 people, all kinds of disabilites and some with a mental disabilty. As far as ability to learn, there is a curve in intelligence with DS just as there is with all of us, Most DS go around 70 to 90 on the scale,  Defining age as a tool to guage learning ability means nothing,  Chris continues to surprise me daily ,  he picks up learning from many sources. We travel a lot and also camp, he is a frequent flier and does very well, does Special Olympics, swimming, track and basketball.  Goes to church and enjoys it.  has a knowledge of Jesus, loves little children and pets.  I never talk down to him,  I may have to find ways of explaining things till he understands  but once he gets it, it is learned.  A good place to get together with other parents in through the local ARC, there is also a national Downs Syndrome Org.  I met with other mothers with 2 and 3 year olds when I was just staritng out. We take him bowling, to movies, concerts, he loves music, dances, parties at friends homes.  Never be ashamed of your child,  introduce him into all you can in the community and life experiences and you will find you have a great child.  I have a respite program where I can go out without him , and a trained person comes in my home to be with him. This gives me time to do things sometimes without him.  We have been to Disneyland 4 times, but I am going to a class reunion next month and I will have respite for him that weekend.The ARC is who supplies my respite. You and your husband need some time to yourselves also, be sure you take it.  Sorry this is so long  but I tried to show you that your son will be more like all other children than be different. One thing we don't have to worry about is cars, drugs and crime.  My doctor told me that Downs males are sterile, so don't ever let someone tell you that your son raped or impregnanted  a girl. Chris does masturbate  occasionally  but always in the privacy of his room. They do have all the emotions that we  have, anger, saddness, happy, teasing, afraid, pain, lonliness, but a lot of Love .  It used to be these children died  in their teens, most live now to in their 50s and 60s. The most comman cause of death is the heart. Exercize is so good for that, keep the weight under control, healthy diets, dental care, yearly checkups and a positive family life.  If you have any more questions i will be checking back often  and will try and help you.  My daughter is fighting Ovarian cancer right now and so I am over on the ovarian cancer forum a lot.  I got this forum started months ago. MedHelp was so nice to get it up and going.  Marty
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363110_tn?1340924019
I'm so sorry it took so long to respond. But thank you so much for your insight and experience on this!
I greatly appreciate it.
So far my son has had a Fetal Echo, as well as a Live consult with a cardiac specialist who did an ultrasound himself to take a look. (about 1 month apart) so both tests have come back normal thank god.

it's so funny because in my stomach he doesn't feel different. just right. You know?
he's kicking so hard now, and his daddy got to feel him last week for the first time and TRULY feel him kick last night. We were watching TV and he'd been kicking a little and pushing out near my ribs (he seems to LOVE my ribs) so I asked Carlos (hubby) if he wanted to feel.
He said yes, so I placed my hand over his on my tummy and TJ kicked so hard! I felt it thru my hubby's hand and he got the funnyiest look on his face and grinned at me! He couldn't believe our son kicked that hard!

As for Downs males being sterile. I know about that from the paperwork I've read. So far I think there've only been 2 cases of fertile males with D/S. I know masturbation is somthing that'll happen... he's gonna be a GUY for goodness sake. I only hope that my hubby can teach him to do it in private. And pray that he finds a nice girl to befriend and maybe marry.  
Since I wrote you for advice I've come into a greater sense of peace about this. Right now I've got only 12 weeks left, and am looking forward to seeing my little boy. I know he'll be a wonderful person and will teach my family and I (my extended family) lots of new things about love and openness.

again, thank you for your response.
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Hi,
When I had my  DS son 8 years ago , it really surprised me because I didn't know about DS until he was 3 months old. Then, I experienced things like - my sister  told my mom to watch over me because she was afraid that I 'd harm my boy, my sister in law said that my son is  a demon son not Jesus son, also one of my aunt told me to give him away to someplace out of town. I felt really sad of how they thought about my son. They thought I would be ashame of my son. But I told them that they got it all wrong. My son is the one who has the right to be ashame of me because I made him like that . My love for him is really beyond my thought . He is the best gift from God - after my daughter. I even learn a lot of things from him . I entered a new world that I never thought it exist before, meeting others with the same problem- some even worse, sharing with them . I tried to find blessing that God Hid it from me. My spiritual side grew day by day. I really thank God for sending Juan to me. I really proud of him. What only worries me now is how would he doing if I'm not around anymore because in my country there is no regulation  about protecting people with disability.
I think you'd be a wonderful mother to your son, because you are well prepared for it. You too  are young so you have a lot of energy and time to assist your child to prepare for his future.  I suggest you to have your second child as soon as you can so they can grow together , cause it really help a lot for a DS. A DS person's heart is pure.  Your son would be fortunate to have you as parents and to  be born in a country that  really care about this issue.
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363110_tn?1340924019
Thank you so much for your insight. I've got about 6 weeks left now! it's going so fast!

my next child will be 2 years after him, simply because we A) can't afford 2 children right now, and B) I REALLY need to give my body time to recover from this pregnancy. it's taking a toll on me!

I was able to meet with my local D/S awareness group today and met 3 wonderful little girls with D/S. all between 4-8yrs old. It was so cool!
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167426_tn?1254089835
congrats and Good Luck with your family,   I am sure you will find out like so many of us before you have , that there are worse things than having a DS child, i find my son to be my biggest asset now.
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