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Old 07-27-2009, 10:51 AM   #1
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goochifer HB User
My son has DS...now what?

Hi!
I am a single mom with three beautiful boys. The youngest, Caleb, has DS. He is 15 months old now and we have been to every doc imaginable! He is a wonderful little guy with a great personality, and is so easy to care for, but I dont really know what to expect. With my first two I read the books and talked with other new moms so I had a pretty clear picture of what it would be like for them at a certain age. Its not that way with Caleb. I went to a playgroup for DS twice but the mothers there didnt want to discuss the issue, rather they wanted to discuss other things in there day and let the kids play. We have ECI that comes out twice a month and an OT that comes out just as often but I still dont have a clear picture of where my son is and where he will be. He still has no teeth and doesnt crawl yet. I guess I am really asking, what will the next year be like for Caleb and the family? What should he accomplish, when will he get teeth, what should I be feeding him?!?!? Right now he eats about 3-4 jars of step 2 baby food and three 8oz bottles of pedisure everyday. Is that ok? AHHHHH someone help!

 
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Old 08-24-2009, 08:59 PM   #2
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Walter Smith HB User
Re: My son has DS...now what?

Hi, I have watched a few documentary of people with DS. As a matter of fact, I have even volunteered for a home with DS clients. Personally, I will like to advice you not to be too worried. There is no point predicting what is going to come . I believe that you should just try your very best to look after your child like any other children. Let him live a normal life as far as possible. Persist in helping him live a normal life. And just to give you a little fact, studies have shown that people with DS are in fact happier than ordinary people. And after interacting with them, I think so too. Cheer up friend and don't give up.

 
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Old 09-03-2009, 11:28 AM   #3
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Cath54 HB User
Re: My son has DS...now what?

My son turned 23 years old last month and I am still asking what will be down the road for him. You just don't know and you wouldn't want to know. My son is low-functioning and I would not have wanted to know that in the early years, where he would be today, if I had known, I guess I wouldn't have been able to have the hope that compelled me to always reach for the top bar with him, to just keep reaching. My son walked at 18 months and rolled over at 4 weeks, was completely toilet trained at 6 years old but now functions at the pre-school level but you know what, my son is a gentleman and has compassion for others, he conducted himself in social situations so that you wouldn't even know that he was different. It was always my goal for him, not the school's for darn sure, to have the social skills training the top priority so that he could go out into the world and enjoy it and next the personal care skills which he excels in. So, just take each day one at a time and you'll love him no matter how he functions and whatever level he functions at, he can still be happy. Other than actual health related issues, your child with Down syndrome is normal, treat him that way.

 
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Old 09-04-2009, 03:11 PM   #4
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BrendaW1966 HB User
Re: My son has DS...now what?

CONGRATS !!!! You are surely blessed with a miracle. My son Joshua was born almost 18 years ago. His 18 birthday in 2 weeks. I was scared to death when he was born. He was wisked away from me and our small town hospital and sent to Uconn medical center in Farmington. He required one surgery after another. He had heart issues, intestinal blockages, trachia issues and the list goes on. And here we are at an 18th birthday! Once all that was stabalized/or resolved, it dawned on me here was this child with something I knew nothing about. He did not speak, walk, eat very well. He just simply layed there and with tongue out, smiled an adorable smile. And our journey began. My advice to you is find all the assistance you can: find a speech therapist for him (one that teaches total communication.(verbal as well as sign language), next..physical therapist and occupational therapist. Look to the Down Syndrome Assc. They are made up of everyone imaginable. They can guide you in all aspects of care for your beautiful bundle.And help you to become a true advocate for your child.Our children can not stand up for themselves, we must do it. All DS children are different. My Joshua functions on a level of about 3-6 yrs of age depending on the task at hand.Joshua walked when he was 5 1/2, but could sign over 3500 words by age 4.His verbal skills are limited.He at this time can dress himself though is unable to tie his shoes and do small buttons.(we purchase clothes with snaps and large zippers.His teeth came in at about age 7.(with some help from the dentist.Talk to him as much as possible. Ask him to lead you to something he wants and request he verbalizes his needs. Involve him with other typical children as much as possible.DS children learn from others and they mimick.They are little sponges that soak up everything. Do not limit him or overprotect him(as we all want to do with our children.)My son goes to school and will until he is 21. He also has work experience. They go to different companies and are taught skills according to their level. Let him help you with various tasks about the house. Yes even at 15 months old. EX:sorting laundry. As you are sorting clothes say aloud...dark pile..white pile..Your baby will learn from these things. And most of all, DS children are the most lovable , teachable children. They only want your approval and hugs(boy do they love to hug!) One of the tasks my Joshua has had the most difficulty with is stranger danger. He thinks everyone is his friend. We have to keep a good hold on him when out in public or he will take someones hand and walk away with them. Good luck and Happy parenting. Parenting in itself is one of the most rewarding experiences ever...Parenting a child with special needs is even more of a reward.

 
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Old 01-01-2010, 07:59 PM   #5
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genahudson HB User
Re: My son has DS...now what?

my son has a syndrome, but not down syndrome.. every child is different though!! does your dr have any info on down syndrome?? eci should be able to give you alot of direction too.. if they arent then tell them what you need, they will help! i live in fort worth, im not so sure where belton is.. does your son see a geneticist? they are a good source of info too!! hang in there, things will get easier.. you do have to search for info though, mom / detective!!

 
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Old 09-08-2010, 07:19 AM   #6
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Queenie22 HB User
Re: My son has DS...now what?

I too have a wonderful, loving, beautiful son with DS. He is 15 right now and in his last year in middle school. His name is Zachary. He is soooo sweet and like the lady posted, he is a little sponge and learns and picks up everything!! He does hear when you think he isn't listening, oh he is listening alright! Don't think they won't learn from hearing you talk about things. Zachary is very smart. He is pretty verbal, but pulls away some at school. He won't speak as much at school as he does at home. but finally at 3 years in middle school he is opening his eyes more and looking at his teacher. We have a great teacher right now, but in the past had some really bad ones. You HAVE to watch, listen, check in, etc. with school constantly or things won't happen like you want. If you don't then no one else will. I fight for him all the time! You have to be his advocate. Zachary was born 3 months premature, 1 pound 14 ounces, very sick. He like the other mom, has had everything go wrong you can imagine! He had 2 holes in his heart and had them repaired with open-heart surgery and also had the intestinal blockage, preforation and had to have a colostomy for 4 months. He is a fighter for sure! He is our little miracle! Right now at 15, he is very stubborn, wants to be independent more now. Which is good. I am scared to death about high school next year. If anyone can give advice on high school to me would be great. What to expect, what they will have him doing, etc. I really am stressing over it. He will go where my 19 yr old went. I am so glad to find this post and talk to others. It always is a big help!
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[SIGPIC][/SIGPIC]Have a blessed day! Queenie

 
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Old 10-05-2010, 10:14 PM   #7
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harwellch HB User
Re: My son has DS...now what?

I have a daughter that is 12 years old that has Downs Syndrome. I was only 19 when I had her and I feel your pain because I had no idea what to do. Just take it one day at a time. As far as teeth coming in, they will it just takes a little longer than other children. Try to find foods that are soft so that he can practice chewing and moving the food around his mouth. Such as banana's. He can eat things that other kids his age do, just mash it up. ECI is a great program, and will help alot. I know it is hard but you have been blessed with a little angel. There will be many struggles but you will be able to get through them. One day he will just start doing things you never expected and you will be overwhelmed with joy. < edited > Take care and God Bless.

Last edited by hb-mod; 10-06-2010 at 12:21 AM. Reason: Please don't post personal info such as real name, email or phone.

 
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Old 04-20-2011, 12:59 PM   #8
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washington HB User
Re: My son has DS...now what?

Quote:
Originally Posted by goochifer View Post
Hi!
I am a single mom with three beautiful boys. The youngest, Caleb, has DS. He is 15 months old now and we have been to every doc imaginable! He is a wonderful little guy with a great personality, and is so easy to care for, but I don't really know what to expect. With my first two I read the books and talked with other new moms so I had a pretty clear picture of what it would be like for them at a certain age. Its not that way with Caleb. I went to a playgroup for DS twice but the mothers there didn't want to discuss the issue, rather they wanted to discuss other things in there day and let the kids play. We have ECI that comes out twice a month and an OT that comes out just as often but I still don't have a clear picture of where my son is and where he will be. He still has no teeth and doesn't crawl yet. I guess I am really asking, what will the next year be like for Caleb and the family? What should he accomplish, when will he get teeth, what should I be feeding him?!?!? Right now he eats about 3-4 jars of step 2 baby food and three 8oz bottles of pedisure everyday. Is that ok? AHHHHH someone help!
My two year old with DS had her one year molars come in around her 2nd Birthday. She still does not have her front bottom or top teeth. I have been told that it is quite normal for a DS child to have their teeth come in much later.

The spectrum is so large for every child that it is very difficult to say where your son will be a year from now. The difference with DS is the large differences in the children can occur with things like talking, walking, crawling and eating. Other children will crawl, talk, and walk by the time they are 1 - 1 1/2 years. So parents have a vast range of when they learn to read for instance or learn to ride a bike. For DS the children can vary widely for when they learn to walk or talk or crawl, and can be in very different places by age 10. I am sorry I know that isn't very helpful. I think the thing that has helped me the most with my DS daughter is to treat her as if she was completely normal, and not to think at all about her biological age. She is 26 months, but in my head she is around 15 months since that is where she is developmentally. It helps me think of the 'what is next' more easily if I am comparing the progression to what I would expect at a younger age. The other thing I notice is she does the same progression my other children did, it just takes longer; except for talking.

So I will share where my 26 month old is at, and it might give you some idea of where your son might be in a year. Remember though your son, a year from now, could be in a very different place. The two boys I know from church, age 8, with DS are in vastly different places. One of them is around 1 1/2 developmentally, or less - and the other is 5 or 6 developmentally. If you focus on your son, and whatever he does that brings you joy - it helps a lot.

Our 26 month old:
Still eats yogurt and baby food. We are trying to put her on solids. She can feed herself, but she has an aversion to solid food we need to work around. Chewing is somewhat difficult.
Pulls to standing regularly. Walks on furniture. Is staring to take steps when I hold her hands.
Says words and sentences.
Started crawling around ?? I think 15 - 18 months?
Has a great pincher grasp with thumb and forefinger. Plays with toys like a 2 year old.
Screams... the post I am about to make, with a question I have.

I hope something I said helped.

Last edited by washington; 04-20-2011 at 01:00 PM.

 
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