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Old 01-28-2007, 02:24 PM   #1
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Nafeesa1 HB User
Dauhter w/ Down Syndrome

Hello Everyone,
This is my first time here and I am lad I found this website. I have been reading some of the messages which have encouraged me to write about my experience with down syndrome. I will be brief. Here it goes.
About 15 months ago my daughter was diagnosed with Down Syndrome. She was born a little over 4lbs. The doctors came to me that evening and told me that they think she has DS. At that time I really did not know what DS was, therefore when they told me I just said ok. I called my family and best friend and they were explaining it to me. I was shocked and did not know what to do. However my loving family told me everything would be ok and they will help me through this. I did not have the chance to express my feelings of sadness. I kept everything inside because I did not want my family to know that I really did not want to take on the resposibility of taking care of a child with a disability. Now it is 15months later and I am still in shock and I cannot believe that this has happened. I cry everyday. It has been a struggle. We've been through the heart surgery which was very hard. I would like to speak to anyone who could help me though these feelings that I am going through. I love my daughter, but I am scared for her future and what this world has to offer her.

 
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Old 01-28-2007, 03:03 PM   #2
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snoopy220 HB User
Re: Dauhter w/ Down Syndrome

Good evening,

Growing up with a friend with DS in the 60's and now a co-worker with a five year old with DS..the world is an open place for children who have developmental delays. My co-worker is amazed at her son matthew who shall be enrolling in regular Kindegarden. He goes to his Mother's basketball games (she's the coach) matthew has learned all of the call signs during the games, and even the ref's watch him.
Be blessed for having a special daughter. She'll teach you what is truly important in life. Also get involved with your local community group that has avenues to help in education, any speech issues. Matthew also had the heart scare, and Cheryl was a mess for a while.
Hopefully you have friends/family to lessen the burden, and to give you some "away" time to relax.

~Liz

 
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Old 01-28-2007, 04:36 PM   #3
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Nafeesa1 HB User
Re: Dauhter w/ Down Syndrome

Thank you for your words of encouragement. Itdoes give me alot of hope to read positive stories.

 
Old 01-29-2007, 12:01 PM   #4
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Karen W. HB User
Re: Dauhter w/ Down Syndrome

Hello,
I have a DS son who is now 21 years old, I can remember when he was born, We were told he had all the Sign's of DS, I was in shock, I thought to myself, I don't even know how to raise a specail needs child, I have so much to learn. I was afraid to take him home because I felt he was more fragile than my other children. He started Physical Therapy at 6 weeks old, they had a nurse come out to house from Curative work shop, she would show us excersis we had to do with him daily. During that time I did cry allot, I felt his future was ruined and any hopes and dreams I have for him were gone and that life wasn't fair. I do think most parents go threw this in one form or another. But as time went on, I relized what a loving son I have and yes he has to work twice as hard to achieve goals and accoplishments, But i was there to cheer him on, I shed allot of tears of joy. He is now 21 years old, He is the joy of my life, he makes me smile eveyday, He is so funny and he see you for who you are as a person, It's not how pretty you are or what color you are or how heavy one may be, he accepets you for you. He is so loving and happy, I actually volunteer at Easter Seals once a week, I have learned so much and I can rmemeber one person telling me this- When you look at them, look right into there eyes, there is a beautifull person inside them, don't focus on there disabilities.
Karen W.

 
Old 01-29-2007, 05:06 PM   #5
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Nafeesa1 HB User
Re: Dauhter w/ Down Syndrome

Hello,
Right now I am at a point where I cannot get over the initial shock. Does any know of agencies or programs out there to help parents like me that are overwhelmed and stressed?Is what I am going through normal?
Thankyou
Nafeesa


Quote:
Originally Posted by Karen W. View Post
Hello,
I have a DS son who is now 21 years old, I can remember when he was born, We were told he had all the Sign's of DS, I was in shock, I thought to myself, I don't even know how to raise a specail needs child, I have so much to learn. I was afraid to take him home because I felt he was more fragile than my other children. He started Physical Therapy at 6 weeks old, they had a nurse come out to house from Curative work shop, she would show us excersis we had to do with him daily. During that time I did cry allot, I felt his future was ruined and any hopes and dreams I have for him were gone and that life wasn't fair. I do think most parents go threw this in one form or another. But as time went on, I relized what a loving son I have and yes he has to work twice as hard to achieve goals and accoplishments, But i was there to cheer him on, I shed allot of tears of joy. He is now 21 years old, He is the joy of my life, he makes me smile eveyday, He is so funny and he see you for who you are as a person, It's not how pretty you are or what color you are or how heavy one may be, he accepets you for you. He is so loving and happy, I actually volunteer at Easter Seals once a week, I have learned so much and I can rmemeber one person telling me this- When you look at them, look right into there eyes, there is a beautifull person inside them, don't focus on there disabilities.
Karen W.

 
Old 01-30-2007, 11:42 PM   #6
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Karen W. HB User
Re: Dauhter w/ Down Syndrome

Hi,
If I were you I would call your own Doctor and ask for some kind of counceling or support group. If all depends are where you live and what is avaliable. It's good to cry and get those feelings out instead of holding them in. I know I cried allot, it's okay that your feeling this way. My son is now 21 and he is such a specail person, so lovable and kind and funny, his only down fall is he loves to give the middle finger, he learned it off a movie. Your life will all fall into place, it may not seem like it right now but it will and you will accept your childs disability, there are allot of kids that have it much worse out there, when ever one of my kids have been in Childrens hospital for something, I would see allot and everytime I left I felt so greatfull for what I have.
KAREN

 
Old 02-01-2007, 09:08 AM   #7
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Nafeesa1 HB User
Re: Dauhter w/ Down Syndrome

Thankyou for your kind words. I am going to get in touch with my doctor for counseling to help me sort out these feeling.

 
Old 02-01-2007, 12:11 PM   #8
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cstram HB User
Re: Dauhter w/ Down Syndrome

She will bring you joy that you never thought was possible. There is a love and innocence so deep within each Downs person, you will be amazed at what she will teach you along the way. My beautiful sister is 46 years old and I cannot imagine my life without her. I have a six month old that just loves her Aunt Patty. It melts my heart to see them together. She is fantastic with babies. I came across a picture of when she was holding me as a little baby. She is an awesome big sister. She always remembers my birthday and all the rest of my siblings (5 brothers, 2 sisters).

 
Old 02-01-2007, 09:03 PM   #9
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Re: Dauhter w/ Down Syndrome

She does light up a room. She is a happy child and loves her older brother deeply and vice versa. How is your older sister functioning now? I would like to hear from others as well how there older child or family member, friend etc are doing. Thank you all. You have been very helpful.

 
Old 02-06-2007, 09:02 AM   #10
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Re: Dauhter w/ Down Syndrome

I can certainly understand what you are going through. I have a daughter who is now 5 with D/S as well as other health concerns. We have been through the heart problems as well. I know right now you are over whelmed with all the uncertainties of your childs future. Children with down syndrome have a great spectrum of disabilities, some mild and some severe. I remember the day the doctor told us that our daughter had down sydrome. I was devistated. My mind ran through all the steriotypes. But my best advise to you is take it one day at a time. Get yourself involved in support groups, there are many. Be sure to find out what your State has to offer your daughter. Our daughter has been involved in therapy since she was very young. Make sure you take advantage of all the programs offered for kids with dissabilities. You'll want to get her enrolled as early as possible. Our daughter overall is doing great! She is in a integrated Pre-K class and she is making great strides. Her speach is getting near normal levels and the kids and teachers rave about her contributions in class. I love my daughter with all my heart and she truly has been a blessing in our lives.

Last edited by bkhietpas; 02-08-2007 at 02:40 PM.

 
Old 02-07-2007, 02:20 PM   #11
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CaringMom HB User
Re: Dauhter w/ Down Syndrome

Nafeesa,
I was skimming the boards and checked this to see if possibly you had run across it. So glad you have! I'm sure you will find the support you need here from others with DS children. (I had replied to one of your threads on another board) Hope all is going well. Take care of yourself and that angel of yours!!

 
Old 02-09-2007, 10:46 AM   #12
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snshnmom HB User
Re: Dauhter w/ Down Syndrome

Nafeesa1, I just joined this forum today and read your post. I have a 14 yr old son with Downs. One thing I don't think anyone has mentioned in reply is the importance to "grieve" for the loss of the baby that you THOUGHT you were going to have. When we are pregnant, we have all kinds of hopes and dreams and expectations for the child we are carrying. When our baby is born and all of our plans fall apart, it is natural and expected to be sad and grieve for the loss of that "normal" baby. That's not to say we should grieve over the birth of our DS baby, but over the baby we "lost". Does this make any sense to you? I was told this by many other mothers of DS children when we joined a Down syn. support group soon after my son was born. That advice helped me to let myself be sad and not feel guilty about it.
My DS son is the joy of our lives. He is so fun and funny and smart. Every new thing that he learns how to do just excites us sooooo much. He knows how to read and spell and is learning addition and subtraction. I know that you will get the same joy and happiness from your child that we get from ours. I'm sure your family would understand the sadness you feel right now. Talk to them about it. It may help you adjust to your situation better if you can just get this off your chest. Good luck to you.

 
Old 02-09-2007, 09:57 PM   #13
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Nafeesa1 HB User
Re: Dauhter w/ Down Syndrome

Thank you all for the support and the advice. I read through each of the postings and I really appreciate the help. My daughter has been doing very well lately. She is a very happy child. I am getting better too. I am not holding everything in. I am expressing my feelings and talking more to people. I pray everyday that she will be ok and live a productive life.
Thank you all again.

 
Old 02-11-2007, 03:12 PM   #14
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lilly5 HB User
Re: Dauhter w/ Down Syndrome

I don't know if this will help, but you are not alone. When I gave birth to my daughter 16 years ago I felt like you do now. My family and friends all told me it would be alright. Raising a child with Down syndrome is difficult but so is raising a child without DS. Raising a child is hard. The challenges we face are different. We do not need to worry about teen pregnancy, alcohol and drugs, runaways, etc. We do worry about which is the best school for our children, are they getting enough services, how will they reach their potential and will I know when she does. Loving a child is easy, teaching a child is easy, raising a child is hard - Down syndrome or not.

I didn't want to take my child out of the hospital when she was born and many given days I wish I had left her there for someone else to raise. But would they do as good a job as I do? No one else can care for my daughter like I do. There are still days I don't feel like having a child with DS but I also have two other children I don't feel like dealing with some times.

Life is a stuggle. It is ok to feel like you can't handle this. You are not alone. I will never judge you. I am sympathetic and can feel your pain. I have it too. Not everyday will feel like this one. Tommorow is another day.

 
Old 02-14-2007, 08:22 PM   #15
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cstram HB User
Re: Dauhter w/ Down Syndrome

Quote:
Originally Posted by Nafeesa1 View Post
She does light up a room. She is a happy child and loves her older brother deeply and vice versa. How is your older sister functioning now? I would like to hear from others as well how there older child or family member, friend etc are doing. Thank you all. You have been very helpful.
My sister is fantastic. She lives with two other women in independent housing. She works part-time and has had a job since she was about 26. There is someone that comes in to make sure their groceries are bought, dinner is made, and that basically they are having their needs met. Family and other organizations monitor the situation, but she is totally independent. The one thing to remember is that they are more like you than you know, but better. If only the world had more people who were as delightful as DS people. If you nurture and support them to acheive to the best of their ability, they will do so. Patty was number 6 of 8 children. When my mother asked her doctor when she found out she had a daughter with DS what was she going to do, he said you will take her home and love and treat her like any of your other children. That was in 1961. That was the best advice ever. Keep in mind your child's special needs and be extremely patient, encouraging and supportive. There is so much potential, it just takes a little longer to get there. Remember they are slower, not stupid by any means. That also means they are like any other child and what you expose them to will be a direct result as to what you get out of them. Oh, the other thing, all of us say my sister Patty is the most normal one out of all of us and it is so true! She has the most positive disposition!!! Get out there and meet others with DS. We all volunteered with the Special Olympics. That is a great networking opportunity for you. Lots of fun!

 
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