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Raising a child with Down Syndrome

WidowWidow
posted 1 year 5 months ago
I have a beautiful 11 year old little girl with Down Syndrome. I can't say that my heart did not fall to the floor when we found out her diagnoses at 10 days old. I also can't say that we haven't had many problems over the years. It can be frustrating and lonely to see your friends going on about milestones their children have reached when your child is still so far behind. I can however say that she is the joy of my life and has taught me more than I could ever imagine! She's the happiest child I've ever known and I wouldn't change her for the world!

Does anyone else have a child with Down Syndrome?


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ArmyrielyArmyriely
posted 1 year 4 months ago
My child dose not have down syndrome but I do understand how you feel. My second child Lilyan was born at 28 weeks, we didn't know until she was nearly 2 that he needs went way beyond just being behind because of her early birth.
At 2 she still wasn't walking and hardly talked, we took her to so many doctors appointments and worked with her every day. It was so hard to accept that she was that way because of her delivery and she would never be like her big sister or her younger brothers.
My son Joshua has APS so he is a handful too but I am thankful he his not like his sister because he has the chance to learn to act like other kids if he wants to but he doesn't have to by any means.
I celebrate my children for being who they are and wouldn't change them for anything.

WidowWidow
posted 1 year 4 months ago
Oh my, she was born very early!! I as well celebrate my daughter for who she is and wouldn't change her for the world. It may be hard at times but how different would our lives be without them? I also firmly believe that we become stronger parents when our children are not what society considers as perfect.

Amelia88Amelia88
posted 1 year 4 months ago
I don't have a child with Down Syndrome but I do have an aunt with it! So I'm well aware of just how amazing and loving people with Down Syndrome are. What you said about your little one being the happiest child ever really made me think of how happy my aunt has always been! They're a blessing - I hope that you find a supportive community of other parents with DS children that can encourage you!

ArmyrielyArmyriely
posted 1 year 4 months ago

Widow said:
Oh my, she was born very early!! I as well celebrate my daughter for who she is and wouldn't change her for the world. It may be hard at times but how different would our lives be without them? I also firmly believe that we become stronger parents when our children are not what society considers as perfect.
Because my children are different I am very protective. I almost never higher a baby sitter because I feel like others can't handle my sons needs this means I or my mom always have my kids. My social life is limited but I don't mind much most of the time I rather be at home with them any way

WidowWidow
posted 1 year 4 months ago

Quote:
Because my children are different I am very protective. I almost never higher a baby sitter because I feel like others can't handle my sons needs this means I or my mom always have my kids. My social life is limited but I don't mind much most of the time I rather be at home with them any way


I'm glad to find that I'm not the only one that does this. It's been over 2 years since my husband and I have gone out on a date. I worry that someone will not be able to understand what she wants. I worry that she will cry and they won't be able to figure out why. I do have older kids that can help but they don't always understand her either. Sometimes I think maybe I am way too protective?

LvMyFmly5LvMyFmly5
posted 1 year 4 months ago
My 16 year old daughter Sage has Down Syndrome. My husband and I found out when I was 4 months pregnant with her. What was shocking to me was that the genetic doctors that we had seen called and told us the results of the amniocentesis I had done and told us the news, and strongly suggested that I have an abortion. My husband and I were competed floored . It was like them saying, "Oh your baby is not perfect just get rid of her." I was really upset by this and I had no plans on aborting my daughter. Yes she has been a challenge over the years with her stubbornness as well as some health issues here and there but there has never been a moment that my husband and I have ever regretted having her. Sage beat the odds so many times over. We were told by specialists that she may never walk and if she did, the earliest she would was at 3 years old. They were wrong. She started walking at 13 months. We were also told she would not start talking until she was two years old. She started trying to say words at 6 months. When Sage was two years old we found out she had a small cyst on her brain within two years it disappeared. She never ceases to amaze me.

Sage is smart, beautiful, funny, and loves to help out with out even being asked unlike my two boys. She is going to be a senior in high school next year and it kind of saddens me a little that my little girl is growing up. It's funny she used to be a daddy's girl when she was little but now that she is getting older she has started to cling to me and I think it is awesome! She wants to know about make up and fashion and of course her dad wants no part of that.

WidowWidow
posted 1 year 4 months ago
That is so great to hear! I'm not sure how doctors and specialists deal with a diagnoses of Down Syndrome everywhere else but in my state they were horrible!! We didn't know prior to her birth that she had Down Syndrome. I know there is a test that can be done but I chose not to have it done because I would have had her anyways. I guess looking back, I could have been a lot more prepared.

Nobody said anything when she was first delivered. Her ears were folded against her head but I was told it was due to running out of room in the womb. The next day when a doctor came from the clinic, I was told she was deformed and had Down Syndrome. Needless to say my heart fell to the ground! I was alone at the time. I seriously didn't know much about DS in the least! I cried for hours. I looked at her up and down. Things that they said were signs, I saw in her father as well. They took blood for a test and wouldn't you know it, they lost it! How do you lose a blood sample? We had to take her back again. At ten days old, they said she had a hole in her heart and rushed us to a major hospital out of town. Thankfully she didn't have a hole. At 2 weeks old, we were told by her physical therapist that we'd be lucky if she was walking by the time she was five. Seriously? How can someone even tell that?

I could seriously go on and on. It seemed that nobody ever had anything positive to say about her. It was always something negative!

LvMyFmly5LvMyFmly5
posted 1 year 4 months ago
Hi Widow,

I am so sorry that you had to go through all of that. It really upsets me that in some areas there is not a whole lot of knowledge from doctors on disabilities like Down Syndrome especially in babies. I wish that you were able to have had a better experience with your daughter's birth. I am glad that your daughter did not have any real health problems when she was born. It sounds like you had a similar experience to mine when it comes to the physical therapists. I was able to get my daughter a pt at 3 months old through a regional center in my area and like I said in my prior post she said my daughter would not start walking until she was 3 years old. Like you, I was pretty upset about that but the great thing is she started walking way before that. Talk about a slap in the face to the pt.

I honestly don't understand why doctors and therapist are so negative when it comes to children with DS and the mile stone expectations of them. In my opinion these doctors and physical therapists need to re-educate themselves on this subject. Because most of the time their assumptions are way off and they just end up making themselves look stupid.

You sound like a great mom and love your daughter very much. Like my daughter I am sure that she will keep showing how wrong these doctors and therapist are. I can definitely relate to you and enjoyed reading your post.

moonmoonmoonmoon
posted 8 months 2 days ago
I don't have a child with Down syndrome, but a friend of mine has two great boys with Duchenne muscular dystrophy, so I know what you feel. I have read that thanks to diagnosis PGS NGS now it is possible to detect Down syndrome and have problem-free pregnancy and a healthy baby.

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