16 Weeks Pregnant - DS Diagnosis

[jemett]

I have a few close friends who have children with DS, my son has a unique chromosome disorder, so I became friends with these ladies through our children.
My friends children are 15 and 16 years old and they all are wonderful young women and men. Life hasn't been easy and you do learn to have a big voice and stand up for what you feel is best for your child. Two of the children attend mainstream school and the other 2 go to a special school.
I home educate my son as school isn't something for him.
I have 2 older children and I feel having a special needs sibling has taught them compassion and opened their eyes in understanding that everyone is different. So much so that my daughter is a nurse and my son works for Hampshire autistic society with adults.
Life will be full of struggles but it will also be filled with so much more. I love all my children but having Teddy (my son) is an all consuming utter love and joy.
There's a new show on Lifetime tv, called Born this way, about young adults with DS, I've watched the first 2 episodes and it makes me smile all the time.
Good luck with everything and if you need a chat please feel free to pm me.

[DisneyMadMummy]

Originally Posted by jemett

I have a few close friends who have children with DS, my son has a unique chromosome disorder, so I became friends with these ladies through our children.
My friends children are 15 and 16 years old and they all are wonderful young women and men. Life hasn't been easy and you do learn to have a big voice and stand up for what you feel is best for your child. Two of the children attend mainstream school and the other 2 go to a special school.
I home educate my son as school isn't something for him.
I have 2 older children and I feel having a special needs sibling has taught them compassion and opened their eyes in understanding that everyone is different. So much so that my daughter is a nurse and my son works for Hampshire autistic society with adults.
Life will be full of struggles but it will also be filled with so much more. I love all my children but having Teddy (my son) is an all consuming utter love and joy.
There's a new show on Lifetime tv, called Born this way, about young adults with DS, I've watched the first 2 episodes and it makes me smile all the time.
Good luck with everything and if you need a chat please feel free to pm me.

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Sorry if I'm being to nosey, you can tell me to ≈≈≈≈≈≈ of if you would rather not answer lol but what chromosome disorder does your son have? Mine has one to x

[Bootrip2]

Originally Posted by orlando10

Hi
Firstly congratulations, I don't have experience directly with DS but do have a child with a disability, my little girl suffered a stroke in the womb in my last weeks of pregnancy and has right sided hemiplegia cerebral palsy and this wasn't diagnosed until she was 5 months old and I can totally relate to the other posters who said it's ok to grieve for the child you thought would be, its ok to be frightened of the unknown and of course how life will be, a friend forwarded this passage to me and I found it helpful,

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

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.



My little girl is six now and after us being told they didn't know if she would walk, talk etc she is just like any other six year old albeit with a few wee difficulties and epilepsy. I'm sure with such lovely parents and a big brother your little one will bring much joy.
Best wishes x

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What a lovely way to describe it. From struggling through many hurdles are amazing children are wonderful gifts. X

[feebee]

Firstly Congratulations on baby number 2'x
I have no direct advice just to say you sound a wonderful Mummy and your little ones are in safe hands x Good luck for the future and there is lots of friendly support on here as always xx much love x

[Button17]

Huge congratulations on your pregnancy.

I have had experience caring for both children and adults with DS on and off for the past 26 years. You are mourning the child you dreamt of and coming to terms with the unexpected, so don't feel guilty and just give yourselves time.

I really recommend following Olli and Cameron on FB. They are gorgeous twins with DS and have an amazing Mummy who is so positive. Good luck and hugs xx

[jemett]

Originally Posted by DisneyMadMummy

Sorry if I'm being to nosey, you can tell me to ≈≈≈≈≈≈ of if you would rather not answer lol but what chromosome disorder does your son have? Mine has one to x

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He has a deletion on one of his 13th chromosome and some unknown additional material attached to the end. It reads as 13q32-34 deletion with additional material.
What does your child have x

[charandcubby]

As others have said I can't think of a more lovely family for this baby to be born into and how lucky this baby is. you will adapt and cope and this life will enrich yours and masons in ways that you probably are not thinking of at the moment. We had a ds baby in my sons baby sensory class and she was the absolute apple of everyone's eye, and we have family friends who have three children all grown up and the eldest was ds, she has leads a completely full and happy life, has her own apartment, works at a garden centre and has the best sense of humour, she's a delight. I hope you get the help and support you need before the birth, and I hope you all finally get off on that trip to Florida next year xx

[DisneyMadMummy]

Originally Posted by jemett

He has a deletion on one of his 13th chromosome and some unknown additional material attached to the end. It reads as 13q32-34 deletion with additional material.
What does your child have x

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He has 8p23.1 duplication syndrome but the geneticist thinks there is more to it then that so wants to investigate further x

[poohsfriend]

Congratulations on your pregnancy. I would just like to agree wholeheartedly with a couple of the other posters here. My son had a high risk of DS but didn't have it - he did have a heart defect and several other issues though. The worst part of it all is not knowing - not knowing what the future will bring and what problems (medically and otherwise) you will have to face. I found pregnancy really hard, we knew he had a heart defect from about 16 weeks of pregnancy and later found out he had a kidney issue too so I was just waiting to see if he had anything else and it was horrid - I had many sleepless nights.
But as PP have said - time passes and although you initially grieve for the baby you thought you would have you also celebrate the baby you do have and get used to a new 'normal' - just a different normal to the one you initially anticipated.
Good luck with the heart scan

[jenn8400]

My ds1 (6yrs) has autism and I have a good friend who has a son with DS they were aware before he was born. He is 11 now and while he has had a few health complications he is the most lovey outgoing kid! Please try not to worry it's one of the best things that has ever happened to me having a child with special needs, it brings you the most amazing love and bond with your baby. Try to relax and enjoy you pregnancy because as I well know life with 2 kids under 3yrs is the most rewarding and tiring thing in the world 😘