If you're the parent of a child with Down syndrome, chances are you've gotten quite an education since you first heard that diagnosis. What would you say today to parents who are just getting the news? Tell them about that book that explained everything, that website full of resources, that e-mail group you still lean on, that experience with your child that made you see things differently. Those of us who have been there have important gifts to give those who have not yet done that. Offer your words of wisdom and experience here.
Enjoy Every Moment
- As others have said, she is a baby first . . . love your baby as you would any other baby. Cuddle, sing, rock, dress her in beautiful outfits, count those tiny toes over and over again. Know that it's going to be okay. You will go through every possible emotion about this baby, and you will feel guilty for having those emotions, but we all have, and that's okay too. You will love this baby as you never believed possible.
- —Guest Emma's Mom
New Set of Dreams, Big Set of Dreams
- Don't worry, relax, your child will likely fish with you, ski with you, bike with you, garden with you, travel with you. Your child will make friends, have crushes, date, and txt wy 2 much. Your child may drop three pointers at the buzzer, lift weights, sail, swim relay, run in a touchdown, not as student manager, but as teammate and maybe starter. Your child will likely graduate, go to college, get an apartment, get a job, pay taxes, join the rotary, play on a volleyball team. Your kid may start their own business in graphic arts, data entry, kettle corn sales, photography or whatever rolls their socks up and down. Your kid may play the guitar, record cds, act in theatre, or on tv. You may have to let go of your dreams for a kid, and focus on supporting and growing a beautiful, creative kid with their own dreams. It's going to be a beautiful, difficult ride unfolding, and you're going along for the adventure. Enjoy the sweet baby times, they fly by. Do all the goofy baby things.
Advise for DS parents
- When and if you already know that your baby will be DS, enroll yourself and your baby in a school that will help you and your child succeed when he is ready to attend public school for he or she will will have a better advantage in the long run, next make sure that your teachers in your special school enroll your child into programs that will be there when your child is in middle school and beyond. Here is why, our daughter was placed in a private special school when she was 5 months old, while there we both learned a lot of information about helping her accomplish her goals. When she was in middle school she was picked up by DADS and special services were there for her. When she turned 18, I started getting paid for taking care of her as her caregiver. Become involved in everything that will help your child throughout her lifetime, become an advocate for them too. Enjoy your time with them and you both will become closer. Our daughter has accomplished a lot throughout her life. She is 22 years old.
- Aim high high high-you will be so amazed at the capabilities of our wonderful friends! Forget all the negative medical facts and raise the bar! You will be amazed and enjoy the journey too.
- —Guest Guest laulau
My son with Ds
you may not look like all the other children But you can love far greater then they can! an you only ever want to be loved in return! Beauty does not matter to you? You Anthony have a way of capturing everyones heart&soul In a way no other can or will! I have been loved far greater then I could ever have imagined The depth of your pure love love can never be measured you truly are my greatest blessing!
I am so glad that God has shown me what true love is! An what true beauty is! Beauty lies with in each one of us! an giving you to me to to help you through our journey of life!
Somehow Anthony what I thought was the worst thing imaginable at that moment turned into the greatest journey of my life! I never could understand it in the begining but Anthony you are exactly what my heart an soul needed An who knew you would be the answers to my prayers!??
I love you love Mommy!!
I knew you were to join us you came into the world with alll your family right there!! T
- —Guest Jennifer
- In simple term DS can be concluded as a biological mismatch. In the spiritual world its fate. No god is so "cruel" to bless a new born child with a DS. There is always a reason for it. It is not for us to question the Lord Almighty but to repent and pray the gift of God to be put into good used for the benefit of Human kind.
I would tell a new parent...
- that their baby is a baby first. Get to know your child as your child and the dx second. You will raise your baby just the same, you'll just have therapy appts you weren't expecting! You'll still do all the same things you would with a typical child in helping them learn and thrive and grow. Down syndrome is just something your child has, but not WHO your child is.
There are many wonderful books out there now. Check out Gifts: Mothers Reflect on How Children W/Ds Enrich Their Lives and GiftsII.
Just one of the kids...
- Our daughter is a baby first, and a child with Down Syndrome second. We raise her the same as we raise our other kids: lots of love, firm boundries, and faith in God. She is a beautiful, sensitive, intelligent gift to us all.
- —Guest jacqueline
Join a local support group
- A local support group, such as 21&Co, allows you to meet other parents who have experienced what you are feeling. You will be wowed and amazed at their child's achievements, and determination. You'll meet some great friends, who 'understand'. Above all you'll soon realise how inspiring our children are and magic the future holds.
- —Guest Steve
- Dear All,
I have been recently blessed by a baby girl with DS. My initial respoonse was of uncertainty and grief however with the passage of time i am getting emotionally stronger. Since i can not use a lot of space to cover my comments therefore coming directly to the point that how a DS child can be cured or at least given a good minimum strenght to survive thick and thin of life. I found answer in Holy Quran which is the book ob Almighty Allah or our creator. There are two verses in Holy Quran which has given me strenght. First verse says that there is no disease on Earth which has got no treatment and the second verse says that give your new born breast feeding at least 2 years from birth. My third cure is spiritual which is reciting verses of Holy Quran before your child. In my country i know people who got their cancer cured through listening to recitation of Holy Quran especially Surah Rehman which is one of the most beautiful chapters of the Holy Quran.
All I see Is My Baby
- This is a poem I wrote for my baby boy who has DS. Its to big to fit so this is the link
if you would like to visit my notes page at Down Syndrome Illawarra. Share anything you find on there I dnt mind. You will also find a poem I wrote for my older children who are sometimes forgotten its called Thank You
- —Guest Shirley Bungard
- My Company, The ERGO Baby Carrier, has supplied parents with a baby carrier that is suitable for Down Syndrome babies. Check them out at www.ergobaby.com
We have testimonials that Attachment Parenting helps. A Physical Therapist's or Dr.'s review is recommended.
- —Guest Sydney Seaver
- Acceptance comes in different stages so, just keep that in mind. As you adjust, you will learn to celebrate the wonderful child you have in your life! Please also visit www.downsyndromebutnotout.com
- —Guest Jenny
First & Foremost... a Newborn Babe
- The best advice I received was inadvertently given to me by my husband as he tried to cope with the diagnosis in the first 24 hours after the birth of our identical twins diagnosed at birth with Down syndrome. The morning after their birth he came back to the hospital and said, "I see 2 babies who need to be fed and diapered and loved just like any other baby in here." SOOOO true! Don't worry about the Down syndrome, worry about taking care of your newborn baby. Skip the research and reading all the misinformation out there and focus on bonding with and learning about the individual that is your beautiful and perfectly imperfect (just like every other human being) new baby! Enjoy!
- Treat the child normally, Look at them when you are speaking to them. Introduce them to different activities.
- —Guest Sally Rogow