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Congratulations, as you are expecting or have recently given birth to your son or daughter.
As parents who have experienced the birth of a baby with Down syndrome we know that this is a time of mixed emotions.
There will be challenges in raising your child, but there will also be many, many joys.
It's normal to be nervous about what lies ahead, but remember that Down syndrome is a condition your baby has, it is not who your baby is.
We hope you find the information in this section useful.
We look forward to meeting you and your new baby.
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| New Parents Guide |
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| View our Guide |
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| Our guide was put together just for new parents.
It provides many key pieces of information including Healthcare Guidelines, Local Resources
Family Experiences and more. Download your copy here
or please call us at 991-1800 or email us at info@odspn.org and we will be happy to mail you a guide.
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| Parent Volunteer Visitation Program |
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| Our organization has a Parent Visitation Committee, which consists of trained parent volunteers, each of whom has a child with Down syndrome.
We are here to talk at any time, whether it is in the hospital, at your own home, or on the phone.
Each volunteer is more than willing to answer questions and offer support.
Please call us at 991 - 1800 or email us at info@odspn.org to schedule a visit.
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| Parent Orientation |
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Register for Next Parent Orientation
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| Our new parent orientation is held twice per year in November and March.
Our two hour presentation helps to explain many of the local resources available to your child,
discusses Early Intervention and provides answers to many commonly asked questions.
Please check back for more information.
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| Suggested Reading for New Parents |
- Babies with Down Syndrome: A New Parents Guide
- Fine Motor Skills in Children with Down Syndrome
- Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals
- A Parents Guide to Down Syndrome: Towards a Brighter Future
- The New Language of Toys: Teaching Communication Skills to Children with Special Needs
- Understanding Down Syndrome: An Introduction for Parents
- Communication Skills in Children with Down Syndrome
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| For more suggested reading visit our recommended reading page |
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| Click here to join us! |
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| Letter to Grandparents |
| For Aunts, Uncles and Other Relatives |
| Ten Commandments for Helping Parents of Children with Special Needs |
| Sign up for our Newsletter |
| Join Now |
| Parents Packet |
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| CONGRATULATIONS upon the birth — or expected birth — of your grandchild, niece or nephew!!! |
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| The birth of a baby is, and should be, a time for celebrating and the feeling of joy.
This little baby may not be as you have dreamed, but please let us assure you that he or she is more like other babies than unlike.
Just like all babies, this child needs the whole family for nurturing, guidance, safe-keeping and, most importantly, love and acceptance.
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| We realize that with the birth of a child with Down syndrome the whole family may have entered into a whole new world
— one that can be confusing and filled with intense emotions at first.
It is our hope that through information and support you will be able to gain an understanding of your feelings,
of the baby's special needs and of the love this child has to offer to everyone in his/her life.
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| We encourage you to learn as much about Down syndrome as you can at this time,
so you can be a strong support to the new parents. But remember to treat this baby as you would any other baby,
because infants with Down syndrome are babies first and foremost.
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| If you would like to request an information packet for yourself, please inquire at 402-991-1800 or send us an email at info@odspn.org. |
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| Congratulations, again! Call us anytime with questions or just to talk. |
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| By Michele Stiefel |
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| I. |
Do not avoid talking about our child with us. Do ask how he is doing.
We may not answer much in the beginning — or we may spill our guts!
Either way, we remember those who asked and can't seem to forget those who didn't.
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| II. |
Touch us; touch our child. A hug, a hand on an arm, a look into our eyes lets us know that you care.
A gentle caress on a child's cheek or holding a hand makes us feel "normal."
We feel very alone and different in the beginning.
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| III. |
Don't tell us how we should or shouldn't feel!
We feel what we feel and that's that! In the early days and months,
we are struggling with raw emotion that is usually right near the surface.
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| IV. |
Don't say, "God only gives us as much as we can handle!"
We are just trying to survive from one day to the next, especially in the beginning.
What an additional load to put on someone who often doesn't feel like he or she is handling anything well at all!
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| V. |
Don't say, "I admire you" or "You are so noble."
Unless the parents willingly went out to adopt a child with special needs, we didn't want it to happen!
We don't feel noble. At times we even feel trapped!
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| VI. |
Do offer to help. Come and sit with the child so we can take a much needed break.
Cook a meal or two and deliver them. Offer to take the siblings out for ice cream or pizza.
Tell us that you are just a phone call away if we need anything — and then call us back to see how things are going.
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| VII. |
Be patient with us. It is very hard to work through our grief.
In the beginning, all we can see are the things that our child can't or will not be able to do.
If we have always been independent or overachievers ourselves, it may be hard for us to accept your help right away.
Please persevere; eventually we will be ready to accept your help.
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| VIII. |
Be sure to acknowledge the sibling of the special needs child.
In the aftermath of a diagnosis, etc., the sibling can get lost in the turmoil.
If you go to visit, take something special for the brother or sister, too.
Be sure to say hello to them.
Talk with them before you make a fuss over the baby.
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| IX. |
Please don't stare. If our child doesn't look "normal" or acts differently, we are very aware of it.
In fact, that's all we can see at first.
Find something positive to say — something as simple as "What beautiful eyes!" can be music to our ears.
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| X. |
Remember, no matter what kind of disability our child has, he is still a child.
He has a need to be loved and accepted. He has a need to be happy and to belong.
He needs hugs and laughter, music and friends. He needs you — and so do we!
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| We have received many e-mails from Aunts and Uncles of children with Down syndrome
who are trying to get more information about the new child in their family.
We can not stress enough how important it is for family to support the new parents at this time.
This is a frightening time for the new parents and they often wonder how their family will treat the new baby.
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| Showing how much you love them and their new baby will help to alleviate these fears; pick up the baby, fuss over the baby, play with the baby.
Sometimes you may not know the right thing to say, or what you say is in fact the wrong thing. We would like to give some suggestions about what not to say and what to say.
The following suggestions are based upon the input of many parents of children with Down syndrome.
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| These are the things that parents have said really upset or angered them: |
- "I'm sorry" or any form of pity.
Pity is not what new parents want or need.
What they need is love and acceptance of their new baby.
- "God gives special parents special children" or any variation.
The new parents probably don't feel very special right now. Also, some parents may be a little mad at God.
Trying to make them feel better with words like these might be appreciated by some parents and not by others. It is best to avoid this.
- "They're such loving children."
This is a stereotype of children with Down syndrome and demonstrates
that you really don't know much about Down syndrome.
- "Do they know how serious it is?" or any variation.
Again, this is a demonstration of a lack of knowledge about Down syndrome. Some parents may be angry and want to reply with,
"How serious is it? Well, every single cell in his body has an extra chromosome — is that serious enough?"
- "You are handling this better than I could."
This is an invitation for the new parents to say something like, "No, you would be wonderful." Suddenly,
the conversation has switched to you instead of the parents and their new baby.
Plus, you don't really know how the new parents are handling it, do you?
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| These are the things parents have found comforting or made them feel good: |
- "Congratulations."
They just had a baby! What better response to show that you love them and their baby than to say congratulations.
It made us feel like 'normal' parents when someone said that to us.
If the hospital allows it, a bottle of champagne could be greatly appreciated.
- "He/She looks just like you."
The baby probably does look like someone in the family. All of the baby's genes are from the family.
My son looked exactly like my daughter did when she was just born.
- Friends and family who actually 'did' something like read about the disability (or find information on the web!).
This really means something to the new parents. It shows love and concern for the baby.
The day after we told Mikey's uncle about Mikey having Down syndrome,
he came to visit us with a handful of papers dealing with Down syndrome he had gotten from the web.
That showed us that he really cared.
- Offer to baby-sit.
It is a fear of the new parents that their family will not accept the new baby. By saying something like,
"Well, when are you going to let me baby-sit?" you are showing the new parents that you want to be part of the baby's life.
This will be a great relief to them.
- "He/She will do fine."
The new parents are probably pretty worried. They might not know much about
Down syndrome and they may be concerned about possible medical problems.
Having a positive attitude will rub off on them. They don't need pessimism or negativity from their loved ones.
- "We'll all learn from him/her."
This is another good way to show that you intend on being part of their lives. After all,
how can you learn from their new baby if you are ashamed of him/her?
Their new child will be an opportunity to learn about love, acceptance, and respect for the disabled.
- "We will always be here to help."
Another very good way to show that you are going to be there.
Let the new parents know that you intend on being part of their lives.
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