Congratulations on The Birth of Your New Baby!
Dear Parents,
We hope you find the following letter helpful & informative.
The doctors have told you by now that your new baby has Down Syndrome. Hopefully, they have also given you some basic information about what that will mean to you, your baby, and your family. We, the Delaware County Down Syndrome Interest Group (DCDSIG), hope the information presented on this page will be helpful as you begin the adventure of raising your child.
The feelings that you are having right now are probably intense; we can assure you that you will not always feel as you are feeling now. Yes, life will never again be as it was. Your baby will bring you so many smiles that you will wonder at your early tears. The many happy moments you share will help you forget the depth of your present feelings.
It is hard to be told that your beautiful child has Down Syndrome; and there will be days of incredible sadness, of agonizing decisions, and endless worry. But, there will also be laughter, joy and thousands of little triumphs that will make the difficult times worthwhile.
Many families have stated that talking to parents of children with Down Syndrome has been the most helpful action they have taken. Parents understand feelings, and can answer questions better then anyone else–they have already walked the path that you are just starting. If you are interested in talking to someone please call (610)-544-4025, and we will connect you with another parent.
Savor these first weeks of babyhood; hold and cuddle and get to know this unique little human being. And remember, that first and foremost, this child will need what every other child needs–to be loved, accepted, and valued for being who he or she is.
Most importantly, we are here to speak with you, share our experiences, and have you meet our children. We would be happy to speak with you now or whenever you are ready. We may be strangers at first, but the common link we have is our love for our children. We are ready to support you when you are ready!
We wish you the best!
About Down Syndrome
A person with Trisomy 21, commonly known as Down Syndrome, has one extra chromosome in each of the child’s millions of cells. Instead of 46 chromosomes, he/she has 47. Down Syndrome is the most commonly occurring chromosomal condition, occurring in 1 out of every 691 births. There are more than 400,000 people living with Down Syndrome in the United States. Down Syndrome occurs in all races, ethnic groups, and socio-economic classes. It can happen to anyone!
Because chromosomes and the genetic material they carry play a large part in determining the child’s characteristics, this extra chromosome will effect the child’s life. His/her appearance may be a bit different from other children, he or she may have some unique medical problems and he/she will likely have some degree of cognitive impairment. The severity of any of these problems vary tremendously from child to child. Each child with Down Syndrome is unique with his/her own personality, talents and thoughts. There are few absolutes governing the baby’s destiny; like other children, the child is an individual and will grow to become a distinct personality.
Just Remember:
Beautiful Beginnings Baskets
Beautiful Beginnings baskets are delivered in hopes of bringing joy to families who bring babies with Down syndrome into the world. We create baskets filled with positive and updated information, baby products and community resources to give to families when they feel like they may not know where to turn. We are passionate about making sure new parents know just how amazing their lives are going to be. We offer support and guidance by welcoming them into our wonderful community!
We are able to make our baskets due to generous donations from people in our community and also from DSIG. Due to HIPAA changes, we rely on our members to let us know if you hear of a family who has received a prenatal diagnosis or finds out that their baby has Down syndrome at birth.
If you are interested in donating, here is the updated link to our wish list for items for future baskets. We look forward to providing more families with Beautiful Beginnings! 💙💛
The Creed of Children with Down Syndrome
Below is an inspiring poem, penned by an unknown author, that eloquently describes a life long struggle for children with Down Syndrome.
Â
“My face may be different
But my feelings the same.
I laugh and I cry
And I take pride in my gains.
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above.
To Him I’m no different
His love knows no bounds,
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted,
But this family I’ve chosen
Will help me get started.
For I’m one of the children
So special and few
That came here to learn
The same lessons as you:
That love is acceptance
It must come from the heart,
We all have the same purpose
Though not the same start.
The Lord gave me life
To live and embrace
And I’ll do it as you do
But at my own pace.”
– Author Unknown
Helpful Links
Delaware County Down Syndrome Interest Group links to many web sites created and maintained by other public and/or private organizations. Some of these sites contain medical information . Our linking to such sites does not imply our endorsement of such medical information advice. We do this as a service to our users. The presence of a link is not an endorsement of the site.
Because chromosomes and the genetic material they carry play a large part in determining the child’s characteristics, this extra chromosome will effect the child’s life. His/her appearance may be a bit different from other children, he or she may have some unique medical problems and he/she will likely have some degree of cognitive impairment. The severity of any of these problems vary tremendously from child to child. Each child with Down Syndrome is unique with his/her own personality, talents and thoughts. There are few absolutes governing the baby’s destiny; like other children, the child is an individual and will grow to become a distinct personality.
National/Local Organizations
National Down Syndrome Congress
www.ndsccenter.org
National Down Syndrome Society
www.ndss.org
Trisomy 21 Program at Children’s Hospital of Philadelphia
www.chop.edu
Chester County Down Syndrome Interest Group
www.ccdsig.org
Bucks County Down Syndrome Interest Group
bcdsig.wordpress.com
Rock for CHOP
rockforchop.com
Educational Resources
Inclusion Press
www.inclusion.com
Inclusion Video Series
www.inclusionseries.com
Layered Curriculum (Dr. Kathie Nunley)
www.help4teachers.com
New Horizons for Learning
www.newhorizons.org
Sports and Activity Related
Special Olympics of Delaware County
www.sodelco.org
Advocacy
The ARC of Pennsylvania
www.thearcpa.org
CONNECT Information Services for Early Intervention
HELPLINE: 800-682-7288
Disability Rights Network of Pennsylvania
www.drnpa.org
Education Law Center
www.elc-pa.org
Hispanic United For Exceptional Children, Inc.
www.huneinc.org
The Institute on Disabilities/UAP
www.disabilities.temple.edu
Office For Dispute Resolution
odr-pa.org
Parent Education Network-Pen
www.parentednet.org
Parent Information Center of Delaware
www.picofdel.org
Parent To Parent of Pennsylvania
www.parenttoparent.org
Parents Involved Network
www.mhasp.org
Parent Education and Advocacy Leadership Center
www.pealcenter.org
Pennsylvania BAR Association
www.pabar.org
Pennsylvania Education for All Coalition, Inc (PEAC)
www.paedforall.org
Pennsylvania’s Initiative on Assistive Technology (PIAT)
www.disabilities.temple.edu/programs
Pennsylvania Parents and Caregivers Resource Network (PPCRN)
www.ppcrn.org
Pennsylvania Speech, Language, and Hearing Association
www.psha.org
Pennsylvania Training and Technical Assistance Network (PATTAN)
www.pattan.net
Kids Together Inc
www.kidstogether.org