Congratulations on the Arrival of Your Baby!

Congratulations on the birth of your precious baby. We wish nothing but the very best for you, your new addition, and your entire family. A new addition to the family is a joyous occasion, but we also understand that it comes with news you may not have anticipated – your beautiful baby has Down syndrome.

Your feelings and emotions at this time are entirely your own, and we respect that. This message shares fundamental information about Down syndrome. However, we do not wish to overwhelm you, as we recognize that you have a lot on your mind right now.

For the time being, we encourage you to take care of yourself, savor every moment with your precious baby, and begin the beautiful journey of getting to know one another. You are not alone, and you are welcomed with open arms into a vast, supportive, and caring community.

This message is based on the helpful resource, The New Parent’s Guide section of “My child has Down syndrome. Now what?” from the National Down Syndrome Congress, one of many useful websites you may consult as your begin your parenthood journey.

The birth of a child is a momentous occasion, filled with questions and expectations. When your child is diagnosed with Down syndrome, those questions may multiply, and the path ahead may seem uncertain. However, at the heart of it all, your primary role remains to love, care for, and support the precious baby in your arms.

Raising a child with Down syndrome comes with various considerations, encompassing medical, social, developmental, and educational aspects. Let’s explore this extraordinary journey and how you can navigate it with love and purpose.

You are Not Alone

A fundamental step on this path is to reach out to your local Down syndrome organization. These organizations can connect you with parents who have gone through similar experiences, experts in the field, and valuable resources. The National Down Syndrome Congress (NDSC) is a vital resource that can educate and empower you in providing the best possible care for your child.

The Road Ahead Will Have It’s Share of Joys and Challenges

To prepare for the unique journey of raising a child with Down syndrome, it’s essential to anticipate challenges while also recognizing the rewards. Expect moments of frustration, but also cherish the joys that parenthood brings, just like any other parent.

Resources for New Parents

Understanding the specific needs of your child and staying informed are key. Here are some valuable resources for new parents from the National Down Syndrome Congress:

1. Down Syndrome: A New Parent’s Guide
   • This guide provides essential information to help you navigate the initial stages of parenting a child with Down syndrome.
2. What Parents Wish They’d Known
   • Learn from the experiences of other parents who have walked a similar path and discover their insights and wisdom.
3. Your Baby and Down Syndrome
   • Gain insights into your baby’s development and how to support them in their early years.
4. Breastfeeding a Baby with Down Syndrome
   • If you choose to breastfeed, this resource offers guidance tailored to your child’s unique needs.
5. Healthcare Guidelines
   • Stay informed about healthcare recommendations and best practices for your child’s well-being.

A Baby is still a Baby

One of the most important things to remember is that your child is, above all, a baby. Cherish the moments of love, cuddles, and connection. Babies, whether they have Down syndrome or not, have similar needs – to be held, nurtured, talked to, and loved. They are precious, cute, and the center of your universe.

Watching Your Language

It’s crucial to use language that emphasizes the person, not the disability. Here are some guidelines for using people-first language:

• A “person with a disability,” not a “disabled person.”
• A “child with autism,” not an “autistic child.”
• Use neutral expressions: A person “with” cerebral palsy, not “afflicted with” cerebral palsy.
• Avoid stigmatizing language: A person “has” Down syndrome, not “suffers from” Down syndrome.

Each person is unique, so refrain from using stereotypes that assume all individuals with Down syndrome are the same. Emphasize their individual strengths, capabilities, and talents.

Navigating the World With a New Baby With Down Syndrome

Here are some practical steps you can take as you embark on this journey:

• Enjoy Your Baby: Play, read, cuddle, and interact with your child. Get to know their likes and dislikes.
• Connect with Other Parents: Join a local parent group or reach out to the NDSC for support and connections.
• Learn More: Explore resources and books to better understand Down syndrome, its characteristics, and potential challenges.
• Early Intervention Programs: Research early intervention programs available in your area to support your child’s development.
• Self-Care: Take care of yourself to be better equipped to care for your child. Nurture your relationships and accept help when offered.
• Healthcare Provider: Find a healthcare provider who is knowledgeable about Down syndrome to ensure your child receives the best care.
• County Resources: Investigate county resources that can provide assistance, information, and connections to schools and community services.
• Grieve if Needed: Grieving is a natural part of the process. It’s okay to experience a range of emotions and eventually adapt to the new reality.

Your Trip to Holland

To help others understand the unique experience of raising a child with Down syndrome, many of us found our center through the popular analogy known as “Welcome to Holland” by Emily Perl Kingsley:

When you plan for a child, it’s like preparing for a trip to Italy. But sometimes, life takes you to Holland instead. Holland may not be what you expected, but it has its own beauty and unique experiences.

Remember that Holland has its own treasures – windmills, tulips, and Rembrandts – which are just as wonderful as what you initially imagined in Italy.

The Best Advice We Received

When Juliette was born, a wise friend who had walked our path told us, “Have the same expectations you would for any child. But realize, your beautiful baby will get there on ‘the scenic route.‘” We worried how Jules would navigate the basics, like walking and talking. She can do both! She has passed a number of milestones already that have delighted us. She is like most kids her age. She has good days and bad days. She can be stubborn. But she can also be the most loving person on the planet. “The System” has many resources that have been helpful to us as she has entered the classroom and continues to grow. Some we have had to fight for. But it’s not that different from our engagement in our son’s life and education. You get out of parenting exactly what you put into it, even though some days it may not feel like it. Hang in there! Do your best and let trust the universe.

The Future is Brighter Than Ever

We know a lot more today about how to prepare a baby for a happy productive life with Down syndrome. The future holds endless possibilities for your child. They can grow into enthusiastic employees, enjoy a fulfilling life, form relationships, and have unique talents and strengths. Although Down syndrome may pose specific challenges, focusing on the positive and celebrating the achievements of your child can make all the difference.

As you embrace this remarkable journey, know that you are not alone. Countless parents have walked this path before you, and many will join you. Together, you can celebrate the joys, support one another through challenges, and create a bright future for your child with Down syndrome.

Stephanie Westerman
Curator – DownSyndromeNation.com
Stephanie (at) DownSyndromeNation.com