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5 Tips on Parenting a Child with Down Syndrome

2018-10-10 by Carrie Aitkenhead

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A Q&A with Parent and Advocate Krista Rowland-Collins

By Carrie Aitkenhead

In honor of Down Syndrome Awareness Month, we talked to Krista Rowland-Collins, who is the parent of a child with Down syndrome, an advocate, and the creator of Adele’s Over the Rainbow Baskets, an organization that helps families warmly welcome their children born with Down syndrome to the world. Krista started the organization a few months after her daughter, Adele, was born with Down syndrome. She noticed that families of babies with Down syndrome heard a lot during the post-natal diagnosis about the challenges their child might face but rarer were simple, positive messages that other families get about bringing a new life into the world. “I wanted to make sure these families heard, ‘Congratulations!’ after their babies were born,” Krista says.

  1. “It’s going to be OK.”


    Hi, Krista! Tell us about yourself.

    My name is Krista Rowland-Collins, and I am a very young-looking 41-year-old! I am married to James Collins. We have two beautiful girls: Brinley is 6, and Adele is 5. This past summer, we decided to expand our family with the addition of Macaroni. He is the sweetest, cutest and most adorable Morkie.

    Brinley and Adele
    Photo courtesy of Krista Rowland-Collins

    Morkie
    Photo courtesy of Krista Rowland-Collins

    What do new parents of children with Down syndrome need to know?
    It’s going to be ok. There is support. There are resources. There is a community filled with amazing individuals who want to provide comfort to new families. Don’t feel that you need to follow every page about Down syndrome and attend every walk or meeting. Do what works for you and your family. Be kind to yourself.
    Adele's Over the Rainbow Basket
    An example of one of Adele’s Over the Rainbow Baskets. Photo courtesy of Krista Rowland-Collins
  2. “Storytelling is one of my go-to parenting tools.”

    How do you help introduce your kid to new environments, routines, and people?

    A social story is great for our children. (Especially recommended for back-to-school and times of big transitions.) Go into the school in June and take pictures of the classroom, coat hooks, library, gym, office, teacher, aide, and playground. Make a book for your child and go over it throughout the summer.

    Brinley in the Woods
    Photo courtesy of Krista Rowland-Collins
  3. “Communication is key!”

    Communication is Key
    Photo by Modern Nest Photography

    How can you be the best advocate for your child with special needs?
    Be present. Be in constant communication with your child’s team. Set up regular meetings. Prior to a new school year, sit down with the principal and discuss what the school will give your child in terms of support. Will your child have one-on-one aide support? How many times a month will your child see a speech pathologist? Physical therapist? Occupational therapist? What does inclusion look like in the school? Is inclusion being in close proximity to their peers, or does it mean that your child is involved in all aspects of learning within the classroom environment? Is there space in the school equipped for therapy, changing diapers (if needed) and a safe place if feeling overstimulated and overwhelmed? Meet with the classroom teacher and be sure to hand in all assessments and notes and share pertinent information, so that your child will have a successful year.

    It’s exhausting some days. I’m not going to lie. There have been tears and anger and frustration. Brinley had been attending her elementary school for two years. We set up a meeting with the principal and coordinator to discuss what programming would look like for Adele. We were told that she would not start the year with one-on-one support and services would be minimal. Adele chokes, falls, and does not understand the consequences of her actions. Her expressive language skills are delayed, therefore she is unable to communicate her wants and needs. She requires somebody to be her voice, her support system while at school. I advocated for her. I told them what she needed in order to succeed. Her needs would not be met at this school.

    We found another school in our community. We talked about our daughter. We were heard. They understood the importance of support and that it’s imperative that Adele starts the year with her own person. There are times when our voices are not heard, but push on. If advocating is difficult for you, ask a family member or somebody from your community to help you with the process. It will work out.

  4. “Open-ended play can help a child with Down syndrome connect with siblings and others.”
    Brinley and Adele Having Tea
    Photo by Modern Nest Photography

    What should parents keep in mind when it comes to playtime for children with Down syndrome?
    Some children with Down syndrome need extra support with how to play. Playing with siblings is a great way to learn! Adele loves Melissa & Doug toys. They are made for our children! She loves Examine & Treat Pet Vet Play Set and the Wooden Doorbell House. She enjoys feeling successful and these toys allow for that, which means she will play with them for extended periods of time. Adele loves hands-on play, lots of movement, and using her imagination. She also loves playing with her sister at recess at school. Brinley’s favorite way to play with Adele is to have tea parties and play with our puppy, Macaroni. They also like to play hide-and-seek, though Brinley notes Adele doesn’t always stay in one place!
  5. “Giving friends, family, caregivers, and educators a ‘Cheat Sheet’ can help them support your child.”

    How else can you help your child with Down syndrome?

    Creating an “About My Child” cheat sheet can go a long way to getting others to think about how they can accommodate your child’s special needs. Here’s an example of what you might include:

    1. Your child’s name and age
    2. Your child’s communication style. For example, “It can be difficult for _______to express thoughts and feelings, so s/he uses some words, basic sign language, and gestures to communicate with others. If you need help understanding ______, please feel free to ask one of us!”
    3. Your child’s favorites. Make it easier for others to connect and find common ground by listing favorite things and topics of conversation.
    4. How Down syndrome affects your child. For example, “It takes _____ a little longer to learn new things. S/he will learn, just at her own pace! S/he started walking at ___ years old because s/he has weaker muscle tone. S/he has some unique physical features (almond eyes, smaller nasal bridge) and that is what makes him/her beautiful and special!”
    5. Favorite resources or articles about Down Syndrome Awareness, such as 5 Ways You Can Support Down Syndrome Awareness Month, which includes links to various organizations and additional materials.
    6. Your contact information and an invitation to call, email, or have a playdate!

To learn more, and to support Krista’s work, follow, like or share…

Adele’s Over the Rainbow Baskets

Instagram: aperfectextrachromosome

Facebook: Adele’s Over the Rainbow Baskets

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Carrie Aitkenhead

Carrie Aitkenhead is a Connecticut State Certified Educator and member of the National Association for the Education of Young Children with fifteen years of experience in multiple areas of education including public school, private school, special education, and outdoor supplementary education. These experiences have shaped a core belief in the necessity of play. Through her work she hopes to promote the value of play and personal connection to support children to develop a sense of imagination, creative empowerment, and self-worth.

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