Parent Profile: Amelia Ramirez on Motherhood and the Blessings of Down Syndrome

Motherhood speaks to the core of what it means to be alive. Just spending three minutes alone with a toddler, can cause a mother to experience a complete range of human emotions including happiness, love, fear, stress, anxiety, sadness, wonder, and utter panic!

We interviewed GiGi’s Playhouse mom, Amelia Ramirez, to get her thoughts on motherhood as it relates to raising a child with Down syndrome. We found that while mothering a child with Down syndrome presents a unique set of emotions and challenges, asking experts for help and seeking the support of individuals who have trekked a similar path can make a world of difference in the way a mom experiences the joys and trials of raising a child with special needs.

Q: What does being a mother mean to you?

A: Being a mother is the biggest blessing! I love to spend time with my children. I love to teach them new things and see how they get excited with new experiences. I love to listen when they talk about how they see things. Listening to why they do things or how they see things helps me have more patience and understanding. They are always teaching me new things and I hope to give them all the tools they need to succeed.

Q: Tell us about each of your children. What are they like?

A: Oscar is 8 years old and he is very smart, caring, loving, and over-protective of his siblings. Emily is 5 years old and is at the stage where she wants to be just like her mom. Emily loves to have her real baby and play with our youngest son, Noah. She is very smart, outspoken, caring, nurturing, dramatic, and full of imagination. Emily loves to teach Noah everything she learns and loves to help him practice the lessons he is assigned for the week. Both Oscar and Emily love to play soccer with Noah. Noah is 2 years old. He was born with Down syndrome and is just such a happy, joyful, playful baby. Noah is starting to go through his terrible two’s which we call “twoties” (cuties) because everything he does (even tantrums) is just so cute!

Q: How did you feel when you first heard about Noah’s Down syndrome diagnosis? How has your perception of Down syndrome changed since?

A: Having a child with Down syndrome has not changed the way we see our children. We treat all 3 children the same and love all of them the same.

When I got the phone call that Noah had a 56% chance of having Down Syndrome, I cried!!!!!!!! I prayed!!!!!!! I asked God to just send me a healthy baby. I did not care if Noah would come with Down syndrome I just asked for him to be healthy. A child with Down syndrome can have many health issues with their heart, kidneys, intestines, eyes, pulmonary system as well as others. In all of the scans, Noah had no markers besides being a small baby.

When Noah was born the room was silent. My husband gave me the baby and asked, “Do you think he has Down syndrome?”

As I was meeting Noah for the first time, it did not even cross my mind so his question caught me by surprise. I looked my husband in the eyes and said, “Yes he does have down syndrome, but he is perfect.”

The nurses asked if I knew about the diagnosis ahead of time. I told them we suspected, but we did not do further testing.

The room felt so much lighter after that. The nurses then began to make comments about how cute he was.

The 3 days in the hospital were really overwhelming because the medical staff did not provide much information on what to do next, where to go or who to call. My daughter Emily benefitted from early intervention (EI) to improve her fine motor skills, so I had the contact information for a developmental therapist named Shannon. I called her during my pregnancy and she told me to call her once Noah was born if he did have Down syndrome. I got on the phone the same day he was born and called Shannon. She gathered a whole team of therapists to evaluate Noah and he started therapy at 5 weeks old. She has provided incredible guidance in our journey!

Having a child with Down syndrome has taught me to slow down and enjoy every moment: every milestone he reaches and every attempt to reach the milestone. Every attempt just gets better and better the more he tries!

My perception of Down syndrome has changed because I did not know how HARD children with Down syndrome work to meet a milestone. It is amazing to see how happy they are no matter what is going on around them.

Q: In what ways has raising a child with Down syndrome changed your life?

A: Raising a child with Down syndrome has changed our life in many ways. Noah has taught us patience, compassion, inclusion and true love! Noah has a busy schedule that includes six types of therapy (Physical Therapy, Occupational Therapy, Speech, Developmental Therapy, Nutrition and Aqua-Therapy), swimming and soccer. We are very dedicated to helping Noah in every way we can.

I had to make the choice between supporting Noah and my career. It was a very hard decision to put my career on hold for a couple of years, but know it’s the best decision.

Noah has taught us the importance of life and health. As a parent with a child with Down syndrome, I worry about his future when I’m not here. I want to teach him to be independent, make his own choices and live a “normal” life.

I’ve spoken with other parents that say their adult children with disabilities have a hard time finding jobs. I want to change that by starting a new project to give people with different abilities job opportunities. We have started a candle company and would like to eventually open a candle shop to help people of all abilities.  

Q: Tell us about a typical day for Noah: What are his likes and dislikes?

A: Noah is an early bird!!! He loves to drop off and pick up his siblings from school because he gets greeted by everyone. Noah usually has either therapy or a class in the morning, then he has lunch, nap, playtime, soccer, or swimming. Noah loves to eat pasta, pizza, tomatoes, blueberries, strawberries, yogurt, applesauce, and, of course, cookies. Noah gets upset or frustrated when he is not understood. He loves to read “Polar Bear, Polar Bear, What do you Hear?” and loves to play with his animal toys.

Q: What milestones are challenging for Noah? How do you overcome the challenges? In what areas is he excelling?

A: Speech is challenging for Noah. We use sign language and body language along with verbal language to help understand what his needs and wants are. Noah is doing so well with motor skills. He loves to explore and play sports.

Q: Tell us about your and Noah’s first experience at GiGi’s Playhouse:

A: Our first experience at GiGi’s was so welcoming. We have met amazing families who have shared their experiences. This helps me tremendously in supporting Noah. GiGi’s has made us feel that even though we have a child with Down syndrome, life is typical. There are no differences between children. Our children will just take a little longer to meet their milestones.  

Q: How has GiGi’s Playhouse helped Noah? 

A: GiGi’s has helped Noah learn sign language and socialize with other people. Noah is able to be in all sorts of environments due to always being exposed to quiet and loud places.

Q: What programs does Noah participate in at GiGi’s? 

A: Noah participates in LMNOP. He loves to use sign language and sign to the songs. He looks forward to seeing his friends and his teacher, Grace.

Q: How has GiGi’s Playhouse helped you as a mom?

A: GiGi’s has helped me so much with my anxiety of the unknown! Knowing it is ok to have these fears and to be able to talk to other parents who are in the same situation makes me feel understood.

Q: What would you like moms who may be struggling with their child’s Down syndrome diagnosis to know? 

A: I would love for moms who are struggling with the diagnosis to know their child will meet milestones. Be patient, have fun and enjoy your children. Time does not stop. Before you know it, that baby is a toddler, child, teen, and then adult. Enjoy and love your baby like you would any other!