What’s It Like Raising a Child With Down Syndrome in the United States

This blog post is part of our “Down Syndrome stories from around the world” blog series. Be sure to check it out!

Hello from the United States!

1. What Country do you live in?

United States

2. How many children do you have and what are their ages?

• Noah (our son with Down syndrome) – 7
• Jaxten – 3
• Koen – 8 weeks old

3. Do you have a website / Instagram / Facebook page?

• Noah’s Dad
• Noah’s Dad Facebook
• Noah’s Dad Instagram

4. What was your reaction when you found out your child had Down syndrome?

We were shocked, excited and saddened all at once. I will say my initial response was breaking into tears thinking about all the medical things that could be going on with Noah, I was scared for what might await him. We went through three phases of grief, the first grieving the loss of a child we envisioned, followed by grief for the changes this meant for our family and then grief for the challenges we knew Noah would face. While we may have been grieving we were also falling in love with our son.  After the first few weeks, our grief was subsiding and we wondered why we were so sad. Noah’s life was something to be celebrated and we wanted to change the world for him.

5. Tell us about the birth of your child with Down syndrome.

A preface to this story is to know that I’m a pediatrician, I’ve been there when children are born and know exactly how to diagnose Down syndrome. Noah was born by c-section after I failed an induction. When Noah was born I do remember there being silence in the room, which is not a common reaction when a child is born. My husband got to go look at him, and he had no idea what was going on with Noah. They never placed Noah in my arms after he was born and I didn’t get a good look at him. My husband got to hold him briefly but then they took him to the nursery to be observed. While in recovery, I started to see pictures of Noah and my mind started to wonder…does my child have Down syndrome? (I noticed some of the characteristics of Down syndrome.) When it was time to go to my room, they flew by the nursery. They didn’t even hold up Noah so that I could really see him and spent about 10 seconds by the window before moving on. We then started to wait. I knew we were waiting longer than normal and that made me worry. I remember wanting to have everyone leave the room to ask my best friend, who is also a pediatrician, if she thought that Noah had Down syndrome.

Finally at 10:30 at night, 4 hours after Noah’s birth, our pediatrician who is also a friend walked in the door and my heart sunk.  With a smile and reassurance, she stated that Noah had features consistent with trisomy 21. I immediately clutched by heart with tears streaming down my face and wanted to know if his heart was ok, knowing that 50% of children have heart defects.  She stated that he was doing great. She then had to clarify with the rest of the room which included my and Rick’s immediate family what trisomy 21 meant. One thing we didn’t know until later is that there was randomly a geneticist in the nursery that evening who was able to look at Noah and confirm everyone’s suspicions. She was actually in the elevator while we were going up to my room and she told me congratulations on my baby. I later got to speak to her on another matter where she fessed up to being in the elevator with me and knowing that my child had Down syndrome. I asked her why she didn’t say anything and she told me it wasn’t her place since I had no idea who she was. But that conversation means a lot looking back at it today.

Our pediatrician left before they brought in Noah, they had waited until she could tell me before they wanted me to see him.  I get it, diagnosing your own child doesn’t sound like a fun time. I remember thinking before they brought him in that the only thing I want him to feel from me was love, I refused to cry when I held my son for the first time. It was a precious moment full of emotions I never thought I would feel for the birth of my son.

You can read my husband’s version of Noah’s birth story, here.

6. What was the reaction of the Doctor when they told you your child had Down syndrome? What would you tell your OB/GYN if you had a chance to talk with them today?

Our pediatrician did a great job at telling us about Noah, especially considering we were likely the first family she had to do this with (she is two years ahead of me in training, so had not been in practice for very long). She also continues to be a huge support and encourager, she helps us sort through the medical concerns and lets me be a mom rather than his doctor.

Our OB had a more difficult time and she is part of the reason we do what we do as advocates for Noah. I didn’t see her again that evening after she walked out of the OR. She did get in contact with our pediatrician and voiced her concern that something was going down (couldn’t help myself with that pun).  The next morning she came into our room and the first thing out of her mouth was “I’m so sorry.”  She was sorry she missed the diagnosis, but I think she was also sorry that our son had Down syndrome. She then put an antidepressant on my med list that I had to deny each time a nurse came in and saw me crying. They would ask me if I wanted that other medication.I knew my reaction was normal, and one reason I knew that was thanks to other bloggers like Kelly Hampton who had shared their stories and reactions.

What I would want this OB to know now is that I get it. The majority of our profession would say the same thing, the majority of the world says the same thing. I almost want to thank her for helping us see our purpose in changing the way the world sees our children, to see that their lives are of value. We receive no training on how to deliver a diagnosis of Down syndrome in the best way, and we likely don’t know someone personally outside of limited patient interaction who has Down syndrome. We don’t realize the addition of these children will drastically change a family and most likely only for the better. We don’t know about the studies that show people with Down syndrome love their life and that their families thrive. If you are an OB/GYN please read this post on the right way to deliver a Down syndrome diagnosis.

7. What was the reaction of your family and friends when you told them your child had Down syndrome?

I would say that we had an amazing response from friends and family. (You can read how we told our friends here.) I think my family was initially in shock and didn’t know what it meant to have Down syndrome. They grieved with us but also were there to support Noah in any way they could. My dad at one point said that he didn’t think he would be able to bond with Noah…I’m fairly certain he may be the favorite grandchild now.

One of my favorite blog posts we wrote was spoiler alert our son has Down syndrome, it helped announce to everyone the birth of our son. I think it helped break the ice for people to feel comfortable talking to us and celebrating Noah.  It is hard to know what to say, and I think the majority of our friends got it right and if not they figured it out very quickly.

8. What unique qualities do you love about your child?

Noah is full of life. I think he brings out the best in others. He loves to be the center of attention and his new favorite phrase is “I talk”. He is compassionate and always gives a hug to those who appear sad. People love to be around him! You can read about some of the milestones he has already met.

9. What sort of things does your child like to do?

Noah’s current favorite activity is to go to the movies and have popcorn and an ICEE. He also enjoys bowling, playing at parks, roller coasters, swimming, and dancing! We are very thankful that a nearby swimming school has an interest in teaching those with special needs how to swim. This winter he is signed up for his first performing arts class specifically for kids with Down syndrome which I think he is going to love and will likely be only the beginning of his theatrical performances.  At home, he enjoys playing with his cars and small figures and playsets (think imaginextTop 10 Christmas Gift Ideas For A Baby Born With Down Syndrome | 2017) the most. We see his imagination played out on our floor as he sets up scenes with his toys. We have a trampoline at home as well which is a huge hit in our house.

10. What does an average day look like for your child / your family?

While we wished we woke up earlier, we tend to wake up with just enough time to get Noah to school. We are lucky to live in a suburb of our city and Noah’s school is within walking distance. They don’t even offer bus services to his school. Noah wakes up and eats breakfast while watching a tv show usually on Disney Junior. His favorite breakfast is waffles with jelly and a banana. He then tries to put on about 5 outfits before finding the right one for the day. He also tries to sneak a few toys into his backpack before we head out the door. While he is doing this, I’m making his lunch and getting his stuff ready for the day.

We try our best to get out the door with ample time to get to school, but we are rushing most days. His dad takes him to school and then heads to work. Noah is at school from 7:50-3. Once he leaves I work on getting the other kids ready.  Currently, I’m on maternity leave with our newborn, but will soon return to work. I will take the other two to daycare and head to work by 9. One true blessing of my job is that I do get to take care of kiddos with Down syndrome in addition to all my other patients. Depending on the day Noah is picked up by either me, his dad or a babysitter. One afternoon he goes to speech therapy and another afternoon he does his swim class.

The rest of the week he comes home to play.  We don’t do a lot of homework at our house. His dad and I are usually home by 6. We like to run, so one of us usually ends up going for a run while the other entertains the kiddos or starts dinner. After dinner on good days, our kiddos take baths, brush their teeth, we read a story, pray as a family and then fall instantly asleep by 8. We rarely have good days. Our kids are the kings of bedtime procrastination. Once they are asleep, Rick and I usually hang out on the couch and very commonly fall asleep there before making it to our beds.

11. Is there support in your area for families raising a child with Down syndrome? If so, what kinds?

We are blessed to live in an area with local support for families who have children with Down Syndrome. The Down Syndrome Guild of Dallas provides new parent meetings, conferences on interesting topics such as education, potty training, and financial planning as well as activities for all ages including the Buddy Walk, mommy and me classes, going to baseball games and the theater class we are so excited about just to name a few. Through this larger organization, we were actually able to form a smaller group of families who have children with DS close in age. We started out having monthly play groups but as we have gotten older we haven’t needed to meet as often. That group has a facebook page as well where we can ask very specific questions and keep up with how everyone is doing.

By the way, if you’re looking for an online group to be a part of, be sure to check out our Facebook page for parents of children born with Down syndrome.

12. Are their therapies available for a person with Down syndrome in your country, if so, what services are available? Tell us about what therapy looks like for your child.

The United States believes in early intervention for children with Down syndrome.  The state provides services for ages 0-3 for children who qualify, with DS being an automatic qualifier.  It is called something different in each state and in Texas it is called Early Childhood Intervention (ECI).  These services are usually provided either at home or the daycare where the child attends. There is a local provider who is contracted by the state to provide the services including physical, occupational and speech therapy.  Physical therapy is to work on gross motor skills which include rolling, sitting, crawling, walking and jumping. Occupational therapy is for fine motor skills which can include activities needed for daily living, using his hands for grasping and then eventually handwriting.  Speech includes both feeding and talking.  Another option is to do private therapy which is done at a clinic setting and can include all three of those services as well.

At age 3 the local school district takes over provided services for these children.  They are assessed by the school and offered a preschool program as well as any therapy they qualify for.  Noah started doing occupational therapy at just 3 weeks of age.  For his first 6 months he went just once per month and his therapist gave us activities to work on at home.  he had some feeding issues the first few months of his life so we saw a speech therapist who specialized in feeding during this time as well.  At 6 months he had finished feeding therapy but he started to work on sitting and so we began physical therapy in addition to occupational therapy.  When Noah was 18 months old we were doing 2 sessions of physical and occupational therapy per week in addition to 1 speech therapy session per week.  By three we graduated from physical therapy as Noah was walking and going upstairs, but continued doing occupational and speech therapy once per week. We continued that until Noah started kindergarten where we dropped private occupational therapy as it was offered by the school.  He also qualifies for speech therapy at school and we continue his private speech therapy once per week.

13. What does education look like for a person with Down syndrome in your country?

Starting at 3 the states begins to offer educational opportunities for our children.  You can enroll your children in your local school and then in Texas they can attend the Preschool Program for Children with Disabilities (PPCD).  This is called something different in each state as well.  At this point, you have your first Admission, Review or Dismissal (ARD) meeting where your child has an Individualized Educational Plan (IEP) developed for them.  We create goals based on their skills and what we think they need to work on.  These goals are monitored during the year for progress.  An ARD is held each year and a new IEP is provided.  Another option is to skip PPCD and do private preschool prior to starting kindergarten.  Noah was in private preschool from age 2-5.  he started PPCD at age 4, but still continued at his preschool as PPCD is only about 3 hours.  He would ride the bus from his preschool to PPCD and then come back.  Kindergarten starts once a child is 5 and is typically full day now.  The US has excellent laws in place to protect a child with a disability and give them a right to an education.  These are found in the IDEA act.  The best part about these laws is that they require that a child with a disability be in the least restrictive environment.  This is the law the supports inclusion and for our children to be educated right alongside their peers in their neighborhood school.  I would say despite this law families still find it very hard to get their children fully included.  We will write more about our experience but we had to fight a bit to keep Noah at his local school when he first started.  Things have only gotten better since then at our school and they are doing a great job.  More than half of Noah’s day is spent with his peers.  He has an aide most of the time he is in the general education classroom, but does spend 30% of his day on is own with his peers.  He gets pulled out to the resource room which is a type of special education where they work on more specific goals for reading and math as well as other goals we create in his IEP, but he also gets to work on these goals with his peers in class.  Children progress from elementary, to middle and then high school.  They are typically 18 when they graduate from high school in the 12th grade.  Children with disabilities have programs offered to them by the school until they turn 21 which can help with job skills and other life skills.   In the last several years, several colleges have started to offer programs for young adults who have intellectual disabilities so they can get the college experience as well as continue their education.  This was previously unheard of.  While we are using public education, but you can also choose private or home school options.

14. What is the best thing about raising a child with Down syndrome in your country?

Opportunity!  I think the opportunities will only continue to grow for our children here.  Inclusion in the classroom is the start of children be included throughout their entire life.  We hear about exciting stories for people with Down syndrome every day, like getting into college, getting their first job, or even their license.  They are living independently or in supported homes with their friends.  We have several local businesses that are specifically hiring people with disabilities.  We still have battles to fight, but the opportunity for Noah is just beginning.

15. What is something you would like to change about raising a child with Down syndrome in your country?

I continue to want to see more adult opportunities for people with intellectual disabilities. I think that once they are out of high school it is hard to maintain community and friendships. I think we can often look at someone with a disability as a service project rather than finding their true value and worth and helping them find purpose in the work that they do.

Also, abortion is a huge tragedy in our country, with many mothers of children prenatally diagnosed with Down syndrome, choosing to terminate their pregnancy.

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