How to Successfully Take Care of a Child with Down Syndrome
Families, like their members, change over time, and neurodiverse families like yours and mine are no different.
I grew up with my brother, Mikey, who has Down syndrome. We’re close in age, and his care has always been a part of my life, but as our parents got older, my role shifted from a sibling to a primary caretaker. When my father passed away in October of 2021, Mikey came to live with me for the next few months. My role changed from playful sibling to supportive caregiver in real time.
Perhaps you’re processing a new diagnosis right now. Maybe you’re looking for an answer to the question that sits at the top of the list of a million other questions: How do I take care of my child with Down syndrome?
You want to keep your child safe and give them everything they need. But there are more questions than answers staring you down. I get it. Of course, there is no easy answer to all of the quandaries you face. That said, as a person who grew up alongside a child (then adult) with Down syndrome, I’m hoping that sharing some of my experiences, tips, and best practices will help
I’ve spent my whole life in the neurodiverse community, and I’ve played different roles there. From sister, to professional, to parent. Below I’m sharing what I’ve learned along the way about how to take care of a loved one with Down syndrome.
First, I want to plainly state: There is not a one-size-fits-all approach caring for individuals with Downs syndrome. Each family and individual are unique. My experiences are my own and may not match yours. My advice is life-tested and given through my lens as a behavior professional. But it may not be the best advice for you. As with everything in parenting: trust your gut. This is not a prescription, just a perspective.
In this article:
How will my Down syndrome child’s development be different from neurotypical children?
How can I best help a child with Down syndrome start talking and walking?
How can I best help my child with Down syndrome prepare to start school?
How can parents or caregivers best help their child with Down syndrome succeed in school?
What should I do if my child experiences bullying or teasing at school?
If my child is having difficulty making friends at school, how can I help?
How can I best support my child with Down syndrome as they go through puberty?
Will my child with Down syndrome be able to live independently as an adult?
What are the needs of a child with Down syndrome?
There are many logistical answers to this question, and I’ve listed some below that may be helpful. But beneath the logistics there’s an emotional answer. One that isn’t always easy, but it is very simple: Love and patience are the key to everything else.
This idea was foundational in our home growing up. Patience takes time to develop, but love is there from the start. It’s what makes all of the logistical challenges possible to overcome.
My brother Mikey was born with two holes in his heart. At thirteen months he could still barely hold his head up, meaning he wasn’t strong enough yet to undergo the open-heart surgery he desperately needed. His physical needs during the first months of his life were extensive, and making sure he got strong enough for the surgery was my parents’ main focus.
Around 50% of individuals with Down syndrome have some sort of congenital heart condition that requires medical intervention. The costs for medical care far exceed those babies born without Down syndrome. Also, this usually means more doctor’s visits, more therapists, more uncertainty, and the child’s own distinct developmental pathways.
Needs for individuals with Down syndrome change over time, just like they do for the rest of us. You’ll learn about your child’s specific needs along the way. Early intervention is key. Ultimately, their needs are the same as any other child: friendship, connection, opportunity and expansion, a sense of self, relaxation, play and exploration.
If there’s one message I want you to take away today, it’s this: Our needs are more similar than they are different.
How will my Down syndrome child’s development be different from neurotypical children?
Generally speaking, children with Down syndrome often hit their developmental milestones later than their neurotypical peers. This can be dependent on several factors and is often overwhelming when you are at the beginning of the long road ahead.
The truth is, you won’t know how slow or fast your child is developing until they are in the midst of growing. For now, I’ll share how Mikey navigated some basic milestones.
Because of his heart defect, Mikey was behind on nearly all of his developmental milestones like lifting his head, smiling, sitting up alone, crawling and standing. Once he was strong enough for surgery and the procedure was behind us, we could turn our attention to those other areas of growth he needed support in. As a family we learned early on that we just had to keep putting one foot in front of the other when it came to helping Mikey thrive.
Once my brother was past the hurdle of surgery and his body began a growth trajectory, we discovered that Mikey had textural issues and wasn’t ready for solid foods for the first several years of his life. We had to get creative with baby purees to ensure he received the nutrients he needed and to broaden his palette to begin to accept other foods. It took some out-of-the-box thinking but eventually he got the hang of it and it became a mark of celebration and success.
Verbal and communicative skills are another place your child with Down syndrome is likely to experience some challenges. When these skills are impaired, it can have a profound impact on both physical and mental health. For Mikey these areas were particularly challenging.
He has always been on his own path, determined to learn only when he was intrinsically motivated. His verbal and communicative skills were particularly impacted by his early development and he never gained access to what we would think of as intelligible speech. Despite the professional guidance, formal assessments, diagnostic evaluations, and lifelong commitment by all of his cheerleaders, Mikey learned to communicate in his own special way.
Even today, we don’t hold conversations using typical language or complex words. We communicate through gestures and the language he created himself.
Can a baby with Down syndrome breastfeed?
Absolutely. As with all things, breastfeeding comes down to an individual choice and an array of mother and baby health factors. For all children there are important benefits from breastfeeding for both mother and child.
In Mikey’s case, his body was working overtime due to his heart condition and feeding was a major concern. He needed to eat every three hours so he could become strong enough for surgery. Due to the high demand, my mom had no other choice but to supplement breastmilk with nutrient rich formula to make sure he got enough.
You may find that this is the first opportunity to seek out guidance from professionals. Which can feel scary and overwhelming. As a new parent, you are likely sleep-deprived, anxious, and trying to soak up all the learning you can so that you can give your child what they need. This is the time to lean on the support of your family and friends and look to professionals to help you find your way.
What associated health problems should I look out for?
There are a number of associated health concerns for individuals with Down syndrome. Compromised immunity and obesity are among the most typical.
Mikey’s biggest health concern growing up was his compromised immune system; he was so quick to catch colds. He would get hit harder and his symptoms lasted longer. A cold that lasted 24 hours with me could put Mikey out of school for a week.
He’s also been at risk most of his life for obesity due to thyroid disease, so it was important to teach him early healthy eating habits and to incorporate exercise into his daily routines.
Down syndrome individuals may also experience health struggles such as:
Mild to moderate cognitive impairment.
Issues with language and memory. Dementia is prevalent for Down syndrome adults as they get older.
Spinal issues. Children with Down syndrome are at an increased risk of a condition called Atlantoaxial Instability , a compression of the spinal cord that causes nerve damage. It’s a factor doctors pay close attention to when weighing whether it’s safe for Down syndrome children to participate in accident-prone activities like gymnastics and ice skating.
Poor dental health.
Hearing and vision loss.
An awkward gait that leads to longer term hip problems.
This list is not exhaustive and can feel very overwhelming. So now is probably a good time to share perhaps the most helpful advice I can give you when it comes to caring for a child with Down syndrome:
Take it one step at a time.
I know that might sound impossible. But when you feel yourself getting overwhelmed (which will likely happen a lot), take a breath. Close the computer. Put down your phone. Lean on your family/friends to get the support you need. Then get back to the research and calls and all the things later, when you’ve refilled your cup.
What's a good daily routine for a child with Down syndrome?
You’ve might already know how important routines are for children . For kids with Down syndrome, it is even more critical. Irregular routines and sudden changes can lead to behavior problems and promote a dependence on others to support them through throughout their day.
Growing up, Mikey’s daily schedule was simple and clear. Even though it took time to get to a place where he could follow every step, we knew that consistency and persistence were critical to his development.
With help, he woke up, made the bed, used the bathroom, washed his hands, brushed his teeth, showered, got dressed, and had breakfast before getting on the bus for school. There were so many self-help skills he needed to begin functioning independently, and building a solid base with a morning routine helped support him remembering those skills throughout the day. Mikey’s educational team taught my parents how to chain skills together which ultimately was the secret to his success.
Now, Michael lives outside our home, but he comes to stay on weekends, not unlike a college student. We pick him up on Friday, and if the schedule changes to Saturday morning, no matter how much we prepare him, he will still have his bags packed and be waiting for us at the same time on Friday. We know and understand how much he depends on those schedules and routines.
When it comes to routines, consistency is the cornerstone and the routine itself is the brick and mortar. Letting your child participate in creating their schedule also gives them a sense of ownership over their own daily life which helps build a greater sense of agency. Here are some ways to get started building better routines that stick:
Start small. Pick a specific time of day and string together small behaviors into a clear routine. For example: Coming home from school looks like, walking through the door, taking off shoes, putting backpack on hook, washing hands. Let your child know these are the four things are expected to do once they get out of the car.
Don’t give too many instructions at once. Pay attention to how many instructions your child and reasonably follow at once. Keep in mind that memory in children with Down syndrome can be challenging.
Use visual reminders such as checklists, pictures, and 3D mini charts.
Routines that stick are the ones that are consistent and naturally functional. Make sure any new routines fit reasonably into your actual schedule.
How can I best help my child with Down syndrome start talking and walking?
Early intervention might seem like an easy answer, but what it looks like varies between families. Down syndrome isn’t one size fits all, and the intervention one person requires might not fit the next. But support is available and can be individualized, and in fact, should be. Understanding what support your child needs is a good first step toward finding it.
Remember that you are not expected to know all of the answers. Your pediatrician is a good place to start but undoubtedly won’t be the last. If they don’t have answers (and they often won’t) as for referrals of where to go next. Don’t be afraid to get different opinions. Being informed can help you make the decisions that are best for your family. This will mean a lot of information-gathering. Keep a binder to hold resources, doctor logs, etc.
Mikey required a lot of support from his doctors and therapists from the beginning to learn the language and movement skills he needed. He never found a primary modality for effective communication of his complex thoughts, instead he found his own way to interpret sounds and use gestures.
He also needed physical therapy early on to work on core growth areas including movement. For most of his childhood he continued to receive physical and occupational therapy to meet developmental milestones, which is characteristic of children with Down syndrome.
His motor path, like his communication, has always been entirely his own, and it required early intervention with substantial communication between his doctors and therapists to provide realistic goals and support in reaching them.
There are so many resources available to support language and growth development now that Mikey didn’t have access to when he was growing up. Now we have augmentative communication where significant language options are available and assistive technology to support growth.
It’s a learning curve, and not an easy one, but the tools keep improving.
How should you talk to a child with Down syndrome?
The answer is simple, but its long-term effects are monumental. Talk to a child with Down syndrome the same way you would any other: with respect for their dignity and encouraging their sense of autonomy.
Respect can look like giving them your full attention and really hearing what they have to say. Dignity means seeing them as an equal and an individual. Autonomy is remembering that they have the right to make their own decisions.
We all want the same thing for our children: to build their personal authority, to promote their sense of agency over their own lives, and to instill in them a sense of self-determination ahead of future responsibility.
Letting a Down syndrome child be seen and heard as their own person, asking them questions and involving them in their own care is a key way to help them build independence.
In practical terms this can mean listening to them and encouraging them to set their own goals and plan toward their own future.
The way we talk to children about their own neurodiversity is also unbelievably important. I’ve heard many Down syndrome individuals say they want to be neurotypical. If you love someone with Down syndrome and they express those feelings to you, don’t diminish their words.
Instead, ask questions and offer support. Down syndrome individuals have the right to their own feelings about their genetics. That’s a natural part of any individual becoming who they are and navigating the world with their own unique perspective. It’s all part of the process.
We can be honest in acknowledging, “Yes, this is hard,” while also providing loving support. They get to determine for themselves who they are and what their Down syndrome means to them.
How can I best help my child with Down syndrome prepare to start school?
Classrooms are for learning academics, of course, but school is also about so much more. It’s a place to build relationships, develop play skills, explore likes and dislikes, practice rule-based behavior, and the list goes on.
Ultimately school is a place where children develop a sense of self and begin to find a path toward the kind of life they want to lead. It is a place to explore, learn about new concepts, and share ideas.
With that perspective, it’s easy to put pressure on your child’s school experience from the beginning. As with all things, I try to remember that it’s a process. It takes time to evaluate your child’s classroom needs and figure out which interventions and activities will best support their growth. There is time to let the process unfold.
The best thing you can do early is to create an environment where your child can celebrate successes and take challenges in stride. Memory, fatigue, and language can be barriers for Down syndrome students, but they can also be opportunities for resilience.
Knowing how your child learns best and putting the best tools and support in place lifts them up and positions them for success.
There will be corners and curves along the path of your child’s learning, and being able to move with them is crucial as you provide support along the way. As with so much of parenting, they are looking to you to model how to experience the world with all of its joys and challenges.
How can parents or caregivers best help their child with Down syndrome succeed in school?
Repetition and at-home application can create a sense of continuity that supports your child’s classroom success. Being in close touch with your child’s education team and checking in regularly on their Individualized Education Plan is critical as their strengths and challenges continue to evolve. Accommodations and support have to evolve with them.
If they’re struggling with math skills, bring decibels into your daily life. Go to the grocery store, let them pick out ingredients for a favorite snack and calculate the cost using dollars and cents while you wait for the cashier to ring it up.
A lot of academic concepts involve memory which can be a challenge for Down syndrome learners. Repetition of applied concepts provides extra support through practice.
Down syndrome learners might have motor barriers with writing and fatigue from the cognitive challenges of processing new information. Get creative with supporting your child’s learning and don’t worry if it doesn’t look like their peers.
The rest of the class might be doing 30 different math problems on a single sheet. Move around the house and find 10 different practical applications to work on the same skill. This can teach the relevance and act as the glue in the child’s working memory.
The point is not how they learn it, but that they learn it and can hold onto new concepts moving forward. Preparing them for the information they need to receive supports their growth both inside and outside the classroom.
The truth is, this simple tactic of asking, “What is the practical application of this skills, and how will your child use it in the future?” is such a helpful way to get any child more interested in learning. That little bit of reverse engineering and creativity can make it fun. As a bonus, they are more likely to remember the skills they are using in their daily lives.
What should I do if my child experiences bullying or teasing at school?
Bullying is a common and legitimate concern for neurodiverse families like ours. In my professional life, I often have parents asking these questions:
Will my child be treated differently?
Will my child be discriminated against?
Will my child be taken advantage of?
My parents had the same worries. When Mikey was a child, he spent most of his time with one of us, so it was easier to look out for him. We didn’t have to worry about bullying when one of us was always there to keep watch.
Once he was a teenager, though, that got more complicated. We couldn’t always be with him every moment. Just like the time we went to the pool at the YMCA. He couldn’t follow my mom into the women’s room at the YMCA so he had to pass through the men’s locker room alone to get there. Suddenly he was in public spaces alone, and we had to prepare him for new unknowns. What happens if he gets lost? What is someone approaches him? So many thoughts passed through our head.
We helped him practice appropriate behavior by contriving scenarios, simulations of later moments when we knew we couldn’t be there ourselves. We had to put him in situations where he interacted with new people and managed new circumstances using the skills he’d been practicing with us.
Most importantly, we had to know our community well. We didn’t raise Mikey on our own but within a supportive network of friends and neighbors who knew and loved Mikey.
Questions about how our loved ones will be received by the world keep us up at night. Ultimately, each family will know the right approach for their loved one. That said, there are two universal directives that are a good place to start:
Know your community. Know its leaders. Facilitate relationships between your child and the people they can feel safe around. The more they can see familiar faces, the more at ease they will be. It’s up to you to ensure those connections are safe and loving.
Gather your support system in public spaces you frequent and teach the skills appropriate for your child to navigate their world with more independence. This practice with familiar, safe people can provide such a solid foundation.
With bullying, it helps me to focus on commonalities, not differences. Preparing a Down syndrome child to talk to new people, to discern the feeling of “unsafe”, to manage social dynamics alone, these are the same skills we teach neurotypical children.
If my child is having difficulty making friends at school, how can I help?
It’s critical for Down syndrome children to have communities that include both neurodiverse and neurotypical peers. In addition to natural opportunities, we parents are the ones who facilitate those friendships by providing opportunities for connection.
Mikey’s favorite program growing up was Special Olympics. He was an active participant and that community along with the opportunities it afforded him were invaluable to his sense of independence. As his sister, I liked to stay close, and I got involved in the program, too. Special Olympics were formative for Mikey’s social skills and for my choice of career. I’m so grateful we were able to share those experiences.
Community-building is proactive work. Sports, art classes, science explorations, even peer tutoring or big buddy groups, are all ways to support your child establishing friendships within your community.
Your child may not come home requesting a specific peer playdate, but if you pay attention to the stories they tell at the end of the school day, you’ll start to hear the names that come up over and over again.
They might be naming children as friends who are friends. They also might be naming children as friends who they actually have some tension with. It can be hard to decipher at times. Teachers are an invaluable resource for getting information about who your child’s connecting with in a positive way.
Reach out to ask who they’re playing with and also who may have common interests. If your child is into art, ask their teacher who else in the classroom enjoys the same and reach out to their parents to set up a painting playdate.
We want to listen closely, gather information, do some fact-tracking and ask for support from other adults who know. We want to be proactive whenever and however we can in creating a community container for our children to practice their developing social skills.
How can I best support my child with Down syndrome as they go through puberty?
How parents approach this time is specific to their individual child’s strengths and needs. Ultimately, though, adolescence is about growing independence.
This is the time to incorporate independence into self-help skills like grooming and hygiene if it hasn’t been done already. It’s also time to start encouraging more freedom through personal space. Let your child navigate this time on their own terms, coming into a deeper sense of their own agency as they do.
They’re figuring out who they are and what they’re about, just like every other teenager.
Just like their neurotypical peers, teenagers with Down syndrome require a lot of patience. Listen, then listen more. Understand their need for greater freedom and let them have it whenever it’s appropriate. They’re laying the foundation for their future adulthood.
While preteens with Down syndrome experience their physical body developing at a similar pace to neurotypical preteens, they may have less of the social/emotional skills to help them navigate this time. Enlist the help of therapists, teachers, and doctors to equip your children.
Once again, every person is an individual. Your questions about your child’s puberty and sexual development will likely evolve as they do. Don’t be shy about reaching out for find the right resource to help you navigate these important conversations.
Will my child with Down syndrome be able to live independently as an adult?
This is a personal question with a lot of variables, but you don’t have to wait until your child is going through puberty to start preparing them for adulthood. Start a conversation early on with their pediatrician, school team, siblings, and others in their life about how to start preparing.
Every child has their own path toward adulthood and future independence is all about taking the steps to get there.
Our family began discussing Mikey’s “adulting” long before his teen years. While it was hard to imagine where his skills would be as an adult, we knew that he would inevitably graduate and need a plan for his future.
With the help of a transition specialist that was part of his educational team, my parents and the school explored a variety of options. He graduated school when he was 21 years old and lived at home for the next several years attending assisted employment options. Eventually he moved to a residential campus, a transition that occurred over time and often had my parents dodging curveballs (behavior concerns, personal self-care needs, communication hiccups). Now he lives on campus much like a college student in a dorm. He is with friends, attends work, is a part of his community, and brings his laundry home on the weekends!
Down syndrome individuals need a lot of practice with life skills necessary to independent living. Get familiar early with state and county resources and programs that provide practical opportunities. Include those that are a part of your young adult’s network: your family, educators, doctors, therapists, coaches, community members and care team in practice and preparation.
Most importantly, include your child. Let them tell you what kind of adult life they dream about. Let them dream big and collaborate with them setting small, realistic goals to get them where they want to go.
Independent living can be defined in so many ways. It might mean living with a roommate, a support agency or a house caretaker. It might mean undergoing an independent living program.
Once you know where your child wants to go, you can find the support they need to get there.
What techniques can parents or caregivers use to start teaching life skills to a child with Down syndrome?
For Mikey and so many other neurodiverse individuals I’ve worked with, the key is always connection. If Mikey isn’t interested in learning something, it takes a lot of creativity to teach him. Laughter helps. Fun and play help. Helping him form an emotional connection with the skill helps.
Growing up my mom always reminded us that Mikey needed space to learn his own way. Letting him make decisions and participate in his learning engaged his interest and fostered a sense of ownership over his developing life skills.
Learning how to tie your shoes isn’t particularly interesting. One of my favorite childhood stories about Mikey included him throwing his shoes out the classroom window during each and every lesson. But, once he understood he needed to learn to tie his shoes so he could get to the playground, he had a connection to something that mattered to him and he learned the skill.
When we’re teaching skills, it’s crucial to break them down into steps that are both manageable and enjoyable.
Practice when it counts. Don’t teach your child how to make the bed in the middle of the day when they’ve been awake for hours. Do it in the morning. Build it into their daily routine, but start small. Start with step one. Let them begin each day just straightening the covers or stacking the pillows, and build from there.
Making the bed doesn’t happen in one step. Nothing in life really does. Learning to take small, manageable steps to where we want to go is the secret to success for us all.
Which brings me back to the beginning: Love and patience are the key to everything else. Patience with yourself, your spouse, your family members, your children. Love as the fuel to advocate for your child.
My dad is gone now, and my mom is getting older. I’m more aware than ever what a gift it was the way my parents prepared me for the role I’m in now, as a primary caretaker for Mikey. I’m so grateful they modeled for me how to meet his needs, preparing us both for our future without them. That’s the best kind of parenting.
If you have neurotypical and neurodiverse children, balancing your time and attention for everyone can be challenging. Here’s what a neurotypical sibling might want you to know, and action plans for how to give them what they need.
