Down syndrome, Parenting

Down Syndrome Diagnosis: What you Really Need to Know

When a new parent receives the news that their baby has Down syndrome, it is not always delivered in the best or kindest way. Sometimes, a geneticist who doesn’t have any real-life knowledge of people with Down syndrome feels an obligation to make speculations on the rest of that baby’s life when they are still in the womb or freshly born, based on outdated ideas about how disabled people live in the community. Other times, a new parent may get a very kind and compassionate diagnosis, but then turn to Google for more information and become inundated with information that may or may not be accurate, and is often overwhelming. Many hospitals still give out copies of Babies With Down Syndrome, a well-meaning book that outlines nearly every possible health complication a baby or child with Down syndrome can have, causing parents to worry unnecessarily about their new baby. Some people think medical information or information about government services is the priority after a child with Down syndrome is born, and that couldn’t be further from the truth. A baby was born! A whole new person exists in the world because someone worked to bring them here with blood, sweat, and tears.

Here’s some of the most important information your child’s geneticist may have forgotten to mention:

There’s an impulse you can have when you have a baby with Down syndrome to spend a lot of time trying to imagine what their life will be like– what they will do, what they will look like, what will their adulthood be like, and so on. This does not happen for most parents of typically developing children at this age, nor really should it happen with anyone. Your child is a baby. They have tiny fingers and toes for kissing, sweet smells in their neck, and squishy cheeks for kissing. I bet they have the sweetest breath you’ve ever smelled. For some reason, doctors and geneticists often want to give what they perceive as an “accurate” picture of the entire life of a person with Down syndrome when they are fresh out of the womb. And just like it’s weird to do that to other kids, it’s weird to put that on new parents of a baby with Down syndrome. Often times these professionals have no experience with anyone with Down syndrome after early infancy. They may not know anything about how people with Down syndrome interact within their families, communities, or schools. They may not have any idea what opportunities exist for people with Down syndrome. They’re not qualified to give information beyond current medical statistics, and even then their delivery can leave something to be desired.

All people have strengths and weaknesses. That’s true of people with Down syndrome as well. No parent can predict what their child’s strengths and weaknesses will be, and they shouldn’t.

Enjoy the cuddles and snuggles, rest in your postpartum, don’t worry so much about anything that is going to happen beyond 6 months from now. Just like with any other kid, you can’t really know anyway. Many of the guesses you could be making might be based on stereotypes or outdated ideas. Spend your time marveling at those bitty fingernails and baby sighs and try not to invent a future for them just yet. The future has never been so bright for people with Down syndrome– let that be enough for now. This time is precious.

-It is common for children with Down syndrome to be born completely healthy. While there are health complications associated with Down syndrome, many children with Down syndrome are healthy and do not need medical intervention. Babies who do need intervention, such as surgery, generally fare very well and go on to be healthy throughout childhood and adulthood. Of course, some folks with Down syndrome have medical issues that can be ongoing, but there is a lot of parent support out there if that’s a bridge you need to cross with your child, and modern medicine has a lot to offer in the way of well-tested treatments by doctors with practiced hands.

-There’s a lot of pressure to intervene in the infancy of a baby with Down syndrome. Early Intervention is often suggested before your head stops spinning, and people are telling you about bureaucracies you are going to have to fight and toys you should buy and exercises you should do and so on. The reality is that doing a ton of therapy, exercises, and intervention isn’t  backed up very well by clinical research. The most important thing you can do for a new baby, Down syndrome or no, is to be responsive their cues and tend to their needs. Sometimes babies with Ds have more subtle cues, so you have to pay a little closer attention, but they want the same things as all babies- to be held, to be loved, to be talked to, a baby massage, milk, clean diapers, to sleep on your shoulder, and so on. A lot of parents feel pressure to start therapy immediately or to “stimulate” their baby in some way. It’s okay to let your child just be a baby! Your job is to love them and communicate with them, and that does more than all the Early Intervention in the world ever could. Consider waiting to introduce the world of therapy to your baby, and do it slowly and purposefully when you do, looking to your child for cues about where they need support, rather than checking off the boxes a mommy blog tells you that you should or staying up all night creating a registry of specialized toys you are sure you need to buy to assure your child’s future.

There is nothing you can do that will ensure your child is exceptional. This is true for all children, but because therapy and Early Intervention exist for babies and toddlers with Down syndrome, sometimes people begin to believe that if they do enough things they can ensure their child will be a superstar of the Down syndrome world. Rather than pushing your child to be the top of the heap, focus on the ways in which they are exceptional to you. For example, how they light up when they see you, the sound of their voice, the way they melt into you when you snuggle up to watch a movie or the adorable way they hold their hands when they sign “more.” Your acceptance and approval are what will be important to your child in life, so let go of the search for approval or status with others.

-People are going to say really weird and sometimes rude things to you. This is a reflection of their hang-ups, not of you or your child. It’s okay to distance yourself from people who do this or set boundaries around how much energy you devote to educating people. Just remember to stay close to those who want to care for you and celebrate your child’s life. It can be you and your baby against the world, but it doesn’t have to be. Plus, it feels good to see other people adore your child. I promise you people will be lining up to adore your child soon enough if they aren’t already.

-Your baby is going to reach all their milestones in their own way, on their own timeline. That’s true for any baby, but for kids with Down syndrome, the spectrum can be a little wider and taller. Our culture can be really hung up on typical timelines, but the age at which a child develops a skill cannot predict anything about their future life or skills. It is simply the age at which they mastered the skill. Resist the urge to compare your child to others, even those with Down syndrome. Most children tend to focus development in specific areas for a time and switch around. Your late walking toddler may be a great communicator! Embrace a life where your baby takes the lead on their own timeline. It’s liberating to truly let go of these pressures. Celebrate the skills your child masters as they master them– you will find they are delighted to celebrate with you!

-A new person exists in the world– a beautiful baby! Congratulations! Welcome to the world! This little person is a living, breathing, miracle. There are countless possibilities for them, and for you. Your relationship with them has the potential to bring untold joy to your life and those around you who get to witness it. They will have their own, nuanced perception of the world and everything in it, and if you pay attention, they’ll share it with you.

 

Parents of children and adults with Down syndrome, what do you wish you had known when your child was diagnosed with Down syndrome? Please share in the comments!

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