- I remember when we got our diagnosis of Down Syndrome with our first child.
I remember vividly the wording, the room, the light in the room, what the doctor had on, and what popped into my head.
It's a really, it's an impactful moment and it can be less stressful.
(upbeat music) Getting an unexpected diagnosis about your baby prenatally or postnatally, such as a chromosomal difference or a potential intellectual disability or any disability can be a really, really emotionally-charged experience.
Every family's experience is different.
I can tell you from personal experience, there is no right way to feel or wrong way to feel.
But the way the news is delivered can really be a supportive experience or it can be a really harmful experience.
And that's why it is absolutely imperative to deliver the news appropriately.
- You know, some couples out there may make a decision about continuing or terminating a pregnancy based on the type of information they receive about a medical diagnosis.
This is why the wording we use as medical professionals has to be complete, accurate, consistent, nonjudgmental, up-to-date, evidence-based, and respectful.
And this involves a lot of us.
Nearly a quarter of adult Americans, or 61 million of us, are living with some type of physical, sensory or intellectual disability.
So how we talk to families, how we convey diagnoses, how we offer counseling or support is really important.
In fact, a document put together by a few medical organizations concluded that with Down Syndrome, for example, information and counseling should be complete, consistent, nonjudgmental and non-coercive.
Bethany, in your opinion, what's the best way for health care professionals to deliver this information and support families who receive this kind of diagnosis?
- I think it's really important, just like you said, to listen to families and honor each family's experience and hear where they are at the moment.
Listen to what they want for support.
Try to provide that support.
And let me know if this offends you, but if a medical professional isn't really jibing with your family, it doesn't mean they're a bad doctor.
You can change doctors, you can change providers.
We ended up switching doctors two times until we found two doctors who were very excited to collaborate with each other and with our family to figure out what was the best care for our child.
At one point, it took two years to find another doctor who is a good fit with our children's pediatrician.
Would you be offended if we broke up with you as a family?
- Offended is not the right word.
I would be sad if you broke up with me, I'd be like socially.
I was like, "I enjoyed the interaction."
Please don't leave.
But at the same time, you should always feel empowered to seek the best care for you, your specific situation, your child.
- This is oversimplification.
But if you were seeing a hairdresser who kept giving you a haircut that you were really unsatisfied with and uncomfortable with, you would find a new hairdresser.
The care of your child is infinitely more important than your hairstyle.
- What if you cut your own hair?
- You can cut your own hair, Alok, but you should not be encouraging anyone to doctor their own children.
It's important for doctors to respect parents and families as equal experts in their child's life and care.
And really, the best outcomes happen when we're all working together.
And words really do matter.
Here's a study about mothers who have children with Down Syndrome.
82% were able to remember with accuracy the wording used when they first received that diagnosis about their child 21 years later.
- And there are different categories of disability.
- We usually put them into categories like physical, sensory, intellectual or developmental.
A physical disability is something that would result in a loss or impairment of a bodily function that may inhibit somebody's mobility, their stamina, dexterity, their ability to reach out and grab something, anything that you're physically doing.
A sensory disability is any medical condition that can affect the brain's ability to process sensory information.
And examples of sensory disabilities will be anything that can cause loss of vision, loss of hearing, or sensory processing disorders, which are often seen in children with autism spectrum disorder.
Intellectual disability is used to describe people who may have certain impairments in cognitive skills, so the way they communicate, interact, or take care of themselves.
And children with intellectual disabilities may develop or learn differently than neurotypical children.
It's important to know that intellectual disability could take place at any time during childhood, even before birth.
Developmental disabilities encompass a variety of medical conditions that can affect someone's language, learning, behavior, or their day-to-day functioning.
Now, intellectual disability is just one type of developmental disability.
- And disabilities often overlap.
Some kids with Down Syndrome have intellectual and developmental disabilities, also known as IDDs.
Another thing that's important is using person first language.
That's seeing someone as a child or person before their disability.
For example, we say a child with Down Syndrome rather than a Down's Syndrome child.
- We should always ask people how they want to be referred to because the disability or the medical condition does not define the child.
They define themselves.
I always stress we're taking care of individuals.
We're not just treating a medical condition.
- It's important not to say things like "normal" and "abnormal," "good" or "bad."
- We can use better terms that encompass the differences among us, like "neurotypical" or "neurodivergent."
- Children at a certain age group do get bullied and kids with disabilities are at a higher likelihood for getting bullied.
And that's why it's so important to raise our children respecting all abilities, accepting all abilities and being inclusive of all abilities.
- And if we teach our children that, we can smash some of the stigma that is associated with disabilities.
- My dream is that we really start to reject this notion of societal "norms" and adopt a way more inclusive world view.
In many ways, having a family with a child or a person with a disability is different, but in most ways it's the same.
A child with a disability needs all the same things a child without a disability needs, love, support, respect, opportunity and a vision for a really awesome, awesome life.
If this is something that your family is going through, feel how you're going to feel, find your tribe, find the people that will love you, support you, and uplift you, your family just as you are.
That's hopefully what it's going to be all about in the future.
- I just didn't know what to do after that.
- And when you talk about disability, there are all kinds of disabilities, right?
- Oh, absolutely.
I don't want to say, "Oh, absolutely."
(voices harmonizing) Okay, ready?