Those who know me know I can often be accused of being the “word police.” I like to challenge words, just like I was challenged when I found out about Josee’s diagnosis during my pregnancy.
Anyway, the word “disability” really doesn’t gel with me for two reasons:
1. It implies an “us versus them” mentality. If you hear of someone who has a “disability,” you may immediately think of that person as being different from you. You may even begin to believe all those who have disabilities are the same. This can create a kind of distance or disconnection between people.
2. Saying my daughter has a disability implies she has a deficit of ability. I would love to hear how you think this applies to Josee. She is funny, charming, cheeky and bright. She walks, talks, eats with utensils and plays with her siblings and pets. Yes, on paper she may have delays in certain areas, but I don’t believe her cognitive, speech or physical abilities are all that she is. She is extremely empathic, sensing when you are sad or in distress. Her emotional intelligence is amazing. She has a wicked sense of humor and tons of character. Her delays are shadowed by her abilities in other areas — areas that perhaps society doesn’t value as much as others.
If you’ve read this far, keep reading. I want to talk to you about the “continuum of ability,” a phrase I coined when speaking to a local school group.
You see, we all lie somewhere on that continuum. It always depends on what it is you a measuring.
We all have strengths, weaknesses, differing abilities.
If the skill is speech, then maybe Josee is lower on the continuum of ability than her typically developing peers. If, however, the abilities we are measuring are love, cheekiness, humor and empathy, then she would be right at the top of the continuum.
Please help me to break down the myths that surround Down syndrome. Place yourself on the continuum of ability rather than in the disconnected group of people who don’t have disabilities. It will change your perspective, your mind and your heart.
Once in a while I like to look at the search engine terms that bring people to my site. Some of them are so puzzling I dedicate blog posts to respond to those searches. Since it landed those people on my blog I might as well write about it.
I like people with Down syndrome. There is one particular little girl I love with a fierceness that runs deep and wide. She’s my daughter.
But, rather than responding with, “Well, I don’t like you!” I’m going to first extend some grace and say this is not really about liking or not liking people with Down syndrome, but more about understanding what Down syndrome is, or perhaps even making sense of a negative experience.
I have talked to enough people outside the Down syndrome community to know some have had negative experiences with people who have Down syndrome. I know some people with Down syndrome might display some scary or unexpected behaviors. If this is the reason why you don’t like people with Down syndrome, please consider this — one experience is not the defining factor for all people with Down syndrome.
Don’t let one negative interaction keep you from meeting people who you would really enjoy. Give them a chance. I think you will be surprised to discover there are some pretty enjoyable individuals who have Down syndrome.
And if you wonder what Down syndrome is, here is a quick explanation — people with Down syndrome have an extra 21st chromosome, meaning, Down syndrome is a genetic condition.
So let’s talk more about this because unfortunately the search term “I don’t like people with Down syndrome” is negative.
People with Down syndrome have feelings, so if you laugh at them or make fun of them because of their genetic condition, it hurts. It hurts their feelings, and it hurts their families. Nobody likes a bully. Meanness is not flattering to anyone.
Maybe you’re scared of something you don’t know. Often, we don’t like things we are scared of or not familiar with. So perhaps getting to know someone with Down syndrome would be a good idea.
People with Down syndrome are people, like you. They have unique talents, gifts, abilities and personalities. I’m sure you don’t like everyone you meet because you either click with someone or you don’t. So, no, I don’t expect anyone to like every single person with Down syndrome. Now, if you do not like people with Down syndrome because of their diagnosis, well, that says a lot more about you than about them. Unfortunately, it communicates these things about you:
1. You are self centered because you only like people like you.
2. You are intolerant because youdon’t like people who are different from you.
3. It shows your ignorance. You don’t like people with Down syndrome because they have Down syndrome. Okay then, sounds like a valid and logical reason… oh wait, no, it doesn’t.
So don’t be a bully — don’t be self-centered, don’t be intolerant, don’t be ignorant. Those are not positive qualities. Be a friend. Everyone likes a friend, and Down syndrome is not a condition that prevents friendships from happening.
The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Madeline Stuart wants to be a model for all the right reasons.
The 18-year-old from Brisbane, Australia, once struggled with her weight, a common issue for people with Down syndrome, according to the National Down Syndrome Society. A year ago, Madeline was more than 40 pounds overweight when her inability to do a cartwheel inspired her to get fit, her mother, Rosanne Stuart, told The Mighty in an email.
Madeline cut out junk food and began exercising regularly. Now, she lives a healthy and active lifestyle and hopes to launch a modeling career. She wants people to see her photos so she can help end discrimination against people with disabilities.
“[Madeline] wants people to know Down Syndrome is a blessing,” Stuart told The Mighty, “something to be celebrated.”
Stuart said Madeline doesn’t care that much about looks, but she loves being in shape because she can run around all the time without feeling exhausted. Aside from dance, gymnastics and cheerleading, Madeline also swims and plays basketball and Special Olympics cricket.
Seeing my two daughters together fills my heart with such joy. They truly admire each other and you can see it in their young eyes.
By the time our oldest, Adelaide, turned a year old, we knew she was meant to be an older sister. We tried to get pregnant, suffered an early miscarriage and finally, after nine months of trying, baby number two was on her way.
We shared the good news at Adelaide’s second birthday. She opened a gift with a shirt that read “Best Big Sister.” We took many photos and video of the reveal. It was so wonderful to share the news with family and friends.
About three weeks after the “reveal,” we were given the Down syndrome diagnosis. A little glimmer of delight was also given that day. Adelaide was going to have a baby sister. Two girls? Oh what dreams I had. But she has Down syndrome. What will that mean for Adelaide? Will she feel restrained from pursuing her dreams, feeling the burden to care for her sister? Would they have a relationship like my sisters and I do? Would they have that closeness? Would Adelaide resent having a sibling with a disability?
We still embraced the dreams and plans of having two little girls. We talked to Adelaide about how fun it’s going to be with a little sister. As we would play, eat, take baths and go to bed, she would ask, “Where’s baby sister?” That question melted my heart.
Five weeks after the Down syndrome diagnosis, we received the most devastating news of our lives. Our unborn baby at 18 weeks gestation was suffering from non-immune fetal hydrops. The condition was likely fatal. I fell deep into a depression as I carried this baby that was going to die. In my anger and pain, I deleted the photos and video of the pregnancy reveal.
Three days after that diagnosis, I was driving Adelaide to daycare. As she sat in the back seat, staring at the passing trees, cars and houses, she asked, “Mommy, when is baby sister coming?” Those words were like a dagger into my heart. Not only am I losing a child. She is losing a sister. A sister she never knew. To function, we ignored the question and quickly changed the subject. She eventually quit asking.
But my belly continued to grow as Adelaide’s baby sister was determined to make it into the world. That terrible fatal condition was resolving on its own. The sun finally began to peek out from behind the dark angry clouds that filled our lives for several weeks. Adelaide was going to be the big sister we hoped she would be. We eventually reintroduced the topic. Even though months passed, she showed no signs of confusion. She just continued where she left off, in her sweet 2-year-old high-pitched voice: “When is baby sister coming?”
A lot of people have told us that we were meant to be Lorelei’s parents. I don’t know if “meant” had anything to do with us being her parents, but I do know Adelaide was meant to be Lorelei’s sister. They look at each other, deep into each other’s eyes. They know each other. They always have.
Adelaide speaks for her sister. When Lorelei is upset or has a new behavior, gesture or sound, Adelaide interprets it. When Lorelei is crying, Adelaide runs to her, wraps her arms around her and says “It’s OK, it’s OK, I’m right here. I’m right here.” They light up at each other’s mere presence.
Adelaide tells me about how she will teach Li Li how to walk, talk and ride a bike. She tells me how much she loves her baby sister. A couple of days ago, I was driving the girls to daycare and Adelaide said, “Mommy, I just love…” and she paused. I thought, Oh, she is going to say Mommy. I was wrong. Oh well. She continued, “Mommy I just love Li Li bird (one of the many nicknames we have for her). She is such a cutie pie.”
I feel guilty now for having any thought that this would impact Adelaide negatively. The sorrow I felt for myself, my husband and for Adelaide at the possibility that this little beauty would not make it, put it all in perspective for us. Lorelei was meant to be. She was meant to be our daughter and she was meant to be Adelaide’s baby sister. Adelaide is not going to take care of Lorelei because she has Down syndrome. And she is not going to “take care of her” at all. She is going to “care about” her because she is her sister.
My daughters totally love and accept each other because they are sisters. That relationship is not deterred or defined by a diagnosis of Down syndrome.
The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Thank you. What you’re doing for my daughter, Willow, is amazing. I’m in awe of how far she’s come. And as I’ve told you many times, I couldn’t do this without you. Seriously.
But can I tell you a secret? You’re also helping me. OK, I should clarify before you start charging me double. What I mean is, I get a lot out of my daughter’s therapy sessions. Let me explain.
While the world sees my daughter’s limitations, you see her potential. You share my dreams for Willow’s life. You want her crawl, to walk, to fly.
You are her cheerleader. You’re a constant encourager. And you celebrate every milestone just as I do. It feels good to have someone on our team. Your presence reassures me that we’re not in this alone.
While Down syndrome is new to me, it’s not to you. You let me know what might happen, what you’re seeing and what you’ve seen before. You explain everything thoroughly but compassionately. While Willow is your patient, you genuinely seem to care. You know this isn’t easy for her. You know this isn’t easy for me.
While your job is to teach Willow how to crawl, walk, play and eat, you’ve graciously taken on the chore of being my friend. I know that’s no easy task. I like to talk, and sadly, you’re often the only adult (other than my poor husband) I see most days. Sure, we may not hang out after hours, but I consider us somewhat close. I’ve cried in front of you, for Pete’s sake. But I’ve also laughed with you over silly things like TV shows, poopy diapers or parenting fails. Man, I can’t tell you how good that feels. As you know, this whole special needs parenting thing can be draining, especially the therapy part. You let me check out for a moment and forget what we’re doing and why you’re here.
I’m not exactly sure how long you’ll be in our lives. Schedules change, needs change and insurance will only cover so much. But, as I said earlier, I’m so grateful you’re here right now. While I look forward to the day Willow will no longer need you, I wonder what that will mean for me. Will I be ready to say goodbye? Will I be able to do this alone? I don’t know. I just don’t know.
I guess if Willow can learn how to fly, I can too.
The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.