Last year this little charmer came to the studio, was woken up from a nap, and produced a million smiles. I couldn’t believe it!
He’s grown a lot!
And one thing is for sure, his sisters absolutely adore Robert!
His laugh is infectious.
One of the things I hear over and over throughout the course of these mini sessions is “I wish people would just see a child first.”
With Down syndrome (and other special needs that are visible, people are quick to ask about disability or ability or “What is it like to have a baby with that condition?” Worse still, people generally refer to children with Down syndrome as “the Down syndrome baby/child/person”.
Like all individuals with Down syndrome, Robert is a child first. Just like any other child he longs for your love and affection. Referring to him as “the Down syndrome baby” is offensive because it defines Robert by his diagnosis. But Robert is more than his diagnosis. Robert is a little boy with an amazing sense of humor and a family who loves him. He also happens to have Down syndrome.
So what is the best way to refer to a child with a disability? By their first name.
If you need to reference their medical condition use their first name first. Robert, who has Down syndrome. Holden, who has Sensory Processing Disorder. Debbie, who has Cerebral Palsy. Their conditions do not define them.
I first met Stephanie when she was just two months old.
I was so very excited when her mama came back again for this year’s Down Syndrome Awareness Mini Sessions. Actually her daddy brought her, which made it twice as fun to surprise mama with images!
Due to the low body tone associated with Down syndrome, Stephanie had not mastered sitting up. We had propped her up on the pillows on our bed set up and we would have approximately 45 seconds to take a few images before she would intentionally roll herself off the pillows. It was hilarious.
Obviously Stephanie has a sense of humor, but her mama also described her this way: “Stephanie is sweet, calm, and laid back. She has an adoring 2 year old sister who loves to entertain her and make her smile. Her favorite activity is playing with her toy piano and drum.” Sounds pretty much like every other baby you meet with a two year old sister, right?
Stephanie’s mama Amanda had this to say to other mamas expecting a little one with Down syndrome:
There are many, many, many more joys then hardships in raising a child with special needs. At first, it’s easy to think of all the hardships, but soon the joy will overcome that.
I know that I have found so much joy in getting to know these children and their parents. I’m so grateful to be given this opportunity to show everyone just how amazing each of these families and children are.
Do you remember sweet Piper Joy from last year’s Down Syndrome Mini Sessions? At just under two week old, Piper was the youngest little one with Trisomy 21 that I photographed in 2015.
Piper’s story is incredible. She is a rainbow baby after many losses. And she is wanted, doted on, and simply adored by her parents.
I could write a novel about this sweet girl, but her Mama Lori already did! So I’ll simply share her words with you.
Piper loves snuggles in the morning after she wakes up. She loves watching her doggies run and play. She loves when we talk and sing to her. When Piper sees either of us once we get home from work she greets us big smiles. She will laugh and giggle when we kiss her hands and feet, or when we kiss around that little neck. She plays with her toys and loves her pink Maraca. She enjoys meeting new people and she affects all those who meet her. Her smile is infectious, and complete strangers have been unable to resist holding her, once they do that, they love her. What do we love most about her? I guess we would have to say from the scares we had during pregnancy, to the prenatal diagnosis, all the way to now…we love her ambition and drive, the fact that she works so hard to achieve her milestones and she never quits trying and she never gives up. She has taught us how to be better parents and individuals in general. She has shown us our truth and what it means to have a special needs child, and we wouldn’t change it for the world.
When people see Piper we want them to see faith, hope, love and acceptance. We want them to see her beautiful little self and feel the love, warmth and acceptance she has for them as she freely and selflessly gives them her beautiful infectious smile. I want people to think after meeting Piper that if someday they have a special needs child that it would be a positive life change and not a negative one. We thank God every day for creating her just for us, but, he didn’t really create her just for us, because we have seen how she has affected and touched many people and will continue to do so for the rest of her life.
What would I say to a mama who just received a Down Syndrome diagnosis? I guess I might say something like this: “I imagine you may be scared, sad, maybe even angry, and that’s ok and very normal. Try not to dwell on those emotions for long. Take this time to learn as much as you can about your baby, because you and they deserve it. Just as with a typical baby, your son or daughter will have ups and downs, set backs and achievements. Because you’ve chosen to keep your gift and give him/her life you will soon experience a love for this child that you’ve not had for another. We love all of our children very much, but when you have a special needs baby, it is different and the emotions although very much the same as for our other children, are special in their own way, you will be a better person because your baby will open your eyes, your heart and soul to a life you couldn’t imagine you would have.”
When she walked into the studio with her mama carrying her, I couldn’t help but squeal delight. Amanda’s sweet arm rolls and curious expressions won me over instantaneously.
We spent a few minutes digging through the studio wardrobe picked out our favorite items for Amanda to wear. Her mama chose a the hand knit Caroline dress, a pink knit romper, and a lace sweater romper. And Amanda loved them all!
Amanda was almost six months old and just learning to roll and sit. Her mama’s favorite thing about Amanda is how her eyes smile. Her daddy knows how to make her giggle with silly songs.
Amanda’s mama Anne wants the whole world to see how much Amanda is loved. But also how much possibility is in her tiny body: she will sing and dance. Amanda a person with all of the potential and promise given to every person at birth.
Amanda reminded me so much of Lydia the first time I photographed her. It seemed serendipitous that we should finish this second round of Down Syndrome Awareness Mini’s with a baby who reminded me of the little girl who launched this project.
Since Amanda was in the studio helping me welcome our sweet clients and Lydia was with her we were able to sneak a little image of the two babies together. Lydia was delighted with the sweet “baybe!” There were sweet kisses shared and lots of “oohing” and “awwing” from the mamas. It was the perfect way to finish out this year’s Down syndrome awareness project.
Sweet baby Amanda, I can’t wait to see what amazing things you will do as you grow up!
This tiny ball of energy looks like total sweetness with those girls and this sly little grin.
But don’t let him fool you, he can totally rough house with big brother Amari. He especially loves to be chased.
Ezra also has a sweet side. He love cuddles while reading a good book with his mama. And did I mention his curls?!
Ezra has Down Syndrome, but having a genetic condition does not define him He is person first: an adorable little guy just longing to be loved.