Niah’s ROAR
By Renae Rief

What are your names and your children’s names?

• Gary Rief – Dad
• Renae Rief – Mom
• Niah – aka...Niah Sienna, Niah, Niah-bean OR “Annoying-Niah” from her bother.
• Cohen

What does Niah most like to do? 
Niah love’s boating and everything about it: family, riding, tubing, and watching. She loves swinging, watermelon, listening to music, and she absolutely adores Christmas. She is a “family being together” kind of gal…which has been quite the asset to our little family and BIG extended family. Niah enjoys being surrounded by LOVE. Even though she appears from afar to relish being alone, she is our “love being NEAR the action, not IN the action gal.”

What does Niah least like to do?
Being the first one to enter a room or building – especially in a new setting. She prefers that others walk in front of her with a bit of space.  She also does not want you to see her smile so she puts her arms up so that you can’t see it.

What does Niah’s brother love about her?
Cohen just really enjoys her presence. It seems silly, but he does. While Cohen was playing in the Spring rain he exclaimed "I need something."  "I need Niah!"- priceless.

Niah Sienna and Cohen are unique kiddos. I see Cohen taking great pride in that uniqueness and being totally comfortable with differences in himself and others. He embraces Niah’s unusual behaviors that make her stand out in a crowd. This has sparked confidence in Cohen to reach out to others and be a leader. He loves talking about Niah and her story. 
“Niah may have Down syndrome and Autism but she is more alike than different, and I love her.” – Cohen Rief

What tipped you off that she might have something more going on than just Down syndrome? 
Niah’s greatest challenges always revolved around communication…yes, she was delayed on a variety of milestones often consistent with DS, however she started rolling over at a young infant age of 4 days. Until the age of about 6, Niah was gaining spoken words.  It took quite a while to confirm the co-occurrence of Autism Spectrum Disorder (ASD). 

I knew in my gut that was probably what was going on.  he started to regress and was unable to do things that came easily before, such as knowing and singing the alphabet and “Happy Birthday”, naming all her classmates, engaging in conversations, and playing with others.  She was keeping way more to herself and was just not interested in pretty much anything. She started being noticeably quiet and the words just went away. She would stare off in the distance and in fact it was thought she was having seizures. That was part of the delay in the diagnose – to ensure it was not something medical and to differentiate what was potentially ASD instead of Ds.  This required appointments with a variety of specialists that, at times, resulted in months of waiting before Niah could be seen. Eventually, the Psychologist at the Kansas City Down Syndrome Clinic said that Niah had the tell-tale signs of an individual with DS-ASD…it was a weird sense of relief.

What support would you offer other parents who have a child with more than the diagnosis of Down syndrome?
At times it feels like a mountain of things that need to be accomplished. I, especially, must put myself in check and really focus on what will make Niah happy and as self-reliant as she is able to be throughout her entire life. 

I know school is always a big deal with lots of questions by parents, so I shared an example Vision Statement and some questions we use during school meetings.

You already know the drill that “extra” comes along with Down syndrome, and I would say the same holds true to ASD – extra, extra, though – which means all kinds of surprises. If Niah Sienna is any indication, though, surprises can be good and even amazing.

What are ways that people can best support Niah and others who may have a similar diagnosis?
We hold a special place in our hearts for DSAF. When Niah grew out of the DS Walk team name “Niah’s Twinkle Toes” -- inspired by her love for dance-- we knew we needed a name that encompassed the ever-evolving girl Niah was growing into.  We asked some of Niah’s close friends for name ideas. They nailed it with “Niah’s ROAR: Reaching Out for Acceptance Rocks." 

It was the perfect combination of Niah’s love for music, a bit of irony for Niah’s non-traditional communication style, and totally on target for the essence of advocacy and awareness of the Step Up Walk. This team name has so many pieces of Niah wrapped up in it that over the years we have been able to use it to spread awareness through social media and  Cohen’s presentations to his and Niah’s classmates – even to a local community group.

“Niah’s ROAR: Reaching Out for Acceptance Rocks" 

• “Reaching Out”: We want others in our communities, be it school, church, friends or families, to consider Niah. Include her. Reach out to her. She may choose not to go, but you reached out to her and she will remember that connection you made. The trust she has with you will grow.
• “for Acceptance”:  Niah Sienna has some tendencies that may not make sense, but they make sense to her— (swaying, unusual sounds, rubbing her nose, using a fidget). Accept it. Accept the beauty of her differences. Accept Niah Sienna.

In a moment of weakness some time ago I thought out loud that I just wanted her to blend in.  Cohen was quick to note “Niah was born to stand out.”  He is right. She was. Hopefully Niah inspires others to change how they think about DS-ASD and show kindness towards those who are different.