1. Who are you? What are you like as a child?

My name is Sienna. I am five years old. I am very special. I am loving and want to be loved. I want to see new things and go places. I want to keep learning. I want to keep trying until I can do it all by myself. I want to be understood. I am strong, I am a fighter, I can do anything.

2. What are your passions, your loves, the things that make you happy?

I love horseback riding. I like to go fast! I love my family. My mommy is my best friend, but I love daddy snuggles. My brother helps take care of me. I love when he brings me a lollipop just because he gets one. I love to be tickled and giggle. To play games like hide and seek, and I love music and dancing. I love to go on trips. I want to see the world, it’s so big! I love bright city lights. I love the beach and swimming, I think I am a mermaid. I love my best friend Ashalina, she understands me. I love to make new friends, even though sometimes it is hard for me. I like taking pictures with mommy and dressing up like a princess.

3. This is for Karyn, your mom, tell us the story of Sienna’s journey from birth until now.

I had a regular pregnancy until 30 weeks when I was diagnosed with Polyhydrominos which is to have excessive amniotic fluid. I began weekly monitoring for stress on the baby. They would check the baby’s movement and how rapidly my uterus was growing. At 32 weeks I began having some contractions from my uterus expanding so rapidly. I was hospitalized to get steroids shots to mature Sienna’s lungs and began medicine to reduce contractions. Fast forward to 37 weeks and five days, the doctors deemed it best to induce my pregnancy. We drained all the excess amniotic fluid, but it kept regenerating. I went into labor but Sienna kept floating back up out of the cervix and it became critical to get her out. She was born at 11:25 PM on February 24 via emergency c section. She was immediately rushed to the NICU as she was not responsive and could not breathe on her own. What followed were 2-1/2 months of hospital stays, ups and downs, test and more questions, with no answers. We spent 14 hrs a day at the hospital and that little girl kept showing everyone how strong she was. We brought her home two days before mother’s day with oxygen tanks she had to be hooked up to 24/7 and a feeding tube surgically implanted in her stomach. The next year met us with three more hospital admissions, one of which almost took her life when she contracted pneumonia. Still she refused to stop fighting. That is who she is deep down in her soul. A warrior, unabashed and unafraid to keep proving the doctors wrong.

They said she would not hold her head up, or ever walk, but they did not know Sienna. Every day she has grown stronger, but the blows kept coming. She was again admitted to the hospital with pneumonia before her second birthday. Again, she fought her way out. Sienna traveled with her oxygen tank that looked like R2D2 in our trunk. And flew on a plane with a oxygen concentrator.  We didn’t let the stares and questions stop us from letting her live. The year her brother was born, she began to change, she tuned us out. She stopped progressing with her communication, but we thought it was related to her not having the muscles and skills to eat as they are all interconnected. Although she was not able to attend school due to her health, she took ballet classes and made friends. She enjoyed it, but it was clear she could not learn like the other kids. As she got older it became harder for her to “fit in” and the friendships dissipated. She pushed on and found comfort in me.  It was not until age four that Sienna was diagnosed with autism. We could not wait any longer for her to catch up. This past year she has become a totally different child. She is back to her loving and vivacious self we always knew. She still does things on her own time, but she is determined to get them done.

4. As we have seen through your Instagram page @karynsphotobooth, there are so many ways in which a child can learn to speak. Tell us a little more.

Sienna has been in therapy since three months old. However, she was not referred to speech therapy since 18 months old. She learned some baby sign language and went to a group therapy group to learn to communicate.  She has been using her iPad and and app called Aacorn to communicate since age 4. This company has been very supportive of Sienna since day one of her using their communication app. She also uses PECS (Picture exchange communication system) through her ABA (Applied Behavior Analysis) therapy. These are icons she uses to tell us what she wants similar to the program on her iPad.  However, without her ABA these communication skills can not be met. Simple things like eye contact and pointing are key skills to build upon for basic communication.  There are countless repetitive lessons taught to get her motivated to look at you, let alone mimic the “M” sound due to her autism. However, this year she said “Mama” for the first time.  Her facial muscles have not developed typically due to her not eating by mouth, but she is now taking off with her feeding therapy and getting more coordinated. She has ups and down of communication, but we know she has it inside of her because she understands when you speak to her. That is because her receptive language is much more advanced than her expressive. When these two coincide we know it will all come together for her. She also does photoshoots as part of her therapy and for fun. It helps with her eye contact and imitation.

Sienna begins her homeschool at 9:30AM. Her therapists set up her day with her visual schedule then she puts on her backpack and goes into her playroom to begin.  We have various school appropriate posters, calendars, clock, weather and more set up for her. We sing out good morning song then go to circle time. At circle time we work on her skills like non verbal imitation where you say “Sienna” get her to make eye contact, then “do this” and touch your toes. That is a very basic skill in ABA therapy. This generalizes later on to more challenging things.  We also do table time where she traces and does Kindergarten ages activities. All of this incorporates her therapy lessons into her school program. We sing songs and ask her say “e, i, e, i, o.” We have her follow directions and make choices like that book she wants to read. All the while making sure she does appropriate behaviors and engages in the activity.  We also have a very intensive feeding therapy program. This has helped her develop a positive relationship with food that has now changed the way she sees it. She used to gag and push food away.  Not anymore, she grabs my cheeseburger and wants to taste it and her favorite food is popcorn. We are working on getting her to learn to chew and swallow as she only eats purees or smooth foods.

6. What have been the hardest challenges living with autism? The biggest rewards?

The hardest part is saying my child has autism. I feel like although she has had many disabilities and challenges since birth I could not wrap my head around it.  With support from her therapy team we have been able to realize that autism really is just a part of who Sienna is. It does not define her, which is the fear with labels. Also, when you have a special needs child it feels personal with every pic and prode at their progress, but in the end it is not about me, it is about Sienna and we are her support team. We are giving her the proper tools to progress and live her fullest life. A life that hopefully one day she can do on her own, but we take one day at a time and try to use every opportunity as a teaching moment. The biggest reward is seeing our girl make little changes every day. When she went upstairs all by herself the other day and put her pants on all by herself. When she tries a new food and her face lights up like she can’t believe it. When she looks deep into my eyes and kisses me. I tell her I love her and she signs she loves me and hugs me. I know she understands I can feel it. I love taking her on trips and having new experiences. I always promised I would stand by her side every day until she got better when we were in the NICU. The look on her face when she saw the lights in Times Square was unforgettable. When we walked hand and hand for Posh Kids Magazine and she stood proud as Sienna, a little girl that is magical yet happens to have autism. Her confidence grows daily and that is truly the greatest reward.

7. Where do you find support and resources?

Golden Gate Regional Center gave Sienna all her services until age three. You can refer yourself and I even referred my son because he seemed to speak late. Now he doesn’t stop talking! There is an autism support group through my son’s school. ADAPT behavior collective has been Sienna huge life changer as they have not only supported her but helped me become a better parent and support system for her.

8. Your Instagram has touched so many people, what is your explanation for the reaction? What is your ultimate goal in producing this page?

I am so humbled and honored by the outpouring of love for Sienna. I did not know how sharing so openly about her life would resonate.  Somehow our story is relatable to so many despite Sienna’s unique and challenging journey. If we can touch one mom that wants insight into the unknown realm of autism, someone needing to feel inspired from having a seemingly unbearable day, and ultimately knowing we are not alone. We are here with you, we are fighting this fight alongside you no matter how different we may all be. There is enough love to go around and my hope for our page is to continue to spread that love while raising awareness to children with autism and special needs.

We have built beautiful friendships, through the IG page. Sienna’s best friend, a fellow fashionista, Ashalina lives in LA and when we travel down down for photo shoots we spend time with her. Their faces light up when they see each other and are definitely showstoppers when they hit the streets together.

Posh Kids Magazine has been a huge support system for Sienna and myself. Maximo Hamilton wrote a beautiful letter about us in the May issue and we went on to walk the runway together hand in hand this past September. I also met one of my best friends Leslie Rodriguez through the magazine. We work closely with wonderful shops that Sienna can show her fashion side!  She really loves it! Way more fashionable than me as a child and maybe even now. All of the amazing looks in this article were from Little Rags and Riches (@lolkidsarmonk). The owner of the shop is a sweetheart and adores Sienna. Airfish is the amazing designer behind the Ariel red bow dress featured in this story and Sienna has become so fond of her.

We also had the honor to meet and shoot with Wendy Horton and her beautiful daughter Chloe. From the moment Sienna met Wendy, she loved her. She ran to her after a couple shots and gave her the biggest hug and kiss. All day she wanted to be held and was so affectionate. Chloe made Sienna’s whole day by playing with her, making her laugh and snuggling all while shooting. This family is so special and we are thankful to have them as our friends. There is support from all around the world for her and I am blown away. I think it all comes down to people are put in our lives for a reason that is beyond me and is a truly a blessing.

This has been the age old question since the moment Sienna was born. I really do not have an answer for that other than in one year I know she will become more and more herself. She will have more skills that can help her navigate her everyday life, be eating most of her meals by mouth and have some basic communication skills. We set goals for her constantly and revise them as needed. She continues to surpass our expectations and blows me away every day.

If I can have my head in the clouds a little bit I would like to say that in five years Sienna is a working model in the industry representing children with special needs. The world is changing, being different is the new norm and it is a time in our lives that she has a gift to show people that having a disability is not a weakness but a superhuman strength.