Though these are challenging times for our community and so many others, we plan to continue to share the stories of people with autism and their families through Spectrum Spotlights and other content. We hope these will offer a look into the many diverse perspectives in our community, and provide inspiring and uplifting stories when we need it most.

Meet Alivia and Sophia

Spectrum Spotlight: Meet Alivia and Sophia

Revered political leader and philanthropist Nelson Mandela once said:
"The greatest glory in living lies not in never falling, but in
rising every time we fall."

For Sarah, wife of an active-duty United States Air Force Chaplain
and mother to two daughters on the autism spectrum, no quote could
better describe her family's journey over the last 13 years. It
was only through their deep-rooted values that her family was able to
withstand the type of mental and physical setbacks that would bring
most other people to their knees.

Although their autism affects them differently, Alivia, 13, and
Sophia, 7, share similar stories of overcoming adversity to reach
milestones many doctors and specialists never thought they would. Both
have fallen many times, in every sense of the word, but have always
been unwilling to let their medical conditions and autism diagnoses
stand in the way of reaching their full potential.

Learn more about Sophia and Alivia through the words of their mom, Sarah, in this edition of Spectrum Spotlights.

In your experience as a mom of two children on the spectrum, how
important is early intervention?

Early intervention provided our two daughters the best opportunity to
learn and develop to both of their full potentials in life. Both
Alivia and Sophia attended a full-time preschool program, dedicated to
autistic children. Alivia's journey began at 18 months old;
Sophia's journey began at 12 months old. With early intervention
and intense ABA therapy, both of our daughters have overcome and
achieved levels that wouldn't be possible otherwise.

Did you realize something was different about your daughters before
their diagnosis? If so, please share some of your experiences and how
the diagnosis came about.

Alivia was born with severe health issues that caused us to overlook
her autistic behaviors and traits. It was the early intervention team
that advised us that she displayed many signs of autism around 20
months of age. Alivia was a true sensory seeker toddler; she would
chew on everything, spin in circles and flap her angel wings all the
time.

Sophia, as a baby and toddler, was a sensory avoider. She began
displaying autistic behaviors around 8 months. We noticed that she
would avoid contact with other adults and children outside of her home
environment. She would cover her face with a blanket, shake
uncontrollably in public places and display food aversions and
stimming behaviors. Around 10 months, we had her tested by an early
intervention team that labeled her as developmentally delayed. With
that, we had Sophia evaluated by a developmental pediatrician at 14
months old, who diagnosed her with autism.

Tell us about some of the struggles each child faced/faces as a
result of their autism.

Alivia's emotional behaviors cause her the most struggles in
life. She doesn't know how to process her feelings in the same
way as others may, so she can be happy one minute and crying the next.
Alivia can be very sweet or extremely aggressive. She tends to repeat
herself over and over, which becomes exhausting for her. Alivia is
continuing to learn how to engage her peers in an appropriate manner,
for example personal space and acceptable greetings.

Sophia didn't speak until she was 4 years old and was using
simple phrases by the age of 5. This has caused her to fall behind in
her expressive and comprehensive language abilities. Her vocabulary is
enhancing daily but she is still delayed compared to her typical
classmates. She also struggles with her stimming behaviors. Many
typical peers find this behavior odd and clearly don't
understand why Sophia is making these unusual hand or facial
movements. Some children look at her as she is different from them.

How does their autism make them special/unique?

What makes Sophia special is that she's faced many challenges
and obstacles from birth but has continued to fight and push through
adversity. She was unable to walk and barely able to eat or hold down
any food until her second birthday. She didn't say her first
word (momma) until her fourth birthday. But with two years of intense
early intervention and two years of full-time ABA therapy in a
clinical setting, Sophia is now in a general education classroom. Her
vocabulary is amazing, she has friends, loves ballet and playing
soccer! We have so many great hopes and dreams for Sophia's
future thanks to all of the services she has received.

What makes Alivia special is also how far she's come. She had a
neonatal stroke, which caused her to have many medical issues
throughout childhood. At first, her autism was masked by her medical
condition, but she was diagnosed around her second birthday. She
didn't speak her first words until she was 6 years old, but now
talks and reads thanks to intense therapies over the years. Her first
words were "I want chips," which still to this day makes
us laugh. Hearing those silly words put the biggest smile on my face
and made me so happy to finally hear my baby's voice.
Alivia's resilience is simply astounding.

Can you share what it's like to be a mom of two children on the
autism spectrum?

Being parents of two autistic daughters is challenging and rewarding
at the same time. My husband and I pray every day together for
patience and continued love for our family. As parents we learned to
celebrate the little achievements that others might overlook. We
actively engage our daughters in programs and community events that
are tailored for all abilities. As parents we have modified our public
outings and trips around our oldest daughter's triggers; simple
and short activities are best for Alivia. Each day is a mystery on
which behaviors we will be working on to eliminate and to improve for
our girls. The one autistic behavior we wished would just magically
disappear is the repetitive scripts that Alivia says over and over
again. She consistently needs reassurance from us.

If you could give one piece of advice to other parents who have a
child/children on the spectrum, what would you say?

When a parent gets that diagnosis of their child being autistic, my
advice would be to immediately start the therapies and early
intervention services available to your child. This could change your
child's future and help them reach their fullest potential.

How has your family's tie with the military impacted your
children and their needs?

My husband is currently an active duty service member in the United
States Air Force. This is truly a blessing for our family while he is
serving our great nation. All branches of the U.S military have a
destinated program for special needs families called the Exceptional
Family Member Program (EFMP) and The Extended Care Health Option
(ECHO). Our family utilizes both programs by receiving 40 hours a
month of Air Force respite care and in-home ABA therapy for both our
girls. When our daughter Alivia needed specialized medical equipment
including an adapted bike, it was fully covered. Doctor visits and
therapy treatments have no copayments with Tricare prime. We are proud
and honored to be a part of the military family.

Use five words that best describe Alivia to the world.

Innocent. Silly. Adventurous. Life of the party.

Use five words that best describe Sophia to the world.

Kind-hearted. Energetic. Creative. Determined. Achiever.


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