We were sitting in the waiting room of the University of Florida Center for
Autism and Related Disabilities (C.A.R.D.) in Jacksonville, Florida in August of
2010. I was holding my 17 month old son as my husband sat next to me rubbing my
back. Neither of us spoke. Our hearts were heavy with worry and fear. We were
hoping for answers that day, so that we could map a way forward...

 The Caterpillar's Story

 On April 5, 2009 I gave birth to twins: a boy and a girl. I had developed
severe preeclampsia and was induced at 35 weeks.  My son was born at 7:14
pm., and his sister came almost an hour later at 8:09 pm. I was exhausted and
scared. I remember laying there as they took each baby into the next room to
weigh and measure them. The good news: both had great AGPAR scores and could go
straight to the newborn nursery. Relief began to slowly wash over me. My babies
were fine. They were taken off to the nursery and I was told they could room
with me starting the next morning. The day was bittersweet. I was so happy my
babies were finally there, but I was heartbroken that my husband was sent off to
four months of training the day before I gave birth. As I lay there in the
hospital bed that night, all I could think about was my family - my husband and
my brand new babies. I couldn't wait for all of us to be together.

 The next morning, I waited anxiously for the nurse to bring the twins to me.
I finally received the first bad news of the day around 8:00 am: the twins could
not room with me, because I was on strict bedrest for 24 hours due to the
preeclampsia and medication I had to take for it.  The twins had been born
over twelve hours earlier and I still had not been allowed to even hold them
yet. It was torture. I then got a horrifying call from the newborn nursery. My
son had aspirated on baby formula and had stopped breathing. He was revived and
was rushed to the NICU. I then found out that my daughter was unable to maintain
her body temperature and she was rushed to the NICU as well. 

I was wild with anger. No one could tell me how long my son had not been
breathing. No one was giving me any answers of any kind. I was restricted to bed
and my babies were in intensive care. I remember laying there and crying all
day. I finally fell asleep from exhaustion and slept for ten hours straight. 

The next day, I was taken up to the NICU in a wheelchair and was given my
daughter to hold. She was the most beautiful little angel. I couldn't believe
how tiny and fragile she was. I was amazed by that little creature.  I was instantly in love.

They would not allow me to hold my son that day. He wasn't waking for
feedings and they had inserted a feeding tube a few hours earlier. I just sat
next to his incubator and rubbed his tiny foot. He looked like a little old man.
I caressed his face and kissed his little hand. I wondered if he would be ok. 
 
When I was finally able to hold him the next day, I hesitated. I was SCARED
to hold him. SCARED he was not going to make it.  SCARED to get attached. I
called my sister-in-law and she told me, "I know you are scared of losing
him...but you need to hold him. He needs to know his mommy is there for him." So
I did. I held him and rocked him as long as I could. I cried as I kissed his little head. 
I was instantly attached - I was instantly in love. 

Growing Pains
 
As the twins grew, we began to notice quite a few differences in the way
they were developing.  My son consistently hit milestones at least three to
four months after his sister. We would joke about our daughter being a "show
off," but with each milestone being missed or delayed, our concern over our
son's development grew. We brought in videos of him waiving toys over his head,
rocking back and forth, and flapping his hands.  At 17 months, his
pediatrician referred him to the C.A.R.D. center for further evaluation.  
 
As we were sitting there in the waiting room, I happened to look up at a
saying they had stenciled on the wall:

 "Just when the caterpillar thought the world was over, he became a
butterfly..."
 

I vividly remember rushing to the restroom to cry after reading that on the
wall. At that point in time, I wondered if his world would be "over." I remember
the fear that every parent who goes through this must feel. Would he be ok?
Would he ever speak? Look at me? Show affection? What would his life be like?
What would ours be like as his parents? Our son had already been through so much
- being born five weeks premature, experiencing cyanosis in the newborn nursery
and being rushed to the NICU, requiring a feeding tube... He could not sit up
unassisted or crawl until he was almost one. He was still in the infant room at
his daycare at 17 months because he was still trying to learn to walk. We knew
something wasn't right. Autism? Brain damage? Something else? So many things
were running through my mind as we waited for our appointment with the pediatric
neurologist.
 
Autism Diagnosis

 The doctor spoke to us, asked questions, looked at the videos we brought, and
attempted to interact with our son. She ran through a battery of different
tests. She then gave us her diagnosis: AUTISM. 

 As we were leaving, I happened to  glance at the saying on the wall again:

 "Just when the caterpillar thought the world was over, he became a
butterfly..."


 I was scared, worried, and confused, but I was glad my little caterpillar
finally had a diagnosis; we had a starting point for our journey.  We
enrolled in the Special Needs Program (we are a dual active duty military
family) and Tricare ECHO, and slowly, and painfully at times, began the
therapies that he needed. 

It has been over two and a half years now since his diagnosis. We have had
our ups and downs - two cross-country Permanent Change of Station moves within a
year, many ABA therapists, fights with public school systems, evaluations,
meetings - the list goes on! He is on a gluten-free/casein-free diet and
receives ABA therapy. My little caterpillar continues to grow and change right
before my eyes.  I see the environment that my husband, his therapists and
caregivers, and I have created around him as his chrysalis. We love him, support
him, and protect him. He is sweet and loving and makes me smile with the things
that he says and does. I firmly believe that early intervention, his diet, and
the protective chrysalis he has around him is shaping him into the butterfly he
is slowly but surely becoming.

    Author

    I am a very busy mom who has three kids under the age of five. My spouse and I both serve in the armed forces and we work hard to find balance between our work and family. Our son has autism, and this blog is about helping our son find is way forward in the world. I will purposely leave the names of my children out of my blogs to protect them due to their ages.

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