Imagine…
Imagine a blue-eyed, redheaded 3-year-old boy with rosy-red
cheeks, and flawless, fair skin. With a baseball in one hand, and a bat in the
other, he stands ready to start jumping on his tippy-toes and flapping his
hands in front of the TV, anxiously awaiting as the pitcher winds up to throw
each and every pitch. Imagine a daddy
who dreams that one day this child ‘might’ get to play t-ball. Imagine a mommy
who is just overjoyed because her child can finally say, “baseball,
mommy!”
We feel it is
important to share our story in hopes that you understand our journey and the
financial hardship we are in, and will continue to be in, as we care for our
miracle, Clay. Since Clay’s diagnosis, we have committed ourselves to ensuring
that our son receives the best services and support we are able to provide,
even if it means that we continue to incur insurmountable debt. We have
struggled to meet his needs due to our financial constraints and have amassed
more debt which is why we feel that our circumstances make us a good candidate
for this scholarship. Scholarship
assistance would guarantee that we would be able to keep him in ABA therapy
where we KNOW he has the best chance to reach his full potential.
Career Educators
For starters, we are both career educators. Together, we have served in public education
for almost 40 years. We have dedicated
our lives to serving students and their families making sure that other’s
children have the opportunities they deserve regardless of race, creed, or
socioeconomic background. We have worked
hard to further our education and skills so that we could advance into
positions of leadership in our respective fields. We have sacrificed countless hours and
opportunities in our professions in order to fulfill our calling to help
children. Advanced degrees were required
to grow in our careers, which resulted in having to take out student
loans. To repay the loans, we now pay
over $800 per month in loan repayments.
Though these payments are a burden, we have been diligent to pay them on
time, sometimes using lines of credit to meet the needs of our autistic son as
well as other medical bills we have accrued.
Medical Debt
Another factor, which limits our ability to financially
support Clay’s autism therapy needs, is the amount of medical debt that has
been a constant financial burden since the start of our marriage in 2010. David is still undergoing treatment for
Laryngeal Cancer after his diagnosis in 2015, and I suffer from chronic
migraines and endometriosis, which at times can be debilitating, even to the
point of needing emergency treatment to include surgery. We have had to meet the out of pocket expense
on our healthcare plans almost every year we have been together, even before
Clay began his ABA therapy. Most of our
medical debt is currently being paid off in small monthly increments due to our
inability to pay these costs in full at the time of service.
Our Miracle Story
God has been beating on the walls of my heart for quite some
time pleading with me to sit down and write this story. It’s not that I have not wanted to journal
about it, but I wanted to do it justice and give it all the time and attention
it would take to tell the story in full.
Today is the right time as this opportunity has been brought
to my attention and it will require that Clay’s story be shared. Our journey
began in 2010. All who know me will tell you that I’ve always been a
planner. I waited until I was 31 to get
married. David was 40. I knew the “clock was ticking” and wanted to
start a family right away. Six months of
really “trying” passed and I decided that we did not need to wait any longer to
seek assistance as I was already toward the end of prime childbearing years.
Months turned into 4 years and our (in)fertility journey lead us through 6
IUI’s, 2 failed IVF’s, 2 failed FETs, one ectopic pregnancy with miscarriage
(which required a surgery), a very large amount of medical debt, and two huge
broken hearts. However, our FAITH never
allowed us to give up and instead of praying to have a baby, in 2014 we began
praying for God to give us a family. We
had a community of prayer warriors who prayed faithfully that our dream would
someday come true. And, it did!
In the Spring of 2014, we had completed a second round of
IVF but decided it would be best to freeze the ONE embryo that made it through
the process. We decided that we would
wait until the summer to implant because it worked better with our schedules
(as educators). We knew this would be our final and last opportunity to have a
child (other than never giving up and defying the odds that it could occur
naturally), so we wanted to wait until the summer to do the frozen embryo
transplant (FET). However, we are living
proof that God’s plan is SO much greater and bigger than our own.
In late May of 2014, a friend called and asked me if we had
considered adoption and I told her we just were not there yet. Then within a
week, my sister called to ask the same thing.
It was as if God started to plant that seed in our minds. We just had not gone there yet because our journey with IVF still had one last leg to
finish.
In early June of 2014, my sister in Arkansas, who happens to
be a nurse, called to tell me she had encountered a woman in her early 30’s, who
was 8 ½ months pregnant, and was looking for someone to adopt her baby. On June 11, I LITERALLY received the
following text message from my sister: “If the people you know are still
interested in adopting let them know that my C-section is scheduled for the 30th
of this month. It’s a boy.” Just like that, God had answered a prayer we had
been praying for four very LONG years! My heart skipped a beat but I froze...CAN
YOU IMAGINE?
We were scheduled for our FET at the end of the month. I had already started my shots and hormone
therapy. I was in the middle of meetings
at that exact moment and my husband was at a conference. I was in shock. What should we do? By the grace of God, both
of my sisters helped kick everything into high gear. Two days later, we had an
adoption lawyer in Arkansas (where Clay would be born), we got a home study
scheduled, we were making appointments for fingerprinting, and having daily
discussions with the birthmother to be certain this was what she wanted. To say that we guarded our hearts and our
hopes is an understatement. When you go
month after month and ride the rollercoaster of hope and then disappointment,
it is hard to really let yourself be sure of anything. In my head, I did start
to IMAGINE the way life could be with a baby.
With a million mini-miracles in between that first text
message and her water breaking, only NINE days later, our miracle was
born! The birth mom’s water broke on
June 21, 2014 at 5:00 p.m. We threw only a car seat, stroller, and a borrowed
bin of baby clothes into our car and drove (rather sped) 8 hours from Austin,
Texas to Ft. Smith, Arkansas to meet our miracle. In a very lucky and Godly
coincidence, my sister was on-call at the hospital that evening and was allowed
to be there in our place to receive Clay when he was born.
We arrived at 4:48 a.m. on June 22 to meet our precious
little Clay David. He was a redheaded
6.5 lb., eater whose hands seemed extremely large (perhaps someday they could
catch and throw baseballs). He took to
us immediately. We were fortunate enough
to have our own room in the hospital with him.
The birth mom had signed over her rights, pre-birth. We had a 6-day waiting period, then a court
appearance with the judge on day-six, and then Clay was OFFICIALLY FOREVER OURS! So, there we were! I am not sure there is a
word to describe the amount of JOY, RELIEF, and COMPLETENESS that we felt on
June 27th when that judge banged her gavel and gave us the rights to our child.
We were in pure BLISS. We made our way home and were treated by friends and
family with such an outpouring of love and acceptance. We were such a happy little family of
three. Finally, it was all okay…
Clay met most of his milestones in those first few
months. Other than mild gas from the
formula and a respiratory infection at 3 and 6 months, he was overall
healthy. He loved to eat. He was a very happy baby and only cried when
he was hungry, wet, or tired. He was
fascinated very early on with Daniel
Tiger, and he loved to be in the baby swing, or to be cuddled-up with
us. He did not like his bed so we gave in
to co-sleeping at four months. I was just too tired when I went back to work
and needed to get some sleep. This
worked for our family of three.
At six months, Clay primarily wanted to play in his bouncer so
his feet could touch the floor. By 8-9 months, he was crawling and preferred to
sit up. We would find him in the corner,
often times flipping through pages in his Daniel Tiger books. Or, if he was in
his bouncer, his eyes were glued to the TV as long as Daniel Tiger was on. He
only cared for and gave his attention to that one show. At nine months, he was babbling and could say
“hat.” He knew all of his animal sounds and could repeat most of those back
with a “grr” or a roar, but most of them sounded the same. He would wave good-bye, but did not vocalize
much more than gibberish. He enjoyed
playing with his ball and bat. He loved
to chew on toys. I used flashcards to teach him words and he would “sign” or
make motions (mand) for most of the 26 cards I used. When he got excited, he
would wave his arms up and down. We
thought he was just being cute, but we now know it was hand-flapping/stimming.
There was one time I was holding him on the couch and I just
remember getting a feeling in my heart wondering if he was “okay?” Starting
around nine months, when I would drop him off at daycare, he cried every
morning. If we entered a room full of people, he would cry, and would cling
tightly to me. He did not want to go to
strangers. I thought maybe this was just typical, separation anxiety. By 11 months he was walking. At his 1st birthday, he did not
want to interact with others and did not want other people holding or touching
him. He was disinterested in opening
presents and had no response when we sat his birthday cake in front of
him. The next few months, we did not see
much change in his expressive language.
He seemed to understand EVERYTHING we would tell him, but made no effort
to talk or even babble unless he was saying “hat.” I started to panic a little
as the holidays were approaching and I began to worry he would not do well
around my large family. Then, we were hit with yet another storm!
In November of 2015, my perfectly healthy and always
talkative, husband, David, was diagnosed with Laryngeal cancer (vocal cord/throat). He was the 1% - never smoked, dipped, or
inhaled a drug in his life. He underwent
a biopsy, and three days later was in
surgery to remove a tumor on his vocal cord.
In December of 2015, he completed 28 rounds of radiation. About that
same time, Christmas 2015, I remember feeling heavy-hearted because Clay was
still not talking (18 months old) and did not want to play with anyone at
family gatherings. We were wishfully
thinking, “Maybe he’s just a late bloomer.”
Of course, we had no knowledge of his family’s medical history (adopted),
so we were in the dark on genetics. On December 28, 2015 (one month after
David’s cancer diagnosis), we took Clay in for his 18 month well-check and our
pediatrician delivered what felt like a devastating blow…Clay shows signs of autism.
I was devastated. I
was angry, I questioned God…how could this be?
Why me? Why us? Hadn’t we already been through enough? After
my short pity-party, I did what I do best, I got busy searching for answers and
pledged that we would get him the help he needed at WHATEVER cost!
When we started to share this news with family and friends,
we got a lot of push back. People said,
but he makes eye contact, he smiles, he is smart and he understands everything
you tell him. Yes, yes, and yes. Doubt and denial set-in. I called ECI and begged for their earliest
appointment so we could get him tested. Denial is a powerful thing. Even after having him tested, I still did not
want to believe that this was my child’s fate.
I scheduled to see the pediatric neurologist but we were put on a
waiting list. We opted to see the nurse practitioner and she told us not to
worry until he was three years old and still not talking. This gave us a false sense of hope that he
was not autistic. We had no official diagnosis other than the battery of tests
that ECI administered that put him in the “moderate” category based on his
behaviors.
We completed 4 months of ECI (Early Childhood Intervention) therapy (twice weekly ST and
OT) in Hays County and then realized we would need to move back to my hometown
in Bastrop to be closer to family to get help with Clay. It did not take long
to realize this new journey was going to take a village. I’ve always been an optimist and remember
asking Clay’s first speech therapist if she thought Clay would talk by the time
he was 2 ½… she didn’t have to answer with words, I could see the look of doubt
in her eyes. We used every intervention,
method, piece of advice, and insight that we could get to help our son. I sang to him every chance I got. We did flashcards daily. When I got home from work, I went to work
trying to make sure my son was getting what he needed. I fed him a gluten-free diet. He rarely ate anything sweet, and to this day
chooses only water or milk. We ordered therapy toys, we read books about
autism, joined autism social media groups, and we did our best to become
educated on what our world was becoming.
In Bastrop ECI, we gained an OT, ST, and his case manager,
all of whom worked with him 1-2 hours per week (3-6 hours per week total). While our denial kept us from using the word
“autistic”, they all continued to rave about ABA therapy. However, that would
require a diagnosis and a label. Both
working in the public education setting, my husband and I are aware of how
special education works. We knew Clay
would have to be tested and would qualify on his speech delay alone; however,
it became more and more clear with every passing day that Clay was showing
characteristics of aggressive behavior and sensory processing disorder. While
we know it’s one more intervention, PPCD alone will not give Clay everything he
needs to reach his full potential.
Knowing Clay’s 3rd birthday was quickly
approaching, I took him back to the Pediatric Neurologist on May 1, 2017. I could no longer deny what my heart and head
knew - my child was and will always be autistic and he deserved EVERY
opportunity and intervention that I could afford him.
The grief process has had its ebbs and flows. There are days when I feel like “we’ve got
this, we will make it” and others when the anger creeps in and I just want
everything to be “normal.” Then I gently and softly remind myself this
beautiful, amazing gift from God is our normal
and it is going to be all right.
The world of autism is isolating. I have retreated to my
closet or to the shower to have a good long cry. This usually happens after we
attend family functions and I realize my child may never play-along or be like
my nephews. I’ve held a massive lump in
my throat as we’ve left the grocery store and restaurants because his melt-down
is too extreme and I don’t want the stares from adults as they judge me,
thinking that I don’t discipline my child.
While our child has made INCREDIBLE progress, we still
struggle to come to the realization that he may never play on a little league
baseball team, want to play an instrument in the band, or even just want to
play in a group with other children.
Clay is so friendly and loving when he is comfortable in his
surroundings. However, he is still showing
some aggression -biting, hitting, and pinching- when he becomes over-stimulated
and anxious. We have a long way to go,
and we know it. And, yet there are areas
of brilliance. He knows all of his shapes, letters, colors, and numbers. He’s fascinated with boats- he plays with
boats, draws boats, and requests to watch specific episodes of Curious George
with boats.
He went from practically having no words a year ago to
literally talking and using his manners now.
To hear him ask for something and say, “mommy please” at the end is
incredible. I heard him say mommy for the first time when we were saying our
night prayers in mid-March (3 ½). Just
as we have done for two years, we were saying our God Blesses and he said
“mommy.” Something I had only IMAGINED
would happen one day!
Clay has made amazing progress in the
past year in ABA therapy. He’s
progressed from having three words: hat,
dada, ball to being able to mand over 40 signs (now words) in the past 6
months, to now being able to say two-word sentences and repeat (echo) most any
word we ask. ABA gives us a sense of
hope for our child’s social well-being too. And, his little personality is
really starting to shine. Clay’s therapist has sincerely been an answer to our
prayers. He is potty-trained and she
continues to encourage us when the struggle seems overwhelming.
With the help of several family members and friends, my
husband and I have been able to take him to ABA for 6 hours per week. I was
granted special permission from work to adjust my hours. I leave at 7:00 a.m. on Tuesdays and
Thursdays to get Clay to therapy by 8:30 a.m.
What should be a 45-minute drive is an hour and a half with Austin
traffic, but I will not complain because it is for my child! My husband took on
another job (evenings and weekends) so that we can try to afford ABA
therapy. This summer, we intend to have
him in ABA therapy for fifteen hours per week. We will do whatever it
takes. While we are both master-degreed
individuals, we have incurred a lot of debt from IVF, adoption, David’s cancer,
my medical bills, and Clay’s therapy. We
are also still both paying off student loans.
Until one has lived with an autistic child, one does not
know how much time, effort, and money goes into providing the best resources
for them. Yes, we may be in debt, but we
are definitely rich in love. However, love
alone does not pay the bills. When I
heard about this possible financial support, I thanked God that there are
organizations, and people who understand and can empathize with our situation. We do not qualify for any other type of aid
because we make more than the Medicaid allowance. When one looks at our income, you would
assume we should be able to afford therapy. However, we have incurred major
debt, especially due to medical issues. We
would humbly and graciously be very thankful for whatever financial support we
can get. And, if we are not chosen, I
still thank you, for all you do for families just like ours. I do IMAGINE there
is a way that this will all work out.
