Before I dive into what has transpired since this past
March in the life of our family, I want to begin by making a disclaimer, of
sorts. First, having a child with Autism
Spectrum Disorder (ASD) and attempting to understand and navigate ASD is a
whole new world for us. We are still very much rookies in every way, and therefore,
I may use some words, phrases, or expressions in ways that might not be
“politically correct”, but please know
that I am being real and authentic, and don’t mean any harm or insult. My heart
is to share our experience for the Glory of God and in hopes that he might use
our story to encourage others. Second, the
decisions that Zack and I have made for our family have been prayed over for
months, through tears, anger, sadness, and ultimately peace, trust, and faith
in the Lord. They have not come lightly, and though everyone may not agree with,
or understand our decisions, as Luke’s parents, God has entrusted us with
earthly authority over his precious life, and we have sincerely sought God’s guidance
and wisdom for the decisions that we have made for Luke and our family. We greatly appreciate everyone that has prayed
on our behalf these last few months.
On a beautiful March afternoon, Zack and I, along with our
son, Luke, found ourselves in Fannie Mae Dees Park, or “Dragon Park” as it is
known to the Nashville locals. While we love Nashville and have visited several
times, this visit was to be different than the rest. The next morning, we had
an appointment to have Luke evaluated for Autism Spectrum Disorder at the Vanderbilt
Kennedy Center. Our journey here had
been a God thing, as just a few months ago I sat in our pediatrician’s office
and heard words that though slightly anticipated, still were difficult to here-
“Luke needs to have a formal autism evaluation”. I say anticipated, because by the
time Luke was 18 months old, we knew he was a little different than other
children his age. He had a keen ability
to recognize and manipulate numbers, letters, colors, and shapes, often times
being able to solve problems and manipulate them in ways that were well advanced
for his age. He also enjoyed engaging in his own world, with his numbers, letters
and other toys, much more than he enjoyed engaging with people. He was, and is,
an incredibly loving, sweet, and fun little guy, and he enjoys a tickle fight
and to wrestle just like any other child- but we just knew something was different.
By the time he turned two, some other red flags began to emerge. His speech was
definitely delayed- though he could say many individual words, he rarely, if
ever, used them in a conversational manner, or to engage anyone socially. He
didn’t acknowledge most people when they tried to speak to him or interact with
him, or if he did, they had to try many times to get his attention. Again, we knew was super smart, so we thought
maybe he was just going to be a little different….but he also lacked the appropriate
body language you would expect for most children his age. He didn’t nod his
head or use gestures, and he failed to respond to his name being called most of
the time, or to follow my lead when I pointed at an interesting object. I
instinctively knew from my education background that these were all red flags
for autism, and knew it was something we needed to discuss with our pediatrician.
And so we did. Our pediatrician did a quick screening, and
felt that it would be wise to refer Luke for a formal evaluation for Autism. He
warned me that the current wait time for such an evaluation was close to one
year, but that in the meantime, we should go ahead and get started with some
early speech intervention through First Steps. I immediately arranged for an evaluation with
First Steps, and also decided not to settle for a one year wait for an
evaluation. I began to do some research and attempted to find other agencies
and offices that performed evaluations besides the one we had been referred to.
I found lots of long wait times, but didn’t give up. I ran across something
called the Autism Care Network, a network of children’s hospitals and clinics
across the country that bring together leading children’s
hospitals and academic institutions to develop best practices in clinical
care. The closest to us were Cincinnati Children’s Hospital and Vanderbilt
Children’s Hospital, so I started there. Unfortunately Cincinnati was only accepting
new patients from surrounding counties, and our county didn’t qualify.
Vanderbilt was accepting new patients, but the wait time was several months. However,
there was an exception- If we would be willing to be part of a research study
involving comparing the results of evaluations done through telehealth versus
in person, then they would be able to see us in just a few weeks. I didn’t even
hesitate in saying, “yes!”. We would travel to Nashville a few weeks later for
both a virtual evaluation and then later the same day an in person evaluation,
and get a full report that day. I was elated and so grateful. God had already
began to answer prayers and provide for Luke and our family.
Dragon Park, March 2021
So that’s how we
ended up in Dragon Park in Nashville on a beautiful March day. After a nice
dinner downtown that evening, we retired to our hotel and to prepare for a day of
unknowns for both Luke and us. The next morning, Zack dropped Luke and I off
for his evaluations (because of COVID, only one parent could accompany Luke). Thankfully, Zack was able to facetime with us
for much for the evaluation. The virtual evaluation was first,
and as I expected, Luke failed to interact virtually whatsoever. We then went
into a different room and waited for the in person evaluation to begin. Our
evaluator, Amy, was so kind and compassionate. She did manage to get a few
smiles and words out of Luke, and was very patient with him throughout the several
hour session. She put Zack and I at ease, and she is still a valuable resource
to our family. At the end of the
evaluation she took some time to complete her paperwork, and then she spoke
very softly but solemnly to Zack and I. I can still remember exactly what she
said as she looked at me with such kindness in her eyes. “I don’t know what you
were expecting to find out today, but I can tell you with 100% certainty that
Luke should be placed on the Autism Spectrum”. She then went onto explain why
Luke didn’t just have a speech delay and helped us understand his diagnosis.
She felt that at this time, he was extremely impacted by his symptoms in terms
of social and communicative impairments, and though she couldn’t tell us a firm
prognosis, she gave us much hope by pointing out that Luke’s cognitive
abilities were strong, and that he was verbal, even if his speech and
conversational language skills were extremely delayed. She praised us for
intervening early, as she helped us understand why early intervention was so crucial
for any child with autism (that can’t be understated). She also shared with us
some of her personal story, including of her son that was diagnosed with ASD
and the amazing progress and strides that he had made over the years with the
proper therapies and interventions. We thanked her so much for her help, and the
rest of the staff warmly told us goodbye as we made our way out of the office.
On the drive home, Zack and I sat mostly quiet for a long
time while Luke entertained himself in the backseat. I think we both knew that this
had been a life changing visit to Nashville. As we sat quietly, we were processing,
thinking. Though we were just embarking on this lifelong journey, we quickly recognized
that the life we had imagined for Luke was going to much different than what we
had planned. My mind was racing. I was overwhelmed. I began to make a mental list of all the
resources I would need to secure for Luke. Amy had been very helpful in
recommending resources for us as parents- books, online trainings, etc. She
encouraged us to continue speech and occupational therapy, and highly
recommended a therapy that I wasn’t familiar with, Applied Behavioral Analysis
(ABA). One thing that Zack and I both
agreed on before we made it home to London was that we were committed to doing
whatever we needed to do to help Luke reach his full God given potential, and
we would do it together. “Together” became
a very important word for Zack and I, one that we have held onto through these
last few months, through the best and probably most difficult times of our married
lives. It would only be together, as husband and as wife, and as God as the
head, that we would make it through the challenges we would face over the next
several months.
We vaguely shared the news with our family. It was still so
new and difficult for us to process that we weren’t quite ready to get into all
the details with them just yet. There was a strong hope among our family that
Luke just had a speech delay and was very smart, different, but not in need of
any formal diagnosis and the therapies that would accompany it. Over the next few days, we would have
discussions with our parents about his diagnosis, and we had a family meeting
with our kids one evening to explain Luke’s diagnosis to them as well. It was
going to be a learning process for us all, but one that God would use, and
continues to use, for his glory and our good.
Over the next few weeks I did my best to educate myself about
ABA therapy. After the reading and research I had done, and after hearing from
other families about the benefits their children had experienced, I agreed with
what Amy had told us about the benefits of ABA therapy, and I began the process
of trying to find the appropriate ABA therapy for Luke. I quickly found that
securing this type of therapy wasn’t going to be nearly as easy as it had been
to find the appropriate speech and occupation therapy that Luke needed. In fact, the options in our area were, and
continue to be very limited. I found waiting lists dating back to 2019,
insurance roadblocks, and agencies that could offer a few hours a week of
therapy, but not anything comprehensive like was indicated for Luke by
Vanderbilt. Zack and I decided to continue searching and to see what type of
progress Luke could make with speech and occupational therapy. He also would
begin public preschool when he turned three in October, so we were hoping that
this would help with his social engagement and communication as well.
Over the summer we were blessed to work with wonderful speech
and occupational therapists, and we saw Luke make progress with verbalization
in terms of learning more words, and being able to ask for some basic needs
when prompted, mostly related to food. His ability to understand and manipulate
numbers continued to grow, and basically overtook all other interests. One of
his favorite summertime activities was to write numbers on the trampoline with
sidewalk chalk. I could ask him to write any number- 75, 36, 49, etc. and if he
was willing to deviate from whatever he was doing, he could write any number I
requested! Though we were thankful for the areas of progress we did observe,
and for the amazing therapists he worked with through the summer, there were
certainly areas, mostly in Luke’s behaviors and in his sleeping, that had began
to deteriorate. It became very difficult to predict what would upset him and
cause a meltdown or send him into an emotional downward spiral . He was very
much insistent on the same routine each day, but sometimes even adhering to
that routine wasn’t good enough, and he would become overwhelmed with anxiety
and despair. He struggled with any change to his environment and to adapt to
new environments- the simplest of transitions was a daily struggle. It was heartbreaking
to watch our sweet boy deal with these big emotions and not be able to help him.
Many days we just felt helpless and could only hold and console him through these
difficult times. His sleep deteriorated to levels that I could never have
imagined. Those who know our family well know that Luke has always struggled
with sleep. After receiving his diagnosis, his sleep struggles began to make
sense, as over half of children with ASD have some sort of sleep disorder. In
getting acquainted with other families in the Autism community, my heart breaks
for some of the sleep struggles their children, and in turn, parents endure.
For Luke, some nights were full of hours of crying and screaming, with me
helplessly sitting with Luke, trying to understand what was going on. On those
nights, I would often find myself crying with Luke, while Zack would be in our
bedroom praying for us, as Luke responded ever more harsher if Zack would try
to help. Other nights, Luke would wake multiple times, not upset, but simply with
his mind racing as he would recite the alphabet, count to 100, or mimic other
sounds and phrases his toys would make. Other nights, he would awaken but could
easily be calmed back to sleep in just a few minutes. Every night was
different, except for one aspect- I knew Luke wouldn’t sleep all night long. At
some point, I knew we needed to seek help with the sleeping aspect, and though
I had been resistant to involving medication, we had exhausted almost every
other avenue of help. So, at the advice of our local pediatrician and the
developmental pediatricians at Vanderbilt, Luke began a very low dose of
medication to assist with sleepiness. In about 3-4 weeks, the very difficult
nights of several hours of waking decreased, and though currently no night is
perfect, we were and are thankful for this improvement.
As the summer came to a close, I considered the struggles
that Luke was having, and recognized that though speech and occupational therapy
had definitely been beneficial, and though preschool would provide exposure to
social situations with other children, Luke still had significant needs that
just weren’t able to be addressed by these therapies alone. I remembered Amy speaking
about early intervention, and was reading on a daily basis about the success
other families were having with their children and ABA therapy. I was convinced after being with Luke day
after day and witnessing how his behavior had changed, after hearing from
multiple families from across the country, and after speaking with doctors from
Vanderbilt and Cleveland Clinic, that ABA therapy, combined with speech and
occupational therapy, would be in Luke’s best interest. The only issue was that
the closest centers that could offer the comprehensive therapy that Luke needed
were in Richmond, Lexington and Louisville, and it just wasn’t feasible for our
family to commute to these locations daily for several hours every week. I
began to realize that if we really wanted to take seriously Luke’s future and
his needs, moving where he could receive a combination of these therapies would
be necessary. My heart was torn because I knew what this would mean for our family-
a move away from friends, family and a community we all loved. I also knew what
it would mean for our parents, who love our children so well. There was no
question it would be a huge sacrifice for our family to relocate. But the
alternative, in my mind, meant not giving Luke every opportunity and chance to
thrive, and as his mother, that was not an acceptable option. Luke had both the
most to gain and lose in this particular situation.
I began to share my concerns and heart with Zack regarding
the importance of therapy for Luke. He, too, had noticed changes in Luke, and
though he agreed that Luke needed the therapy, he didn’t think that moving was
in our family’s best interest, at least at the current time. Finding out God had
blessed our family with new life certainly seemed to make moving even more
complicated, and Zack remined me that we depended on the help our of parents to
transport our older kids to different activities, to help out around our home,
to give us a break from to time, etc., and he wasn’t sure how we could make
everything work without them. I agreed, and readily admitted that I wasn’t sure
how it would all work either, but I just knew in my heart that this was what
Luke needed, and that the earlier we could intervene, the better. I told Zack
that I trusted that in God’s sovereignty, he could put all the pieces together.
And He would have to do just that.
In the weeks that followed, Zack and I continued the
discussion about moving, and Zack’s opinion didn’t change much. One evening we
were taking a walk and having a discussion about therapy, and Zack just stopped
me and said, “Rebecca, if we are going to move, God is going to have to move
us, because I just can’t see how it’s going to work. That’s just the way it is”.
I’ll admit, I was devastated and saddened,
and tears instantly began to flow. I know Zack, and I know the love he has for
his family, and his commitment to our well being. I knew he was speaking from a place in his
heart what he thought was best for our family, and I wasn’t angry with him. I
just prayed that night that God would provide what we needed, whether it was at
our current location, or someplace and in some way that we currently couldn’t
see or understand - “And my God will meet all your needs according to the riches of his glory
in Christ Jesus.” Philippians 4:19.
Though not on the same page about moving, Zack and I did
agree and were interested in at least checking out what a therapy center would
be like for Luke, and this was something I had been looking into for some time.
So, a few weeks after our last conversation about moving, Luke was scheduled
for a functional behavioral assessment at a highly recommended center that had
offices in Lexington and Louisville. This would give us an idea of what a treatment
plan for Luke would consist of, a more accurate understanding of how many hours
of therapy would be recommended, and allow us to see the type of environment
that he would be in for ABA therapy. My mom and I took Luke to the center. From
the time we walked in, everyone was so kind, positive, and helpful.
Surprisingly, Luke didn’t respond as he usually did to a new environment and
new people, and he stayed fairly calm. The BCBA (board certified behavioral
analyst) that worked with us was wonderful. She was a former public preschool
teacher and had a tremendous amount of experience working with children in the
classroom and children with autism. She did a great job of explaining
everything she was doing with Luke and the rational behind it throughout the
session. Luke played with and discovered lots of new toys, visited their gym
and jumped on the trampoline, and overall had a great time. At the end of the
visit, she explained that it would take her several weeks to complete her
evaluation of Luke and to begin creating goals for a treatment plan, but she
definitely felt like he would benefit from beginning comprehensive therapy
(meaning anywhere from 15+ hours a week) as soon as possible. She explained the
research and logic behind early intervention and the reasons for the intensity
of the therapy early on, and wasn’t afraid to answer my tough questions. I felt
like God used that experience to fill in so many blanks and answer so many
questions. I was excited to call Zack
and tell him about what a great day we had. He was very receptive to what I
told him and I could tell he was thankful that we had gone.
Later that night, Zack and I were on one of our nightly
walks. He had seemed to have a different attitude, one that was very kind and
tender when we spoke about Luke and therapy that evening. As we were walking,
he asked me out of the blue, “So, how have you been praying about us moving lately?”
I told him that I had been praying that God would give Zack wisdom and that God
would give him confidence in the Lord to know that He would provide all we
needed, even if we couldn’t understand how it would all work out.
“Why?” I asked. Zack was quiet for a few seconds, then
proceeded to tell me that a couple hours after I had called to tell him about
our day at the therapy center, his boss had called him into his office. His
boss was very apologetic, but told Zack that his position was being eliminated-
immediately. It had nothing to do with Zack or his job performance- likewise
Zack had only helped to make many technological and economical improvements in his
role and time there. However, the board no longer felt his position was
necessary, and felt that combining his role with another position would be “more
efficient”. It was to be effective immediately.
Upon hearing this news, my mind was racing! My initial
reaction was shock, but almost immediately I was filled with an overwhelming
sense of peace, joy and maybe even excitement. Was this not what we had been
praying for? A clear movement by the hand of God. My mind immediately recalled
Zack’s words only a few weeks earlier, “….God is going to have to move us…”.
Well, God had clearly done so, or at least had set the ball in motion.
After asking a few questions for clarification, and taking a
few minutes to absorb all that Zack had told me, I immediately told Zack that I
felt such peace, that I wasn’t worried about our future and that likewise, I
was grateful because God had moved, and that was what I had been praying for.
Zack agreed, and though he was of course in shock initially as well, he even
told his boss that this was in a strange way an answer to prayer (I’m sure his
boss was confused!). God had given him peace, and he knew that this was God’s
response to his mandate about moving.
Since that night, we have been continuing to seek God’s will
and path for our family. The last few weeks have been a whirlwind of preparing for a future that we are honestly completely and totally relying on the Lord for! We don’t know where we will end up, but Zack has applied for several jobs in areas that we know have the proper therapies for Luke, are as close to home as possible, and that could provide a career that would provide for our family and that Zack would thrive in. God has been incredibly faithful as Zack has already had several interviews that have led to some “final round” interviews in the next few weeks. We trust that just like God has always provided and led our family, he will continue to do so. This may be the most logistically complicated and crazy move yet, but thankfully, not even our big crazy family with all our moving pieces is too much for Him. This experience has been a tangible, “real life” way that our big kids have been able to see God answer prayer,
even though it wasn’t the exact answer they were hoping for. I am so proud of
our big kids and the way that they have served our family through caring for their
younger siblings- certainly not perfectly, but they
do truly love their brother Luke, and they, too, are able to see the big
picture for our family and for Luke. We are all committed to walking this
journey alongside Luke.
I certainly don't want to make myself, or our family sound like we are always trusting the Lord and never doubting in His plans or purposes.... there are so many days when I worry, doubt, fear and
sometimes just feel sorry for myself, Luke, and our family. There are days when
I long for Luke to be able to just be a carefree kid- no fears, anxiety, and
meltdowns over things that seem so trivial, no routines he has to follow, no
walking on eggshells, worried about what might set him off next. There are days
when I wonder if I will ever have the chance to have a conversation with my
son, to hear him answer a simple question, for him to tell me how his day was,
all about his favorite toy or what he had for lunch. I long to see him smile or
say hello to someone as they walk in the door and greet him. There are days
when I grieve, wondering if Luke will ever know the beauty and treasure of
friendship and relationships in general. I have watched other children at
church and in his preschool class approach him and say, “Hi Luke!” to which he usually
won’t even turn his head in their direction or acknowledge their greeting at
all. I wonder if he will ever know what
it’s like to have a crush, or to fall in love. I wonder if he will ever be able
to experience being part of a team, a club, or any type of group activity. I ponder these and many other things, and in
all these things, I have so many hopes and dreams for Luke, because of my great
love for him. Zack and I love our sweet
Luke so very much, and the joy he brings to our lives is immeasurable. He is so
precious to all of us. And if, indeed, none
of my hopes and dreams for Luke ever materialize, and if God has a different
purpose for Luke’s life than what we desire, then I must say, “To God be the
Glory”, as His plans are greater and higher than our own. My desire is simply
to love Luke the best I know how, and for Luke to know one day that his mom,
dad, and family loved him to their fullest and best capability, with the help
of God our Father.
Though the last 7 months have been some of the most trying
for our family, the Lord has been so near to us as we have had to depend on him
for each day, sometimes each hour. I am convinced, now more than ever, that as
a child of God, there is no one else whom I would rather have guiding and
directing my life and family than the one who created me in His image, gave me
a purpose, and has numbered my days, already knowing every thought, experience,
and care I will ever have.
I pray that in someway hearing how God has been so faithful to our family will encourage you, whatever circumstance or situation you may find yourself in. May God bless you with his presence this Christmas season!
“Whom have I in heaven but
you? And earth has nothing I desire besides you. My flesh and my heart
may fail, but God is the strength of my heart and my portion forever.”
Psalm 73:25
