Vaughn was diagnosed with Autism Spectrum Disorder in July
of last year. I am still struggling a little with the label. I don’t want him
to ever have a label other than the Son of the Most High and yet we need the
help to get the ongoing services that he needs because being a preemie just
doesn’t do the job.
ASD means something different for each family as it is a
spectrum disorder and individual’s fall on such different places on the
timeline that on occasion it can be hard to diagnose. For years Vaughn has been
behind the typical developing timeline and we assumed that it was because he
was born so early and so small but the time came a year ago that we had to Acknowledge that Something was Different.
It was time to get him tested and confirm, that since the boys are identical
twins that Asher didn’t fall within the same category.
We had the initial conversation with our Pediatrician back
in December of 2015 asking for a referral to the CDU at Children’s. She was
hesitant at first but we brought along our friend and my advocate Michelle to
help me communicate our expectations for the boys care (Michelle is an SLP). We
waited for 6 months on the wait list before I called to try to push up our
evaluations as I wanted an answer before pre-school started in the fall. I
instantly like the MD and Psychologist that we worked with and don’t feel it is
too much of an exaggeration to say these two doctors became like family to me.
We had Vaughn evaluated at one appointment, then Asher evaluated and then Jerad
and I drove down to Parker for the results meeting. The Psychologist let me sit in on Vaughn’s
Autism testing so I knew when we left that day that he would receive that
diagnosis and they didn’t even test Asher for ASD so we knew that his brain was
developing more typically. Jerad and I talked and talked about the meeting,
prepared and prayed and yet it didn’t matter how prepared we thought we
were, hearing that your son has a disability crushes your soul.
The Doctors presented us with some additional diagnosis’
some of which are not 100% confirmed and honestly I am not sure that we will
accept. I was encouraged by our Pastor that this is a divine opportunity to
dream the dreams that God has for Vaughn and have promised myself that once
some of the grieving drifts away that I will, dare to dream big God size
kingdom advancement dreams for our family.
I will not be embarrassed by ASD and am learning how to
parent through a whole new filter. We have established house rules and visual
schedules that for this type A Mom, is really a joy
I started to ask God WHY again, Why Autism after we worked
so hard to deliver these babies and then bring them home to grow and thrive
into the gentlemen that You created them to be and had to stop myself. Because
it does not matter WHY. This is the journey we have been asked to walk and I
will do my very best to reflect Jesus in it. Vaughn has opened doors for us
that other- wise would be closed, to meet people that are uniquely created and learn
from them.
Asher is thriving and developing typically and we couldn’t
be more happy that his hard work is paying off. We did have an IQ test done and
though he did fall below the average he has lots of room to grow and learn and
develop just as God intended. Asher is so incredibly compassionate… I just
can’t put into words how mercy hearted this young boy is. I am not sure where
he learned this characteristic but I do know that it is a reflection of our
Heavenly Father. He was made in His image so I shouldn’t be surprised but I
just adore this personally trait that He blessed Asher with. I truly believe
that they are twins because He just knew that this road would be difficult and
challenging and Vaughn would need a twin brother to walk along side him. Asher
is a role model for Vaughn and though he is still a 5 year old boy and has
times of pushing the limits, he is exceptional at seeing his brother’s needs
and helping develop coping skills. Social interaction can be hard for Vaughn
but in our home, where it is safe, they play together in a way that will always
be just theirs. They get each other and for moments at a time, I forget that
Vaughn has a different future then Asher. I forget that I need to be overly
prepared for the next transition and how to try to avoid a melt down. I don’t
have to think about how the environment might be over stimulating to Vaughn and
how we can set him up for success as we experience a new adventure.
I am not entirely sure why we have decided to share all this
other then we want to continue to share the milestones that the boys achieve as
each day has become a reward and a fight to develop the character of our
Testimony Twins. The boys recently had their 5 year old check up and it is with
great joy that they have “graduated” from the special care clinic at Children’s.
They are on the growth charts and thriving!
In some sense, I feel like we survived, we made it through
the first obstacle and we are on to the next big thing. We are diving into the
world of ASD and learning so much about behavior and how to personalize our
parenting to best fit both of our son’s lives. We spend hours each week in
different therapy’s and have the privilege to meet some very gifted therapist
and doctors along the way. We have been granted a key into a whole new
community of people that not only bless our lives but my prayer is that one
day, we can bless theirs in return.
We are constantly asking the boys what they are thankful
for… and when I picked Vaughn up from school last month, one of his teachers
pulled me aside to show me a Thankful Turkey that Vaughn made and on it, one of
the feathers said “me”. His Teacher asked him 3 times to make sure that he
understood the question and he did… what great perspective on life. We are
created to be grateful and I think being thankful for the life we have been
given is an outward expression of an inward faith.
Jerad and I have constantly strived to be different, to make
sure our family was set apart for God’s desires and our prayers were answered
in such a unique and honoring way. We have knowledge and understanding that can
be used to bring about hope. We can offer hope in a world that is in desperate
need of just that!
We have Acknowledged Something’s Different and we accept it.
My goal as a Mother hasn’t changed since the moment Vaughn and Asher arrived. I
will raise God fearing gentlemen who love the Lord and others, it just might
look a little different.
