For months—if not years—I tried to ignore the signs.
It was easier to make excuses. It was easier to brush them off. It was easier
to assume that the behavior patterns I was seeing in my son were all related to
Down syndrome or simply personality. But no matter how hard I tried, my
suspicions grew…
As a two-year-old, one of Benjamin’s favorite pass
times was to sit and twirl his little high-lighter yellow, stuffed gorilla in
his chubby, little hands. He would study it from every angle, entirely absorbed
and fascinated. It was pretty darn cute, though we always tried to encourage
more interactive play. As a seven-year-old he still continuously seeks out
plush toys (monkeys and Elmo are his personal favorites, but anything with
limbs will do) so that he can obsessively twirl them or chew on their limbs. It
is no longer cute but concerning.
As a three-year-old, his fascination with light-up,
musical, baby toys and the spinning of his See-n-Say, seemed age appropriate
for his current level of play. He loved the repetitive patterns of the sounds
and lights. As a seven-year-old, his interest in toys has not progressed, and
he his favorite toys remain the same. They have become the common background noise
in our home.
When Benjamin was only a few years old I would attend
play dates with him so he would have the opportunity to be around other
children. He showed little to no interest in them, but I chalked it up as his
young age and current developmental level. After years of opportunity for peer
interaction at school, and now the presence of younger siblings at home, he
still displays little to no interest in playing with other children (unless
they can sing him “Wheels on the Bus” with the hand motions)! So much of the
time he seems to be off in his own little world.
For so long I have been aching to hear my son say
“Mama,” or any purposeful word for that matter. As the years slip by, his
non-verbal state becomes more heart-breaking, but I continue to hold onto hope
that one day he will speak.
When the repetitive hand-flapping surfaced a year or
so ago, my suspicions grew even more. As a member of various Down syndrome
support groups on social media, I was also becoming increasingly aware that our
life with Down syndrome looks VERY different from others. But still, I
struggled to admit my concerns. I was afraid that giving voice to them would
solidify them, and was I ready to face that reality?
Finally, I realized that I was being selfish. I wanted
to resist what I was sensing because I didn’t want to deal with the pain that
may result. Benjamin is my son whom I love with all my heart. Nothing will ever
change that, and understanding what is truly going on with him will make it
easier to give him the help he needs. So, with a deep breath and a new resolve
I told my husband, “I think we should have Benjamin tested for autism.”
There... I said it…I can’t take it back again. Shawn
was surprised and resistant at first. He had been making the same excuses. He
feared facing a dual diagnosis as well. I explained to him my reasoning, and
before long he relented and even supported the new quest.
Where to begin? I began by contacting the pediatrician’s
office, requesting a referral for testing. I was shocked by the response I
received. “There is no reason to test Benjamin for autism since he already has
Down syndrome. It wouldn’t change anything.” EXCUSE ME!!! At best this response
was outdated ignorance. Not to be deterred I reached out to the local support
group. I was referred to a child psychologist who would not require a doctor’s
referral and whose services would be covered by Benjamin’s insurance. Thus,
began a several month process--largely due to scheduling gaps caused by his
full caseload.
There was the initial consultation with my husband and
me, there were mountains of paperwork and questionnaires to be filled out,
there was a one-on-one observation session with Benjamin and the psychologist,
there was a joint observation session in which my husband was present and able
to answer questions, and finally, there was the ending consultation that I
attended while the psychologist reviewed the official results with me. This
last session was less than a week ago at the time of this writing. Going in, I
expected him to tell me that Benjamin is indeed on the spectrum, but I was
hopeful that it would be a mild case. It was both surprising and disheartening
to hear him say that my son has autism spectrum disorder level 3—the highest
level. He did assure me that this can change as our son grows and develops and
as we continue intervention services with him. But still…my baby boy is faced
with another daunting hurdle after having been through so much since he was
born.
That evening after Benjamin was asleep I snuck into
his room and lay down beside him. I held him, and kissed him, and prayed over
him. I told him how very much I love him. He is still first and foremost my
son. A new diagnosis does not change that and never will…
This is the same little boy who opened my womb, giving
me my first positive pregnancy test after over two years of trying and countless
tears of longing to conceive, finally making me a mother…
This is the same little boy who flooded my heart with
an intensity of love and a pain I never knew was possible when he entered the
world fighting for his life…
This is the same little boy who defied the odds and
was nurtured at my breast for over two years…
This is the same resilient little boy who has overcome challenges both medical and developmental, all the while teaching me that what
others may perceive as little things are cause for big celebration!...
This is the same little boy whose favorite things are
his See-n-Say, “Wheels on the Bus,” Elmo, and stuffed monkeys, (not to mention
food!)…
This is the same little boy who has always loved to
have Mommy sing to him as he holds onto my neck and bobs up and down, dancing
with delight…
This is the same little boy who has flooded my heart
with joy every day with his sweet smile, contagious laughter, and affectionate hugs…
This is the same little boy who re-ignited my passion
for writing and became the inspiration for my first book Reflections from Holland: A New Mother's Journey with Down Syndrome…
This is the same little boy who has given my husband
and me the opportunity to connect with a beautiful community of people over the
years who we may have never met otherwise…
When Benjamin was a newborn fighting for his life in
the NICU, we knew very little about Down syndrome. So, what did we do? We began
to educate ourselves. We allowed ourselves to grieve. We reached out for support.
We prayed. And above all—we LOVED our son. We took to heart the wise advice
from a dear friend to “Celebrate your son every day.”
We are now at a new crossroads with Benjamin’s new
diagnosis. Presently, we still know very little about autism. So, what will we
do? We will begin to educate ourselves. We will allow ourselves to grieve. We
will reach out for support. We will pray. And, most importantly, we will
continue to LOVE our son. We will choose to celebrate him every day, through good
times and bad. After all, at the end of the day, Benjamin is still our son, and
he is enough!
