Every new family that I meet and get to know seem to always
amaze me by just how ordinary they all are in an extraordinary sort of
way. We each have our challenges, but
those challenges are faced with love and commitment that is only evident in a
situation that is like that of being an autism parent. The Rodriquez home was just like this and I
remember pulling up to where a skateboard and basketball hoop sat in front of
their modest home; their yard was full of the petals of a flowering cherry tree
nearby. As I walked to the door I was
greeted by a young man, who I later learned was the younger brother of the Juan
Rodriguez. Everyone, except Jordan, was sitting on the couch in front of an enormous
television. The light from their sliding
glass door softly illuminated the room and I sat down on the couch next to
Adriana, who I had been looking forward for some time seeing again. We had met previously at other functions that
were hosted by mutual friends of ours.
Although we didn’t know each other all that well, our bond that we share comes from communal experiences of being autism parents.
It is a lonely place sometimes when no one understands or
knows what it is that we face every day and I gladly welcomed her long ago into
an un-judging environment. We all are
doing the very best we can in a situation that is seemingly impossible some days. Autism parenting is often
frustrating and we do our best to walk through it the best way in which we can. Until a person has lived
this life they cannot know the struggles that are faced in a world that is
slowly becoming aware, but often not quickly enough and judging eyes and comments sometimes still follow behind us.
Before we began our interview I was
approached by the youngest family member who made his way over to me and sweetly
took my hand and looked into my eyes.
Little Julian immediately captured my heart and his little smile set the
tone for the entire rest of our interview and he even would steal the show as
he managed his first real steps several times throughout the course of the next
hour-and-a-half.
As I sat down with Adriana, I was immediately struck by her openness and
her voracious desire to get her son the intervention that he needed to thrive
in this world. Jordan is a strikingly
beautiful boy and as I looked at his massive dark brown eyes surrounded by
thick black lashes resting over a sweet smile that seemed to radiate through the
entire interview and I just thought, “This child is beautiful.” It wasn’t just his physical beauty, but this
special little light that seemed to shine through and make me smile with him as
if I might be part of his little world.
My presence was a disruption and he struggled and was obviously stressed
by me being there. New people and
interruptions in the life of an autistic child can be traumatic and the
seemingly ‘bad’ behavior is really his way of trying to cope and understand his
environment.
This was the first interview that I have done where both parents were
present and I watched Juan’s face as he listened intently to the questions that
I asked and the answers that his wife was sharing with me and I knew at once
that I could see a tenderness and desire to provide for his family written all
over his face…and there was something else as well. It was guilt; guilt that he could not help as
much as he would want to due to the requirements of his job; conversely Adriana
showed similar emotions as she struggled with the rigors of trying to raise
their very special boy and desiring that she know when her husband might be
home. I marveled at their willingness to
be open about their mutual dilemma. Like
most autism parents, the Rodriguez’ feel a little detached from the world and
even before they had the autism diagnosis they had been arranging their lives
in a manner that many people who had been living with the knowledge that their
child was autistic for a long time. So
many families face this challenge as it takes more than one parent to go
shopping, help with household duties, and just too master activities of daily
living. Sometimes the idea of a shower
is just something that cannot happen while on one’s own.
We then began talking about their journey with autism and how it had
changed and molded their lives; this was when Adriana shared with me that they
had had no idea previously that their son was on the spectrum; however, she
knew that there was something and she reached out to their pediatrician inquiring
about the concerns that she had. Time
and time again she was ignored, “Our concerns about Jordan not speaking or
communicating at one, two, and three (years) went unheard and we were often
told that kids are different and meet milestones at different ages.” Other issues that occurred at that same office
she realizes now should have been a red flag for his pediatrician, “He was two
years old at the time. When the doctor
came in she tried to look in his ears and he started to get up and kick his
legs…” The female doctor seemed to not recognize that this was atypical
behavior and instead placed the blame on Adriana for not using proper
discipline on her child. Unfortunately,
medical doctors can be just as uneducated about autism as the common lay person
and sadly her reaction to blame Adriana is one that is often made in error by
many people. It is a hope that more
pediatricians and general care providers are educated to watch for signs and
listen to parents when they have concerns.
It was not until they moved to the current town they live in that an even
harsher reality came to light.
Apparently the lack of concern over her son’s speech and behavior weren’t
the only items of neglect that occurred; it would appear that no notations had
been made in Jordan’s files about his progress or development of any kind. It was also at this new office that the word
autism and her child were placed within the same sentence for the very first
time. The moment is one that she
remembered well as she sat in her car and puzzled and fretted over the enormity
of it all. One little word that she had scarcely heard of was now changing the
format of their lives and the direction that they were traveling. She grieved for just that time in the car
committing to herself and her child that this would the only time that she
allowed herself time to feel like this as she immediately knew that from this
point on that she would do whatever it took to help Jordan.
That night she went through the various websites educating herself about
autism; the signs were all there and she began to become angry with herself for
not seeing it sooner. Yet how could
she? She did not even know what it was
and the physicians that she had trusted had not heeded her concerns; they had failed her son. However, as with every good mother who loves
her child, she could not help but feel responsible for not seeing what she
believed was plainly there. There was no
way she could have seen the signs; she just did not have enough information or
enough support from the medical professionals that should have been there for
her.
The journey is just beginning for this family and they work together to try
to make it all work out together. Earlier
I mentioned that I had seen Juan’s expression and being who I am I went
straight and asked him pointedly, “Do you feel guilty about not being able to
be here for Adriana?” I respect what he
said next, “I do, but I cannot always guarantee when I can be home because the
nature of my job. I have to provide for
my family.” The sound of his voice as
his words spoke was that of a man that was proud of his job, that he had
tremendous love for his wife and sons, and was a man torn between making sure
they had the money that they needed to survive and still managing to assist in
the care of his son. They struggle as a
couple and he conceded that their relationship had changed, but that he would
work to make his family work, “I will do anything for my son to help him.”
Autism has all sorts of challenges and some of those challenges for them have come from living within a combined house; Juan's little brother Hugo lives in the home with them and although they love him it has been difficult to teach him to understand his nephew's specific needs. In the same respect, they have to help Jordan understand the dynamic of having an extra sibling in the home. The nature of their closeness in ages and their interactions have likely helped Jordan, but it still adds to the already overwhelming situation that Adriana often has had on her own. And then there is little Julian his
big smiles and sweet face is a special addition to their home
and Adriana is happy watching him grow; his presence has allowed to really see just how different Jordan was even from infancy. Even with such a full house, she acknowledges that she is hesitant to accept help or ask for it from other family and friends. The truth is that most autism parents already know the routine, they know what 'new' brings into their lives, and often they would prefer to just handle and care for their special child on their own. Some might see it as pride,however anyone who knows what it is like to parent a child on the spectrum, we know it is almost self-preservation. Parents often feel more in control of their lives and in some ways, as has been described often by others they find themselves living as they are autistic. It is all about controlling their environment and creating safe and less stressful moments for their children.
As I sat and listened to them talking about their feelings and
their story I was extremely impressed by Juan's and Adriana's mutual commitment for their son;
I felt that they were on the same page and that they would persevere through
the storm. Both are very pleased with
where their child had come from since the beginning of the school year. He went to being nearly nonverbal to
expressing himself in sentences. Although the program he is in has helped him
tremendously, both are aware and understand that this may not always be the
case. Unfortunately, the town that they
reside in is not known for its excellence in special education passed grade
school. I hope that as time moves
forward that they will not have the struggles that some have had to face along
the way. I think I will be stopping by from time-to-time to check on this family and see how they are all doing as time goes on. I am proud to have the opportunity to get to know them and see just how much love that there is in their home.
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| (From top left and clockwise: Juan, Adriana, Julian (9mos), Hugo (10) and Jordan (4 1/2)) |
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