Learning from My Son
Jennifer Lu—San Jose, California, USA
When Josh was diagnosed with high
functioning autism (HFA), my husband and I could not be happier. Of course, we
were not happy that our then five-year-old son had a disability, but we were
glad that there was a name to our son’s inexplicable behavior.
NOT QUITE NORMAL
Josh was born in May 2000. There
was nothing abnormal about his birth, and for the first two years of his life
everything seemed to be great. He met his milestones for sitting and walking.
He babbled words and played with toys, just as any other toddler.
When he was two, we decided to
enroll him in preschool. This was only for two mornings a week and more for fun
since I worked at home and did not really need to have the babysitting. It was
a parent participation preschool, which meant I needed to volunteer once every
two weeks in the classroom. For the first time, I really noticed some
differences in my son’s development versus the children around his age.
I saw that Josh did not care to
play with other children. He was always on his own. I joked that anyone could
spot him on the playground because he would be the one circling the periphery
of the playground, walking around and around, daydreaming about something.
He also did not talk a lot. He
used many singular words like “Mom” or “juice” but was not able to string
together a real sentence. Many times, he would use gestures to get his point
across. However, he seemed to understand all that was asked of him, so I hadn’t
been extremely concerned prior to preschool.
But it became more apparent in the
school’s social setting that something wasn’t quite normal about his social and
language development. I learned later that these are the two biggest
commonalities among children with autism. All individuals diagnosed on the
autism spectrum have delays or disabilities when it comes to social skills such
as ordinary conversation, eye contact, and emotional understanding of others.
We take these things for granted
because they come naturally to us. For people on the spectrum, they are the
hardest things to do because they just don’t possess these skills. As a result,
these issues are likely to lead to impaired social interaction, problems with
verbal and nonverbal communication, and unusual, repetitive, or severely
limited activities and interests.
As I compared Josh to the other
children in his class, I shared my growing concerns with my family and friends.
I remember them comforting me by saying that Josh was a boy, and boys always
developed a bit slower. Even the pediatrician assured me that his son did not
really talk until he was four.
Eager to have an explanation, I
happily accepted everyone’s words of encouragement and left things alone for
the next few months. The only thing I could do in the meantime was continue to
engage him and try to get him to interact more with his peers.
A Difficult Child
It was also during this first
preschool year that another big symptom of HFA came out, although we didn’t
know it at the time. We chalked it up to the fact that we just didn’t
understand Josh and that he was being a difficult child.
One time, on the way home, I
decided to take a different route. As I made a turn onto a street we didn’t
regularly travel, Josh began screaming in the backseat. Although he wasn’t a
talker, he let me know in no uncertain terms that it was not acceptable to go
home this way. He kept insisting that I had to go back to the same spot where I
made the turn and go home the way we normally did.
Since he was a child barely over
two years old, I didn’t understand why it mattered to him that I didn’t go home
the same way. So I replied that we were not going back, and I continued to
drive home. That did not go over well with Josh. His screaming turned into a
full-blown tantrum within seconds. He was thrashing in his seat, and his face
became red from his forceful yelling.
At this point, I was very
irritated with him and thought to myself, “What is wrong with him? Why is he
being so difficult?” By the time we got home, the only thing I could do was put
him in a timeout. I wanted him to understand that what he had done in the car
was not acceptable.
But even during the entire
timeout, he kicked and screamed. I had to physically hold him down. It seemed
like he had hit a road block and could not get past it. It was the most
exhausting timeout we had had, and it was the first in a series of them.
This rigidity and the deep need
for sameness is another huge common characteristic among autistic children.
They dislike changes in their routines and have a hard time transitioning from
one activity to the next.
TOO MUCH TO HANDLE
By the time Josh was three, we
took him to a speech therapist for an evaluation because it was obvious that he
was lagging in language development. We could not take the chance to see if he
would really talk by four.
The therapist diagnosed him with
some speech delays, so Josh qualified to go to the public school-sponsored
preschool, which would work with him for two years on his speech and motor
But by the time he entered
kindergarten, things went from bad to worse. Although his speech had improved,
he could not function well in the class with twenty children and one teacher.
There were just so many rules for him to follow and too many transitions in a
day. Many times, he decided that his way was the best way.
For example, he did not like it
when the teacher turned off the lights. He would go to the light switch, turn
the lights back on, and then turn them off himself. He had to be the one to do
it—always. And it didn’t just happen casually, as if he would walk over to the
switch and repeat the motion. It was almost always accompanied by a big
Eventually, he had a one-on-one
aide to help him transition throughout the day. There were times when he got so
frustrated that he kicked his friends and ran out of class because he could not
handle all the stimuli.
By then, we had already made an
appointment to have him evaluated by doctors at the Autism Spectrum Disorder
Clinic at Kaiser Permanente. Although not much was known about autism then, my
husband and I did read up enough to see that Josh could very well be on the
spectrum. His language delays, lack of social skills, and inability to accept
changes were just too obvious.
Once Josh was diagnosed, we began
our journey into the world of autism. We read every book on the market and
tried all sorts of diets and therapies. He has been to speech therapy and
occupational therapy, as well as group therapy to help him learn social skills.
There have been some really bad
and intense moments in our lives, like the time he got so frustrated with
himself that he took the computer chair (the closest thing to him that he could
grab) and tried to ram his younger sister and grandmother down. They took cover
in another room.
Those were the moments when I went
into my room and cried to God for a long time. I reasoned that I was an
educated person and knew a lot about this disability, yet I was unable to
really help my son when it mattered most.
When the day to day realities of
HFA hit, they consumed my entire being, and I just wanted to crawl into a hole
and give up. But those were also the times when I realized that this was
something I could not fight on my own. No matter how educated my husband and I
were on the subject, no matter how in tune we were with the latest therapies,
we needed God.
And God has been there for us.
By praying to Him each day, it has
brought sanity back into our world. Although there have been many moments that
have overwhelmed us, God has given us the strength to get through the day. Even
though the speech, occupational, and social group therapies have helped Josh
come a long way, nothing has helped us more throughout these years than the
peace we have received through our daily prayers.
We have no idea, though we are
trying to understand, why Josh has this disability. Some scientists think it
has to do with genetics, while others think it is caused by the environment or
a combination of both. I often think back to the days I was pregnant and try to
remember what I had done that might have even remotely contributed to his
But at the end of the day, we know
that God has His plans for us. We may not like them or understand them.
However, God will never give us more than we can bear.
SHOWERED WITH ABUNDANT LOVE
Although it has been difficult,
God has shown us His love in many ways as a result of Josh’s disability. Josh
practically grew up in San Jose Church. We moved to California when he was just
four months old, and this has been a great blessing for us.
The members here have seen him
grow and mature over the years. Almost all of them know he has this condition
and have been eager to help him. Next to God and our immediate family, this has
been the biggest support system for him and for us.
Every week he goes to church and
does something unexpected. Instead of giving him a funny look (as many
strangers do), the brothers and sisters show him understanding and love. They
demonstrate patience, kindness, and generosity. In fact, many go out of their
way to engage him in conversation.
This is what Jesus was talking
about when He shared the importance of the church as a family. We feel it every
week as we have fellowship with the members in San Jose. Even though Josh may
not realize it now, he has been showered with abundant love from God.
Josh is eight now, and he is
steadily improving. He is currently mainstreamed, which means he goes to a
regular class without an aide. He still has his moments, and some things
continue to be very frustrating for him. But with the guidance of the Spirit,
we have learned so much from him.
We have learned to allow him to be
who he needs to be instead of forcing him to conform to our norms. We have
learned to be patient and tolerant. We have also learned to trust in God for
all we need. He will truly give us the strength to overcome all obstacles.
Perhaps this is the biggest lesson God wants our family to learn.