A Tale of Two Sons
I have raised two sons with autism.
They wear the same size shoe, but that's where the similarity ends.
While pregnant, I did everything I could to assure there wouldn't be
any problems with the boys. I saw the doctor regularly, ate well,
didn't smoke, and consumed no caffeine or alcohol. I also made the
decision to have my children by natural childbirth, not wishing to
expose them to anesthetics. When you make plans, God laughs.
When my older son JJ was born, he had
the cord around his neck, a low Apgar, a white blaze in his hair, and
rarely stopped crying. He rapidly developed a skin rash as well and
gained almost no weight. As it turned out, he was allergic to the
cream we had been given in the hospital. As a precaution, his doctor
declared that he could have only breast milk, wear only cotton cloth
diapers and cotton clothes, and that his clothes be washed only in
Ivory Snow. Under that regimen his weight gain rose to normal levels,
but he still cried often and didn't sleep through the night for nine
months, about the same time he transitioned from breast milk to soy
milk. We took him straight to cup, which after an agonized outburst I
will never forget, he seemed to accept well.
When JJ was less than a year old, my
husband was offered what he felt was a better job in California. I
was uncomfortable with the idea of moving. We had only lived in Saint
Paul for two years, but I had made friends there and a friend I
already had from college lived there too and was a willing babysitter.
JJ's pediatrician was in St. Paul as well and he had been both
available and extremely diligent. Still, my husband's parents lived
in California, so we would be gaining proximity to grandparents. It
seemed like a reasonable trade. JJ did remarkably well on the cross
country trip, and seemed to have made a developmental leap. Other
than complaining loudly in the morning if he wasn't immediately fed
rice cereal and soy formula, he was such a happy baby, so much so
that people at the hotel where we were housed for our first month
remarked on in it. To everyone's further amusement, he had begun to
crawl very rapidly, scooting down corridors at warp speed.
Other than picking up colds and
respiratory infections we had never seen in St. Paul, and crying his
heart out in the church nursery, JJ seemed to be doing well in
California. When he was eighteen months old, I went back to work at
night, leaving him in the care of a fellow choir member from church
during the hours I slept. A week before he was two, he surprised us
all by beginning to read spontaneously. His first word was gleaned
from a commercial, “Wards.” The second was like it, “Sears.”
All the brands of cars soon followed.
We really thought we had a genius on
our hands, but he was confounding. He was a relatively late walker,
and when I started him at the local daycare at age two, had trouble
adjusting. He was also very difficult to potty train and was limited
in his interactions with other children. In some ways he was Jekyll
and Hyde. He had a sunny smile both adults and other children loved,
but could also become extremely angry and even bit other children.
His fine motor skills were excellent, his writing and drawing way
ahead of other children his age, but his gross motor skills poor. He
could barely manage age appropriate play equipment. JJ entered an
advanced kindergarten at a magnet school because of his advanced
reading skills, but the school nurse saw soft neurological signs. A
visit to a neurologist produced a diagnosis of minimal brain
dysfunction, but the doctor involved told us he really thought JJ was
fine and was using the diagnosis to get insurance to pay. JJ was
still having so much trouble relating to the other children, we
decided, even though we could scarcely afford it, to send him to
private school.
When JJ was four, his younger brother
DC was born. His birth, again without anesthesia, seemed flawless.
His Apgar was high and his early developmental milestones, including
walking, were for the most part ahead of schedule. I thought that the
second time around, I had the easy one. Then things began to change.
At ten months, he weaned himself, pushing the breast away. I was
disappointed, as I had been hanging out with some women with the La
Leche League and would have been more than happy to continue. As he
approached age two, I watched with dismay as he lost words he had
acquired early, until he was finally mute. His skills regressed from
ahead of normal, back to the level of three months. At first we
thought he had lost his hearing, but that proved not to be the case.
Finally at age two and a half he was diagnosed with autism. At the
same time, his brother went from a bogus diagnosis for minimal brain
dysfunction, to a real one, for autism in the residual state.
DC, diagnosed young, had interventions
of all kind, practically from the start. We went together to UCLA,
where we had a course from a therapist following the teachings of
Ivar Lovaas, the basis for ABA. He had speech therapy. He had another
therapist, in our home, trained by Lovaas himself. He was in special
eduction from the outset and stayed there throughout his school
career to age twenty-two.
After two years in a private school, JJ
went back to public school. At various stages he was in regular,
gifted, and learning disabled classes. He had speech therapy, which
was less than successful, something that was blamed on him by his therapists. He had
social skills training which had more impact. The most useful things
he had were a cub scout troop with normal kids and youth group at the
church. Both were great socializing experiences. In High School he
was the only child they'd ever had who was both working under an IEP
and up for valedictorian.
Fast forward. JJ, my older son, the one
who was born with obvious problems, now is almost forty and has two
bachelors degrees, a masters, and a PhD. He works in a government
laboratory in another state, lives fine on his own, and comes home for
Christmas. In many way's JJ was the jumping off point for my novel,
Dark Awakening.
DC, who at first seemed the golden
child, lives in a house not far from us, with one roommate and
twenty-four hour staff. He's thirty-five. The only paying job he has ever
had, he was only able to hold for about three weeks. He is brilliant
with computers, but his behaviors keep him from capitalizing on that
skill. He reads and writes well, but his spoken language would be
primitive for a two year old.
What one might take away from this is
that early intervention, even when delivered by experts, promises no
happy ending. Another conclusion might be that all is not lost
without it. Both are possibly true, but a better thought is that
persons with autism, even in the same family, can have very different
courses and very different outcomes. The happiest one is that even the
most difficult baby can turn out pretty well.
