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Special Kids: Dealing With Your
Child’s Disabilities
by Loriann Hoff Oberlin
After much anticipation, the birth of a child brings joy
unmatched by most other experiences. For parents who learn
that their little miracle may face a more daunting
development that joy becomes mixed with unexpected emotions.
When my first son arrived six weeks early, I was thrilled
that he never saw a day of the neonatal intensive care unit
(NICU). Five years later, when Alex arrived three months
premature as a result of pre-eclampsia (again) and an
emergency cesarean section, I was beside myself with fear.
Fortunately, he grew stronger with eight weeks of NICU care,
coming home with bronchopulmonary dysplasia that later
turned into asthma, and developmental delays that weren’t
diagnosed as mild cerebral palsy until he was seven. The
asthma vanished between ages eight and ten (as doctors
predicted it might), but gross motor, fine motor, and
neurological symptoms that contribute to some learning
disabilities linger.
Like other parents, I understand the uncertainty that comes
with raising a special-needs child, how home visits and
intervention is helpful but at the same time feels
intrusive, and how your schedule must fit in countless
medical appointments as well as prescribed activities. Much
of this occurred during my six years as a single mother. I
used to feel a certain tension myself when my son’s
breathing seemed off, but we camped out in the ER (always at
night) with activity books, crayons, snacks for my oldest, a
thermos of hot tea, and stuffed animals. All told, we’ve
been pretty fortunate. You can never quite anticipate new
needs and what they will require of you, but you learn as
you go, summon strength and support, and like Fred Rogers
once told me in an interview, most parents do the very best
job they can.
Adjusting to a New Normal
“It can be very lonely when you have a child with
disabilities,” says Nancy, the mother of “miracle daughters”
who lives outside Washington, D.C. Her oldest was born after
a seven-year struggle with infertility, her youngest adopted
from Mainland China. Even as a former special education
teacher with many resources at her disposal, Nancy admits
that it took three years to figure out what was going on
with her youngest who has severe posttraumatic stress
disorder and reactive attachment disorder. “We’re
concentrating on just getting through one night’s sleep
without having our daughter awake in a state of anxiety,”
she says. “No one really knows when this began, but we
believe we’re seeing a direct result of early trauma in
infancy coupled with the constant pain of acid reflux and
multiple caregivers.”
Delayed Diagnoses
Ann, of Fairfax Station, Virginia, says that the only
problems daughter Katie had at birth was Strabismus (crossed
eyes) and a heart murmur. But immediately after her first
immunization against measles, mumps and rubella at four
months, Katie began having developmental problems. “We
finally got her evaluated at the Kennedy Krieger Institute
in Baltimore, and that was pretty much the definitive
diagnosis of autism,” Ann says. Katie was 3 1/2 years old.
Ann calls the preservative Thimerisol (mercury) used in that
shot the “possible culprit” of Katie’s autism. Many parents
who don’t know exactly what caused their child’s disability
are often anxious to understand more, given literature, and
sent on their way. Too often the answers don’t easily
appear.
In Pittsburgh, Joey, now 15, was also diagnosed with autism
right around his third birthday. His mother Eileen helps to
raise money for autism research and frequently tells of her
family’s struggle. Joey didn’t start to talk until he was
four and as a teenager he uses roughly 100 words. He can’t
carry on a conversation (intellectually he’s two), and
understands only simple things. While he likes adults, Joey
can’t relate to other children. Their biggest challenge:
Watching Joey’s out-of-control, manic behaviors where he’ll
obsessively run and slam himself into a wall over and over,
jump on and off furniture or kitchen counters….or worse yet,
onto your lap while you’re driving the car. Joey would bolt
out of doors or windows or laugh hysterically setting
everyone on edge. His mom says it was hard having strangers
yell at you because he’s grabbed a drink from their table at
McDonald’s. Feeling like they were losing a war, they made
the heartbreaking decision to find residential placement for
Joey when he was 8 1/2, for they could no longer cope with
the overwhelming stress.
The Effect on the Family
“I feel like I lost a lot of my 30s to autism,” says Eileen.
“In some ways though, I was very fortunate…our marriage was
never hurt by this.” She credits the closeness she and her
husband have as pulling them through. “We never blamed each
other, but just accepted that these things happen and that
it was no one’s fault.” Still, she admits that they each
internalized the diagnosis differently. Eileen plunged
herself into trying to “cure” Joey pursuing everything that
might work, including speech and occupational therapy,
special schools, applied behavioral therapy, but when
substantial progress remained elusive, it forced her to
accept the situation much earlier than she may have without
all the interventions. Her husband gave up hope, early on,
remained fairly crushed by the news, then moved on with
life, but more through distance from the situation than
dealing with it. Realizing that her husband also loves their
son, Eileen admits, “He doesn’t really know how to hang out
with him, how to interact, and doesn’t seem to want to spend
the time to figure out what to do.”
Larry B. Silver, M.D. has a practice in Rockville, Maryland
and counsels many families. He’s written about the grief
process many parents go through when they hear of learning
disabilities in The Misunderstood Child, but like any
lifetime disability, nothing truly describes the impact of
such news. Parents do react differently. “Often the working
parent (father) may have guilt, and so he escapes through
work, longer hours, business trips because if denial is
working well, you’re not aware you’re doing it,” Silver
says. Being at home is too painful for some, who may feel
the best they can do is to have a successful career with the
needed income and benefits.
Bob Field, Ph.D. in San Ramon, California has worked with
hundreds of families also learning to cope. “How individuals
deal with the loss can be characterized by the traditional
stages of denial, anger, depression/self-abuse, and
acceptance,” Field says. “As adults who are hopefully
prioritizing their children's needs ahead of their own,
parents often become too invested in the child for their own
ego fulfillment. I have seen many more mothers experiencing
great loss when realizing their child's disability.” He says
some women assume that during prenatal development,
something must have happened.
Field raises an important point that there is no magical
fix, and that unfortunately many target parents with claims
for procedures like brain scans, biofeedback, and exercise
and diet products for which there is little support among
traditional professionals. They prey on desperate parents
who hope that their child can be completely normal, and this
blinds their objective judgment, he says, as they spend
thousands of dollars and much energy unnecessarily trying
things that only delay what is necessary — consistent
support and assistance.
What Helps – What Doesn’t
“I truly feel that lack of support has a major impact on a
family dealing with a special needs child,” says Patty in
Pennsylvania, whose family made life more stressful dealing
with a daughter having cerebral palsy and other
developmental delays. When others, often out of ignorance,
suggest potential causes of a disability or how it might
have been prevented, this only intensifies feelings of guilt
and leaves overwhelming despair.
Often people shy away from supporting a family because they
don’t know what to say or do. “People do less and less as
the years go by,” says Eileen. She wishes other parents
would extend extra sensitivity instead of reciting a long
list of their child’s accomplishments. Other kinds acts:
Simply validating “this must be difficult,” asking “how can
I help,” or providing tangible support such as an occasional
home-cooked meal, play dates or transportation for siblings
(often overlooked) means more than you can understand.
“The doctor told me to make Jimmy as comfortable as possible
for he’d probably be no more than a vegetable,” says
Darlene, whose son was born with cerebral palsy and a
seizure disorder. “This was the last thing said to me before
we took him home.” It was an extremely difficult time that
brought about a marital separation, but somehow she and
Jimmy, now 15, have grown from it. Parent support groups
reduce the isolation, provide answers to questions that may
have stumped or confused the family, and foster friendships
not only for the parents involved but also for the children.
“Jimmy is the happiest child you will ever meet — a sweet
blessing.” Darlene reports that he’s not a “vegetable” at
all, that he sees, hears, and while he has his share of
health problems they’ve gotten easier, too. “Jimmy has made
me a better person. The most important thing I can do as his
mother is to simply love him and appreciate the things he
can do and not dwell on the things that he cannot.”
— 30 —
Loriann Hoff Oberlin is a Maryland-based freelance writer.
She’s the author of Surviving Separation & Divorce, Writing
for Quick Cash as well as The Angry Child and Overcoming
Passive Aggression, co-written with Dr. Tim Murphy. Reach
her through her website
www.loriannoberlin.com.
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