question of when to let go of our children—how much and how quickly— is extremely
challenging. This seems especially true
if you have special needs kids, and it becomes even more complicated when you
have twins. All things being equal, most
people would probably allow two children the same age to have similar
responsibilities and freedom. But things
are NOT equal with Max and Sarah, nor, I suspect, will they ever be “equal,” in
the sense most people understand that slippery word when applied to humans.
spite of the fact that my twins are chronologically “equal” in age, Max has
always been far ahead of Sarah in terms of social, academic and emotional
development. Although Max has ADHD, his
faster-than-average verbal development helped us to see early on that Sarah was
lagging far behind. Thanks to this contrast with her twin brother, Henry and I got
Sarah tested at 12 months old, and as a result, she was diagnosed on the
autistic spectrum unusually early for babies born 23 years ago.
began travelling alone to school and to his friends’ homes at age 11. Sarah went to a special school on a yellow
bus that picked her up and dropped her off right in front of our apartment building
all the way through high school. Sarah
didn’t even HAVE any real friends till high school. Henry
and I finally (nervously) allowed our daughter the freedom to walk and take the
bus to her friends’ apartments at age 13 or 14.
During her childhood, Sarah was often insanely jealous of her brother:
“Why can’t I go to a friend’s house like Max?
When can I have sleep overs?” Answering her was heartbreaking.
Growing older, she asked: “How come Max can
take the subway and I can’t?” Here we
relied on the sexist answer. “He’s a
young man and he’s much bigger and stronger than you. No one will mess with him, but you’re a
pretty young girl….”
The truth was much more
complicated. I worried Sarah might push
the wrong person in order to get onto a crowded train, or perhaps take a seat from an
elderly person who needed it. Or maybe
some crazy person would engage her, realize her vulnerability, grab her purse,
or God forbid, throw her onto the tracks…. At 16, Henry and I finally allowed
her to travel on subways with older male friends. At last, at age 19, when she transferred to
Pace University, Sarah began taking the subway everywhere on her own. She was so thrilled with this overdue freedom
that she preferred to carry a heavy suitcase on the train, instead of letting us drive her to her dorm after vacation or when the weather was bitter cold.
Max graduated from college in 4
years with the class of ’13. He sort of
lives with us, and sort of doesn’t. By
that I mean, he spends most nights at his girlfriend’s house in Brooklyn
(except for 1 or 2 nights when she’s here).
He also spends time at a friend’s house in Los Angeles, looking for
work. Floating in and out of our
apartment, Max showers, changes his clothes, does his laundry and devours enough
pretzels, cheese and Coke Zero to feed a battalion. In the last year or so, I have insisted that
Max refill his own prescriptions, set his own alarm and carry his own key (with limited success).
What I still haven’t done is
totally let go. I still make my 23 year
old son’s appointments with the dentist, cardiologist and internist. I’m afraid he’ll forget and neglect these
routine but necessary visits. In the case of the cardiologist, it’s crucial
to monitor Max's heart every six months, because he had open heart surgery to
repair his mitral valve at age 3. There’s
been some leakage over the years and if it worsens any further, he will need
another surgery—a fact that’s he’s too frightened to focus on (understandably). But when it comes to minor health complaints
(real and imagined), Max calls the dermatologist, orthopedist and urologist and
makes his own appointments. I know he’s
worried and therefore motivated to make the call and stay on hold.
Sarah expects to graduate from
college this May after 5 long years, including summers. More than once my daughter has asked: “Why
did Max graduate in 4 years and I’m doing it in 5 years?”
“You had to do some remedial at
work at Landmark, and then you lost a few credits when you transferred.” I explain. “Max started college with advanced
placement credits; he didn’t transfer and his school had fewer core
requirements than Pace.” The truth is
that it’s a miracle Sarah made it to college at all. Not only will Sarah
graduate, she has just been invited to join an honor society for students with
a GPA of 3.5 or higher. Henry and I
couldn’t be more proud and keep telling her that whenever she worries about Max
being “ahead” of her.
Living at home and commuting to
school, Sarah isn’t home much either.
Like Max, my daughter can sleep
at her boyfriend’s house or stay out till 3 AM with friends at a late movie, as
long as she texts me in advance. Of
course, I still worry about her more than I worry about my son. Sarah has accomplished an incredible amount
in her 23 years, yet she is vulnerable, still lacking in many simple life
skills. For example, she’s afraid to
turn on the oven! I know she’ll learn
because she wants so badly to be independent, but even so….
As for doctor appointments, I make
all of them for Sarah. She is not
comfortable dealing with menu options and talking to the receptionist herself. However, Sarah does refill (and always
remembers to take) all of her medications without any help or reminders from
me. In this one area, she is actually
ahead of her brother. Like Max, Sarah goes to all of her doctors on her own
(except for the first visit where I fill out the paperwork and introduce
I’m trying hard to believe what the
late Dr. Stanley Greenspan (a leading child psychiatrist) once said: “Does it
matter if your child learns to write script at age 9 or at age 11? Once she learns it, no one will care when she
mastered it.” (Nowadays it probably doesn’t matter if your child EVER learns
script, since nearly every written communication is typed). But his point was that life isn’t a
race. If Sarah learns more slowly and
takes longer to become independent, so what?
Raising a child on the autistic spectrum is a marathon, not a
sprint. To a lesser extent, the same is
true for a child with ADHD. It just
takes longer for special needs kids to grow up, and parents have to be patient
and work harder. Easier said than done!
The media would have us believe
that many parents of 20-somethings are “helicopter parents,” who have hovered
and overprotected our kids to their detriment.
How many of those journalists have special needs kids? On Google I found one article for 18 year
olds and college-bound kids to guide them in making independent health care decisions. Of course, the article notes, confidentiality
is tricky if the young adult is covered by the parents’ insurance, which these
days can be up till age 26.
Perhaps the most depressing article
discussed the disturbing fact that 36% of Americans 18 to 31 years old are still
living with their parents. That's the
highest level ever recorded! According to Time
Magazine, that statistic means approximately 25 million U.S. adults are
still in the nest with Mom and Dad. So
what’s causing more Americans than ever before to live in a state of “perpetual
It seems financial independence has
become increasingly difficult to achieve for a whole host of reasons: an
all-time record of $1.08 trillion in student debt, an 11.5% delinquency rate on
these student loans, and the fact that our young people are struggling to find employment. In 2013, only 43% of those in the 18-29
year-old age bracket had a full-time job.
Even if a young adult is able to find a job, that doesn’t mean he/she
will earn enough to survive independently.
The quality of jobs in our country continues to worsen and so do wages.
No wonder so many young people
remain in the family nest. Letting go seems to be a long, drawn out affair, no
matter how much parents and kids yearn for the day that we can all live truly
Labels: ADHD, autistic spectrum, college graduates, Dr. Stanley Greenspan, health care, heart defects, helicopter parents, special needs, twins, unemployment, young adults with disabilities