Mommy,
make it whole again!!"
I stared,
dismayed, at the broken cracker on the floor. Seven pieces, at least.
"Jesse, I can give you another
cracker, a new cracker, and that one will be whole."
My two
year old began to scream. "No Mommy I want that
cracker to be whole I want that one to be
not broken Mommy please you can do it please do it now!"
As
he wailed, I sat down next to him on the kitchen floor, and started
to pick up the broken cracker. Tears trickled slowly down my cheeks.
It was
not the first time I realized I couldn't fix everything for my eldest
son, nor would it be the last. But this moment crystallized the
dynamic between us: his innate need to create perfection in the
world around him, my inability to meet his standards, and the crushing,
overwhelming guilt I have always felt when, no matter how unrealistic
the demand, I knew I had disappointed my son.
Jesse
has ADHD, Attention Deficit Hyperactivity Disorder, which went undiagnosed
until fourth grade. From the moment he spoke, he exhibited many
classic symptoms. As new parents, we couldn't identify them. In
hindsight, his childhood resembles a series of debilitating events,
one moment after another that shattered his belief in the "Mom can
make it all better" theory, the theory which emerged as one of the
few comfort-foods in the self-imposed diet of his early years. Yes,
the theory is ridiculous. It is our job as parents with an appropriate
sense of the world and its limitations to ease our child's journey
from fantasy and parent idolizing to reality. But for Jesse and
for us, this journey was a field of land mines, fraught with unseen
dangers and fears for which no description of parenthood prepared
us.
By the
time Jesse was 2 and a half, I began to ask basic questions of our pediatrician.
"Jesse is a very active
child. None of his friends fidget like him. He responds poorly to
discipline, and I don't know how to make him behave. Suggestions?"
Unconcerned,
the doctor responded, "He's a boy, boys are active. Set firmer limits,
read some books, maybe take a parenting class. He'll be fine."
Firmer
limits. O.K. I bought several books on the subject, which made sense
on paper. I learned about limit setting and time-outs. But the simplest
attempts at discipline resulted in trauma, in tantrums. Each incident
left me shaking and in tears.
"Jesse, you cannot throw cars across
the room. That is one of our rules. You are in time-out. Sit in
this chair for five minutes. I will tell you when your time-out
is over."
"No Mommy I don't
want to sit in that chair I hate that
chair I want to sit in this chair over here so there
and now I sat in the chair and my time out is over and I'm
going back to play!"
"Jesse you are in time-out. Sit
in the chair. Any chair."
"No Mommy my time out is
over and I won't sit in any chair I told you already nnnnnnnnnnnnnnnnnnnnnooooooooooooooooooooooooooooooooooo!!!!!!!!"
No matter
how many times we discussed consequences and time-outs calmly and
in advance, in the heat of the moment, Jesse's temper shot from
0 to 1,000 in two seconds. I tried counting to ten, leaving the
room, writing a journal, hitting the wall. I made no progress; I,
too, was unable to remain calm. On bad days, I called my husband
at work. "You must come home by 6 or I will slit my throat. I can't
handle him any more." Jack always managed to appear on time, bringing
welcome relief. Another parent on location; a fresh dose of patience
for Jesse.
By now,
our second son, Jordan, had arrived. At his six-week check-up, I
told the pediatrician I was desperate with Jesse's situation, and
demanded a specialist. I'm sure I looked terrible; sleep deprived,
weeping, trying to negotiate a newborn and a toddler who, even as
we spoke, was tearing the examining room apart. The doctor took
pity on me and gave me two names.
The consults
yielded different results. The first told us we had a psychotic
monster on our hands. The second said Jesse was perfectly normal,
just very active. Thank you very much.
Play dates
were a nightmare. Jesse interacted well for about an hour, and then,
without warning or provocation, he would meltdown. I'd find myself
running from the kitchen and a cup of coffee with the other mother,
summoned to the playroom by the screams of the host child. Perhaps
a favorite toy broke, something was thrown, or Jesse bared his teeth,
I don't know. But the visit was over, and in an instant, I was dragging
Jesse out the front door kicking and screaming, murmuring excuses
over my shoulder at the mother, collecting the stroller, juice cups,
hat, mittens, boots, coat and toys as we scrambled for the elevator.
We were never invited back. Eventually, Jesse's unpredictability
frightened me, and I stopped setting up time with other kids.
Jesse's
birthday is in early August. We enrolled him in nursery school the
September after he turned three. Hoping a structured environment
would improve his socializing skills, I looked forward to school.
It never occurred to us we could wait a year. Boys, particularly
those with summer birthdays, can be held back; less mature than
girls, they often blossom if among the oldest in the class. This
we learned in hindsight.
Nursery
school was an unmitigated disaster. Jesse refused to separate, play
well, share, make transitions, clean up, listen to the teacher,
or even pee in school. The lovely teacher, new and young, was baffled.
The head of the school allowed me to stay in the classroom, hoping
my presence would facilitate Jesse's adjustment.
So from
September to the end of December, every morning from 9 to 12, Jesse
and I went to nursery school. After the holiday break, he separated
from me, and I started to drop him off. But he was far from well
adjusted. If his favorite classroom toy was unavailable when we
arrived, he threw a fit. At pick-up, if I stopped for even 30 seconds
to talk with the teacher, Jesse wet his pants. He bit another child,
not once but twice, and then, much to my chagrin, bit the teacher.
It was
a long year. In the spring, we looked at several other schools,
and took Jesse to interview at the first one. He sat in the lobby
with his hands in his jacket pockets, and refused to get out of
the chair to talk with the teachers, see the classroom, or leave
us. Luckily, the private school I had attended from 5th
to 12th grade, where I was a Trustee, accepted him for
kindergarten. I'm not sure he even went for a formal interview.
They knew he existed. They knew me. They took him.
Our family
endured constant pressure from parents and in-laws, everyone commenting
about limits and punishments and poor parenting skills. I felt inadequate
at best, usually willing to tear my eyelashes out one by one rather
than face difficult social situations with Jesse. I continued researching,
and discovered a parenting class given by an author whose work I
found particularly insightful. In her support groups, I shared my
anger and frustration with learning techniques that worked perfectly
with Jordan but not with Jesse. The group listened to my stories,
offered suggestions, and brainstormed lists of survival skills.
One exercise
from the parenting workshops stays with me. Each parent wrote a
"Bug and Brag List" for their child, where you noted both the negative
and positive aspects of a specific character trait. For example,
under Bug, I wrote: distracted by everything, too active.
Under Brag, on the same line, I wrote: interested in everything,
active at sports. Carrying this concept with me, I delved for
good news about Jesse's frustrating needs, hoping to find his gifts
on the same line as his problems.
Little
by little, I began to cope. I took careful note of Jesse's sensory
issues, and edited them from his life. Tags bothered him; I cut
them out of his clothes, and washed everything before he wore it.
I bought only soft garments; sweat clothes, no dungarees, nothing
with zippers, collars or buttons. He owned no "good" clothes. Socks
made him frantic; I found some without heels, turned them inside
out so the seams would not irritate him, and rotated the spot worn
over his heels so they would not wear out too quickly. I removed
torn garments immediately. I avoided "let's learn to tie our shoes"
entirely and bought sneakers with Velcro fasteners, one pair at
a time. I shopped for his clothing and shoes on my own, returning
and exchanging as needed, and avoided bringing him to the store
with me. When I found a hat or mittens he liked, I returned to the
store and bought eight more in case of loss. I washed his laundry
every night, so if he wanted to wear exactly the same outfit the
next day, it would be clean.
We were
surviving.
Transitions
were troubling. Getting him into the bath was difficult; getting
him out was impossible. Bedtime prep held its own terrors. Warnings
helped somewhat.
"Jesse, in 5 minutes, we will get
ready for bed."
"Jesse, in two minutes, we will
get ready for bed."
"Jesse, now it's time to get ready
for bed."
"What you never told
me I had to get ready for bed I'm not done playing
yet I don't want to go to bed I'm not
tired I want five more minutes to play go away and come back
in five minutes!"
Next tactic.
"Jesse, look at me. Look me in the face. You have 5 minutes until
bedtime. Do you hear me?"
"Yes."
"Do you understand me?"
"Yes."
Better
results, once or twice. Finally, I had to take his face in my hands,
force him to look at me, force him to stop what he was doing to
hear the instructions. One step forward, three leaps backwards.
A little progress, constant discouragement.
In some
situations, Jesse lost concentration entirely, distracted by the
multitude of stimuli in his environment, no detail too small for
his mind to wonder about. I discovered a positive spin on this,
and took him with me on long car trips. His constant chatter from
the back seat made falling asleep at the wheel impossible; I reveled
in the workings of his alert brain.
"Mom look at that blue car over
there did you notice the passenger door isn't completely closed
I wonder if the driver knows about it oh look Mom there goes a police
car how fast do you think he is going and where do you think he
is going do you think it is a robbery can you follow him oh look
Mom there's an Audi just like Dad's car except that Dad's car is
beige Mom look at that license plate did you see the Z in it Mom
let's play the alphabet game I love that OK I'll start Ready Set
Go I see the A on that sign over there and let's see where is the
B oh yes I bet I can get the B really fast Mom look at the logo
on that store we're passing there's the B that's because they sell
bicycles Mom did you hear that they sell bicycles can we stop and
buy a bicycle my bicycle is too old and I need a new helmet anyway
and Mom my helmet will need stickers look there's a Mac Donald's
let's see if they have stickers and I want some French fries too
oh Mom look
"
In addition
to focus issues, Jesse had hyper-focus issues. When he concentrated
on something he loved, he could do it for hours. One of his favorite
activities was playing with his large collection of Matchbook cars.
He arranged them in a huge circle on the floor, in some exacting
order known only to him. Even broken cars remained in the fleet.
I once tried taking out a badly damaged car, carefully adjusting
the vehicles around it to hide the space. Jesse played with the
circle of autos for about two minutes, then said, "Mom where is
the blue car you know the one where the passenger side door is off
and the lights fell out and the paint is mostly scraped off it was
in an accident with the green car in front of it and the police
car is coming to help with the accident but now it's missing and
it's one of my favorite cars do you know where it is?" Luckily,
I had not yet thrown it out. I returned it to him, Jesse's play
resumed, and I never tried to cull cars from his collection again.
Jesse
was shy about drawing. Plain paper and crayons held no allure for him.
One summer when he was about five, he found a piece of lined paper.
He took a pen, sat down, and carefully and laboriously, without
a mark outside the blue lines, drew a continuous design on the top
line of the page from one edge to the other. He paused, reviewed
his work thoughtfully and, pleased with his product, started the
design on the second line. For many years thereafter, he was unable
to create pictures on a blank page until he drew an edge. He found
tremendous comfort in, literally, lines of demarcation, and was
unable to function without such rigid structures.
Kindergarten
and first grade contained their share of challenges. Jesse refused
to bake with the rest of the class because, perhaps, he disliked
the feeling of flour on his hands. Dirt on his hands in the playground
was fine, but flour in the classroom? No way. He refused to rest,
and instead played quietly with small toys to pass the time while
the other children, and usually the exhausted teachers, dropped
like Big Game and slept on their cots. He fidgeted through circle
time, and avoided many of the class activities.
Once first
grade began, letters and numbers interested him, and he enjoyed
the stepped-up learning. But discipline issues continued. His art
teacher came to me in the school lobby, and said, "Julia, I wanted to tell you that
yesterday in class we worked with beeswax, and Jesse made the most
wonderful pine tree!"
"Oh, thank you," I replied gratefully,
"it's such a treat to hear good news about him, and not another
report from a teacher who had to throw him out of class."
"Oh, I threw him out after
he made the pine tree."
His love
of exactness continued, and he learned to tell time. We bought him
a watch, which he wore proudly to school. The teacher confiscated
it the first day. When she said, "Children, we have five minutes
to finish clean-up" Jesse timed her, and when she followed with,
"OK, clean-up should be done by now" he leapt out of his chair,
shouting, "No, no, you're wrong, we have 32 more seconds!"
By May
of first grade, Jesse was not reading. Although most of the children
in his class had already started, his teacher advised us his progress
was still on track. He refused to practice with us, and never sat
down with any of the simple early reader books to read on his own.
Then he came home from school one day, casually picked up one of
his books from the coffee table, and sitting next to me on the sofa,
began to read it out loud, slowly and perfectly.
"Jesse, when did you learn to read?
How did you do this and not tell us? What is this about?"
"Mom I didn't want to show you
my reading until I could do it really well and now I can so I want
to read to you all the time."
Another
lifetime pattern established, clearly understood by him, a mystery
to us. He didn't like to practice things, but he enjoyed succeeding.
We saw this again, later that year, with speech therapy. He'd been
working for two years on a Lateral Lisp with almost no progress,
and one day, he came running out of the therapy office with a big
grin on his face. The therapist followed close behind him.
"He's licked the lisp. It's gone.
Totally." She smiled at me.
"Forever? In the last hour? How
can that be? Jesse, what have you been doing in there all this time?"
"I've just been practicing Mom
and now I got it right."
When I
became pregnant with our third son, we moved to the suburbs, and
signed Jesse up for second grade. I fretted more about his adjustment
to the local public school than the rest of the move. What would
happen if he hated the new environment? We knew no one in our neighborhood,
and had no friends among the teachers or staff of the school. The
week before school began, I took Jesse to visit his new classroom,
and we met his teacher. She was just pre-retirement, and had been
a nun before entering the teaching world.
At pick-up
on the first day of school, I waited anxiously for Jesse. He came
skipping out, found me immediately, and began. "Mom I met everybody
in my class and I know all of their names and they told me which
houses are theirs on our block and I want to take a walk and visit
them now and I can even spell all of their last names and I don't
have any homework so we have lots of time and I see the ice-cream
truck over there that's so great can I get ice cream now let's go
Mom why are you standing there with your mouth open not moving OK
I'll go and get in line for the ice-cream you get your money
"
It was
a new beginning. He loved the change, learning new faces and meeting
people. Unfortunately, not all of the new teachers loved him, including
the former nun. Discipline issues followed him everywhere. Grades
2, 3, and 4 blur together, similar in their indistinguishable and
endless lists of Jesse's infractions against other students, rules,
teachers, and playground mishaps. His best companions were the Principal,
in whose office Jesse spent most of his time, and the school secretary,
whose desk was next to the Principal's office. We came to adore
this Principal, who steered Jesse gently and firmly, and managed,
almost single-handed, to keep him in Elementary School during those
pre-diagnosis years.
Each day,
I turned off the phone from 2:45 until 3:30, dreading the calls
from teachers complaining about Jesse. I lived in fear he would
lose his temper on the street when I wasn't watching. I never had
answers when strange parents called to yell at me about his aggressions
towards their child. I didn't know what to say to friends or grandparents
when they asked questions about his progress at school. Sure, he
was bright. Sure, we could try harder. Sure, maybe another teacher,
another school, another something.
He found
few friends his own age, and was only invited to a couple of homes,
once each, for play dates. If children came to us, the mothers called
every half-hour to check on their kids, and picked them up early.
We survived those years mainly because our neighbors had two children,
a boy older than Jesse, and a girl Jordan's age, and the kids bonded
and played beautifully, mostly in our two homes and back yards.
Their son was also difficult, actually ending up in a brief scuffle
with the law, and I think the parents found Jesse easy by comparison.
Both doctors, they were compassionate, kind adults, and sympathized
with us when nobody else in the neighborhood could.
We found
a local therapist for Jesse, and he saw her weekly. He enjoyed the
sessions of play therapy, and she was supportive of him and pleased
with his progress. We later realized kids like Jesse function best
in a one-to-one situation; individual therapy, although effective
in treating specific disorders, may not necessarily reveal them.
In the
winter of 4th grade, Jesse's teacher asked if he might
have ADHD. We investigated the required testing. The school was
willing to foot the bill, but wasn't in a rush. We found specialists,
paid for everything ourselves, schlepped him around, and got it
done.
The results
were a clear diagnosis of ADHD. Medication was recommended; we decided
to try Ritalin. Results were instantaneous. One weekend of drugs
convinced us that for now, at least, medication was the answer.
I asked
people who are more familiar with ADHD and the medications used
to treat it why stimulants help with this disorder. As I understand
it, the brain of a child who has ADHD is wired slightly differently.
It processes information so fast that the body can't keep up, and
the resulting discord produces the hyperactivity symptoms. Certain
drugs speed up the body, and when body and brain are in sync, the
child functions more smoothly, as a unified human being.
When Jesse
began taking Ritalin, for the first time we saw the child inside
him, the quiet and still child, the child we thought Jesse wanted
to be. I'd run into him in the middle of the day at school sometimes
when he was medicated, and the glassy look in his eyes startled
me. I'd ask, "Jesse, are you feeling OK?" "Sure, Mom. I'm fine.
The day is going well. I'll see you after school." I never got used
to the drugged look. He took his meds and went to therapy, and called
the Ritalin his "good behavior medicine." His behavior in school
improved dramatically, and his concentration skills along with it.
I'll never forget, at the beginning of 5th grade, when
I went in to drop something off at the school office, and the Principal's
secretary said to me, "Oh, it's so quiet around here without Jesse,
I really miss him!"
By the
time he was 13, Jesse developed into a superior athlete. He played
soccer, baseball, basketball, lacrosse, football, tennis, even began
sailing with my father. The adrenaline rush of sports was self-medicating;
he played hard, focused well, and ran fast, contributing fully to
the group effort. At a soccer dinner, his coach called the name
of each player and offered a sentence of praise. He commented that
Jesse was "
the unquestioned star of the team."
When he
began to play Little League, Jesse asked us to buy him a catcher's
mitt. My husband cautioned me. "He just likes to collect things.
He's not serious about catching, it will pass. Just wait. Please
don't buy it for him yet." But I, the Mother who believes if you
buy things for your kids they will be happy and love you more, which
my parenting class called, "The Happiness Trap," took Jesse shopping,
and we bought the mitt.
Jesse
became a brilliant catcher. Our family joked that all Jesse needed
was a small country to run. In baseball, he found the perfect world,
and as catcher, he was in charge of it. His position was at the
center of all the excitement on the field. Stimuli surrounded him.
The umpire stood behind him yelling about something; the batter
strutted in front of him, getting ready, swinging; on the mound
was the pitcher, constantly checking out the bases; and the ball,
the ball was in the air flying towards him. He knew exactly what
to do: stay alert, give signs to the pitcher, catch the ball. He
created a tunnel of focus for himself amidst the frantic noise and
energy of the game. He loved it.
Catching
for a baseball team incorporates all the ingredients an ADHD kid
needs in a recipe for success: action, noise, rules, multi-tasking.
It is a job designed for a relentless, tireless human being. Instinctively,
Jesse figured this out for himself. His coping skills finally triumphed.
I found
myself suddenly humbled by his abilities. We worked so hard to understand
him, find ways to guide him, anguished over each project, each grade,
each report. Ultimately, Jesse needed to figure out his ADHD world
for himself. As parents, we might smooth the road somewhat, but
the journey to success, and even the path itself, had to be paved
by him alone. His journey was not about taming his ADHD, but about
inventing ways to see his issues as gifts, and discovering how these
gifts enriched his life. We could offer Jesse medication, therapy,
and support, but as an adult, he alone could determine what part
each of these aids played in his life.
I wonder
sometimes if we could possibly be the best role models for Jesse.
Are we fit to give this human being the best shot at a productive,
happy life? I see, in myself, so many of my own parents' traits
and habits, and cannot live with my inability to outgrow them, exorcise
them from my personality, or at the very least, transform them into
positive instincts. And now I see these traits in Jesse, those knee-jerk
reactions, transferred from one generation to the next, and watch
helplessly as he struggles to cope with disappointments I have not
yet mastered, dealing with feelings and failures in words I cannot
begin to utter to myself. I watch him, and I love him, as I have
loved my parents; I ache for the things I cannot fix for him, wishing
to take the hurts upon myself. Perhaps this is why I am the right
mother for him, because I have learned that my journey is to see
his gifts, and to give him, along with my weaknesses, all of my
strengths.
Now 16
years old, Jesse stands 6 feet tall. His dark, curly hair, worn
in a buzz cut, complements his light blue eyes, which twinkle with
humor just like his Dad's. His cheekbones, his perfect teeth, and
of course, his temper, are from me. He has an athlete's body, and
wears clothes to show it off. When he meets strangers, he looks
them in the eye, gives a firm handshake, smiles warmly.
People
compliment me, "Oh, he's so handsome, what a great kid, you are
so lucky."
"Yeah," I reply, glancing proudly,
and knowingly, at my hulking teenager. He winks at me; I wink back.
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