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Family Stories
Meet My Child, Please
Our son Benjamin was born in October of 1996 after a
normal, full-term pregnancy and routine delivery. He was sent home from the
hospital 24 hours later pink, healthy and beautiful. One week later we left
“normal” behind us in the dust.
 At
one week of age, during a visit to test for jaundice, our physician heard
Ben’s heart murmur for the first time. We saw a pediatric cardiologist the
next morning. Ben was diagnosed with a couple of “minor” heart defects that
may or may not need further intervention in the future. Because infant’s
hearts grow and change so rapidly he was scheduled for a 6-week follow-up
appointment, at which time several more heart defects were detected. Ben
was diagnosed with a small VSD (hole in the lower chambers of the heart),
Super-Valvular Aortic Stenosis, Coarctation of the Aorta, and Pulmonary
Stenosis. All of the vessels around his heart and throughout his entire
body were too small and irregularly formed. This caused his blood pressure
to be dangerously high from the waist up and too low from the waist down.
Surgery would be required.
While at Mayo, we were also sent to a pediatric geneticist. Usually, but
not always, when more than one or two heart defects present themselves,
there is an underlying genetic defect causing it. At the age of two months,
Ben was diagnosed with Williams’s Syndrome. It is a chromosomal abnormality
in which part of the 7th chromosome including the elastin gene gets deleted
at conception. It occurs randomly in approximately 1 out of every 20,000
live births. There can be heart defects, kidney defects, mental retardation
and developmental delays ranging from mildly delayed to significantly
impaired, failure to thrive in infancy and early childhood, and obesity in
adulthood among other things. The children tend to be very social. Life
expectancy is about 40 years. Most will always live at home or in a group
situation. We were not to be this “lucky.”
Benjamin had open-heart surgery at the age of 2 months. He lived through
surgery but the following day he suffered cardiac and respiratory arrest and
a stroke (brain bleed) from the resuscitation efforts. At that time, the
bleed encompassed one-third of the left side of the brain with a small clot
on the right side. One year later the bleed had expanded to encompass the
entire brain, leaving Ben to function at “brainstem” level.
There are numerous medical terms for everything that went wrong, but the one
you will probably recognize is severe Cerebral Palsy. From that moment on,
Ben was confined to a wheel chair, bed or our arms. He was fed through a
tube in his stomach. He had seizures every day. He was non-verbal. He had
more appointments with various medical specialists than an average
80-year-old in a nursing home.
Benjamin was not the poster child for William’s Syndrome. His heart defects
were more severe than most. His stroke put him in an entirely different
category all together. We know very little about living with someone with
William’s Syndrome. We know a great deal about caring for a child with
severe brain damage. We know a great deal about redefining “normal” and
surviving and grieving.
Benjamin died February 2001 at the age of four years. Our lives now are
divided up into smaller, more manageable fragments and defined as before Ben
was born, after Ben was born, before Ben died, and after Ben died.
As individuals and a family, we learned a great deal about living, loving,
surviving, giving, what to value, and what to let go of. That was Ben’s
most precious gift to us. Our gift to Ben was to do the best with what we
were given, to give back as much as we can, and to honor the memory of his
life.
Many people you meet will say they wouldn’t change a thing…wouldn’t trade
this experience for anything. I’m not them. I would trade it all,
everything I learned and every wonderful person I met, trade it in a
heartbeat for Ben to be here with me, for Ben to be healthy.
I cannot have my selfish wish. So I take Ben’s gift and cherish it, do my
best to remember the lessons his life taught me, and make the most of life
as it comes to me each day. I try my best to enjoy this “trip to Holland”
and to act as unofficial tour guide to some who have just arrived.
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I would much rather tell you my story than
put it in writing. But here it goes. I tell everyone that Brittany is my
little angel. Well, she’s not so little anymore; she just celebrated her 13th
birthday. But she will always be my special angel.
"God Sent To Me An Angel," by Paul Dammann, captures some of the feelings I have
about her and her special needs. The first verse goes like this:
God sent to me an angel;
It had a broken wing.
I bent my head and wondered,
“How could God do such a thing?”
It wasn’t until Brittany was three months old that we discovered she has PEHO
Syndrome, a very rare disease. The first distinct signs are low muscle tone,
jerks and loud outbursts of crying that usually start when the baby is 2 weeks
to 3 months old. Vision problems, obvious developmental delay and infantile
spasms also appear. The progressive nature of her condition means that
Brittany needs constant observation, careful positioning and many things to
support her physically and medically.
While sitting at my baby daughter’s side in the hospital, I was amazed by her
roommate’s mother. I was inspired by her positive, matter-of-fact approach to
loving and caring for her child. Through our ongoing friendship I learned not
to feel sorry for myself; that would only make matters worse. I experienced
first hand how much parents can gain from one another. I think that is why I am
driven to reach out with information and encouragement to other parents.
My attitude adjustment has also made a wonderful difference in how I look at my
angel and enjoy her beautiful red hair, her laugh and her cute smile. I make
sure her life is filled with music, touch and love, the things she likes most.
She makes brief visits to her “circle of friends” at school twice a year. She’s
involved in Girl Scouts, selling alot of cookies to her caregivers’ families and
their friends.
And even though I still think it is unfair that PEHO Syndrome limits her life,
Brittany is Brittany, and she will always be my special angel!
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"Family" has a
Broader Meaning when Paired with "Support"
by Kimberly Holloway-Sommerville
"Family" and "support" seem to be two words which are very
important to a family. This became especially true in our family when our
daughter, Laicy Paige, was born. Yes, it was the typical pregnancy. Yes, Down
Syndrome were the words we did not want to hear. And yes, it hurt a lot. But
within minutes "family" became more than just us: mom, dad, brother and baby
sister. "Family" became our doctor, friends, extended family and people who
just wanted to help. Family was all around us, in one way or another, offering
encouragement, support or just a shoulder when we needed one. Still, I felt
alone with my child in a scary world.
This scary world changed in one afternoon when Laicy was three weeks old. I was
in a restaurant, just sitting there holding my baby so tight. I was watching my
son jump in the play area, wondering what our future would be. As I played out
the different scenarios, a child came through the door and into the play area.
He was excited to jump in and play with my son and I watched him for a few
minutes. When his mother came in to sit, I asked her the question I already
knew the answer to.
"Does he have Down Syndrome?"
"Yes," she replied.
I asked a few more questions about school and life before I finally said, "My
baby has Down Syndrome also." To my surprise, she sprung from her chair, held
her arms out to Laicy and said something like "how wonderful!" I am ashamed to
say I cannot remember exactly what it was she said because it was not my ears
listening - but my heart. And my heart, for the first time, was happy.
She went on to talk about things I never noticed, and things I would never
forget. I told this stranger all of my feelings, fears, and dreams for my
child. We talked for hours. And when I left, the world was no longer scary.
It was different, but not scary. Although I hadn't realized it, this was the
support I was searching for. And, this person became part of our "family" even
though she didn't realize it.
"Support" took on a new meaning that day.
Support became sharing stories and feelings with people who have experienced the
same unique things we have experienced as parents and as a family with special
needs.
"Family support" means a lot to us. We have learned to never underestimate its
significance in our lives. But, it becomes most meaningful and heartfelt when
received from someone who has walked on that same path that you have.
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Emily Perl Kingsley draws a pretty good picture of what
it’s like to be the parents of a child with special needs in her essay, “Welcome
to Holland.” But some of us have more difficulty adjusting to the change in
itinerary than others do. In fact, I once described my own experience as being
something like the destruction of the Twin Towers on September 11th because it
came as such a shock and rocked my personal world.
I had waited longer than most to have my first child. Being a parent seemed
like such a difficult and demanding job that would require more love than I had
to give, and a failed first marriage did not help either. Then I met a man that
I thought would be a wonderful father. We attended Lamaze classes faithfully
and looked forward to welcoming our bouncing, happy, healthy baby.
Those dreams were shattered when the pediatrician told me Jason was having
seizures and probably would not live through the night. I received this news
while my husband was out celebrating the birth of our son. Despite my shock I
was calm enough to call our pastor to request emergency baptism. The next day
Jason was transported to a hospital with a newborn intensive care nursery.
The sorrow of my broken dreams flooded over me when I saw the empty car seat as
my husband and I drove home. Three weeks later my anguish and pain welled up
again when the neurologist described the effects of our son’s severe brain
damage. He said Jason would live a short, difficult life, unable to develop
even the simplest motor skills, and he would have profound mental retardation.
I wish I could tell you the neurologist was as wrong as the pediatrician had
been, but he wasn’t, except the part about a short life. In many ways Jason was
healthy, just like we had prayed for, but he lives in a twisted body without any
voluntary muscle control. This leaves him totally dependent on others to meet
his needs. We can only guess when something is wrong or what it might be since
he cannot tell us.
We have learned to adjust our priorities and expectations. We have found it
necessary to view life from a vastly different perspective. Now we know that
the value of a person’s life does not depend on what he can do or learn, but
rather on how well he teaches us to love one another and appreciate the fragile
gift of life. The silent teacher in our home has turned our broken dreams into
a mosaic of love and purposeful living. We are blessed indeed and called to
bless others by sharing the story of our life-changing experiences.
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Dancing with
my Sons by Debbie Smith
Our identical twin sons were born two months prematurely. I
was a registered nurse with experience working with premature infants. It
helped - a little. I had a master’s degree specializing in psychiatric
nursing. So when my sons were diagnosed with an Autism Spectrum Disorder, one
would think that my education and career experience would have provided me with
a base of knowledge to adequately understand, prepare and “deal” with the
difficulties. It didn’t.
The truth was, I was a mother first, completely humbled by how little the
textbooks and “career experience” can prepare you for what the parents, the
children, and the family as a whole, experience. Unless you have been the
parent, sibling or someone living with a child with special needs,
understanding, and, maybe more importantly, feeling, the dynamics involved, will
always be limited. Just as reading about, or, watching a complicated dance will
never allow you to step into the dancer’s shoes with the same proficiency
obtained through endless hours of exhaustive practice. There are days with my
sons that we stumble, step on toes and take too many steps backwards in our
efforts to cope or help them learn something new. But there are also days that
we almost instinctively relate, taking turns leading and following as they learn
what earlier seemed so difficult.
There is an abundance of literature regarding autism. Unfortunately, it seems
to be because there is an explosion of children being diagnosed with autistic
symptoms. Phrases in major publications such as, “the new face of autism”, “mindblindness”,
and “shadowing” are but a few indicators acknowledging a growing awareness of
“borderline” symptoms in children. Often times, borderline symptoms create much
confusion in the interpretation of the problem and subsequent potential
treatment. This results in less than desirable support medically, educationally
and emotionally.
We do know that early identification and intervention with a variety of select
treatment modalities are, at the very least, beneficial. What treatments we
select for our children depends on our knowledge obtained through literature,
seminars, networking with a variety of professionals and other parents. What
ultimately helps to give us a boost of confidence in our choices, is what one
might call the instinct we developed with our children as we danced.
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Meet My Child, Please
It is common to be concerned about our child when he is facing a
new situation. Starting a new school year is one of the most common, especially
if there is a new teacher(s) in the picture. Or it might involve some
after-school activity. One parent wrote a short letter and gave it to her
child’s new teacher and other staff who’d be working with him. This is based on
her letter. Personal information was changed, but it is included here as an idea
that might be helpful for others.
Dear Ms. Stark,
I’m writing this to introduce you to my son, Erik Smith. He is 7
years old and he has Asperger’s Syndrome which is a form of Autism. Fortunately,
he is only mildly affected. Erik is very thoughtful, kind, polite, smart and
likes to please and loves everyone. He also tries very hard and is likable. His
interests are painting, drawing (any kind of art), science (how things work) and
astronauts (talks about this a lot).
Some of Erik’s troubles are participating in PE and social skills. He is very
visual, so explaining a game is not good enough. Erik will need to
sit out for a few minutes to watch before he plays. He also
thinks he needs to go to the nurse frequently. I would rather he didn’t because
he
will “feel” the pain a lot longer. Erik is a talker and does
make an occasional noise. I don’t think he can help this though. Sitting is very
difficult so he will be up on his feet or knees. Nothing we have
tried has helped with this yet. During lunch, Erik will talk too much, and he
eats
very slowly.
Some things that will keep Erik in control are a calm voice,
deep pressure (if he starts to get anxious) and his friend Jason Peterson. I
also am able to help if something comes up. I have not mentioned
everything about Erik and am willing to talk to anyone anytime. Please call me.
I will come and talk to you if you have questions or concerns. My home number is
765-4321; we have an answering machine which we check frequently. Or you can
email me, lisa99@aol.com..
Thank you for your time.
Lisa Smith & Erik
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"Angels
Among Us, Now that’s Normal" by Joyce Wolter
There’s a tear in my eye that will never go away. That tear
represents all the “firsts” that never came: the first steps, first
sentence, and even the first time Tupperware mysteriously appeared on my
kitchen floor. (Although that did finally happen three years later than
typically expected).
As parents of three children, ages 14, 11 & 7, our lives are never quiet.
By adding a disability to the mix, we realize that something will always be
going on! School functions, school dances, IEP meetings and doctor
appointments, how we long for a “normal” week.
Several years ago, I worked with the Windmill Project. I loved my job with
Windmill. Raising money for a project that I truly believed in was very
rewarding. But at that same time, I felt as if my life revolved around
“disabilities.” I worked with it all day. Then I went home to my little
girl and watched her struggling to do even the most minor of tasks. I felt
it was time for a separation.
In my quest for a “normal life,” I broke away from the Windmill Project a
few years ago and took a job in a clinic as the office manager. (Less
stress? I don’t think so!) Now my life revolved around insurance and medical
bills at work and at home. It seems we gravitate toward what we know.
Early this spring Wilkin County was in need of a new Parent Consultant for
the Windmill Project since the previous Consultant relocated out of state.
After much thought and consideration, I once again joined the Windmill
Project, while maintaining my job at the clinic.
Between school functions, school dances, IEP meetings and doctor
appointments, how we long for a “normal” week.
I wasn’t sure what I was getting myself into. But after our first meeting,
I knew. I realized how much I missed the people involved with Windmill. Many
of them have been there since Windmill’s first meeting. Others were new to
me. The excitement and conviction of our original mission were still there
-- “parents supporting parents.”
True, all have children with different needs, but we have mutual respect and
know there is something very unique about our situations. It felt so good to
be in a room full of people who really knew how it felt to be a parent of a
child with a disability. Regardless of the type of disability there are
parts of our lives that are the same because of our children.
After all, how many friends who have typical children know what you are
experiencing... being told for the first time that your child has a
disability, knowing what an IEP is, or any of the other acronyms we must
learn? Not many I’m sure.
I know that “normal” is different for everyone. Our normal just happens to
be what it is: Doctor Appointments, IEP meetings, school dances, and
sporting events, with a few surprises thrown in, just to spice things up!
Would I trade my normal for someone else’s “normal?” No! How would I handle
it, it’s not what I know.
Through these special people and our children, our lives have been touched--
as by angels. Having a child with a disability has brought us many
experiences we wouldn’t have otherwise had... not all of them bad. True we
could do without doctor appointments, medications and IEP meetings. But it
was through our experiences that we met a host of wonderful people.
That special teacher who helped us when our daughter was just a baby, the
Occupational Therapist who taught her how to suck her thumb, her vision
teacher who helps us understand not only the “vision” problems, but the
daily life decisions we need to make-- these are the special people who help
define our “normal.”
Through these special people and our children, our lives have been touched
-- as by angels. We are also thankful for all the parents who have “been
there”– the parents of children with special needs. Who better to honestly
tell you about a “new” procedure they want to try, or a new teacher you’ve
never met? They will give you the most candid answers of anyone. They know
the fear, frustration and joy of having a child with a disability.
Windmill’s annual Parent Retreat is coming up in April. I hope to meet many
of you there so that you may find the answers you are seeking and the
support you need. Meet new friends and touch a few lives with your unique
knowledge. And maybe even have a few “normal” hours with your spouse, friend
or yourself.
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- By Donna Chan 
