1. Sweetest, bravest, most beautiful boy
Brian Henry Schutzius
February 9, 2001—November 13, 2005

2. The first thing that happens is that they whisk the baby away from you.
Often, you’re child is sequestered in a dark, impersonal, strange
smelling unit better fitted for a CSI Lab than for an infant in their first,
crucial, formative days.
You are not allowed to stay with your child.
From the beginning, you’re thrown
into a completely different world.
When things go wrong

3. Most new parents hear “congratulations.” Special needs
parents just get a laundry list of everything that is wrong.
No matter how bad it seems, you don’t
love that child any less.
Everything is different from what you have
planned for. Forget anything you’ve learned
about parenting—even if you have
other kids.
You are basically starting from scratch.
The first time I got
to hold Brian—
Valentine’s Day,
2001—five days
after he was born

4. Brian’s initial diagnosis
Bilateral Club Feet
Thrombocytopenia –low
platelets
Failure to Thrive
Reflux: Nissen
Funduplication/Mic-Key button
Sclarated cornea
Ventricular septal defect (VSD)
Brian spent two months in the NICU. It was a year later when
we finally learned he had a rare chromosome disorder; 11q 23
deletion; 12q 24.1 duplication. It still does not have a name.

5. At six months, Brian developed
Infantile Spasms
Progress stopped. He regressed. It was like he just went away.
Before Seizures
After the seizures

6. Seizures are the worst possible diagnosis.
Every time your child has one (and Brian had dozens per day), it is a
knife to your heart. It feels like a bit of your soul dies each time. The
feeling of overwhelming helplessness cannot be understated.
We tried at least a dozen different medications, all with various side
effects, to try and stop them.
The thing about seizures is that you never get used to them. They
don’t go away just because it’s Christmas morning. They don’t stop
even when you don’t think you can bear it anymore. They just keep
coming.
Brian would cry after most of them. Or he would just sigh—a kind of
deep sigh you would never imagine could come from a small child.

7. Please understand that we have to feel
proactive. Do not judge if we try:
Cranial Sacral
Therapy
Acupuncture
Music Therapy
Touch Therapy
Aroma Therapy
The Mozart Effect: "It is suggested that music with a high
degree of long-term periodicity... would resonate within the
brain to decrease seizure activity and to enhance spatial-
temporal performance”. -- Journal of the Royal Society of
Medicine.
Our kids are less active, we need to take extra care of skin
and hair. It is also a chance to connect on a personal level
when dealing with non-verbal children. Extra TLC can’t
hurt.
Stress can trigger seizures. Calming essential oil aromas
include: jasmine, ylang ylang, chamomile, and lavender
(except spike lavender). Bonus: Smells better than
medicines!
Aromas that can cause seizures: Eucalyptus; Fennel;
Hyssop; Pennyroyal; Rosemary; Sage; Savin; Tansy;
Thuja; Turpentine; Wormwood

8. Help us help you help us
*Fax or phone in prescriptions
*Give copies of any notes, lab results or x-rays
*Use e-mail correspondence
*Offer extra appointment time or special needs priority appointments
*Trust a parent’s gut feeling—we know our kids—we may not be able to express it
in medical terms, but we know if something is wrong—or what works
*Extra blanket and pillow. We are staying the night!
*Special symbol on the door to signal that this is special needs.
*Know that “this ain’t our first time at the rodeo.”
*Use a phlebotomist. These kids are notorious hard sticks. WE WILL NOT LET
JUST ANYONE “GIVE IT A TRY!”

9. If you can’t say something nice….
Best:
*Children are not a reward or
punishment
*I love Brian
*What a beautiful boy
*What can I do to help?
*We’ll take good care of you
Worst:
*Take away the seizures and
what do you have?
*I’m not going to imagine myself
in this situation!
*It’s your fault
*You should get a service
monkey
*He is so medically interesting

10. You know you are a special needs
parent when:
The ER Staff knows you on sight
You can find the hospital cafeteria
You discuss specialists instead of contractors or paint colors
Down Syndrome seems like a better deal.
You’re shunned at the playground
There is no playground equipment accessible for your child
You know all of the handicapped entrances around town as well as the
“best,” smoothest sidewalks.
You have the hospital phlebotomist’s cell phone number

11. What We Need
Brian finally qualified
for Medicare the week
he died.
*For medical professionals to see our child as whole
person, not just a myriad of problems
* Some type of Mothers in Stress team from the onset
*Special needs trust fund resources
*Respite care
*Help with the red tape and applying for benefits
*Someone to remind us to take basic care of ourselves
*Team doctor meetings or group clinics

12. You may think we are fussy but….
Our kids may be on a special diet. Please know that
unless specifically noted, all pediatric medicines
contain sugar.
Emla cream (numbing agent) can be very helpful
for deep muscle injections
Powdered medicines can be easily
given through g-tubes
We often had to hand scrape
the coating off each pill before
crushing
Number of times we were
prescribed medicines
with sugar despite
specific instructions not
to: 4 out of 5
We will go out of our way to
find compounding
pharmacies and special
supplies

13. Realize that you are woven into the
story of our lives
This quilt, made out of Brian’s clothes
includes part of a hospital gown and blanket.
When your child has
special needs, the
hospital is the place
you might spend
birthdays and
holidays. Our kids
will know more
doctors and
therapists than
teachers or friends.
The medical
community is part of
our everyday lives.
Your words come
back to us in a flash.

14. Brian may be gone,
but he’s not forgotten
*Brian is part of a medical research project in his name at
Baylor College of Medicine, in conjunction with The
Human Genome Project
*He is featured in the book Baby at Risk
by Ruth Levy Guyer
*His sister Emma holds a book drive every year
in his name
*The Alexandria City Swim Team, The Chinquapin
Wahoos, give out a Team Spirit award in Brian’s memory
each summer
*His family will always consider themselves part of the
special needs community