Where's the Manual?
Dan Coulter, Coulter Video, February 22, 2006
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If your child is diagnosed with a
significant disability, disorder or condition, it's pretty
common to start a frantic search for answers. Is there a cure?
If there's no cure, where's the manual I can use to do exactly
the right things to help my child make his life as good as it
can possibly be?
How do I deal with his behaviors? Can I help him change them?
Should I? Should she be medicated? Should she go to public or
private school? What kind of doctor should he see? What should I
tell her siblings? Can I help him learn to support himself when
he grows up? What should I do about this and this and this?
My wife, Julie, and I went through this process twice. Our son,
Drew, has Asperger Syndrome (AS) and our daughter, Jessie, has
Cystic Fibrosis (CF). AS is a neurobiological condition on the
higher-functioning end of the autism spectrum. CF is a genetic
disease that tends to produce life-threatening lung infections
and digestive problems.
Yep, we've had a double dose of "special needs." The good news
is, our 22 and 20-year old kids are doing great and we've had
big fun with them as they've grown up. Of course, we also had
tough times. Some of the toughest were dealing with the
unknowns. But the more we learned about our kids and their
conditions -- and found ways to make their lives better and
their futures brighter -- the better we felt.
There's nothing that gives you a charge like helping your child
master a skill or conquer a problem, especially if it helps put
your mind at ease about his future. And whatever a child's
challenges, a caring, determined parent (or two) can make a
dramatic difference in her prospects for the future.
Thinking back on raising our kids, I thought I'd share some of
the things that helped us.
Start your search for answers quickly. Even when you can't
see the end of the road, or know exactly where it will lead you,
it helps to know you're moving in the direction of helping your
child. For example, we attended a CF conference soon after
Jessie was diagnosed and it helped point us in the right
direction. One of the first things we heard that stuck with us
was to think of our daughter as a child first, and then as a
person with CF. Parents tend to treat kids differently if they
see them primarily as patients. On the Asperger Syndrome front,
Julie also attended educational conferences whenever possible to
learn more about AS.
NETWORK, NETWORK, NETWORK
Talk to professionals, foundations, support groups and
gather as much information as possible from materials related to
your child's diagnosis. If you don't have a diagnosis or aren't
sure you've got the right diagnosis,
search for information about your child's symptoms or behaviors.
Drew had seven successive diagnoses
before we got one that fit like a glove: Asperger Syndrome.
Looking back, it appears now that some of these diagnoses were
influenced with the specialty of the doctor making them. For
example, a psychologist diagnosed "personality disorder." Of
course, many of these diagnoses came before Asperger Syndrome
was included in the U.S. Diagnostic and Statistical Manual. Some
of the best information we got came late in this process from a
developmental pediatrician, who had experience with children
like Drew. If we'd known that such a specialty existed at the
beginning of our search, we could have honed in on a more
accurate diagnosis more quickly.
You may see a battalion of specialists, but none of them
will spend as much time with your child as you do. Write down
your concerns, observations and questions before a doctor visit
so you can be sure you won't forget anything. If a
professional's diagnosis doesn't match what you see in your
child or their treatments don't help, let them know. If a
professional doesn't take your concerns seriously or doesn't
explain things to your satisfaction, it's appropriate to search
for someone who does.
I am NOT saying that you should diagnose your child yourself and
shop doctors until you find one who agrees. I am saying you
should find a doctor or other professional who really listens to
you and is willing to consider your input seriously -- and one
who can explain his diagnosis and recommended treatment in a way
that makes sense to you.
When Jessie was an infant, she had a number of symptoms that our
pediatrician didn't take seriously during her first year of
life. My wife took them seriously and started to research. Based
on reading Dr. Spock's book, "Baby and Child Care," at Jessie's
one year checkup she described the symptoms again and asked the
doctor if our little girl should be tested for Cystic Fibrosis.
The doctor laughed off her concerns and said, "Don't be silly."
He was the doctor, so we listened.
After two more years of colds, ear infections, stomach problems
and other symptoms, and while she was under the care of an
allergy specialist, we had her tested and discovered that she
had CF. We could finally start getting her the treatment she
GET ANGRY, GET DISCOURAGED, GET OVER IT, MOVE ON
We were angry at Jessie's first pediatrician and beat
ourselves up for not having her tested sooner, but that didn't
help us or her. It was also natural to ask why she had to have
CF, but that was a waste of time. What did help was finding good
doctors and hospitals, learning as much as we could about CF and
following an aggressive treatment regimen that included
two sessions of respiratory therapy each day. In dealing
with conditions like CF and AS, there
are times when you feel overwhelmed, that you just don't know
enough to make the right decisions. If you find yourself feeling
like that, remember that you're not in this alone. There are
professionals and support groups and other resources available
and you can learn a lot from them. You're also going to be
learning more about your child every day. You can't gauge how
well you're going to do by what you know at the beginning of the
process. It's bit like having a baby for the first time. Some of
it will be trial and error and everyone makes a few mistakes,
but you'll learn more and more of the answers and become more
confident as time goes by. As for doctors, you can find a gem
the first time out, but if you don't, keep looking.
BECOME AN EXPERT ON YOUR CHILD'S SCHOOL
School was a joy for Jessie. Less so for Drew. A preschool
teacher saw his problems interacting with other kids and
suggested we have him tested. At first we resisted. He was such
a bright little guy, how could there be anything wrong? But then
we saw her point and began our search for the right diagnosis
and treatment. During most of Drew's early grade school years,
we lived in a county with an exploding population -- and a
school district struggling to build schools and hire teachers
fast enough to keep up. They simply didn't have programs to
support children like Drew, who got good grades but had trouble
connecting with other kids. It wasn't that the school
administrators were bad-intentioned or negligent, but they were
busy putting out fires. Our son was
smoldering, but he wasn't on fire. We were
ready to start a search for a good private school when we
moved to another part of the country and found a public school
district with the staff and resources to really help a kid like
Drew. Through a series of diagnoses, he got support based on his
needs, even before his diagnosis of Asperger Syndrome at age 14.
But it wasn't just that the school district was good. Julie got
to know the teachers and administrators. She provided
information to the school and served as a parent volunteer in a
number of ways -- including ways not directly related to our
son. She found that establishing relationships with the school
staff helped her become part of a team that took both Drew's
needs and the needs of the school into account. This was often a
key to working around obstacles.
As a part of this process, Julie enlisted a number of angels in
the school. Angels are teachers or counselors or administrators
who take a special interest in your child. Someone who will look
out for him and who he knows he can go to when things get rough.
Drew's about to graduate from college and we take great delight
in regularly getting in touch with these angels, giving them
updates, and giving them credit for all they did to help him
Julie also kept great notes of her interactions with the school,
including Individual Education Plan meetings and other contacts.
Keeping accurate records helps when things are going well -- and
especially when they're not. For example, if you should find
yourself in a school district where your child is not getting
proper support, good documentation can help you work to correct
the situation. It's our experience that it's always best to be
as positive as possible when working with a school. Offering to
serve as a resource rather than appearing to tell someone how to
do his or her job has been a successful approach for us.
Also, frequent contact with teachers and staff helps you
determine whether supports put in place to help your child are
actually being delivered. If your child is supposed to get
speech therapy twice a week and it stops for some reason, you
want to know immediately, not at the end of the year.
When your child is not getting what the school agreed to or what
the law requires, you many want to seek help from a parent
advocate of a special needs support group. For example, here in
North Carolina, the TEACCH program provides parent advocates
where children on the autism spectrum are involved. Another good
resource to consult about your child's rights is
If you're moving, thoroughly check out the potential schools
your child will attend and make them a significant factor in
deciding where to buy a house.
KEEP YOUR EARS OPEN
Support groups, friends and Internet bulletin boards can all
be great sources of advice. We've benefited from all three
throughout the years. But we've also learned to check out
informal advice with a critical eye. People's opinions are based
on their experience, and their situations may be far different
from yours. For example, we love the expression, "If you've seen
one kid with Asperger Syndrome, you've seen one kid with
So we recommend that you keep your ears open. Listen to
everyone, then do what makes sense to you. The more time you
spend with your child and the more you learn, the better your
radar will tell you who has good insights. The bottom line here
is that whatever is diagnosed or prescribed or recommended by
others, you as a parent have ultimate responsibility for making
decisions for your child. The better informed you make yourself,
the better decisions you can make.
Many kids with disabilities face a lot of rejection. Having
their home life be a haven of good feelings can be an important
self-esteem safety net. And while I wouldn't wish a disability
on anyone, you can find positive things in almost any situation.
For example, dealing with our kid's challenges has brought us
closer as a family. Also, if your child hears you complaining,
you may make him an inadvertent messenger. Consider the
consequences of having your child say to a teacher or principal,
"My mom and dad say that you're _________." (Fill in the blank
with some unkind thoughts you've had about someone.) Being
positive and encouraging around your child can help him become a
problem solver throughout his life.
TAKE CARE OF YOURSELF
We've learned you can take better care of your child if you
take care of yourself. Finding some time for yourself -- and
couples finding time to be together -- helps you come up with
solutions to problems that seem insurmountable when you're
stressed. If you think you don't have time to relax or you feel
guilty taking time for yourself, do it because it will help you
help your child. Really.
EDUCATE YOUR CHILD -- AND THE WORLD
One of my favorite themes is that raising a child with
special needs is a 50-50 proposition. You need to prepare your
child to deal with the world, but you also often may need to
educate the world about your child. You can teach your child to
modify some odd behaviors, but that won't help him make friends
if classmates avoid him because they don't know why he struggles
to make conversation. Disclosing a disability is and should be a
personal choice for a child and his family. With that in mind,
we've found that kids are often willing to befriend a classmate
who's different if you just share a bit about why he acts like
he does. Helping classmates, potential employers and others
understand the reasons behind some of your child's behaviors can
sometimes make the difference between rejection and acceptance.
These are some of the things we've learned in raising two
kids with special needs. Drew will receive his bachelor's degree
in May and has already started his job search. He surprised us
during college by starting a novel with a first chapter that
impressed me as a writer. Jessie has a double major in music and
international relations and recently returned from a two-week
seminar studying government in Washington, D.C. She's kept
herself in such good health that she played in a college
marching band her freshman and sophomore years.
Sure, we worried a lot about doing the right things for our kids
as they were growing up. But if you're like us, you'll find at
some point that you have the manual you wanted.
You just have to write it yourself.
ABOUT THE AUTHOR: Dan Coulter is the producer of the video,
III: Understanding Elementary School Classmates Who Think
Differently." You can find more articles on his website:
Copyright 2006 All Rights Reserved Used By Permission
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