The following guest
column was written for First Signs by Mitzi Waltz,
©2001. Mitzi is the author of
several Patient Centered Guides that provide comprehensive coverage
on a variety of developmental and behavioral disorders, including
Autism Spectrum Disorders: Understanding the Diagnosis and Getting
It’s over. The seemingly endless process of doctor visits and
testing has ended.
If your child has been diagnosed with an autistic spectrum
disorder (autism or pervasive developmental disorder), you may
feel that your life as you know it is over, too. You’re faced
with a barrage of terms you’ve never heard before, professionals
who may or may not seem helpful, and friends and family members
who insist on handing you magazine articles about the latest
“cure,” but who don’t really seem to understand what you’re
going through. Most importantly, you’re faced with essential
decisions to make about your child’s health, education, and
Every parent who has walked this road before you has experienced
this moment of post-diagnosis paralysis. It really is too much
for one or two people to handle alone. It shakes your
confidence, and challenges your parenting skills and your
personal goals in ways you never expected. It can’t be
sugarcoated or wished away.
Right after the diagnosis, you’re torn between a very real
grieving process for the “perfect” child every parent hopes for,
anger that your child has been affected by this disorder, fear
about the future, and a parent’s innate determination to make
everything better somehow. Grief, anger, and fear are difficult
emotions, and it will take time to work through them. Seek
professional counseling and extra support if you need it. But
hold on to that core of determination for your child. Along with
hope (which you should never let go of, no matter what some
doctor, teacher, or relative may tell you), it’s going to be
your greatest strength.
So where will that determination take you from here? In the
absence of a medically proven, sure-fire treatment for autistic
spectrum disorders, there are many things to consider. The
following ten steps will start you on the right path.
1. Take a deep breath and begin to
use the professional guidance you have been given. Begin
to communicate and connect with your child and participate in
your child’s therapy. Begin to understand what is most helpful
to your child.
2. Get organized. Create a
filing system for your child’s medical records, Early
Intervention and school records, articles and pamphlets, and
other items you want to close at hand.
3. Inform yourself. Read
books, surf the Web, and have in-depth conversations with any
expert parent or professional you can buttonhole. Find out about
print and online resources that can keep you abreast of the
latest news about treatments.
4. Based on what you learn,
evaluate treatment possibilities,
with a focus on your child’s unique characteristics and needs.
5. Assemble your treatment team.
This should include a pediatrician who understands developmental
issues, and who will be your child’s primary care provider.
Depending on your child’s needs, you may also need a
neurologist, neuropsychologist, psychiatrist, speech therapist,
occupational therapist, home-based intervention therapist, and
others. If your child’s needs are especially complex (for
example, autism plus epilepsy or cerebral palsy), ask your HMO
or county developmental delay services about case management
6. Learn your child’s rights,
and take steps to secure them. Find out about Early Intervention
programs, regional services, county developmental delay or
mental health programs, and special education programs. Start
the application process for services your child is eligible for.
Learn about the Individuals with Disabilities Education Act
(IDEA), the Americans with Disabilities Act (ADA), the
Rehabilitation Act, and other laws that can protect and help
7. Understand your insurance plan.
Find out what it does and doesn’t cover. Learn how to get better
services for your child, including how to appeal decisions you
don’t agree with. If you are uninsured, find out about Medicaid
and state-sponsored plans for uninsured children.
8. Network with other parents.
Join a local or national group that can keep you informed. Find
other families nearby or online who are coping with the same
9. Take steps to nurture your
entire family, including your partner and other children.
It’s easy, and sometimes necessary, for one child’s disability
to take precedence over everything else. Most parents have to
deliberately make time for giving the rest of the family special
10. Nurture yourself. Do
what it takes to maintain your health and wellbeing by eating
right, exercising, taking care of any medical needs, and making
sure that you have adequate emotional support.
The worst is over, but the hard work has just begun: You must
take the lead in advocating for your child.
© First Signs, Inc., May 2001
Mitzi Waltz € http://www.mitziwaltz.com/
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