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by Stephanie
Moss, Babies Can’t Wait Coordinator and Jody Steinberg
“JP is my fourth child, but his birth was nothing like the others,” explains
Lorna Mullis. “In fact, he had to be resuscitated at birth. We were still
reeling from that experience, the next morning when doctors told us that he
had Down syndrome. Suddenly, our world was flipped upside down.”
Like many parents who discover that their child is different, the Mullises
launched a frantic crusade to help their child reach his fullest potential.
“We were compelled to do as much as we could, as fast as we could for JP. We
saw pediatricians, genetic counselors, pediatric cardiologists, physical
therapists, occupational therapists and more. Before we knew it, our lives
revolved around his appointment calendar, leaving precious little time for
our other children.”
For families like the Mullises, an early diagnosis can put your child on the
treatment path at the earliest recommended time. For other parents of
children with developmental issues, a lack of a diagnosis leads to months of
uncertainty, second-guessing, even doubting their own ability to parent
rationally. Parents who worry their child exhibits signs of slow development
are often dismissed as naďve, or over reactive. Even pediatricians, used to
seeing healthy children develop at individual pace, can miss the diagnosis.
But others can recount all too well the telling signs of a baby who isn’t
progressing like his peers. Following movement with their eyes, turning
their head, rolling, sitting up, crawling, trying to walk, using words by
age 2 … if a baby continues to miss the typical milestones month over month,
or if their social, physical or eating habits seem atypical, parents should
follow their instincts sooner rather than later, says developmental
pediatrician Alan Weintraub, MD.
When something is amiss, early intervention (EI) is key to helping your
child reach his fullest potential. And a parent’s instinct is often the
first step to getting the wheels of early intervention rolling.
“I tell parents, let’s take what you are saying seriously. It might be
nothing. But if there is something, we’ll get started” on diagnosis and
treatment, explains Weintraub.
Typically, when Weintraub meets a new patient, he will review his
developmental history and family medical history in extreme detail, followed
by a series of diagnostic tests, developmental evaluations and a hands-on
assessment.
“We don’t always have an exact diagnosis or medical reason for the delay,
but you can see autism spectrum, language delay, etc.,’ explains Weintraub.
“That’s when we hook them up with early intervention. EI is critically
important. Whether it is language therapy, speech, occupational or physical
therapy, applied behavior analysis… whatever is appropriate needs to get
started.”
“The nervous system is changeable,” explains Weintraub. “The sooner we can
identify a child and get them into services the better they’ll be able to
adapt to the world. It can potentially change the course of where the child
is going in the long term.”
What is Early Intervention?
Early intervention is the process of identifying children who are at risk of
or determined to have a condition or special need that can affect their
development, evaluating developmental abilities and providing services, such
as therapy, learning and family supports, that can lesson the impact of the
condition and maximize developmental potential.
Research has proven that learning and development is most rapid in the first
five years of a child’s life, and that early intervention increases the
developmental and educational gains for the child, improves the functioning
of the family and reaps long-term benefits for society.
“If children begin intervention early, we have a fairly good chance of
capitalizing on developing muscles, strength, range of motion etc. and
manipulating it so that it will work for the best interest of the child,”
explains Lakita Garrett, M.A.,CCC-SLP, the Pediatric Rehabilitation Manager
at Hughes Spalding Children’s Hospital (HSCH). “There may be developmental
milestones that can be achieved on target or close to target.”
“The purpose of intervention is to make them as functional as possible in
order to participate in activities of daily living and gain some degree of
independence,” adds Garrett. Of course, defining independence is as
individual as the child.
Babies Can’t Wait (BCW) is Georgia’s early intervention program for infants
and toddlers from birth to age 3 with special needs. The goal of BCW
services is promote and improve each child’s ability to learn and to
participate in activities, routines, and inclusive settings valued by the
child and family.
Following a medical diagnosis or referral, BCW will evaluate a child to
identify his strengths and needs and develop a plan of services that will
promote and improve the child’s ability to learn and to participate in
activities, routines and inclusive settings in a goal towards independence.
The BCW service coordinator also guides the family through the maze of
resources and services to address those needs and helps determine how to pay
for services (private insurance, Medicaid, family funding, PeachCare for
Kids, etc.)
An individualized family service plan (IFSP), which identifies goals for the
child as well as the strategies and resources needed to achieve them (ex:
therapy, family training, equipment), is developed for each child, with
parental participation. Evaluation and assessment, IFSP development and
service coordination are free to every family. The service coordinator also
helps the family begin to plan for continuing services after the age of 3.
Until recently, therapy and medical treatment were the limited domain of
clinics and hospital outpatient centers.
“I would drive JP to the clinic twice a week (often in tears) for his
therapy sessions, where I would watch very competent therapists work with
him. But it seemed that a child with developmental delays needed all of the
opportunities they can get to practice new skills and twice a week was not
enough. We needed a new plan.”
That new plan came in the form of policy changes at BCW. To comply with
directives in the Individuals with Disabilities Education Act (IDEA), BCW
Georgia began providing therapy services in natural environments when JP was
still a baby.
Natural environments, such as preschool or home, are the places where a
child normally spends time or can interact with children of the same age.
Providing services in natural environments promotes using therapeutic
tactics in everyday activities. The therapist can use familiar toys and
items to teach specific skills and skill-building strategies to the child,
family members and caretakers. For the busy Mullis family, the switch made
sense.
“BCW helped us find learning opportunities in all of our family activities.
The important people in JP’s life began receiving support and training to
help him practice new skills. For example, he practiced walking on the
bleachers at the ball field where our family spends a lot of time. JP went
from being able to practice twice a week at the clinic to practicing skills
every day, all day long.”
Weintraub emphasizes that parents should not despair or feel guilty if their
child’s diagnosis and treatment are delayed. “Whenever we start is better
than later – we sure can make it better if we can identify and intervene.”
Three-year-old John Taylor’s developmental delay wasn’t diagnosed until
eight months, when his caretaker alerted mom Monique Kenney that he wasn’t
hitting developmental milestones. Today, John attends weekly sessions at the
Pediatric Rehabilitation Clinic at HSCH, where his speech (ST), occupational
(OT) and physical (PT) therapists often work together, building on multiple
tasks with various benefits. For example, his OT will have him match puzzle
pieces while his PT will position so he must stretch and reach to play, and
his ST will talk him through the whole process.
“Treatment can be more consistent and intense in a clinical setting, which
has the tools and equipment to help bring the child to his/her maximum
functioning level,” explains Garrett. “The clinical setting is better for
John and many of our patients because we have the equipment here that a
child may need in order to maximize his current functioning level. Also,
other medical providers, such as physicians and nutritionists are in the
building, so we can provide a more thorough treatment session if questions
arise or an need additional consult.”
Another benefit of the clinical setting us that it allows the child to
interact with other children, and parents can form support groups with one
another, breaking the cycle of isolation that often affects families of
children with disabilities.
For Kenney, HSCH has been a blessing. Although he still bites and acts
aggressively at home and preschool, Kenney says John is finally beginning to
use words, and is walking and running.
“They’ve been so helpful,” says Kenney about John’s support team. “They
taught him how to walk and run, and how to talk. Before, he would point and
be so frustrated [that he couldn’t explain], but it’s getting better.” In
fact, John has even begun initiating tasks, says Garrett, an important
milestone in his progress. Although Kenney doesn’t attend all of John’s
sessions – “he’ll pay too much attention to me and not do the work,” she
explains – therapists give her tips for helping John continue to progress at
home.
The Importance of Family Involvement
Parental involvement, especially practicing the techniques taught in therapy
at home, is key to progress, adds Garrett. “When parents do not stay
involved in treatment, the child loses out. It prolongs therapy and can make
the child work excessively hard to maximize his/her function,” she says.
EI, natural environments and family involvement are all important, but
attitude can be the most powerful weapon in a parent’s arsenal, says
Weintraub.
“Developmental issues can foster depression and low self-esteem,” explains
Weintraub. “There is a lot of emotional overlay when you have neurological
and developmental issues. The more positive the environment, the better the
child will be. The attitudinal piece is very important. We talk about
planning for the future and giving the child the best possible support, and
we encourage optimism.”
Just a generation ago, parents were encouraged to send their children with
developmental disabilities away to an institution and move on with their
lives. Today, research has shown that with early detection and treatment,
familial involvement and community supports that include our children,
families can plan for a future that includes heretofore unseen quality of
life for their loved ones. Positive outcomes begin with early intervention
and an optimistic vision for the future.
“EI really is a godsend – it is a very powerful tool. I’ve been in the field
long enough to see if you do EI, the kids will get better,” says Weintraub.
“Will they be typical? It depends. Will they be better? Absolutely.”
Who to Call:
Babies Can’t Wait is a part of the Office of Children with Special Needs in
the Department of Human Resources Family Health Branch.
Children’s Medical Services assures that children with chronic health
conditions receive the special medical care they need and will coordinate
services and medical records for a child.
www.ph.dhr.state.ga.us/programs/cms/
For more information, contact: 800-229-2038 and ask for the number of the
BCW or Children’s Medical Services office in your area, or visit the BCW and
CMS websites at:
www.health.state.ga.us/programs/bcw or
www.ph.dhr.state.ga.us/programs/cms/.
Reprinted with permission from Atlanta Parent Magazine.
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The impact of a
disability can always be lessened to some degree by early intervention. |
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