"Nooooo, my child is JUST fine..."
[aka Denial is not just a river in Egypt]
My son Wyatt was born with the assistance of a wonderful
midwife at home on June 17, 1994 - the day the infamous
O.J. Simpson was followed by millions of viewers riding
down the L.A. freeways in a white Bronco. Wyatt was awake
and screaming for food every two hours until he was two
and a half years old. As a baby there were signs that he
wasn't quite the way other babies acted - he would make
self-stimulatory motions with his hands and refused to make
eye contact even with someone inches from his face. He made
the advances other babies made, a tad delayed, but went
into a semi-silent world around 18-20 months, during the
period toddlers receive the Measles Mumps Rubella [MMR]
vaccination. His head was rather large for his body and
became the directional guidance if tipped in any direction
while standing. He was tested for hearing, vision and language,
showing a major delay in the latter. Wyatt's brother, Cody,
was then born at home and 2 years later his father and I
entered divorce, though not due to the issues with Wyatt
as happens with so many families.
"PDD NOS… What does
THAT mean?" So read the diagnostic abbreviation
clearly typed on the report I received in the mail after
spending an anxiously awaited day at the University of California
San Francisco with my son and the distinguished Dr. Bryna
Siegel, Director of the Pervasive Developmental Disorder
(PDD) Clinic. My son had just turned 4 years old at the
time and his diagnosis was "PDD-Not Otherwise Specified",
meaning a specific diagnosis such as Autism was not appropriate
but there were social, speech and behavioral delays with
nuances thereof. With this tidbit of information our lives
began down a different path than we had expected.
Following this diagnosis were years of fighting the California
school system, now touted as one of the worst in the United
States, to provide special needs services for my son. A
private school was also unable to accommodate my son's behavior
problems which included monopolizing the teacher's attention
and the inability to sit up on his own due to weak torso
muscles, thus leaning on teachers and assistants. His head-banging
on walls, cement walkways or anything else within a foot
of him scared the staff immensely. He would wander off and
play in a corner alone or find something to focus on and
just stray. He rarely made eye contact and for the most
part was only comforted by deep compression of his entire
body. We were advised we needed to "find a different solution".
Translation: Don't let the door hit you on the way out.
Entering the public school
system at Kindergarten meant years of child
advocacy fees and fees for private speech therapy, meetings
with teachers and special needs staff, non-reimbursed privately
paid evaluations, and anguish. Although an integral part
of his services, individual speech therapy at school was
removed by his teacher during that first year because he
had passed (by one point) a 20-year old test which did not
even cover his pragmatics and is no longer used in private
practice. Only an independent evaluation and threatening
legal suit at district level with the resulting report and
professional suggestions brought it back as part of his
IEP, or "Individualized Education Program". Subsequent years
introduced blatant lies and games played with us and other
parents by school staff as to whether services were really
being provided or not.
Another diagnosis a year later by Dr. Deborah Sedberry
of Oakland Children's Hospital finally gave us something
to work with, school-wise and in other areas. "This
is a textbook case of Asperger Syndrome". At the time
this did not fall under Autism in medical realms, though
today it is more thought of as similar to high functioning
Autism. Services available through Regional Centers in Northern
California were denied my son because "it's not straight
Autism".
Through the public school system we were finally able to
meet my son's individual needs after 3-4 years of fighting
and thousands of dollars: Speech therapy, occupational therapy
(OT), adaptive Physical Education, behavioral support and
a one-on-one aide throughout the school day. His team at
Black Lake Elementary of Olympia is wonderful and we couldn't
ask for more caring and supportive individuals.
Public schools are run similar to a business in that monies
are paid to schools for attendance of a special needs student
and are paid out by the respective schools and district
for whichever services are provided, both internally and
under contract. Of course, if less services are provided
to students and thus less expenses are incurred there is
certainly a higher margin per head. Business 101. Parents
are so very unaware of their legal rights and of what services
are available through the system - it is truly disheartening.
In defense of public schools, there is only so much money
to go around with a growing need for services to students.
Private schools in general are not able to meet the needs
of many such students so an increasing number of parents
choose to homeschool, something which is under fierce fire
from those in favor of public schools. I am not complaining
about local Washington schools who have helped us immensely,
rather explaining experiences gained from the California
schools. We whole-heartedly support homeschooling efforts
to address the needs of these children, and I had started
doing this part-time at home because he was so bored at
school (2nd & 3rd grade in school, already bored with
6th grade software).
In speaking with a number of men who had done martial
arts for discipline and physical activity, many
had suggested the art of Jiu Jitsu. This is a martial art
which uses body leverage in favor of punching and kicking,
my son's mimicking aggressive moves at inappropriate times
being the reason for this choice. Jiu Jitsu helped my son
with building physical strength and coordination plus self
esteem. Since he was uncomfortable being the complete focus
of individual sessions, his younger brother gladly stepped
in and shared this time in order to prove his worthiness
as his opponent. Sibling rivalry at its best! In addition,
it is common for special needs children to be the target
of demeaning comments and actions by other children - and
even adults - so this was also a way for him to be able
to defend himself if necessary. Wyatt had continued with Kajukenbo
but the noise level, expectations and activity were too much
for him in group as well as individual sessions. Again,
he would also mimic at inappropriate times and created concerns
at school with requests to discontinue this activity due
to zero tolerance of violence at school.
Dietary
alterations and bodywork positively affected
Wyatt's behavior and sensory stimuli tolerance. Per several
online support groups and Listserves there are many stories
of positive changes in children's behavior and physical
well-being when dairy, gluten/wheat, soy, sugar, food coloring,
eggs and a number of other culprits are removed from meals
and calcium/magnesium/vitamin B-6 added to the dietary intake
of these children. Some use enzyme therapy with positive
results. "Brushing" of a child's body with a special
rectangular plastic soft-bristled brush helps to relax sensitivity
to sensory stimulation. Use of essential oils stimulates
the olfactory nerve, which initiates chemical communication
in the brain and can calm the child experiencing tantrums
and change moods from anxious or angry to a more relaxed
state. Several blends worked wonders for him as well. Epsom
salt baths and cream tend to help many and I have personally
seen some very interesting improvements, such as very clear
and focused thinking and speech, after such a bath. Also
something which helped was a magnetic sleep system, which
helped pull him into a deep sleep and allowed his brain
to process language better. Having professional training
in bodywork with advanced training for special needs children
I would also do slow massages with a home-blend of oils
and salts. Many parents choose the allopathic route and
medicate their children with such products as Ritalin™.
Each family must know what is best for them and must consider
all side affects and health risks.
Something which was very frustrating to me, and I'm certain
for many such parents not sure of the situation, is the
resistance to speak up by people afraid of hurting anyone's
feelings. By mentioning "there might be some issues
here" and saying something for the good of the child
by alerting the parents to observations and knowledge, parents
would have outside feedback and be better able to deal with
the child's problem. Had someone swatted me in the face
with reality while I was sleep-deprived, ignorant of the
signs of disabilities and others in denial, I would have
taken action much earlier than I did. It frequently takes
months of paperwork and waiting for appointments to get
into speech and psychological evaluations. Now the diagnosis
of Autism has reached approximately 1 in 166 boys ( unofficially
1 in 100 children per my recent discussion with a local
Lakewood, WA Neurologist who works daily with Autistic children)
the medical profession and politicians are finally taking
notice.
I ask you as a parent - if there is any concern whatsoever
that your child might have learning disabilities, sensory
issues or language delays - please do not hesitate to visit
your pediatrician or health care provider, bring your concerns
to their attention and demand evaluations by specialists
should your concerns grow. Trust your gut feeling and do
not allow apathy to destroy your child's future. The earlier
you address such issues, the greater the opportunity for
your child to reach their full potential through your and
others' intervention. Our pediatrician said "boys talk
later…" and "diet has nothing to do with it…"
I should have changed care providers on the spot and regret
staying after that visit.
Our precious little Wyatt was killed in a car
accident on August 19th, 2003 on I-5 in Tumwater, WA
along with his father. His younger brother survived the
fiery crash thanks to the quick thinking of other drivers
and we are grateful to no end. We started the Wyatt Holliday
Foundation in his spirit to help others avoid similar experiences
and to support them in their fight to do what is right for
their children by providing information and a dream.
Thank you for caring, and hug your kids.
Therese Holliday
aka Wyatt's Mom
Help Us Help Kids - http://www.justgiving.com/pfp/whf
Donate to our cause!
- http://www.justgiving.com/pfp/WyattsMom
