Those who know me remember me as a skinny kid that played in the marching band and sang in the church choir on Sunday.
And of course, I was the preacher's son. And you know what they say about the preacher's kids. Well, now I am 47 years old. I
have grown up and out. For better or worse, I'm looking more and more like my father Everyday. During the last 20 years a lot
has happened. I graduated from Francis Marion and went on to Clemson where I spent two years studying for a master's
degree until I happened across an offer to go work and live in Paris, France. So, I left Greenville and headed to Paris where for
18 months I worked for Euro Disney Because I spoke French, I became very involved in the French Community in Greenville,
especially the French School associated with Michelin. It was through one of my friends that was a teacher at this school that I
met, in 1997, a beautiful young lady from Grenoble, France named Sandrine Simeon We met at the end of May and on
November 15, 1997, I married this beautiful Woman In March of 1998, she became pregnant with our first child and on
December 9th, 1998, Lucas Andre Howle was born. Our first child, I'll never forget that day and the emotions I felt. They ranged
from joy to fear. Of course, he was the most beautiful baby ever born!
As new parents, we were always making sure that the bottles were sterile and with every sneeze, we were worried he was Sick
Every time we took him to the doctor for a check up, we were told that he was progressing as Normal When he was 8 months
old, he took his first voyage over the big lake to France to visit his grandparents and Cousin Sandrine left before me as she had
more vacation days than I did and I joined them about two weeks later. Upon my arrival, we started visiting friends and family. It
was at this time that we realized that there was a problem with Lucas. All the other children Lucas' age were crawling or even
trying to walk while Lucas still had problems with controlling his head movements. It was the worst summer vacation I had ever
had. We spent our time crying and worrying. So upon our return to Greenville, we made appointments with the Doctor First, we
changed doctors after discovering that Lucas had fluid in both ears blocking one ear 100% and the second ear by 80%. He had
tubes put in his ears at 8 months old. We also took him to a developmental pediatrician but we had to wait 6 months before we
could get the appointment. In the mean time, we were given a telephone number to contact a State Sponsored program called
Babynet that provides diagnostic and therapy services for Children They evaluated Lucas and determined that there were some
developmental delays and started him at 11 months old with occupational and physical therapies. When we finally saw the
developmental pediatrician he was diagnosed as having Apraxia. For the next year or so we continued his OT and PT therapies
and even added speech therapy. At a little less than two years old, maybe a little earlier, Lucas gave his mother one of the
biggest shocks of her life when one night while taking a bath, he got mad about something and started banging his head
against the bathtub.
In the mean time, I finally, after 5 years of waiting and being in the process of testing and interviews got a call from BMW telling
me that I was hired. In February of 2000 I left Lowe's after 6 years of service and started building BMW's. Several months later,
Sandrine found out she was expecting our second child. And due to the problems we had with Lucas, we were worried the
entire time she was pregnant. Well, on January 22, 2001, Lucy Camille Howle was born. She was the most beautiful baby ever
born, after her brother of course. The moment her mother looked at her, she knew she was OK.
Lucas had some problems with his little sister when she came home from the hospital. Yes, some of it, well, a lot of it was
jealousy which is typical. As mentioned earlier, Lucas started head banging when he became frustrated. He became hyper
sensitive to certain sounds. We had made the mistake of giving Lucas a pacifier when he was a baby and decided not to do the
same with Lucy. That changed in a hurry. Lucas could not stand the sound of his sister crying and would bang his head on the
floor, walls, coffee table, you name it he banged It So, in went the pacifier for Lucy.
Lucy was appropriately named after her Great Grandmother Lucy Huiett. She was stubborn, hard headed and once she got
something in her head, there was no changing her mind. And my little Lucy is no different. Another words, she is just the sister
Lucas needs! She will not take no for an answer when Lucas needs to do something. She is a tigress when it comes to
protecting Lucas. She understands that Lucas has a problem and she does all she can to help him. She is the only one that
really succeeds in getting Lucas to play socially. Although Lucy is 2 years younger than him, she calls herself Lucas' big sister.
In October of 2002 at age 2 years and 10 months, upon Sandrine's insistence with the Developmental Pediatrician, we had
Lucas tested for autism. The doctor was almost certain it was not autism. Sandrine had been researching over the Internet all
the symptoms that Lucas had. He would not make eye contact; at daycare he played by himself and would not socialize with the
other children. He banged his head sometimes for no reason at all and he was still not talking. The doctor agreed to have the
test done just to make Sandrine feel better. It didn't work.
In testing for autism, there are questions that parents have to answer and the child is observed and given certain things to do
like stack blocks and other age appropriate things. In order to be determined autistic, certain criteria have to be met. Out of 12
criteria, Lucas met 7. He was declared middle of the road to borderline severely autistic.
That is where our journey really began. Autism- after all the research on the topic we seemed to have more questions than
answers. The more answers we got the more questions we Had We were relieved to finally have a name to our sons' problem
but then the reality of what to do, or the lack of knowing what to do set in. Once again, we were told that we could be put on a
waiting list for services from the State for Autism Therapies The list was so long it would be at least a three year wait. Well, we
were not willing to wait for three years. Time is of the essence when it comes to autism. The earlier therapies begin the better.
Three years could be too late. And of course, most of the information concerning autism and therapies for autism we had to look
for on our own. We were given the names of people in a support group which we contacted for information. During this entire
time, Babynet had been paying for all the therapies for Lucas, but once a child turns three, those services end. He did qualify for
a Medicaid program called TEFRA but they only pay for PT, OT and Speech therapies, not the ABA program therapies needed for
autism. And of course, medical insurance would not cover it. We found a lady in Greenville that would coordinate and develop an
ABA program for Lucas at our own expense. At the time, Sandrine was still working and with our two salaries, we could provide
about 10-15 hours a week of Therapies and pay for a shadow to go to school with him. Well, just when things started looking up
and Lucas started making some progress with his therapies, the bottom fell out. Sandrine was laid off from her job. She was
given a severance package that allowed us to keep going for about 6 more months. Â But, what would we do after that? The Lord
does provide in mysterious ways.
Sandrine received a call one day from her mother announcing that a family friend had died of cancer. The death of this dear man
turned into a blessing. When he found out he was dieing of cancer, he told his wife that upon his death, he wanted a fund set up
in his and Lucas name to help pay for Lucas therapies. So, it was at this time in 2002, five thousand miles from Greenville in
France that Nounours, Les Amis de Lucas (Teddy Bear and the friends of Lucas) was created. Enough people, both friends and
family, contributed in France to this fund, that since January of 2003 we have had enough money to pay for 10-15 hours a week
of ABA. In the mean time, I also started growing a small organic garden in my back yard and canning green beans and tomatoes
from local farmers and selling them to friends and coworkers in Greenville. This added anywhere from $500-$1000 a year to
use for his Therapies.
We have seen significant progress with Lucas. We have not been able to give him the 40 hours a week he needed but he has
progressed despite that. His vocabulary increases every day and although he may not be able to have a conversation with you,
he understands everything you say to him, in both English and French. He is extremely smart but can not express it in normal
ways. When he does speak and use words, you may not understand him clearly but for those of us who know Lucas, we know
that "inch I's" are French fries and "I eem" is ice cream, his two favorite foods. We know the results these therapies can have for
an autistic child and we know how important they are. We see it every day with Lucas. There has not been one single goal that
we have set for him in his therapies that he has not accomplished on time or ahead of time with the exception of two, his
language and potty training. Studies have proven that 48% of children with autism that have 40 hours a week of intensive
therapies go on to be main streamed into school without any help. Of those remaining another significant percentage can go on
into regular classes but still need assistance while a small percentage make no progress at all. To this day, we do not know the
cause or causes of autism. Autism can strike in two ways. With Lucas, we knew very early there was a problem but some
children progress normally and start to talk then all of a sudden, they regress. They loose their speech and then seem to just
turn within themselves and shrink from the world around them. There is no cure for autism. Autism is a spectrum of disorders
including the classical "Rain man" autism like in the movie, to lighter forms of autism. Then there is asperser's syndrome and
even Terets syndrome is placed in this group. Only one thing has been proven effective and that is intensive ABA therapies
started as early as possible.
The problem for most, if not all, autistic children is the availability and affordability of these therapies. On average in the USA, 40
hours of intensive therapies a week cost $100,000 a year. Most kids require about three years of intensive therapies at the most.
Every child is different but on average, three years is the norm at 40 hours a Week I work at BMW but I can not afford $100,000 a
year or even the $15,000 a year we pay now. Even the richest of people, except Bill Gates, can afford this. And by the way,
Microsoft pays for ABA therapies for the children of its employees that have autism.
We began to worry what we would do when the money ran out from the above mentioned fund. Would we go into debt? Would
we ask my parents to give up some of their retirement to help along with cashing in some of mine? We have no allusions that
Lucas may need to live with us the rest of his life so where do we turn? Then last year through one of our therapist, we heard
about a lady in Charleston, SC named Lorri Unumb. Lorri is also the mother of an autistic child and is a lawyer by trade. Lorri
wrote a bill for the State to require insurance companies operating in SC to cover therapies for Autism like 12 other States have
already done. It became known to us as Ryan's Law. She organized parents across SC to contact their legislators and attend
committee hearings on this bill. Autism experts were brought in from California and other areas of the country to testify before the
hearings. We even garnered the support of Edwin McCain-Grammy winning singer from Greenville. In spite of the largest crowds
ever seen attending these committee hearings, and all the hard work of the parents like us needing help from our legislators, an
insurance lobbyist convinced the house committee to make an amendment to the bill establishing a pilot program that would
pay for ABA therapies through Medicaid. Only $3 million was given to this fund. It passed and the insurance part was trashed. It
became law. Some hope was restored but only for a short time.
20 years ago when I was singing in the choir, 1 in every 10,000 children was diagnosed with autism. In 2002 when Lucas was
diagnosed it was 1 in every 250. Today the number is at 1 in every 150. Every 20 minutes a child is diagnosed with autism.
According to the SC Department of Disabilities and Special Needs, several thousand children could have qualified for this pilot
program. Only around 400 families applied, me and Lorri included. There is only enough money to help about only 100 children.
When the applications were received by DDSN, they numbered it and when the application deadline was reached, a lottery was
held to determine who would receive the Service Neither Lucas nor Lorri's son Ryan was among the 100 who receive the Help
The remaining children were placed on another waiting list. Lucas is #91. Ryan is # 246. And the money in the therapy fund for
Lucas, it runs out at the end of this school year.
Well, on June 7th, 2007, the SC State Legislature passed Ryan's Law by over riding unanimously the governor's veto from the
night Before All the parents of autistic children in SC, would like to thank each and every one of you who wrote a letter to your
state senator and your state representatives asking them to support and co-sponsor Ryan's Law requiring insurance
companies to pay for ABA therapies. The legislature also added more money into the PDD Waiver program created last year
which will provide ABA therapy for between 500 and 550 children in SC.
We ask for your continued support and prayers and for your continued advocacy for all people with autism in SC and the nation.
Derrick, Sandrine, Lucas and Lucy Howle