Monday, June 04, 2007

South Carolinians Write to Governor About Ryan's Law

Governor Sanford,

My name is Derrick Howle and my son Lucas is autistic. He is my heart and soul and my purpose in life. My love for him is beyond measure and he needs help, your help. He is 8 years old now and thanks to ABA therapy, he has made progress in escaping the world of autism. He has not yet completed that journey. We discovered that Lucas had a problem at 8 months old while we were visiting family in France (my wife is French). Upon our return, we searched for answers to his problem for two more years when finally the diagnosis of autism was given. At 11 month old Lucas started receiving physical and occupational therapies at Kidnetics through Babynet which covered these expenses until he turned 3. Then a program through Medicaid called TEFRA kicked in. But it only covers physical, occupational and speech therapies. When Lucas was diagnosed as autistic at age three, we were told that insurance would not cover ABA therapies. Yet, ABA therapy is the only approved treatment by the US Surgeon General for Autism. So, we looked everywhere and found therapist who were trained for ABA therapy techniques but we had to pay for the cost ourselves. We were told that it would cost over $30,000 a year for 40 hours of therapy. When a friend in France 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 20-25 hours a week of ABA, although 40 hours had been recommended. We ourselves have contributed to this fund by selling organic vegetables from our garden and canned goods we have canned ourselves and selling French baguettes to the French community in Greenville. The money runs out at the end of this year.

Lucas has continued to make progress with these therapies and to stop the therapies now would be devastating. All he has accomplished so far and all he could accomplish with more therapies would be lost. In the last few weeks I have continued to see the progress the therapies he has taken are having on him. At age 8, he has finally learned to drink using a straw. Why is that important? Because Lucas is non-verbal. He has had trouble controlling the muscle in his mouth so being able to control the muscles in his mouth to suck through a straw means he can learn, through his therapies, to control those same muscles for speech. Every small success is so much more than a small success and time is not on the side of autistic children! 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 and he is currently making progress in both.
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 with out the help from these therapies so where do we turn? 20 years ago, 1 in every 10,000 children was diagnosed with autism. In 2002 when Lucas was diagnosed it was 1 in every 250. Last year the number was at 1 in every 166. Today, in a report just released by the CDC in Atlanta of which data from SC was used to determine the prevalence of autism, it is 1 in 150. Every 20 minutes a child is diagnosed with autism. So, I am begging you sign this legislation to help my son reach his full potential without having to wait any longer.

S20 passed this year by the legislature will provide the help not only for my son to reach his full potential and hopefully become a functioning member of society, but will also provide help for the hundreds of other children in SC. S20 is vital to the welfare of many families in SC who would have no other chance at helping their autistic children. Not only is it the moral and ethical thing to do, but it is the fiscally responsible thing to do for the state of SC. About 50% of children who receive at least 40 hours a week of ABA therapy for 3 or more years become mainstreamed students while 40% more make significant progress but require some assistance. The majority of those not receiving therapy become wards of the state at a cost of up to 7 million dollars per person.

My father is a retired minister and we lived in a number of areas in SC so when I found out that this bill was going to be introduced again this year I started contacting family, friends, neighbors and churches across the state asking them for their support and to write their legislators on behalf of Lucas. I know that over 50 people have responded from all across the upstate as well as other areas of SC to their representatives and senators on his behalf. It is amazing how many people one child can touch and we have been truly touched by the response we have had from our neighbors, friends and family and how they have passed on our message.

Governor Sanford, I ask you to sign S20, a.k.a. Ryan's Law. I ask you to sign it not as a tax paying citizen of SC and not as a fellow Republican but as a Father! As a Father, I know you would want to do all you can to help your children succeed in life. This law will help me do that sir! I love my son more than life itself and I see the daily struggle he has to force his real self out into the open. As a father, I am helpless to save my son from this disease called autism but I am not helpless to give him the love he needs to unlock the chains that bind him in his world of autism. Help give me the financial support I need to enable my son to overcome this neurological medical condition called autism. Sir, please help me and all the other parents in SC unlock the chains of autism that bind our children by signing Ryan's law the moment it hits your desk.

With kindest regards,
Derrick Howle


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