Solomon’s Story

Our family has known Solomon for about five years, and although he was always a little bit behind his twin brother and our son, Ian, the difference was not great until the boys hit the age of five. I always thought he seemed about on the level of our daughter, who is about a year and a half younger. He talked and played with her and his little sister often. Below, you can read his father’s description of what has happened to Solomon and his family. Click on this link to see a video interview about their family: http://bcove.me/nofdk2rs

You can also click on the link in Eric’s note to see the video about their family and find several articles written by local papers.

Here are Solomon’s dad’s words:

 Solomon’s condition is called Landau-Kleffner Syndrome. We’ve described it as a combination of autism, Alzheimer’s and muscular dystrophy. At its worst, Solomon was losing the ability to walk and was catatonic…..totally unresponsive to anything or anyone around him. Praise God that the physical atrophy stopped. He is now running and riding his bicycle and swinging and bouncing on the trampoline. His gross motor skills are almost totally restored! He still has trouble dressing himself and needs help toileting himself. His fine motor skills are also greatly diminished. He tries to feed himself, but it’s a mess. Cognitively we think he’s around the age of 2. Just in the last year he has begun responding to verbal cues—-“Let’s go to the bath tub”, or “Go get in the red truck” or “Let’s go bounce on the trampoline.” This has been such a blessing to see, and we are so terribly thankful.

We still remember the day that Solomon looked at his mother and recognized her again for the first time and smiled and reached out to her. Just recently, in the last several weeks, Solomon has started taking our hand and leading us to whatever he wants (a juice box in the frig, something to eat, etc). He still hasn’t spoken for 20 months now. On June 17, 2009 he sang the “Waterman’s Song” written by a popular band called Mollasis Creek from the Outerbanks of North Carolina for our friends from college. The chorus of the song says

“Darlin’ don’t go, darlin’ don’t go,….stay here with me, it’s warm by the fire. I’ll need you tomorrow, so darlin’ don’t go.”

After he sang the song, he smiled, hugged “Uncle Rob” and walked away. He hasn’t really spoken again. He recently has begun screaming “Maaaaaama” at his mother when he’s upset, so we’re seeing improvement, but we long for the days of sentences and singing.

Solomon’s treatment is “bombardment therapy”. Three of the top pediatric neurologist in the country said it was his only hope. He gets 35 to 40 hours a week of physical therapy, speech therapy, occupational therapy, and behavioral therapy. This treatment is not experimental. Research studies have clearly established without refutation that 47% of children diagnosed with neurological diseases actually recover and are fully high-functioning in their adult lives. The children who get no therapy are institutionalized after their parents are gone. Insurance companies in Oklahoma have been refusing payment for this therapy based upon the grounds that it is an “educational intervention” and not “medical,” which we believe is obviously a loophole that allows them refuse payment and ultimately drop the family involved. There isn’t a family in the state who has a child with autism or any other related neurological disease who receives any help from insurance companies, and most families are like us – totally uninsured. We’ve met hundreds, if not thousands, of families across the state who are uninsured. Legislation has been submitted in 2009, 2010, and again this year. It has never been approved or even heard.

Solomon’s therapy costs between $40 to $50 an hour, depending on what he’s getting. You can actually see a video of our family at http://www.solomons-song.info/. I also am speaking publicly on this issue to raise awareness. I enjoy getting out and speaking publicly. It helps me feel as if I’m doing something other than sitting around and letting this thing win. We are working on bringing a clinic/school to OKC for these kids so that the many children suffering from this kind of condition can get the help they need.

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