William and Ironically Williams Syndrome
Pictures from 2005 to this past Christmas
http://www.youtube.com/watch?v=pbaRO8_4NjY
A you-tube video of Will playing piano
We married in the year 2000 both in our 40"s. A very busy couple with three businesses. We were sure we could not produce children until William arrived unexpectedly in 2002. A total shocking surprise and the best thing that ever happed to me. When we first started making the syrup a past producer told me in Italy they used birch syrup as a fertility treatment. Hmmmm. The doctor said my pregnancy was a one in four million chance . William is a charmer full of love and hugs. We get told I love you and hugged each and everyday at least once. William has some special needs and has come a long way. William ironically has Williams Syndrome. We were told at one time he most likely would have to wear leg braces the rest of his life. He didn't crawl until about age 3 after intense physical therapy. William was a healthy baby but had chronic ear and sinus infections after age 2 a common condition with Williams Syndrome. He had a few surgeries as a little guy the first one to fix a hernia at 8 weeks old. The other were two ear tube surgeries and adenoid's removed. Eating was an issue with him as well as sleeping. It could take up to two hours at each meal to feed him real food when he was a baby and putting weight on was a challenge. Many children with Williams Syndrome are tube fed. It just took us a long time to eat a meal but we did it. Because of that I believe is why he eats just about everything today. He doesn't care too much for hamburger or spaghetti, but his favorite meal is steak and mushrooms. He eats any and all vegetables and fruits. I was told the enamel on his teeth looked good an issue with Williams Syndrome and I believe it to be from his good diet. I have had the school and others tell me that it still takes him a long time to eat. He is the first one to the table and the last one to leave at home. We could never sleep until we were told to give him melatonin and it works most of the time. Sleeping is still an issue and some nights he up all night long. He would sleep for two hours and be up two hours and this would be repeated. He has a slight heart condition common to the syndrome but it's mild and is checked once each year. I brought him to work with me when he was really little. We use to practice walking in his walker across the street at Iditarod Headquarters as they had a paved parking lot. I finally closed my gift shop down because I couldn't help him and run a shop at the same time and I wasn't going to punish either one of us for it. I loved him and helping him and being with him and I wasn't going to apologize to anyone for it. William needed me and I was there for him and I wanted to be. When it was first diagnosed I was devastated knowing my child was permanently injured and there wasn't anything I could do about it. I then realized I could help him be more than his label of Williams Syndrome and he has already started to defy that label in so many ways. He may live on his own someday and that wouldn't surprise me in the least.
GIFT SHOP AT 2150 S. ENDEAVOR STREET
PHYSICAL LOCATION 2230 S. ENDEAVOR STREET
We had lots of summer traffic and tour buses as well.
I kept the cabin rental business going renting them and cleaning them and it does well and is profitable, we just need more cabins to make a decent living. You would never know all of Williams difficulties he has overcome or the stress we endured as a family as you see William run and bounce all over the place not holding still for a single minute with a smile on his face. He still continues therapies and continues to improve each and every year. He is putting together concepts for reading and reads some words already and is grasping the concepts of math. We just discovered his building interests last year in the sugar house. He came to me with this detailed spinning fan built with tree taps and birch tubing. He was in the sugar house with his father. I said, did Dad build that for you, and he just smiled. We discovered last year he could go on the computer and go to you tube all on his own to look at hot air balloons and motors. Plays computer games and moves that mouse around like it's no ones business. He has excellent computer skills for his age. I took him out of school when H1N1 (swine flue) was going around for about four weeks and that was educational and eye opening for me. His homework he was given to bring home during that time was something he did two years prior. So, staying home with me wasn't a total waste of time as we made great discoveries of his abilities. Everyday we would go on the computer and I showed him how to turn the computer on. I explained he had to wait for it to load up. I showed him how I would log on and go to my favorites and get programs. This went on for a few weeks. I would show him the mouse and how to use it. I showed him how to minimize his screen and make things bigger and smaller, he caught on so fast. One day he says mom "go to you tube". I said you do it, and he did. We are proud of him and all that he has accomplished. When I first heard the words "Williams Syndrome" I ran to the internet trying to find any and all information. I found the abilities varied from person to person. I could go over the mild deletion or fading of a chromosome and the sector of the gene and then again what would that mean to you? It didn't mean much to me. His abilities vary just like any normal persons. He never has followed the label of his syndrome in so many ways and he is more than that. Most kids with Williams Syndrome were put into regular classrooms up to 1960's . Williams Syndrome children functioned in regular class's but it was very hard for them and they didn't do too well without those therapies and one on one in math and reading. William is just learning to use a pencil correctly this year after intense therapy and he is in second grade. He has regular class room time and resource time right now. He has a great new teacher and has come so far in just one short year with this new teacher. He was speaking just two to four words last year when transferred to this current school but now has some rather long sentences speaking up to 10 word sentences at a time noted by his teacher after some intense summer school speech therapy. When that therapy stopped he seemed to go back to the two to four words so now we are going for additional speech therapy once more. The muscles in his hands were not developed enough to write letters or numbers but then again he can put parts together. We go for two hours a week to a private therapist just to work on hand strength and movement. He's had miraculous improvement in just a few months. His doctor said the therapist was gifted and I would have to agree. I wish I would have done something sooner in that area. Things we take for granted he couldn't easily do but eventually he does and most always with a happy attitude. He is not always happy as documented in many articles and can have a nasty attitude just like a regular person, which they document to be rare. He is happy most of the time and we all love that about him. He doesn't smile all the time as portrayed in many Williams Syndrome Articles. He is a great actor and loves to fool pretty girls into helping him. He was acting like he couldn't count with a new aid and she was putting her hand on his to count out the objects. His teacher said he caught that and told her he was perfectly able to count them all out all by himself. He is a fantastic actor and I admire his acting ability, but it doesn't work on me all that often and I can get him to start laughing. He is very smart and understands much of what is being said just like any kid his age. He may not communicate verbally all that well but he knows more than he verbally can express. That too is funny as they say Williams Syndrome children have a large vocabulary and language is one of their gifts. Its not a gift yet. I have had many people come up to me and say he is so smart after getting to know him after a few months. That also can present a problem as it does take a few months to find out just what he knows if you don't read past reports and talk to past teachers. Music is a gift too with many Williams Syndrome children, but he's not playing any instruments yet. He loves hard rock too and if a song hits the radio he asks us to turn it up. We haven't noticed that noise sensitivity except to screaming children and he asks to leave the room. He also loves the Manhattan Transfer and old Legendary Vocalists. He always shocks and surprises us with what he knows and is interested in. I feel he will do this his entire life. It's so awesome to see first hand. He is just so much fun.
We now live on site turning the gift shop into a home. We will eventually sell or add more cabins. Were flexible and see benefits in selling or staying. We also don't mind rebuilding in another area but this location has it's perks too being across the street from the Iditarod Trail Headquarters. The cabin business does very well and we enjoy the job and it fits into our lifestyle with William's needs and the syrup business. Its a great way to make a living and to be with our son when he needs us. When he gets sick which he is prone to do I can quickly run and get him at school. He has taken his blanket and toys to the cabins while I get them ready for guests and watches cartoons or looks at a book while I work away.
Kevin continues to grow our syrup business in spite of the many obstacles that have crossed his path knowing its full potential. He has done well. He is one of the hardest workers I have ever met in my life. He has varied talents. He has excellent excavator skills and can lay tile and build a home from all phases of construction. He would like to venture now to other areas of the world introducing our syrup. We are planning and looking for an outside base a second home to start this new chapter.
This next chapter is how he suffered during our Bank Fraud Ordeal
William Suffers Further
My son was admitted to the hospital with Strep Ammonia and could have easily died if it were not for my mothering instinct. The stress was unbearable to deal with, a sick baby and the fraud tying up all our assets, credit cards and cash from the bank fraud. I had to get loans personally in my own name against company equipment because of this fraud to finish jobs and this house specifically and also to live on for the six months of illegal liens. We couldn't touch our assets because of the illegal liens. In addition to that the bank used all our resources as collateral for the house being finished for the couple. The house and the two additional vacant lots. What business can survive when their cash flow is tied up for six months? We couldn't sell the house and we couldn't sell the two lots next to it. We were trapped. When they first started to lien the house is when I found out the two lots and the house had been used as collateral. I thought we could sell the lots to get some quick cash. I never saw that on the original loan paperwork I signed, I just saw the house was being used as collateral and why wouldn't I? The last person to sign the loan papers was my partner who was vacationing in Arizona. The bank sent her the loan papers to sign. I was in shock, how could they do this to us? We had to cancel the other house contracts we had. Cabin Contracts were not fulfilled because we had no money to run the business because of the illegal liens. Still today I am surprised I knew something was wrong with my son considering all the stress I was under. A higher authority was looking out for us and that is the only explanation. Most children just fall over dead from what I've been told as the infection reaches the heart. I just knew something was wrong with him and demanded tests. I was given a bottle of antibiotics at the hospital and I just started crying as I knew something else was wrong and this would be the fourth bottle of antibiotics. There were many times he had a few rounds as his ear infections were chronic ,there was just something I felt wasn't right. The tests came back positive and he was rushed to the Providence Hospital in Anchorage where he spent quite a few days. They called in the center for disease control. I guess this too is a rare occurrence. It's a totally silent killer. All I can say is he didn't feel normal. I wrote to Governor Sarah Palin at that time asking for help. I just admired her so and bought into how she was going to change all the corruption that we have in Alaska. I sent her documents of the fraud and I was called by a frantic aid that worked for her who told me not to send her anything more as it was being forwarded and not to someone I would want. I do have everyone of them I sent her. I saw the paper yesterday on the aid that wrote the book on her and wondered if he was the one that called me concerned about my welfare. At that time Governor Sarah Palin did not have a child with disabilities. I didn't receive help from any communication with her. Shortly after my communication with her we moved as we were going to lose our home as Kevin had to have immediate surgery and by then most of our resources were dissolved from the fraud. We had to Auction off our Company Equipment. We moved three miles away to the gift shop. I asked for an exemption for William to go to his current school and they denied it saying there were no exemptions and no exceptions. William was placed in a class he shouldn't have been in at this new school for our new district area for our address of 2150 S. Endeavor Street Wasilla Alaska. The IEP I had received that spring at the prior school was not followed at this new school. It was made quite clear to me that he was unwanted at this school. I explained to the new school he was to go to regular Kindergarten with an aid. We showed up and he had to go into the teachers classroom for a one on one interview with the teachers. His past teachers were never talked to, which I found insane. We heard arguing about who was or wasn't going to have him in their class, both teachers protesting. They didn't know we could hear them as we left and walked down the hall for a second and came back and were outside waiting for an answer. They came out and told us we were not in either of their classes but across the hall. They had a meeting for a new IEP at this brand new school. I had misplaced my spring IEP during the frantic move but found it latter. You have a new IEP each year before summer school and it has to be done and completed by a certain date each spring for funding, of course being new to this we didn't know any of this. I was told you were only suppose to have a new IEP every three years but that has never been the case in our situation. I don't think it can after all that has happened. The psychiatrist was shocked at the number of IEP's we had in such a short time. His hours on his new IEP in regular class room were almost non existent but that was not the worst of it. I had meetings and tried to correct it. His Spring IEP at his previous school stated he was to go to regular Kindergarten with his own personal aid because he was doing so well at that time, but that never happened and he was placed in a class that had some problems with children that appeared to have had some serious emotional problems. We saw some altercations between the teacher and the student his first day when we dropped him off. We latter saw them on the ground. I saw them myself and my husband saw them as well, so who knows how many times our son saw it or for that fact was involved when he was in the class. That was something he had never witnessed was physical altercations at anytime up to this point. The child was so much bigger than him being twice my sons size. William was frightened and scared and began to regress. He almost completely stopped talking along with other regressed behavior. Kevin went to get him at school and he was hiding in the corner while this was happening. Kevin came home and told me what happened and I went back to the school and had a conversation with the teacher and William never returned to that school. I asked him how the regular Kindergarten class across the hall would react to seeing this on a daily basis and I demanded he answer me. He just fumbled for words. I asked why was it ok for my son to see this everyday. I was actually told by an aid at Disability law that OCS could come and take him away from me if I didn't send him back to school. William was told all summer he did so well he was going to go to regular kindergarten and he knew exactly what we were saying and he was so excited and proud of himself. We did call Disability Law and were helped and he transferred to another school, but the damage had been done and now he needed help to catch up to where he was that prior summer at Pre-Kindergarten. He no longer had that chance to be that regular kid in class, it was taken away from him. The school he was transferred to a second time was not working out and it appeared to me that they were not doing their best to correct what happened to my son and my feelings were professionally validated. I called Disability Law again and they said the case was closed. That emotional pain I endured was nothing compared to what my son went through and once more he started to regress documented by a Psychiatrist and his own progress reports she saw from the school he was transferred from and his past IEP's from prior years and we transferred a second time with her full support. He was even documented after her testing last year to be further behind and not even to the Kindergarten level he had tested at almost a year and half prior. I feel he is in a good situation now doing fine in a new school with a new teacher after that traumatic event in his life. I had to transfer him twice to try and find the right teacher to catch him up. We were not the only family to transfer out of that original school and class and the teacher even left that school and went to teach at another school. Not just any teacher can help a child after that kind of trauma. He did not have the trust he needed to overcome his fear. I will say that the new school I feel has been very good to my son and we feel welcome but we can't help but be on guard as parents after all we have been through. Trust is an issue with our whole entire family. They have been wonderful. I feel he is catching up and we look forward to new tests to see how far he has come in a year. It's very upsetting to be treated like the enemy when your the victim, and that is exactly how many parents are treated when something like this happens to them . I don't really care for Alaska anymore after all the fraud me and my family have endured but I have lived here close to 40 years. I really don't know where I would go because I have been here for so long. As far as I'm concern this all goes back to the original fraud from the illegal liens. If it wasn't for the illegal liens none of this would have happened to my son or us for that fact as we would of never had to move out of our home because we would of had the money and the resources to stay in the house I built with my son's Grandfather and my Father Bill Elgee.