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October 8th 2009 05:07
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Leah Benson
minneapolis, Minnesota, UNITED STATES
Joined June 17th 2008
Number of Posts:
16
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0
Karma:
8
- About Me
- I am a 35-year-old mother of an autistic son. "Max" is eight-years-old and is diagnosed with severe autism, developmental delays, ADHD, seizure disorder, and multiple complex medical issues. Before becoming a mother, I completed my Masters Degree in Psychology, but currently I am focusing my energies on a career in writing. I hope this blog offers solid information as well as solace to anyone who loves or works with people on the Autism Spectrum. It can be a very lonely journey... but no one needs to navigate it alone! Welcome to All Things Autism!
Recent Posts Jett Travolta: autistic victim or degraded being? YOU DECIDE!January 5th 2009 12:49
Its strange how sometimes, for one reason or another, a news story can have such a powerfuland personal-- effect on us. Its not always obvious, even to ourselves, what it is that we find so captivating about these stories, but for whatever reason, we process the facts and resulting emotional responses as though the story is our own, as though we experienced it personally.
As most of you already know, this week has focused on one news story in particularthe tragic death of Jett Travolta, the 16-year-old son of John Travolta and Kelly Preston. And since the moment I heard about this story, Ive had this empty, almost painful, feeling in my stomach. I immediately thought of a photo I recently saw of Jett walking barefooted, on the tips of his toes, next to his mother and remember thinking: duh, hes autistic! 
toe-walking is one of the symptoms often associated with autism...
Apparently, I wasnt the only one who questioned his autistic-looking behavior; the internet is filled with articles about Jett Travolta and whether or not he suffered from autism or other developmental problems. Many of these articles focus on the fact that for 16 years, due to his ties to Scientology, John Travolta repeatedly denied that there was anything developmentally or neurologically wrong with his son. Many wonder, with obvious skepticism, why neither John nor his wife attended the premiere of Normal People Scare Me, a documentary about autism produced by Travoltas own brother. And many, like the 2006 article written by investigative journalist Mark Ebner, looked at the role of Scientology, with Ebner concluding that: The Scientology couple [John Travolta and Kelly Preston] cannot even publicly admit that their son is afflicted with a neurological disorder, lest - according to the incontrovertible doctrine of Scientology founder L Ron Hubbard - he be labeled a "degraded being" that brought his affliction onto himself. In light of Jetts tragic death from uncontrolled seizures, this public denial is again showing some obvious cracks. The New York Post, for example, has raised the issue of whether Jett was being treated for his seizures, in light of the "scientology dogma (that) opposes medication for seizures and does not acknowledge the existence of autism, a condition that many believe John Travolta's son suffered." Unfortunately, no matter what the answer, it is too late to change the outcome of Jett Travoltas life. As for me, I cant stop wondering how any parent, for any reason, could be ashamed or embarrassed by their child. Why not just lock them away in an attic or some far-away state hospital? I know I sound harsh but come on people! Wake up! I dont care if its due to religion or class or any other bullshit reason: people with autism are not degraded beings. Jett Travolta deserved to be accepted as he wasand he certainly deserved the services available to any person with special needs. If he was denied those services, the tragedy of his life began long before his recent death.
Surgery in Autistic 8-year-oldNovember 29th 2008 10:21
Last night, as I was getting Max ready for bed, I noticed something strange about his body, or more specifically, the size of his left testicle. It was huge! His right testicle was about the size of a peanut, which is normal for an 8-year-old. But the right one looked more like an elongated egg. So, early this morning, the minute the specialty clinic of Children's Hospital turned on the phones, I called for an appointment. I was told that 2:30 was the earliest appointment available.
We got to the clinic at 2:30 and I took Max back into a room. The doctor came in, said hello to Max, took one look at his enlarged testicle, and told me that he needed an ultrasound-- immediately. Ten minutes later I was trying desperately to keep Max quiet on the ultrasound table as a kind nurse moved a "flashlight" around his swollen and painful testes. This was not an easy job. First of all, Max was scared. His entire body was shaking and he was crying and screaming. "He needs to hold still," the tech repeated.  ultrasound of a hydrocele
I tried explaining the test to him and showed him the pictures appearing on the screen next to his head. But within seconds he would start fighting again. I kneeled beside him and held his chest to the table, whispering about school and video games, promising him there would be no owies. Ten minutes felt like an eternity. Finally, the test was finished and Max had his boxers back on in record time. We made the walk back to the clinic and were taken into a different room. Max was screaming hysterically in anger, having believed he was done with the doctor and without a picture schedule, I had no way to explain it to him. For ten minutes, I held my fingers in my ears and waited nervously for the results. And what were the results, you wonder? Max needs surgery, ASAP. He does not appear to have a tumor, as feared (insert huge sigh of relief here!), though some of the fluid appears a little "chunky" so will be tested during surgery. He has an extremely large hydrocele -- a sac filled with fluid surrounding the testes. 
diagram of a testicular hydrocele
Complicating matters, Max was also born with a birth defect called hypospadias* so he has already endured multiple surgeries on his penis and testicles. These previous surgeries will make the hydrocele surgery less routine. Monday morning we will meet with the urologist to discuss our surgical options and then decide when to do the surgery. It needs to be done quickly, so we're planning for Wednesday or Thursday. But we also have to plan for Max's safety regarding his Primary Immunodeficiency.** Typically this involves scheduling Max's monthly IVIG (a blood transfusion of pure immuneglobulin for protection against infection) while he is hospitalized for the surgery. As anyone who parents or works with an autistic child knows: surgeries are horrific. The combination of spending time in the hospital, the anestestia, the post-op meds, the change in routine, the pain... all result in a huge increase in autistic behaviors. In the past, when Max has undergone surgery, he has been extremely violent and withdrawn for a month or two following. Just in time for Christmas! Not to mention how unfair it is to subject my poor little angel to more pain. He has been so happy this Fall. He's babbling more than ever, he's loving and sweet. And now this. It just isn't fair. ): We will let you know how everything goes. Please keep Max in your prayers and thoughts! * "Hypospadias is a birth defect of the urethra that involves an abnormally placed urinary meatus (opening). Instead of opening at the tip of the glans of the penis, a hypospadic urethra opens anywhere along a line (the urethral groove) running from the tip along the underside (ventral aspect) of the shaft to the junction of the penis and scrotum or perineum." -Wikipedia ** Before Max was two-years-old, he was diagnosed with an immune deficiency called hypogammaglobulinemia. His body does not make immunoglobulin so he needs to get it from other people in the form of a blood transfusion. He has a port-a-cath, which is like a permament IV access, in his chest for these treatments.
A Non-Autistic Halloween!November 9th 2008 07:53
First off, I apologize for not posting anything new for a while. Sometimes I get so wrapped up in life that I find myself procrastinating on everything non-essential. I guess I'm like the nightly news: "if it bleeds, it leads." Now onto other things.
Every year since Max was 5 months old, we have dressed him in some adorable, age-appropriate Halloween costume, only to pull him begrudgingly from house to house. The entire charade served two purposes: first, the participation of a nostalgic childhood ritual and second, costume pictures for his grandparents. So, this year we expected nothing different. But wow we're we wrong! From the first ghost he spied in someone's yard, he literally ate, slept and breathed Halloween. By the time October 31st arrived, he had chosen multple costumes and had filled the house with every imagineable Halloween decoration. We even had a two-foot ghost running across our family room on a zip line so everytime Max clapped or screamed the ghost moved back and forth, making "ghost" noises as it went. Argh
Autism Funding and the Appropriations Bill: Act Now!October 16th 2008 08:33
As we all know, the United States is in an extreme financial crisis. That being said, we are also facing an alarming increase in the number of children being diagnosed with autism. It is my belief that autism is going to drive our social services into poverty if we don't find a way to prevent this disorder from continuing to run rampant.
"Today is a critical time for you to take action on behalf of funding for autism research! Right now, members of the House and Senate are debating the final version of the Fiscal 2009 Defense Appropriations bill. We are seeking $15 million for the Department of Defense (DoD)-funded Autism Spectrum Disorders Research Program (ASDRP) in the Appropriations bill. This critical program will further the field of autism research and help improve treatments and interventions for children with autism.
Can your son count toothpicks?October 1st 2008 07:13
Are county services for developmental disabilities nothing more than urban myth?September 16th 2008 10:08
 Yarg! I'm a pirate!
Here we are, the beginning of another school year. Max just started second grade, but has already hurt numerous students and staff members with his aggression and temper-tantrums. We have an emergency meeting on Wednesday afternoon to work on a "Behavioral Intervention Plan." Apprently Max's new teacher has had to restrain Max multiple times in the past two weeks, however there is nothing in Max's IEP addessing the use of physical restraints
8-year-old boy with autism learning his ABC'SAugust 21st 2008 02:57
Max using his augmented communication.
Here are three videos of my son, Max, learning to say the alphabet. He is practicing how to say his letters, how to spell a few words, and how to say "I love you." By using videos on YouTube, especially videos that include sign language and music, Max is learning new sounds and letters everyday
Can one small pill really change the entire texture of a family living with autism???August 2nd 2008 16:52
It takes a community to raise a child, they say, but sometimes raising a child with disabilities feels more like chronic isolation-- a world completely built on you and your child. Before my son, I belonged to countless "communities." I was a student, a wife, a neighbor, an employee, a student of Tae Kwon Do.... every day I moved through the various social spheres of my life, taking in all the benefits and offerings of belonging. These days, however, my spheres can be counted on one hand and if it weren't for my supportive family, I don't know how I would manage.
Max with his Grandma and Grandpa
Two weeks ago, we made the difficult decision to finally put Max on Risperdal. As I mentioned in earlier posts, it's been a tough summer with Max. He was getting extremely aggressive and hurting people on a daily basis. One minute you would be standing next to him and the next he would be pushing you down the stairs, laughing uncontrollably as you broke through the window at the bottom of the stairway. The worse he hurt you, the more he laughed. Every intervention, no matter how creative, was failing and the medications he was taking were no longer tempering his impulsive, dangerous behaviors. So, we decided to try Risperdal and so far, it is just short of miraculous!
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