Friday, August 1, 2014

Metanx, A New Hope?

About 5 months ago we started our son on Metanx.  It's not a drug so of course, insurance won't pay for it.  It is a medical food that requires a prescription.  Metanx contains the active form of folic acid, B6 and B12.  It has been used to help diabetic patients for years and is said to heal the nervous system.  Autism Spectrum Disorders have been defined as a nervous system disorder.  This is not a commercial or advertisement for Metanx.  It is my testimony that this little pill has provided us with a renewed hope for the future.

Within the last 5 months, our son has gone from freaking out when the different foods on his plate touch to eating a regular hamburger with all the trimmings on the bun!  That might not sound like much, but for us that is phenomenal!  He went from wearing the same shirt 4 days a week to wearing lots of different shirts of varying fabrics.  He even wears shirts with tags now!

The biggest change however, has been in his ability to handle being around other people, sounds and smells.  This 4th of July was a special occasion for us, not just because it was a holiday, but because it marked a series of firsts for our son.  For the first time in his 12 years, he was able to watch fireworks up close.  The booming sounds, the smell of smoke, the bright lights didn't freak him out!  We didn't have to leave!  Earlier that same day, he went with us to a carnival where he rode his first big kid ride! 

We are excited by the leaps in technology, research and medication.  We have a renewed hope for our son's future.  I hope that this can help one of you.

Wednesday, September 4, 2013

From No More Melt Downs to Traumatic Tornados

Just about every day I think, "Oh, I will sit down tonight when everyone else is asleep and post to my blog."  Then life happens....and what do you know, it's a year later.  So, I've decided to give this another go.  I hope that if you are struggling or have a child who is struggling on the autism spectrum, that this blog helps you in some small way.

Almost 3 years ago, just after our youngest son was diagnosed with Asperger's Syndrome, we moved from Moore, Oklahoma to Alabama.  We discovered that there are tremendous resources here in Alabama, or at least tremendous compared to what we knew about in Oklahoma.  We (actually, we usually means me) set out to find every therapy possible for our son.  I bought and read every book I could get my hands on.  We tried therapy on horseback, yoga, applied behavior analysis, bio feedback, counseling, and I even put together my own program for sensory therapy.  Life was finally good.  There were no more melt downs!  Our son progressed so rapidly, in April of this year, we thought we might be able to take a break from some of these services.  Then, the bottom dropped out!

The community we once called home, Moore, Oklahoma, was devastated in May by an F6 tornado.  The elementary school our son had once attended, Plaza Towers, had been wiped out.  Lives were lost.  Fortunately, all of our friends were safe.  But that was little consolation for our son, who wore his Plaza Towers shirt for days on end.  I would like to say he took a few steps back after this traumatic event, but that would be an understatement.  He took a nose dive!  We were back where we were two years ago, at best. 

I was devastated!  I honestly can't yet describe the pain or the anxiety I felt for my son.  We had to start over with overcoming his anxiety when it came to crowds, lights, some noises, certain fabrics and clothing, outings and activities, anxiety management and coping skills.  We stopped counting melt downs.

One thing I discovered is that knowledge is everything!  I started re-reading books, ordering books, reading new books and researching.  One of the books I felt helped the most was, "The Out-of-Sync Child" by Carol Stock Kranowitz, M.A.

We began some new therapies and re-started some old ones.  We stopped one medication and added new supplements.  We began the year homeschooling and started adding activities and outings, gradually.  I discovered that everyday is different and offers both challenges and blessings. Some days, like today, there are a few more challenges than others.  I hope to share some of these with you.  And perhaps, I will even come up with some workable strategies.

Monday, August 20, 2012

The Invisible Disability

This morning is our first day of school.  It's a bit different for our family than it is for some of our friends.  First, our son is on the autism spectrum.  This takes a great deal of planning, scheduling special therapeutic activities and medical appointments, and purchasing special curriculum and learning tools as well as getting on a healthy schedule.  I try to begin putting things together in June or July to prevent that stressful last minute rush to get it all done.  Secondly, we homeschool.  Our brilliant son, can't handle the noise of a public school or the distractions other children provide.  The sound of a school bell or the clicking of a clock un-nerves him to the point he cannot concentrate and he is terrified of large groups of people.

Along with so many other children, our son suffers from an invisible disability.  At first glance, he seems perfectly normal.  But I can't begin to tell you the barrage of questions we get hit with.  A few recent ones include: 
  • Why doesn't your son tuck his shirt in? 
  • Why does he have a game boy or nook with him constantly? 
  • Why doesn't he look me in the eye when he speaks to me? 
  • Why doesn't he play outside with the other children? 
  • Don't you realize that homeschooling makes it difficult to socialize him? 
Little do people realize that autism spectrum disorders are disorders of the nervous system.  Some children, like my son, experience difficulty with fabric and the way clothes fit.  This makes tucking in a shirt difficult and often painful.  If he is in a crowd and starts to stress out from being around too many people, having a hand held computer device that he can concentrate on helps.  It distracts him from the crowd  . . . at church, at the grocery store, at any meeting or event where he may be safe, but surrounded by a large group of people. 

Most children I have met on the spectrum have difficulty looking people in the eye.  It makes them feel uncomfortable.  And playing with other children outside often means playing by someone else's rules or having an amount of communication or contact with other children that is often difficult or painful for one on the autism spectrum.  There are several disabilities acts of recent years that provide for and support modifications in activities like sports and cub scouts for children with such disabilities. 

I'm not going to make this about homeschooling as I address the last question I mentioned above.  What I will say is that we view the key to socializing our child with a quality as opposed to quantity approach.  For example, he is not playing on a playground lightly supervised with fifty other children.  Instead he is playing on a playground at a park with one other child, highly supervised by one of his parents and a friend's parent.  He may not be in a classroom with 23 other children.  However, he belongs to a homeschool group where he can enjoy the company of other children for a period of 1 to 3 hours a few times a month while on a field trip or experiencing a hands on learning approach. 

I have a few questions of my own. 
  • Why are people so oblivious to these invisible disabilities? 
  • Where has their compassion gone? 
Our children have a long and difficult road ahead.  Our responsibility is to help them learn to cope as best as possible.  That may not mean that they will ever be like everyone else.  I hope it means that my child will learn to be unique while functioning within society.

What are your hopes for your child?

Lee County Autism Support Group

Mark your calendar! The Lee County Autism Support Group will be hosting their first meeting of the year with a vendor fair on September 13th at 6:30 pm. at Covenant Presbyterian Church on Shelton Mill Road in Auburn. Childcare will be provided by The Learning Tree staff and the AXD sorority. This year we are inviting parents of children with any special need or disability.