The Journey Begins

The next few days were honestly a blur.  I remember crying off and on, feeling sorry for myself, and wondering WHY this happened to me, my son, and my family.  “God has to heal him from this”.  My husband was trying to process this whole thing as much as I was.  I remember telling my family and trying to stay as upbeat and positive as I possibly could. “OK, that’s it, enough crying”…I need to do what I can to help this little boy.  I became a “google junkie”.  Some of the information was great and some was scary.  I chose to focus on the positive articles that I could find.  I went to the bookstore and purchased Jenny McCarthy’s book (Louder Than Words).  It was so refreshing to read a book from someone who was experiencing what I was experiencing.  In the last chapter of the book she makes a profound statement: “For family or friends who are reading this, who don’t have an autistic child…Let me tell you how you can help.  The best thing you can ever give is babysitting time!”  THAT WAS SO UNBELIEVABLY TRUE!  As a couple, we needed a break from our reality.  It consumed every part of our lives.  I didn’t want to be a statistic and divorce based on dealing with this disability (more on this later).  In the midst of my research I came across other celebrities who also had a son diagnosed with autism.  Tisha Campbell-Martin and Holly Robinson-Peete were also parents of kids with autism.  I soon came to realize that their reality wasn’t necessarily my reality.  THEY HAD MONEY!  Clearly their sons would have a better chance of getting better than mine!  They had the opportunity and resources that I didn’t.  I read article after article saying that ABA (applied behavior analysis) was the therapy that autistic children needed.  Well, it came at a price tag of $40,000 a year! Really?! How the heck would I be able to do that…I COULDN’T!

The elementary school began the process of testing MJ.  I had to fill out several pages of questionnaires.  They completed hours of observations and testing on MJ.  The final result stated that “autism was highly likely”.  Based on the ignorance of our previous pediatrician, I switched doctors.  When I went to an appointment I gave them all of the paperwork from the school regarding their findings.  They recommended that I see a developmental pediatrician.  They referred a few names to me.  I could not believe that they did not accept HMO insurance!  These doctors were supposed to be the ones that specialized in autism and there was NO WAY of  MJ being able to see one. It was unbelievably depressing and frustrating.  I heard about a place called “The Marcus Institute” in Atlanta.  I called to see about MJ possibly going there.  I called and was put on a waiting list of over 6 months!!!!!!!!!!!!!!!!!!!!!!  “Are they freaking crazy! They want me to wait 6 months before I get help for my son!”  I honestly don’t know what people do who don’t have a belief in God.  It was at this point that I realized that I needed divine intervention.  “Please God help me to do what I can at home to help MJ.”  As the days, weeks, and months went by my husband became more and more angry at the fact that the son he always wanted had autism.  The dream, desire, and need he had to cultivate a relationship with his son, that he didn’t have with his own father, was quickly fading away…

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4 thoughts on “The Journey Begins

  1. Reblogged this on NickysdayWithAutism and commented:

    This is a continuation of how it all began for us (Part 2).
    It has been ONE YEAR since I started this blog! I can’t believe how fast the time has gone! I wanted to re-post a few of my very first posts so people new to my blog could know how it all began. I want to thank everyone that reads and follows my blog. My hope is that my blog educates and inspires all! My prayer is for kids and adults with autism to be accepted and loved.

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