Take a step into my world...

I was recently talking to a co-worker about the signs of autism.  She has a family member who knows someone who thinks their child may be autistic.  As I was talking to her about my personal experiences with autism, I went through a bittersweet stroll down memory lane.  Sure, it's been over seven years since my own child was diagnosed with autism, but talking to her brought forth a lot of conflicted emotions about our journey.  Most of you who are reading this know that my son, Josh, is autistic.  But there may be a time when a "stranger" reads this blog.  Maybe they stumble upon it accidentally, or maybe they search this site and my blog comes up.  Nonetheless, if you are reading this blog, then more than likely you know someone who has autism.  Autism Awareness Month is each April, but I try to promote autism awareness EVERY month.  Because autism is a part of my life each and every day.

Joshua was born on December 18, 2001.  He was a full-term infant, weighing seven pounds and a couple ounces.  When he was a baby, he hit all of his milestones, but just barely on time.  I remember that even as a small infant, he would spend so much time fixated on the ceiling fan, watching it go around and around.  At the time, I thought nothing of this.  I had a daughter who was four, "neurotypical" and "normal"...so this behavior wasn't a red flag for me.  Looking back at it, maybe it was something different.  I'm not really sure.  As Josh grew, everything was on track for him.  He was focusing and following objects, then walking and talking, although his vocabulary was limited.  Again, I thought that he was just a "typical" boy who wasn't saying much because we were talking for him.  Now I wonder if this was a sign too.  When Josh was fifteen months old, he received his routine MMR vaccine.  He ran an extremely high fever that night of 103 degrees.  Inconsolable crying.  Broke out in a huge splotchy rash.  When I spoke to the on-call pediatrician that night, I was reassured that he would be fine.  I was given instructions to medicate Josh with Tylenol and Ibuprofen and call back if there were any other problem.  I can remember very clearly that within a few days of Josh receiving his vaccine, that things really began to change with him.  Loss of eye contact.  Speech--gone.  Meltdowns...sometimes hours on end.  Relentless meltdowns. He wouldn't respond to his name being called or any other verbal cues.  I even wondered if something was wrong with his hearing.  (There isn't.)  It was like someone flipped a switch.  Like someone had traded my sweet little boy for someone I didn't even know.  I would like to say right now before I get anyone upset that I am NOT opposed to vaccines.  I think they serve a very important purpose in the lives of our children.  If I had another child at this point, I would still get them vaccinated.  I would just have them spread out a little differently.  (Personally, I think that we give way too many vaccines way too fast.)  That is just my opinion.  Nonetheless, I do believe that it wasn't completely coincidental that my son started really exhibiting signs of autism so quickly after his vaccine.  Call me crazy, (won't be the first time) but I believe that something happened in Josh's brain when he received the vaccine.  It was almost like someone flipped a switch in his little brain.  I do believe that Josh had autistic traits from birth.  I also believe that the MMR vaccine did something, almost like a catalyst, that brought more signs and symptoms to the surface.

Josh was diagnosed formally with autism and developmental delay before his third birthday.  This was an extremely emotionally charged day for me.  The psychologist sat down with me and explained her findings.  She went on to say that Josh had an IQ of 33.  (How do you accurately do an IQ to a non-verbal toddler?) She told me that he would never talk, never do anything independently and that there may come a time when he had to be institutionalized.  There was absolutely no hope as far as she saw it.  I have NEVER wanted to punch someone in the face as much as I wanted to punch her that day.  I remember saying, "are you this negative to everyone?  Don't you have faith???"  I honestly don't know how I made it home safely with Josh that day.  To say that I was in an emotional rage would be an understatement.  All I wanted to do was hug him tight and protect him from everyone and everything.

What a journey it has been for the past seven years.  Josh has had so many obstacles to overcome, and yet he continues to meet them head on...and with a smile.  When Josh was first diagnoses, I grieved.  I really did. I tell people all the time that the grief process is a strange thing.  You don't just grieve when someone dies, you see.  You can grieve over a lot of life situations, such as the end of a relationship or the end of a job....you get my drift.  And for me, I grieved the loss of a son who would never be cookie cutter "normal".  I grieved that he would never do typical little boy stuff, like being on the soccer team or socializing with his peers in a typical way.  It took me a long time to accept the fact that we were embarking on a new journey.  A journey that I didn't know if I was fully prepared.  At first, I said, "why me, God?  Why is this happening?" Now I just thank Him.  Acceptance is the key here.  I learned a long time ago that I could never be a good mom to Josh if I couldn't accept him for the little boy he is.  And I'm not going to sugar coat it....it was hard, especially in the beginning.  I went through a lot of negative emotions.  I suppose that is normal.  I am human, after all.  But somewhere in all of this I began to see all of the positives and the negatives were cast to the side.

When Josh started kindergarten, he had a vocabulary of four, maybe five words.  He would say "mom", "hey", "ball", "dog" and occasionally "water" if he was in the mood.  Five words.  I look back on that and smile.  Wow!  Look at my son now in comparison.  It's proof that with early intervention and lots of therapy, my child HAS learned.  He IS teachable.  He has proven that psychologist WRONG.  Since starting elementary school, Josh has continued to amaze me and his teachers.  When I once completely dreaded an IEP evaluation, now I meet it head on with a smile.  Because I know what Josh is capable of.  He may be autistic, but apparently he's a people pleaser like his mom.  He really is driven to learn and loves to make his teachers and therapists happy.  When Josh was finally learning to talk, he did something called echolalia.  Basically, everything I would say to him, he would repeat.  I've noticed through the years that each time he does this more frequently, he will then begin to start saying more things.  It took me YEARS to hear, "I love you".  It is truly music to my ears.  When Josh walks up to me, gives me a big hug, and says, "I wuff you, mah"...it is absolutely the best thing ever.  I know how hard he has worked to get where he is.

Josh still has obstacles.  Things are easier now.  No more meltdowns or weird and interrupted sleep patterns. (Those were definitely tough times for us.)  Josh is very routine oriented, but goes with the flow if that routine gets disrupted.  He's patient and kind and very smart.  The kid can work my smart phone faster and more efficiently than I.  He's a techie and an electronic whiz.  He loves playing video games and does things with them that I have hard time even comprehending.  Yet he can't tie his shoes or write a sentence by hand.  It's weird how austim works.  Even though he spells words correctly and makes a 100 on his spelling test week after week using an adaptive keyboard, he's unable to write the actual words down.  And you know what?  It's awesome.  He doesn't have to write.  Or tie his shoe.  He's a perfect little person who needs some help.  And who doesn't from time to time?

When I tell everyone that Josh has taught me far more than I could ever teach him, I really believe that.  Josh has taught me unconditional love.  Josh doesn't see the bad in anyone.  He gives the best hugs.  His smile and laugh melts my heart.  He has taught me that it's okay to be different.  And he has taught me that God is with me on our journey each step of the way.  Today, instead of saying, "God...why me?"  I just thank Him.  I know that there is a reason that I was chosen to be Josh's mom.  I need Josh in my life even more than he needs me in his.  Josh has shown me that his mind is a beautiful thing.  And I'm very proud to say today that I'm a parent to a child with autism.  The road has been rocky, but I wouldn't change our path together for a thing.