Beginning the Adventure of a Lifetime

My son, Jacob, is one of the most extraordinary people you will ever meet.  He's brilliant, he's handsome, and he's autistic.  Not one of these attributes define him, yet they all combine making him who he is.  I started this blog as a way to explain some of our life to others and honestly, to give myself an outlet.

Jacob is a very high functioning spectrum child. For those of you who aren't familiar, autism is a spectrum disorder. This means there's no blood test, no confirmation and even two different doctors can sometimes disagree on diagnosis. But, there is a set of accepted characteristics those on the spectrum display.  The difficulty comes in measuring where a child falls on the spectrum.  I too have autistic characteristics. But because these features of my personality don't negatively impact my life, and I'm capable of controlling them, I wouldn't fall on the spectrum of autism.  Meanwhile, children are assigned the diagnosis if their characteristics are severe enough they have difficulty functioning in normal settings.  This means a child can be non-verbal and have the same diagnosis as a child who has difficulty socializing or making eye contact.

All parents will tell you early intervention is key.  We say this because it is drilled into our heads from the moment we hear the words, "we believe your child has autism."  As a parent, you are then informed of the myriad of therapies that would help your child cope with the symptoms of the disorder they display.  Our first clue Jacob had a problem was when he was 18 months old.  He had been getting more and more aggressive with tantrums.  He started banging his head when something didn't go his way or bothered him.  NOTHING would soothe him.  My mom told me to let him bang his head, he'd tire of it and realize it hurt. With nothing else working, I followed my mom's advice.  That night Jacob ended up in the emergency room with a broken open eye socket and chipped teeth.  He literally beat his head so hard against a wall he broke his own teeth.  We went through six nannies in 3 weeks; one recommended we have him seen by a priest.  I'm ashamed to say it took another year before I started listening to those around me who suggested there may be a bigger problem than a temper.  I'll never forget the day I accepted it.

When the words came out the doctor's mouth: autism spectrum disorder, I cried. I'm sure any mom can understand.  You have these big dream for your children and those words make you question everything.  For those of you out there who have children on the spectrum or suspect, cry your tears, but know this: this is not a death sentence.  The doctors are right.  Early intervention IS key.  Jacob is now so high functioning, many would never guess he is on the spectrum until he has an issue.  Most describe him as a little "off", but would never guess what we've gone through and what we've seen.

We've worked hard to get Jacob to the point he is.  He is integrated into a normal kindergarten.  He works side by side with his peers with some small accommodations made by his teacher.  His language skill is one of the most advanced his teacher has ever seen, with an incredibly extensive vocabulary, although his speech skill needs some work as his brain moves faster than his lips can.  His brain works in ways that still amaze me.  He asks questions as an adult I've never thought to ask.  We are lucky.  Most spectrum children see the world in ways our minds can't configure.  Jacob is verbal enough to let me catch a glimpse of that.

My plan is through this blog to share our lives with you.  There's only one thing I ask in return. If you read or follow this blog, please only leave positive feedback and comments.  The reality is sometimes, people are unkind without meaning to be.  Parenting a special needs child is hard.  It's exhausting and sometimes, it's heartbreaking.  While Jacob is high functioning and you may know children with more severe cases, that doesn't make our journey any less significant or sometimes difficult.  The last thing a special needs parent needs is to be told they should have handled something differently or the worst, "that's no big deal".  What I need from you: friends, readers, family, is to simply support us.  There's no answer for exactly how to handle any situation. I do the best I can day by day and HOPE I'm making the right decision.  Sharing our life in its entirety will be hard. I tend to focus on what's funny and lighthearted about his disorder.  BUT, I'm trusting, by seeing the big picture of our journey, it will help me cope at the same time I hope educate others on what it's like to parent a spectrum child.

Here's to our adventure!

#aspergersgradek