the ride of your life

Imagine you are on your favorite roller coaster. As you begin the ride you can hear the clink of the car on the track. Your adrenaline builds as you anticipate the climb and then the drop. As you reach the top of the first hill, you lift your hands and scream as you descend. It is scary yet invigorating. There are moments on the ride that scare you to death and then there are those moments that make you smile and scream with excitement. When the ride ends you tend to remember the exhilaration you felt and the scary parts go to the back of your mind as you get in line to ride one more time.

This is our life with Jake.

One moment I am scared, I don’t know how to help my boy. Then the very next second he does something so incredible I want to throw my hands up and scream with excitement. It’s those exhilarating moments, the ones that take my breath away, that keep me going back for more. I don’t focus on the scary part of the ride but more so the exciting thrill and the butterflies in your belly feeling. The scary parts lead to the exciting parts and that is what makes it all worthwhile!

Autism makes our lives a little different. Autism does require us to look at life a little differently. But having an autistic child or being autistic should never be used as an excuse. We do have a different way of life and have to have a different mindset but that is not the definition of autism. It is a neurological disorder. There is no scientific cure, there is no real explanation as to why one child is autistic and another isn’t. There are many different viewpoints on this subject and while I don’t want to start a debate as to who is right or who is wrong, I do know that for my son, there is no specific reason as to why he has this diagnosis.

It seems that there have been a lot of celebrities coming out saying they think they are on the spectrum or that they are on the spectrum. In most cases, I think this is a good thing. It is bringing awareness to autism and allows people to see that while autism can be extremely hard it can also be beautiful.

John, Allie and I work our butts off with Jake. Teaching him right from wrong, working on fine motor skills, social skills….the list is endless. We try not to say he is behaving a certain way because he’s autistic, we don’t EVER want that to be an excuse. Autism does hinder Jake’s processing of information. Autism does explain why he acts a certain way. Jake’s behaviors (at times) are autism and sensory related. I don’t know why he does what he does or why he melts down for what I think is no reason at all. BUT we try feverishly not to blame all of Jake’s actions specifically on autism. Many times it is a very fine, almost invisible, line. But Jake has to learn that no means no, and he can’t melt down or tantrum to get his way. Autism cannot be used as an excuse. Jake does have autism, Jake does have sensory processing disorder. And yes they make his life extremely hard at times but we work on the challenges, we give him the tools he needs so that he won’t need to use his autism as an excuse.

I’ve said it before and I am sure I will say this a million more times; Autism does not define Jake. Jake will learn to define himself for who he is despite having autism.

The boys and two of their cousins; 1996