Now that I’ve already confessed to all of you my love for the Jersey Shore, I should probably go ahead and tell you that the Jersey Shore isn’t the only show on MTV that I watch and like. In fact, I watch way too much MTV for someone my age. I am a complete and total Teen Mom addict and I cried during the season finale last week. Like, really cried. Hard. I perked up when they said a new season of Sixteen and Pregnant was starting, though…

The quote that I used for the title of this blog post also came from MTV, more specifically a new show called “World of Jenks”. In this program, documentary film maker, Andrew Jenks, spends a week living with a different person to try to find out what it’s like to really be them. One week it was a rapper another week it was a homeless girl. And during episode two, Andrew Jenks spent a week living with a guy named Chad who is a twenty year old living with autism.

I won’t give you a play by play of the entire program…you could watch it yourself on line, I’m sure and it is worth checking out especially since Chad reminded a LOT of a grown up version of Julian. I will just say that half way through the half hour Chad said, “You can’t make me be”. And it was at that point that I started to cry.

I will strive to never speak of the spectrum in generalized terms. Autism affects each individual, well, individually. Likewise, I will never give out advice or tell another family what to do. I only know what works for us and I respect whatever another parent does to make it through the day ( or night, as the case may be). While there are some characteristic symptoms of autism, there is no blood test for it and no cure. There are literally hundreds of theories as to what causes it and just as many “treatments” for it. I only know what autism means for my family and my son at this point in our lives and I know that the only way we could “handle” it was to accept it, completely and totally.

We are not searching for a cure. In fact, if there was a “cure” I’m not sure that I would give it to Julian. I see autism as part of who he is. A fundamental part, in many ways, and in other ways, an insignificant part of who he is. It’s difficult to separate what is ASD and what is just his personality. When I started working with ASD, instead of against it, things got monumentally better for Julian and our whole family. There are still struggles…absolutely…every day. And sometimes those struggles can be overwhelming as something sets Julian off and we watch while he disappears into a world none of us are a part of. His nursery school teacher last year put it this way… “he’s going someplace and he’s not taking any of us with him.” When this happens I work very, VERY hard to bring him back through the window to me. And I have done whatever I could to get Julian’s family on board in the hopes of making their relationship with him better.

I have done my fair share of reading and researching autism but stopped the search, more or less, when a friend gave me the book “Ten Things Every Child With Autism Wishes You Knew”. I read it through, twice and it quickly became my bible. It was the first time I had been given real, tangible tips and ideas to try and when I put them into place things got so much better for all of us. I photocopied key components of the book and gave them to my family members and Julian’s workers. Just as there are many theories as to what causes autism, there are theories about what to do when a diagnosis is made. This book and it’s author is of the mind set that searching for “why?” is a waste of time because it is here and that time could be better spent working with it, looking at autism as a different ability instead of a disability.

A quick quote from the forward of the book..

“Autism was once thought an ‘incurable disorder’, but that notion is crumbling in the face of knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging aspects as part of their fulfilling and dynamic lives. Some even seek to do away with the notion of ‘cure’. In a widely read New York Times article in December 2004, Jack Thomas, a tenth grader with Asperger’s Syndrome, got the world’s attention by stating: ‘We don’t have a disease so we can’t be cured. This is just the way we are.

“Jack and I are on the same page here: when ‘neuro-typicals’ frame the challenges of autism in neuro-typical terms, they unwittingly close the door to the kind of alternative thinking that has everything to do with how far those with ASD can go.”

---author Ellen Notbaum

This is my mind set, too. As I previously stated, there is no judgment on my part. It is simply what works for us. But I live those words (or try to, at least) every day. I don’t think that Julian has a disease so he can’t be cured. This is simply the way he is.

This doesn’t mean that Julian gets away with everything and anything nor does it mean that I expect my daughters to live as though they are on the spectrum, too. We pick and choose what to accommodate, constantly striving to keep in mind that Julian truly can’t help it in most cases. His older sister, Erica, who is seven explains it this way…

“Julian’s brain’s wires are different than mine. His brain works in a different way. That’s why he can put together puzzles really fast and why he hates WalMart.”

His oldest sister, Olivia, who is nine, wrote this about her brother,

“Julian is different from a lot of little boys. Julian likes fire extinguishers and mouse traps. We need to stop at every fire extinguisher in the stores. When we open up the pantry, Julian says, “Mom! Don’t step on it (the mousetrap)!”. In a store he wants to go over every bump (in the floor). Our Dad has a blue sunfire car and if we are out and we see another one like it, Julian shouts, “Daddy car!”. When it is too loud or too bright or too something, Julian will meltdown by throwing himself back or screaming or hurting himself or me and crying. I think Julian is one awesome brother.”

I would put it this way…

When we accept Julian’s limitations and try our best to work within them, he often exceeds our expectations. We can’t live in a bubble and the rest of the world does not have ASD but if we let him control what he can, it makes it easier for him, and by extension all of us, to live in a neuro-typical world.

In short, we can’t make him be.