Monday, October 12, 2009

So Here's The Deal

In July, Jack was diagnosed with PDD-NOS, which is more letters than he is old. Pervasive Development Disorder, Not Otherwise Specified. Osi and I thought maybe we were looking at a kid with some OCD tendencies, what we got was a diagnosis that placed us squarely on the Autism Spectrum.

If you read back about a year, I was railing against people who thought Jack needed tested because of the constant fascination with doors. As time wore on, however, and we met with the social worker at Jack's school (yes, his preschool has an in-house LISW, and we are thankful every day for her), it became obvious that the door fascination was just the beginning.

So in July, we had him tested at Nationwide Children's Autism Center here in Columbus. People always ask if it is Asperger's Syndrome. It is not. Not that glamorous, folks. It's just Autism. Not "capital A Autism" as some people refer to it, but again, on the spectrum, which is scary enough.

You never want to hear that your kid is anything less than perfect. So it has taken months for us to come out with this info. We literally told my parents, Osi's sisters and 2 sets of close friends in the first month. We were in denial and after that we were grieving. We didn't tell people because we didn't want people to treat him any differently. But if you're reading this, then you have likely met Jack and you know him. Great kid - a little quirky. You likely love him anyway.

Now I am in the let's kick this thing's ass mode. Which is why I have given notice at work and am devoting myself full time to getting Jack the help he needs. The longer I sat tied to the phones, unable to take or make calls or do any research or any kind, make appointments or get information for 8 hour stretches, the more I felt like the worst mother ever. I knew what my first priority was, and there I sat, not doing a damn thing about it. So, my last day of full time employment is Oct. 23. Can I afford to quit? Sure cannot. Can I afford not to? No way.

Already I am beginning to feel the heaviness lift. I feel ready to fight, rather than the crushing whirlwind I was caught up in just a week ago. With a decision made, I feel we at least have a direction. Is it the right one? Only hindsight will tell us. It is the right decision for us with the information we have right now.

Some people are in denial. Saying that if you ask for a diagnosis - whether or not anything is wrong - they will give you one. That there is nothing wrong with Jack. Others say"my kids misbehave, too." We're all resilient. Jack most of all. Hope you'll support us in our journey - it should be an interesting ride.


Tammy Howard said...

I'm a big fan of staying home with young kids if it is at all financially feasible to do so. Anyone who told you you could have it all, lied.

Jessica said...

As a member of the "they" community, purported to give diagnoses whether there is anything wrong or not, I assure you that nothing gives me greater pleasure than letting someone know that things are just fine. Denial comes in all shapes and sizes. It is sad that some members of the medical community have eroded people's faith in a field that is, essentially, based on helping people. At the same time, it is beyond frustrating when certain non-medical people Google their way into becoming self-appointed experts and have no qualms about sharing their "wisdom". And at the same time, it is beautiful to see people facing a specific disorder use all their resources to actually become experts and benefit the entire community, patients and providers alike.