Wednesday, September 2, 2009

comfortably numb

I just got back from a whirlwind trip to Chicago. We were there less than 24 hours and went solely for the purpose of meeting with Danny's Occupational Therapist (not sure if, technically speaking, "occupational therapist" should be capitalized, but after all our OT has done for us, I think she deserves my devotion and admiration).

This was the second therapy session with Linda this summer and also the second time she raised concerns about Danny probably having Asperger's. As you might know, I have already been seriously suspecting this for a while, but Linda's observations pretty much cemented it in my mind that Danny has some form of high-functioning autism. We are waiting for our appointment with a developmental pediatrician to see if it is official, but I would be very surprised if the doctor didn't diagnose Danny as being on the Spectrum (I don't capitalize "spectrum" out of reverence here, but more out of awe. You know, as in the kind of awe you might have for something that has the capability of changing your entire world).

So, of course, this has all been uppermost in my mind, because I am the sort who tends to worry and obsess way too much. Interestingly, the feelings I would fully expect to be experiencing--fear, pain, disappointment, a deep sense of injustice, fury--are not there; instead I just feel numb.

I don't think it is the type of numbness you feel when depressed and can't seem to focus or get anything done. On the contrary, I feel galvanized. I have lists of things to get done or things I am in the process of achieving: I have talked with the school social worker about getting Danny into a social skills group, I have made an appointment with a developmental pediatrician, planned a therapy schedule to do with Danny, and started making plans for revamping his diet to help with his development. I will be insisting that Danny receive OT at the school for the visual processing disorder that Linda has discovered. I have ordered books from the library about autism and am registering for an autism symposium in Chicago. And that is just the beginning. I have so much to do.

Still, even as I write this, I feel like I am writing about someone else. Someone else's kid. It doesn't feel personal to me. And I know that is not normal. At least it isn't normal for me. I don't ever deal with any sort of crisis or bad news without feeling it. And often not without wallowing in it, if truth be told.

So, the numbness concerns me a bit. I don't believe it will last. No, I think sooner or later, those feelings will come. I wonder if they will come all at once, if they will last a long time, how I will deal with them. I guess only time will tell.

Until then, the numbness is sort of pleasant. Comfortable, even.


goodfountain said...

Is it possible that it's not numbness but is maybe acceptance?

I know for me, if someone had told me when Charlotte was 2 or 3 that she had Autism, I would have been Capital D Devastated.

Instead, I was told by a Dev Pedi, without first doing any formal evals, that she was NOT autistic.

Then I started blogging, and I read about all these other special needs kids with autism and was like, 'Hmmm, boy, that sounds just like Charlotte." This went on for a long, long time.

Eventually I just grew to see that she does have quite a few characteristics of Autism, and that the label probably does fit.

By then though it was apparent that she was this great, awesome kid who was already changing before my eyes - and so what difference did the label mean. It's not like it will change the the outcome.

That's what is so fearful about the label. Oh, Autism means "X" - and I think it's pretty safe to say that Autism doesn't mean any one thing anymore. Maybe 25-30 years ago it meant "X" - but times have changed and lots more kids with varying degrees are getting Dx'd with it.

All this to say that isn't possible you aren't so much numb to the idea of being on the Spectrum as much, "ho-hum"? I mean - does it change one single thing about the kid you live with every day?

Not really. Maybe the wallowing and/or sadness won't ever show up because nothing has really changed. Not Danny today, and not the Danny he's growing up into.

At least- that's how I see things.

Amy Jane said...

I LOVE goodfountain's perspective, and agree with it wholeheartedly! After all, Danny IS the same kid, label or not, and the label of autism does not change Danny one bit. I also think that some of your "numbness" comes from the fact that this wasn't a surprise diagnosis to you. You have suspected it for a long time, and just received confirmation, basically. It's not like you were walking down the street, thinking your kid was perfectly "normal," and then someone told you, out of the clear blue sky, that he's autistic. So, I think you've probably already dealt with a lot of the accompanying emotions, whether you realize it or not. BTW, I'm so in awe of your list of preparations and plans! Patty, you're the most amazing, devoted mom I know. I've said it before and I'll say it again: your kids are all going to turn out great!

Shellie said...

Those two above me said it great. Maybe you have gradually been dealing with this and really, once you know what's going on, you move on to doing something about it, which is what you are doing. I'm sure more feelings will surface over time, but maybe this numbness is the get busy doing something about this phase and you just can't bother feeling more yet. Being 'on the spectrum" may be a big thing, looking at all the challenges ahead, and can seem overwhelming, but like the others mentioned, it also doesn't change the wonderful things about Danny or all the things you will continue to learn together with him through the years. Everyone for one reason or another has a difficult journey, but it's also a wonderful one.

a Tonggu Momma said...

And this is why I love Good Fountain... hugs, friend.

Sarah said...

The diagnosis is good for one thing---services, period. Don't let autism define Danny, let Danny define autism. Your numbness will change to anger, then sadness---it is a process that you will go through. But you will wake up one day and it will be a Tuesday and you will find yourself doing what you normally do---and the autism will not be at the forefront because it will be your Tuesday....

I think it is wonderful that you are submerging yourself in education and workshops. But don't lose yourself, Patty. Don't lose yourself to combating autism---embrace it, learn from it, and I guarantee you, Danny will make you a better person for it---I promise.

susan said...

Our minds are funny like that- They only allow us to take in what we can handle.

Kristin said...

When I found out about my son I felt like someone kicked me in the gut really hard.