Wednesday, April 21, 2010

A and D

Autism. Diabetes.

Yep, we got both here in our family of five. And the last week or so have had me swimming up to my eyeballs in both of them. They are both time consuming in their own right, but put them together into one family and you have yourself a veritable shindig of time-consumption.

I've been thinking about both of them lately. Their differences and their similarities. You see, I thought we had our fill with having autism not-so-politely plop itself down on the couch about 10 years ago and sit for a spell. It's been 10 years since M's diagnosis. 10 years of therapies, schools, diets, more therapies, IEPs, schools, did I mention therapies? Oh yeah, plenty of them. And it's still here, sitting on the couch. Lousy houseguest that it is, it ain't ever gonna leave. We accept it there, sitting, every day. New couch? Still there. I suspect if we moved, it might hop in the moving van. It's ALWAYS here.

Those five stages of grief over a giant change in your life? Yeah, we moved through them pretty quickly around here and we have longed moved into the 'acceptance' category. I love my dear M for who she is, which includes her autism. I know, I know, I should be preaching 'cure' to every one. Well, you won't find that here. Autism is part of who she is, much like her blue eyes and her naturally curly hair who I haven't a clue where she got it from. Removing autism from M would require a brain transplant and last time I remembered, they didn't do them in this part of the country. She is who she is.

Those early days of autism were something. They were e-n-d-l-e-s-s. Daunting. Overflowing with things 'to-do' and places to go and forms to complete and people to see and people to consult and people to learn from. I was exhausted much of the time and didn't enjoy M very much because of it in the early years. It was the realization and the acceptance that led me to the joy that she is my daughter. That took almost 2 years from her diagnosis. It was a journey. Once I let go and accepted, I was able to see the utter amazing child that is my daughter, who happens to have autism.

I thought every family would only get what they could handle, right, isn't that how the saying goes and isn't that what everyone on God's green earth tells every parent of a child with a disability? That God only gives you what you can handle. An autism blogger friend of mine often says that she is 'No Mother Teresa and she wishes God didn't trust her so very much.' I feel the same way. Why not other families? Every one of us seems to ask ourselves the same question - 'Why me? Why us?' I don't know why. Maybe it has made me more kind, more joyful in the everyday moments, more aware, but you know, maybe it wouldn't have had to take autism and diabetes to create that within me. I just don't know. I don't really need to know either. It has just made me more me I suppose.

Then the D hit us. Talk about blindsided. Didn't I just say I had more than I could handle with A? I thought I did. I must not have said it loud enough. And someone wasn't listening. Or the answer was 'I'm not done with you yet!' Or the answer was 'I was just getting started!' Or even better 'You think you're strong now? Just you wait missy!'

And the D is time consuming. I don't mean it as a commentary on my daughter. It is what it is. It is a giant vacuum of time, this care of diabetes. Every. Minute. Every. Day. And it's hard math too! And I really, really, really don't like math. Hey, autism had no math, how come I got a 2nd trial with a lot of math? Again, not listening to me at all I tell ya.

With the A I could take a break. Those days when she was 3 and just diagnosed and consumed with Barney ALL DAY, you know, I could say, you know what? Mommy is gonna read People magazine while you watch Barney for the next 3 hours cause I am done with autism today. We are gonna wake up tomorrow with autism and I can't do it any more today. And I would do that (and not one comment about lousy parenting - anyone - cause you try it some day and let me know how 24/7/365 autism works for you...) I would do that every so often, just be done with it. And then wake up the next morning and take on the world.

The D doesn't let up, does it? I can't forget about it for 3 hours. Heck, 3 minutes would be a relief some days! It's just so constant. I'm trying to fit it all into our lives. It's taking time. It's taking it's toll. It's taking so much energy.

And it's just so much, the A and the D.
For today.
Tomorrow, I take on the world.


Amanda said...

I worked with kids with Autism for 5 years, and I always thought that would be the hardest thing to deal with as a parent - and I'm sure I don't even know the half of it!
I used to cry every time I told a parent I thought their child was autistic. I hated it! And then, once I had my own child, I realized that no matter how much I cried for those parents, it wasn't enough!
I will send prayers your way - I cannot imagine how you do it!

Meri said...

Hell woman, I sat my boys in front of Barney for 3 hours...and Autism doesn't live here! You are mother of the year in my book. It is for sure the hardest thing with diabetes that there is NO FORGETTING ALLOWED. And I always wondered why the guy upstairs thought I needed the D lesson times 3??? I must have some serious math life-lessons to learn while I'm here on earth! ((HUGS))to you!

Heidi / Jack's Pack said...

I so get it. While we don't have autism and diabetes, we do have neurological issues and diabetes, and sometimes, it just feels so unfair.

At one time, we had a serious obsession with Barney in our house. I miss the days of letting Barney "babysit" while I took a break!

Hang in there!

Penny said...

Thanks gals, it means a lot to know that you 'get it' in so many ways. Meri - we must still need lessons in something, right? :0) With 3 kids having T1 I don't know how you do it with such grace and humor hon!
Amanda - thanks for understanding.
Heidi - unfair. Yep, spot on.

Shamae (Ghost written by Loren her hubby) said...

Penny, you are a wonderful mother and I can't imagine anyone tearing you down for anything you said in your post. But, if someone does, give me their name and they can answer to me. These trials are hard! And we just do the best we can each day at a time. I know with Sydney's T1...some days I do more than other days. It's just the way it is. So, know you are doing a wonderful job and we all think you are pretty special!

Jennifer said...

Thanks for this post. These are the thoughts that have been going on in my head lately. I so get the don't I have enought to deal with thing. But it keeps coming.

Jules said...

Putting the reality out there in your blog is as important as being positive and writing about the good stuff. I deal with Type 1 hour in hour out but not the autism. I can only imagine how full on it must be. But know that you are cared for and not alone.

LaLa said...

I'm with Meri there is no A here but Barney for 3 hours sounds awesome! Right now we sometimes watch Cars 3x per day. Nate is obsessed and that is a-ok with me. Sometimes we just need a break!

I love your positive outlook! You are an amazing mom and you are rockin' both D and A.


Wendy said...

Beautiful post!

alyssacr said...

I can only imagine the trouble you might have finding a baby-sitter for a night out (if you ever allow yourself that!). I'm curious--why do you blog about Grace and D versus M and A, since I imagine you have a lot to say about your experiences with both.

Five Bears A-Blogging said...

Hey, Penny. You're not alone with the double-whammy. Our T-Bear (8) has Central Auditory Processing Disorder and was dx with Type 1 a year ago. The stress of auditory overstimulation can mess with his BG almost as much as pizza does :) We're all doing our best, and that's all we can do...

Love your blog. Keep it up, mama! - Mo