"the epic" thank you!

as the day goes.

Today she danced in the kitchen with her sisters. They chased each other around the room in circles and giggled and laughed. Maddy said, "that looks like fun!" when her sisters first started the game.

Today she was just Maddy.

And while she had the first autistic tantrum at bedtime that she has had in a very long time, it does not overshadow the day.

Today she was just sweet giggly Maddy.

She no longer runs with her arms out in front of her. She runs like any other two year old girl. She ran from her room to the living room and back with Mae-Mae, Mama, and Daddy as we all played horsey.

Today she was happy Maddy.

She sat at the supper table and dabbled with her food like any other two year old girl. She ate. She didn't eat. She sang "bumble bee" with a cheerful tone to her voice. She ate. She didn't eat. She spilled her cup of milk on her lap.

Today she was our Maddy.

the low blow.

It's been a bit of a rough week. I'm just gonna say it.

And while I do not want to spend much time with negativity, especially on here. I do need to address something.

I touched on it briefly in the last post, well, the post before my Christmas letter "dilemma" (which did get written this year and hopefully it sounded nice and thankful and not depressing nor fake).

How do you know that what your doing is actually working?

There it is, folks. There it is. The question that has been resurfacing.

And it should be clear as day. It should be SO obvious that the question should have never left any one's mouth. But objectively speaking, someone walking into our world after not knowing Maddy for the last 2.5  years, probably does have a valid point............if they didn't believe a word that came out of my mouth about how she was.

This is what is so infuriating for me. I do not know a single parent that wishes their child had a disorder. None. No one sits around wishing and hoping for their child to have a special need so they can gain attention. If they do, they should be committed. But I can honestly say that ALL sane and good-intentioned parents DO NOT.

I didn't make up some story about how Maddy was before all of the intervention. I don't feel the need to seek attention this way. I would love to be doing a BILLION other things with my life. Really. I would. I would love to spend a fraction of the amount of time that I do on Maddy, with my other 2 kids. I would love to be able to go places and not worry that Maddy will get overstimulated. I would love to be able to brush Maddy's hair and know that when she tells me "OW, Mommy." it's because it's snarled and not because she cannot stand the sensory feeling of getting her hair combed.

How do I know it's actually working?!

Look.at.her.

Can she answer to her name? Can she make eye contact with you? Can she sit in a room with a bunch of other 2 year olds and make herself undisguisable?

The answer is yes. To all of those questions.

I'm sorry...i gotta let this out. It's been boiling in me for too long. I am trying very hard not to get overly defensive when it comes to Maddy and my role as Team Leader. I'm Mom first and I'm sure that does take alot of objectivity out of it. But I'm not doing this alone. I have 7 other people to make sure that I'm keeping things on track.

I think Catherine Maurice says it best here:

On the one hand, I understood some of this resistance. Anne-Marie was young, we had caught her condition very early, and we seemed to be already turning it around. It was hard for anyone who didn't live with her to believe that there was anything wrong with a two-year-old child who was now combining some words. They had no immediate way of knowing what her history had been, or how far from normal still was her overall social and linguistic development. How could they be expected to know about frequency of spontaneous eye contact, inflexibility of language, paucity of social overtures to people? They judged by what they saw, and to a casual observer she now looked perfectly normal. They thought it helpful to diminish and downplay whatever problem I was rattling on about.

On the other hand, their attitude inspired a certain defensive paranoia in me. Did they think I had made it all up? Yes, life is very boring on the housewife-mommy track. Maybe I'll con a few neurologists and psychiatrists and various other professionals into diagnosing my daughter as autistic. Create a little excitement around here.

Of course, the incredulity I was encountering at this point was nothing compared to the outright skepticism we found as Anne-Marie got better and better. It is impossible. This cannot be. This child was misdiagnosed. Autistic children do not recover.  (Maurice, Let Me Hear Your Voice, 1993)

Completely. Totally. How I feel.

17 years later. 17 years. 17 years?! Are you kidding me? In 17 years we have not progressed out of this? I'm still fighting the same battle that she fought....17 years later.

For arguments sake, are we still thinking the same things about cancer treatment as we did 17 years ago? I'm curious to know. (and really I don't mean to attack cancer. It's a horrible disease. Horrible. So is autism.)

I wish I could scream and shout at the top of my lungs and know that everyone was listening. Why does this need to be a battle? Why can't people just accept the awesomeness of what is happening? Why do they feel the need to argue?

Don't get me wrong, I have ALOT of people who are thrilled, amazed, excited, astonished at how Maddy is doing. I do. And I know not everyone is going to be on the same page, sentence, paragraph, page, chapter, book....as I am. I get that. I also understand that not every child will be as fortunate.

But don't tear down the ones that are.

How do I know that what we're doing is working?

Because I can look at my daughter, she can look at me, I can stroke her hair at bedtime and sing her a lullaby and when I finish, she can look into my eyes, say "nigh-nigh, Mama. Love you."

That's how.

'twas the year 2010.

So we arrived here. At a time that I have semi dreaded for quite awhile.

Christmas Letter time.

Usually I love to sit down and write the Christmas letter. It's fun for me to reminisce on the past year and everything that has happened. Usually, I find myself trying to edit down all the fun things I have to share with family and friends. I don't like to make it longer than a page. I think a page of boasting is enough. More than enough.

But this year....

While we have had some great results in the last few weeks, it doesn't totally overshadow all that has happened in the last year. And there isn't really a way to candy coat having a child diagnosed with Autism.

And I can't really write this:

Greetings! I hope you all have had a wonderful year....because ours sucked.

nor can I write this:

So our youngest twin was diagnosed with Autism in July BUT she's doing so awesome right now that it's really no big deal.

nor would it be right to not mention it at all.

Our past year has been boring. Nothing new to report. The kids are a year older. The end.

nor can I make the entire letter some sap story.

Poor us...boohoohoo.

So here I am. I could totally skip the whole Christmas letter ordeal but then really that would be the same as not mentioning it. I'm sure I'll come up with something. I always do. But it makes it all that much harder. Not that most people don't already know our story...but still.

It seems kinda silly to be so anxious about something as trivial as a Christmas letter, but that's just it, it is the little things that pile up to make everything overwhelming.

In some odd way, thankfully, our Christmas cards are in the middle of some shipping nightmare and after 2 weeks, are still not here. So at least I'm able to put off having to write this thing. Too bad that I know I have to do it.

I'll do my best to be jolly. We do have alot to be thankful for. Really. We do.