My Loves

I find myself feeling quite in love this evening.

Had a pretty good day, and I'm just feeling grateful. Grateful for a husband who loves me and adores me (which I still find myself being surprised by...I mean, really...me?) Grateful for a daughter who is funny and gorgeous and opinionated. Grateful for a son who is delightful and loving and giggly.

I complain far too much considering all that I have to be grateful for.

We've got love, the rest is just details.

The many faces of progress

Alright folks, it's time for some honesty.

Unless you just haven't read anything I've written or haven't talked to me in weeks then you know that there has been some major Progress round here lately. There is a little girl that I have the priveledge of raising that has been ROCKING everyone's world. She is talking and interacting and just so very present in a way that she hasn't been in a long time.

But there is almost always a price for Progress.

First, I have to make an admission. There are certain things that I've held onto about that time before Diva Girl regressed. I have always held a certain amount of pride over anything that is not considered an autistic trait. For example, the fact that she is extremely affectionate is a great joy to me and something that I don't take for granted. But the thing that I've been pretty proud of (as though it had anything to do with me, HA) is that she has never been the kind of kid that needed a schedule. We've always been able to do things spontanously, take her to plenty of places. I always thought "well, at least she's not one of those kids that melts down anytime we go off schedule!" Ahhh. Those were the days.

See, she is becoming one of "those kids". You know, the one that wants things the same, every day. The one that completely freaks out if you give her a response she isn't expecting or take her to a new place. The one that cries through a meal because mommy wasn't sitting in her usual spot at the table. The one that will throw herself screaming on the ground because we didn't button up her coat all the way like we're supposed to.

This change has not been fun. I've fought this for a while, trying desperately to cling to this idea that she is still pretty easygoing. I kept saying "I don't know why she does so well at BCA and is so angry at home!" "I don't know why she has these meltdowns!" "It's just a phase..."

Then one night it clicked. I climbed out of my hole of denial and took a good look at my daughter again. And what I realized is that there is a reason why things have changed. It's called Progress. Yep, it's all because of Progress, believe it or not. See, we were able to go anywhere and do anything because she just didn't care. Sure we could take her out to 4 different places in a row before...but she wasn't really there with us. She was humming, she was singing the Wonderpets theme, she was running back and forth. She cares now! She knows where mommy is supposed to sit and what she eats when we go out and who is with us. And that's a good thing, even if it does make life harder.

But it does make life harder for now. I'm still figuring out how to deal with this new aspect of Progress. How am I going to find time to take pictures of everything and everywhere, print them out, laminate them, and create schedules and social stories? And will that really help? I don't know. But I know we've got to do something to help her know what's coming next and help her deal with change.

I feel tired. And proud. Time to save up for an Ipad....

I didn't do it...

I'm half in disbelief that this progress is real, and the other half of me is praying that it sticks.

My beautiful, smart, amazing little girl is using words. To communicate. She is talking to me, people!! She is telling me "all done" and "you're welcome" and "I'm sorry". Foods are being requested regularly, it's no longer like pulling teeth to get her to tell me what she wants. The change has been gradual, in that it's something we've worked at for months now, but at the same time it seems like she has suddenly just begun to decide to use her words.

Every day her daily notes from BCA are filled with excitement over this new chattiness, and I feel like our "team" is just bursting with pride. This is the breakthrough we've been hoping for, waiting for.

So it came up today (it was bound to come up)...what did I do? What did we change?
The answer is complex and simple at the same. The simple answer is...nothing. no diet changes, no vitamins or supplements, nothing "unlocked" this speech for her. The complex answer is...everything. We changed our lives and work every day with the team at BCA to encourage speech. We've done our best to be consistent and struggled through some tough phases and just kept pushing her.

The truth is, both of those answers are hard for me. I want guarantees. I want to know that if I do A, I will get B. I want to be able to ask other mom's what worked for them, implement it, and see results. But it just doesn't work that way, autism is too tricky for all that predictability. Us moms are left to comparing notes and trying this thing and that thing until we run out of money, and evaluating every word and action in hopes to see results. Then when we do see a difference we wonder if it was the supplements or the therapy or just plain luck.

Personally, we've tried enough things to thoroughly confuse my family memembers. GFCF for months, and she still regressed. Tried a few supplements. Dairy free, swore we saw a difference, then rethought it again. In the name of therapy we've acquired a trampoline, weighted vest, medical brushes, and more. The conclusion that I've come to is that a lot of it just doesn't work for Diva Girl. What we're doing now seems to be doing her a world of good, and that's all I know.

It's unfair. I want to be able to "fix" something. I want to be able to tell other moms "this is what we did and it will work for you!" But our kids are all so different and they respond to their own individual things.

I know that the puzzle piece is a symbol of autism. I'm starting to feel like Diva Girl is a puzzle that came with too many pieces and no picture. I just have to keep trying different combinations, and pray it falls into place, knowing that the end result will be a beautiful picture.
I always have enjoyed a good puzzle.

The Friend Thing

Alright, ready to jump into my crazy mind?

I've been thinking (and we all know how dangerous that can be)about Diva Girl's social future. I mean, right now we aren't worried about her making friends and navigating a social life, but it's going to come up before we know it. So, as I was thinking about it, I wondered if she might be doomed. Because if it's up to ME to show her the way....yikes.

I am not exactly smooth in the world of making and keeping friends. I've got a pretty bad track record in this area. Growing up I was...how would you say it...a nerd. Loserish. I had a few good(ish) friends in elementary school. Middle school was a living nightmare for me. In high school I got a better grip on things, and made some friends. But I admit that I had a little problem with lying and making things up so that people would like me or find me interesting.

I started college with a clean slate, and have tried as much as possible since then to be myself, take it or leave it. Some people loved me, most people didn't care for me much. I was okay with that. And I think, for a while, that I was a pretty decent friend. I was caring, honest (sometimes TOO honest), giving, fun.

Entering the world of autism was rough on me, and even rougher on my friendships. I think I literally forgot how to be a good friend. My life was consumed by trying to figure out what was happening with my kiddo. It was all I could think about, all I could talk about. I was a pretty awful friend, and it didn't surprise me when people stopped hanging out with me. Can't exactly blame them.

But what about now? I think I'm coming out of that phase. But I am still all kinds of messed up when I am around other people! I get so excited about being with other adults sometimes that I just don't shut up. I can't remember what normal people talk about. My passions in life are my kids, cloth diapering, natural birth, breastfeeding, and autism world. So yeah, I'm boring but I talk to much, great combination. Sometimes I come home from hanging out and think "Wow...I really made an idiot of myself tonight. Awesome."

And this past week I realized that I have some pretty amazing and generous friends. Yet I haven't given a birthday gift to anyone in....oh, I can't remember how long. They're lucky if I remember their birthday at all. Boy do I suck.

Friends, it's time that I step up my game. I apologize for my lack of awesomeness over the past year and a half. To the old friends (Amy L, Jessica L, and Dee especially!), thanks for sticking with me and doing the many many things you've done to help my sorry butt out. To the newer friends (Alyse G, Jennie I, Liz U, and many others who I've met on the autism journey!) I can't believe I'm lucky enough to have convinced you that I'm not a complete waste of time!

Can't teach my kids how to have friends if I scare all of mine away. Gonna work on that.

An Unpleasant Anniversary

A year ago today, we made it official. The Diagnosis.
Why is it that I have this date stuck in my head for all eternity? It's not like I didn't know before that day what she had. But there is still something about it.

I remember the day and the feelings that came along with it all too clearly. I was hugely pregnant with Rascal, so to say that I was emotional is an understatement. There was a big conference table, and two sweet women sitting there giving me the results. They had this air about them...as though they knew how horrible it was to hear, and wished they didn't have to say it. They let me cry and handed me tissues. And they told me, in the end, that it wasn't the label that mattered so much. What mattered was that I knew early on and could get her the help she needed. They told me that they saw a lot of potential in Diva Girl, and that they had high hopes for her.

I wonder if they know how much I needed to hear that. I wonder how much of what they said shaped the decisions we've made for Diva Girl.

I remember feeling, that day, like it was the end of the world.

It wasn't.

My daughter talks to me now. She looks me in the eyes. She says "I love you" again! She is proving those ladies right, every day. She is growing before my very eyes, into such an amazing person. I feel so blessed to be the mother of such a spectacular little girl (even on days like today, when I get so tired of telling her to stop licking the window screen that I'm half tempted to throw her out of it).

My daughter has Childhood Disintegrative Disorder. She is so much more than that, or any other label.
She is perfectly imperfect.

Public Service Announcement

Poor little sad neglected blog. Hopefully, now that the shock of my new academic life is wearing off, I will post more often.

It is a classmate that inspired me to start posting again. No, not because she was so brilliant or encouraging, but because I need to warn you all. So listen up, normal people!

It is not ever appropriate to ask the mother of a child on the autism spectrum "so, what's your child gifted at?" Got that? Even if that is what pops into your brain the moment they say autism. Even if EVERY child you met on the spectrum happened to be a whiz at music or art or math. Even if you love the movie Rainman. Not ok.

Why? Because I had no good way to answer that. Because for an instant, I wanted to burst into tears. Because it is as ridiculous of a stereotype as "autistic children don't show affection". Yes, maybe some autistic children can play the piano by ear by her age, or read perfectly. She can't, but I'm not losing any sleep over it. It's not as though I need her to be gifted in some area so as to make up for her delays in other areas. And by asking me that question, this lady put me in the really awkward position of having to say that there is nothing especially grand about my child. I am looking for moments to brag on my child for saying the word "strawberry", and instead I get handed the opportunity to stutter "Ummm...well, she likes music. And letters."

Now, if I'd been a bit more quick witted, here are all the things I could have said that Diva Girl is gifted at:
-bear hugs
-tantrum throwing
-tutu twirling
-dazzling people with her smiles
-eating large amounts of pasta
-nose picking
-lining things up
-picking out fun outfits
-making mommy laugh
-keeping people guessing
-dare-deviling
-high pitched screams
-interpretive dance
-cuteness

I think that is plenty gifted.
Just don't ask though. Because if you wouldn't ask the question of a person with typical children, you probably shouldn't ask me either.

Pickle moments

As much as I try to plan, these moments happen. You know, the moments when Diva Girl completely flips out over something that seems small and inconsequential. I've learned to never hand her a container of crackers without first checking to see that the cracker on top is not broken. I've learned to make sure that I don't put the spoon in the yogurt before setting it on the table. But there are some things beyond my control, and then it is "buh bye sane Diva Girl!" She cries. Throws herself on the floor. It is the end of the world (as we know it)!

These flip outs drive me a little nuts. I want to say "Just eat the cookie and get over it! So what if it's in two parts instead of one?"

But then I try to put myself in her shoes. I heard a comedian once talk about how when a kid loses his ballon, adults tend to brush it off and just tell them they can get another. He told us to think of our wallets floating away, how we would feel if someone told us we could just get another...we would cry like a little kid! So, I thought maybe I could think of how it would feel to get a broken cracker instead of a whole one.

And that's when it hit me....Pickles!

See, I hate pickles. I mean, really, really, HATE pickles. And there have been times that I have been ravenous and ordered a plain burger at a drive thru, and bite into it...only to discover a pickle. I won't lie, I have cried over it. Ugh, a pickle! You can't just tell me to pull it out and keep eating it or anything, because it still tastes like a pickle.

The pickle completely ruins anything it touches. Trust me.

So I thought of how I feel in that moment, when there is a pickle in my burger. And now when Diva Girl freaks out, I just think...she's having a pickle moment.

That I can understand.