May Day! May Day!

1 05 2010

(Did you know any time you write something on May first–email, blog posts, journal entries–you have to title it ‘May Day! May Day!’? Well, you do. It’s a rule.)

In honor of Autism Awareness Month which we just finished (we also just finished Mathematics Awareness Month, but that has no bearing on this post), I thought I’d write a few of my thoughts about autism, seeing how I’m aware of it every day.

Here are my thoughts (taken from a previous post, written last August) upon learning Colby’s diagnosis of autism:

He’s 31 months old and doesn’t say any words at all. He babbles some (more frequently now), and occasionally gets out a “Da!” or “Mum-mum-mum”, but most often we rely on a tug-Mom’s-hand-until-we’re-in-the-general-area approach. Luckily I’m a pretty good guesser.

We suspected autism early on, but there were lots of things to try first: hearing tests, walking (some kids start talking once they aren’t focused so intently on walking), triadic eye gaze, etc. About last November, I got to the point where I realized this child, the son who has my name along with a gigantic portion of my heart, had a disability.

I grieved.

There were so many expectations I had to let go of, and I hadn’t even realized they were there: graduation from high school, college, mission, marriage, grandkids.

It hurt.

I hurt for him when I thought of so many experiences I’ve had and enjoyed that he might not have. And I hurt for me, wondering if he’d ever speak to me and be able to tell me he loved me.

It took some time, but I realized that Colby is the way he is for a reason: for him, yes, but probably more so for our family. We need him. He might go on to do all those things and more, but he might not. We will love him (love him, love him!) no matter what.

At the beginning of July (talk about waiting lists–autism evaluation is CRAZY), Colby was evaluated and given the diagnosis of Autism Spectrum Disorder. Even though I was expecting it, I was still surprised at the blow it gave me. There was still a tiny little flame of hope in my heart, one I didn’t even know about, that was holding out for, “Guess what–he doesn’t have enough vitamin A. Give him these drops and he should be talking in no time!”

However, the shock was brief. I had already grieved the child I thought I had, and was embracing the one I was blessed with.

He truly is a blessing.

If you could hear his laughter, you would know why.

Colby is joy personified.

And the world needs more of that.

I am beginning the daunting task of coordinating various therapy efforts. I’m not good at things like this, appointments and whatnot. It’s scary to me. I also don’t understand the school system at all for special needs kids, and what I need to do to ensure he gets all the services he should. I need to be his advocate, but I’m not good at advocating. I’m good at accommodating, but that’s not the same thing. I’ve been praying for a backbone, for the courage to be the squeaky wheel. Because you know what they say about squeaky wheels . . .

They’re the ones that get the grease.

(squeak, squeak)

And who deserves grease more than this munchkin?

nap

(This picture makes me want to hug him until his eyeballs pop out.)

That was written at the beginning of the autism journey for me and my family. I have read, I have studied, I have watched, and I have learned. Here is a picture of Colby today:

Playing with my iTouch. He loves that thing, and can be seen (oh, so often) kicking back with it, miraculously finding Jane Monheit in my music or spelling out the names of animals.

Like this:

Seriously. Legs crossed and everything.

Last September, Colby and I dove in to several different therapies: play group, occupational therapy, and occasional physical therapy. He had something every week day except Friday. I was with him through everything, and it was fun seeing his progress.

In January, after he turned three, he was no longer part of the county’s early intervention program. Instead, he was grafted into the school district special education program, early childhood education. Again, he had class four days a week, but the daily time was increased from two hours to a full school day.

A full school day! At three years old!

That went against every grain I had. For my other kids, I had done Joy School (and loved it) and always felt like maybe kindergarten was optional. (Technically, it is.) Kids are supposed to be home! Their mothers should be with them! Their mothers can teach them everything they need to know!

Putting Colby on that bus (a BUS! He’s only THREE!) was a gigantic leap of faith for me.

Sometimes, though, those things you take on faith end up reaping the greatest rewards.

Entering school, Colby had maybe five words/word approximations. He now knows over 30 and adds to his vocabulary almost every day (he said ‘Cheese’ two days ago).

He is able to sit through Primary with his Sunbeam class (this is all hear-say, since I’m not in there anymore)–which is tough for any three-year-old.

He can sing the alphabet song.

He can trace the letters of his name with his finger.

He knows the entire alphabet by sight.

He knows animal sounds and names.

This might not sound like much, I realize. But when you talk and talk to a child who is unresponsive for literally years, and then you ask him, “What does a cow say?” and he “Moo”s back, well, let me just tell you I could do that all day.

I am so grateful for his wonderful teachers and all the time they spend teaching him the things I couldn’t. I’m so grateful for a country that believes in educating all of its people, and for a state who has made this program, and others like it, possible. With the recession and budget deficits, a lot of programs are being cut.

I’m so grateful this one wasn’t.

We’re taking this journey together, baby steps, with lots of help from other people and from God. I can honestly say I wouldn’t have it any other way.

 


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12 responses

1 05 2010
moniquel319

Well way to make a person CRY! I’m grateful for your blessings. He is precious and so are you.

1 05 2010
Ina

What a great education program! (even if it is hard to put him on a bus!) And the cutest toes ever!

1 05 2010
Anonymous

What a journey! I am so glad you became a squeaky wheel and can see the amazing progress that came from it. You have a great perspective about mothering and enjoying your sweet, joyful, blessing of a child. I want to reach in that picture and hug him too and I’m not even the mama. You’re awesome Wanda. Love ya.

1 05 2010
Lori

Wendy,

You are truly an inspiration to all in your beautiful posts!!! I just hope I can be half the mother you are to your children!

1 05 2010
Tami

I Love Him!!! His progress is amazing and you are the best mom I know!

1 05 2010
Camber

You are an inspiration! We just love, love, love you and of course the little red head! I sent you an email a while back. I am guessing you did not get it?

2 05 2010
Dad

Mom said it best when she told me “You have an incredible daughter, do you know that?” I agreed wholeheartedly. We love you –Dad

2 05 2010
Candice

I love you both, too. I have a 36 month old daughter, and the things that you listed sounded right on with development. I am seriously impressed. Colby cannot fail with you as his Mom. That is a blessed boy.

2 05 2010
Kathleen

You are incredible!
And you made me cry again. (not that you need to apologize:)
We love you and all your sweet kiddos, especially the red head!

4 05 2010
Mandy

I am so happy to hear that update. What a sweet boy you’ve got. Plus, your feet are really cute.

5 05 2010
Sandi

Mike and I both noticed that Colby had made some major improvements in regards to interactions when we saw you guys over the holidays. I am so glad to hear about his progress, he is such a cutie! Can’t wait to see you guys this weekend!

26 06 2010
Rae

First, I can’t believe that I never commented on this post and how beautiful it was- probably because I teared up too much and hard to regain my vision.

Second- Thanks for the comment flurry! You totally made my morning.

Third- I saw today, Jane Monheit is performing in Tacoma in April and thought of you. http://www.broadwaycenter.org/season/showDetails.asp?key=253

Hope you’re having a great weekend!

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