Tuesday, June 05, 2007

Little Miss Sunshine

For any who don't know this already, our daughter is autistic. Or may be autistic. It at least seems very likely that she has something called sensory integration disorder. At four years old, she responds to her name, certain music, and not much else. She does not understand spoken language. She communicates in a limited way through picture cards, as well as by taking your hand and leading you to what she wants - the windmill cookies, the back door, the chair where she wants you to sit so she can climb on you...

Between her extremely irregular sleep patterns, her lack of communication, her frustrating habit of emptying anything she can get her hands on, whether it's the silverware drawer, the cereal box, the water bottle, the clothespin bin, the asparagus bed... It can be quite challenging at times.

However, as Lori mentioned recently, she has been an absolute joy to spend time with lately. It doesn't matter if I'm feeling sad or grumpy or depressed or frustrated. Ten seconds with my little ray of sunshine is all it takes to put a smile back on my face.

She wakes up happy. When you pick her up, she squirms happily. When you put your face close to hers, she giggles almost uncontrollably. She purposefully runs from room to room, in her distinctive canter, babbling away to herself. She writhes with anticipation when the school bus comes, and wriggles with delight when we get her off the bus at the end of the day. She loves physical contact with her mommy and daddy, she makes great eye contact, and she finds her own way to get her point across.

These days, she also smiles more than any kid I've ever met.

We've long been interested in homeschooling, but I have to give credit where it's due. The progress she's made with her teachers and therapists at school has been remarkable. And this isn't some fancy expensive therapy program - it's a free service through our rural public school system! They have a wonderful team over there, and they know a little magic that we don't.

We've been thrilled with the things they've done to help her make some sense of the world. And even though she can't talk, I think it's clear that she's thrilled too.

I think it's also clear that even without language skills, she knows at least a hundred ways to say "I love you."



At 6/06/2007 6:53 AM, Blogger Wendy said...

Whatever one's educational choice for one's children, I think it's important to do what works best for one's family - whether it be homeschooling or public school, and often what works for one child doesn't work for another - even within the same family.

Congratulations on finding that balance.

She's beautiful ;).

At 6/06/2007 4:20 PM, Blogger barefoot gardener said...

This brought tears to my eyes. As I may have mentioned, I work in a group home for DD adults. I work with autism, obsessive/compulsive disorder, and (sadly) what is just labeled "retardation" in the files. I hate that word, by the way. Anyway, my point being that I work with 4 guys whose families made no attempt to teach, love, or accept them. Okay, I really can't make that judgement, but three of the four are wards of the state and never see their families. Now, my guys are fairly extreme cases, but I can see where the system and their families have failed them. I am so glad to see someone who truly enjoys their child, both in spite of and because of their uniqueness. You have two beautiful children, and they are lucky to have you and Lori for parents!

At 6/06/2007 8:05 PM, Blogger JBTW said...

I could say it in so many ways, but I know I would just be rambling and repeating myself... that was such a lovely thing to say about your daughter. (It's wonderful not only how you can express your viewpoint, but that you share it with 'us.')

At 6/06/2007 10:30 PM, Blogger Beo said...

Nicely done E4. I share your joy and am happy it is continuing to find you and your family.

At 6/07/2007 2:09 PM, Blogger network_weasel said...

I am glad to see I am not the only one effected by your post. I don't remember you being this smart when we lived together. Then again we could kill an afternoon just throwing a hat back and forth, so how bright were we?

At 6/07/2007 5:24 PM, Blogger maggie said...

She sounds magical.

At 6/07/2007 9:13 PM, Blogger Robbyn said...

Man, you just made my day! What a great daughter, and what a blessing she is to you! These are the best parts of life :)

At 6/08/2007 10:08 AM, Blogger Pea said...

She's beautiful. You are both blessings to each other.

At 6/09/2007 9:45 AM, Blogger gtr said...

Awww... lovely post. And a lovely girl!! May the sunshine continue...

At 6/09/2007 10:10 PM, Blogger e4 said...

Thanks for all the comments everybody.

The most interesting thing happened after I posted this. An online friend of mine contacted me to let me know about a medical condition she happened to run across... and got chills reading this because it was such a close match. It's called Angelman Syndrome.

So we'll be giving our pediatrician a call soon to see if we can get her tested for this.

And a diagnosis means we can zero in better on what therapies will work best. (Happily, we've already hit on most of the right ones.)
Plus a better understanding of what's going on with her, and support groups, and maybe even research trials and treatments some day.

At 6/10/2007 9:12 PM, Blogger Morgan said...

miss you all!

At 6/20/2007 12:23 PM, Blogger Kati said...

I'm gonna stick my oar in just to say sometimes I hate labels if all they do is tell us what's wrong with your child. ok, if it helps us ease her way in the world, helps us understand her better, etc. I just hate the idea that there is something "wrong" with you child, when obviously, she is so "right" and beautiful and loving. She probably ain't broke and needing fixing half as much as many of us "normal" people are!!

At 6/20/2007 1:46 PM, Blogger e4 said...

kati - I know where you're coming from, and I agree to a point. But, I wouldn't see a definitive diagnosis as a label, so much as an explanation, or a way of understanding.

For example, it wouldn't make sense for us to keep spending extra time on verbal speech therapy if this is what she has. We wouldn't stop using language with her, obviously. You never know how things can turn out. But we could re-prioritize her therapy to give her the most benefit. She is clearly much happier for the improvements her therapy has given her.

Also, it would be helpful from a certain standpoint to know whether there's any likelihood of ever having an actual conversation with my daughter.

If we never find out, I'm fine with that. But there are benefits to knowing how she's wired.


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