On the Second Day of Christmas

I Posted on my Blog

Our Family's "Deep Dark Secret"
aka The Longest Jumble of Thoughts and Feelings I'll Ever Subject the World to Reading

A while ago I mentioned there were some things going on around here that I wasn't prepared to share on the blog. Today I am. Or at least I'm tired of not sharing. So here it goes:

It's not a secret that Zoe is an odd kid. We love her and have so much fun with her, but she is definitely odd. Last winter the oddness seemed to be turning in to something else. She was having a tough time interacting with people and she just didn't seem to be progressing past her 2-year-old skills. In the spring, we started spending more time outside and around other kids her age, which only made some of her oddities seem all the more peculiar.

James and I would talk about it a lot. We didn't know how much of her behavior was her personality, how much she would grow out of with age, or if there was something wrong. We kept tiptoeing around the idea of autism, but always threw it out because Zoe talks and, as we thought back then, kids with autism don't talk, right?

Then sometime in April or May I came across a story on Good Morning America, or The Today Show, or one of those programs - following the life of a boy diagnosed with Autism. And he seemed totally normal! My perceptions of Autism were completely shattered and I started cataloging all of Zoe's suspicious behavior. I did a little more on-line research, talked with James and then made the hardest decision I have ever made - I called an early intervention program. It's called Kids Who Count and it's located in the little town of Salem (just a few minutes from here). I described Zoe's behavior and set up a time for some people to come over and evaluate her.

I say it was a hard decision because half of me was hoping that they would say "Oh, she's fine, don't worry" and we could go on with our lives. The other half of me wished they would say "Yep, definitely something wrong. Here's what we're going to do..." Neither half won. What I got was testing, testing, and more testing, without any definitive answers.

After a few weeks of different people coming in and out of the house and meeting Zoe, she was accepted into the program and we started going to a special playgroup twice a week. In a very short time it made a huge difference. We were able to stay with KWC through the summer (they only facilitate kids until they are 3) and then we were handed over to the district. The people at KWC were wonderful, but not very hopeful that Zoe would be able to attend the school district's preschool because she is so high-functioning.

Commence more testing! The people who tested her for preschool didn't quite know what to do with her, so at the end of August she was enrolled in school for a "30-day trial." That 30 days stretched into 3 months. Finally, two weeks ago, Zoe was fully accepted into preschool. She was scoring too high on the cognitive tests to qualify, but anyone who spent more than 5 minutes with her realized that there was something off about her mannerisms, so they didn't want to dismiss her based on the initial test results. After the second month, the teachers called in the district's autism team and based on their observations, she qualifies for preschool.

It's not an official diagnosis (that's the next step) but it's the most concrete answer we've had in the last 7 months. Now the teachers can more adequately meet her needs and I feel less like I'm treading water. Zoe has made so much progress since this whole process has started, though we still have our hard days and weeks. With our winter-induced seclusion I feel her slipping back into her old behavior patterns. She doesn't like to be around people and she gets overwhelmed easily.

So that's the situation. My initial feelings were of utter disappointment. I felt like I was in mourning - for the childhood I had imagined for Zoe, for the relationship with her I had always craved, for the impact this would have on our lives. At the same time I felt relief - that I could finally label what was going on in my sweet girl's life, that it wasn't some terrible thing I'd done, that there were resources to help us.

Now we walk a fine line - the line between pushing Zoe to grow and sheltering her from getting hurt. She's a mostly normal kid, but sometimes she needs help. But then too much help just exacerbates some of her behaviors. Though I understand there is a line, it's a hard balance to find. And then I have to send my precious child into the world (she'll be in primary next year!) and hope that other people will be sensitive to her needs.

Our main concerns for her are all social - she has difficulty responding to questions, whether open-ended or yes/no, she doesn't pick up on social cues (waving hello/goodbye without prompting), she has NEVER asked me a question, she does not sympathize with others, and she doesn't initiate interaction with anyone.

The one thing I would ask of all of our friends and family is to be patient with her and us. Please don't be offended that Zoe doesn't want to interact with you (or screams if you try and interact with her). She does the same thing to us and we are with her every day. She's a wonderful and sweet little girl who just needs a little understanding and, above all, her own space. So as she learns to adjust and adapt, we all get to learn to accept her for who she is.

Now that that's out of the way, I can get on with the more fun (and picture-laden) updates!