Thursday, May 10, 2012

I Didn't See That Coming

Confession time:  I used to be stupid. {Shut it, Joshua.} I also used to be more than a little naive.  When I first realized that Sweet Girl had autism, I thought "OK.  I'll handle this.  We will work hard and we will get better and we will hit the doors of kindergarten ready to go without autism." After all, this was my kid.  Who did autism think it was? Clearly it had no idea who it was up against.  Autism could try to take my girl, but it wasn't getting one piece of her without one hell of a fight.  And so we were off; diet, supplements, therapies, school, and time.  That's what we used, not to mention a lot of love and bubbles, in our fight to keep autism from taking over Sweet Girl's development.  It was a good plan.  She has worked hard.  She has gotten better.  She will go to kindergarten next year.  But she will go with autism.  She will go to kindergarten with autism because what was I thinking?

What I was thinking was that she would overcome this intangible force that made things difficult for her.  Our autism - because no two people with autism have the same autism - involves anxiety, sensory issues, communication deficits, speech delays, and social/emotional gaps large enough for Oreo to get comfortable in the negative space.  So when I thought she would go to kindergarten without autism, I pictured her talking in a natural pattern: complete sentences with proper syntax and verb conjugations.  I pictured her being comfortable with new people.  I pictured her sitting at a lunch table with other students and having a conversation over raisins and juice boxes.  I pictured her able to express her feelings calmly to others.  I pictured my girl being normal by other people's standards.  Sweet Girl is certainly going to kindergarten, but not anywhere near what others would consider normal.

But instead of normal, she is going in all her Sweet Girl glory.  She is taking her singing, and her scripted phrases, and her anxiety.  She is taking her constant motion and her struggles to put her thoughts into original speech.  Sweet Girl is taking her struggles with her.  She is taking all that, but more importantly she is taking her amazing mind, and the skills she's learned in three years, and her desire to learn and be a part of a community (even if she prefers to pick and choose how and when she'll participate), and her giant, sparkly, there-for-anyone-with-rods-and-cones-to-see heart.  She will also be taking bacon everyday for lunch, but that's neither here nor there (and it's gfcf, nitrate/nitrite free so don't judge).  That's how she's going to kindergarten.  Different by other people's standards but truly amazing by mine.

I used to think: "If I can just get her into a regular kindergarten, then I'll feel like we've done something truly great."  And we have.  She has.  Having Sweet Girl be recommended for placement in a mainstream classroom is a feat in and of itself.  She earned that placement.  She actually earned that placement about 50 times over, but she has made so much progress in several different areas that I feel (as do others that work with her, first and foremost in this process, her pre-k teacher) she really should be there.  So I was thrilled at that IEP meeting to know that was the direction we all were prepared to go.  What I didn't see coming was that I'd be worried (even after having an awesome conversation with Sweet Girl's BCBA about worry being passive and doing absolutely nothing good) about it.  We're moving in June.  We are leaving Sweet Girl's school, her BCBA, her speech and language pathologist, her occupational therapist, and the environment in which she has grown by leaps and bounds.  I didn't see this coming.

I also didn't see my change in perception coming.  I didn't know that three years removed from my stupidity {I said: Shut it, Joshua.} I would be so blown away by my daughter's abilities; how she has risen to the challenge; the way she has conquered so many things that were, and some still remain to be, difficult for her;  how she has changed to be open to others while still remaining herself; how she would change me and how I see the world, that I would be excited about a mainstream placement all the while realizing it's not the truest measure of Sweet Girl's growth.  I had no way to know that achieving the long-term goal I set for Sweet Girl three years ago, would mean so much and so little at the same time.  We have many more challenges ahead of us.  Some of them are known and some will be things we have no way to see coming.  But I have faith in my girl.  I have faith that we will find great people to help us face our future challenges.  And I know whatever comes up, Sweet Girl will handle it in her own way.  She has blown me away.  I was with her every step of the way, but I really didn't see her coming.

1 comment:

  1. You live too close. You watch for it everyday. You adjust to her changes. Some of us have seen her coming because we don't see her for weeks and then she is there. In all her glory, in all her beauty, in all her wonder and growth. How amazing this Sweet Girl is. She will blow you away with her wit, her charm, her intelligience, and oh yes her singing. How we love her and see how she has grown in the two short years we have had to be so close. We will treasure this time and pray that the next two years bring just as much amazing growth from our Sweet Girl as these two years have.

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