I've learned that some days are good and some days are bad (and some days are very, very bad). There are days when Little Miss is on the ball -- she gets what's going on, learns at school, and keeps herself under control. And then there are days when she is so steeped in her fantasy world that I need to physically draw her out just to keep her safe. My hands are scarred from her pinches, my body is exhausted, and I've got two loads of laundry running just from accidents.
I've learned that there are professionals who really want to help and those who are just collecting a pay check. It makes me crazy to think that someone wouldn't want to do their best by these amazing kids, but everyone has their own agenda. We've worked with therapists and teachers who have gone the extra mile for Little Miss and those who have cut corners or sent her on her way with far less than she needed. But for those professionals who truly gave it their all, we consider ourselves blessed.
I've learned that Free and Appropriate Education (FAPE) doesn't always mean what's best for your child. As a matter of course, the district isn't allowed to provide the "best" education for your special needs child -- just an "appropriate" education. And oftentimes, families are stuck with a definition of "appropriate" that is far from satisfactory.
I've learned that "inclusive" is relative. Little Miss is included in Girl Scouts. The troop leader has even told me privately that Little Miss can do what she needs to do in order to participate to the fullest of her ability -- whether that's taking a break and running up and down the hallway or doing sit-ups on my lap during the lesson. But there is no specific instruction on how to adapt activities or lessons for girls with special needs. She is included, but not met at her level.
I've learned that special friends will appreciate my daughter and what she has to give. I received an email from a classmate's mom asking for a play date with Little Miss. When the mom asked her daughter what she likes to play with Little Miss, the girl's answer was simply, "we play Frozen. But I really like her for he heart."
I've learned to keep my efforts local. At first, I was everywhere -- trying to do everything and hoping to find some kind of support for my daughter. Like many parents, I turned first to Autism Speaks. I found good information there, but no real help. With time, I began to discover local organizations that were actually making a difference in my community. Milestones Autism Organization, Connecting for Kids, and others. It is these organizations who will receive my money and my support -- not the giants who spend far too much on their own salaries.
I've learned that my child will continue to surprise me. I fully expected Little Miss's disdain for all things academic to lead us to the battle of a lifetime when we started reading this year. And don't get me wrong -- there HAVE been battles. But she IS reading. She's not at the level of many of her classmates, but by God, she's reading.
I've learned that my daughter doesn't need awareness -- she needs acceptance. Little Miss is never going to be the same as her peers. She sees the world through a much different lens than you and I. A few weeks ago, an autism site on Facebook shared this cartoon by Lunarbaboon:
|"Mess" by Lunarbaboon|
It's my job, as Little Miss's mother, to encourage her, to celebrate her differences, and to nurture her strengths (even if her primary strength at the moment is making a colossal mess). The first step toward celebrating Little Miss's differences, unfortunately, has to be acceptance. Because, trust me, we are all aware that she is different at this point.
I've learned that love makes everything worth it. We struggle. We have bad days. I can't lie. But our lives are far from being a desolate, lonely existence. Yes... I was up at 4 AM this morning, but I was with a small, snuggly person who whispered in my ear, "I love you more than chocolate."
She is mine and I am hers. And that is what really matters.