I Gave Myself a Day

Last Monday, my husband and I got the results of K's latest neuropsych testing. It was an hour of listening to someone highlight all of K's struggles, and realizing that things are worse than we thought. She's our kid, we aren't blind to her issues, but we also see her through a different lens than a stranger. We've adapted ourselves so much to her needs, we didn't realize just how affected she is by the autism-induced anxiety she deals with each day. Especially away from home.

Unlike most people, I usually go into these meetings thinking we'll hear really positive things. Don't ask me why. I am not in any sort of denial, I just always think that maybe my parenting skills are lacking, making things seem more difficult than they actually are. So, in reality, K is OK, I just suck at what I do. I guess it should be a relief to hear things are even worse than I thought, but I wouldn't mind being told otherwise, just once.

Every time we have some sort of testing done, the doctor confirms the autism, and each one seems to think it affects K more than the last. Yes, she's made tons of progress over the years, but with age comes new challenges. At 10 she is much more affected  by them than when she was a toddler, or in early elementary.

Everything is overwhelming for her. Everything. That is what the doctor told us. Her anxiety is so bad, she can't access anything. It will most likely always be that way because the anxiety is tied to the autism, and though medication might take the edge off, we'll never see a big change.

She's falling behind more and more academically. Nothing motivates her, because even the prize at the end isn't worth the hardships to get there. We need 15 hours of home ABA, a new school, but what any of that will look like? No one can say.

She's not at the point where she can understand social pragmatics (can I get a refund for all the years of social groups we've done?) She has no coping skills, just maladaptive behaviors. Though she has a good vocabulary, she's a "reporter", and cannot hold conversations. Not the type of conversations she should be holding at this age, which was driven home at a birthday party we attended this weekend, where I was surrounded by typical 11 year olds. Heck, it was even driven home by the other girls on the spectrum at the party who are just leaps and bounds ahead of K in a lot of ways.

I used to ask each doctor what they predicted for her future, but I've stopped doing that. I'm too afraid of what they'll say now.

There's more. So much more, but we don't have a paper report yet, and I can't remember everything. My head was swimming when we left. I just wasn't prepared.

It is truly sad to hear all of your child's weaknesses pointed out at one time. It's sad to know how affected she is by her diagnosis. It's sad to sit at a table and know that no one has any idea what kind of school she needs, or how to really help.

So I gave myself a day. A whole day where I wallowed in everything I heard at that meeting. A whole day where I cried over K's future, and the fact that, at 10, no one knows how to best help my child. A day to lament the fact that all the therapies we've done have been far beyond her, hence why we never saw progress (we just didn't know.) A day to curse the gods for making life so difficult for my beautiful girl. A day to be angry at the public school that let her fail because they just didn't see how bad things were. They made assumptions about what she was capable of doing, and those assumptions were just so, so wrong.

One day, and that was it.

I don't think feeling sad is a bad thing. I don't think I'm a bad mom for taking a day to cry over everything the doctor told us. Yes, K is still K, and that is something I don't need to be told. I don't need to be told it's OK, or that it's just a piece of paper (or someone sitting across a desk, ripping your heart out.) I don't need to be told anything by anyone. I just needed a day.

Now things are back to normal. We do what we need to do for our daughter, without getting bogged down by what "it" all means. I continue to enjoy the girl I know, and see the best parts of her, because there are oh-so-many best parts. I continue to let K lead me through her life, because it is her life after all, while figuring out how to make that life as happy and fulfilling as possible.

You can choose to be consumed by information and test results, or you can choose to just enjoy your kid. Take the time to be sad. To cry. To vent your frustrations. But don't live in that place. Never, ever life in that place.

An Orphan with Red Curls, and Time with My Girl.

I love the movie Annie. It was one of my favorites as a kid, right up there with The Wizard of Oz. Our copy was a VHS tape, recorded off the TV. I even remember some of the commercials. The other day when I was doing my daily Target run, I came across Annie in the $4.75 movie section. I was really excited because I hadn't seen it in years, and really wanted to share it with K.

Last spring K and I went to an autism friendly performance of Annie, but there's really nothing like the movie. I envisioned the two of us snuggled up on the couch, big bowl of popcorn perched precariously on her legs, singing along to the songs together.

Well, OK, I would do the singing, and she would ask me not to, but you get the point.

I'm not new here. I know how at home movies go with K. She actually does much better in the theater. Less distractions. Dark, quiet, room (sensory-friendly films are not sensory-friendly to K, because she needs quiet.) At home she sometimes watches a movie, and sometimes wanders around, occasionally coming back to it. She is a snuggler, but only for a certain amount of time before she needs out. Still, I couldn't help but imagine some Hallmark-like moment of sharing a favorite movie with my girl.

It started out like I imagined. Sorta. I made a bowl of popcorn, which ended up mostly on the cushions and floor. I sat on the couch, smushed into a corner, while K stretched out at some random angle. But, we were together, and she was a willing participant!

What I soon realized is that the DVD version of Annie is a lot longer than the "taped from television" version I grew up watching. In the first half of the movie, there were several songs I never even knew existed. And the first half of the movie probably lasted as long as the whole "edited for time allotted" version. Once K's popcorn was gone (and the kernels promptly spilled everywhere, because when does that not happen), she got squirmy. I could tell the movie wasn't holding her attention as it had held mine all those years ago. Eventually, after rolling onto the floor, she looked up at me and said she wanted to go upstairs. I know better than to force anything, so off she went.

I get stuck in this trap, often. Even though I've been around the block and back again, I seem to forget reality. I don't even think about it in the context of wanting something different, I just think about it in the context of how I was as a little girl, and projecting that on K. Autistic or not, it doesn't mean she will grow up the same way I did, or love the same things I did. She's her own person, and maybe Annie was just plain old boring to her.

What I love is K wanted to watch Annie with me. She got home from school and the first thing out of her mouth was a reminder that we had plans to watch it together. She happily sat down on the couch, and cued up the DVD player. We spent time bonding in our unique way.

K not making it through the whole movie doesn't take away from the fact that I really did get what I wanted in the end. I got to share a favorite movie with my daughter, snuggled on the couch together in a "K sorta way", and I did get to sing along while K gave me the eye. No, we didn't make it through the 12(?) hours of unedited Annie, but that doesn't matter. What matters is that we had that shared experience. Instead of getting upset that my almost 10 year old can't sit through a video, I immersed myself in the beauty that is spending time with my girl. Isn't that all that matters? Not how things happen, but that they happen. We got to spend time in each other's worlds, and that's better than any imagined Hallmark moment, any day of the week.

You're Missing Out...

When you have a child with autism, there is a part of you that is always waiting for the other shoe to drop. For years I sent K off to school, waiting for that phone call home. A note in her folder. An inevitable meltdown. I lived holding my breath, not able to relax because I was constantly bracing myself for the next "bad" thing. Autism hung over my head like a dark cloud, waiting to ruin...everything. 

I used to live like this. I do not anymore. 

This weekend I read two things that hit me right in the gut. One was a dad saying he could never enjoy the good days with his child, because there would inevitably be bad days right around the corner. Another was a mother saying that autism was her whole life, and not a minute went by where she wasn't completely consumed by it. 

Both made me sad. Made me cringe. Made me realize how hard it is to get away from that type of thinking. I feel lucky I found a way out, although my way out was not one I wish for other people. K was mistreated by people we trusted, and because of this mistreatment I couldn't help but change not only how I viewed my child, but autism as a whole. I hope others can find a way out before their children suffer, which is why I write what I do. I have to. 

I can't say, though, that I never enjoyed the good days. I think I jumped for joy on those days, relishing every second. I did always end a good day wondering when that other shoe would drop. What price we would pay the universe for the one day I didn't feel like we were circling the drain. But, holding onto those good times is what helped me survive. Allowed me to get up every morning. Kept me fighting for my child. You must always, always, hold onto those days. Live in them. Be in the moment. They can be our greatest anchor when times get tough. 

These days, we have more good times than bad. Mostly because of how I changed the way I look at K, the way I treat her, the way I view her life. It's amazing how changing yourself can affect your child. How when you accept them, really accept them, and stop viewing autism as the big bad, everything gets so much easier. Sure, your kid is still autistic, and there are still days that are so, so difficult (I am not denying that), but when you let go of trying to "fix" your kid, or of your own resentment, well, I can't explain the weight lifted from your shoulders. 

My life used to revolve around K's diagnosis. It really was at the forefront of my mind every second of every day. Our weeks were filled with therapy after therapy, trying to get K as close to normal as possible. That's the goal, normalcy. Or so we're told. I really can't think of any other neurological disorder where you are told you need to force your kid out of it. Where the only goal is for them to pass as typical, and if you don't somehow reach that goal, all is lost. Where it's OK to abuse your child with chemicals and pills. Where it's OK to restrain kids, and toss them into isolation rooms. Where making sure autistic people know something is terribly wrong with them, and that nothing they say, think, or do is right, is just part of "therapy". 

It seems unique to autism, just the pervasive hatred of the disorder itself. Hatred that spills over onto the kids (and adults), because how could it not? Hatred that allows murderers to be sympathized with, and people to be harmed, physically and emotionally. 

Before I took a good, hard look at what I was doing to my child, sure, my life was autism, and K suffered for it. I didn't listen to her as I dragged her literally kicking and screaming to speech. To social group after social group. When our home ABA person would come, and she'd barricade herself in her room. I thought her behavior meant I wasn't trying hard enough, when in reality her behavior meant I was trying too hard. I had a kid who just needed to be, to exist solely as she was, without being forced to be someone else. I missed getting to know my daughter during those years, because I was hell bent on fixing her. It's my biggest regret. 

So now, my life doesn't revolve around autism. My life revolves around my kids. I am no longer burdened with trying to fix them, because they don't need to be fixed. I don't worry about their differences. I don't sit online all day trying to find the latest and greatest therapy. Our afternoons are spent at home, spending time together, not in waiting rooms. I enjoy them for who they are, and give them space when they need it. I maneuver our lives so that they are comfortable, and I don't wish for any magic pill or treatment to cure them of themselves. I am sad I ever did. 

I no longer look at a good day as just the lead in to something bad. I just try not to put my children in situations that I know are hard for them. It's a process, learning the ins and outs of your child, their needs, but it's worth it. I no longer hold my breath, waiting for the next meltdown, because I try my hardest to make sure my kids don't feel the need to react that way. No, I am not perfect, like, at all, but our days are more peaceful because I've finally learned how to parent an autistic child. I have made mistakes along the way, I'm only human, but I have come a long way. 

When you look at autism as the devil, as something that has stolen your child, you are missing out on that child. On everything they do have to offer. The love they have to give. Life might not be what you imagined, but it still needs to be enjoyed. There are definitely things I wish I could cure for my kids: GI issues, Epilepsy, but I don't need to cure them from their unique neurology. I need to step back and let them be themselves, and make sure they know they are everything that is right in my life, not what is wrong.