Fooling Myself

I'm tired. Like, really, really tired. There have been days lately I could barely get out of bed. I started seeing a therapist. Have tried a few different meds (all of which my body seems to reject in a not-so-graceful fashion). I'm trying my best to be a good mom. Not a good anything else, just a good mom, because that's really all I can do right now.

Things have been rough lately. I haven't blogged in a while because I wasn't sure how much I wanted to share. K isn't doing well. We are having issues with B and school. Or just school, I should say, as B is his usual, wonderful self. We are waiting on the edge of our seats to see if K got into a program for next year that kinda-sorta gives us hope. But, they have one whole space available, and more than one kid vying for said space. I'm not an optimist by nature, but without this program, I don't know what we will do. I really don't.

I'm also dealing with my own health issues. Health issues that will hopefully find a name when I meet with my doctor tomorrow. Health issues that have left me wondering how I am going to make it through the next hour, let alone the next 50 years.

And....

For the past year I've been trying to convince myself that autism wasn't a bad thing. I really tried to jump on that train, thinking I was only helping my children. Helping the world accept them. Helping them love themselves for the awesome humans they are, regardless of how they struggle. Regardless of how withdrawn K becomes. Or how depressed. Or how self-loathing. Turning a blind eye to how hard things really are, even when she tells me. Speaks those words! Mommy, everything is HARD. I told myself I was doing the right thing, because if I admitted how hard autism is, or how it affects my child, I would somehow be justifying murder. That I would somehow look sympathetic to the parents who choose to kill their children. That I had to act as though autism wasn't the big bad, because otherwise people would see my child as the big bad.

And maybe autism isn't the big bad in B's life. He just isn't affected the same way. He has his issues, but he's happy. My job is making sure no one screws him up along the way. But K? I feel like I'm losing her all the time lately, and it's scary and sad and leaves me feeling very lost and very alone.

People can hate me for not saying autism is a gift bestowed upon my kids. They can hate me for coming out and saying how hard life is lately. People can judge my parenting and say it's all my fault. I don't care anymore. I really don't.

I always said I would let my children lead me on this journey, and that what autism meant to them would be what matters, not anything I believe or want to believe. Autism is not something that is a positive force in K's life right now, and the absolute awesomeness that is B is just something a lot of people don't embrace. I just want happy kids. That's all. Hell, I just want to be happy myself.

Life is complicated. Autism is complicated. I can't pretend to be OK with it all anymore. Not with how life is going right now.

I'm sorry if I've let anyone down. This is just our reality.

Now it's back to fighting for my kids.

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.

It Took My Breath Away

I've been going over it again and again. Reliving it. Feeling it. Letting the experience sink it, and trying to absorb just how big the moment was. Hoping, with every fiber of my being, it happens again.

I see the relationships other mothers have with their daughters, and I'd be lying if I said I didn't feel a twinge of jealousy at times. I love K, sometimes more than I think I can bear, but connecting with her in the deep way I see other girls connect with their mothers is just something I never thought would happen for us. I was "OK" with it. Maybe we don't have intimate conversations about life, and friends, and whatever else your average 10 year old concerns herself with, but we do have something really special, and for that I am grateful.

Then last night happened.

I had gone out with a friend, and when I got home I sat on the floor of our den to talk to my husband. On the floor because I have a raging case of "my shoulder hurts really bad", and he was doing his best to massage out the pain. It was almost 10 pm, and I thought both the kids were in bed, but after a few minutes K came downstairs...

She sat down in front of me, legs crisscrossed like mine. She placed her hands on my legs, looked me in the eye, and asked if I wanted to hear about something she had done on the computer.

Let me just stop for a second so that can sink it.

And for me to have a moment to close my eyes and relive it again. And catch my breath.

Usually, K dances or hops into whatever room I'm in, and launches straight into whatever she has come to share. Then, as quickly as she came, she's gone. Being still when she speaks is not something she does. Sitting with me, having a conversation, it's not something that happens. She's constantly moving, and jumping, and while I treasure the moments she chooses to share with me, sometimes I do fall victim to that twinge.

But last night...last night she really engaged with me. She anchored herself, hands on my legs, and connected. I asked a few questions. She answered. Sitting there, looking at me, going back and forth. I don't underestimate how much work those few minutes were for her. She stumbled over words, stopped to collect her thoughts, but stayed with me. The intimacy I felt in that moment with my daughter...I really can't put into words how it made me feel, or how it continues to make me feel today.

When she was finished, she stood up, but didn't run off like she usually does. She stood there, looking at me. She gave me a hug, and asked if she could sleep in my bed. Of course I obliged. I never wanted the moment to end.

It's hard to throw me. I live thinking I know what to expect from my kids, because there is a consistency in how they are, and I've made myself comfortable with it. I thought I had high expectations, but in reality there is so much I have crossed of the list. Things that don't even come to mind as possible. Things I'm not even aware could happen.

But now that I know better, and I'm excited to see what's next. There is something that will come next, another moment that takes my breath away. Now I know to wait for those, that they are possible, and that, well, there are no words for how that makes me feel.

It's Not Easy Being...Pink.

It's lonely when you have a girl on the autism spectrum. The majority of parents you meet have sons that are diagnosed, and girls can present such different issues. I have met so many great parents online, whose daughters seem very similar to K, but they are never local. Facebook and Twitter are great, but sometimes you just want that "come have a coffee with me" connection. Sometimes your kid just wants a play date (and not with the boys she's been surrounded with at therapy since she was 18 mo old.) I long to sit in my kitchen, talking to another mom about the scary thing that is puberty. About school, friendships, the future. About how sometimes our kids just seem like little girls, and other times seem to struggle so mightily because of their neurology. About how to respect them as they grow into women, and make sure they are supported the right way, not the generic "only boys have autism" way.

I've found that parents of girls on the spectrum are exceedingly protective. They tend to coddle their children more than those with boys. For me, I have a 10 yo daughter, and I treat her like I would any 10 yo. Sure, sometimes things are different, but I don't walk into any given situation assuming K can't handle it because of autism. I just assume she can handle it, and have a Plan B if she can't. I don't find that with many other girls, and so as much as I am left alone, so is K. Other parents are unwilling to lengthen the leash they've (figuratively) attached to their child, because all they see are the struggles, and they are so scared of failure, they don't even let their child try.

Now, for years we were OK hanging with the boys. Like I said, K has been surrounded by boys on the spectrum since she began Early Intervention at 18 months old. She never cared much that there were only boys, until recently. A few months ago she decided she wanted play dates exclusively with girls, which is a difficult order to fill when you don't really know any. I'm thankful for my friends, who have daughters K's age, who are able to help fulfill something like K's birthday sleepover request.  But, those other girls are typical, and sometimes get annoyed with K. What I'd love are other girls on the spectrum who aren't going to eventually push her away because she's just too different. Who might share some of K's interests. Or who might be OK going off in different directions during a play date, because they still know they're friends.

Really, it's just nice to be around your own people. Everyone is like that. We gravitate towards others like us, and I want K to be able to gravitate, not have me put her somewhere. I want her relationships to be natural, not only set up my mom.

But, yeah, hard when K's people live thousands of miles away, or their parents shy away from letting them do much of anything.  

The one bright spot in all this is that a new girl has started in K's class at school. A girl her age, with a lot of the same interests. Who is just as excited about having a new friend as K (although I might be more excited than both of them, combined.) They have their first play date on Sunday, and even though they live an hour away, it doesn't matter. It's rare K finds her people, and an hour is nothing. I'd gladly drive that every week, so she could be with her friend. A friend she's made, not one I've found for her.

Her people.

Hopefully, as time goes on, other parents who have daughters on the spectrum will be more willing to let go. Their children won't be alone. Other girls like K can't wait to meet them, and other parents like me always have an open kitchen, a cup of coffee, and time to talk.

I Don't Want You To Think My Kids Are Awesome

I see a lot of it around the Internet, people fawning over kids with disabilities because they are disabled. Because they don't know what else to say, since clearly a disabled child has nothing much to offer. That because these kids face challenges in life, the only things that can ever be said are over-the-top, candy-coated, and superficial. As though nothing deeper exists beneath the surface. Under that expertly posed, or not, cute kid photo. Descriptions of their hi-jinks the child never meant to be funny, but is used that way, anyhow. It's condescending. It makes these kids into nothing more than a marketing ploy for a blog post. Click-bait.

That's not to say our kids aren't fabulously beautiful creatures, but I would never want either of mine to be viewed as only that. I don't want my kids to be "awesome" when they do the most mundane things. That means expectations are low, and that's not OK. I don't want people patronizing my children by calling them geniuses, or special, or amazing, when they do something any other kid their age does. Being autistic doesn't mean they are incapable of even the simplest things. It doesn't mean they need to be fawned over like babies. Besides it being disingenuous, it teaches them that no matter what they do, they're perfect little people who can do no wrong. That the world revolves around them. That they should expect high praise every time they accomplish even the most trivial task, or have an independent thought. Sure, progress is always great, and celebrating new achievements is not a bad thing, but there is such a thing as going overboard. It's about respect. Presuming they know everything that is said, and goes on, around them.

I want more for my kids. I want them to be seen as whole people. As capable people. As individuals who will accomplish great things in life, surprising no one. Their paths might be a bit different, but they should be treated the same as their peers, with an attitude of "I knew you could do it!", and not,"Omigosh, you actually did it???"

My kids are awesome, because they are pretty cool people. Not because they are autistic and so they have to be, because it's a nice thing to say. Or because the bar is set so low, anything they do is a miracle. That's the opposite of how they should be viewed. I want them to grow up knowing they have to work hard, like anyone else. That they can achieve their goals. I want the accolades they receive to be well deserved because of their abilities, not their disability. Sure, each kid is different, and each child takes their own, unique path, but how we treat them along their journey is important. Treating them like you would anyone else, as much as possible, is the best gift you can give.