One Step Forward...

Sometimes, when I look at K, like really look at her, I just see a 9yo girl. A 9yo girl who has come so far. Who has made progress by leaps and bounds. Who I can trust to take the dog on a walk down the street, or a bike ride to the "second stop sign" in our neighborhood, all by herself. Who talks about fashion, and wants to wear make-up. Who rolls her eyes at me, and acts like I'm ruining her life. Just a 9yo girl.

Then, something like yesterday happens. Perseverating over a boy at school constantly setting off a fire alarm timer (seriously, who's bright idea was it to make "fire alarm" an option on a timer!?). Having a giant meltdown because she doesn't understand why she can't attend a birthday party of one of B's classmates. A meltdown like I haven't seen in a while, where I am lucky our neighbors mind their own business so I don't have to deal with the police showing up, asking why my kid is screaming at the top of her lungs (not an exaggeration) for a half hour.

Or the days she withdraws from us, and wants zero interaction. When she tells us not to talk, and that she doesn't want to talk, either. Where her body just seems so uncomfortable in the world. The times autism doesn't allow us to forget, if only for a moment, it is here.

To some, autism is just a different way of thinking. Not a disability. Not negative. Just a difference. I'd be lying if I said I haven't tried to hop on that train, because it sounds pretty good. Then reality crashes in, and I realize for K, autism isn't just a "difference".

Being autistic, having autism (whichever she chooses down the line) has a negative impact on K's life. It just does, regardless of how wonderful some claim it to be. It has caused other kids to shun my child. It has caused restraints in school. It has taken her out of our community, to a private school an hour away. It causes her heart to break over and over, because she can't understand social rules. It causes her to lash out, unable to handle frustration. It causes her to be overrun with anxiety on a daily basis.

It takes my 9yo, who can do things similar to her peers, to suddenly take giant steps backwards. Always.

Earlier this year we had an IEP meeting where a comment was made in the context of discussing placement. Someone said that K will always be how she is right now, so where she is educated doesn't matter (ie, she can be in the substantially separate class forever, no big deal). I took issue with that statement. I want so badly to believe that K can be successfully mainstreamed one day. That it does matter where's she's placed, because the right placement now could positively affect where she is down the line. That no one can look at my sweet 9yo, and predict the future. That how dare anyone decide her life for her, or say she'll never learn how to cope.

But, the truth is, maybe I am scared they are right. Maybe for all the progress we see, there will always be steep regression. Regression that will keep her from being truly independent (which she wants so badly). With her peers. Within society. That autism will always have this impenetrable hold, regardless of anything we do. Any school she attends. Any therapy she tries, or med she takes. That as many times as I tell her how smart and beautiful and talented she is, she'll always "hate her life" (her words). You might want to look at autism as just a difference, but that's not K's experience in the world. And it's her experience alone that is authentic to her. No one else can speak to that. No one.

It's been a struggle for me as K's mother to watch lately. As she struggles between being a 9yo girl, with typical 9yo girl interests and attitudes, to being under siege by an invisible thing that won't let her just be. Of course autism isn't something I can separate from K, but it is definitely a difference that has interfered with who she wants to be, what she wants to do, how she wants to live.

K deserves, just like anyone else, to have a chance at the life she imagines for herself. Unfortunately, days like yesterday make it painfully clear how things aren't always in her control. The difference in her brain makes sure of that.

It's just not fair.

Autism isn't just a difference to K, it's a disability. That's the honest truth, regardless of how others would like to paint the diagnosis, or generalize how it affects everyone. No mother likes to see her child hurting, and that's my truth.

Determined

Lately, I've been reading blogs authored by adults on the spectrum. I have fought against doing this for a long time. To be frank, part of me doesn't believe I can learn anything from a person who made it to adulthood without a diagnosis. We don't make it through a day here without autism ruling the roost, let alone 20, 30, 50 years.

But, I am trying to remind myself that things were different "back in the day". That their lack of a diagnosis in childhood doesn't mean they weren't autistic. They just lived in a time where doctors knew too little, and help was non-existent. Where parents were told their children might be schizophrenic, or bi-polar. Or shy, introverted, weird.

Even if these adults aren't exactly like K, they deal with a lot of the same issues. As she approaches her 9th birthday, and as things are really starting to bottom out, I find myself wanting to know anything about what the future might hold.

And, honestly, if K is more severe than these adults...I'm scared to death.

These are people who got through college. Living away at dorms, even. But, who still have an immense amount of difficulty in daily life. Whose autism gets worse as they get older. I can't imagine K ever living in a dorm. At least, not right now. And if things only get worse with age...

One thing I read really struck me. A woman wrote on her blog that, although people never really knew of her issues when she was a teen, throughout her whole high school career, she just wanted to die. Every night she went to bed, hoping not to see morning.

For her, "faking it" took it's toll. Now, as an adult, she can no longer fake it at all. She needs a lot of help just to make it through her day. She cannot work, drive. Her college degree goes unused. She's had multiple hospitalizations due to suicidal thoughts, and unbearable anxiety. And, while most adults on the spectrum write of neurodiversity, and the ways in which their autism makes them better, she is honest about how her life would be better if autism didn't play a part.

We have such huge issues now, and have for years, I can't imagine what the future holds. Or, rather, I don't want to imagine. I am completely fine with K living with us forever. I will accept whatever she chooses to do or not do. What I cannot accept is her ever wanting to die because of  expectations we, or anyone else, set for her.

I never want her to feel that she has to be "normal". That, no matter the cost, passing is the goal. Those who have followed me for a while know that I just want her to be happy.

Just.Happy.

I have feared for a long time that I could end up with a teenager who feels so lost, so depressed, that...well...I can't even put it down in words. Her self-esteem is already so low, I can't fathom it getting lower. Add in puberty and hormones, and it's like the perfect storm.

I really just feel frozen. I am so unsure as to what my next step(s) should be, and I don't want to make the wrong choice. Do the wrong thing. Make my daughter feel like some of these bloggers...who think life isn't worth living because of their autism.

In a way, reading these blogs is probably like Googling a headache, and deciding you have a brain tumor. Autism is a complex thing, and it isn't going to affect everyone the same. I should remember that a lot of these adults didn't receive any help as children, and maybe that's why they struggle so much now. That K's road might be different because we have fought for her, and we want to understand her needs, and give her the best life possible. Not a life we have planned out, but a life that will make her happy.

K turns 9 next month, and birthdays are sometimes more worrisome than they are joyful. We have so much going on right now, I wish I could just stop time, catch my breath, and figure things out.

But, alas. Time stops for no man (Or woman. Or child). Awareness on my part is key, and I hope K lives a fabulous life, where she looks forward to every new morning. If I have learned one thing from these adults on the spectrum, it's to accept and love my children as they are. To be understanding. To focus on their gifts, and not their deficits. To make others do the same.

For that, I am grateful.