Katy Perry

When I bought tickets to take K to see a Katy Perry, I was hit with a lot of "opinions." Mostly, was I insane for thinking I could take my autistic 10 year old to a large arena concert? 

My thought process was, if it all goes down in flames, we'll just leave, but I wasn't going to not take her just because she's autistic. She likes Katy Perry. She's super cute when she sings along to her songs. She deserves to see her as much as the next 10 year old girl, and I loathe, really, really loathe the idea or lot letting K do something bc of her neurology. I absolutely am not the parent who makes assumptions based on a diagnosis, and I would rather fail hard than never take the chance at all. 

I prefer to see K as a 10 year old girl, rather than a kid with autism. I think she deserves that (can you tell I have some strong feelings about this?!) 

Now, I was a bit nervous going in. Mostly because I had bought tickets in the balcony (I'm cheap), and K can sometimes have an intense fear of heights. The couple days leading up to the concert I was kicking myself for not buying in a lower section, but there wasn't much I could do about it, so I hoped for the best. 

We armed ourselves with binoculars, headphones, and once there I loaded us up with plenty of snacks. All things that would, I hoped, allow us a successful night. 

The first thing we did was stop off to buy a t-shirt. K chose the most rainbow-y one, and immediately wanted to put it on. 

Then we got settled in our seats (no freaking out, and K loved having the binoculars!), and waited for the concert to start.

This was probably the most difficult time of the night. K wasn't familiar with/didn't care about the opening act, and the hour wait between them and Katy Perry was not her favorite thing ever, but she did fantastic! Sure, she asked 70-11 times when Katy Perry was coming onstage, but probably every other kid there was asking the same question. 

We took a walk. Went potty. Bought some more snacks, and made it through unscathed. 

Now, I wish I had a photo of K's face when Katy Perry took the stage. Her eyes opened wide, and a giant smile on her face as she turned to look at me. It's forever etched in my memory. I knew at that moment it wasn't a mistake bringing her there. 

About halfway through, K was petering out. Mostly because it was late, and she was tired. She didn't get upset, though. I told her we could leave whenever she wanted, but Firework, her favorite song, wasn't until the end (thank you Setlist.fm. Being able to show K the set list (especially during the opening act when she wanted to know how much longer they'd be playing) was invaluable!) So, she decided to hang in there and stay. 

It didn't hurt that one part of the show was cat themed. That was such a highlight for my animal loving girl! (Kitty Purry, I think it was?) 

I was pretty sure K was going to fall asleep in her chair by the end, but she hung in. She got up and danced, sang along, and really did have a great time! The few fears I had were totally unfounded, and I felt vindicated. I hadn't made a horrible choice bringing her there. 

A label will never define what K can and cannot do. Never. Even if it hadn't gone well, I'd still be proud we tried. She liked Katy Perry, she wanted to go, the end. 

It was a fabulous night, and one I look forward to repeating again. Maybe I'll even spring for the good seats next time. 

My girl is a firework! 

One last photo. Waiting for the subway. Making sure mom doesn't cross the yellow line :) Just because she's cute. 

 

 

 

 

 

 

Thinking it Doesn't Make it So...

The other day I was thinking back on K's end of year performance with her Adaptive Dance class. It made me smile, how she took her part so seriously. How proud and excited she was to "lead" the group. How she got everyone to bow at the end.

K is a verbal kid, but rarely, if ever, will she speak up for herself. There have been times in dance class when she's had a really rough time. Something bothers her, words fail, and she just walks out in tears. 

It's not because she doesn't enjoy class. It's not because we are forcing her into an activity that just isn't the right fit. It's because verbal doesn't always equal having words. She still has language deficits that make it near impossible for her to say what she's thinking, sometime.

So behaviors happen, and I am sure those around us are thinking, why does her mother drag her here every week if she's not happy?

The truth is, I don't drag her anywhere. Anyone who knows K knows that's impossible, anyway. If she hates something, she won't do it. I am certainly not driving an hour each way, early on a Saturday morning, for my own benefit. She wants to go. She wants to be part of the class. Sometimes things get hard because of how her autism affects her. Because of the language issues being autistic brings to her table. Language issues that fuel her anxiety, and lead to meltdowns. Everything is intertwined.

I'm not saying that in a derogatory way, it's just reality. Each autistic person has their own strengths and weaknesses, and I won't deny that being autistic comes with challenges. There are things I love about K that I know only exist because of her neurology, but turning a blind eye to the other side of that doesn't help anyone.

There's been a lot going around, lately, saying what autism is, and what it isn't. While I agree with some of it, I'm not on board with it all. I think there are a lot of things that go hand in hand with autism, and some of those things make life a bit more difficult for K. Even when she's doing something she loves. Seeing that, understanding that, will help me in situations like dance. I can pass along what I've learned...what I've seen...and hopefully ease the burden for K.

Her teacher knowing that she so badly wants to be given extra responsibility, but doesn't know how to ask, will help. Him understanding that sometimes K just needs a break because she becomes overwhelmed will help. Knowing what doesn't help, like trying to cheer her up when she's devolving into her own, personal, sensory nightmare, is also important.

I want to walk in on that first day and tell him how proud K was during the performance, and how much we want her to keep that feeling. K can tend to get lost in the crowd, and it's our job to help her find her place, and know that she's valued, loved, and understood.

I guess the moral of my story is, I don't force K to do anything she doesn't want to do, and, yes, like it or not, being autistic sometimes makes even the things she loves, hard. That's just reality.

Just her flavor of autism.

Just K.

She's In!!!!

I spent last night in the ER with a kidney stone (boulder?) A tiny little thing that made it feel like my left kidney, and everything below it, had paid $20,000 to be killed off on Game of Thrones. I had a real moment of wondering how much Vicodin is too much Vicodin.

After trying to save myself the $150 ER copay, I gave up around 2 am and drove myself to the hospital. It probably wasn't my brightest move, but I really didn't want to load the kids in the car, and mess up their schedule for today. Thankfully, since I showed up shaking, in excruciating pain, white as a ghost, and dehydrated, the ER staff took pity on me and I was immediately hooked up to good meds and hydration.

It still amazes me that something so small (I have yet to actually see a kidney stone with my own two eyes), can make me feel that bad. It is better than all the crazy alternatives my paranoid mind usually goes to when faced with that kind of pain, though.

I was sprung from the ER around 7, and was home around 8 (after stopping at the store for some Gatorade and Advil, because the answer to the Vicodin question is it just doesn't help this sort of pain at all, and the doctors don't send you home with the good stuff.)

The fact is, I've been under a boatload of stress, lately. K's school situation for next year, or lack thereof, has definitely taken it's toll. My auto-immune issues flare up, and I just get sick like it's my job.

This morning after returning home, and before crashing on the couch, I had a conversation with another school that was offering us a program that wasn't right for K. I drifted off to sleep upset, and not wanting to face the world.

Then something magical happened. A few hours after falling asleep, my phone rang. I immediately recognized the phone number as the one school we really wanted for K. The school that seemed like the light at the end of the tunnel for us. A place that could be life changing for K. The school that had already told us there wasn't a spot for her at this time, and had been the cause of me breaking down into sobs these past few weeks more times than I'd like to admit.

I almost didn't answer. I was just too tired and too sick to hear them tell me, definitively, it was over. There were no more "maybes" to be thrown out. I just didn't have it in me to hear that, or to cry anymore, so I almost let the call go to voice mail.

At the last second, I answered. I braced myself for more bad news, but instead I was greeted by an excited voice on the other end, telling me there was good news! They had a spot for K if we still wanted it.

If I could have jumped through the phone and hugged this man, I would have. I thanked him about 20 times too many, and could barely hold an intelligent, or intelligible, conversation. I was too excited, almost not believing this was happening.

I really cannot convey the weight that has been lifted. Or how incredible it feels to not have to trudge to programs we know aren't a good fit, but might be our only options. To finally feel like something is going our way! Especially after last night, we really needed this!

Hope (real, live, hope!) has been handed to us. To K. And you know what? We deserve it!

So now I can go back to my couch  nap and look forward to waking up, instead of being afraid of facing the world. That's a really good feeling.

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.