Monday, September 8, 2014

We Do Need To Talk About The Whys...

I'm just going to dive on in here...

When Kelli Stapleton tried to kill her daughter and herself, I was very black and white on the issue (I wrote some posts last September you can peruse, I won't link to them all individually.) Murder is murder, and every fiber of my being screamed at how wrong it all was. I felt no sympathy for Kelli. None. I wanted her in jail. I wanted her punished. I wanted an example to be made so that the public knew autism wasn't a reason for murder. I didn't want to talk about the "why's", because to me that felt like looking for an excuse as to why Kelli did what she did. Or finding a way to excuse what she did.

I was angry that the same people who railed against the murder of Alex Spourdalakis didn't react the same way to Issy's attempted murder. That because Kelli had a blog and was active on social media, somehow she mattered more than her daughter. We saw her side of the story, whereas with Alex we saw his. That the only reason people jumped up to defend Kelli was because people knew more about her than Issy, and if Alex's mother had blogged about her experience, instead of telling us about Alex, she would have fared better in the court of public opinion, too.

In all honesty, none of knows what really went on in the Stapleton home, or how Issy was treated. We never know the inner workings of a stranger's life (which is what we all really are, when we only meet online.) I was in the small minority of people who wasn't moved by the video Kelli put on her blog of Issy's violent meltdown, at least not in the way she wanted. I was upset that a mother would videotape her child at her most vulnerable, and seemingly egg on an attack to show the world. It rubbed me the wrong way from the beginning, and I admittedly hid from my timeline any mention of Kelli, thereafter.

I vehemently believed that parents should never come to the point of murdering their children because they just shouldn't. As though thinking that way is enough. It shouldn't happen, so there's no reason to try and understand any "whys", or figure out better ways to support families. Just don't kill your kid.

A year later, I still don't have any sympathy for Kelli. I have, however, tried to think about what happened by replacing Kelli and Issy with families I know. Women whom I respect and have treasured friendships with, if only online. What if one of them did the unspeakable? Reached the point where, for whatever reason, taking a life felt like the only option. Would I be as black and white? Would I not want to talk about the "whys"? Would I think that trying to make sure families don't reach this point was somehow excusing the act itself?

So, something changed. I realized that while I do not condone or understand what Kelli did, the truth is, families do reach this point. Wishing it didn't happen isn't helpful. Shutting down any conversation about how we can keep parents from reaching the point of no return only places more kids in danger. If I truly care about the other autistic children out there, and don't want to see headlines like this again, there does need to be a conversation about the "whys", and there does need to be a conversation about how to better help families. Having this conversation doesn't make the crime any less of a crime. It protects children like mine from being harmed when parents reach the end of their rope, with nowhere to turn, and services that they believe just won't work.

Something else that made me realize I needed to change my thinking happened when I posed a question/concern to an online autism group, recently. I found many families were struggling in a similar way, yet none had any idea what to do. No doctor or therapist had helped. No one had any answers or suggestions. We really are a community that is sadly lacking in support, and sees an unbelievable amount of money poured into researching how to prevent the diagnosis our children carry, but no money poured into helping the kids and adults already here. Our kids matter, and we as caretakers matter. We all deserve to be happy, healthy, and supported.

Murder is always wrong, on that I remain unchanged, but being unwilling to discuss ways to prevent this from happening again and again is also wrong. I wish I had the magic answer, but I don't. At least now I understand we have to ask questions and look for an answer, because not having this conversation means more kids will suffer like Alex and Issy, and that shouldn't be OK with anyone.

Thursday, August 7, 2014

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 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. 







Wednesday, June 25, 2014

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.

Monday, June 16, 2014

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.

Wednesday, May 14, 2014

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.


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.

Tuesday, April 1, 2014

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.

Sunday, March 30, 2014

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.

Friday, March 14, 2014

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.

Sunday, March 2, 2014

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.

Saturday, March 1, 2014

Best Friends

This week a new girl started in K's class.

That's right. A girl. 

Her own age.

Who shares common interests.

In all the programs we toured, we saw one girl K's age, but unfortunately that particular program wasn't a good fit. I would be lying if I said I didn't consider trying it out just so she could have a friend, though.

This new girl visited K's school twice, and I held my breath waiting to hear if she would become a student. When I received an email confirming her acceptance (the school sends up a heads up whenever a new child joins a class), I was elated.

When I had spoken to K about the possibility of this girl being in her class, she told me they would be best friends, and she would buy one of those best friend necklaces she saw at the mall. She was so earnest and matter-of-fact about it. Her innocence in how friendships are formed and kept is something I love about her, but the potential for heartbreak is not lost on me.

Yes, K and this new girl like some of the same things, like unicorns, and My Little Pony. But, this is also a special education school, and all kids come with a certain amount of trauma, or bad experiences, from previous placements. In her mind, K had already decided that they will be BFF's (best friends forever), and I hope she isn't disappointed. What she knows about friendship, in general, she has learned mostly from television shows. They are how she planned her first real sleepover, and they are how she has formed views on friendship. Mix those expectations with the expectation that everything will be immediate, and I worry what might happen. Especially if the new girl has a lot to work through, and isn't up for the instant BFF status K desires.

I am trying to stay positive, though. Even though these are two girls with a myriad of challenges, they absolutely can forge a path to true friendship. At the core, they are 10 year old girls (the new girl might be a year younger), and I always wants to have the same expectations I would for any 10 year old. Why not? Maybe things will look a bit different for them, but I respect my daughter enough to not baby her, or just assume things won't work out. I never want to underestimate anyone based on diagnosis, and I know there's always more than meets the eye. They both deserve to finally be accepted, feel safe, loved, and feel worthy of that BFF necklace.

Below are lyrics to a song I performed with 2 friends in an elementary school talent show :) 


Best friends should be together, 
That’s how it ought to be, 
So let’s pretend I’m part of you, 
And you are part of me. 

If I were a little shoe, 
I could be your heel, 
If I were a little pig, 
I could be your squeal. 

If I were a little peach, 
I could be the fuzz 
If I were a bumble bee, 
I could be your buzz. 

Best friends should be together, 
That’s how it ought to be, 
So let’s pretend I’m part of you, 
And you are part of me. 

If I were an elephant, 
I could be your trunk, 
If I were a chocolate cake, 
I would be a hunk. 

If I were a picture, 
I would be your frame, 
But if I were nothing, 
I’d like you just the same. 

Best friends should be together, 
That’s how it ought to be, 
So let’s pretend I’m part of you, 
And you are part of me. 

Friday, February 28, 2014

Here We Go Again...

This past Monday we had an appointment with a neurologist I waited 4 months to see. She is a doctor I saw speak at an Epilepsy conference last October, and who really seemed to get all the "side effects" of Epilepsy (behaviorally) that our current neurologist doesn't seem to know much about. Plus, she is head of her department, as opposed to the medical resident we've been assigned at our current practice, who is a wonderful person, just, you know, a medical resident. I wanted a second opinion with this woman. To know we are doing, and have done, everything we can in regards to B's seizures. I wanted to sit down and talk with someone experienced. I remember being at the conference, and a family spoke about how they had gone to several different neurologists when their son was first diagnosed. Over and over they were told they already had the best, and to stop looking. I wanted to see "the best", too.

In the end, though, I'm not sure it was worth the wait. She was different than I expected. Not as animated and social as she was at the conference. She told me B will probably outgrow his seizures, and acted as though we were wasting her time. Don't get me wrong, she was good with B, but I could tell that she didn't consider us one of the serious cases she is probably used to handling (which is probably why she spent the majority of the appointment talking to B about Minecraft and his other interests, instead of asking me about his seizures.) She said she'd follow us "if we wanted", with a shrug of the shoulders. To me, B's Epilepsy is serious, but I suppose because there is a chance he could one day be seizure free, we just weren't interesting enough.

She also brushed off my behavior concerns, and of course had to give her opinion on his Aspergers diagnosis. That even though we had a 6 hour neuropsych exam done through the autism center that is part of her hospital, she just thinks he's highly intelligent and "a boy". Even though she admitted that the neuropsych was very thorough, and even though I told her it was the school BCBA who really thought he had Aspergers and told us to get an evaluation, she wasn't convinced. She told me she'd have the psychologist who works with her take a look at his testing, see if she agreed or disagreed with the diagnosis.

It pissed me off.

We weren't there to discuss anything other than B's seizures. I certainly wasn't there for a 2nd opinion on his Aspergers diagnosis, especially when she isn't a neurologist who specializes in anything other than Epilepsy. I'm tired of every doctor and nurse we come across thinking I *want* their opinion on any diagnosis my kids carry. There's nothing I want less. 

At first, I tried convincing myself the appointment had gone really well, but once I was able to process everything, I realized just how much she brushed me off, and it really bothered me. Not because she wouldn't do anything differently, but because she seemed uninterested. Instead of taking time to discuss my concerns about the seizures, she spent most of the time challenging his diagnosis on the spectrum, or talking about topics unrelated to why we were there.

I really hoped I'd be seeing that passionate, caring, knowledgeable person I saw speak. I should have known better. Doctors who are department heads don't want cases like B's. Regardless of how scary his brand of Epilepsy is to me, cases like his don't peak the interest of a seasoned neurologist. B isn't a waste of time, though. He's a kid who had 6 tonic/clonic seizures over the course of 3 weeks, and whom I worry about every day. I want a doctor who gets that. And you know what? Our inexperienced medical resident does. She is always there to email, or call, and never makes me feel like I'm wasting her time, or that B's Epilepsy is no big deal.

She also doesn't question his Aspergers diagnosis, because, you know, she's met him, and knows it's not just "intelligence and boy". She also knows we see her for seizures, not autism.

I guess I've learned a valuable lesson: bedside manner, personality, those things can sometimes be way more important than how much experience a doctor has. It's important to see someone who isn't jaded, or just looking for the most severe case. Who thinks B is just as important as I do. Even if he one day does outgrow his seizures, it doesn't mean I don't worry now, especially since his type of seizures are the ones most associated with SUDEP. Excuse me if I don't brush his Epilepsy off, and skip along home.

So, we're sticking with our current neurologist. She's not "just" a medical resident, she's someone who cares about my kid, and knows he's worth her time.

Sunday, February 16, 2014

Ohana Means Family...

We went to Disney when K was in kindergarten. It awful trip. A lot went wrong, but the worst part was how much K didn't seem to enjoy being there. Even with the old disability pass (that is, the good one), it was rough. B, however, had a great time. I've often thought about taking a trip to Disney with just B. I always feel a twinge of guilt when I think about going without K, but I tell myself it's fine because she didn't like it, anyway. She'd be happier just staying at home with my husband, or another family member.

I've decided she'd have a much better time not going.

The thing is, K says she wants to go back. When we talk about Disney, she gets excited at the prospect of riding Small World 14,000 times (in a row.) However, spending thousands of dollars to ride Small World just seems ridiculous to me. Again, I tell myself she'd have a better time staying back, and that B deserves a vacation that isn't run by his sister.

I've never been able to fully convince myself of this, though, and while watching Lilo and Stitch tonight, I found the perfect way to explain it:

Ohana means family, and family means nobody gets left behind. 

Hearing that little catchphrase really drove it home. The trickle of guilt I usually feel when thinking about planning a vacation without K, turned into a waterfall of guilt.

I've decided that K would be better off not going, regardless of what she's told me. I've told myself the rest of us deserve a trip where we don't have to be ready to pull the ripcord at a moments notice.

It's shameful, I know.

We are a family. Period. Leaving out one member to make things "easier" just isn't OK. No matter how I try to rationalize it, and no matter how many other parents tell me they've done it without regret.

I know it's not uncommon in the autism community to do things as a family without the affected family member. To validate those decisions by saying it's better for the child (or a sibling.) If I'm honest with myself, I know K wouldn't feel good about being left at home. I'm sure even the most affected individual notices when everyone leaves without him/her. I want both my children to know they are always welcome.

Teaching my kids that we unconditionally support them will make B a better man, and K a more confident woman. Not hiding my child away shows the world that everyone has worth, and our kids really are different, not less. 

So, that's my new mantra. I'm sure Disney won't mind if I borrow it, right? (They'll totally mind, so, shhhh!)

Ohana means family, and family means nobody gets left behind. 

Quality time with my girl. 

Wednesday, February 12, 2014


I'm in a blogging slump. I remember a few years ago, I couldn't blog enough. Sometimes I would write several blogs/day, and have trouble not publishing them all at once. Now, I feel like I really have to sit down and think about something to say.

I really believe it's because the kids are older. I don't have to blog every single thing that happens, because we are kinda just living life. I know I could write about K's progress and experiences, but I almost feel bad acting excited about those things. I don't want my expectations to be so low that even the most mundane things bring tears to my eyes. I want to give her more credit than that. She's getting older and I want to treat her like I would any other 10 year old, and that means treating her, well, like any other 10 year old. One thing I do not do is infantilize my kids. Autism or not. Not even for a good blog post.

And, really, how many times can I blog about my worries over B's seizures before it gets tiresome? Plus, the stuff I really want to blog about (anything having to do with school), is off limits after the fiasco last year. It pains me not to be totally open and honest on the blog, but since Big Brother is watching, I don't have a choice (it is funny how I read other blogs where the authors are SO specific about their school situations, and nothing happens, and I can't even allude to it anonymously...but, I have to keep the peace.)

Sure, there are times we really struggle, but I don't feel comfortable getting into all the gory details. Don't mistake my writer's block for a boring life, it's just hard to pick and choose what to talk about these days. What my kids would want to read someday, since once it's out there, it's out there.

I hate to think I would ever stop blogging, since it's such an outlet for me. It's just hard when your kids reach a certain age to figure out where you are going, and what people are interested in hearing. Where your story ends, and your children's begins...the part that isn't yours to tell.

So, yeah, that's why I haven't been blogging a lot lately, although I have been trying to be more active on my Facebook page, so if you haven't liked that already, it might be a good idea to do that NOW.

I do think we have a lot of transitions and changes upcoming, so maybe I'll be awash in stories once again...for now, Facebook might just be the place to be.

Wednesday, January 29, 2014


K's birthday came and went. She was excited for double digits, although sad she would no longer be nine. Each year she cries a little, missing the age she was before. The epitome of not liking change. At least 10 is special. She had a fabulous (and I mean, fabulous) birthday party, complete with a man who brought all her favorite animals, a My Little Pony cake, and a sleepover with a couple friends. Her first real sleepover. Something she's seen on TV, and something she desperately wanted. Make-up. Nail polish. Snacks. Hanging out in our playroom, sans annoying parents. I am pretty sure there was a My Little Pony episode she used to plan the event (not kidding.)

K thought the day was perfect. The sleepover, perfect. I chose girls who are nice to K, and ones I knew wouldn't cause tween drama. Sure, there were times K was off doing her own thing, but there were also times she was totally engaged with her friends, as they slathered on pounds of make-up, or watched TV. The next morning she happily sat and did Shrinky Dinks with one of them. K declared it her best birthday, ever, and it was. She was happy, like really happy, which is something I don't often see.

Of course, I had a more difficult time with her turning double digits. Eight years until 18, kept going through my head. Where are we? Where are we going? How will we get there?

She's still young, people tell me. She is, but these past 10 years have flown by, and we are still gasping for air at times.

She's doing so well, people tell me. Except, they don't see when she's not doing well, and I am not one to overshare.

We have 8 short years until she's 18. We have puberty. We have the hardest years of a kid's life ahead of us, and it scares me. I know I'm supposed to be positive all the time, but the older K gets, the easier it is to let doubt take hold. There are so many things K wants out of life, things she wants, but the way she is wired makes her path so hard. It just does. I know there are some who don't want to hear that, but it's the truth.

We recently had some new testing done, and it makes me sad. Let's just say, being treated a certain way, and basically traumatized by certain people (you can guess where this all happened), have killed any ability she has to cope. She has so much potential, but reaching it? Not easy. Finding good school placements? Not easy. Having faith it will all be OK? Not easy.

I know these tests don't define K. I know they aren't always accurate. What the psychologist saw was a true representation of K, though, beyond academic skills, which can wax and wane. Beyond any box she checked off, or circle she filled in. She saw K as a person, as we see her, and that part is the most important. It's what gives us the most accurate information.

Her doctor said K was one of the hardest kids she's tested. Heck, they didn't even finish all the tests. So, she's a kid you might look at and say is high functioning, but she doesn't function highly at all.

I shouldn't be sad, but I am. I can't help it. I'm a mom, it's what we do. I desperately want K to be accepted and loved and given a chance. I will always fight for that. Unfortunately, we don't live in a perfect world ready to love and accept and give kids like K a chance. We don't live in a world where it's easy to be different.

I do need to live in a world where my my kid is happy and fulfilled, though, and even that, right
now, is hard to imagine.

I wish everyday could be like her birthday. Where she was excited and happy and unconditionally loved by everyone around her. I wish I looked at 10 the same, innocent way, she does. The one thing that gets me through is reading blogs by those who are young and autistic (Autism Speaks debate, aside.) Yes, we only have 8 years, but we also have 8 whole years. There's hope, and I just need to focus on that.

10 is magical to my girl. I hope I can see the magic, too. For now, I'll just sit here and relive that perfect day.



Friday, January 24, 2014

What We Need to See

There was a blog post that made the rounds yesterday. I saw it several times on Facebook, but I didn't read it until this morning. The first few lines of the post showed up whenever the blog was shared, and I almost shrugged it off because I saw the word "apraxic". In my ignorance, I decided the post wouldn't apply to our lives, since apraxia is not a diagnosis either child carries. (Apraxia is a separate disorder from autism, and is what makes a person "non-verbal". You don't need to be autistic to be apraxic, and you don't need to be apraxic to be autistic.)

You can go read the post HERE.

As I began to read, it hit me. Hard. This blog post was so much of K's life. No, K isn't non-verbal, but she also isn't able to fully tell people when she needs something. Really needs something. Things like a break, quiet, or people to just stop throwing words at her when she isn't able to process it all.

It reminded me of a dance class last fall. K was struggling. Just having a really hard time. Because K is a verbal kid, and because there are a lot of things she can do, even I sometimes expect too much. In the middle of class, K stopped wanting to participate, started to cry, and tried to leave the studio. At the same time, her classmates were cheering her on, chanting her name, and trying to get her to join with them.

I stood there feeling aggravated. Why wouldn't she just go to them? They were cheering for her! They wanted her to join their circle! This was all positive, right? So why was she standing there, on the verge of a meltdown?

I just didn't get it. I was looking at it through my own eyes. My own, non-autistic eyes. A group of people cheering someone on? How could that be a bad thing?! I was angry. I just couldn't understand. I allowed my own feelings of embarrassment get the best of me.

It wasn't about me, it was about K. How she was feeling. How everything sounded and felt to her. How she needed someone to just get, in that moment, that she wasn't being a bad kid.

She was already overwhelmed, standing inside an echoey dance studio, bombarded by words. The loud demands of others. To K, their voices must have equaled a thunderous roar. One that upped her anxiety, and made the tears come faster.

Maybe their cheers made her feel worse about needing a break. Maybe she felt embarrassed that all eyes were on her, when she just needed some time alone. Maybe the whole situation, as positive as it looked from the outside, made her feel even more different, in a place where her differences shouldn't have mattered.

What she needed was to be told it was OK to get away for a while. For me to take her somewhere quiet, and not make it seem like a bad thing.

I didn't look at the situation through K's eyes. I didn't respect my own child. Yes, she's verbal, but in those moments, words fail. I didn't realize until reading that blog post just how much I had failed that day, as well.

I thought I couldn't learn from someone whose experience seemed so different than ours, but I was wrong. Our kids are more alike than we know, and trying so hard to separate "levels" of autism means we are probably missing out on a whole lot of information our kids need us to hear.

Lesson learned.

Tuesday, January 21, 2014

The Perfect School

Today K and I made a list of things she'd want (or not want) in her perfect school. Though we love the school she is in now, it isn't long term (which we always knew.) She needs to be challenged more academically, and definitely needs more social opportunities (right now she is 1 or 2 students in her class.) This school has done a lot for her, mental-health-wise, and for that we are eternally grateful, but at some point we'll have to find a new placement.

So, today, while we were getting in some afternoon snuggles, we decided to make this list. Actually, I asked her if she wanted to make a list of wants and don't wants, and she agreed. We make so many decisions for our kids, I wanted to make sure K is represented in whatever we choose to do down the road. Some of her answers I prompted, knowing what she loves about her current school/misses about her old school. Some of her answers she gave without any prompting at all. I think the most important answer was no restraints. This was 100% her, no prompting needed.

So, here is K's list. Short, sweet, and oh-so important:


A class pet
Nice teachers
Good food
Culinary arts
closer to home

Don't wants:

Homework (she hasn't had that in her previous two placements, anyway.)

One of the things K loves most about her current placement is the culinary arts program, so I am really hoping we're able to find another school that offers that. She loves using the iPad for all her schoolwork, too. The fact that physically writing is such a challenge for her, and can get in the way of her overall performance, an iPad, or laptop, is definitely something we need to make happen.

The class pet? This might trump everything else on the list, but is probably the hardest thing to find. Especially as she gets older. We toured a few different schools, and class parts are few and far between. I'm sure K could convince a teacher it's something absolutely necessary, though ;)

And girls. Well, we are realistic about this one. If we could find a school with even one other girl K's age, we'd consider it a win!

Nice teachers, good food (in the cafeteria), and art class are all things that will hopefully be easier to find. As far as distance from home? Well, we live in the boonies, so nothing is going to be close. One can always hope, though!

As soon as we started making the list, K said something she wanted was "no restraints". Actually, what she said was she didn't want "that thing at the other school", and I immediately knew to what she was referring. It's sad that has to be on the list at all. That in this day and age educators can't come up with a better way, or have enough respect for our kids that restraints and seclusion aren't even on the table.

But, alas...

A school's policy on restraints/seclusion is something that will be immensely important moving forward, though.

As for homework? Most of the programs don't have homework, but that isn't a given. Being that we needed a tutor specifically for homework when K was mainstreamed, I wouldn't mind no homework either. It caused a lot of unneeded anxiety and behaviors in our house, and I personally don't think homework is necessary, for any kid. Reading at home should be the only homework a kid gets.

K considers anyone she doesn't get along with a "bully", so this is a hard one ;)

I am hoping that K's next placement is the school she will be in for the long haul. It would be amazing if we could find a program that could get her through high school, even, though I know that's a tall order. I just don't want her changing programs every couple years. Hopefully we can take some of her wants (and don't wants!) and find a program that will work for her. There is no perfect school, but I want to make sure that K has a voice in whatever we choose.

Monday, January 20, 2014

Don't Die. Or, It's Time to Take Care of Ourselves.

After the whole, I think I'm dying, incident, it really hit home how important it is that I, you know, make doctors appointments for myself, and get my stress level under control. First stop was the GI doctor. I mostly made the appointment because, since I don't chew my food like an adult, I swallowed a piece of crusty bread that basically cut it's way down my esophagus, into my stomach. After a week of pain, I decided that I should consult with an actual physician, since images of said crusty bread turning into a giant, festering, wound, danced in my head.

Turns out, I wasn't so far off.

After speaking to the doctor, she recommended I get an endoscopy. I have a history of reflux, and other fabulous stomach issues, especially since having kid #2. I'm not a fan of anything medical, especially when I have to be sedated/put under, but I put on my big girl panties and kept the appointment. I am OK with making appointments, it's the keeping them part at which I do not excel.

So, long story short (sidebar: waking up during an endoscopy is horrible and painful and next time I will make sure they know to drug me up good), it was discovered that I have "multiple stomach ulcers".

I guess all those jokes I made last year, about our fight with the school slowly killing me, were not all wrong. That and other things have left me with, I believe, 3 beautiful ulcers. Three. Not one. Not two.


I was instructed to basically never take ibuprofen again, and up my Prilosec to twice a day. I actually didn't remember about the Prilosec until yesterday, because they give you this information while you are still mostly drugged up, not thinking it important to maybe send you home with any written instructions.

I have a follow up with GI, but not until the end of February. It was an appointment I made before the endoscopy, but I am sure if they want me in sooner, they will let me know. There's really not much to be done for ulcers, besides avoiding certain meds, and probably easing up on the Franks Red Hot. I just have to take my Prilosec and hope things heal.

Of course, now I am basically afraid of all food. Every since the bread incident, I've had pain every time I eat (and sometimes when I'm not eating), and now that I know there is actually something wrong, well, all food seems like the enemy. I am guessing maybe the bread attack angered the ulcers, as I never had pain before that, or else it's all just a big coincidence. Who knows. The whole situation just stinks, basically.

Oh, did I mention that on the way to my endoscopy, probably two whole minutes (or less) from the hospital, we were rear-ended? Yep. As though my nerves weren't already shot, some college kid decided braking wasn't a mandatory thing, and slammed into us as we were stopped so the person in front of us could turn. SO, the same bumper we just had replaced last August because of a similar accident, now has to be fixed again.

Anyhow, moral of the story? Take care of yourself. Making sure you are healthy needs to be a priority. I'm not telling you to take a vacation, or go get a pedicure, because, I get it, there's not always time (or money) for those types of luxuries. I'm telling you make sure you are around for your kids for as long as possible. That's what's important.

So, join me on the year of actually going to the doctor. Don't let your one stomach ulcer become three.

Sunday, January 19, 2014

Sad Face

July 31st and Aug 19th are two dates that are burned into my memory forever. They are the the dates of B's first seizure, and of his last. Well, his last so far, as much as I hate to qualify it like that. The last one before he was admitted and given giant doses of Depakote, after experiencing 3 Grand Mal seizures over the course of 5 hours. 

July 31st is also the last morning he woke up in his own room. Excessive Googling, and finding out there is something called SUDEP, which is basically SIDS for people with Epilepsy, brought him into our bed, and won't allow him to leave. 

I won't allow him to leave. 

Last night, as my husband, B, and I were vying for room in our bed (alongside our 65 lb dog), B started crying and told us he just wanted to sleep in his own room. He said it a few times, frustrated and teary-eyed, and only one word escaped my mouth. 


When my kids sleep in our bed, I wake up at the slightest movement. It's a good thing when you want to know if your kid starts seizing beside you, and a bad thing if you ever want to feel well rested. I just can't bring myself to let B sleep in his own room again, alone, because what if...

What if? 

There are (expensive) seizure monitors on the market, and I honestly thought we'd have one by now. Mostly because my husband isn't a fan of sharing bed space with a child who rarely stops moving all night. But, it's a lot of money, and easier to just keep B in our bed. Even with a monitor, I don't trust anything as much as I trust myself. I wouldn't feel comfortable without B beside me at night. I like having him close, within my reach.  

But, he's 7, and the novelty of sleeping in our bed has worn off for him. It's been a long time since he's spent a night in his own room, and he's always been a kid who preferred his own bed over sharing one with us. Even as an infant, when I wanted to co-sleep, he preferred his crib. We actually moved his crib into our room so he would still be with us, even though he didn't share our bed (yes, we were those crazy AP parents.) 

But moving his bed into our room now just isn't an option, and, yes, would be over the top. I just don't know how to let go, or ever feel comfortable letting him sleep alone. Even if we did have a $600 seizure monitor hooked up to his bed, it's not the same as having him with me. I know he can't sleep with us forever, but, well, I want him to sleep with us forever. 

I am not sure what to do. I hate that B is so upset over having to stay in our room. I know how much he loves his own bedroom, and I know he doesn't understand why I'm scared to let him sleep alone (nor do I want to share my reasons, because he doesn't need to worry about such things.) 

I know B hasn't had a visible seizure since August 19th, but that means nothing to a worried mother. Nothing. It also doesn't mean he won't ever have one again, especially if he has a growth spurt, or gets sick, or anything else happens that makes his medication a bit less effective. It also doesn't mean he can't have a random breakthrough event. Epilepsy is a mystery. We have no idea why B started having seizures, and not having a cause just makes it a lot scarier. For me, at least. 

Seeing your child have a Grand Mal seizure is not something I would wish on my worst enemy. Those scenes are with me forever, as is the feeling I had the first time, when I honestly thought B was dying. It's nothing like you see on TV. It's 1000 times worse. It's not comforting when the doctors tell you they can't pinpoint where the seizures are starting, and that they seem to be coming from everywhere. It's not comforting to know your child's medication might soon be changing, because of how it's affecting his organs. I can barely send B to school without a panic attack, so imagine how difficult it is for me to even think about letting him sleep alone. 

I know B deserves a normal life. I know he should be able to sleep in his own bed. I don't want him to be sad, or feel different, and I wish my anxieties didn't get the best of me. It's just a scary thing, letting go. I need to find a way to do it so that we are both happy, or else I'll just end up sleeping in his tiny, Ikea bed with him, and that's not ideal, either. 

Saturday, January 18, 2014

The Middle

I don't believe vaccines cause autism, but I also don't consider autism a gift. I fall somewhere in the middle. A place where killing your autistic child is always, without excuse, WRONG, and a place where trying to force all parents to believe that autism is just a difference in neurology is also wrong. I sit in this middle chunk of belief, where hate doesn't exist, because these are our kids, and it just can't, but where the struggles are real. For both parent and child (I know, I know, parents don't matter, except they do.)

Sometimes I find myself skating the thin line between two extremes. Mostly because I have friends on both sides. People I love and admire, even if we don't always agree. Sometimes when I speak up about my own beliefs, I end up feeling guilty, because I truly never want to offend anyone. I hate thinking people are angry with me, to a fault.

However, because I try to avoid taking a side on some things, or immediately try to soothe someone I offend, I lose my own voice in the process. I've realized that as much as I try to appease those around me, this action isn't always reciprocal. If someone doesn't care about losing me as a friend, why should I bend over backwards keeping them happy? Because, honestly, when you're the only one trying to keep the peace, well, jokes on you, right?

Of course, there are things from which I don't back down, even now. Murder. Restraints/Seclusion. Abusive therapies. I just need to learn how not to back down on everything I believe. If I lose friends, I lose friends, but hopefully I'll gain respect, too. And confidence in myself.

Wednesday, January 15, 2014

Not Sorry

I've been blogging since K was a baby. At first, I was just a typical mommy blogger. I chronicled our daily trips to Target, playdates, and other inane things. I had no "cause" at the time, and so it served as a way to keep family updated when we lived in another state. After K was diagnosed, it slowly turned into an autism blog. I discovered Twitter, met a lot of other parents, and started blogging about life with an autistic child.

It was rough in the beginning. I wanted any other life but the one I'd been handed. I wanted a cure. I wanted my dreams back. I can't say I'm proud of the blogs I wrote those first few years, but I don't really regret them. They were my truth at the time. My blog connected me to a lot of fabulous people, with whom I developed good friendships even though we never physically met.

I won't lie. It was nice to commiserate with other parents about my daily struggles. To know I wasn't alone. To have a support system, when I felt like I was falling into the deep, dark pit. I was desperately trying to find my footing in this new, unexpected life, and social media helped.

From the beginning, I befriended other parents who weren't exactly like me. Who tried autism therapies and treatments that I did not. There was a time we were thisclose to going down the chelation road, but I read about a child dying from it, and quickly crossed it off our list. I knew there was a whole world of "stuff" out there, when it came to autism, and unless someone was downright abusing their kid, someone having a different path than us never bothered me.

We never did GFCF, but I had many friends who did. We never saw a DAN doctor, mostly because of the cost, and me wanting a "for sure" cure before going broke. But I knew people who said these types of treatments really helped their kids, and who was I to discount that (and because of B's medical issues, biomedical treatments are something I have thought about recently. Who doesn't want to ease their child's physical symptoms, related to autism or not?)

I knew people who did ABA and Floortime. Those who homeschooled, public schooled, and private schooled. I knew people who saw autism as a gift, and those who saw it as a curse. But I also saw parents as more than that. More than just their autism treatment plan. As people who listened, who cared, who were good friends. Their particular belief system didn't have to match up with mine in order for us to have a relationship.

For me, however, there are some things I just can't abide. There is a line I draw that separates parents trying to do right by their kids, and parents harming their kids. Certain treatments that can only be viewed as abusive, at least in my own mind. I think we all have that invisible line, that point where we shift in our seats and get uncomfortable. When we hear about a treatment where the risks seem to outweigh any benefit. Things tried by desperate parents, who will believe any snake oil salesman that comes along.

I get the desperation. I was there once, myself. But, I can't get behind blindly following someone who claims they can cure your child, without doing any actual research, or stopping to think if death is a side effect you can accept. And, obviously, murder is something for which I will never make an excuse. But I've made that clear on this blog before.

So there's a line, but up until that line I don't really care what you do. As long as you aren't harming your child, based on my personal opinion of harm, we can be friends. Unfortunately, this isn't true for everyone. I learned this lesson recently when I came up on the receiving end of the "blocked" function on Facebook.

Honestly, I am surprised I am not blocked more often. I don't mind giving my opinions on social media, or this blog, and that means there is always someone who might get offended. Someone who doesn't agree with me on a particular issue, and not being able to move past it hits the block button without a second thought.

But, even I don't block people, because if I blocked everyone I don't agree with (due to religious views, political views, or autism views), I would have very few, if any, friends. I always joke about how controversy is never ending on my personal Facebook page, but that's only because I have a diverse group of friends...who like to fight with one another. But what's life without diversity, right?

But, getting back to my point, there are some who unfortunately cannot handle when someone disagrees with them. I think that when you post something on Twitter or Facebook, or write a blog, you need to understand there will be those with different opinions. Being active on the internet means having a thick skin, especially if you are trying to parlay your internet presence into a career (I am not, and there are times my skin is very thin, but then blogging isn't my life/job, so it's not a big deal.)

I guess it just shocks me when someone decides they can only surround themselves with those who believe exactly as they do...about anything. Some of my closest friends differ in their opinions on autism (and many other things), but that's OK, because I see them for who they are...good people who have impacted my life in a positive way. Whose children I cheer for when they succeed. Whose shoulders I cry on when life gets rough. Whose friendships I value, even though we aren't the same person.

Life is too short and too precious. We are never going to agree on everything, no special needs community ever will, but we must be there for one another. Sure, we all have that line in the sand, but I think it's important to examine where that line rests. The last thing we need is another reason to fight.

So, am I sorry I got blocked? No. My true friends accept me for me, and understand we can be friends without being on the exact same page. For them, I am truly grateful.

Thursday, January 9, 2014

Target, Ambulance, Anxiety, OH MY!

So, last weekend was...interesting.

I'm just getting around to blogging because it has taken me this long to finally feel like myself. And to believe that, OK, I'm probably not at death's door.

Saturday started out normally. K was going to sleep over my mom's house, so B and I planned a special night together. By special I mean we went to Pizza Hut, after I convinced him that, yes, Pizza Hut pizza and Target cafe pizza are one in the same. He had a Book It! award to use, though I had to promise that we would immediately go to Target if, in fact, the pizza was not the same.

I don't love Pizza Hut, but when asked to choose any restaurant he wants for dinner, B will answer one of two things: McDonald's or Target. Forget eating real food, he will only be happy at these two places. So off we went.

Dinner was fine. The place was pretty empty since no one actually dines in at the Hut. Ben was very happy to find his meal of bread sticks and pizza were as expected, and I was having a good time hanging with my kid, and listening to his stories. We had plans to actually hit up Target after dinner, so he could return a Christmas gift and choose something new (let's just say Transformers Construct-a-Bots are not as fun as they look.)

On the way to Target my stomach started bothering me, but, you know Pizza Hut, so I really wasn't concerned. We returned the Transformers, looked through the Dollar Spot (where B chose 2 "grabbers"), and headed to the toy section. After a few minutes there, I started to feel weird. I can't really describe the feeling. At first I thought I was just tired, but then I got really hot and felt like I was going to throw up and/or pass out.

Passing out in public is not an option for me, so I told B there was an emergency and we had to go to the restroom. Thankfully he put down the toy he was looking at, and didn't argue. I figured I'd sit down for a few minutes and feel better. I had probably gotten overheated, and a little dehydrated, and just needed to rest.

Unfortunately, I didn't feel better. We abandoned our cart (B was very concerned about this), and headed to the car. As soon as we got there, I started feeling really bad. My heart was racing, I felt incredibly lightheaded, and my upper back started to hurt. I called the husband and asked him to please come pick me up, because I didn't feel safe driving home. I wasn't sure what was wrong, but thought maybe the dreaded Norovirus was upon me, since I heard that can hit you pretty hard just 8 hours after you're exposed.

After about 10 minutes I started getting scared. My back was killing me, and I was convinced I was having a heart attack. I've felt faint before, but never like this. I felt like I was slipping away. That if I closed my eyes, I'd never wake up. Like I was dying. Obviously, I've never died, so I can't say what dying feels like, but I imagine pretty close to this. I called my husband back and told him to hurry, and that I was thinking about calling 911. Then a few minutes later I called back to tell him I was calling 911.

I was scared to death I was going to die right then and there, with  my 7 year old in the car, in the parking lot of Target. My whole body started to feel numb, and I thought my heart would beat right out of my chest. I sat there taking deep breaths, willing myself to stay awake. Finally my husband arrived, and what seemed like years later, so did the paramedics.

The paramedics...well, they needed some sensitivity training. I understand I am 36, and not morbidly obese, so maybe I don't look like someone who would have anything serious wrong with her, but I sure felt like I did. Not wanting to take me to the hospital when I am thisclose to passing out, my heart rate is 140,  I have squeezing back and chest pain, and can't breathe, is not OK. They seriously just wanted to sit in the parking lot and decide if I really needed to go. I told them the hospital I wanted to be taken to, and they acted surprised, as though I was going to just hop out of the ambulance, totally fine, if we just sat there a few minutes.

Now, maybe that happens. I don't know. But I was scared, and in pain. It took forever to get to the ER, as they didn't use their lights. It's awesome feeling like you're knocking on heaven's door, while the paramedics look at you like you're a headcase. At one point the guy in the back with me suggested that maybe I just pulled a back muscle. I immediately regretted calling 911, and wished I had stuck to my plan of just having my husband drive me to the ER. We would have gotten there faster, anyway.

But, whatever, I guess being compassionate was above their pay grade.

Long story short, after several hours in the ER, I didn't really get any answers, except maybe a kidney stone they found on the CT scan somehow triggered this whole reaction. I told them I doubted it, as I have kidney stones a lot, and the pain I was having wasn't in that area (plus the stone was really low.) They did a chest X-ray, and a lot of blood tests, which thankfully came back fine. Of course, not before the doctor came in and asked me if I'd ever heard of a bunch of different diseases, and mentioned sometimes if you have cancer, the tumor can throw a clot and cause you to feel similar to how I was feeling. So, that was awesome. I kept getting waves of dizziness and nausea, as well as a heart rate that refused to drop below 135, but the doctor decided I was fine to leave with some Ativan and a prescription to help move the kidney stone along.

I've never taken Ativan, or any anti-anxiety drug, and it wasn't what I imagined. I still felt anxious, but my body couldn't physically react to it. They gave me a dose in the ER before I went home, and at least my heart rate went down to 112, I guess. Good enough for a discharge.

I really have no clue what happened that night. It took me a few days to feel better, with today being the first day I felt like myself. I think I might have gotten really dehydrated (brown urine, anyone?), which triggered me feeling lightheaded and sick, and then maybe the anxiety kicked it all up a notch. Who knows. At least I know I'm not dying of (insert random diseases ER doctor threw out), and I didn't have a real cardiac event. I just know I never want to feel that way again.

I am taking it as a sign that my body needs a break, though, and that I need to take care of myself better. It's too easy to get caught up in the kids, and your spouse, and everyday life, that you forget to check if you're running on empty. Feeling like you're dying (even when you're not) is scary as hell. I realized I need to be healthy for my kids. Taking care of myself is probably one of the best things I can do for K and B, and Saturday night really drove that point home.

I don't do resolutions, but 2014 has to be the year I really start taking care of myself. Making that doctor's appointment. Eating better. Managing my own anxiety. My kids need me, and I want to be there to see them grow up. Even if I am the headcase the paramedics seemed to think I was, I'm the only headcase my kid's have.

Thursday, January 2, 2014

It's OK to Have a Bad Day

Lately, I've been trying really hard to find the silver lining in everything. I tend to be a glass half empty person, just by nature, and so I work hard to see the positive side of things. A lot of the time it's easy. A lot of the time, since I don't allow myself to be felled by something not going the way I imagined, I am able to find the good in our Plan B. Or just letting go of all expectations and finding something that makes my girl happy. I was able to do that Monday when we took a trip to the aquarium, and K literally lasted 2 minutes. We are talking she walked in the door, and then back out. I left B with the husband and my sister-in-law, and K and I trekked over to a nearby (almost deserted) carousel, where she could ride to her heart's content, and come back from the brink.

Was the plan to spend some family time at the aquarium? Yep. Did I care that K and I had to make a quick escape? Nope!

That time away allowed us to return to the aquarium (which had thankfully gotten LESS crowded after our carousel trip and snack stop), and K had no issues.

                                                It's fun to try and open all the touchscreen things at once!
 Eskimo kissing a baby seal on the screen. Almost too much cute.

She was having fun, and was happy. B was having fun, and was happy. All that matters!

We even all went back to the carousel after, for a couple more rides.

But then Tuesday happened.

K had been asking to go ice skating for a while, so we decided to go New Years Eve day. Now, I am not a skater. My feet hurt almost immediately upon putting them in skates, and I am not known to be the most coordinated person. Still, the kids were excited, so we all went.

At first things were OK. K was having a bit of a difficult time, and falling a lot, but was handling it well.

When things were still OK. 

B was a speed demon with his crate.
A speed demon who didn't exactly look where he was going ;)
When K was done, she was D-O-N-E. She wanted to leave the rink, but I told her she had to wait a second so I could tell daddy we were leaving the area. That request didn't go over well. To make a long story short, there was some scary bolting, some of me running outside wearing only socks, and a massive meltdown (K on the outside, me on the inside.)

I was pretty mortified. I know we're supposed to take it all in stride, and not let "the staring" get to us. I know we are supposed to be OK when things downhill, because our kids are autistic, and they aren't doing anything on purpose (K has told me through tears, before, that she can't control her body".) I know I should have stayed perfectly calm while trying to tear off my rental skates to chase after my kid, and I know I shouldn't have allowed myself to get angry as she stood there screaming at me.

I mean, that's what perfect parents do, right? At least that's what I'm told.

Well, I'm not perfect, so there was panic, and embarrassment, and anger, and me gathering our things to wait in the car until the rest of our party was done skating. There was me telling K I couldn't talk to her right then because I needed to cool off. There was me not being able to find any silver lining, and just wanting to go home and hide under the covers.

And of course I felt guilty. I did pretty much everything "wrong". I know there are some who wouldn't hold back on their attacks towards me because of the choices I made in the moment. I'm sure there's even one or two who would say I did some deep seated damage to my child's psyche. Trust me, those things don't even come close to plain old mama guilt.

It was just a bad day.


We're allowed bad days. They happen. Whether your have a child with special needs or not. Sometimes there just isn't a silver lining, and no way to salvage what happened. Sometimes everything goes wrong, and the day just sucks.

It doesn't make us bad parents. Not in the least. We love our kids. We are great parents to our kids. We are also human. Having an autistic child doesn't give you superpowers. Sorry.

So, there it is. The honest truth. Sometimes you just have to pack it in and remember tomorrow is another day. And that's OK.