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 Regardless of how withdrawn K becomes.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.

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.

But...

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.

My Child is a Victim of Your Fear-Mongering

Yesterday I read a few blog posts that featured kids talking about what being autistic means to them. They were positive in their descriptions, and readers ate it up. I wanted so badly to participate, but I didn't. Not because K is unable to do an interview, but because I knew it wouldn't garner the same results. 

I knew K would probably describe autism as a bad thing. 

I didn't want to write about it, but an email from a friend made me realize that it was something I had to share. Something a lot of us are dealing with, due to forces beyond our control. Because we can't be with our children every second, protecting them. I've talked a lot about how viewing autism in such a negative way can affect those living with the disorder, but what better way to really show you than to relate it to my own child. 

Since K was 3 (maybe before), she has had some incredibly negative experiences. She was treated poorly by those she (should have) trusted most. People who didn't try to understand and accept her, but instead punished and ignored her. Being aware that you are different can be a curse when those differences are pointed out as your greatest weaknesses. When every therapy you attend is meant to change the person you are, because the person you are is broken. You can only do so much as a parent. The truth is, when a child is attacked from all sides, when she doesn't feel comfortable anywhere, those experiences set in deeper than anything you say as a mom. 

And that kills me.

I have seen firsthand what happens when autism is viewed as something that must be eliminated at all costs. When a child is viewed as a drain on resources. As a difficult kid, who needs to learn how to be like everyone else. Who is told what to say and how to act, because what comes naturally just isn't right. I've tried to put myself in K's shoes, and it's so, so hard. I can't imagine what it must be like to constantly pretend to be a certain way in order to gain approval. In order to be rewarded. In order to stay safe. 

I am out there screaming from the rooftops that the way we view autism needs to change, because I see how the way we view autism now hurts my kid. So, no, I am not naive to believe things could be different. I am not living in some magical world where autism is wonderful, and my child is adored for her differences. I am living in a world where my child has been beaten down because she is unable to pass, and I am scared where this path will lead as she gets older. 

I don't want K to hate herself. I don't want her thinking that being autistic means she's a bad kid, or someone unworthy of love, acceptance, or happiness. My child understands there are those who don't like her because of how she behaves, how she thinks, or the way her body can betray her. Sure, we have moved mountains to change her environment. I've changed my own opinions about autism when I saw what was happening to my kid. When I stepped back and stopped focusing on me, and started focusing on K.

But, a lot of damage was already done. It will take time for that to heal. I will work tirelessly to make sure she finds a way to be self-confident. That she knows she is the wonderful, beautiful, smart, worthy-of-all-good-things in life, person I see. And that she knows being autistic isn't something to hate, or something to be hated for. 

So there will be no cute or profound interview here. Not yet. But, I'm working on it. I just wanted you to know that people are affected by the messages of fear tossed out to illicit donations and pity. By those only seeking a cure for this epidemic called autism. By the way society treats autistic individuals, because some need to spread intense negativity at every turn. 

I know because my almost 10 year old has suffered for it. And it needs to stop. Now. 

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

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

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

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

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

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

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

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

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

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

You're Missing Out...

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

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

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

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

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

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

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

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

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

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

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

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

With Them, I am Truly Happy.

I read a blog post recently that rubbed me the wrong way. Maybe it was just the way I read it, since everyone else seemed to love it. It made me angry, though. And sad. Sad for the child on the other end of the blog.

If there's one thing I want people to know, it's that they should never, ever feel bad for me. My children are not a constant source of pain. Their mere existence doesn't make life hard. I don't want to switch lives with someone else, just to escape raising children with special needs. Being around them doesn't drain me of energy, making it hard to breathe.

Life is hard for everyone. Not just those whose children have special needs. Everyone. What we all search for are the good things in life that bring us joy. That fill our hearts. That make us look forward to waking up everyday. For me, I get all those things from my kids.

When I look at my kids, I don't see their list of diagnosis. I don't them as people making my life hard. I don't blame them for any anxiety or pain I ever feel. I see them as pure joy. As unconditional love. As the reason I get out of bed every morning. Sure, life isn't perfect, and we have hard days just like anyone else, but I never feel the need to escape them. They aren't parasites sucking away my happiness. They are my happiness.

Period.

People always say that parents of children with special needs need to take time away. Recharge their batteries. Step away from their kids, so that they can come back refreshed, and ready to handle anything thrown their way. Well, I refuse to believe that is the answer. Spending time with my kids, that is what recharges my batteries. That's what gives me the energy to fight for them, and make sure their lives are as full as possible.

Sure, I go out with friends, and a date night here and there is always nice, but I don't do those things to get away. I do them to reconnect with the people in my life, because those relationships are important. Not as a way to escape my life. Definitely not as a way to escape my kids.

I think we need to be careful with our words, because sometimes we come off as blaming our kids for all our troubles. Sometimes the only message we convey is that everything is hard, or that our children have beaten us down. That makes people thank their lucky stars they don't walk in our shoes, and that's not the message I want to send. Not to the general public, and especially not to my kids. I'm sure I sound ridiculously self-righteous, but I'm OK with that.

Maybe some do blame their children, and I'm sure there are parents who would trade places with someone else. But that's not me, and I wanted to make sure everyone knows that.

They give me strength, and I would follow them anywhere. 

A Bad Day?

credit

I've said it before, many times.

"Today was so hard. Why does it always have to be so hard?"

I've taken for granted the bits of joy, and focused only on the bits that aren't so joyous.

I've put K in situations I know are beyond impossible for her, then cursed the gods when things didn't end well.

I've lost patience with B, and pushed him to the point of melting down.

Yet, I'm always surprised. Always left wondering. Always asking why everything has to be so hard? Why must we face so many bad days?

But, I don't want to ask those questions anymore. When I let out a weary sigh, and talk about how bad the day was, I am, in essence, placing the blame squarely on my children's shoulders. I don't take into account my own missteps. My own inability to understand life isn't perfect for anyone, and see the gifts each day has to offer. I'm telling people that because of autism, because of my kids, there are days that are just plain awful. It's not a burden my children should have to bear.

I never want my kids to see frustration or sadness on my face, and think they are the cause. I never want my attitude to convey to the world that autism is some giant, evil, monster, and therefore so are my children. I don't want to give the "hard" times a life of their own, making them the only things people see. Bad days are a given for anyone, so why can't we shift the focus to the good days? Build up ourselves, one another, our kids, with those?

There is being honest, and then there is throwing a pity-party each day. There is doing the same things over and over again, and being shocked the results are always the same. There's never being able to share a story of something fantastic, without qualifying it with something bad happening while getting there.

Because we can never just share joy. We might lose our membership to the club if we did that.

We can rationalize it many ways, but each time you choose to tell the world how bad your day was because of autism, you are tearing your child down. Making them the cause of your pain. Especially if you believe there is no separating autism from your child.

A "bad" day means without your child, it would have been a good day, and that is just so sad to me.

I'm sure many of you think I am oversimplifying things. That life is so much more complex than what I've described, and how dare I accuse anyone of blaming their child when life gets hard! Just remember, what the outside world sees from us is what shapes public opinion. I know there are those who see autism as a fate worse than death, and can see nothing positive about the lives their children lead, but that's not me, and that's certainly not what I want the people around me believing.

Sure, there are days when life doesn't go exactly as planned, I am not denying that. Of course we are allowed to vent. The problem arises when all we do is vent, and feel that we can't share anything good without peppering our stories with little reminders of how it isn't always that way.

My hard days are mine, caused by my own reactions to the world around me. I need to own that, because it's just too easy to blame autism, instead of working on myself. It's been a long journey to this point, but how I see my life is my choice, and I'm tired of being miserable. It's time to start enjoying my children, and sharing that with the world.

What am I teaching them about autism? What am I teaching the world? 

There Are Always Two Sides

When you read a person's blog, their tweets, their Facebook page, the important thing to remember is you are only getting one side of the story. No matter what you read, no matter the stories you are told, there is always another side you don't know about. Always.

A few years back, when I started blogging more about autism than my trips to Target, we were in a dark time. K's aggression was at it's height. I won't go into details about things that happened, but at one point I thought K and I were going to have to move out. It was time when we made appointments with every doctor and therapist we could. When we had IEP meetings every month. When I felt so defeated, I wondered how I'd make it through the day.

And I wrote about it on my blog. I went into far too many details, not thinking twice about my daughter's privacy, or how the world was going to view here through reading my blog. Of course, I had people emailing me their sympathies. I had people tweeting me, and supporting me on FB. No one ever asked what the other side was. Why K was having such behaviors. What we were going to figure it out, or, yes, what part my husband and I played in the situation. People didn't think about K. I didn't think about K. I thought about myself, and how hard my life was, and that was all I wrote about. Looking back, I see what a huge part I played in making those days so dark. How horribly I handled things. How I ran us all ragged with those doctors and therapist appointments. How I was basically telling my child through my actions how bad she was, and how she was ruining all our lives.

At the time, I didn't see it that way. If someone had asked for the other side of the story, or tried to make me think differently, I probably would have cut them out of my life. I said how much I hated autism. How it was a parasite that was keeping K from being who she was truly meant to be. I did everything in my power to fix her. We spent every spare dollar we had trying to remove autism, and that's no exaggeration. We couldn't afford much else, especially since a lot of things at the time weren't covered by insurance. I barely saw my husband because I was gone 4-5 nights a week with K. My marriage suffered. My son was dragged along to appointment after appointment. It consumed my life...trying to break K free from the big A.

During those years, admittedly, it was all about me. How I felt. What I was doing. How hard life was for me. I was living in a world of self-pity. I was a martyr for the cause.

It's difficult, reflecting back on those years. I spent so much time trying to change my child, I never stopped to wonder if she really needed to be changed. I didn't stop to see how hard life was for her. I didn't take two seconds to see how the decisions I made were affecting my child. What wasn't working. What was best for her, even if it didn't align with the gold standard of autism treatments. I take a lot of responsibility for those years, now. Most of the responsibility. I probably deserve it all.

I'm ashamed at how long it took me to just leave my child alone, and be who she is. She doesn't have to be typical to be a enjoyed. She hasn't been taken hostage by autism. I've learned to listen to her, spoken word and not. I used to blame our old speech therapist for dropping K as a client bc of her behavior issues, but the thing is, K was telling us all that it just wasn't working anymore. I was too stubborn to listen. Behavior is communication. Always. I just never listened. I knew best. I was the mom.

K still has her days. The difference is, I just let her be. Forcing anything always makes things more difficult, and autism isn't something to be conquered. It's just how her brain is wired. We tend to personify it, making it something it isn't, and that's what gets us in trouble. Autism is a word we use to describe a certain type of neurology, but it's not alive. It's not doing anything to anyone. It's not evil. It's not some separate entity we can kill off, no matter what some people believe.

Here's the thing, we all have our own opinions about autism, and that's fine, but only if our kids are safe. The second we start doing things to our children that are potentially harmful, burning ourselves out to fix them, making them feel like they are less, then it's not fine. Our children, no matter how severe, are people. Human beings, with thoughts and feelings and emotions. They have a side of the story, too, and it isn't just about us as parents. We have to be honest about our kids, our shortcomings, and what is really beneficial.

I never thought I'd be on this side. I never thought I'd step away from hating autism. I rallied against it for so long, and I did cut people out of my life who I thought were judging my parenting. I was angry, and lost, and depressed...and I made myself that way. And it was never my child's fault. We choose how  we live, and we can't live in such a negative space forever. If we do, then things like last week happen, and they just can't.

I also want you to be aware of how those not in the autism community view us. I was reading a People article today about the incident last week, and I was sickened by some of the comments. How, after reading this mother's blog, some believed she should be freed. That it was completely understandable, trying to kill your child in that situation. That one side they read, her words, made them think she hadn't even committed a crime. Her life had been so hard, all because of her autistic daughter. No mention of what that child went through. It's easy to say these things when we don't see both parties equally, as human beings. When one is seen as damaged, and less.. Because that is how these people see Issy. As less. As having done something to make her mother attempt murder. It's all her fault.

And I say again, there are two sides of every story.

TWO.

When the outside world (and even those inside) think a mother shouldn't be punished for trying to kill her child, because autism is so awful, and her life was so hard, then we have failed as a community. We need to stop fighting one another, and work together to keep every child safe. They should be our #1 priority. I hope we can all agree on that. You can continue to hate autism, and send that message to the world, but just realize how that message shapes the opinions of others. Stop and decide what message you really want to send, and how much our children are worth.

For My Son

Dear B,

I never imagined myself having a boy, and wasn't quite sure what to think when the ultrasound showed, well, you. I knew girls. I understood girls. But a boy? What was I going to do with one? I knew nothing about sports, or trucks, or clothes that didn't come in pink.

But, I didn't need to know about any of those things. Why? Because you have become my teacher. You have led me on this wild, messy, wonderful journey of having a son. You want to learn everything, then share it with me. You have energy I wish I could bottle, and a laugh that can lift me from the deepest despair. I love your tight hugs, and I will continue to kiss you "a million times a day". Your face is just too sweet to resist. But, you already know that.

I know you march to the beat of your own drummer, and some might not appreciate that. I want you to know, that even when I am tired, and don't think I can hear one more fact about sperm whales, or MineCraft, I still love your spirit. I love everything about you. I wouldn't want you to change. Being different is a good thing. It will get you far. You are so smart, and think of things that would never enter my mind. One day, you will make an incredible crane operator/paleontologist.

My hope for you is that you continue to be comfortable in your own skin. You keep that confidence, and don't let others bring you down. That you remember what a great person you are. Those who think differently aren't worthy of your time.

I love you more than there are stars in the sky (and I am sure you will ask me how many stars are in the sky), and I will always be a person you can trust and rely on, even when life throws a bunch of dodgeballs at your head. No matter what, my love for you is unconditional. We have our ups and downs, and sometimes frustration gets the best of you, but just know, it's OK. I know this world can be difficult to navigate for a boy like you, but I will never get angry when you are struggling.

Having Aspergers means your brain is wired differently, but it doesn't mean that you are to blame for difficult times. I will never blame you for my own shortcomings as a parent. I will make mistakes, but I will always try to do better. I will never see you as broken, because you aren't. You are my perfect boy, and I love you to the moon and back, (and, yes, I'll "go ask Siri" how far that is).

Love,

Mom
xxoo

Go here to see the letter to my daughter. 

For My Daughter

Dear K,

I loved you before you were born. A kind of love I didn't know existed. In all my life, before you and B, I never loved anything, or anyone, so completely. So unconditionally. I could pick you out of a crowded room, blindfolded. You are the greatest thing I've done. No college degree, no fancy trip, no high paying job, could compare to the feeling I get when I see your face every morning. You and your brother are my loves.

My sunshines.

I want you to know, you are perfect to me. No diagnosis, no behavior, no struggle we encounter, will ever change how I feel. Sometimes, being autistic can make life a little more difficult, but I am right here with you, carrying you through. I will never be angry because of your autism. I will never wish you were someone different. I cannot imagine my life without you. I don't even want to try.

There are times when you get upset. Have a meltdown because things are too loud, or overwhelming. Because people aren't understanding you. Or because your anxiety has bubbled to the surface. I need you to know, I am not angry when you feel that way. I am not angry when you yell. I am not angry when you can't find the words, and your frustration boils over. I am not angry when you lash out. I know it's not purposeful. I know your brain is wired differently, and having to fit into our world all day, everyday, takes it's toll. I don't blame you when things get to be too much. I am here to help you, any way I can.

I also want you to know that you don't have to pretend. You don't have to struggle so hard to fit the stereotype of a "typical child". Feel comfortable just being you, and know I will always back you up, always fight for you, always be your biggest cheerleader, and always protect you.

There are people in the world who aren't so nice. Who bully. Who see your differences as something bad, and will want you to change. I wish people like this didn't exist, but they do. Just remember, these people are wrong. They are not worth your time.

Nothing will ever happen to make me stop loving you. My life is better with you in it, and every day, when I see your sweet face, I am reminded how lucky I am.

I wish that I could promise you an easy life, but no one is promised that. What I will promise is that I will always be someone you can count on, and someone you never have to fear. I accept everything you are, and look forward to following you on this journey. Your dreams belong to you.



Love,

Mom
xxoo

Go here to see the letter to my son. 

I Shall Not Admit Defeat!

It's been a week. Or, really, a week and a half. Forget waiting for the other shoe to drop. I think sometime this week I looked up and 757 shoes came raining down.

But, as K's therapist's would say, that's glass half empty thinking, and that won't do.

It all began when I got into a fender bender the week before last. Apparently a red light doesn't mean the same thing to all people, and the woman behind me figured she'd use my car to stop, as opposed to her brakes. She looked at my broken bumper and told me to just get some glue. She didn't want to hear the person in the car with me had whiplash, and decided the best thing to do was jump into her vehicle and drive away. From an accident. Because, you know, why not?

One 911 call later, I filed a police report, called the husband, and had my poor car towed. Thankfully, I now have it back, so I can ring in 200,000 miles as planned. I mean, I am a little over 198,000. I was not happy thinking I might not get to reach the next milestone. It's the little things.

We are not a one car family, but someone, who shall remain nameless, thought he'd save a few bucks and not add rental car insurance to our policy. Let's just say, it's being added now. I always had this idea in my head that we could ditch a car, and just share one to save money. A lot of people do that. We...are not these people.

So, we're cruising along last week, and then Wednesday happened. Let me start by saying I am very thankful my husband decided to work from home that day. I am not thankful I put off taking a shower...

After getting K off to school, my husband, B, and I slept in. It was the one day that week I had nothing to do. We got up around 9:30 (yes, 9:30...I know some of you are murdering me in your heads), I made B breakfast, and while he ate I checked my email (and, OK, probably Facebook and Twitter) in the other room.

One second I hear B talking to our dog, and the next I hear gurgling. Gurgling that I thought was caused by him making a mess with his chocolate milk.

Don't I wish.

I walked into the kitchen and found him on the floor. Drooling. Convulsing. Not responsive in the least. I called (screamed) for my husband, and dialed 911 (two 911 calls in a week is not my idea of a good time).

My kid was having a seizure.

Seizures are not something we've ever dealt with. Quite frankly, I thought we had dodged that little autism bullet (if it is at all related to autism). It was the scariest morning of my life. I literally thought my kid was dying. It took him a long time to snap out of it. He even lost speech for a while. Thankfully he remembers nothing, thinks it's cool he got to ride in an ambulance, and thought the ER was fun...they had saltines and ginger ale. Party down.

I really don't think paranoia begins to describe how I've felt since. I don't want to leave him along for 2 seconds, and have forced him to sleep with me all this week, thereby forcing my poor husband to the couch (but he has a dog to snuggle, so don't feel too bad for him).

I've tried not to Google grand mal seizure. I've tried convincing myself that B might be one of those kids who randomly has one seizure, then never again. We thankfully got in with a neurologist tomorrow afternoon, and I am anxious to just get on with it...whatever "it" might be. I am sure there will be EEG's and tests...protocols for school and camp...I just want all our ducks in a row. I want to know what to expect. I want to know more than I know now.

And I never want to see my child like that again.

Some other, personal stuff went on this weekend that I'm not at liberty to share, but all in all, I've had a lot on my mind, and am ready to hibernate for the winter. I am thankful for some friends and family who understand that I am currently half-human, and who are giving me the time to live in my own little world. Pretty much all I can muster is being a "mom" right now (so, I guess I'm thankful for an understanding hubby, too).

The one light in all of this is that last week we secured a permanent school placement for Katie, which is huge, and wonderful, and takes a giant weight off my shoulders. Not that the universe needed to replace that weight, but that's life. I'm glad K will remain somewhere she is happy, and thriving. One hurdle down, a zillion to go.

But, these past couple weeks have put a lot into perspective. Life is short. Anything can happen. I'm in control of pretty much nothing. So, the things I can control, I will. I need to make sure my family is happy. I need to make sure I am happy. I need to be selective with those I let into our lives, and not live in that glass half empty way. In the end, we are all responsible for ourselves, our actions, our decisions. How we choose to live. What is important, what isn't. What stress is necessary, and what can be left behind.

(Blah, blah, blah, etc, etc, etc, please stop waxing philosophical, says the audience, eyes rolling).

Love,

Your favorite pseudo-blogger (I am, right?)

J

The Change, The Choice

There were hard years. 

Years.

I'm sure there will be more.

Devastating times when I wasn't sure how our family would move forward. How we would make it through one more day. How my marriage would survive. How we could continue to all live under one roof. Things happened I don't talk about publicly. 

There were many sleepless night. 

Tears. 

Anxiety. 

Fear. 

What would the future bring? 

Why me? Why my child? 

Why must we endure a life this hard?

Why must I watch my child struggle to fit in? Be accepted? Be happy?

We were exhausted. 

Angry. 

Betrayed by the universe, insurance companies, schools...friends. 

What had we done so wrong to be cursed with this affliction?

Autism. 

Why? 

Change happens slowly. Sometimes at an infinitesimal rate. 

A crack in those bitter feelings, here or there. 

The ability to see joy in the faces of our children. They find happiness in a different place, a different way, yet it's there. The darkness isn't as pervasive as we once thought. Our eyes are open, bit by bit. Sometimes they snap shut again, but we slowly begin to see the small slivers of light. 

We loosen our grip on the dreams made years ago, realizing we can't move forward without setting them free. We create new dreams. Different, yet important. 

Acceptance begins it's slow journey into our hearts and minds. The realization that none of us are ever promised a perfect life. 

None of us. 

That how we play the cards we're dealt makes the difference between love and hate. Joy and sadness.  

I can no longer fight my own children. 

I am not the victim of their autism. 

Their struggles. 

Their hardships.

Because, yes, life can be so.utterly.hard. 

But, autism isn't being done to me. Autism just is. 

I will help my children. Fight for them. But never, ever claim to be a victim of them. I won't sit around feeling sorry for myself. What does that accomplish? It just drags you deeper into a hole that maybe one day will swallow you completely. That's not the life I want, no matter how hard things get. 

I must be a champion for my children. Their cheerleader. The one convincing the world of how beautiful they are. That they are not wrong. Damaged. Worthless. 

I love them more than I ever thought possible. I will accept them for all they are, good or bad, easy or hard. 

I won't focus on the tough times. I won't look for heartache, but instead look for times of joy. Joy I can share with others. I will focus on the light, because it's there. Even when we can barely see it.

I will not be a martyr. I will take a long look at myself, and change what needs to be changed. Be honest about my part in my children's behaviors. I look back and know there were times I made it worse, not better. It isn't just about them. Their issues. It's about my issues, too. It's about treating them with respect, and not damaged goods. 

They are my children. 

Whole. Lovely. Mine. 

Raising a child with special needs is challenging. We must deal with more than others. Prepare for life down the road. But we cannot allow that to get in the way of enjoying them. What they bring to the world.  We must do what  needs to be done, take the extra steps we' are required to take, but without wishing for something else. 

Because, no matter what, that's not reality. Not how the world works. 

There is no magic wand. No time machine. No crystal ball. 

No one said this would be easy. Not by a long shot. But we can still make a choice. Take the path of fear, anger, sadness. Shaking our fists at the gods for the life we've been given. Finding the negative in everything that comes our way. 

Or, we can choose to see our children as the gifts they are, just as they are. Showing the world true acceptance. Showing our children unconditional love. Showing ourselves and our children how strong we are, and how different is never less. 

Two paths. 

Which will you choose? 

There is Love...

K and B do not get along. It goes beyond sibling rivalry. The challenges they both face make it more difficult to be flexible, to control their emotions, to walk away when they get upset.

Sometimes I feel that I am a full time referee.

But, there are moments of magic, where they play so well together, it makes up for the times when they...don't.

Or when B shows great compassion towards K when she's having a particular difficult time, even if she doesn't want to accept it.

Or when K tells B that she loves him out of the blue, and they give each other a genuine hug.

I try to focus on those times. Remember they really do love one another, even when their actions speak the exact opposite.

Then, last night, K came up to me and said she wanted to buy B a Christmas gift. Sure, it was two days before Christmas, and the last thing I want to do is go anywhere near a store, but none of that mattered.

She asked, on her own. We hadn't talked about them choosing gifts for one another. I hadn't come up with the idea myself (as I sometimes want to when I hear of other siblings doing the same). It was all her. She thought about her brother, without being prompted, and wanted to do something for him.

Because, regardless of what happens, there is love.

Even when our kids struggle the most, I believe, truly, truly believe, we are a family who has deep love for one another. Between the children, it might not always show, but it's there. An unbreakable bond.

And that's the only Christmas gift I need.

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