Monday, September 30, 2013

A Bad Day?

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? 

Thursday, September 26, 2013

We Don't Need to Live the Same Life to Feel Connected


I think I've always been incredibly honest on my blog, about our life with autism. I don't have children who are considered "severe". If you met K and B, you might not see them as having any issues right off the bat. They don't flap. They have language (Ben has too much language...ha.) They don't toe walk, or look "stereotypically" autistic.

You'd probably notice B, first. Mostly because he rarely makes eye contact, and goes on and on and on and...well, you get it. He doesn't want to have back and forth conversations, but would prefer if you just listened to him talk about his interests all day. He can't be still. He is more stimmy than K, but it can just look like he moves a lot. People don't realize stimming doesn't begin and end with flapping. I even know some profoundly autistic individuals who don't flap.

It might take a bit for you to really notice that anything is going on with K. She's very quiet, and doesn't say much. She has very restricted interests, but won't go on and on like her brother. She speaks when she has something to say, and is plenty verbal, but isn't going to have a random conversation with you. Her speech can slow down significantly the more she talks, and it is something that frustrates her a lot. Sometimes she'll be excited, and share something with you, but she's definitely not the same as your typical 9 1/2 year old girl.

K is also my jumper. When she's excited, or anxious, she jumps. She's been known to make fists, over and over, for no particular reason. Sometimes she rubs her stomach, up and down, as a way to calm herself. Again, nothing you would point at and immediately say, AUTISM, unless you spent more time with her, and saw all the pieces come together.

K is also the child who "spaces out", more. Who sometimes doesn't seem quite with it. It can look like she's just not paying attention, daydreaming, or being rude. It's not any of those things. It's just her brand of autism.

When it comes to play, K is my stereotypical autistic kid. She just doesn't do it. Never has. It used to bother me, but it doesn't anymore. If lining up all her stuffed animals makes her happy, so be it. If having collections of toys, instead of actually playing with them, floats her boat, great! She'll be 10 in a few months, and has recently become interested in My Little Pony. I'll get her a few, and be happy she's not into typical "tween" things, because My Little Pony is much better than Justin Beiber (or insert any awful boy band/tween show/fad, here.) Although, since Netflix has a plethora of said tween shows, you are likely to hear K script a line here and there, or notice an attitude eerily similar to one of the characters. You'd probably just think she was being a typical girl her age, but she's isn't.

For the most part, my kids aren't scripters, though. K used to be, but not so much now. Sure, B will make me play out an episode of Spongebob with him, or ask me "What time is it" from Bubble Guppies 100 times a day, but I don't see that as scripting. They have language, they use it, and sometimes kids just like to repeat their favorite shows. Heck, I know typical adults who do that!

B is less stereotypical when it comes to play. He loves to play. He was coming up with really involved play scenarios at 2. Of course, you can only play what he comes up with, and don't even bother trying to insert your own ideas. During his neuropsych testing, he actually put his hands up and told the tester to not come play with him, because she would just mess things up. He has an amazing imagination, and sometimes what he wants to do isn't on par with what his peers want to do. He prefers older kids, because of this. It's cool having a kid who actually plays, though. I'll take it! 

Both kids are easily frustrated. Both have meltdowns that can look alot like they are just bratty, spoiled, kids. Those who are only familiar with the severe forms of autism, wouldn't guess there was something deeper going on. Over the years I've learned to not let looks and comments get to me. Doesn't mean it's not still hard dragging a screaming kid out of Target, but I won't be the mother yelling at people because they give us looks. People like that aren't worth my time.

They both have sensory issues, although B is much more severe. He has a lot of tactile issues, and still has trouble being independent with things like tooth brushing and toileting, because of these issues. Do not dare put something sticky on his hands, because he will take you out trying to get to a sink. We went through a period of handwashing that left his hands bloody and dry, but thankfully that has eased up a bit. I used to be the only parent at preschool pick up not handed an art project, because B refused to even touch a paintbrush, lest a dot of paint get on him, and don't even get started on glue.

K almost "under feels" things, so clothing and stickiness, or how tight/loose something is, doesn't affect her like it does B. She is more a seeker in that way, where she could roll around in sand for hours, or cover herself with shaving cream and feel great. She cannot stand crowds or loud noise, though, and will let everyone around her know when things aren't OK! She has more anxiety than B, and is less able to wait, too. It's a mixed bag.

Sometimes it's hard having kids who aren't the stereotypes people look for (although, I think Ben screams Aspergers pretty loudly these days.) Sometimes I feel like I don't belong in the "club", or others don't think I belong. Sometimes I can't relate to the struggles other parents have, as I'm sure they can't always relate to mine. I'll admit when I don't understand, though. I don't try to make it seem like I get all aspects of autism. I don't.

You won't find me exaggerating how affected my kids are, just so I can relate. I mention this because there are people who take great liberties with what autism looks like in their families. Probably because if they told the truth, they'd lose their main audience. I know people like this. It bothers me a lot, but I am not the autism police. I'm not here to rat people out, or question intentions. I just wanted to be clear that I am not one of them. What you see is what you get.

Why did I write this blog? Because I want you, my reader(s) to really understand our life on the spectrum. I want you to know that I get if there are times you shake your fist at me, and say I just don't get it. I am sure sometimes I don't. There are things I am an expert in, but I wouldn't call myself an expert in autism. Just our particular brand(s).

But, I am here to listen. I'm here to laugh and cry and celebrate and curse the gods with you. I might not live your life, but I can be be the shoulder you need when things aren't going so well. We're all humans, we all have compassion. At least we all should.

I recently updated my about page, and added my email address. I loathe the (somewhat) anonymous nature of this blog, and I miss the days when people emailed me, and connected on a more personal level. Especially in this day and age, when not having someone to listen can kick off a trip to a really dark place.

We might come from very different worlds, but it doesn't mean we can't be each other's rocks. That really is what community, or "a village" should be about. I don't blog for followers or popularity (good thing, eh!), I blog to make connections. I want to start doing that more. It's what I miss about my old style of "wide-open" blogging, the most.

Wednesday, September 25, 2013

It's OK

image credit

Three weeks ago, K started back at her adaptive dance program. It's a great class offered by Boston Ballet, for kids with autism (they also have a fantastic program for children with Down Syndrome.) K has attempted typical dance classes in the past, but while she loves to dance, the classes were always too much for her. A few hardcore teachers who expected 4 year olds to behave like adult professionals didn't help (unfortunately, the two studios we tried had very little patience/understanding for children with special needs.)

I am forever Googling "(insert activity here) for kids with autism" (dance, gymnastics, sports), just to see what is available, and if there is anything that would interest K. When I first came across the Boston Ballet class, I was hesitant. It's at 9am on Saturday mornings, and an hour away (we like our sleep around here), but I decided to give it a chance. K had expressed interest in trying dance again, and I had been unsuccessful finding something closer to home.

To be honest, we had a rough start. Anything new is just difficult for K, and the first couple classes didn't go as smoothly as I hoped. It was a learning curve for us...what she should wear, how to prevent her from overheating and melting down, how to add breaks if she needed them. K might be seemingly "higher functioning" than a lot of the kids, but she is probably the most easily upset. It was difficult to watch every other child enjoy the class, while my daughter struggled.

And, yes, I sweated it at first. Why, even in a class designed for kids with autism, did she still have trouble? It reminded me of an autism walk we did a few years back, when my child pretty much melted down from start to finish (the shirt was too itchy, she was too hot, it was too loud), and I felt like we were the only ones, out of thousands of people, with a child having a hard time. K so badly wanted to be part of a dance class, but here we were at a class designed for kids like her, and it was still hard. And she seemed to be the only kid for which it was hard. Again.

Of course, it was nice to be in a class where people were more understanding, and the other parents didn't give me the evil eye. I really wished K could just be as happy as everyone else, though. I just wanted something to finally work out for her, because up until then, nothing else had.

I did think about quitting. I left it up to K, and she kept deciding to go back every week. I bought prizes for her to earn if she made it all the way through class. We went shopping for clothing she'd be more comfortable wearing. We talked about expected and unexpected behaviors. The whole nine. I did everything in my power to get her through that class, because she really wanted to go.

There were a lot of times she did really well. When she enjoyed the whole class, and didn't let her anxiety take over. But there were other classes that were still difficult, and I just sat there praying to the universe that she didn't have a giant meltdown (I should add this was also during the time she was having an awful time at school, so that didn't help. She was just very unsettled in general, and looking back, I realize how big of a part that played into her general attitude at the time.) I wanted her to be successful, and find joy doing something she loved.

She made it through both the fall and spring sessions, and had a fabulous time at the end of year show. However, I still wasn't sure if another year was in the cards for us. We talked about it over the summer, and K went back and forth about whether she wanted to continue. Ultimately, though, she decided to go back, and as soon as she made her decision, I decided I needed an attitude adjustment of my own.

You see, the point of the class is for K to have fun. I didn't want to make the class work. I realized having her earn prizes to make it through the class was wrong. If she couldn't make it, who cares? Why make her feel bad if she didn't earn a prize? That isn't fun. If she made it through 30 minutes of the hour, I'd take it. If we got there and she didn't make it at all, no big deal. I wanted her to lead the way, completely. She was in charge.

We stopped talking about expected and unexpected behaviors, because K needed to be free to be herself. That's why we signed up for this class. There was no pressure. Mom wasn't going to get angry if things didn't go perfectly. As long as she wanted to attend the class, we'd go, but she was the boss. I was just a spectator.

So, last week, when she got to class and almost immediately decided she didn't want to participate, it wasn't a big deal. It was my husband who brought her, as they had planned a special daddy/daughter day, and he called me shortly after arriving. He told me K was having a hard time, and when she got on the phone, I told her it was OK if she didn't attend class. I wasn't mad. It was her choice.

Last year I would have bribed her to stay. I would have begged her to pull it together, and finish class. *I* wanted her to be successful so badly, that I didn't allow her voice to matter. Like a lot of changes I've made lately, making sure my child has a voice is probably the most important one. It's her life, and she needs to be able to speak up for what she wants.

So, I don't look at last week as a failure, I look at it as a GIANT success. K knew she couldn't handle class, spoke up, and we listened. It was a success for her in self-advocacy, and a success for us as parents. We allowed K to do what was best for her, without feeling angry, embarrassed, or that "autism" had ruined the day. Growth all around.

This Saturday we'll go back, and maybe she'll have a great time, as she did the first two weeks of class, or maybe we'll cut out early again. Whatever happens, it will be OK. The only thing I have to worry about is if my child is happy, and letting go of everything else feels really good.

Tuesday, September 24, 2013

The Disney Debacle

I'm sure you've heard about it by now, the changes Disney is making to the Guest Assistance Pass. There are many parents who are outraged, some who don't seem to take issue (bloggers who are probably towing the Disney line.) Then there are those outside the special needs community who think we are all just crazy, or entitled, and undeserving of any accommodations at all.

I want to share with you our Disney experience. Maybe that will help people understand why the disability pass was/is so important to families like mine. 

We went to Disney when K was 6, during April school vacation. I had heard of the disability pass, and made sure to secure letters from doctors and therapists, stating why we needed the pass, and outlining K's diagnosis. I wasn't sure if we'd need proof, but I wanted to make sure I had some, just in case. 

Now, there was part of us that really didn't think we'd needed the special accommodations. We actually attempted the Magic Kingdom without the pass, but while waiting in line for the Jungle Safari, our first ride of the day, we quickly realized we needed to hightail it to guest services. You see, it's not just about waiting in line. I am sure there are a lot of typical kids (and parents) who would prefer not to stand around for 30-60 minutes, or more, to get on a ride. The difference is, they don't have sensory issues, heat intolerance, low muscle tone, or communication issues, which hinder their ability to wait. Which makes their anxieties soar through the roof. Which leads to a meltdown, necessitating a quick exit from the park, and a lost day at Disney.  

Once we secured our pass, it wasn't like everything was perfect. My daughter didn't cease being autistic just because we held a little disability card in our hands. It was still tough, but not as tough, being that we could wait in a shaded area, with less people (read: less noise!), less sun, and less physical demands on a kid whose muscles weren't up to par with her peers. It meant less stress for my daughter, less anxiety, and less demands on language skills that were not the same as your typical 6 year old.  

The new pass seems to be a lot like Disney's FastPass. You go to a kiosk, and you will be given a return time for the ride. Actually, I'm not really sure what the difference will be, except I guess you could go actually FastPass another ride with your ticket, and have 2 rides to wait for, instead of just one. (I am also not sure what families are supposed to do for rides that won't fall under this new disability fast pass, because from what I gather it doesn't cover all rides.) This, of course, entails a lot of waiting. Sure, you don't have to stand in line, but you do have to figure out what to do with your kid(s) while you wait. 

Some have suggested families could go see a show, and I tell them about the shows we tried to see the last time we visited Disney, and how my child ended up either sitting in a corner, rocking and crying (Little Mermaid show), or trying desperately to escape the dark, loud theater (Bug's Life Show). Shows are not an option for us. Even though K is older now, she is still the same in a lot of ways.

I guess we could walk the park, while we waited. I'm sure that wouldn't make K's heat intolerance, or endurance issue, worse. I'm sure walking around a very crowded, very noisy, theme park for an hour wouldn't bother her at all! All the sights, sounds, smells, would be a constant assault on her sensory system. Her anxiety would stay at bay. We'd easily be able to communicate with our daughter. It would be fine! (You get the sarcasm here, right?)

As it was, we couldn't make it through a full day at any park. The pass allowed us to do as much as possible, before K really hit the wall. The new pass will not allow us the same. We will spend the short time we have waiting for our "return time" to come up.  We pay for our tickets, just like everyone else, and making accommodations so our family can have as magical an experience as everyone else doesn't seem like too much to ask. 

There are those who don't think we should bring our kids to Disney, at all. That clearly our kids don't belong there, if they can't handle it like any other person. I really don't have much to say to that. If someone truly believe my kid doesn't deserve to go to Disney because she's autistic, I am not going to waste my time addressing them.

The thing is, the parts of Disney K loved, she loved. Small World brought her joy I can't even describe in words. The safari at Animal Kingdom, for a girl who is so connected to animals, was pure magic.  

And you know what? We didn't abuse the pass. There were tons of rides B wanted to go on, that K wouldn't go near, but we never once entertained the idea of using the pass so he could skip the lines (at the time Ben had no diagnosis, and was fine waiting on daddy's shoulders.) When he wanted to ride Pirates of the Caribbean, he and my husband waited in line. When he wanted to ride the Haunted Mansion, he and I stood with everyone else. We got the pass for K, and we used it only when K went on a ride. 

So, entitled? I think not. 

It's a shame that there were people who abused the system. Who hired disabled tour guides so they were able to skip the long lines. Since Disney doesn't ask for proof of disability, I am sure there were others who took advantage of the system, as well. However, I don't think the changes Disney is making are a good idea, or the best way to respond to the problem. I am also curious about how large a problem it was, that Disney thought ripping the rug out from under special needs families was the answer. Was it truly a far reaching epidemic, or did Disney just feel the need to respond after the Manhattan Moms story came out? Not that I am saying any level of deceit is OK, I am just saying families like mine shouldn't be the ones punished. 

Bottom line: every family deserves to have a magical experience at Disney. Making it impossible for many special needs families to enjoy the parks is beyond wrong. I really hope Disney realizes just how much these changes are affecting families like mine, and tries to find a better way. 


It's only September, and I've been fooled into thinking "maybe this year will be the year"  before, but maybe this really will be the goes well.

I remember the beginning of last year for K. Third grade, in a typical classroom, with a lot of supports. Early in the year, her teacher told me how well things were going, and how she hadn't seen any of the issues we'd seen in 2nd grade. Part of me felt defensive...I swear there were issues! But, another part of me felt that maybe maturity was on our side, and 3rd grade would be the turning point. A lot of people say 3rd grade is the make it or break it year. Kids are required to be more independent in their work. All things social get even more tricky. It's really just the year your child goes from baby to big kid. Scary, yet I had hope.

Of course, things didn't go as planned. Third grade didn't continue to go well, past those first few weeks. K does the opposite of most, where the first few weeks are GREAT, and then we hit a rough patch. She's always excited to start school, and we never have that initial issue with transition. Probably because those last few weeks of summer vacation are so all over the place, she's glad to have some routine back.

But, after those first few weeks of 3rd grade, we definitely hit a rough patch. Long story short, she went from mainstream, to autism class, to home tutoring, to private placement. Yes, 3rd grade was the make or break year for her, and unfortunately the latter happened. I've admittedly had a hard time adjusting to her not being three minutes down the street at our neighborhood school, but that's my issue, really. Sometimes it's hard to let go of every dream, all at once. But, I do realize my dreams are mine, not hers, and I'm working hard to get over myself.

Right now, she is doing so well at her new school. Amazingly well. Of course, nothing is ever perfect, but this is leaps and bounds better than where she was before (and I want to add that her 3rd grade teacher was awesome. It wasn't her fault that K wasn't successful in the mainstream. Since first grade, K has been blessed with fantastic teachers. I think that helped her make it as far as she did.)

This past week alone, I've received such positive reports from two different people at her school. How well she is doing. How engaged she is. How she's even reading out loud in class (which is huge for my reading challenged kid!) She is participating, and happy. Basically the polar opposite of before. It helps that her new school is year round. Even though she missed a couple weeks this summer because of camp, she still had way more routine than any previous ESY. If there's any kid who thrives on consistency, it's K.

K has a lot of potential, and I want to make sure she achieves everything she desires in life. She has big dreams, and I hope everything we're doing, the program she is in right now, plays a part in her seeing those dreams come true. I do struggle sometimes, knowing inclusion (or our district's idea of inclusion), didn't work. I struggle figuring out what placement will work for her long-term. But, for now, I'll just take the happiness this new school has brought out in K. She deserves it.

Tuesday, September 10, 2013

Seriously, Enough is Enough.

I was perusing Twitter this morning, when I came across a string of tweets that I wish I never saw. Not because I want to turn a blind eye, but because I wish they didn't exist in the first place. Unfortunately, they do, and as much as I want to go on my merry way with this blog, and not continue to write post after post on the same subject, I just couldn't  leave it alone.

I won't give out Twitter handles, but here is part of the conversation.

"When you cure my Autism, you cure my originality".

Innocent enough. One person's opinion. No big deal. Until...the responses. Here are a few:

"Originality - that's a hell of a name for severe disability - get real".

"In severe cases it can be a lifelong drain of unconditional love. Yes...drain".

"My two children are a great gift to me. Autism - yeah, not so much".

There were a few other responses, but they are more identifying, with the names of children, so I left them out. I ended up clicking on the profile of the original poster, and found out she is 13.


I am hoping none of the people who responded to her took the time to look at her actual profile, because if they did, saw she was a child, and still decided to respond that way? Well, there are no words. Not words that I want to use here, anyway, unless I want to change my blog to 18+.

Here is a girl, barely a teenager, sharing how she feels about her own autism. Let me emphasize this: her own autism. Because she is the autistic one, after all. She can speak to her own experience, and that should be respected. Even if people disagree with her, basically cyber-bullying a child is inexcusable. Period.

Telling a child the condition with which she lives is a drain on a parent's unconditional love?

Telling a 13 year old to get real?

Response after response telling her how wrong she is, and that autism can only ever be a terrible, horrible thing?

And we wonder why people sympathize with murderers. We wonder why there is so much abuse in the special needs community as a whole. We wonder why kids commit suicide, after being bullied, and feeling unsupported.

It makes me feel physically sick.

When we are so stuck in our own self-pity, our own martyrdom, our own negativity, that we don't even think to see who we might be hurting when we open our mouths? Something is very, very wrong.

When you think it's OK to tear down a 13 year own girl, who is comfortable in her own skin, and doesn't see her autism as a curse? Something is very, very wrong.

When you understand why parents would murder their child? When you feel an outpouring of compassion for those parents, and blame the child for their actions? Something is very, very wrong.

When all you put out into the world is negativity, and darkness? Something is very, very wrong.

I've had it. I really have.

I hope others have had it, too, and we can work together to make sure every child is safe. Let's change laws. Lobby for our kids. Be on the look out for signs that a parent is about to go over the edge, and stop these tragedies before they happen. Let's make sure the outside world knows autism isn't a reason to hurt your child.

Let's make sure a 13 year old is safe to go online, express her opinion, and not be verbally assaulted by adults.

When your hatred for something makes you attack an innocent child, it's a sign things have spiraled out of control. Yes, everyone is entitled to their own opinion, but when our opinions become toxic? Enough really is enough. Our children deserve better.

Monday, September 9, 2013

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.


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.

Friday, September 6, 2013

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).



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.



Go here to see the letter to my son. 

Thursday, September 5, 2013

For The Children

A few months ago THIS happened. I blogged about it HERE.

And everyone was angry. People came out to condemn these woman for killing Alex. A man-child, with severe autism. How could anyone do that, we asked? There is always another way. I read blog post after blog post about how wrong murder was, regardless of the situation. Alex deserved justice.

Then, two days ago, THIS happened.

And suddenly, those same bloggers, those same autism parents, backed down.

This woman tweeted. She has a blog. A Facebook page. People had spoken to her online a couple times. She couldn't possible be a monster. Not like Alex's mom, whom they had all rushed to vilify day one.

Now, I am not speaking in this mother's defense. Far from it. What made me almost more sick than the actual situation, was the reaction within the autism community. That there must be more to the story, some other explanation, because this mother tried to help her daughter.

And Alex's mom tried to help her son.

But Alex's mother didn't have a blog. She wasn't sending messages on social media. Easier to condemn that way.

The truth is, I don't care what is going on in your life, murder is never, ever, ever the answer. I have been there with aggression. I have friends who have gone through worse things than either of these two families. Murder is never on the table.

It is the most selfish thing, taking someone's life. Trying or taking your own. Giving up so completely, you'd rather kill your child than do anything else. Than move. Than continue to fight. Than seek help for yourself, and not just your child. Loving your child means going to the ends of the earth to help them, regardless of how hard it is for you. They come first. That's the deal we all make when we decide to be parents. If you can't do that, you give up your right to be a parent. Even that is better than murder.

I get depression. I get not being able to get out of bed in the morning because life can be so.damn.hard. I get watching your family be torn apart because of your child's diagnosis. I get fighting the school so hard, you aren't sure you'll ever recover from the trauma. I personally get all those things, although none of them are the fault of our children. They cannot be blamed for our shortcomings as caregivers, or our inability to handle a life different from what we imagined. There is no way to justify killing, or trying to kill, your child. It is cowardly. It makes you a bad parent. There is no way around it.

The fact is, these kids need help. They need people to stand up for them, and find ways to  keep them safe. There has to be a safe haven.

Sunday, from Extreme Parenthood, said it well HERE.

I am not expert in changing or making laws. I don't know how to make a Safe Haven law for older kids. I think you need to start at the beginning, though, contacting your Senators and Representatives. Making phone calls. Sending emails. Harassing them. Not stopping until they talk to you. Being heard.

It's incredibly sad there are children that need to be protected from those who should love and care for them most, but that is reality.

Alex, Issy, all the other children murdered because of their autism...they need our voices to speak for them, now.

If you ever find yourself in a situation where hurting your child feels like the only way out, please, please, I beg you, call your own doctor. Reach out to others in the community! Anyone would be happy to talk, for hours on end, if it meant keeping your child safe. I don't care how hard it is to ask, ASK! There is always another way. Heck, contact me. I'll come to your house and help you myself, or find someone who can! No, there isn't a magical solution, and laws won't change tomorrow, granting parents unlimited resources for their child. While we fight for those things, we need to be here for one another. Let other parents know, murder is never the answer.

It does take a village, and maybe sometimes it can see really lonely, but please ask for help. Stop and look at the face of your sweet child, and know there is always another way.

Wednesday, September 4, 2013

Most Imporantly

The first day of school, B came home with a sheet of paper meant for me to write his likes/dislikes, strengths/weaknesses. I filled out both sides, just with general information, but I felt something was missing. Something that really got down to the nitty-gritty of what I wanted his teacher to know. School has never been easy, for either kid. We've had more than our fair share of struggles. I really just wanted to get a certain point across. More than "B likes dinosaurs and talking".

So, after filling out both sides of the initial sheet (which, btw, was really only meant to be filled out on one side), I took out a piece of notebook paper and added page three.

 Most importantly,  I never want B to feel that something is “wrong” with him. I think sometimes therapy, and constant redirection, can make our special children feel they are not good enough. It's a fine line between helping them cope and be successful, and making them feel they need to change everything about themselves. 

B has Aspergers. He will always have Aspergers. I want him to feel proud, and not that he is less of a person because of any diagnosis. I want him to find a place of happiness and contentment in life. I never want him to feel he needs to change who is to be "normal". 

Of course, there are behaviors he needs to learn to mitigate better, but I don't want him thinking his struggles make him a bad kid. Maybe if we focus on his strengths, the self-confidence he builds will help temper the "weaknesses". 

I'm sure you didn't expect parents to take up several pages talking about their child. I just really need you to know that B is a great kid. No, I don't think my child hung the moon, but I also don't think he is in any way damaged. I think he has incredible strengths that can be overlooked because of a meltdown, or social issue, and those "weaknesses" shouldn't be the focus.

As you can tell, I am passionate about this. No one is perfect, and we all continue to work on ourselves. I just never want B to feel bad because of his neurology. I've been through it with my daughter, and want to keep B from ever feeling that way.

I've heard from other parents that you are the perfect teacher for B, and I'm excited about this year. Thanks for taking the time to read everything I wrote. I appreciate it more than you know. 

So, that's it. I truly hope she takes everything I wrote to heart, and doesn't view me as some whacked out parent. Honestly, I haven't yet moved away from last year (which, if you don't know, did not go well for either kid), but I am also not going in thinking this year will be the same. I can't. I have to hold onto hope that things will be different. That we've all learned from the past, and want to makes things better. Some might call me naive, but I'm not ready to give up. Maybe this year will be the year things go smoothly, and everyone works together for the good of both my children. I have to hold on to that possibility, because the alternative...well, I can't think about that only a few days in.