A New Anniversary

I can't believe it's been a year. A year ago I wrote this and I pretty much decided to completely change my life. I was naive and scared and I had no idea the roller coaster I was in for.

I have no regrets.

Change isn't easy. You don't just wake up one day and think "you know, I think I'll make my life harder today!" But starting over, for me, was first a realization. Then that realization grew and one day I did wake up and said "I'm ready." And now, looking back, I realize that I wasn't ready at all! There is no way to prepare yourself for a total life upheaval. There just isn't. You take the step and feel the air under your feet and hope beyond hope that you land softly.

So, I think the thing people want to know is how the kids and I are doing now.

Me? I still find myself in awe when I describe myself and my life. A year ago I didn't even have my own bank account. Now I just started a new job at one of my favorite places in the whole world (Starbucks. Of course.) I had to learn how to pay bills, along with how to shop at Home Depot and how to kill spiders. And I learned the pride that comes with seeing that paycheck and watching it provide for your needs. Sounds so simple, but it really isn't. Last year we had a Christmas tree with presents all around it. And every one of those presents was provided by some amazing people who love our family. This year, there will be one present for each kid. Those are the presents that I bought and picked with care, and I have to say that I am bursting with excitement over the upcoming Christmas morning. While I am beyond grateful for what we received last year, I am so very proud of our "pauper" Christmas. And I have no doubt my kids will smile just as much.

My new job is coming with two big advantages. One is that I will have insurance. I have not, in my adult life, had dental or vision insurance. When you have my faulty teeth and eyes, that is a major problem. I could weep with relief. The second advantage is that they will be paying for the completion of my degree. Yes, finally, I'm finishing that up! I've already got a semester under my belt and I'm loving it. Yes, the deadlines might kill me and finals gave me an ulcer, but I'm loving it, I promise!

And those are the labels that I find myself wearing. A part time employee, a full time student, and a full time mom. Because even when you share custody, the mom thing is always and forever. I am still getting used to the custody part. While I'm not yet officially a divorcee (which sounds like such a cool word, very misleading) we do have a parenting plan in place and I'm glad. The kids get great quality time with each of their parents and I think they are thriving. While this isn't what anyone plans and hopes for when they first have kids, it isn't as horrific as I'd once thought. My little loves have consistency and they have a Mom and Dad who love them. It isn't all sunshine and rainbows, but it never is. It never was. The progress that they have made in the past year is just astounding to me. A year ago I was worried about regressions and possible behavior problems and speech troubles and all the things that might happen. The road hasn't been bump free but these kids are rocking life right now. I'm so proud of the people they are and the people they are becoming.

There is also this big part of my life that you don't hear me talk much about but that doesn't make it any less. I love a woman. And she loves me. She has a little boy with autism and I love him too. I want everyone that reads this to know that just typing this tiny little paragraph makes me smile like you wouldn't believe.

I didn't know that life could be this beautiful and this hard and this rewarding. I'm so very glad I took the step. I know I'm one of the lucky ones. If you are thinking about changing your entire life, think hard. Because it is hard, in case I haven't mentioned that enough. But for me? Worth it. Oh so very worth it.

Belated Birthday

For those of you who didn't notice, I had a birthday this past weekend.

For those of you who did notice, I'm sure you're thinking This is a grown woman, when will she shut up about her birthday already? Soon, I promise you.

Last year I wrote a little diddy about what I wanted to do before I hit thirty. I have another year to go, but it's fun to look back and see the things on that list that I can cross off. But even more fun is to look back on the past year at all the things I've done that didn't make it on that list.

- I got a job. Like, a thing where I show up and someone pays me for doing things pretty decently. I hadn't had a job outside of the house since the day I went into labor with Diva Girl, and I was so nervous. Nervous no one would hire me, nervous I couldn't do the job if someone did hire me. But I found a great spot for myself with really wonderful co-workers and the most understanding boss in the entire universe. Not too shabby.

- I filed for divorce. Big, scary, grown up thing to do. Not a fun process to say the least. But it needed to happen.

- I figured out what I like. It turns out that for many years I've just sort of absorbed what other people liked and never took the time to figure myself out. And you know what? I'm pretty awesome and pretty lame at the same time. I LOVE pop music, winged eyeliner, rum and coke, high waist A-line dresses, and trying new places to eat. I still don't like driving.

- I've grown as a Mama. I used to always be afraid that I was a bad mother. I'm not anymore. I love my kids with all of my heart and have had to do a lot of hard things for them this year, including some of the things listed above. The time I do spend with them now is more precious to me. And maybe they were even a wee bit too dependent on their Mama. Watching them grow is a beautiful thing.

-I got meds. You guys, this is really one of those things that people don't talk about but I go there anyways. It turns out that crying a lot and being kind of mean and not wanting to do anything is not really me! That is Depression/Anxiety Mamasab. The real me is here! The real me still cries over ridiculous things, but not all day long, and she is actually this really motivated and humourous person who likes sunshine and rainbows and singing really loudly in the car. I feel like myself. Meds don't magically make your life better, but the right ones can enable you to handle your life better.

- I got my nose peirced. Wanted to do that since I was 15. Also, I did get that tattoo and I will get more as soon as humanly possible (in other words, I need mo money.)

-I made a bunch of new friends. Met a ton of new people. That isn't an easy thing for socially inept me, but I'm so glad I did it.

-I kept a handful of old friends. The people who have been through the tough stuff with me and are still around? You are priceless. Many people either dropped me or had to be kicked out of my life because they were downright destructive. But I fought for some friendships, and they are absolutely worth it.

- I went back to school. Third time is a charm, right? But seriously, this is my time. I'm still pretty sure I must be crazy to take this on right now, but playing it safe hasn't been in my vocabulary this year.

-I loved. And have been loved in return. And that is the best gift I could have given myself.

Next year is the big 3-0. I can't possibly top the major spoilage that happened this year, but I'm thinking I can't imagine anything better than a big party. Who's in?

Me smiling the big birthday grin I had all weekend

Blank, Not Boring

I've come and stared at this blog every day for a week. I click on "New post" and look at that big blank space. Then I walk away. Because filling that space as seemed both alluring and very, very scary.

Writing, for me, has been about vulnerability. Sharing a piece of yourself is nerve wracking. It's like saying Hello, here's my heart, please try not to stomp on it. Add in the extra layers of being in the middle of the divorce process and not feeling like I could really say anything about anything, and you've got the biggest case of writer's block that you ever did see.

So, what's an autism mom blogger to do when she doesn't feel like she can write about her kids? There is so much more to talk about, but I'm not quite sure what to do with it, how to begin the conversation. I always thought of this blog as an autism blog, but maybe it isn't. Maybe it's just a my life blog, and my life is full to the brim of many, many more things. I still get daily views on my coming out post, and I'm pretty sure there isn't just a bunch of autism moms coming over to peek at that.

I attended an event last week that featured one of my favorite writers and human beings on the face of the planet, Glennon Doyle Melton. She is the reason I keep coming back here and staring. And she is the reason I am actually writing today. Because she made me realize that I need it. I think everyone has a way to tell their story. Some people draw, some people take photographs, some people cook, some people film, some people tweet, some people dance, and some people do sporty things. It may not always look like story telling, but anything can be, really. I hear that there are even some people who are really good at verbally expressing how they feel. Weirdos. But this seems to be my way.

So. Hello. To old friends, and new. Welcome to a new chapter. Stick around, it's bound to be interesting. Because a lesbian mother of three children with autism, who works and is a full time student and is going through a divorce, can't possibly be boring.... right? I'm sure I'll find something to write about.

Adjusting

New and different can be good. It can be bad. It can be both. It can be neither.

It sometimes feels like the majority of my life right now consists of new and different. Ever since I came out of the closet it seems like everything has changed. Almost every relationship I have has changed. I have a new job and a new van and new people in my life and a new outlook.

Anyone in Autism World can tell you that change isn't always the easiest on our families. We begin summer break this week and the schedules will be different and the people working with the kids will be different and there will be a whole lot of new. But among the chaos of their new and my new and our new, there are some things that never change.

Diva Girl is still a diva. She was awarded the "Spunky Spirit" award at the end of the school year, which surprised just about no one. She's a head taller than most kids her age. Playing with beads and her ipad while perched on the top of her dresser is still her favorite past time. And, much to my dismay, she still loves to sniff my armpits as soon as I break out the tank tops. She's still my girl. And she knows her mama loves her.

Rascal is still a rascal. He was awarded the "Best Smile" award, and let's face it...that just means he is still a happy little fellow who is about the cutest thing you've ever seen. He loves to climb and run and be chased. He is a cuddle bug who still can't figure out that sometimes other people need to breathe when you are hugging them (especially little brother...poor kid gets loved on a little too much sometimes!) He is my big boy. And he knows his mama loves him.

Vlad is still my little hoppy happy flapper. You can find him with a pillow or pillow case at any given moment. He still isn't the quickest to smile, but when he does the sun comes out and the birds sing and it is worth the wait. He is still content to just sit and watch a movie with you, especially Monsters Inc or Veggie Tales. And the boy can chug milk like nobody's business. He is my baby (always will be, even when he's 50). And he knows his mama loves him.

And me? Well, I'm still the same friend and daughter and sister. I still love to get completely wrapped up in a good book. I still have a serious affection for coffee drinks. I spend a lot of time filling out forms and juggling therapists and worrying about communication and complaining about cooking dinner. I am their mama. And I love them like crazy.

So, some things never change. Some things are worth holding on to. Some things are such a part of who you are that you couldn't change them if you wanted to. And as the years go by I'm sure some of those things about my kids will change. They will grow and they will evolve and they will learn and discover who they are. But I bet more than a few of those things will always be true, they will always be an anchor in the chaos. So whenever new and different starts feeling like new and scary, I can come back here and reread this and remember. Some things never change.

In a Book

I love to read.

I was always a book worm. I was the quintessential nerd by the age of five, with thick glasses and a book in hand. I devoured books by the dozen, bringing home stacks of new material home from the library every week. There was always something new to learn, a new character to love, a new world to discover.

I was a mousy, quiet little girl in the corner of the room, with her nose stuck in a book. But in my head? I was a heroine on an adventure to save the world. Or an orphan child discovering her true identity. The corner of the room faded away and I was whisked away to some far off land.

As I grew up, my love for reading grew up with me. To this day, I only carry purses that can fit at least a small novel in them. I reread my favorites at least once a year (and if you are curious, among my favorites are the Harry Potter books, The Books of Pellinor by Alison Croggon, Ender's Game, and Pride and Prejudice. Yes, I love young adult fantasy and I will take recommendations.) I love walking into a book store and being able to acknowledge that I know so little. That I have only scratched the surface. I still have so many classics that I somehow missed, poetry that I've yet to discover, and up-and-coming authors to stumble upon.

There is something magical about a good story. It draws you in and makes you care. You care about worlds that do not exists, cry over imaginary people, rejoice in victories that never happened. You travel to faraway places and distant times. You fall in love. You have your heart broken. You feel the threads, the common stories, that tie all of humanity together. These fantastical creations become a part of you and shape how you view the world you do live in.

Oh, there is nothing like a good book.

Today, I find myself hoping. I find myself hoping that one day I can introduce at least one of my kids to Harry Potter. Or Lizzie Bennett. Or Anne of Green Gables. And that they would find the same joy and sorrow and rapture in those pages that I do. It may never happen, I know. But today I just hope, for their sake, that it does. It is the thing I want to share with them more than anything else in this world.

Today, I am going to start reading my books from Samantha: An American Girl aloud to Diva Girl. Maybe she will ignore me. Maybe she will come look at the pretty pictures of a girl who looks a lot like her. Maybe I will feel like I'm talking to myself. I have saved these books from my childhood and have held on to them for my own little girl. So maybe, just maybe....she will like it. Wish me luck.

Tirelessly

Oh, how I've missed writing. I've missed talking into space and occasionally hearing something back. I feel a bit like this safe space got jerked away from me, but today when I thought about it I realized that it is only because I let it be.

So.

Today I have a bit of a rant. A rant against a word I hear, time and again, that drives me crazy.

You hear it in speeches, you hear it when people talk of their admiration of someone. "So and so has worked tirelessly..."

We need to retire this word.

No one is tireless. No one. No autism parent works tirelessly against the maddening and frustrating systems of healthcare and schools. No advocate works tirelessly to stand up and speak out. The progress makers and law changers and life embracers all get tired. They aren't some special brand of better human.

The word has been used to describe me before. Though the person meant it as a compliment and a testament to my hard work and dedication to my kids...it felt like a ton of pressure. I felt put on a pedestal that I knew I would come crashing down from in only a matter of time. What would happen when I did get tired?

What I've found out is that we all get tired. We all need a support system and a pat on the back. We all need people to vent to and cry to (and people who will kick us in the butt when we need it.) We need to know we can get tired and it is okay.

Let's work tiredly instead. Working tiredly means that it is hard, and you want to give up, but you keep going (and by keep going, I mean that sometimes you stop for a good cry and a nap and ignore the issue entirely for a little while until you are ready to deal with it again.) Yawning all the way. Yeah, working tiredly is more my speed. And I have a feeling, if you're reading my blog, that it is more your speed too.

Today is my break. I'm healing from sickness and I'm in need of a little heart and soul work. So I took a luxuriously long shower and primped to my heart's content. I spent at least ten minutes trying to get a perfectly winged eyeliner look. I'm ignoring the dishes in the sink and the laundry in the basket. I'm getting a few extra kids cuddles. I'm prettying my body and my soul today. Because I got tired, and it is okay to admit that. Tomorrow is a new day and I will tackle it when it gets here...but today belongs to the repair of the weary.

Keep on keepin on, friends.

My eyeliner game is on point today. Just in case you didn't notice.

What do you expect?

This week we had our annual IEP meeting for Rascal. Prior to the meeting, I was nervous. Nervous because I anticipated having to ask for something and I was afraid of a fight. I don't like confrontation. I'm kind of a wimp.

I ended up being pleasantly surprised. Shocked, really, when they already had goals and services added to address the issues that I came in concerned about. I had this moment where I got to look around the room and see, not people I had to fit against, but allies. They aren't perfect (they are people, after all), but they know my child. They love my child.

Earlier in the year I never would have guessed that things would have gone so smoothly. Rascal had a tough time transitioning to his new classroom this year and we even had to call in someone from the district to see if he should be in a different room. Back then, I was hurt. I would have sworn that his teacher didn't like him at all, that she wasn't willing to do the work to help him fit into her class. Honestly, I didn't think all too fondly of her and I didn't expect much of her.

I was wrong.

Looking back, I see that she was a teacher with 20 years of experience who had never had a kid quite like my Rascal and wasn't sure how to help him. She wanted him to thrive and learn, and was worried that he wasn't in the best place to do that. She didn't just look at him and see a problem, she looked at him and saw a little boy who needed more than she knew how to give.

In the end, she got help on how to help him. They learned how to speak one another's language. She grew in her confidence with him and he grew in his trust of her. And oh, I am so glad that he ended up in her classroom, because I can't imagine any teacher doing more. I am almost ashamed of how I used to think, of how low my expectations were and how wrong my assumptions were.

So often I think us special needs parents are in battle mode. We have all seen our kids be treated poorly, we have all had to fight for rights and services, we have all been hurt by the words and actions of people we thought were going to love our kids. I can't help but wonder if sometimes we just get stuck in the mentality that the people across the table are on the other side. And before you jump down my throat with But MamaSab, you don't know what it's like to have a truly awful teacher/team!, trust me when I say that I have.That is where I am coming from and why I had the mentality that I'd had. I've sat in a room and felt like no one in that room had any hope for my child, and it is one of the worst feelings in the world. What I am saying is don't let those experiences color all the future interactions you have with new teachers and new therapists and new teams. Don't always expect the worst and assume you are in for a fight.

Sometimes, you meet people along the way who want to help. Who love your kid. I almost missed out on seeing that. I hope you don't.

I'm Not Lost

Well, I didn't mean to fall of the face of the planet. But as you can imagine, I've been dealing with quite a bit after dropping my big coming out bomb. And, unfortunately, my laptop died and I haven't had a computer for a few weeks. Let me tell you, I have missed sitting at a keyboard and typing.

I think there has been a collective intake of breath and a question hangs on everyone's mind- Now what? What are you going to do?

I've been asking myself that question for weeks, months, years. I never saw myself here. I never saw myself with three kids with autism, facing a divorce. I never saw myself coming out of the closet and being vocal about my uncertainty in the religion I was raised in and professed for my entire life. This was not the plan.

But then, I've made a lot of plans in life and few of them panned out. I'm not really interested in thinking of a ten year plan at the moment. What I am interested in is figuring out what I want, which isn't quite the same thing. I'm interested in continuing to learn about myself and then following through on what I know that I want. What am I passionate about? What kind of life do I want to live? What kind of home do I want to create for my children? These are the questions that I find myself laying in bed at night, answering in my head.

Here's what I've got so far.

I am passionate about people. About changing lives, in small ways and on a large scale. I want people to think of me as a helper. In the year to come, I want to continue doing my job, which is providing women with a space to relax and pamper themselves and just plain feel good. I want to help change the laws in my state, both in the realm of autism insurance reform and lgbt rights. I am eager to help my parents as they begin a non-profit to provide financial assistance to families affected by autism. These are all things that challenge me and push me out of my comfort zone, but I think are completely worthy of my time and effort and discomfort. To know that you have helped people...is there any better feeling or purpose?

I want to embrace all the other things I'm passionate about. Reading good dystopian novels or young adult fantasy. Watching my nerdy shows like Doctor Who and Sherlock and Firefly (you can't rewatch it too many times). I want to keep trying new foods but also come to terms with the fact that I will never be Betty Crocker. And dancing. There must be dancing, there has been far too little dancing in my life.  I know people use the phrase "gay lifestyle" a lot. I don't really know what that means. The lifestyle I want involves nerdy fandom, poetry, red lipstick, cute dresses, dancing, late nights with kids who don't sleep, snuggles with three little loves, binge watching netflix, crockpot meals, holding hands with a woman I love, liquid eyeliner, IEP meetings, and writing in this very blog. I just want a life that embraces all the things that make me, me.

Part of what makes my life good are the three little ones who look at me as their Mama. I spend a lot of time thinking about the life I want to create for them. I want their home, or homes, to be a peaceful haven. I want to teach them about being strong. I want to create a better world for them. Then I want to be sure that I teach them how to navigate this big crazy world that is so much harder for them than I could possibly understand. All three of them have birthdays approaching and I find myself swinging back and forth between nostalgia and looking ahead. It's true that the days seem so long and the years feel so short. Their futures are a mystery to me, much as my own is. I think we will all just have to hold hands and step into our futures together.

Yes, I've got a lot to figure out. I used to feel like that was some kind of weakness. That not having it all together would mean that you are falling apart. But I don't feel like I'm falling apart, I feel like the opposite of that. I'm growing up and taking responsibility and saying things with more certainty now than I ever have in my whole life. Even if the words are "I don't know", I can at least say them with confidence and security in who I am. And that, my friends, is a wonderful thing.

Who You Are

We sat down at the Parent Teacher conference with hopes of hearing good news. What I didn't realize at the time, was just how good the news could be.

They love my girl. Diva Girl has won the hearts of the entire school, it seems. Her two teachers, one regular education and the other special education, were eager to show us her progress but also to just talk about her personality. And let me tell you, the girl has personality. In fact, one of the first things said about her is that "She has such a big personality!" Ain't that the truth. The other words phrases we heard? "I love how sassy she is!"  "All of the kids love her." "She is so full of spunk!" "She is a hard worker, she loves to work." "She is so smart."

Those words just filled me up to the gills with pride. 

Yes, Diva Girl has autism. Yes, she has struggles. But that isn't what we focused on. We focused on these other words, these other descriptors that show every bit of who she is. I felt like they could see her. Not just her disability, but the whole of her. I am in no way ashamed of her autism, but she is so much more than just one label. She has many labels, many words that make up who she is.

All I want are for people to see them. Truly see my kids for who they are. I want them to see Diva Girl's sassy confidence. I want them to see Rascal's sweet heart. I want them to see Vlad's inquisitive mind. There are so many words to describe each of them. Smart, contemplative, beautiful, funny, silly, eager, hyper. She is a daughter and a sister, they are sons and brothers. They have depth and character and the capacity for so much more than one word could ever convey. 

So, when people see what I see in them, I get pretty excited. Really, I think that anytime anyone is truly seen for who they are, that is a beautiful thing. Diva Girl has no qualms about showing her truest self to the world. In her childish honesty, she has won the affection and love of everyone from the kids in her classroom to the vice principal. I couldn't be more proud.

Celebrate the Small

I do it all the time with my kids.

Licked a fruit? Celebrate!
Said a word? Party time!
Went to the bathroom? Let's have a freakin parade!!!

With a kid on the spectrum, you tend to celebrate a lot of small victories, because they are no longer small at all. The hurdles are high and it takes all that they've got to get over them. And when they make the leap and land on their feet, I'm there to applaud and rejoice and be proud.

So why can't I do that for my own bruised self?

I was abundantly vulnerable sharing my struggle with anxiety with you all. I don't know that I've ever received such an outpouring of love and support. You told me that I'm not alone. But I still find myself going through a whole lot of mental self abuse.

I make a phone call. And instead of celebrating the fact that I did it, I berate myself for struggling to make it in the first place. Big Deal, Anxiety Me says, So you did something that every normal adult does all the time. And I feel weak and childish for even feeling a moment of pride in the accomplishment.

And if the call doesn't go well? Oh, then I may as well call it a day.

Why do I do this? Why can't I take pride in overcoming my anxiety? Why do I make it another way to beat myself up?

I don't have an answer. But I do know that every day I celebrate victories for my children. I see them struggle so much, so seeing them succeed is even sweeter. Maybe I need to take a lesson from myself here. Maybe it is time to celebrate the small, for myself. Maybe, just maybe, I deserve it. I'll try to get that through to Anxiety Me.

The Halfhearted Hippie

Have you ever been bitter about something for years without even knowing that was the emotion you felt until it hit you like a ton of bricks?

Well, if you haven't, just pretend with me. I'll start from the beginning, I suppose. 

I've always been fairly "natural minded". I have no idea where the inclination comes from. But I'd picked out the midwife group I would use prior to even becoming pregnant, at 19 years old. I knew I wanted to do things naturally for birth, and of course my research crazy self went on to discover breastfeeding, cloth diapering, attachment parenting...and when I started out as a young mom, I was so very proud of myself because I thought I was doing the very best for my baby. I mean, everything I read told me that by doing all these things, my kid would be healthier. As Diva Girl grew, it seemed like she had that promised health. She was rarely ever sick, never needed antibiotics. Her development was perfect. She happily munched on all manner of organic veggies (I was so incredibly obnoxious, I'm sure, bragging about how much she loved broccoli.)

And then? Shortly before her third birthday she was diagnosed with a rare autism spectrum disorder, Childhood Disintegrative Disorder. 

I felt....cheated. I was doing everything right, how could I end up with a child with, you know, "issues"? So then I thought- I can fix this! I read and read and saw people using diets and vitamins and I thought- YES! Up my crunchy alley!

Only, she didn't get better. She just ate less. And still lost skills and words.

So, we stopped. I mean, I still went on to have two homebirths and nursed the boys and that kind of stuff. But any time someone would suggest something "natural minded" to me, I would pretty much ignore them. A little part of me would just think- yeah, right, like that would actually work.

And I never really realized that somewhere along the way, I'd become this incredibly bitter person. I was so angry that I did all this research and invested so much of my time and effort and money and belief into a "natural lifestyle" only to be let down by it. And then, the almost daily barrage of people "informing" me that they or their cousin's sister's best friend's daughter had cured their kid by doing GFCF/going all organic/cleansing toxins from vaccines/using supplements. Each suggestion was like an annoying kick to my wounded self. I became defensive of my previous attempts at some of these things and of my current penchant of feeding my kids gluten laden nuggets and milkshakes. So somehow, all of this swirled around in my brain and I became this really inwardly nasty and closed off person from almost anything anyone would suggest to me to help anything from a cold to sleepless nights.

Of course, eventually I realized that I'm not looking to cure Diva Girl, especially after Rascal and Vlad came along with their own diagnoses. And I am sure that there are families out there that have been helped by the things I listed above. But my family isn't one of them. And that's ok. 

So I need to let it go.

I need to not get insanely defensive when someone recommends garlic and honey for my cold. I need to not go all inward eyeroll when anyone mentions GFCF. I need to let go of the bitterness. Because really, we are alright. Actually, my kids are fairly fabulous. Plus, they probably could use a good probiotic and multivitamin. And I kind of miss being a hippie sometimes. Maybe now, though, you can just call me the halfhearted hippie. 

Life is Hard

So I've been seriously obsessed with "Life is Hard" by Edward Sharpe and the Magnetic Zeros. Take a listen:

This song. It makes me want to smile and cry, hug the next person I see, and be alone, and dance, and sit, all at the same time. This song is like truth set to music.

This is how I so often feel. As though I'm conflicted in my very being because I think life is both absolutely beautiful and unbearably hard. 

Having kids with autism = hard. Exhausting, frustrating, heartbreaking, headache inducing. It's also amazing, illuminating, beautiful, and inspiring. Nothing has pushed the boundaries of my sanity more or pushed my personal growth more. So often I fear that people see me and think that I manage to laugh and work hard and love life in spite of having three children on the spectrum. Truth is, it is because of that very fact. 

And that is just life. There is good and bad and mundane. There is good in the bad and bad in the good. And I, for one, am one mess of a human being. Right now everything feels so big to me- a new home, kids in school, the full realization that our family is done growing and that our family is special times three. And a whole lot more that I won't blog about because believe it or not there are some things I keep private. But it's all big- it's very amazing and very scary and very emotional. 

When I think about it all, my first instinct is to say that this is just a small point in time, a phase of these stressors that will come and go. But I've been saying that for a while now. "Oh, right now things are kind of crazy!" has been my motto for about four years. I think it's time to accept it- this is life. That somehow feels freeing and wonderful to just embrace that all the chaos is just simply life. 

Come celebrate- Life is hard!

Changes, changes, everywhere!

Well, hello there. Did you miss me?

The last few weeks have been a whirlwind. Let's recap:
I went out of town to a conference on 7/24
I came back on 7/28
We commenced moving into our new home on 7/29
Diva Girl's last day at the therapy center that she's attended for three and a half years on 7/31
Diva Girl and Rascal's first day at their new school on 8/1

Guys. I'm a mess.

Now, these changes are all great, grand, wonderful! It's just that they are happening all at once. But, in the end, I'm so very glad things have played out this way. Yes, it's been chaotic and it feels like I can't quite catch my breath. However, the past week has not only stretched my sanity, it's stretched my imagination.

I've never been a big dreamer. I'm practical to a fault. The conference I went to, I have attended once before, and my "practical" side kept me from enjoying it. See, I was surrounded by all of these positive, amazing women...and all I could think was "Yeah right, like I could ever be that successful. Or that happy. They are probably just faking it anyway. And even if they aren't, I don't even want to be like them. So there."

Real mature, right? The green of jealousy does not look good on me.

I ended up quitting my business not too long after that conference, convinced that I didn't have time for it and that it was probably just not for me anyway. Diva Girl was newly diagnosed, and I saw the few simple dreams I already had slipping away.

For the last few years, I've done a lot of focusing on the negative. The challenges faced, the sacrifices, the frustrations. As upbeat as I try to be, the back of my mind is always working on an unhealthy dose of anxiety and pessimism. With the diagnosis of Vlad, my inner voice took a pretty dark tone. All I could really think was- we will never have enough money, they will never have what they deserve, we will have three children who are dependent upon us forever, and poverty and depression will be my constant companions until the day I die. Yes, that was what I thought, behind smiles and the jokes.

And I am ashamed of myself.

That inner voice is bound to whisper again from time to time, but the past two weeks have changed my inner dialog drastically. This time, when I was surrounded by amazing and positive women, I found myself asking "Why not me?" I found myself realizing that I was going home to a new house that I never thought was possible. That my third child would be going to a therapy center that we have never been able to afford, but have been a part of for three and a half years. That week to week, we have people help us and reach out to us. Dreams have been fulfilled before I even knew that I should dream them.

So, why not imagine a better future? Heck, why not imagine a better now? And not just imagine it, but work towards it, sacrifice for it. Why not say "I can. They can. We can." Why not plan a vow renewal for our tenth anniversary (two years away tomorrow!) and a family trip to Disney? Why not plan on three kids going to college? It's all possible. And maybe it won't all happen the exact way I hope it to, but isn't it better to reach for the stars and make it to the clouds, than stay planted to the ground because I didn't even look up? I think it is.

So, here I am. In my new-to-us home. Working harder and dreaming bigger than I ever have before. And it feels pretty good, even if I am still a mess. Don't worry guys- there are some things that never change.

Letting Go

Eight more nights. Eight more nights of sleeping in this apartment, typing from this couch, listening to the whir of this old washing machine. I can't wait.

We will be moving into a house. A real house, no shared walls. Windows on all sides. A yard, a driveway, a fence. All the things we've never had. With the new home, we've been blessed with new (to us) furniture; couches and a dining room set among other things. 

I am terrified.

Why? Well, I'm not exactly a good housewife. I'm a pretty lousy one, at best. I have little to no idea how to decorate a home, how to make a place look....well, like anyone would want to live in it. See, we have been in survival mode for years and years now. I've never considered anyplace that we lived to be a real home. 

In case you didn't already know, this is our past home history:

-Married while in college and lived in what was essentially the "family" apartments on campus. Tiny. We furnished and decorated like college students, which is to say minimally and poorly.

-Hit rough times and moved in with my parents for almost two years.

-Spent several months basically couch surfing...essentially, we were homeless.

-Amazing friends took us in. We lived in their unfinished basement for almost a year.

-Back to the apartments at the university.

-Moved up in the world into where we live now- a two bedroom apartment. Furnished with whatever free furniture acquired over the years.

So, for a while, we've just been happy to have a safe place to lay our heads. We've never had enough room for all of our stuff. We've always had more kids than our space could reasonably hold. And these kids come with so much...so many therapist recommended toys and therapy related tools. Add in our addiction to books and my business products, and we are bursting at the seams. So somewhere along the way, I gave up. The mess always won, so why really fight it? Yeah, I sweep the floors (that I can see) and wipe the counters (some days), but overall I just kind of manage the mess, not conquer it. 

*Sorry Mom, I know this must be killing you to read*

I've known for a while that I have a problem with possessions. It goes hand in hand with my obsession with money. Almost everything I own was given to me. When you are poor and everyone knows it, people tend to give you things. And trust me, I am grateful. But, here lies my problem: It doesn't matter that I don't like jeans with holes in them- they fit me and someone gave them to me for free and I can't afford to go shopping. So, I end up with a closet bursting with clothes that I, at best, like okay, and at worst, don't hate too much. But I can't get rid of anything because I can't afford to replace it if I ever miss it! Go through this same mental song and dance with kitchen wares, kid toys, books, and just about any other item you might find in your home. I've had a tight grip on all of this stuff because I might need it. Or, sometimes, I held on because it fit some expectation I had. As though by possessing a certain toy, my children would show some new magical interest in imaginary play, or by owning an array of cookbooks, I would become a competent cook. 

So, I'm letting go. I'm shedding the drawers full of clothes that only "kind of" fit me. (As an aside: Prepare to see me wearing the same outfits. A lot.) I'm lugging away bins of toys that came highly recommended but have only been chewed up, lined up, or thrown. And the impractical items held onto for some imaginary future need? Gone. 

I feel lighter already.

I'm ready to step into a new home and not immediately clutter up the kitchen counters and dining room table. I'm ready to find a place for every thing. I'm ready to have a home I'm proud of. And bit by bit, I want to work towards replacing things that I loathe but hold on to out of necessity, like our not even close to full set of dishes or our threadbare sheets. I'm ready for my home to not be a place that so obviously stresses out my children and myself. I want to create a haven for our anxiety ridden spectrum family.

I know this won't solve all my homemaking problems. I still will be seriously lacking in practical storage. I still have zero home decorating skills (and a zero budget to decorate on.) And I still have three messy children that always come with plenty of stuff. But this is a start, a step in the right direction.

Goodbye stuff. I won't miss you.

For the Love of Money

Money. It makes the world go round. You need it, you love it, you hate it.

If you've ever known poverty, you may understand what I mean when I say that money is my obsession. My life often seems to revolve around our lack of money. I am constantly trying to think of how I can stretch it, where I should spend it, and how I can make more of it. Nothing can make me feel more ill or bring me to a panic attack more quickly than thinking about finances, or our financial future.

I keep expecting things to change. I keep looking to the future and expecting to be in a better spot, only to find myself still struggling when I get there. I was never one to think I was going to end up with some large house and a nice nest egg. I did marry a pastor, so I knew that in all likelihood, there would be a whole lot more "poorer" than "richer". But autism changed not only how we would spend our money, it seriously impacted our ability to bring it in in the first place. And with each diagnosis, I felt our future financial stability crumble bit by bit.

Autism families struggle to pay the bills. Whatever money we have goes to giving our kids the best shot at success. I've seen families that are easily middle class still struggle with keeping the lights on. It happens much more than you would ever believe. To add to the stress of the now, we also look to the future and have no idea what to expect and what kind of help our kids may need for the rest of their lives. My kids may grow up to be financially independent. Or they may not. I can't count on either, but have to prepare for the likelihood that they will need us. Considering that I am currently able to provide for them fully, this thought overwhelms me. Every bit of pride I have just cowers in shame and fear.

I don't feel like a bad parent because I sometimes yell. I don't feel like a bad parent because I let them watch plenty of Disney movies or don't play outside enough. I feel like a bad parent because I need help just to keep them clothed and fed and housed and therapied (is that a word?) People tell me all the time that my kids are lucky to have been born into this family and so often I think that if they were lucky, they would have been born into a family that had plenty of money to care for their distinct and sometimes overwhelming needs.

I know that money holds too much power over me. When I drift off to sleep, night after night, trying to calculate how much I need to sell to make ends meet, I know that I've reached an unhealthy place. When a little light blinks on the dashboard of my minivan and it causes an instant pounding in my heart and drop in my stomach, I've reached an unhealthy place.  The fact that money brings about such strong feelings of shame and embarrassment and jealousy...well, that's not the kind of person I want to be.

I want to be the kind of person that works hard and goes to bed at night knowing that I've done my best. And letting that be enough. I want to be the kind of person who looks at pictures of my friends on vacation and is happy for them, not envious. Yes, our financial situation needs to change. There are things I can do to work towards that, and I am doing them. But more importantly, my attitude about money needs to change.

I don't want to let money (or my lack of it) rob me of joy. Life won't get put on hold until my finances look better. And let's be honest- would I suddenly find myself full of happiness the moment my bank account has more zeros? Probably not. Especially if I spend my whole life obsessing over money and feeding into negativity and misery.

So, today I'm going to start. I'm going to be grateful for the help we've had instead of ashamed. I'm going to be grateful for the home we are moving into instead of obsessing over what we can't buy for it. I'm going to enjoy my children today and hope for the best for their futures.

There are so many people in my life to cherish...I'll save my love for them.

Change Looms

In the next couple of weeks, my life will completely change.

Two weeks from today, we move into a new home. Three days later, Diva Girl starts Kindergarten and Rascal starts Preschool, in a completely new school. Eighteen days after that, Vlad starts attending an autism therapy center.

There will be so much newness. New therapists, new furniture, new clothes, new schedules, new routines. And as much as I love all of these new things, as good as these changes are- it's a LOT to handle. I fare only slightly better than my kids on adjusting to change.

Will there be meltdowns? You bet. Will there be anxiety? Already there. But I keep reminding myself that before we know it, we will be settled. Settled into our new home, with space and a yard. A yard. Our days of 2 bedroom apartment living will be over! The kids will be settled into a new school, a school with a spectacular reputation, a school that I hope and pray they love.

The best part of it all? I will have three hours, Monday through Thursday, without kids. Which I will absolutely need, since the moment I pick up Vlad, life will become absolutely insane. Between the three of them, there are 6 hours of speech, 4 hours of OT, 7 hours of behavior therapy, and other random appointments every week. How we will find the time, outside of school, I have no idea. But those three hours? They are mine. I can nap. Clean my awesome new home. Work my business (yes, I have a business on top of all this.) Have coffee with a friend. Talk to my husband without interruption from tiny people, before midnight. My mind is spinning with all of the possibilities!

So yes, lots of change is on the horizon. And while I don't love going through it, and I'm sure my kids won't either, I know that change is good. I just have to take a deep breath and brace myself.

3 hours a day. Light at the end of the tunnel.

Ordinary Moments Turned Into Beauty

I've been quiet here for about a week. Why is that? Because I'm terrified.

I had one crazy stalker person. I had one post that got a bit of attention. And that is scary, because in the world of autism blogging, attention is a double edged sword. It seems that no one can escape being raked over the coals for one thing or another. I've been honest enough in my blogging, honest enough in my struggles, that the idea of people looking over this with a critical eye makes me feel a bit sick. I've seen it happen to others, been watching it play out in the blogosphere all day.

I'm not sure I have the stomach for that.

You see, I'm not the kind of blogger that writes all about how my life with kids on the spectrum is sunshine and rainbows. I don't present Autism as a gift given to my children to make them extra awesome (they got their extra awesome in various ways, obviously.) There are times I indulge in a bit of self pity, and there are times I indulge in a lot of humor. I write from my heart, and my heart isn't always pretty. Life isn't always pretty.

I'm okay with that.

If everything was beautiful all of the time, would it be possible to truly appreciate beauty? It seems so often that it's the difficulty in life, the strife, that pushes the ordinary to be exquisite. And as I make our struggle  public, I attempt to make our joy public as well, and pray that it is all the sweeter for it. That's what I've been reminded of tonight.

Tonight, Rascal handed me a toy. He handed me a princess phone and hopped up and down, grinning ear to ear, looking me right in the eyes. And that's when it hit me. He was inviting me to play.

I put that phone to my ear and said "Hello? You want to talk to Rascal? Oh, okay, here he is!" And I handed him the phone. Rascal stopped hopping long enough to hold the phone up to his ear and answer "Hello?" He grinned at me again, and handed back the phone, and we went back and forth for a minute before he ran off. No big deal, right?

Wrong. So very, very wrong. This was beauty.

This was the first time my child truly invited me into his play world. The first time I was handed something without being reduced to a mere fixer or fetcher. It took me a second to even recognize that he wasn't handing it to me for me to turn it on or off or change it in any way. He wasn't handing it to me so that I would get him something. He gave me a toy so that I could play with him. With him. The moment I realized that, tears came to my eyes and I was in absolute awe.

It was an ordinary moment. Children do this all the time, every day all day. Children much younger than he is. Mothers all over the world take it for granted. And for us, it was a moment I will never forget, a bloom of beauty at the end of a hard day. Perfection.

You know what's even better? Half an hour later, he handed me Buzz Lightyear. My heart, it overflows. I'm crying with pure joy as I write this. Some of you reading this will understand. You've had these ordinary moments that were far from ordinary.

So yeah, I'll fess up to all the moments of feeling sad and alone and overwhelmed. I will talk about the lows, the ways that autism affects my marriage, the moments that I lose my cool. And then I will sing from the rooftops the highs, the moments that people step up and help out, the moments that I get to brag on my kids. I don't think I'd trade such high highs for anything. Not a darn thing.

And this kid? My little playmate? He's a Rascal.

Fraternizing with Typical Folk

Today I met up with a local group of moms at a coffee house, with Vlad and Diva Girl in tow.

Crazy part of this story? They all had typical kids. It wasn't a meetup of the mom's in my special needs group, or of the ones from the autism therapy center. Just a group of local moms that generally follow attachment parenting. Did you even know that I did that? I'm a homebirthing, babywearing, former cloth diapering, cosleeping, hippie. Believe it or not, I have interests and an identity outside of autism.

Or at least, that's what I like to tell myself.

Honestly, I've stuck mostly with my autism mom friends for the past few years. I have a couple of close friends who have walked through this whole thing with me that have typical children, or no children at all. But in general, I don't go seeking out anyone outside of Autism World.

So, why did I this time? I'm not entirely sure. I guess that sometimes I get tired of my life revolving around autism, especially when there are other aspects of my parenting that I enjoy talking about. This group also meets up to walk/run/hike....all these things I think about doing and want to do, but never actually do. I've been a part of this group on facebook for a good 6 months and still hadn't attended a single meetup even though I had the best of intentions. Why? Because, well, I was scared.

I was scared that I would talk too much and have too little in common with them.
I was scared they would judge my kids. Judge my parenting.
I was scared that no one would talk to me.
I was scared that I wouldn't be able to shut up about autism.
I was scared that they would pity me.
I was scared that I would be jealous of them.

You know what? None of that happened. I mean, I did talk a bit too much about autism. Not sure if I can altogether help that. But I also talked about babywearing and beauty and houses and all these other gloriously normal things. My kids were great. Vlad tottered around and then passed out while snuggling with me in his carrier. Diva Girl munched on ice and crackers and played on her iPad. She may not have seemed social, but she had a blast. Everyone was nice. I laughed, and related, and was only slightly awkward. I didn't just survive that gathering, I actually enjoyed myself!

I can't help but wonder how many times I've deprived myself from going out and enjoying time with others based on those fears. They aren't completely irrational fears, I have good reasons for every one of them. People have been ignorant and hurtful at times. And at other times, I have been too deep in the depths of the grieving process to allow myself to enjoy the company of those who don't understand this journey. But I don't have a good reason to let those experiences stop me from trying again. It's not something that I allow from my children, so why should I push myself any less than I push them? You pick yourself up, brush yourself off, and try again. Today, I'm glad I did.

Now, I have no idea what they thought of me. But I think I will go back. I think I can handle just a bit of life outside of the autism bubble. Here's to hoping that they let me stick around.

I confess: I tried really hard to make sure I at least looked normal today/

We Are The Few: Vaccine Free and Autism

We all know that we shouldn't read the comments. If you don't know that, step on over and read my post Never Read The Comments.

But what about when the comments come to you? What do you do when a person actually tracks you down and messages you on facebook? I put myself "out there" a lot in the autism community, so maybe it was bound to happen. I don't use my name or my kids' names on this blog, because I am trying to keep them safe and keep some semblance of privacy on the web, but let's face it: privacy and the internet don't really mix.

So, a stranger messaged me on facebook. They "heard my story" and wanted to educate me on how vaccines caused my children's autism and that they could be saved by chelation and nutrition.

I should have ignored. I should have blocked them, maybe. But I have this irresistible urge to educate, so I took the bait. See, I don't talk about this much, but all three of my kids stepped into Autism World completely vaccine free. And I admit, I have a bit of fun telling people that are steeped in the Vaccine Theory this fact. Sometimes they backpedal, sometimes they are simply glad to hear that my children are not vaccine damaged, and sometimes....well, sometimes they get belligerent.

This was one of those times.

Stalker (this is what I will call the person from here on out, just seems more fun that way) quickly comes back with "Are you sure???" This is not even the first or second or tenth time that someone has asked me this.

No, I'm not sure. Someone may have stolen them away in the night and pricked them while I wasn't looking. Of course I'm sure! These are MY children we are talking about. I birthed two of them in my home for goodness sakes. You think that they could have possibly been vaccinated without my consent or my knowledge? Sorry, that just isn't the case folks. I very politely informed Stalker that is isn't possible, and that my family obviously is a case for their being some genetic issue at play.

"There is no genetic disease that cause autism, it's all lies!" says Stalker. It is implied that my husband may have taken them to get immunized without my consent. Again, nothing I haven't heard before.

At this point Stalker begins asking more questions, and I simply end up replying that I was uncomfortable further discussing my personal beliefs and my children's medical history with someone who I don't know and who hasn't even told me where they got information about my family. Sorry Stalker, I got tired trying to educate a paranoid creeper. And this is where it got very interesting. Up until this point, it was all stuff I had heard before, all things that I am used to hearing from hardcore Vaccine Theory folks.

Stalker, apparently unable to compute that my family falls outside of the neat box they have tied up autism in, then accuses me of "hiding something." I won't subject you to reading the full rant, but I will give you the gist of it- I have been accused of being paid off to lie (I'm assuming by The Government) about having three children with autism who are vaccine free. I am a sick person, getting other people to hurt their children, all for the love of money.

Well, that's a first.

Check out my children who don't really exist, apparently!

Because I simply couldn't resist having the last word, I replied one more time. Facts that only stand upon the insistence that others are lying are on very shaky grounds indeed. And with that, I blocked Stalker (who never did say how they got my name and information about my kids.)

I wonder how many more times I will have to play out this series of questions and if there will be others who take it to this extreme. On the one hand, it is entirely laughable to me that anyone would believe I'm making all of this up for money. But the sad reality is that we are in the financially devastating place of having three amazing autistic children who are going to need very expensive therapy for many more years. Makes me kind of wish that Stalker was right. I could use the dough.

What I'd really like to know is, where are the other families like me? I know my children aren't the only weirdos that are on the autism spectrum without a single vaccination. I wish this were an actual popular autism blog, because I truly want to know how many other moms are dealing with this exact same thing. So, if you stumble upon this and you happen to be a lying, money grubbing conspirator too...raise your hand high and proud! Leave me a comment and stand with me against those who refuse to believe we exist! It'll be fun, I promise.

*Disclaimer: I am not interested in discussing why we didn't vaccinate, or why you don't vaccinate, or why anyone on either side of the issue are wrong. Comments tearing others down for making the best personal and medical decisions for their family will be deleted. In other words, play nice. Unless you want to tear Stalker to shreds, that's fair game.*

The Middle Kid

Rascal. My dear, sweet, middle child. I look at this picture of him, and I smile because I see him rolling his bag like he's ready to go take on the world all by himself. When I think about Rascal, I think about his independent spirit, his love of adventure and diving into life headfirst, and his easygoing nature.

Unfortunately, I took to much of that for granted. I assumed too much.

See, this summer, Rascal has been thrown off his game. At three and a half years old, he has spent about half of his life in a fairly routine schedule, first at a therapy center and then at school. But this summer he has no regular routine, he has no classes. We thought he would be okay, with that. Unfortunately, he is adrift.

This summer seems to have been a perfect storm to create trouble for my little guy. It hasn't just been the lack of school. There has been a lot going on with the other two kids. You know, the less "easygoing" ones. And between the diagnosis of Vlad and the behavior issues of Diva Girl and trying to just survive a few weeks without The Husband, we let a lot of things slide with Rascal. Without even realizing it, I was doing much less with him and expecting less from him. We stopped expecting him to speak his requests because the other two aren't, and we could anticipate his wants and needs for the most part. It was easier, less time consuming. It was also wrong.

And now? Well, we have a little boy who stopped eating anything from the fruits and veggie department. His overall food intake has probably dropped about 50%. You never know when he will melt down over a train track not connecting well, or the expectation that he say "hi" to someone, or the demand that he put something away. He's not as happy.

Oh, the guilt!

I'm trying very hard not to beat myself up over this. I know he will be okay. We calling in some great therapists and we are committing to following through with what we know he needs at home. We've learned from this summer, and we know we won't let it happen again. But it just breaks my heart to know that I failed him. And even worse- that I know it won't be the last time that we make a mistake like this. With three kids on the spectrum, it seems impossible to meet everyone's needs, all the time. They all need so much, and they are all so different. How will we manage to give them all the individual attention they need? Don't even get me started on the financial aspect of providing them with the therapies they each need to be their best...

Deep breath.

Today is a fresh beginning. A new day with three little kids who are more than happy to teach me new lessons in life. Rascal, I will do my best to not let your middle child status and easygoing nature lull me into thinking that you somehow need less. Lesson learned, ok bud? Now...let's get to work.