"What's wrong with those kids?"

As I was walking the boys into school this morning, Gage covered in the soda he'd just spilled on himself and Gamble happily chewing on his right shoe, I heard a little voice above their vocal stims, "What's wrong with those kids?"

I couldn't just ignore it, the little girl had asked a question, and while it was certainly aimed at her daddy, I knew he had no clue. So, while still walking forward, I turned around and told her "They have autism, they don't talk yet - but they really like making noises, just like other kids like to talk and ask questions."

She accepted it without further question, and her dad accepted Gamble's offered hand, returning his smile, as he asked some more questions: Do they have any means of communicating yet? Sign language? (I'm very in tune with them, but no, they don't really have many communication skills just yet). Are they twins? How old? What are their names?

It was a nice conversation, I didn't feel like I needed to defend my boys, but I felt like I wanted to answer the little girl's question, just like I wanted to answer the boy at the dentist office's funny looks at Gage yesterday. He didn't ask, though, so I didn't offer.

This isn't something I only do in April - if anyone has questions about my boys, I'm always happy to answer them. The more people know, they more they accept what is, right?

I've noticed, though, that other children are noticing more and more that the boys aren't like them - they don't talk, they vocal stim like crazy, they jump and spin and walk on their tippy toes, they don't eat what typical kids eat and they live in 'their own little world' most of the time - but they're still kids, they still like to play with toys and watch movies and run around. So while it doesn't exactly feel nice to hear "What's wrong with those kids?", it moves me to make sure that becomes acceptance, rather than judgment.

If I can't advocate for my boys, whether the questions are directed at me or not, then who will?

Reader Feature: Lyndsey J.

As part of ‪#‎Autism‬ Awareness/Acceptance Month I'm featuring readers who responded to my call for submissions earlier this month. Today's feature is Lyndsey J. - her mom, Amanda N. sent in answers to some questions, which I used to write up a little feature on Lyndsey. I hope you enjoy!

Lyndsey J., age 2, is a member of our fine autism community. Her mom, Amanda N., noticed early on that Lyndsey wasn't developing typically. Lyndsey was diagnosed before she turned 2, at Vanderbilt Medical Center.

“She wasn't making eye contact,” Amanda shared. “Not talking, not holding her cup, and [she] was VERY picky eating, with a lot of gagging problems. Also, she never responded to her name, at all.”

Early intervention, Amanda stated, is vital for children on the spectrum.

“I cannot stress enough the importance of early intervention,” Amanda commented. “I have seen my little girl progress to making eye contact, eating new foods, learning sign and being able to play with other children. All because of early intervention.”

Being on the spectrum has ups and downs, Amanda noted, but Lyndsey's giggle and love of being outside are just two of Lyndsey's many positive attributes. Lyndsey loves Mickey Mouse and Dora. She's also very loving and affectionate towards her mother, giving her hundreds of kisses a day, which Amanda has been told is “unusual for a child on the spectrum.”

“My heart breaks daily when I look at my beautiful little girl and see her struggling to do small things that others take for granted,” Amanda noted. “I know, though, that we are going to be okay! We are fighting and we won't give up! We are on this journey together and WON'T quit.”

However, Lyndsey doesn't yet understand the concepts of danger and boundaries, making family time outside stressful.

“It makes it very hard as a family to spend time outside...when you have to be on constant guard,” Amanda added.

The stresses and struggles of parenting a child (or children) on the spectrum can become overwhelming, Amanda hinted.

“...Remember that it's okay to make time for yourself,” she said. “It's very easy to 'lose yourself' in a sense, when you are raising a child with autism.

“Pray,” she continued. “Talk with your mate, talk with friends. Reach out for advice and let people help you. Also...cry! Get angry! It's okay. It's healthy, I think! It's all a journey. It's a daily struggle. It can be the most bittersweet adventure, ever! Don't give up...”

---

Thanks for sharing your story, Amanda N.

If you'd like your family to be featured, just send me a message at https://www.facebook.com/chockfullasd.

Color the World

April is fast approaching, and it's "Autism Awareness Month" - a lot of other bloggers are planning to #ColortheWorld for #Autism, though, because autism doesn't just affect boys, and because autistic people don't necessarily want a cure, they want to be accepted for who they are, and who they have the potential to become.

For the month of April, I will open my blog up to others who have something to share on the topic at hand: Autism. There will be posts from parents of neurotypical children, as well as posts from adults on the spectrum, and parents of children and adults on the spectrum...who knows, it's still open - which is the point of this post - a call for submissions!

Do you have something to say about autism? Want to share how autism has touched your life? Want to rant about how unfair it all is? Let me know! Always wanted to share your voice, but too worried about grammar and spelling? I'll take care of that, I did it for a living for a couple of years, I haven't forgotten how to edit in an unbiased manner.

Even if you want to share your story, but aren't comfortable weaving a tale, if you want to be interviewed, we can do that! I loved writing feature stories when I worked at the local newspaper! Leave me a comment here, or send me a message on my Facebook page, and help us #ColortheWorldforAutism this April.

April is also:

-National Multiple Birth Awareness Month (who knew!) - so I'm going to ask another mom of twins on the spectrum to post from her perspective! I might even be able to sway the Punk Rock Papa himself into guest posting, who knows, he might be too busy with his masses.

- National Occupational Therapy Month - look for tips on my Twitter, Facebook and Pinterest pages!

There's a whole slew of things to be aware of in every month, these are the 3 I'm going to focus on, because they're relevant to what I'm doing here. Have something to share about any of these? Let me know!

#1000Speak: Building from Bullying

You are not a perfect parent. Neither am I. So long as we're doing the best we can under our own circumstances, who cares what anyone else thinks? The blogging world is the place where parents can go to let themselves get away from some of the stresses of parenting, but bullies are constantly finding their way in the door. If they're not complaining about what we're writing, they're calling us out for what we're not writing.

Yes, we are writing about the stresses and joys of parenting, but that, in itself, is therapy for many of us who blog. It's our way of releasing our pent-up frustrations. It's a way to reflect on the lessons our children are teaching us every day.

There's also the fact that we're busy in the trenches, dealing with all of the bad stuff that you all so keenly want us to portray. Let's be honest, though, when we do talk about the real stuff, we lose likes and followers, people stop reading us because they don't like the truth of the matter. Because even though you want us to be more real, you also want us to be less messy, talk less about poop or vomit or 3 am viewings of Frozen that happen over and over again for months at a time. When we talk about the struggles and hardships, we're reminded to be grateful. Make up your minds, people.

I may be doggy-paddling my way through, but my head's above the water, and I think that's commendable – and guess what, it's commendable, kids or no kids. Surviving in this world is no easy feat; there are people who opt out every day – if you're not one of them, congratulations, you're doing okay – and that's enough. It would do the world good to remember that, to have some compassion.

It's enough for me, because I'm happy (mostly, I do battle depression, anxiety, etc) and more importantly, my kids are happy. They're not happy all the time, but they're toddlers, and in my opinion, toddlers are worse than teenagers (though I'm not looking forward to having teen twins).

My house is lived in, there are dishes on the counter, it's after 7 pm and I haven't cleaned up the boys' mess from dinner, and I don't remember the last time I was brave enough to clean the toilets. Sometimes the trash piles up and the living room is always a mess (toddler terrorists...why would I even bother?), but we have home cooked meals and snuggles and my boys' laughter can be heard more often than their screams and cries (though in the moment, it always feels endless).

When we first got the boys' diagnosis, I accepted it pretty readily because I'd been prepared for two years, but not everyone was able to just hear it and move on. Some people told me that if I just worked with them more, spent more time with them, that they would be just fine; it wasn't autism, it was bad parenting, they said. I have a hard time writing about that because it's in the past, it's behind us, but it still hurts. I don't really care what anyone thinks of my parenting skills – my boys are happy, healthy and their needs and wants are met to the best of our ability – that doesn't mean your words hurt any less.

So maybe bloggers are hesitant to put the real stuff out there, the hard stuff, because it's too painful to bear the hurtful comments, the judgment – because obviously everyone is an expert on your kid but you, when you're on the Internet. We get plenty of that in real life, from family and friends and strangers at the grocery. We receive that treatment from pediatricians, therapists, insurance companies and schools, why would we want to bring that to our happy place, our place to be at peace with the lives we must live to build a better future for the most important people in our world?

If our readers are going to call for more real and less flowery, then they need to be compassionate when we show that picture, rather than picking us apart, piece by piece. I realize the Internet is all about the drama, the entertainment factor, but we're real people behind these screens, we have feelings and need a confidence boost as much as the next person. Let's, instead of bullying, build each other up, help each other through the tough times and celebrate the joyful moments as often as we can.

Our work as parents, special needs or not, is hard. This is harder than any job I've ever had, harder than school, harder than anything else I've ever done, because the stakes are higher. I have the lives of two little boys in my hands, every day. They depend on me, completely, to take care of their needs, to help them, and to teach them.

I don't need your validation, but I appreciate your compassion.

Oh the Wonderful Treats They'll Eat

It's Dr. Seuss' birthday! The boys are celebrating all week in school, and today they dressed up in their Thing 1 and Thing 2 costumes and watched The Cat in the Hat. Me? I wrote a poem, because I love Dr. Seuss and always have.

My boys won't eat it if it's crunchy,

It doesn't matter if they're munchy.

They don't like it to be dry.

If you want to hear a cry

Give them something green,

That's sure to make them scream.

'Try some 'nilla wafers or some popcorn?'

Is always met with looks of scorn.

If you ask them to eat their broccoli,

Well, you're a braver mom than me -

For the gagging shall commence.

Nothing green, it's common sense.

Hide it away, they'll dig it back out

Their hate of green, it is devout.

Not sure if it's texture, scent or color

But they won't eat it for a dollar.

They won't eat it for a bunch of trucks

Or even squishy, squeaky bathtub ducks.

Give them cloth, they'll chew, chew, chew.

Give them plastic, they'll bite it through,

But pretzels, cookies, crackers - they won't do.

Oh my wonderful kids hate candy, too.

A fork? Can't be bothered, too much work.

A spoon? Can't you see that impish smirk?

Their etiquette is non-existent,

And their hunger cries persistent.

Feed me now, they cry and scream.

A quick snack? Hah, a mom can dream.

But with all of this, a greater feat -

Because oh, the wonderful treats they eat.

Homemade muffins with carrots inside?
They eat it up, mom beams with pride.
Anything in the shape of a waffle,
They'll eat it by the fist full.
They'll eat fresh fruit in pancakes
But not cut up on their plates.

Meatloaf, spaghetti and ravioli
All favorites, but no cannoli.
Give them mashed potatoes
Chili with beans and tomatoes,

But don't give them Yellow Lake

Or Red Dye 40, big mistake.

There's many treats my boys will eat
But they prefer savory to sweet,
And if you try to give them something new
You'll basically be met with a big F-you.
They'll eat plenty of things, you see

Just not as many as you and me.

-----------

This started out as a post about how many wonderful things my twins eat - but once I started thinking about it, they eat mostly similar things - I'm awesome at switching up those things to make it seem like we eat a variety, because you do what you gotta.

Take, for example, their love of meat. Everyone asks "How did you do it? My kids hated meat." My boys were strange, at least, according to the nutritionist at WIC (Women, Infants, Children for those of you not in the know) because most kids don't like the gristly nature of ground beef. That was our starting point - ground beef, ground turkey, ground pork, ground chicken - they love meatloaf, hamburger with macaroni and cheese, spaghetti with meat sauce. I don't need to worry about their protein intake, meat is consumed on the regular.

I do have to worry about their veggies - everything else is covered, and even veggies aren't a huge concern for me, because the boys do end up eating carrots, whether they're aware of that fact, or not. I shred carrots into the ground meats, including ground meat for spaghetti, meatloaf, tacos, hamburger mac n cheese...and anything else you might think of that includes ground meats. I also use garden veggie pasta which is about 1/2 a serving of veggies per serving of pasta.

They also started eating cut or shredded meats - chicken, pork chops, beef - so long as they weren't dry. I'm fairly certain my boys' food aversion is more to dry food, than to crunchy food, although they didn't eat french fries until the summer of 2014 ( 3 1/2 years old) and they started eating chicken nuggets (of the crunchy variety) in November 2014.

Up to this point, we really weren't even able to have the convenience of feeding them fast food - if we needed to, or if we had the money to splurge. Their "fast food" was canned ravioli - that's actually their go-to food, if all else fails. Other go-to foods include: Butter bread, cinnamon-sugar toast, pancakes/waffles and mandarin oranges (NOT clementines, they won't eat fresh oranges!)

I hear from other autism parents how their child refuses meat, refuses this or that. Some kids will only eat pizza, or french fries, or whatever - their food list is not nearly as abundant as our food list. I've never been the type of person to just stick to eating a certain thing - I love variety, and I love to cook. I love using fresh ingredients (mostly in the summer when our farmer's market is running and I can get locally grown and in season) and making things from scratch. I've always loved to bake. I like to experiment, and I'm horrible at following recipes because I do what I want.

Even with all of their aversions, I'd say my kids eat pretty well, and they're generally healthy. One of these days, I'd like to try to put them on a gluten-free diet, see if that helps some of their issues; but I'm not crazy enough to think I can just completely and drastically change their diets - so I'm trying things here and there, and making note of what works and what will need tweaking. I'm building up my knowledge base, gathering information and trying to ease them into it.

I did research on dyes in foods, and how those can affect aggression and attention, and so we decided to try it out - and it worked. I checked out some old posts and realized it's been almost exactly a year since we cut out dyes (I know this because I made their Mike & Sully [Monster's Inc] cakes and they were chock full of food coloring. And after 11 months of dye-free agression-lowering, attention-span gaining and progress, I messed up and gave them Kraft mac n cheese, with the Yellow Lake. Whoooo buddy did I regret it. It's been more than three months since that incident, and we're still trying to just get back to where we were.

I have to say, when I thought about my future - from the time I was a little girl up to the moment I found out I was pregnant - it never included having to figure out how to feed two little mischievous monsters, or having to research special diets in hopes of changing behavior. Even up to the time they were diagnosed, I tried to feed them healthy stuff, but never gave much thought to how what they ate might affect their mood, their behaviors.

It's amazing what you learn as an autism parent, what you're more conscious of when you have little mouths to feed, children to protect from all the various dangers in life - including their food. How cooking goes from this selfish thing you do for self-preservation and pleasure, to this selfless act you perform day after day. And it is a selfless act, to take the time to carefully prepare something that you think, and hope, your family will enjoy, and that will keep them nourished, only to have your toddler discard it blithely to the ground. Yeah, he might try to eat it off the floor within seconds of tossing it there, that's his prerogative, as a toddler. Life is his game to play, and it doesn't matter if it's meal time. 

#1000Speak It's never too late

The idea is to write about compassion; that's something I've learned more about in the last 4 years than I thought possible, living with autistic twins and their possibly autistic father. I don't like the textbook definition of compassion, though, it's the "sympathetic pity" part that gets me.

Compassion, in my mind, is being able to think about how what you're doing or saying is affecting others, to put yourself in their shoes and consider how they might feel. Compassion is putting aside your own selfishness for a moment and caring about the rest of humanity. The world could certainly use a little (or a lot) more compassion.

I don't often write about Pricklypants in a positive light, and that sincerely needs to change. In the last four years he has grown, and while it may be slow-going, as with our children - all progress should be celebrated.

Pricklypants has learned so much about #compassion from our boys, and probably myself. He's never been the type to think about how his words or actions might affect others. Recently, he's been advocating more for himself and for our family, speaking up when someone uses that word or speaks unkindly about those with intellectual disabilities. He's 23 years old and learning compassion, a little bit at a time, starting with the core of his heart - his children.


A little rough around the edges, okay, a lot rough around the edges, Pricklypants is not everyone's cup of tea. Sometimes he's not even my cup of tea. There are days when just hearing him breathe makes me want to punch walls (because I would never physically harm him - as my friend The Snarky Hippie reminded us on her personal page, domestic violence is never okay, and making it into a joke helps perpetuate the cultural norm that it is okay for women to be violent towards men).



I've always been a compassionate person; I used to be chock full of empathy, so much so that I would walk into a room and my mood would change with the atmosphere. And I have a soft heart and hate to see people suffer. Pricklypants is a bit more selfish, but he's learning and growing, and that's what really matters.

I used to be the type of person who would hold all the negative stuff in, not wanting it to affect others. That changed when I got pregnant - now, if I have something to say, I'll say it. Compassion be damned. I'm working on getting back to that sweeter, more forgiving version of myself, but I also know that I will need some of this armor for many years to come. #AutismParenting is tough.


Our families, in particular, lack compassion for Pricklypants - probably in large part because for the first part of our relationship, I lacked compassion for Pricklypants. When you get pregnant unexpectedly, and you never wanted kids in the first place, you might be a little bitter. And you might take that out on your partner.


Compassion isn't something that many people have had for Pricklypants because they see his behaviors as just that, behaviors, rather than symptoms of an underlying issue, most notably autism. He doesn't have an official diagnosis, but he fits the bill. For that matter, so do I.

Every day I watch him, and I watch the twins, and I see the similarities, and then I look in the mirror and it all pieces together. Our children are a compilation of the best and the worst of ourselves, and sometimes that makes us their biggest cheerleaders, and other times it brings us to expect more of them than we reasonably should. They need more compassion, because the movement begins at home and spreads like wildfire as we send our children out into the world to sprinkle their own compassion around.

I know I'm guilty of placing unreasonable expectations on those around me because I, myself, am completely capable of that, whatever that is. I suppose I've always lacked a compassion for those less intelligent than myself, at least that is what my elementary principal told my mother. That's not it, though, and if you know me at all, you know that I'm a kind, loving person. I just get impatient when I know something and feel someone else should also know. It's not intentional behavior, and I have been more careful to try to filter that, because compassion.

Having autistic twins has expanded my compassion, however. My impatience with them does flare up, I mean, seriously, they can be incredibly frustrating. But my patience these days outweighs my impatience, and I'm working every day to remind myself to see things from their point of view, to have compassion for the things they struggle with, and the same goes for their father.

Compassion in a world of perfectly imperfect souls is necessary; tolerance and kindness and patience are all necessary if the world hopes to keep surviving. The longer the bad seems to outweigh the good in the world, the longer human beings continue to disregard each others' humanity, the longer we all struggle, the harder the road is for all of us. A little compassion can spread a long way - it starts with you, and it's never too late.

Day in the life: Autism style

Sometimes I feel so overwhelmed by all that we have to get done in a day; and then I look back and feel like I've accomplished nothing at all. Every inch is a mile around here, every time we walk in or out the door we battle with the boys' distaste for transitions.

So small things, like a simple check-up for Gage's ear infection, feel like major things. The fact that tomorrow the boys have school, Pricklypants has a dentist appointment and Gage and I both have a check-up feels like we're about to climb Everest.

But it's not just that they have school, it's that I have to feed them at least once before I take them to school, which is sometimes just a lesson in futility because they throw it all on the floor, anyway.

After that, I have to get them dressed and wrestled out the door (some days are easier than others, Mondays are always horrible). Getting them into the car is almost always a breeze, unless they're too busy admiring nature, or the trash can, or licking salt off the side of the car.

And then there's the banshee screaming that happens as soon as our front tires hit the road. It gets me every time, too. For approximately 1/4 of a mile, until we get to the church. And the second set of screams as we turn onto the next highway less than half a mile down the road, and again I'm jumping out of my skin, my heart skipping a beat - terrified that they're somehow seeing some impending danger that I've missed. Gamble starts it - sometimes Gage joins in, but it's always Gamble who starts it. It used to be Gage.

The remainder of the 10-minute ride to school is peaceful, we blare the music and "sing" along. Some days we get to school and they're giggling and excited to be there, and other days they throw themselves on the floor, covering their ears and refusing to move. Those days exhaust me.

Those days are usually their best days in class, though. The days when they wake up at 4 am and don't go back to sleep, or the ones where they fight me extra hard about getting ready or eating their food. Those days they smile, they cuddle with their teachers and use gentle touches.

And then I rush around for 2.5 hours trying to get done all the things I never get done with two 4-year-olds tagging along, like going to the post office, grabbing a coffee, trying to find suitable carpet for their room, etc. Or I do the grocery shopping, because it's nice to go without anyone else. Some days I just go home and veg out and catch up on TV, though, because all I really want is to go back to sleep. Sleeping while the twins are at school is out, though - I've tried it. Between Pricklypants, my anxiety that I'm going to sleep through my alarm and miss pick-up, and the fact that any time I try to take a nap people choose to call incessantly, there is no napping during school hours.

Then I go get the boys from school, usually taking 20-30 minutes to get them motivated and helping with their things - holding out a coat and asking if they're reading for 5 minutes while they snuggle up with their teachers. Don't get me wrong, I'm glad they like their teachers, and it's a good time to chat and catch up (because heaven knows I'm always misplacing the communication notebook, and who has time to sit down and write in a notebook, anyway? Why aren't we emailing?). That's something I'm going to miss when we start busing the boys (hopefully next week).

I get them out and into the car - this is one of very few places where we use the handicap placard. For the most part the boys are very manageable in public - they don't tend to wander too far from me before stopping to look for my hand, but Gamble's been known to decide to run off in the opposite direction as his brother and I. So, rather than risk the chaos of the school parking lot in the morning, it's much easier to park without having to cross the paths of any other cars while attempting to get the boys to focus on walking and not just touching the cars and licking their hands to taste the salt, (although they do that in the summer, too, as well as to the inside walls...so maybe not so much tasting salt? Oh the mysteries of autism.)

Then we go home and eat lunch, which I prepare and dole out in small amounts for less waste, while trying to do hand-over-hand with both of them simultaneously. And then there's clean-up, with them resisting me every step of the way because they're just not done eating, darnit. They get ushered into the living room, cups delivered. This is also when they get their trampolines, because otherwise I don't get a moment to breathe, or go to the bathroom, or sit down (not on the floor), at least this way I get almost exactly 10 minutes.

Following this is the epic struggle for nap time, which usually lasts about 2 hours, during which we play, read, wrestle, tickle and cuddle to wear them out. Some days I can leave the room before they're completely asleep, but most days I end up cuddling them to sleep one at a time, and by the time I get one to sleep and try to go take a nap myself, the other is waking up. Did I mention they're often up before the sun?

After nap time I usually clean up the kitchen, do laundry and let the boys jump while they watch DVDs. Then I make dinner. Sometimes they eat it, other times they play in it and create more messes for me to clean up. And then the clean-up resistance, followed by cups and more jump time - they could make a full-time job of it, really.

Not long after dinner we do a sensory or crafty activity, a snack follows. Some nights bath time, but not every night because they have dry skin. More jump time after baths. Then we start winding down, the trampolines get put up for the night and we watch a movie (ok, I may be hiding in a blanket fort playing on my phone while they watch a movie for the millionth time).

And then it's time for melatonin. I've learned that anything before 9:30 is absolutely a bad idea. They will wake up before 4 am, they will be tyrants and it will not be fun. I'm thinking 10 pm is the prime time because they tend to sleep later, but there are no guarantees, autism is a fickle mistress, after all, in the words of the Great Autism Daddy.

Once they finally fall asleep - sometimes as early as 9:30, sometimes in the wee hours of the morning and anywhere in between, all I have the energy to do is flop into bed. Funny how I always manage other things along the way, though, like picking up laundry, or throwing away trash, rinsing dishes and wiping up messes. Those things do go undone, sometimes, because I just don't have the energy to do it - yet again - in 6 hours.

Then Pricklypants wants human interaction, someone to play an Xbox One game with him, or to watch TV with; we've been together 5 years, we're both in our 20s, but we're already an old married couple who can't think of anything more exciting than catching the latest episode of whatever show is on that day - everything from The Walking Dead to Game of Thrones. 

And here is is, midnight, and I'm just getting a little time for me before I go to bed. Let's hope the boys don't decide 4 am is a good time to wake up two days in a row!

So while some days, I feel overwhelmed at the thought of getting out of bed (thank you depression and sleep deprivation), other days I can't wait to see what these crazy boys have in store for me. They're my motivation, because I just kind of have to - I have to keep going, I have to meet their needs because they can't meet them on their own yet. Plus, every day I get to see their wonder in the littlest of things, and their joy is infectious.