To the Uncommonly Kind Strangers Who Helped Me Become an Autism Advocate

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I was diagnosed with autism as a college senior. Until that point, I knew the world and I were often incompatible, but I had little insight about myself. I had a lot of frustration and no understanding as to why so many things ended in a fallout.

When I met Leigh during band camp, she recognized a girl who needed a friend. She also immediately saw that I didn’t seem to fit in. I was extremely sensitive to sounds and other things going on around me, and I just didn’t quite mesh in groups. A few weeks into our friendship, she mentioned autism, and as an education major (with a stereotypical autistic memory!), I was familiar with the diagnostic criteria. Yet, I wasn’t familiar enough with myself to see those traits in me. A few months later, I was evaluated and diagnosed.

There are seemingly endless reasons why my family and I wish I’d been diagnosed much earlier. The one positive thing about my late diagnosis was that Leigh was the one to pick up on it and start me off on the right foot — or, well, ideology. Right away, as a psychology major who had no background in autism, Leigh was absolutely sure there was nothing wrong with me, that I had a right to live and interact and enjoy things in my own way. She believed the solution to my mismatch with society was not to force my square-peg self into round holes. Instead, she helped me make a square hole drill (she did most of the work), and we set out to start making a place for me.

Now that I look back, it blows my mind that she got to that place completely on her own, and it wasn’t so much “getting there” as it was intuition for her. The story thus far is in itself a story about a stranger who did something kind. You know, um, changing the course of my entire life, bringing me directly to my passion and purpose in this world and sticking by a super-quirky girl who, at that time, did a lot of melting and shutting down and then spending the night on her love seat in the dorm room. I was lonely in my single room. It had never been a choice; I didn’t have a friend to room with at the time.

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But that’s not the story I set out to tell (though it’s a story worth shouting from the rooftops, don’t you think?).  Leigh and I set out with the square-hole drill, and it wasn’t long before we realized every person deserves to fit in to the world around us. No more yours than mine nor his than hers. We did an autism awareness campaign on our small campus. We hand-made ribbons, hot glued them to pins and attached them to sheets of paper with a message about autism. We made about a thousand, which was nearly half our student body, and we stuck them into random mailboxes.

In June of 2009, six months post-diagnosis, I started a blog at Autistic Speaks, which is still active. I was gaining a foothold in advocacy efforts until my health took a severe downturn in January of 2012. I had no idea what was ahead of me. At this point, I have a diagnosis of mitochondrial disease; I have a feeding tube, central line in my chest that goes to my heart, an ostomy since my colon was removed and an insulin pump. I spent 15 months in a nursing home, and though I’m on my own again, I never know what a day will bring. I might sleep for 24 hours, or I might wake up with a migraine that hangs around for six weeks, or I might suddenly be septic and have to call 911. All real-life examples.

As things got harder with my health, I completely pulled back from advocacy. That was the wrong thing to do.  It made my world too small. It made it all about me, and my focus became my pain. I still do focus on the medical stuff, but it’s been a lifelong special interest, for Pete’s sake, and understanding what my body is doing (as best as medical science can possibly understand my body) calms my fears. That’s one of those square holes — it works for me, and that’s all that matters.

A long-time reader of my blog, Chloe Rothschild, reached out to me in the summer of 2012.  She had an awful experience at the hands of people she should have been able to trust, people who said they understood autism. She emailed me a few weeks after that, which was incredibly brave. She was scared, but even then, she knew the way to get un-scared was to take that experience and make something good of it. She wanted to advocate so other people never have to be so misunderstood. Chloe worked hard, as she still does today, and by the summer of 2013, she had the chance to speak at a national conference which happened to be in my city. Still in mopey mode, I dragged myself down there, only because I absolutely had to meet one of my best friends for the first time. Maybe it was all a sneaky ploy, but in the one day I spent there, I got hooked on the idea of speaking like that. But mostly, I saw the community of advocates and the friendship within their group as well as the power they had to change things on a large scale.

I have my feet firmly planted in the advocacy world again, writing, speaking and even working at an autism nonprofit in the community which has become my second family. I’m so proud of the work I do there, designing the website and emails, but most of all I love to talk with the families, helping the parents see how incredible their kids are and making sure they kids don’t forget it. I absolutely love conferences, big ones like the one where Chloe and I met, but my declining health means that airplanes are out of the question, as are long car rides. The one event that is reasonable for me to attend, OCALICON, takes place each November in Columbus, Ohio. It’s a chance to speak at the highest level, a chance to make professional connections and a chance to reunite with my community of autistic advocates.

It turns out that living in a nursing home and receiving all of $28 a month makes it hard to afford even a four-day trip just three hours away. In the spring, I added up the costs and realized it would never happen. I realized I would need help if it were going to happen. I went back and forth dozens of times on taking the advice of friends and setting up a fundraiser. Conferences are not exactly necessary to sustain life, and I’m always mindful of people in much more critical situations. I ultimately set it up, thinking that family and close friends may donate a few dollars here and there. Every bit would help.

I got a few donations of that sort fairly quickly and felt such gratitude, excitedly thanking the donors. As I wrote to them, I realized that even though I was in a nursing home, I did a lot of work every single day. Not a day went by that I wasn’t writing, studying and researching (I did the first year of my Master’s from the nursing home, which I’ve now completed). I had a hospital bed and a tray table and a laptop, my key to the world. I could have watched movies or played video games, but I worked incessantly, after surgeries and ER trips, and I worked on my thesis from the critical care unit. It might be a little backwards in terms of economics, but I did all of that without compensation, so I reasoned to myself that this fundraiser was the return on all the good I’d been doing without pay for the last year.

As the first night of my fundraiser closed, I was thrilled to have some coins rattling in the pot. I had six months until the conference, and any little bit helped. I woke up the next morning to an email that I’d had a donation during the night. I went over to the site…

The fundraiser was complete. A complete stranger had plopped several hundred dollars into my lap.

After verifying that it was real and trying to figure out what on earth had just happened — well, it turned out that autistic community is what happened. Somehow, and I don’t know how, a gentleman who lived many states away came across my fundraiser. I wrote to him, and it turned out he is on the spectrum. He said he’d been in my place some years ago and was grateful when someone helped him, so he wanted to do the same. “Go and do good things,” he said. It was almost like it was the only thing that made sense to him, that to walk away from a need he could fill without doing so was inherently senseless, which, oddly, made me stop and think that his uncommon response makes a lot more sense to me than the the usual human reaction of “someone else will take care of that need.” We’re still connected, and I was thrilled to be able to tell him about the event afterward. I got to speak on a panel, and I also had the privilege of speaking as part of a panel of some of the mentors and friends I respect most, including Chloe, on the main stage, under the lights. He was glad to hear and shared my post with his wife and kids, but there was no self-congratulatory fanfare at all, it was like he’d handed me a dollar for a water bottle. There was no sense of filled obligation. He was glad something he had to do had at least done something good. It’s simple, not in a way that makes it unimportant, but in a way that suggests it’s something that should happen far more than it does.

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Of course I hope someday I can pay it forward, but money isn’t likely to be a thing I have in much quantity. But that one good deed, granted, one huge, incredibly selfless and kind good deed, follows me every day. I look for opportunities to do good, whether with my writing, my time or situations in which the $5 in my pocket does more good for someone else than it would for me. When a kid picks out a cookie and Dad realizes he only has a credit card, which the bakery doesn’t take, I’m confident in saying that my dollars are better spent there than on a donut for me. It’s not that I was a curmudgeon before, but being the recipient of an uncommonly kind action gives me the confidence to be kind in ways that others might find a little oddly generous.

But I’m a square peg. I’ll always be a square peg. I’m immensely proud to be part of a community of square pegs who do things like Leigh did when she reached out to a lonely me and helped me find my crowd, like Chloe did when she took a chance and became a best friend, like the mentors who spend their lives making things better for the next generation, and like the stranger who made it possible for me to keep advocating (and to take the one chance each year I have to be together with my autistic friends). I’ve found my people, and when I’m with them, I can leave my special square-hole drill at home.

I still take it everywhere I go, though, just in case I find a chance to be uncommonly kind. If I’m going to be weird, and I don’t have much control over that, this is precisely the kind of weird I want to be.

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I'm Not a Perfect Parent. He's Not a Perfect Kid.

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I’m not a perfect parent.

Sometimes I’m tired. Sometimes I’m hurt. Sometimes I’m so mentally exhausted I can’t think straight. Sometimes I’m stressed beyond belief. Sometimes I don’t do things right for my son, Kreed, or I yell too much or don’t take the time to understand.

I’m not a perfect parent.

The trick is knowing that no one is. We try, and we do our best for Kreed, but sometimes our best is not super awesome. Sometimes our best is sheer exhaustion.

Kreed sometimes has days where he rages all day. Or pees in every part of the house. Or spills food everywhere. Or yells at me all day. Or hits me. He’s not a perfect kid, either. But we love him unconditionally — to the moon and back. Turns out Kreed also loves us unconditionally and forgives us when we have just as shitty days. These dimples sure help.

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We’d like to think we can be there 100 percent for our kids every second of every day. Sometimes we’re just tired parents. Who wouldn’t be after waking up every two hours at night to put their child back to bed? Who wouldn’t be after cleaning up another mess left for us while we shut our eyes for just. a. second.

That’s they way it goes. Like I said, our kids aren’t perfect either. Some days the world is too much, and it’s so much easier to hit and yell and not use a toilet. I get it, I do. Some days Kreed just wants Five Guys for every meal and doesn’t understand that’s not OK. He’s hungry, and he wants their fries, damn it. So we fight and yell and have it out. Then he apologies, I apologize and life goes on.

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Sometimes life feels like a repeat. Sometimes nothing changes, and it’s a struggle to get through. Other days are amazing. Some days are both. I’m not a perfect parent, and he’s not a perfect kid. So that’s how that goes.

But as long as we keep progress in mind — not perfection — I think we’ll be all right. Last year we were at the end of eight months of pure hell. He raged and hurt himself and me badly day after day. He was restrained constantly to keep him from destroying his body or the house or me.  I think I went to a part of myself and my brain that kept the full weight of those eight months far from my consciousness. Now I can barely recall it, and I guess don’t want to. It’s a year later, and there’s much to celebrate.

This is not always an easy life. Some days will be better than others. Sometimes the bad days stack up, and you hardly remember what a good day looks like. But it will come. It will be a smile, a nod, a moment of wonderful — something — and the world will be OK for that time — five seconds, five minutes, five hours. That’s what we hold on to.

And remember it’s OK. We’re not perfect. We try our hardest, and we love, love, love. And often that’s what saves us all.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

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Why I Think of Autism as a Visit to the Amazon

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Dear Autism (oh, and epilepsy, too):

Here’s a letter I never envisioned myself writing.

I don’t think anyone who has a child with autism truly admitted to themselves during pregnancy (and what a glorious time that was… *eyeroll*) that we might one day be navigating our way through the sweaty, remote, achingly confusing jungle that is autism, when we’d actually planned on a trip to Maui.

Of course, the Amazon also has breathtaking sights, exotic creatures and the piercing sounds of nature one cannot always pinpoint, but it’s nonetheless creepily dense, a bit frightening (snakes that can swallow a human whole?) and you’re utterly without a roadmap.

Autism, the reality is, you’re a disorder that both can and cannot be disentangled from the person who carries your diagnosis. My 5-year-old little boy, Quinn, can be distinguished from you, autism. He exists before you and far beyond; he’s not the sum total of your medley of symptoms.

At the same time, you have such a profound role in shaping his preferences and aversions, his ability to speak and his capacity to do or not do so many things.

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However, so do his genetic profile and his environments.Therefore, while you might want to claim responsibility for all his features and characteristics, sometimes he avoids foods because my husband hates them too or has curious habits that are similar to mine (A consultant once observed a behavior, and I interjected, “No, no, that weirdness he gets from me.”).

Quinn is also a 5-year-old boy who attends an inclusive daycare, has epilepsy, a loving family, is an only child, lives in a temperate climate, comes from a middle-class family, has relatively educated parents and the list goes on and on.

So, autism, while you take up a lot of space in our lives with your constant requirements for therapies, modifications and understanding, I refuse to allow you to claim our son as your derivative, as your offspring, as your mirror.

He’s so much more, and the more I (and others) can remember and reflect on that, the less of a chokehold you’ll have on me or on him.

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In closing, autism, I respect your role in our lives; I treat you with deference and understanding, and I certainly don’t hate you. But let’s also face it, while we have wide-eyed and courageously travelled this jungle, we have also not forgotten you’ve supplied us with a tent in the Amazon rather than a plush suite at the Maui Hilton.

Admittedly, I’m now accustomed to the tent, to mitigating the sweat and heat, the noises and the chaos, but I’m also more appreciative of its unique beauty, its moments of stillness and oxygen-rich life-giving perspective, and the fiercely devoted tribes who live here too.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How I’ve Learned to Move Past the Fear That Comes With Raising a Child With Autism

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One thing I’ve noticed most about the special needs community is how overwhelmed we parents are by fear and anxiety. We worry about every aspect of every day, not because we want to, but because there’s so much going on in our lives that qualifies worrying.

We, of course, talk about the bigger things. We worry about will happen to our special needs children when we are gone. We worry about services and our children’s schooling. We’re terrified of the next regression that could be around the corner.

But I’ve also found myself engulfed by fear during my everyday life. I don’t speed, and I always use my turn signal because God forbid we get pulled over with my autistic son in the car. He would scream and be overcome with anxiety. The officer would most likely be clueless, and the situation would escalate to myself and my child being taken out of the vehicle and questioned or worse.

I fear every time we go into a store or to a new place that something will upset him. A child crying or the store testing its alarms that will push him over the edge and cause a panic attack or meltdown from which he cannot recover. Yes, that happened; he was traumatized for months and always associated Walmart with that terrible sound.

Every time we lose a service or get waitlisted for a therapy, I fear regression. I fear skills we’ve worked so hard to master could be lost. I fear without therapy he will be delayed in some areas much longer than he would if we were getting the right services. I fear every move for this reason.

I fear ever being in a car accident with him in the car. His brother once ran their power wheels into a tree while he was in it. He would not go anywhere near the power wheels for months after that. Once we ignorantly went through a carwash with him in the car. It took a week and a lot of therapy, a lot of tears and screaming to get him back into the car. Can you imagine if we were in a car accident? I fear he would never get back in a car without severe anxiety.

Every time I get into the car without my children, I worry I could be in an accident and die, and my children would all have it so hard, and my son with autism would fall apart and regress far into his own world. Every time my husband gets deployed or has to go overseas for work, I fear something could happen and my children would be without a father and a provider, and we would lose the health benefits that mean so much to my son.

Every time I hear a siren and my son is not with me, I panic and my heart jumps into my throat. Is it him? Did he get out of the school and get hit by a car? Should I even send him to school if I can’t be with him constantly to make sure he’s safe?

I constantly worry about the medicine, the foods, the chemicals to which I expose my children, especially him. I cried before we gave our youngest daughter her one-year vaccines, because even though our son’s autism had nothing to do with vaccines, there’s a culture of fear surrounding our special needs children.

I don’t know about you, but there are days when I want to stay in a bubble with my family. Days when I just feel paralyzed by the fear and anxiety. But if I let that fear overtake me, I cannot live and, even worse, my children cannot live and experience the world around them. Unless we move forward from the fear we will miss out on all of the amazing moments and experiences we have every day with our children.

Even though I worried about being able to adjust to having a third child with so much on our plates, we moved forward, and I am so thankful we did because she’s an absolute joy. All of our children have brought us so much happiness and I refuse to get so bogged down by fear that I don’t get to experience that happiness.

This post originally appeared on From the Bowels of Motherhood.

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To the Stranger at the Carnival Who Understood My Son

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In the summer of 2014, some friends invited us to visit a local carnival held on the grounds of one of our local schools. We were slightly hesitant as my son, Alex, who has autism, was a bit of a loose cannon at times. Would there be anything for him to do? Would there be long lines? Will he only get a few chances at a game and once his turns were up, would he be upset?

This particular friend is a fellow autism mom and one of the most helpful people you could ever meet. We knew we’d have help and an extra set of understanding eyes. So off we went.

About an hour into it, things were going pretty well. Our youngest son was having fun. Our friend’s son, although upset about something that only another autism parent would understand, was having fun too.

Alex had been in the bouncy house, went through the bouncy tunnel and went down the bouncy slide. Although there were long lines, it seemed like the idea of getting onto the slide was enough to keep him fairly calm and patient.

As we headed over to the prize tent — the kids had won tickets — I glanced over at my husband, Jeff, and said, “Where’s Alex?” He’d been right next to him a half a second before this. We were all scrambling, looking around us. He wasn’t there.

Panicked, I started running and left our youngest son with our friend’s mom. Jeff took off in another direction, and our friend headed back towards the parking lot thinking maybe Alex would go back to the car if he didn’t see us.

While I was running and screaming his name I was thinking, Why am I screaming? He doesn’t answer to his name. At times, he doesn’t even turn around if we call him at home, so why will that be different out at a crowded carnival? If someone else finds him, how will they communicate with him? He’s completely nonverbal.

This was a panic like I’d never ever experienced.

All of a sudden this man appeared in front of me. He was an older gentleman, looked like a grandpa. “What’s his name?” he asked. “What’s he wearing?” I told him his name is Alex and he was wearing a blue tank top. I added that he’s autistic and doesn’t talk.

“OK, my grandson has autism too so I understand,” he said. “We’re going to find him!”

I didn’t have time to tell him more, and he didn’t ask anything else. And just like that, this man disappeared.

It seemed like hours were passing, although it was only minutes. Finally, Jeff spotted Alex. He was in-between the bouncy house and bouncy slide, watching the kids jump. Jeff said he looked him right in the eye when he saw him, almost like he knew he was lost and was happy to see a familiar face.

A few minutes later, the man found us. Seeing that we now had Alex, he expressed his relief that we’d found him, and we thanked him for helping us. Again, he mentioned his grandson and that he understood how scared we must have been. Then he and his wife walked away.

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Fast forward to January 2015. We were out hiking the snowy trails and came across a man and his dog. Of course, the boys stopped to pet his dog. He looked at us and said we looked familiar.

“I’ve met you somewhere before,” he said.

“Yeah? Well, we hike a lot!” Jeff said. “I’m sure we’ve seen you on the trails.”

The man was still looking at us like he knew us but just couldn’t place how he knew us.

“No, it was this summer! Yeah that’s it!” he said. “He [pointing at Alex] got lost at a fair, didn’t he? I was helping you look for him! Hi Alex!” As he leaned down and patted Alex on the back, he added, “My grandson is autistic, too, that was so scary!”

I couldn’t believe this man remembered us! But he was right! He was the one who’d helped us look for Alex when he got separated from us at the fair. Although he’d told us he was there with his grandson and wife, we had no way of knowing where he was from. Was he just here visiting? Did they come to the carnival from a neighboring town? For all we knew, he could have been from anywhere.

Not that we wanted to re-live those moments, but it was a joy to see this man and to thank him again for helping us on that frightening day.

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This post originally appeared on Chicken Soup with a Side of Bacon.

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10 Ways Being an Autism Parent Has Been Different Than Being a 'Typical' Parent (So Far...)

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Lila is our one and only and, from what I can tell so far, here are just a few of the differences between us and parents of children who don’t have autism:

1. The Routine

For the love of sweet baby Jesus, don’t change the routine. It’s a lot like the movie “Groundhog Day” at our house, except the routine doesn’t always work…yet we cling to it like a lifeboat in the middle of a storm. Those with autism have a huge problem deciphering what will come next – having a set routine helps them create stability, and allows them to feel safe.

2. Food/Eating

I can count the number of foods our daughter will eat on one hand. When she DOES try a new food, even if it’s super unhealthy (like a donut, or cookie) – we’re thrilled! She is not just a “picky eater”, she is a “problem feeder,” meaning she has an extremely restricted number of foods she will actually eat on a regular basis, she cries and falls apart when presented with a new food, and will refuse entire categories of food based on texture.

3. Sleep (or Lack Thereof)

We didn’t sleep through the night for over two years. She was up at least 2-3 hours overnight, every night. The lack of sleep was crippling, and I have no idea how we continued to function. Some children with ASD use melatonin since they’re bodies don’t produce it but that didn’t work for our daughter. We did eventually find something that worked best for her.

4. Public Outings

Everyday outings can be overwhelming for those with autism– the lights, sounds, the typical hustle-and-bustle you or I would consider “normal” can just be way too much for them to handle, so they either shut-down or meltdown. Sensory processing issues can be crippling at times, and all of it definitely plays a big part in where we can (and can’t) take Lila successfully. She has to work incredibly hard just to be “OK” in our world, every single day.

Play dates are the most difficult thing to watch (for me, anyway). Our daughter and our life are completely normal to us until I’m faced with “typical” children her age. Seeing children genuinely try to interact with Lila; call her name, go up to her and speak, follow her around, and attempt to play with whatever she’s playing with– and watching her get upset and run away– it’s brutal.

5. Medical Decisions

ALL parents are nervous when their child gets medical tests, procedures, surgeries, etc ( and we’ve been through plenty of them). However, once you have seen your child have a regression due to something no one was able to warn you about (ie nitrous), it takes that paranoia to a whole new level. I second-guess everything, and do more research than you can possibly imagine on a myriad of topics you’ll never have any need to know about (ie MTHFR gene mutations).

She has fought so hard to get where she is, the thought of us making a decision that could cause us to “lose” her again is beyond terrifying.

img_6390 6. Friends/Family

We used to have more friends (and family for that matter). The truly good people stick around, but there are those who don’t. It’s a lot to deal with– totally understandable. If you’re not willing to put in the work to actually interact with Lila on her terms, or if you look at her and treat her as “less than,” then she doesn’t need you in her life and neither do we.

7. Holidays

All of us have these preconceived ideas about the holidays and what they “should” look like. There are a lot of things about the holidays those with ASD find difficult to deal with (change of routine, crowds, the noise, new and different smells, traveling, etc). We have had to ditch a lot of the old ways of doing things and find ways to celebrate the holidays that are new and different. We create our own “normal” and just do what works best for our family.

8. Communication

We don’t have a child who runs to us yelling “Mommy! Daddy!” and hugging us. That’s just not how it works with Lila. We’re so incredibly grateful for where we are now– a year and a half ago (to her) we didn’t exist. She wouldn’t acknowledge us hardly at all. Nowadays she follows us around wanting to interact with us. It’s incredible! She is still currently considered “non-verbal,” but trust me, she loves us just as much as any other child loves their parents (I can FEEL it!). She just shows it in a different way, such as resting her head on my shoulder, touching her forehead to mine, etc.

She cannot talk, point, etc. so she uses PECS (picture) cards to let us know what she wants. She may also push us and squeal to try and get us to do something she cannot yet communicate. Being a toddler with an average or above-average IQ who cannot effectively get across her wants and needs is beyond frustrating for her. We continue to try and help her develop new ways to use her own “voice.”

Because I don’t want to be her voice. I want her to be able to speak for herself.

9. Therapy and the “Language”

I rattle off acronyms when I’m talking to people about what’s going on: IEP, PDD-NOS, ASD, NT, PECS, MTHFR, IFSP, DD, EI, GF/CF, ABA, the list goes on and on. It’s just part of our everyday language.

Therapy is a loaded topic nowadays within the autism community. You’re either primarily an ABA family, or a Floor-Time/Play Therapy family. We’re the latter. I have nothing against ABA, I just think different methods work better for different children. Either way you go, it involves about 40 hours a week. With ABA, professional therapists are doing the work with the child, and with floor-time it’s the parents working round the clock on new and existing techniques.

10. General Outlook and How We Live Our Life

There is an increased level of awareness for disabilities of all kinds, and a vulnerability that comes along with that. “Those things” don’t happen to “other people,” they can happen to us– any of us– at any given time.

Lila stopped hitting the typical milestones a long time ago. We live our life at her pace, and nothing (I mean nothing) is taken for granted. We are truly grateful for each and every accomplishment, no matter how small it may seem. We no longer sweat the small stuff– there’s no time for that! We live day-to-day, and have honestly become all-around better people because of our daughter. If I could only choose one child in all the world, I would choose her, every single time.

She has been (and no doubt will continue to be) one of my greatest teachers.

This post originally appeared on Dancing With Autism. Check out their Facebook page for more info.

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