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.

young boy wearing suit and tie

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.

young boy smiling outside

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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5 Lessons I Remember When Living With Autism Gets Hard

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unknown Three and a half years ago my life changed — at the time the change seemed bad, frustrating and confusing. I sat crying in a meltdown thinking to myself, “Why me?” I wanted to know why I was having such a rough time.

My friends, family, therapists and teachers kept telling me it would get easier and that there was hope. I’m going to be totally honest by saying, there were times I doubted this. There were times I was starting to lose hope.

But I’m resilient, courageous and brave. I’d been hurt, and misunderstood. But this all lead me to wanting to advocate and help teach others about autism from my perspective. I wanted to help solve some of people’s misconceptions and ignorance related to autism. So I used my negative experience to do so.

Here are some important things to remember:

Sometimes things happen for a reason, even if you don’t know the reason at the time.

Sometimes it gets harder before it gets easier.

Changes don’t suddenly happen overnight; it takes time and patience.

Don’t try and force yourself to go through it alone. Everyone needs a shoulder to cry on and people who love them.

It’ll be OK, even at times when things are far from OK.

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When a Stranger in the Coffee Shop Noticed My Son’s Disability

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This morning, as my 5-year-old son trotted off happily with his two loving grandparents, I backed away quietly in the coffee shop, feeling anxious.

My son is nonverbal and has autism and epilepsy. While I love and trust my parents enormously, leaving him with people other than my husband generates a significant amount of anxiety. I wondered, “Will he be OK? Will he be loud and stimmy and make my parents anxious or uncomfortable? Will they remember to take him to the toilet? Will he reach out in frustration and hit someone to garner attention to his needs?”

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I must have looked anxious as I crumpled down in the overstuffed leather chair. An elderly gentleman across the way smiled at me and tried to initiate a conversation. He kindly asked me, “Where does your son attend school or daycare?” I answered but felt a bit unnerved that this stranger was asking me questions. He smiled and relayed that the school was a good one and hopefully I felt my son was well supported there.

I rather tentatively told the man my son has a disability and we’d purposely chosen the school based on its reputation. He flatly said, “I know he does.”

Again, I felt mildly irritated and put off.

I mean, who did this guy think he was? Announcing he recognized my son has a disability perturbed me. I didn’t think my son was behaving in a way that would reveal his invisible disability, and somehow this man had found him out.

The man continued and explained that he was a former vice principal at a now defunct public school that once catered to children with Down syndrome. He went on to explain that he’d also been married to a woman who had a child with a disability and had experienced and supported her struggles to access supportive care, housing and other services for his stepchild.

Immediately, my defensiveness and suspicion melted into empathy and relief.

Empathy for someone who gets it, even though they don’t have a biological child with a disability, and relief that the latter suggested I was among a member of my “tribe.” My tribe is a group of people who have or will spend part of their lives in the interminable but absolutely worthy struggle of exhaustion and advocacy.

By the end of this conversation, I began to realize my initial reaction of other-ing this man’s kind outreach to me only subsided when I learned he was part of my tribe. Maybe, I thought, just maybe I should appreciate that this man didn’t join this tribe by genetic affiliation but by choice. He chose to pursue a career in support of children with special needs, and he chose to marry a woman who also was a strong advocate for her child with complex needs.

Maybe this tribe is bigger than I realize? Maybe it’s me who’s gatekeeping too strongly around who I choose to reach out to, to allow in and to share my struggles with? Because speaking to this lovely gentleman offered me new hope for a larger and enlarging circle of support for all our children with disabilities.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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