My Son With Autism Likes to Wander. Here’s How We Manage That.

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Many children wander and many parents have had that moment of panic in a shopping center or playground when they lose sight of them. Having a child with autism makes these times a little more frequent and a lot scarier for our family. As soon as our son, Jesse, could walk, he was wandering.

Before autism was on our radar, we just figured our little man was fearless. For the first year and half of Jesse’s life, we lived in a converted shed on the 50-acre farm of my husband Kerry’s parents. It didn’t matter what time of night or day it was — if Jesse decided he was visiting his grandparents up at the house or going for a walk with the dogs to the dam or over the ridge, he was off. None of these instances on the farm ever resulted in Jesse being hurt or in any real danger, and the dogs usually alerted us to the fact he was wandering before he’d gotten far.

Jess has always stayed with his Ma and Pa or his Nanna’s for visits, and I’d continually ring and check on him, especially if it was a sleepover. I used to ask Ma or Nanna to make sure doors were locked and furniture was blocking all exits. We didn’t have a diagnosis at that stage, and I’m sure they thought I was being a tad overprotective. When the wandering continued, I knew it was more than a little boy’s fearless curiosity to explore.

The scariest wandering incident we had was when we’d just moved into our new place and was Jesse 2 years old. I was at work and Jesse was at home with Dad, who was on the mower at the time. Our 2-acre property is surrounded by bush. Kerry said one minute he was there playing in the yard and the next he was gone and so was the dog, Randy. Kerry called his parents for help first, who must have dropped everything, jumped in their car and made it over in record speed. I still remember the fear and panic in his voice when he called me at work and told me he couldn’t find him anywhere. I knew it was bad because Kerry was almost crying, just repeating over and over, “He was just there, where could he have gone?” My stomach dropped to the floor; I’ve never been more scared in my life.

Luckily in the 12 minutes it took me to get home, Jesse had been found. It turns out Jesse and the dog had walked 700 meters behind our block in bushland, through electric fences to a neighbor’s property. The neighbor picked Jesse up and walked him back out of his place and onto the main road where Kerry’s parents spotted them. We were so lucky for so many different reasons in this situation. My heart races every time I think of that day; it’s racing now while I’m writing this.

Unfortunately, wandering is something that might have to be on your radar when you have a child with autism, even if you’re somewhere you regularly visit, like school or your local shops. Even today at 6 years old, I still have to be careful with him. Jesse knows he’s not allowed near the road at home, and for months, he wouldn’t go near it. Then out of the blue, we’ll find him halfway up our street, saying he’s following the dog, although I’m pretty sure it’s the other way around. Jesse will sometimes remind me to stop and look for cars when we’re out, and other times he’ll step right in front of traffic.

The only way to manage and limit the possibilities of occurrences is to find controls that work for your child. I’d advise parents to adopt a checklist of things to tick off when at home or going out in public, especially to a new environment:

  • Dress your child in bright colors or consider an ID bracelet.
  • Ensure your house is child-secure — we have door handles, locks, heavy deadbolts and permanent security window screens. I always make sure everything’s secure.
  • Talk to your child about dangers. I use social stories with Jesse, especially in new environments.
  • Tell family, friends and schools you have a wanderer so they’re aware and alert.
  • Tag-team supervising duties with your partner. Jesse’s dad and I constantly check in with each other at home and out, and we’ve developed our own sign language for communicating Jesse’s movements.
  • Know your child’s triggers. Jesse loves water and animals, so if either of those two triggers are around, I have to be extremely vigilant.
  • I’ve also heard small tracking devices on children might help with extreme cases.
  • Most importantly, when you’ve lost your child, get help. Tell people, notify authorities and get as many eyes out there looking as possible. Sometimes we panic as parents in these situations and don’t think clearly, which is absolutely normal and understandable, but maybe not the most practical approach.

But it’s also important not to beat yourself up too much over these situations. Instead, learn from them. As parents of children with autism, we can be our own worst enemies. I’m still learning not to be so hard on myself and take mistakes as personal failure. We won’t get everything right, but that’s OK as long as we keep loving, learning and going forward for our little ones.

Jesse is definitely getting better as he gets older, but my overprotectiveness is well and truly ingrained and will be something I probably do well into his teens, much to his and his father’s disgust — but that’s another hurdle for another time.

Follow this journey on Jesse’s Mum.

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What Little Steps Mean for Someone With Complex PTSD

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Post-traumatic stress disorder, for me, is debilitating.

I wake up most mornings, if I’ve managed to sleep despite the monstrous cocktail of medications I take, gasping for air, bolting to an upright sitting position and clutching my chest. It feels like my chest is caving in. It takes me a minute to figure out where I am, what year it is and if I’m in another nightmare. Yes, kind of like “Inception.” My mind has turned on me, warping every noise and every step into a dangerous situation. This is normal for me, although I use the term “normal” loosely.

I isolate myself. I spent two months inside a literal blanket fort earlier this year because I was too afraid and ashamed to leave the comfort and safety it provided me. I’m a 33-year-old adult. I left to pee, at least, and to attend my various doctor and psychology appointments. 

What makes PTSD complex? Although Complex PTSD (c-PTSD) is not a diagnosis in the Diagnostic & Statistical Manual (DSM) at this time, it’s widely accepted in psychology and psychiatry circles as a more severe form of post-traumatic stress disorder. The complex part is added when someone has been subjected to prolonged abuse, torture or kidnapping — trauma spanning more than one single or acute event. 

For years I functioned carrying this PTSD around; it attached to me like a shadow. Sometimes I was stuck in it, sometimes it trailed behind and sometimes it spanned in front of me, outlining difficulties and pain I could not escape. It would invade personal relationships and friendships, causing havoc and unfortunately, destruction. It causes me to react differently to situations than others. I often have what is called a “flat effect,” meaning I seem withdrawn and emotionless. I may flinch if touched unexpectedly.

But because of all of this I thrive in crisis and found myself gravitating toward stressful jobs. I performed calmly and rationally under stress because it could never match the stress I’d already endured. I compartmentalized. I functioned. I put myself through school while working full-time and volunteering. I chose a path, set my mind to it, managed my stress, knew what might “set me off” and dealt with life in a way that worked for me. I slept well. I enjoyed things.

And then it happened. I was assaulted at work. I was working in a hospital and a patient was having a bad day. There was an altercation, I lost consciousness twice, sustained several hits to the head, broke my tailbone and more. This occurred a few days after the 15th anniversary of my eldest brother beating me for nearly two hours while suffering a psychotic break. Everything crumbled. I stopped sleeping. Nothing was safe. I moved twice, stopped talking to or seeing my friends, didn’t reach out and fell into a dark place.

The term “re-traumatized” was muttered between professionals and more than two years later I’m still home, afraid to turn all the lights off when it’s time for bed and uncomfortable with silence at any time, even with raging migraines that knock my sight into blurred and double vision. 

I have to retrain my thoughts. Every second of the day is a battle, whether I have a flashback, which literally feels like I’m being attacked again, or if my mind is telling me someone around the next corner is waiting to attack me. I spent weeks, if not a couple months, in my early therapy days taking one step after another and repeating the same sentence of reassurance. Every step I would think, “I’m going to be killed/attacked/murdered/kidnapped” and internally I would then yell, “I’m safe in this second. There’s nothing hurting me.” Then I would take another physical step and repeat the process. This allowed my comfort zone to grow, step by step, systematically conquering fear after fear.

Fear is what is central to my c-PSTD. It wraps itself around me, pounds me with thoughts of violence and throws memories at me that make me unaware of myself, my surroundings, what year it is. It tightens around me like a vicious suit of armor, crushing my chest, clogging my thoughts, running my resting heart rate from my old 55 beats per minute into a sometimes constant 155 b.p.m. 

By mid-afternoon to early evening, I want to give up. But I have a list of positive things to do and say, so I do and say them. I go through all these motions and no one knows. No one sees because I stay inside, suppress my panic and disguise my sweating with the summer sun’s rays until I’m home and I can deflate. 

But day in and day out, I have to find little victories. Everyday reminders of what life was like before. It’s all about these little steps: I bathed today; I took the bus farther than yesterday; I did something nice for myself; I went to a social gathering; I didn’t hide; I’m safe in this second. There’s nothing hurting me; I’m safe in this second. There’s nothing hurting me.

I have to believe that someday I will again be self-sustained. I will defeat and change my cognitive processes that have turned on me. I will take those steps. I do take those steps. Someday, c-PTSD will fit nicely in my back pocket again. It will always be with me, but it will not always crush me. I can’t stay angry that this has all happened to me. Anger keeps me sick. Fear keeps me sick. Hope, no matter how small a sliver, keeps me alive. I struggle, I fall, but I get back up.

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When I Watched a Man With Down Syndrome Dance With His Dad

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Parents of children with special needs can get used to the stares of strangers when they’re out in public. I must confess that at times I’ve let my gaze linger upon certain families, but not for the reason you might think. My eyes are drawn to them because I’m also a mother of a child with special needs. I feel a certain kinship with other families and wish I had time to learn their stories. I also look at them because I see the love in their interactions and the beauty in their children. I hope if they did happen to notice my gaze, they’d see it was one of friendship, and I try and share a smile with them whenever I can.

One family in particular stands out in my mind. I saw them one hot summer night when my family attended an outdoor concert. The music was wonderful, but watching this family dance was the best part of the evening. An older father had brought his adult son who had Down syndrome, and I found it difficult to take my eyes off them. I didn’t mean to stare, but the moment was one of the most beautiful, precious things I’ve ever seen. I desperately wanted to talk to them, but out of respect for them and their joyful evening, I simply admired from a distance, tears in my eyes and a smile on my face.

The son was awesome; there are no better words to describe him. His gleeful abandon as he experienced the music and his love of dancing was infectious. He clearly had rhythm, keeping right in sync with the drumbeat he so obviously loved. There was even a colorful Slinky he waved around in time to the music. I was concerned at one point that other concert attendees might have been looking at his unique dance moves with scorn or derision, but that didn’t occur. There was simply happiness and laughter and music, and the rest of the crowd seemed to appreciate his enthusiasm.

The father looked to be in his late 50s or so, with salt-and-pepper hair and a kind face. He danced with his son and watched him freely float about the dance floor. Since his son was an adult, I imagined this father had been parenting for many years, yet there was no weariness visible in his eyes. I saw only love, and it seemed to me as he looked at his son that he still saw him as his little boy. The father smiled as his son lost himself in the dance, and his child’s joy became his own. I took note of the way he sometimes watched from a distance and allowed his son space to express himself, yet gently guided him in the right direction when needed. He was amazingly tender and patient and attentive. Any child would be lucky to have a father like him.

The scene got even better when even more family members arrived on the dance floor, including grandbabies. It was touching to see how excited the son became when his little nephew arrived and to watch him lovingly stroke that little head. I watched the father wrap his arms around the toddler and his son, and then the three of them danced together. It was a beautiful dance. He looked like a doting grandfather leaving an incredible legacy to his grandchildren through his positive example. I believe they will grow up knowing not only how to be kind, compassionate people, but also how to be more accepting toward those who may be different in some way.

As other relatives continued gathering on the dance floor, I saw a family united. I thought how wonderful it was that someone with Down syndrome could be born into such a caring, close-knit support system. They all seemed to treat each other with acceptance, respect and love. Perhaps they’ve had many incredible adventures together over the years, like the exuberant dance party that weekend.

I don’t know if that father will ever read this. I wish I could tell him, as a fellow parent, that I admire him. It was a privilege to “meet” him and his son, even if from a distance. In those few moments I learned a lifetime of lessons, and not just about special needs parenting. Watching the father’s behavior made me want to be a better parent and a better person. I want my eyes to shine with the kindness and joy I saw in his. I want to experience the deep connection he seemed to have with his children and grandchildren.

I also want to dance like I saw the son dancing: full of enthusiasm and free of inhibition. I want to love my family the way I saw him love his. Both he and his father looked like people I would like to know, and watching them inspired me and touched me. On days that I feel discouraged or weary I recall their dance, and my spirit is lifted.

So, dear father and son, thank you for showing such beauty. I wish you all the best and hope you keep on dancing.

A version of this post first appeared at Seriously Not Boring. Jennifer can also be found at her Seriously Not Boring Facebook page.

Lead photo source: Thinkstock Images

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Why I Don’t Mind People Staring When My Brother With Autism Eats

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My family traveled a lot so hotels and restaurants were just part of our lives. Then my brother, Christos, was born and diagnosed with autism at the age of 2. After the diagnosis, I remember how we packed an entire bag of just his food and cooked it in the hotel room so we could take turns going to the restaurant. He ate soup, pasta or rice every day. As he grew, my parents incorporated more foods into his diet, but during the rare moments we actually went to a restaurant, it had to serve pasta.

Christos didn’t care what was on the menu or what the specials were. He didn’t care if there were 10 different types of pasta or if the fish was fresh out of the Mediterranean. He just wanted pasta and tomato sauce. Not bolognese, not arrabbiata and not tomato and basil. Just plain tomato sauce.

Dora Perera the mighty.2-001

At first, we started taking him to restaurants after he had already eaten. But we had to bribe him with iced tea or chocolate ice cream to sit still while we ate. Sometimes it worked but mostly it didn’t. Then we started making pasta at home and took it with us in a plastic box to the restaurants we went to, along with the sauce and halloumi cheese. We were amused when we would see everyone’s jaws drop at the restaurant after we took out the plastic boxes for the pasta, sauce and cheese, especially when it was an Italian restaurant. I grew up with Christos so that was my reality. That was how children behaved for me. I didn’t really understand why it was so weird to others or why people would stare.

After he was done eating, like any child, he wanted to play and explore his surroundings. He didn’t play like other kids. His playground was his mind. So the kid who ate pasta out of the plastic box would then make “funny noises,” run up and down, flap his hands and rearrange the cutlery on the other tables because he didn’t think they were properly positioned.

I get it. I see why people would stare but that’s my brother. That’s my little brother being happy and showing us how happy he is. The thing that got me the most was when parents grabbed their kids and pulled them away from him. He wasn’t trying to attack anyone or trying to stab people with forks. He was an innocent 10-year-old who played differently. He was so excited by his surroundings that this was the only way he could express himself.

As he grew up, it became easier for him to adjust to restaurants. He has a process that needs to be followed. If it isn’t, then there’s trouble. But not for me. The flapping, moaning, jumping up and down or repeating the same word over and over again is my reality; it’s what 17-year-olds do in my eyes. The trouble was for the other people in the restaurant, because he wasn’t sitting at the table, playing on his phone and ignoring his family. Instead, he was hugging us and asking for our attention and affection; apparently, that’s something worth staring at, pointing at and whispering about.

Yes, there are times when we need to step in because the waiter doesn’t understand that all the Coca-Colas in the fridge need to be facing the same way or when he wants penne but they only have spaghetti. But is that worthy of seclusion?

He slowly learned to try other kinds of sauces. He even eats Parmesan cheese now. He eats other kinds of pasta, not just spaghetti. He even eats pasta with fresh cream and salmon. My brother eats salmon! You have to be an autism family to understand the excitement. We don’t take plastic containers with us anymore, and we don’t have to bribe him to sit still. I don’t want him to conform to the world, I want the world to conform to him. Going out to eat is a big deal; it’s a break from routine for us and for Christos and he enjoys it so much. Why should we worry if he’s standing up just because he’s happy. Is it wrong? We have our own restaurant etiquette and people can stare all they want; maybe they’ll learn something.

Maybe they’ll learn everyone deserves a break. It’s OK for a family to treat themselves to dinner when they can’t find a sitter for their son with autism.

Maybe they’ll learn the family sitting at the table in the corner who brought their own food probably spent the entire day worrying about that hour-long outing.

Maybe they’ll accept that happiness can’t be reined in when you’re happy and it’s OK to express it.

Maybe they’ll understand that a 17-year-old boy who hops and skips isn’t a danger to society.

Maybe they’ll learn to accept others, and when they do, their children will learn to accept ours.

Dora Perera the mighty.1-001

Follow this journey on Just a Boy.

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When Epilepsy Changes How You Pack the Diaper Bag

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PicsArt_1438811680107 I was sitting in the waiting room outside our doctor’s office with my two sons. My youngest had just been diagnosed with Tuberous sclerosis complex (TSC) after having two seizures at home. He was 3 months old.

With us sat another mom also holding her infant. Our actions mirrored one another as we sat outside the door. We both would stand up and walk around with our babies, sometimes lingering close to a window; one or both of us would be rifling through our diaper bags for a small toy. As I watched her reach into her bag, I wondered, and almost hoped, if she also had to reach around something in her bag that made her baby different, like mine.

It was only a few short weeks after my son was diagnosed and I felt a desperation to cure this unknown loneliness I was feeling. I had two seemingly healthy boys, but despite the outward appearance, my baby had a rare disease that epilepsy unveiled. If that wasn’t disheartening enough, he’d developed a rare form of epilepsy called infantile spasms. Most literature refers to it as “a catastrophic form of epilepsy.” This was always at the front of my mind, especially when I took him out in public. To an onlooker or to someone like this other mommy at the doctor’s office, his seizures didn’t look like epilepsy. My son’s arms and legs would flex out in a rhythmic motion and his trunk would draw into center. It could be mistaken as the “startle reflex” common to infants, but my son would make these motions over and over up to 15 minutes at a time. Each motion was another seizure. I always had to be ready and prepared to intervene if necessary. On this day while looking through my diaper bag, my hand brushed up against the seizure rescue medication. It was always a reminder of how different our lives had become and how lonely I felt.

I watched almost enviously as the other mommy pulled out toys and diapers from her bag void of the rescue medication. I didn’t want to be the only mom who not only worried about keeping her infant quiet in the waiting room, but also worried about whether or not I would be using this medication to stop my son’s seizures. I was sad thinking about the day I removed his toys to make room for a medication that may someday save his life, and I became angry.

A few minutes in the doctor’s office waiting room was enough to remind me that we were now different and nothing would ever be the same. A flood of emotion about all the things he would not be able to do crashed down on me as I sat silently holding my little boy. Epilepsy can be a thief if not controlled. It can take away developmental progress and can deny someone of a normal life even when they’re too young to realize it.

A seizure is not “just a seizure.” It takes over and steals the peace of mind from mommies like me. My baby is now 7 and his epilepsy is still not controlled. Instead of watching his little body silently lose control as it did as an infant, he now falls to the ground and shakes violently. The only noise is the grunting he makes as he struggles against the involuntary movement of his body. And I’m always hoping it’s the last seizure I see.

The last seven years are full of memories like that afternoon at the doctor’s office where I have felt crushed and alone, holding back  tears, surrounded by strangers, silently wishing someone else was just like us and so tired of feeling alone. It’s better than it was,but going out with a child who struggles so much can be difficult.

Please remember this story and remind yourself to be kind to others.

Because at any moment, someone is silently struggling.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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What It’s Like to Walk Into a Building When You Have Sensory Overload

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My Kryptonite comes in the form of sensory data. Smells in particular. This is kind of hard to avoid when you live in this world and you want to be with people, so this is why I am standing outside the museum I used to spend a lot of time in, trying to gather the courage to go inside.

Both feet are firmly planted on my favorite brick in the walkway, the one inscribed with a deceased family member’s name, as I try to gather strength from her memory. Somehow, standing on that brick just so and looking up at the elegant building centers me, prepares me for the onslaught of sensory and mental overload I know is coming. Fragrances, chemical smells, or just the idea that these things might exist in any given place — this is enough to completely short-circuit my system.

I open the door, and I walk in, and I freeze, as I usually do, but I make myself keep going. There are places where smells genuinely overwhelm me. Then there are places where it’s just the idea of smells that overwhelms me, and it takes some time for me to tell the difference between the two. Often, it’s a mixture of the two. My brain is sending me signals telling me how dangerous this is, and anxiety overwhelms my body. People always want to know, “What happens to you when you go in buildings?” and I never know how to explain it. How can you? This time, though, I think I might finally have found the words.

It feels like being under attack. It feels like hyper-vigilance. The sights, the sounds, the motion, but especially the smells and the feelings in your body, come into sharp focus. All I can think and feel is the way my body feels. Everything feels dangerous. I scan the environment looking for threats. My brain gets fuzzy. There is a feeling of pressure on my head. I feel frozen and a little short of breath. It takes effort to move the limbs of my body in order to take a few steps forward. I’ve only gotten halfway down the hallway and I already feel like I’ve ran a marathon. I wonder if I can go any further. I don’t want to stop. I’ve come this far.

I stand in place and stare ahead, begging silently for someone to offer comfort, for something to take me out of this increasingly intolerable inner hell. I try to smile and be companionable to the people around me, but all I can manage is to look suspiciously around me, trying to suss out danger. I take a few steps. There’s no one familiar around. No one to act as point of refuge. Everything looks different. I know if I can just get in to the other room, the person I’m looking for might be in there. I try to ignore my thoughts and move forward slowly, each step feeling like I’m wading through molasses, each step an effort.

I walk through the door of the room to the right, thankful beyond belief there are people in there so I don’t have to go to the room I’m most uncomfortable in. Then, with utter relief, I spot the person I feel most comfortable with and walk over to her, knowing she’ll know what to say, and she’ll realize how hard it was for me to be there. She hugs me and calls me sweetie, and relief floods me. Words are hard and thick but they come out, so grateful to have a home. She has to leave, though, and rubs my arms before leaving. I am grateful for the affection, but nervous about finding someone else to talk to.

Someone recognizes me and says hello. She has a compassionate energy about her. I forget all my usual manners and ability for small talk, all the superficial questions that people use to create conversations with strangers, and start babbling about how I haven’t been here in five months and how nervous I am. Then I backtrack and ask where she’s from and try to be “normal,” but the words just don’t come and I can’t think of what to say to try to act casual, and she’s telling me that I’m doing fine but I can’t quite believe her. She leaves, and then I see someone I know from somewhere else. He’s friendly and he feels more like an anchor. He asks if I want to go upstairs with him to the service. I decide to,  and manage to sit through the service, the thoughts in my head as usual taking over about 10 minutes in, but managing to keep it together long enough to stay.

There is no opportunity for socialization afterwards, but the guy I sat with offers me a ride home and my heart feels full for having been noticed and cared for. I decline because I realize I can’t handle a new-to-me car and the walk will do me good. I go to an eatery I like hanging out in because I know I need social interaction to deal with the emotional fallout of having gone in a challenging building, and going to my apartment will make the emotional fallout intolerable. It helps me feel somewhat safe and stable again.

As I walk from the museum, I am aware of the feeling of not being able to breathe well, of feeling stiff and agitated and like my internal organs are all squeezed up against each other, but I wonder, was it worth it this time? This time, I think maybe. If this is what I have to do to fill the emotional dead space in me, if this is what I have to do to fill the aching loneliness and emptiness that makes getting up in the morning and living in this body such a challenge, then maybe I can do it. It just would be nice to occasionally have days that don’t involve coming to terms with the non-functionality of my body, but since I don’t seem to have a lot of options, I’ll try my best and write about it after to cope with the emotions from it.

Or as they say in Latin,”Veni, vedi, veci.” I came, I saw, I conquered.

Follow this journey on Aspie From Maine. The author welcomes comments from others who can relate to her struggle; email her at [email protected].

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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