dad and son with autism at the wedding

When My Son With Autism Surprised Me at a Wedding

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My niece, who is more like a daughter to me, got married this weekend, a huge affair with loads of people and loud music. My son, a 15-year-old boy on the autism spectrum, was a groomsman in the wedding. It was also the hottest day of the year up here in the northeast. With the heat index, it was 110 degrees at noon and still 100 degrees at 7 p.m. And he was in a tuxedo.

We started off the day rushing around to be able to board a bus to get to the park around 3 to take pictures, where the photographer dragged us from one end of the park to the other requesting that my son make a lot of different poses. I found myself thinking, “I wonder if this guy knows he has autism because this could end badly.” After an hour, with all the photos taken, we got on the bus and my son took out his phone and started taking pictures and laughing. I think he had just about been pushed to his limit at the park, but he held it together. I was so surprised and so proud of him.

dad and son with autism at the wedding
Me and John

We went from the park to the venue where the wedding and reception were being held, and after a brief respite we had to go outside for the ceremony again. It was still blazing hot. Sweat was rolling off people in buckets, and my son was supposed to stand up there, still in a tuxedo, in a line with the other groomsmen and hold it together while the ceremony went on. I found myself thinking “I hope everyone in the audience knows he has autism because this could end badly.” But then the ceremony was over, and he had stood pretty much perfectly still the whole time. He went inside, found his date (another first) and walked her around the cocktail hour taking pictures and making sure she met every member of the family. Smiling and laughing the whole time. I was so surprised and so proud of him.

After an hour in that room, the reception started. He walked in and was announced into the reception with the bridal party, after waiting in yet another line to get in. The music was mellow at first, but then the party kicked into high gear. The music got loud and bass heavy. He took to the dance floor some with his date; they danced and laughed. They went to the photo booth. They enjoyed the party. About an hour and a half before the party ended, I realized he had left the table and wasn’t anywhere in the room, so we went looking. He was in the lobby. He told us the music was just too loud so he walked out there.

As I reflect back upon seeing him in that lobby chair, still pretty happy but just doing what he needed to do, I realize it’s a moment I’m immensely proud of him for on top of a day I was already immensely proud of him for. He had his limits pushed all day. He got through all the important parts. He stayed engaged for as long as he could. When he felt like he couldn’t do it anymore he found a way to solve the problem all on his own. It was true autonomy.

One day I won’t be here anymore, and that’s a thought that’s usually never far from my mind. Days like this, however, help to push that thought out of my head sometimes. Just for a while, my mind takes a little rest, and I have a little hope that he’ll be OK when that time comes. These fleeting moments of peace of mind are a gift from him to me that he doesn’t even know he gives, and I love him for it. I think now, what I need to give back to him, is to stop thinking so often that things could end badly.

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How Autism 'Awareness' and the School System Failed My Brother and Me

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There is a photo of me at 3 years old. I am standing in a meadow on the tips of my toes, arms scrunched up like a t-rex, hands blurred from excitedly flapping.“You were so cute!” my family members coo when they pass this photo. These are the same people who look at me and say, “You can’t be autistic, you’re a girl!”

I hit developmental milestones quite differently than others. For instance, I never learned to crawl forwards, I was speaking complete sentences at a year old and reading books by 3. I wasn’t potty trained until I was almost 4 and said to my mother, “I am finished with diapers,” and that was it. I would bolt and hide in clothing racks in stores and cry when my parents made me try something new.

Sensory wise, I was notoriously known for my aversion to dirt, anything soft, loud noises, flashing lights, and many other things. I walked on my tip-toes constantly, chewed apart all of my shirts and gel toys, rocked and spun enthusiastically. I struggled with math concepts to the point where I barely skimmed by. I used to cry constantly in preschool and elementary because I couldn’t regulate my sensory system or handle my surroundings. I was often in the principal’s office because teachers misunderstood me trying to comprehend with me being insubordinate. In middle school, when a psychologist brought up Asperger’s syndrome with my mother, she laughed and called him “crazy.”

My brother is a different story. He didn’t speak coherently until he was 4. He flapped his hands, walked on his toes, and would bolt down the street and away from my mom so often that he had to wear a leash in public. No matter the lock we tried, he would take it apart just for fun and giggle as my mom scrambled up the street to catch him as he ran right towards the backyard pond. He would find anything he could stack and climb on, often climbing on the coffee table and diving into the floor or couch. My parents covered our tiles floors with foam mats and made him wear a helmet when he was particularly riled up. He attended speech therapy, but never had a psych evaluation. Throughout elementary school, my brother struggled to pass and was a renowned trouble-maker. Our mother asked for an evaluation every year, and every year his teacher would say, “He just needs more discipline.”

It wasn’t until April of this year that my brother and I were finally diagnosed, at the ages of 18 and 12. I am diagnosed with autism spectrum disorder (ASD), obsessive-compulsive disorder (OCD), generalized anxiety disorder (GAD), and dyscalculia. My brother is diagnosed with ASD, ADHD, global developmental delay (GDD), dyscalculia, dyslexia, and dysgraphia. We both desperately needed IEPs and accommodations, but he didn’t get his until this year, and I was too far into my education to get the help that would have allowed me to achieve exponentially higher.

We need to reform the way we treat our children in the education system, and promote autism acceptance. We need to stop the fear-mongering that often comes with the “awareness” campaigns and scares parents away from helping their children and seeking a diagnosis.

We need to tell parents: this is your child, he is not broken, and she just needs different accommodations than others.

We need to teach people about the entire spectrum and how to love and accept those on it. We need to be more proactive in diagnosing autism in girls and reforming the way teachers recognize children on the spectrum.

We are not bad people. We are autistic, and we need to be seen and heard.

Image via Thinkstock.

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To the Husband Who Became an 'Autism Daddy,' From Your Wife on Our Anniversary

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Today is my 11th wedding anniversary. As I stare at a random picture of our wedding day, I think back to how much we still did not know about each other. Over a decade has passed, and he constantly surprises me by revealing the depth of his character to our girls and me each and every day. I have asked him from time to time if he knew how our life was going to turn out would he still have said, “I do.” He never misses a beat and always says, “best decision I ever made.”

wedding photo

To understand how deep my appreciation and love for this man is, you would have to know his background. I met my husband when he was already a combat veteran assigned to the 3rd Ranger Battalion. He was built like a brick and had a no nonsense Ranger attitude. He was a serious, competitive and determined person. Physical fitness was of the utmost importance to him, and he strived for excellence in everything he would do. He was a complete gentleman towards me, and for the first time in my life I felt cherished by a man. We only dated six months before he asked me to marry him, I immediately said yes.

Five years later my husband was knocking out every bit of his five-year plan he set forth before we were married. When it was time, we tried to start a family. We got pregnant easily with our first daughter, Gabby. When she was born, my husband was just starting his new career as a Federal Agent for the U.S. Government. He was working nonstop. The drive in him to provide well for our little family pushed him to take every available overtime job. He wanted me to stay home with our new baby girl and care for her. He was adamant about shouldering the complete financial burden of our family.

He and I both knew something was different with our little girl right from the start. To say our child was fussy would be an understatement. She would not sleep and would scream day and night until she would pass out from exhaustion. The only way to comfort her was to rock her incessantly or drive her around in a car. This lasted for two years. When she started missing all her milestones, we took her to a therapy center. Some time passed before they gave us her diagnosis. She is on the autism spectrum, and has ADHD, anxiety, panic Disorder and lack of coordination.

When he received the news I knew deep down he felt devastated, but outwardly you would have never known. He thanked the medical professionals who gave us the news, scooped his daughter up and drove us home. In the weeks and months that followed, he held our family together. While I struggled, he kept going like nothing had changed. The only reason I knew it had affected him was when I would find him in his office late at night reading the internet about “ways to improve a life for an autistic child.”

I always say he took the autism diagnosis on the chin. He never faltered or wavered. He would talk to anyone he met about our little girl. He was proud as punch about her being able to finally successfully complete a feat a neuotypical child may have done years earlier. This incredibly competitive man was tickled when his daughter could finally ride a trike instead of a bike with training wheels.

daughter mowing the lawn with daddy

His patience and understanding for our little girl has been humbling to watch. He is a proud autism daddy. While he normally wears a North Face t-shirt, every once in a while I see him sporting a shirt with a puzzle piece on it. He will enter races for charity to support Autism Speaks and any other disability-related cause. He is a favorite at my daughter’s autism school, bringing in truckloads of snacks for the kids monthly. He smiles and gets down to their level and always makes each and every one of them feel special. He talks about ways to increase his retirement pension to be able to provide for our daughter in the future. He constantly throws out ideas about how, if we win the lottery, we could buy property and build facilities to teach and educate children and adults with disabilities about life-skills, fitness and education.

Although the statistics say a marriage is much more likely to end in divorce if you have a child with a disability, he has constantly shown me his sticking power. His word is his bond, and he has no intention of ever wavering. Our marriage is far from perfect. If anything, it’s perfectly flawed. We are just two imperfect people who have never quit on each other. Even when I have wavered, he has carried our family on his broad shoulders forward. I am truly blessed to be married to this man, and our daughters are extremely lucky to have him as a father.

You don’t read many stories about fathers who are going above and beyond to care for their disabled daughter. You often hear about mothers who are soldiering forward, carrying the weight of special needs parenting all by themselves. Mothers are usually the focus of stories about special needs parenting. So I wanted to share with you our story in hopes that it will shed light on other fathers and males who have taken up the role of autism daddy — the parents like my husband, who are doing it so well.

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On Acceptance and Unconditional Love of Autistic Children

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As a parent, I often wonder if my children feel as if I love them unconditionally. Recently, I finished reading “Love That Boy” by Ron Fournier.* The reason I chose the book? Well, when I read the excerpt, it made me cry. Why? The last part of the excerpt resonated with me. It’s all about acceptance and unconditional love.

*Disclosure: I received this book from Blogging for Books in exchange for my honest review. All opinions expressed herein are my own.

So, I will show you the last part of the excerpt from the book — the part that made me bawl uncontrollably for a few minutes before I got myself back together again. It goes like this:

“I hope I don’t let you down, Dad.”

What kind of father raises a son to worry about embarrassing his dad? I want to tell Tyler not to worry, that he’d never let me down. That there’s nothing wrong with being different. That I actually am proud of what makes him special. But we are next in line to meet the president of the United States in a room filled with fellow strivers, and all I can think about is the real possibility that Tyler might embarrass himself. Or, God forbid, me.

As I read those last few sentences, tears welled up in my eyes. Do I demonstrate true acceptance of my son? On the outside, maybe. On the inside, I worry all the time.

I feel compelled to be honest with you. First of all, I plowed through that book like a farmer reaping a harvest. As I read, I searched within myself for answers. This book made me think about the expectations I had of my son before his birth. Additionally, it made me think about how my expectations have changed over the years. While I pride myself on fighting for my son like I’m in a cage match where only one person leaves, I wonder how good a job I do of loving him unconditionally. It’s true. As his mother, I want the best for him.

So yeah, I want my son to be the best whatever he can be. But acceptance? Acceptance proves a more difficult challenge. Acceptance means I see him for who he is and I feel pride. If I think honestly and search within myself, I know I need to work on that. It’s not that my son doesn’t make me proud. Or even that he’s not a remarkable young man. No, it’s not that. It’s me and my expectations. Eventually, I must move from expectations to acceptance. Real acceptance.

Can you love your child and still feel embarrassed when he takes his clothes off in front of people? Of course. As I cringe on the inside, on the outside, I calmly remind him of his “Good Choices Chart.” Already, he’s got one X on his chart for failure to use kind words and a quiet voice. After counting to five, a practice he’s come to know as “Mom means business,” he’s still got his swimming trunks around his ankles.

What do I worry about here? That he’s disrobed and won’t pull up his shorts or that people at the pool have begun to stare. Do I feel that he will get embarrassed or do I feel embarrassed? Truth? He could give a rat’s behind what people think right now. He’s asked to leave the pool and I’ve gone too slow. He got my attention. Now that he’s received his X and gets the reminder that one more means no prize, he’s pulled it up (and pulled it together).

Our children know we love them. I’ve asked my sons if they know I love them, and they do. They know. But do they both equally feel the same level of acceptance? I need to work on that. After all, what matters more? That my children feel love or that they feel acceptance? I think they’re both equally important. I can set expectations for him based on what I know will create problems for him as he gets older, but that doesn’t mean I need to feel embarrassed about it. At risk of shoulding all over myself, I feel that I should just have this feeling of “nothing to see here, folks,” and handle the situation in a way that models both reasonable expectations and unconditional, all-accepting love.

So, at the end of the book, Fournier gives a few tips to parents that I think deserve some mention. After all, we’re all doing the best we can, but sometimes we just need the reminder from someone else about that one thing we haven’t tried doing yet. I won’t elaborate because I want to leave you to read the book yourself. It has a good message and tells the journey of a man who, while attempting to bond with his autistic child, finds the road to acceptance. So, here are your tips (from Fournier):

1. Don’t parent for the future, but for today. Fournier suggests we create small moments and then cherish them. Next weekend, we plan to take a trip to the zoo and I plan to enjoy every small moment of our trip.

little boy doing his homework 2. Guide, don’t push. We can guide our children along the path to success, but we should not push them. If you’re pushing, not only does your child feel pressured, but you do as well. For instance, my son wanted to try karate, so I signed him up. He earned a few belts, and then he stopped wanting to go. Do I pressure him to continue, or allow him to choose his own path? Honestly, if I had pushed him to continue, we both would have felt miserable.

3. Don’t beat yourself up. I need this reminder daily. No, I mean hourly. We all feel guilty sometimes, but Fournier states that we should not wallow in guilt. According to Madeline Levine, “anxious parents make anxious children,” so I’m glad my husband doesn’t feel nearly as anxious about, well, everything as I do. Take a deep breath. Relax. Let it go.

4. Celebrate all victories. Every time my son does something unexpected or new, we feel elated. Even the smallest of victories are still victories. My son decided today that he would compromise with his brother rather than fight with him about not doing things his way. This, my friends, is a victory. I felt so proud I shouted it out on Facebook.

5. Slow down. If you sign your child up for so many activities that you feel overwhelmed trying to keep up with them, maybe pick a couple he or she could do without. Refer to number 3 when you decide to let something go.

6. Make different cool. Guess what? Lots of people who defy societies “rules” do really cool things. What’s different about your child that makes him the good kind of special? Tell your children that not being sheeple is actually cool. While everyone else goes to the party and smokes weed, your child decides to stay home and read a book. Different. Cool.

7. Be a spouse first and a parent second. Honestly, I know my husband feels neglected and I need to work on that. Once our children leave our home, I don’t want us to feel like strangers to each other. We’ll be all we have left. That’s why it’s so important to keep the relationship alive.

8. Share. Sometimes the “bad” news is actually good news. When my son got diagnosed with autism spectrum disorder five years ago, we told everyone. They needed to know, research, and understand him. Not all autistic people are alike, but they share many characteristics, and sharing the diagnosis helps people understand. And if they don’t understand, you help them understand.

9. Fight for your children. Yes, raising a child takes a village. Sometimes that village needs a little push to step in, but you can get what you need for your child. If it takes 50 phone calls, bringing advocates to IEP meetings, or communicating that you accept no less than the absolute best from whomever cares for your child, it’s worth it. Never, ever give up on your child.

10. Channel your inner Aspie/Autism. There is so much to value about people on the spectrum. Maybe your child, like mine, lacks the ability to lie. Or, maybe your child knows more about dinosaurs than anyone else. That’s so cool! Not only that, but when you’re sad, your child may not understand why, but he or she picks up on it. I’ve mentioned before how my son responds to my feelings more than anyone else. He has so much empathy that I’m certain he feels my feelings on a deeper level. I can identify with that. I do the same thing (I call myself an emotion sponge). Think about all the good qualities that your child has that not only makes him or her different, but awesome.

As I reflect on my parenting and my thoughts while caring for my two children this summer, I feel that I still have a lot to work on, but I’m getting there. Acceptance and getting to know the awesomeness of your child can present some challenges, but it’s well worth it.

Begin your journey to acceptance. Tell me what’s awesome about your child.

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When I Let Go of a Stim That Caused Me Harm

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Everyone stims. Stim is short for sensory stimulation. Those of us on the autistic spectrum tend to have less control over our stims and the need to do so, but every human stims to a lesser or greater extent. Stimming is something that happens with emotion. That emotion can be good or bad, and for neurotypical people, those stims might often be less exaggerated.

I was diagnosed with Asperger’s syndrome later in life than most. When I look back at my younger years, I can see the stims I had and how being told off for “fidgeting” led to more meltdowns, especially as a teenager. As an adult, I’m more aware of my stims, and while I can still find them embarrassing if I catch myself stimming in public, I can also see their importance in helping me process.

There is a hugely positive side to stimming. I love the feeling of rubbing my hands up and down my thighs, the way it can calm me and make me relax. I love when I tap my thighs with my hands or click the lid of a pencil; it helps me focus. Tapping my fingers on my thumbs when walking alone at night in the dark (after work, for example) helps me feel safer. Rubbing my newly shaven head has replaced wrapping my fingers in my hair for a feeling of security. Sometimes just the pleasure of making a random clicking sound with my tongue can make me so intensely happy. My stims largely involve touch, but that clicking sound is the most beautiful thing at times.

As a teenager, one of the stims I picked up was scratching my arms. It went along with cutting myself (one of my forms of self-harm). The scratching came from feeling like I wanted to crawl out of my skin, and looking back, it’s one I developed after a particularly harrowing incident where I was held at knifepoint by another teenager I knew. I’m still not entirely sure why he did it, but it threw me into more chaos than I was already in, and the feeling of the scratching and the marks it made created a form of sensory relief.

The only thing is, it was easy to get carried away and scratch my arms bloody (this is possible even with the shortest of nails). And if anyone asked, it was easy to say my eczema was acting up (which it was through most of my teen years). It’s a stim I’ve since recognized as one to stop, because it often alternated with cutting my legs, and I started to associate them. They both involved a build-up of negative emotion. To be honest, I never thought I would be rid of the scratching. I could see no way out of it. Especially when things built up and my PTSD really kicked in. That was, until I met someone who has helped me stop.

In the past 18 months, I’ve exchanged scratching for rubbing my arms. It’s different from rubbing my thighs, as rubbing my thighs is always through clothing, whereas when I rub my arms, they are bare. I apply a lot of pressure when doing so, and whilst the visual aspect of the stim is not nearly as pleasing, the pressure works just as well and covers a larger area in one go. I’ve scratched once in the past 18 months. Once. And that was after a particularly bad build-up of emotion. How has this person helped me go from regular scratching to once in the past 18 months? Simple. I told this person how I equated the stim with my self-harm, and somehow, the more we talked, the more I felt able to let go of the stim, and I made a promise I would. One that on the grand scale of things, I have failed to uphold once. And considering the stim had been there since my early teen years, which was over half my life, that’s huge progress.

I’m starting to see that when I stim in public, it’s not a bad thing, and that it only tends to be my smaller stims, like the finger tapping, the occasional head rubbing, and tapping my thighs as I walk. I don’t vocally stim in public often.

If people want to give me funny looks, go ahead. I may look a little strange, but maybe next time someone asks you to stop tapping your foot when you’re nervous or clicking your pen, you’ll spare a thought for those of us who literally cannot control it.

A version of this post originally appeared on on The Ever Scribbling Nubbin.

Lead photo source: Thinkstock Images

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Drop the Deficit Mentality: Autistic People Have Dreams Too

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Sometimes people see a person on the autism spectrum and they think about all of the limitations. Truly, though, our autistic children have sparks inside of them that have yet to be ignited. When I look for those sparks in my son, I can see the abilities that have yet to be explored. Instead of thinking about what my son can’t do, I should spend more time focusing on what he can do. As Temple Grandin says, “There needs to be a lot more emphasis on what a child can do instead of what they cannot do.” On our bad days, I admit there is quite a bit of difficulty on focusing on the sparks inside of him. What if I focused on more on his strengths, though? 

10 Strengths My Autistic Son Demonstrates

1. He shows great ability to empathize with others. When I’m sad, he hugs me. When someone is hurt, he runs away because he cannot handle their pain. People assume autistic people have no empathy, but that’s not true. In fact, he shows a great deal of empathy.

2. His memory is fantastic. He can tell us what type of car passed by us with 100-percent accuracy every single time. He has memorized the symbols. Additionally, he knows what the body of each type of car looks like. Imagine the potential there.

3. In his mind, he can compute numbers using rules he learned long ago. He often challenges himself (and us) to figure out how to add multiple numbers together without actually writing them down.

4. A great capacity to love exists within him. He loves everybody. In fact, he shows us this all the time by giving hugs and kisses. Yes, that’s right, my son shows love.

5. When he sees a way to help someone, he jumps in and does it. He loves helping people. If we say something like, “Oh no! The cat is hungry. Who will feed her?” he literally runs toward the cat food and feeds the cat before anyone else can take his job.

6. Imagination. Yes, he has an imagination. He can imagine and act out what the dog might say when he refuses to go outside. He can imagine, but he has a hard time putting it into words or writing it down. Listen to him speak, though, and you hear it.

7. His self-awareness is outstanding. I can see that he understands what he has a hard time with and what he does well. He knows if he sees storm clouds coming, he will need his headphones. If there is a crowd, he knows he will need to find a safe space to take a break. I only wish other people were more aware of how to help him during these times because sometimes he doesn’t have what he needs even if he knows he will have trouble. This is not a weakness on his part. He knows what he needs. What he really needs is more people who understand his needs.

8. He keeps his brother safe. Given his past experiences, he can recognize signs of danger and will fiercely protect his brother.

9. Some say that flattery will get you nowhere, but my son knows how to schmooze for sure. Indeed, he tells just about every woman he meets how beautiful she is. He also tells men they are handsome. His newest thing is to say, “I’m going to tell on you,” and then he tells someone how someone has been nice to him or how someone has helped someone else out. He means every word of what he says, and genuine compliments mean more than the empty ones some people give.

10. This beautiful child of mine knows how to work a schedule, tell time, and, in fact, keeps us on schedule. If I listened to him more often, I would probably be late less often. My new strategy is to tell him what time we need to leave the house. He will always tell me when it is time to leave.

Why We Shouldn’t Ignore These Sparks of Intelligence

As Temple Grandin says, “You have got to keep autistic children engaged with the world. You cannot let them tune out.” How often do we tune out children? How often do we speak about them as if they aren’t there? How often do we fail to allow them to use their strengths to engage with the world? Dr. Lovaas says, “If they can’t learn the way we teach, we teach the way they learn.” All of this makes sense. Take a look at my son’s strengths. See the potential. He deserves to learn and be around other people and feel loved for who he is even if sometimes it becomes difficult for him. Where you see a spark, there is a fire. And when you see a fire, you look for tinder to keep the fire going. It’s time to stop extinguishing the sparks in our children and see their potential.

What sparks will you ignite in your child today?

Originally posted on EmbracingtheSpectrum.com.

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