What My Husband Sees That I Don’t When It Comes to Our Son With Autism

Selfies. They’re for the young at heart. In other words, not for me. I can’t tell you how many times I’ve grabbed my phone to snap a pic, and the camera — thanks to my darling, wrinkle-free faced, selfie-taking children — is reversed to selfie mode so when I look at the phone, boom, there it is, my 46-year-old reflection six inches from my face. I swear I have screamed and dropped my phone (twice). Who is that? What happened to that young-at-heart, firm-skinned girl I use to know? I think she can be found in old Polaroid Instamatic photos from the 1970s. Sigh.

Yes, the older you get, the less you recognize that reflection in your iPhone, iPad or mirror. Is that because how we see ourselves in our mind isn’t really what reflects on that high-grade iPhone glass, or are we just our worst self critics? Perhaps it’s just our old friend, denial, playing tricks on us by replacing that high grade iPhone glass with some distorted, age-advancing glass? I’m going with denial as I so often do.

I’ve always been a bit envious of my husband, Dan, and his reflection. Not only is he eight years older than me, but also he happens to look eight years younger than me, which makes me hate him … a little. You know the old, haggard-looking woman versus the distinguished-looking man phenomenon? Yeah, that. So unfair. Let these guys push out an 8-pound baby two or three times and see how “distinguished” they look then.

Although I think Dan is remarkably handsome (and I love/hate him for it), it’s not so much his “distinguished” looks that I envy most about my husband’s reflection, it’s his ability to see a fragment of our 13-year-old son in himself when he looks in the mirror (Dan doesn’t do selfies or iPhones so he only sees his reflection in mirrors.) A son who I would give anything to resemble me in the slightest. A son who I have spent 13 years trying to understand and trying to “get.” A son who someday when the iPhone 15 comes out and is able to capture what a person looks like on the inside, will look remarkably like my husband and nothing at all like me.

Ever since our son, Ryan, was little and I obsessed and Googled over whether he does or doesn’t have the “A-word,” Dan would shrug off my obsessive behavior and tell me, “He’s fine.” How could Ryan be “fine”? He spent so much time alone, his sensory system was constantly on overdrive and even though he was completely verbal, he had very little to say. “Fine” was not what I saw, but my husband did.

My husband saw “fine” because he saw Ryan each and every time he glanced in the mirror at his own reflection. Dan understands that an overloaded sensory system can make you edgy and crabby. He understands that a quiet night by his fire pit with only the joyful singing of crickets buzzing in his ears is better than an overcrowded, loud party with multiple conversations buzzing in his ears. Dan also understands that just because you can speak, doesn’t mean you have something to say. Mostly though, my husband understands Ryan in a way I never will. When I realized this, when I understood that Dan would always have a connection with Ryan that I wouldn’t, it kind of made me want to slap him in his distinguished-looking 54-year-old face.

Dan doesn’t have an autism diagnosis, but his reflection resembles Ryan’s more than mine ever will. They are cut from the same cloth, and both of them would tell me that they didn’t come from cloth. Ryan wouldn’t understand the idiom. Dan would understand it, but he would just think it’s a ridiculous thing to say. Father and son, similar reflections. And this is why, coming from that same cloth through every new challenge, through every new stage, through every new heartbreak Ryan has endured, Dan would assure me, “He’s fine, Mama.”

Just last week, when Ryan had a painful experience with a friend, I found myself crying in Dan’s arms and hearing those words again, “He’s fine, Mama.” Dan assured me that Ryan is “finding his way,” and although it has always taken him a bit longer than other kids his age, Ryan finds his way and he always seems to be “fine.” Just like I hate how Dan doesn’t look his age when I see his reflection in our shared bathroom mirror, I typically hate when he is right (because inevitably that means I am wrong), but there is no hate, there is no cursing him under my breath, there is only a little bit of envy and a great deal of love and gratitude when it comes to seeing him in our son.

Selfies may be for the young at heart, but sometimes it’s still fun to jump on the younger generation’s trend. And just like Ryan (who also despises selfies), Dan could care less about what’s trending, what’s in or what everyone is doing, but for someone like me, someone whose reflection is so different than both of theirs, I like the occasional selfie … with a nice blurred, dimmed filter.

It’s fun to drag my husband into one of my selfies every now and then while he grumbles and complains about it. For him, it may be ridiculous, narcissistic and trendy, but for me, having his 8-year-younger-looking face next to mine (still hate him a little) is a reminder of how much harder this autism journey would be on my own without his reflection in my iPhone.

A version of this post originally appeared on The AWEnesty of Autism.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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15 Things I’d Like Teachers to Understand About People With Special Needs

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I wrote this blog after being inspired by a piece I saw on The Mighty titled “35 Secrets of Being a Special Needs Parent.” I know a lot of individuals — especially educators — who want to know what’s going on in the mind of someone with special needs. Growing up with autism, I went from getting kicked out of two preschools to transitioning to three different public schools and then having to fight our school system to get me out of district placement for middle school and high school.

As someone who was once nonverbal, I wanted to share 15 things I wish all teachers understood about people with special needs. Of course, these are based on my own experiences.

1. We’re always a person first before you even discuss our disability.

2. We’re not defined by labels. It’s what we do and who we are that defines us.

3. Although we have challenges, we also have things we love and are good at.

4. If you’ve met one individual with special needs, you’ve met one individual with special needs. We’re all unique. Teach the way we learn. 

5. When we struggle, the worst thing you can do is feel sorry and look down on us. Help us find the solution when things get tough.

6. We’ll take advice, but because our perspectives are often vastly different, we may have to think it over before agreeing with it.

7. Some days may be drastically different than others. Accept the fact that sometimes there won’t be a blueprint of what happens on a day-by-day basis. Just go with the flow and try the best you can.

8. We’d like people to be accepting of others.

young children in a classroom

9. If we seem shy at first, don’t take that as us not wanting to be included; we may just need more time than others to feel comfortable.

10. We all want to be loved in some way. We all have things and people we want to show compassion for in our lives.

11. Accept that you may never know the struggles going on inside us. Then, accept that we all have inner struggles in our lives, regardless of special needs. Show empathy and compassion always.

12. Even though we may have a disability, we still revolve around our strengths and interests. Always remember that.

13. Although we may not be able to express and/or communicate our feelings at times toward our loved ones, that doesn’t mean we don’t want you around. On the contrary, when times like that happen we may need you more than ever. Just remember we love you even when it’s not said on the surface.

14. We hate to be stereotyped as a “one-size-fits-all” disability. Also, we hate when you think the only people we can be around are those with similar disabilities. Give us opportunities to stretch and figure out who and what works best for us.

15. Finally, no matter what, we all serve a purpose. Play to our strengths while always helping us with our weaknesses along the way. 

Today, 1 in 5 Americans have a disability. Be educated. Be aware. And please be understanding. As a society, we’ll be much better for it.

This blog originally appeared on KerryMagro.com.

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3 Responses for People Who Think My Son With Autism Shouldn’t Go Out

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When you read articles about autism on the Internet, sooner or later (likely sooner) you’ll come across some common opinions in the comments section. They go something like this:

“Why don’t you just keep your child at home?”

“Here’s an idea: Your husband could stay home with the kids while you go grocery shopping alone!”

“People are paying for a meal. They don’t need to be interrupted by your unruly child who can’t handle the restaurant.”

“If your kid doesn’t do well on airplanes, then don’t fly!”

“Hire a sitter and go to (fill in the blank with any public place) alone!”

It’s sad that this is such a widely held view toward children (and probably some adults) with autism. My husband and I hold an opposite view on going out and about with our children, one of whom is on the spectrum. Here’s why:

1. It’s good for him. My son is a curious and bright little boy. He enjoys being with us and we enjoy being with him. It would be incredibly unfair to him and his development to limit his life experience to school, the doctors offices and home. To keep him away from public experiences that are tough for him would also perpetuate a cycle of disability rather than ability. 

My son doesn’t do well in restaurants — the people, sitting, the smells and the noises are all a bit much for him. But if we were to simply cross that off the list of things we do with our son, he would never learn how to handle going to a restaurant. We aren’t taking him to swanky five-star restaurants and expecting him to sit quietly for a two-hour meal. But we do occasionally take him to a family-friendly diner when it isn’t too busy and hope for grace from the staff and other customers. We do take him to the local coffee shop and work on sitting at the table without getting up even if it only lasts five minutes.

Sitting at the dinner table at home isn’t good enough practice for sitting in a restaurant, just like gathering items from the cupboard isn’t practice for grocery shopping. The task itself typically isn’t the issue — it’s the environment. The only way for him to get used to being out in the world and overcome some of his anxiety is to get out in the world. It isn’t easy for him, but it’s good for him.

2. It’s good for us. The idea that our family should be held hostage in our home is absurd. Of course, there are days we’d like to go for an outing, but we recognize that it’s a terrible day for it (this could be true for either of our kids) so we stay in. But usually, we do things together whenever possible.

On the weekends, we enjoy family time and sometimes that looks a little messy, but it’s good for us to get out together. If we were to hire a sitter for our son every time we wanted to leave the house, it would feel to us that we were no longer treating him as a valued member of the family but as a nuisance. We love him and we love doing things with him. The only way for us to learn how to teach our son life skills and how to manage in different scenarios is through trial and error. One outing might be disastrous, but through it we learned how to be better prepared the next time.

This doesn’t downplay the enormous struggle it can be to do outings as a family. Sometimes I am tempted to say it isn’t worth it or it’s just too hard. But it’s good for our family to be stretched and challenged and to get out together.

3. It’s good for the general public. The fact that there are so many people who think our children should be kept out of the public eye is disturbing. It reminds me of a time not so long ago when you simply didn’t see people with special needs out in the community. Why? Because they were institutionalized. People who had so much to offer this world were hidden away because of fear, ignorance, apathy and a lack of compassion and resources.

Today we don’t do that because we know better. We know that children with autism grow up to be adults with autism. And we know now that they can be incredible contributions to society just like anyone else. We know now that they have much to offer and teach us.

It’s good for the public to get used to seeing people with differences out and about. It’s good for us to see a new way of learning and thinking and doing things. It’s good for us as a society to learn to live together in unity and to encourage each other in our unique gifts and passions. It’s good for us to help each other through times of trouble and to lean on one another for community and support.

And one of the ways we do that is by being together, in public, with all kinds of people of all kinds of abilities.

So that’s why we take our son to the grocery store, the library, the community pool, the park, the coffee shop, the family diner, Colonial Williamsburg, church, the basketball game and more (even if we only last a little while.) It’s good for him. It’s good for us. And it’s good for you.

P.S. Don’t get me wrong: Sometimes we do get a sitter and head out for some much needed kid-free outings.

P.P.S. What’s right for us isn’t necessarily what’s right for every autism family. But that’s for each family to decide, not the general public.

A version of this post originally appeared on LaurenCasper.com.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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The Right Way My Son With Autism Can Help Educate Your Children

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“I’m so glad you know how to behave in public,” you whisper to your child.

Only it’s not always a whisper. We hear you loud and clear. And even if we don’t hear your words, your disapproving glances convey the message.

Evan, my 9-year-old son, has autism. Until he has a meltdown, he doesn’t look any different than his typical developing peers. But then, he looks more like an out-of-control toddler than a third-grade school boy.

It’s the worst when parents use Evan’s meltdown as an opportunity to show their child how not to behave, or to reinforce their child’s exemplary behavior. While your intentions may be good, there’s a better, non-judgmental way to teach.

Instead of comparing behavior, ask your children why they think the other child is acting that way. Then, be open-minded. Maybe the child who’s having a tantrum just got hurt, he’s scared because he thought he lost his mom or any number of alternative explanations. While this may not be the reason for the child’s meltdown, at least you’re teaching your own children they shouldn’t be so quick to judge. Things are not always as they seem.

My son usually isn’t upset because I won’t let him have a cookie or because it’s time to leave the playground. It’s more likely he’s bothered by a sight, sound or smell that you or I barely notice. But to him, it’s an all-out assault on his nervous system.

Almost anything can set off a child with autism, from the sound of a fly buzzing to the smell of a banana. Some kids are bothered by the slightest change in routine. I know a girl who insists on always using a particular door to enter her school. If that door happens to be locked, she screams, cries and refuses to go through another door. Without knowing the whole story, a passerby can come to any number of incorrect conclusions.

If your child asks a question, answer it to the best of your ability. Your kids are curious and that’s a good thing. They aren’t judging. They don’t mean any harm. They are questioning something new. By avoiding their questions you’re actually showing them something is wrong. Instead, use this as an opportunity to educate your children. Often, a simple explanation will suffice.

And if can’t answer your children’s questions, it’s OK. We don’t expect you to have all the answers.

Even better, start a dialogue. You could say something like, “Hi, my name is Jen and this is my daughter Jessica. She just asked me about your son’s flapping.” By doing so, you are not asking a direct question, but instead starting a conversation and allowing the parent to respond in a way that is most comfortable for them. If you don’t want to approach them, you could say, “He was born that way, just like James was born with autism or Nathan was born with allergies.” Then you could add something your children can relate to, like, “I wonder if he likes to play with Legos, too.” This way, when your children meets someone with a disability or someone who looks different, they are less likely to be afraid.

So please, next time you see a child with “bad” behavior or physical differences, it’s OK to use him or her as a teaching tool. Just do it the right way.

young boy with glasses on the beach

A version of this post originally appeared on Special Ev

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9 Things Dads of Kids With Autism Want New Members of Their Group to Know

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I’d just finished talking to a group of parents at a local school about my experience raising a child with autism from babyhood to young adulthood. There was a lively Q&A session at the end with the mostly female audience. I noticed a burly man sitting toward the back. He didn’t look like he came with anyone. Our eyes connected several times during the Q&A, but he never raised his hand.

Just as the group was filing out and I was packing up to leave, the man approached me. “Can I ask you a question?” he asked. “My son is 4 and was just diagnosed with autism.” He paused, looked down at his feet, and then looked up again, his face screwed up in an effort to hold back tears. “Do you have any advice for me? How did your husband deal with it? I thought there would be more guys here…”

How my husband dealt with it was not a story that I thought would help this dad (in denial in the beginning, leaving me to do most of the heavy lifting, but now he is all in).

“I have a forum for parents on Facebook,” I said. “A lot of dads read it. Let me ask them.”

So here’s what I posted in the forum:

“Fathers of older children with autism: What is one piece of advice you would give to fathers of newly diagnosed children?”

I asked, and did I ever get insightful answers. Here’s a sampling of my favorites:

1. “Love and support your child in their dreams, interests and aspirations because they have them. Don’t ever be ashamed of them. Be proud when they slip their hand in yours as you enter a public place. Grow to love the unique way they think. And realize there are special talents inside of each one of them that will blossom if their dad cultivates it.” – Craig Curtis

2. “Man up. Be a dad, not just a father. Take your child out into the world, take them to a fenced-in playground every day when you get home from work for an hour.  Take your child to a science center, to a farmer’s market, to church, to football games. They are children and they model you. They do it differently, but they do it, so do things with them. Put their toys away when they go to sleep in an organized fashion. Stage them in social settings every night. Get time for yourself, and time for your marriage…

This was the first and best advice I got from my sons’ doctor: love your child. I have two with autism. They are doing great, both 15 years old. They are independent, playing sports, interested in friends, and just wonderful people.” – Don Sutton

3. “Accept your kids for who they are. Encourage them to be themselves; don’t force them to be someone they are not.” – Ron Junk

African American father and son hugging and laughing
Father and son hugging and laughing. Photo source: Thinkstock Images

4. “I have to keep reminding myself of the poem “Welcome to Holland.” I looked forward to baseball games and Cub Scouts. But instead, we do elevator rides and take tours of the bus barn. Things that my son is interested in. You have to change your expectations and just roll with it.” – Jason Wiederstein

5. “Love them the way any child deserves to be loved.” – Chip McInnis

6. “Go with your gut, it’s never wrong and mostly right. Don’t be afraid to cry, it’ll happen often and it helps. Stop asking “Why him?” and start asking “What can I do?” What’s right for other kids with autism isn’t necessarily right for mine. There are lots of people who want to help, and very few who know how to, so figure out who they are and accept their help. Whatever the unsolvable problem or behavior is today will be gone soon and replaced by another one.

“And… make alone time for you and your partner.” – Alex Harris

7. “The child you walked into the DX appointment with is the same one you walked out with.” A word does not change your love and commitment to that child. – John Horton

8. “Treat them like the others, with patience and understanding. Life will fill in the voids.” – Jim Odwyer

9. “Love them unconditionally. Allow them to grow. And try to keep up.” – Charles Hicks

A version of this post originally appeared on Laura Shumaker’s website.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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4 Tips for When Children With Autism ‘Shut Down’

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You’re out shopping with your child. It’s busy, so lots of people are walking past with shopping carts and baskets. They’re all wearing different varieties of clothing, textures and contrasting colors. Some of them have on deodorant or perfume. Some don’t, but should.

There’s bright packaging and tins on the shelves, different smells of bakery bread and doughnuts. People are discussing what to have for dinner, a baby screams and someone laughs loudly. Tinny music plays, machines beep and the 50 hertz drone of the freezers hum.

The overhead strip lighting blinks 60 beats a second.

Your child silently sinks to the floor and lies down.

For most parents, their first reaction is to try to get them up. The floor’s not clean. They’re embarrassed. People tut and make a big thing of going around you with their shopping carts.

What they don’t realize is that your child with autism is grounding.

With the overload of sensory invasion, the floor begins to tilt and the room starts to sway. They need proprioceptive feedback, something cool and solid to regulate themselves on. So they do what anyone would want to do when feeling like they just got off a roller coaster — they sink down.

It’s not a meltdown or a painful sensory overload. It’s a need to regain control — to breathe and feel something solid beneath their cheek and palms as the world and surrounding environment slows down. The feeling is best described as disorientation and loss of balance, and this “shut down” typically happens in five phases:

1. Sink.

2. Ground.

3. Regulate.

4. Recover.

5. Rise.

When this happens, what should you do? Here are some tips.

1. Sit down with your child.

Yes, it’s in the middle of the supermarket/street/bank, but pulling them onto their feet before they’re ready will cause a meltdown of epic proportions.

2. Firmly rub their back and offer low words of encouragement.

This will help your child know that you are there and they are safe.

3. Help them up, but slowly.

When they are ready, sit them up and then slowly help them up. It’s best to move slowly as they may be unsteady.

4. Find a quiet place.

They need to be somewhere quiet. If that means abandoning the shopping, then so be it.

When your child with autism lies down in the street, his or she is not being naughty or stubborn. As someone with autism, I can say from my perspective it’s like being on moving floor and desperately trying to stay upright. Grounding is a way to regain that control.

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