When I Asked My Husband 'Why Did God Give Us Such A Challenging Kid?'

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I collapsed onto the couch at the end of another long day. Both kids were finally in bed, but Junior was still making a vocal protest about having to sleep, as he does every night.

“Why did God give us such a challenging kid?” I asked my husband. I thought back on that day of another meltdown in therapy, a screaming fit in the car, and an emotionally draining afternoon trying to reason with an overtired 3-year-old that consistently refuses to nap.

“What do you mean?” he responded, though still engrossed in ESPN.

“My friends all have easy kids. They sleep, they understand the word “no,” and for heavens sakes, they go to the grocery store and actually hold onto the cart!”

He must have sensed my question held an underlying insecurity, because he turned to face me as he considered a response.

“Why do you assume easy means good?” he asked thoughtfully.

Of course easy means good, I thought. Easy means sleeping more than four hours at a time. It means going on an airplane without stressing for weeks he’s going to have a meltdown 10,000 feet in the air. It means going to the park and playing with friends instead of going to therapy again. It means never having to explain why your child is different.

But then, suddenly, something in my brain clicked. Easy might be good, but that doesn’t mean challenging is bad. No, challenging is good in it’s own special way…just like Junior.

When he wakes up in the morning and says “ears!” because he wants his cochlear implants on, that’s good. He has had to work hard for every sound he hears — hundreds of hours of appointments and therapies in the last two years. But the pride I see when he completes a listening task is better than good. It’s a miracle.

When he sits in a chair and plays with Play-Doh instead of throws it, that’s good. Yes, it took 3 months of OT to get him to sit still for five minutes, but it was worth it.

When he goes up to his sister and hugs her instead of hits her, that’s good. It only took 327 times of saying “we don’t hit” before he finally got it (this time, anyway). But it’s still progress.

If I’ve learned anything in the last 3 years, it’s that the harder you work for something, the more obstacles you face, and the more sacrifices you make, the more you appreciate it.

My life with Junior isn’t ever going to be easy. But my perspective about his special needs has shifted. I appreciate the little milestones more than any typical parent is capable of. I don’t take those baby steps of growth for granted. I know how much hard work, sacrifice, tears, and sleepless nights have gone into every ounce of progress, and it means everything. And, at the end of the day, I don’t want an “easy” kid, I just want Junior.

young boy in red shirt

A version of this post originally appeared on Save Money, Live Joyfully

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The Beautiful Ways My Hopes Changed for My Daughter With Nonverbal Autism

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When Zoey was diagnosed with autism in August 2014, we were told she was nonverbal and not to give up hope.

I hang onto hope. I cling to hope. I wear hope. I sleep and dream hope. I breathe it in every day and never release it. It’s a part of me.

My child is a part of me, too. She is a piece of my heart. She makes me want to be healthy and fight for anything and everything she needs. She’s made me into someone I never thought, or even dreamt, I could be.

I knew nothing about autism! I didn’t know the different severities. I didn’t know that my child may never talk. I didn’t know that she wouldn’t be able to communicate at all. I didn’t know!

But I did know to never lose hope, to not take the small things for granted and to love this child unconditionally with all of my heart. That I know!

Of course, I wanted to hear her say “Mama,” and hug me. Yes, I was sad. But I put the sadness away and focused on what she could do, and she’s made lots of progress this past year with early intervention. She has opened up to me, and we now have a bond we didn’t have before. I get hugs, she sits with me and lets me rub her face. She shows me love without words.

The funny thing about hope is sometimes you don’t really know what you’re hoping for. I had hope that she would speak so she could say “Mama,” “I love you,” or at least tell me what she wanted or needed. But my hopes changed. I hoped for her to be happy, feel less frustrated and feel and know love, and those hopes have come true!

Hope just floats around like a bubble — airy and beautiful! And then, without you asking, praying or dreaming for it, it just happens! I just make sure to capture that bubble before it pops, and wait for the next one.

Here’s a video of my daughter saying, “Mama,” for the first time on Mother’s Day.

Follow this journey on Melissa’s Facebook page.

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

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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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