To the Special Needs Parents Who Wonder 'What If...'

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As parents, we spend so much time wondering “What if I had…?” when it comes to our children. For example, what if I had ordered more speech therapy for my child? What if I had doubled up on their play therapy hours? What if I had enrolled them in that school for children who have autism instead of public school? What if I had spent more time interacting with them instead of watching TV/reading/sleeping? What if I had taken them to a different doctor? What if I had seen it sooner?

You can spend the rest of your life asking “what if I had” questions and, believe me, you will never find the answers. It’s impossible to know, unless you figure out how to rewind time. (And if you do, please let me know.)

So instead, I recommend an alternative to asking “what if I had” questions. Try asking “what if I hadn’t.” Anyone who knows me and will tell you I’m typically a glass-half-empty type of person. So trust me, it’s difficult for me to follow this exercise, too. But after all, we parents work so hard for our kids every single day and will continue to do so for the rest of our lives. This goes double for single parents, and quadruple (or more) for parents with children on the autism spectrum (or other disabilities). So give yourself a break for five minutes a day and ask yourself, “What if I hadn’t?”

What if I hadn’t recognized that something was amiss with my child? What if I hadn’t started asking questions and doing research? What if I hadn’t had them evaluated? What if I hadn’t taken them to therapy last week? Or the week before that? What if I hadn’t read that article on that intervention that offered a breakthrough for my child?

Sometimes we get so focused on what still needs to be done that we forget what we’ve already done. Of course it’s easy to get discouraged when you compare certain aspects of your child’s development to a neurotypical child. But it’s counterproductive to compare even two neurotypical children. Instead, compare your child to your child one year ago. Or two years ago. Chances are you’ve seen great progress.

So instead of asking yourself, “What if I had…?” ask yourself, “What if I hadn’t…?” and give yourself a pat on the back. Your child smiles more because of you.

kari sherwood the mighty

A version of this post originally appeared on Mommy First, Rockstar Second.

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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How a Boy With Autism Launched His Own Nonprofit With the Help of Dragons

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Via Lisa Stagliano/Santino’s Dragon Drawings

Santino Stagliano has loved drawing dragons from the age of 3 — two years before his autism diagnosis.

He didn’t speak in full sentences until he was 4 and a half years old, but he knew how to express his emotions through art.

“The reason he likes dragons is because they’re the only things that can breathe fire and fly,” his mom, Lisa Stagliano, told The Mighty. “They’re different, like him.”

Santino, now 10, draws dragons based on his emotions and events. Sad dragons may have tears in their eyes; red dragons depict anger. And the first time he said “I love you” was when he gave his mom a drawing of a mother and baby dragon.

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Via Lisa Stagliano/Facebook

This past April, when his mom posted a photo of one of his t-shirt designs to her Facebook page, in just one night, nine people requested to buy one.

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Via Lisa Stagliano/Facebook

The Stagliano family has since started a nonprofit and website called “Santino’s Dragon Drawings” to sell Santino’s shirts online.

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Via Lisa Stagliano/Santino’s Dragon Drawings

“It’s like a light switch went off in my son’s head,” Lisa Stagliano said. “We’ve seen nothing but miracles since this happened.”

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Via Lisa Stagliano/Santino’s Dragon Drawings

So far, Santino has hand drawn designs for more than 650 shirts. He donates half of his sales to The Center for Autism.

Check out some more of Stagliano’s drawings below and visit his Facebook page for more information.

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Via Lisa Stagliano/Santino’s Dragon Drawings
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Via Lisa Stagliano/Santino’s Dragon Drawings
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Via Lisa Stagliano/Santino’s Dragon Drawings
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Via Lisa Stagliano/Santino’s Dragon Drawings
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The First Time My Son With Autism Got a Birthday Invite I Didn't Have to Decline

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Dear (Super Cool) Mom,

You don’t know me and I don’t know you, but my son, Timothy, sometimes sits beside your son at school.

Timothy has severe autism spectrum disorder. He is also a 7-year-old little boy who loves and plays with all of his heart. He needs a lot of extra help at school and sometimes seems just plain oblivious to what’s happening right underneath his nose.

He wants friends but sometimes doesn’t know how to make them.

He wants to play but sometimes doesn’t know how to ask.

He wants to be included but sometimes doesn’t know how.

We parents of children with special needs know only too well the hurt our kids feel when they are left out of the social gatherings.

Organized sports, play dates, sleepovers and yes, the dreaded birthday parties. 

I can say whole-heartedly that my son has not attended a single one. We have received countless invitations in the past few years, but mostly by kids who mercilessly invite the entire class. Don’t get me wrong, I am grateful. 

But I wonder if the parents know what would happen if I brought Timothy? The interruptions, the meltdowns. How I would hate to take the spotlight from the birthday child.

So we politely decline. Every single one.

Until your invitation arrived in the mail with a special note. It read:

“Carter sat beside Timothy at birthday invite with special note from mom

school and he always talks about him. I really hope he can come. We are renting a bounce castle that we can attach a small bounce slide at the bottom. We will also have water balloon’s and water guns. Maybe Timothy can come earlier in the day if it would be too much with the whole class. Let me know how we can make it work.”

You wrote exactly what I needed to see that day and didn’t even know it. 

Because of your son he is included.

Because of your son he feels wanted.

Because of your son he has a voice.

And I want you to know that because of you I can get through another day.

Because of you I can get through another appointment.

Because of you I can take more stares and more questions.

Because of you I have hope for Timothy’s future.

I just wanted to tell you what a fantastic job you are doing with your son.

This mom will be RSVPing a hell yes for the first time ever. And I can’t wait.

Sincerely,

Timothy’s very grateful Mom

A version of this post originally appeared on The Book of Timothy.

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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My Greatest Fear as an Autism Parent, and the 2 Words That Give Me Comfort

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This is blog I’ve dreaded writing… the one I’ve avoided for a while.

Maybe it’s because I’m scared of the reaction of other parents. Ever since I started blogging, I’ve opened myself up for the possibility of criticism. But I told myself from the beginning that this is our story, our journey. And that as hard as it can be to open yourself up to the possibility of ridicule (even within my own community) that I would be 100 percent raw, 100 percent open. About all of it. Maybe the truth is, I’ve been scared to write this particular blog because of the place it takes me to — the place I so desperately try to avoid thinking about. The darkest corner. My deepest fears. The thing that taunts me at night. 

My son is 7, going on 8 years old. He’s big for his age, about 90 pounds to be exact. He’s classified as nonverbal and uses an iPad for the majority of his communication. He’s also classified as severely autistic. He can go into intense meltdowns and at times, be impossible to calm down, and yes, he can also be aggressive. Let me be clear, I’m not scared of my son. Not in the least. What I am scared of is, what if the day comes when I am scared of him?

Applied behavior analysis (ABA), occupational therapy (OT), speech therapy, pills, etc. — we’ve almost tried it all. Friends message me with potions, lotions, news articles and any other latest and greatest thing believed to help “cure” autism. Truthfully, just between you and me, I don’t need anymore suggestions right now. Yes, I know, they mean well. But the truth is, I need a miracle. 

Quite some time ago, I accepted the fact that my son most likely will need lifelong care and that I would be his caregiver. I accepted the fact that as a single mom, there’s a possibility I may have to travel this road alone. What I haven’t been able to bring myself to think about is the possibility that me taking care of him won’t be an option. I can’t bear to think about the likelihood that one day he may need care I will not be able to provide. In the event we’re not able to get his meltdowns under control… what then?

There it is. The monster in the dark. The nightmare that torments me at night. I can’t bear the thought of a day where I don’t wake him up and he darts to my bedroom, climbs under my blankets and for that brief moment, lets me cuddle him. Or at night when I tuck him in and we go through our routine when I tell him goodnight and how much I love him. This is one of the few times I get to hear his sweet voice when he attempts to mimic what I’m saying. Yes, it’s echolalia, but I don’t care. I hear his voice, and for just a few minutes at night, we have a “conversation.” It’s my absolute favorite time of the day. I live for that moment. I can’t bear the thought of one day not having that.

mother looking at her son

I find myself praying more and more these days. I pray for a miracle. Not for him to be “cured” of autism. I pray for relief from the meltdowns, not just for me but for him too. I pray the day won’t come when I have to face my darkest fear. I pray for a lifetime of “good mornings” and “good nights” with my son. But I’ve also found myself learning to pray that, should I not be granted that “miracle,” I will find the strength to handle the alternative. 

For now, I enjoy and am thankful for every day I have with my son. We continue to work hard with therapy, and I continue to pray for our miracle. I read a quote recently: “I don’t just believe in miracles, I rely on them.” Sometimes, the words “me too” are the only thing someone really needs to hear to know they’re not alone. So while I’m not (at this moment) looking for any more suggestions or links or 1-800-get-out-your-credit-card “cures,” what I really could use right now is a simple “me too.”

Is there anybody else out there “relying” on a miracle? 

Because I know I am.

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When My Daughter With Autism Sensed a Stranger Needed a Hug

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I don’t like doctors’ waiting rooms.

They’re like silent torture chambers for an anxious mother of a 6-year-old, who can change from a little sweetheart to a little banshee at any second, screaming the roof off and attracting looks of confusion, pity and annoyance.

As we waited for the doctor, Sophia jumped out of her seat next to me and sat next to a woman on the opposite side of the room. The woman said, “Hello,” and I watched as her eyes filled with tears as Sophia smiled and snuggled into her arm. This was most out of character for my normally anti-social daughter, but Sophia obviously liked her.

Sophia happily sat there babbling away in her own language as she snuggled into the woman’s arm. I explained to her that Sophia is nonverbal. She was such a kind-natured woman that I felt comfortable telling her about Sophia’s autism.

I stumbled onto my words and said, “I can’t say any more or I might lose it.”

“Well, I would offer to give you a hug, but that might set you off as well,” she replied. And we laughed. It felt good to laugh.

As the minutes ticked by, I asked the woman if she had been waiting long to see the doctor. She explained she was waiting for her husband who was already with a doctor, having a cancerous growth removed from his leg. After 25 years of marriage and excellent health, her husband had recently been diagnosed with advanced prostate cancer, which was spreading through his body and was now terminal.

She went on to explain how they were forced to sell their beachside home that they had painstakingly renovated over the years, since her husband didn’t like the idea of her being in a big house on her own after he was gone. They had now moved to a retirement village that overlooked a lake, which she said was nice but not the same.

Suddenly, Sophia’s autism didn’t seem like that big of a deal after all.

I offered to give her a hug, but she said it would “set her off” so we just sat there sharing stories while Sophia continued to nestle into her arm like a protective guard dog. My sweet, little, intuitive girl.

Eventually, the doctor was ready to see us. I didn’t know what to say to a woman with such palpable pain and grief. Regrettably, all I managed was, “See you, all the best.”

Ugh!

After our doctor’s appointment, I went back to the waiting room to find her, but she had gone. I had missed my chance to say something a little more thoughtful.

By chance, as we were waiting for Sophia’s prescription, the woman (I never did ask her name) reappeared. And with that, she reached out for a hug, and I hugged her back.

“Take care.”

“You too.”

And then she was gone. It was a brief but meaningful exchange, and I’ll remember it for the rest of my days. We were just two woman who shared a hug, our stories and space in time together in the doctors’ waiting room, brought together by fate and a little girl with autism who sensed a stranger in need of a hug.

Rebekah Corlett

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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The Comment I Dread Hearing as a Parent of Someone With Autism

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If you’re a parent of a child with autism, you might have had this said to you in many contexts and on many occasions: “Normal kids do that.” You may feel yourself tensing up and may have to work to keep calm. People say this for many reasons, and often think it’s a comfort. But the truth is, it’s not, and for a number of reasons.

Here are seven reasons why this statement isn’t helpful:

1. What is normal, anyway? 

First of all, I don’t like the word “normal” because it implies that people can be described as “normal.” I feel each person is unique and “normal” doesn’t exist. I’m uncomfortable with defining a person’s worth by his or her ability to keep within a narrow definition of what’s expected.

My son, Alex, always finds it strange as an adult with autism when people use the word “normal” as a compliment. They may say things like, “I didn’t know you were autistic, I thought you were ‘normal.’” However, what does normal really mean, who is defining it and is there really such a thing as normal when applied to a human being?

2. It’s not the truth.

Yes, maybe some “normal children” are fussy eaters. But that’s not the same as a child who can’t cope with the sensory input of different textures, or even the smallest change.

3. It minimizes our journey. 

This statement makes you feel like the person making the comment thinks you and your child are frauds. If the person thinks your child’s behavior and development are like “normal” children’s, it minimizes what may be one of the toughest times in your life.

4. It’s not a compliment.

Although individuals with autism process the world in a different way, it doesn’t mean they do everything differently. They must get tired of being told they “seem normal,” as though this is the greatest compliment in the world.

5. It can be used to deny help.

This is often used to deny children the support they need in school. Sadly, it may also come with the suggestion that the child with autism is just naughty.

6. It undermines the distinctions.

As I said, I don’t like the term “normal,” but sometimes the differences in behaviors that would lead to a diagnosis are a matter of degrees. For example, there’s a difference between tapping your foot and rocking back and forward for hours. They’re both examples of stimming, but one is more pronounced than the other.

For example, statements like, “Normal kids can be shy. He/she will grow out of it.” Yes, if it’s just shyness, a child might grow out of it. But if what’s seen as shy behavior is caused by autism, that’s different. This child lacks social skills and may struggle to read body language or give eye contact. It’s not the same as shyness, even though it may look like shyness to someone who doesn’t understand.

7. It’s sometimes based on misinformation.

“Lots of normal kids don’t speak a lot until they’re 5.” Yes, someone actually told me this when Alex was younger and my inner response was, “Since when?”

I wrote this because I want people to think about the way they speak to parents who have children with special needs. Small, thoughtless comments can make someone feel isolated, misunderstood and maybe even judged.

Alex was diagnosed with classic autism at the age of 4. At the time of Alex’s diagnosis, I felt as though my world had fallen apart. I was going through a grieving process. I knew Alex wasn’t like other children, and thoughtless comments left me feeling the loss even more.

Now, he speaks publicly about autism and has even written a book about his life. So although Alex may not be “like other kids,” he is a truly special person who has touched many lives.

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A version of this post originally appeared on Alex Lowery’s website.

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.

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