Some people get tired of hearing about how much I love my husband.

I don’t care.

Some people get tired of our mushiness. 

I don’t care.

Some people get tired of our public proclamations of love.

I don’t care.

Why? Well… as a mom of a child with some special stuff going on, there are times you feel isolated.

As parents, we do what we have to do. I’ll admit, though, it’s a bit easier with someone by your side. My husband is just that. After years of holding it in, I nearly burst into a thousand pieces two summers ago. He held me; I cried. I couldn’t say what I needed so badly to say, what I’d wanted to say for years. He said, “It’s OK, say it. You know I love you no matter what you have to say. Let it go… go ahead.”

It came flying out. I was so angry. I was so thankful that I had my son, Tucker – but so angry that this is his life. So angry that he has to deal with this every day. I was so mad at God for doing this to my child. Tucker would never be able to know what it’s like to have your brain just work. This will always be a battle for him. Always. Every. Single. Day. And it feels horrible to say all of that. It feels horrible to say you wish your child was… um… normal.

And then I wanted to take it all back. Because I didn’t mean it. But, I did. I meant every single word. But I love him – and if I truly love him – why would I want him to be different?

That’s true life, folks. Ugly and Beautiful.

My husband held me as I sobbed. He kissed my forehead and said, “It’s about time – you don’t have to hold this in. You don’t have to do this alone. When I married you a month ago I promised you that you would never be alone. Ever. For any part of life. This is included. You’ve been holding this in for 10 years and never felt loved enough to say any of it to anyone else. Say it all to me. Being alone isn’t just physical, I meant emotional. You do not have to deal with your feelings alone, lay them on me. I want them.”

In that moment, I knew I found my support, and that’s the very reason I don’t care if people are disgusted by our love.

Find your someone. Maybe it’s…

your partner

your husband

your best friend

your wife

your mother

your aunt

your uncle

Find yours. The person who you completely trust, the person you can say anything to, the person who won’t judge you, or fix it for you, or give you some piece of advice that doesn’t really make a difference. That person. Find them, and then – take care of them – because your soul will never feel alone again.

For the rest of you? It’s pretty simple.

Be someone’s someone.

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Read more from this journey on 366 Days of Autism.

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Belle loves music.

Some of the 4-year-old’s favorites artists are One Direction, Fall Out Boy and Taylor Swift, according to a note her older sister wrote on Tumblr. Belle, who has Down syndrome, has difficulty speaking clearly. But singing with her sister has given her the opportunity to practice her pronunciation more.

She’s getting better every single day,” Belle’s sister wrote on Tumblr. “Something as simple as singing [Taylor Swift] with me in the car or in the grocery store has helped her to learn new words and grow in the clarity of her speech.”

Check out Belle’s rendition of the T. Swift’s “Blank Space” in the adorable video below:

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Dear Laurie, Steve and Tara,

We met on Valentine’s Day last year. You may not remember me, but I will never forget you. It was a Friday evening, and our paths crossed in Boston. I don’t know what I looked like on the outside, but I know how I felt on the inside. I was standing still with my hands over my face in a crowded airport contemplating my next move.

My son Sean was in his wheelchair next to me. I felt defeated, exhausted, frustrated and desperate. I don’t even know if I was crying, but I know I was shaking. No one seemed to care — that is, until Laurie saw me. All I remember is that I looked up and she was there. I don’t know what I said, but Laurie asked me to not move and told me she would be right back with help.

The next thing I remember is meeting Steve and Tara. I explained to the three of you that all I wanted to do was gain access to the family restroom so I could take care of my son. He was 13 years old at the time — too old to go into the female restroom with me. You assured me you would help me. You showed me you cared.

You listened to my story. I explained that Sean and I traveled with my father from Washington Dulles International Airpot in Dulles, Virginia, to Logan International Airport in Boston because Sean had a doctor appointment at Massachusetts General Hospital. We flew up and back in the same day, which makes for a long day for anyone. It’s an even longer day when you have multiple disabilities and require some accommodations most people take for granted.

Once we arrived at our departure gate, we learned that our flight was delayed. I scouted out all the restrooms I could find in the general area. There were several conveniently located men’s and women’s restrooms, but I couldn’t find a single family restroom. Sean stayed with my dad while I expanded my search. I got as far as two TSA agents, who were blocking doors to make sure if you left, you didn’t return. They begrudgingly gave me directions to a restroom within the secured area. I walked all the way back to the gate to get Sean and let my dad know what I was doing. He stayed with our belongings. I pushed Sean in his wheelchair all the way to this one inconveniently located family restroom. When we got there, an employee at a nearby retail store told me it had been locked for hours. I checked my flight’s status at the ticket counter and also asked the staff for help. A ticket agent made a phone call and then told me someone would meet me there with a key. I walked all the way back again, and no one ever arrived.

That’s when I headed back to the gate. I got halfway there and just stopped. I didn’t want to give up because it wasn’t fair to Sean. He shouldn’t have to sit in a wet diaper on an airplane simply because accommodations were not made for people who have disabilities.

One of you called for assistance, and all three of you walked with Sean and me back to the restroom. No one had ever showed up to open the door. You were willing to do just about anything. Most important, you showed Sean compassion and treated him with respect and dignity. Without hesitation, you all jumped into action. First you closed the women’s bathroom and allowed me to go in there alone with Sean. Laurie and Tara went into the bathroom while Steve stayed with me, and he didn’t allow anyone else in there. Once the restroom was cleared out, you told me to take as much time as I needed and that you would all wait outside.

At this point, I guess I appeared quite distraught because Tara asked me if I felt comfortable having her help me in the restroom. Normally, I would have said that was not necessary. This time I said yes. She came in and totally distracted Sean with water and play while I changed him. Then she washed his hands. She went so far beyond the call of duty, that I’m not even sure what you’d call it. All three of you then asked what you could do next. I told you I was fine and I couldn’t possibly express how much your help meant to me. The three of you truly cared about Sean and me.

My mind shifted to thoughts of my dad sitting at the gate wondering what happened to Sean and me.  I pulled out my phone and saw how many times he’d tried to reach me. You offered to page him. I immediately said “no” to that because I didn’t need to put my dad in full blown panic mode. Since I also didn’t know the status of my flight, I wanted to get back to the gate quickly.  The three of you walked Sean and me all the way back to my dad at the gate. Then you offered to take care of Sean while my dad and I ate dinner. I explained that I needed to feed Sean and all was well. I asked if we could store our belongings behind the ticket counter, but Tara insisted on staying with them while we had dinner. Tara also gave us a voucher for dinner, courtesy of JetBlue. This incident had absolutely nothing to do with JetBlue, yet the three of you took full responsibility. When we got back to the gate after eating, passengers had started to board. JetBlue insisted on stopping everything until my dad, Sean and I were on board. Tara escorted us all the way to our seats.

IMG_0517 The most frustrating experience turned into the most positive one. All three of you made a lasting impression on me, and I will forever be grateful. But it all started with you, Laurie. You could have easily walked past me like everyone else did, but you chose to stop. I would have never met Steve or Tara if it hadn’t been for you. I still wonder if I caused you, as part of the inflight crew, to miss a flight. If you were concerned about that happening, you never let me know. Tara asked my dad for his contact information, and she’s reached out to us a few times since then.

I told Tara that Sean’s next appointment was scheduled in September, and she followed up with me to let me know she wouldn’t be working that day, but she made arrangements for some else to assist us if needed. My dad was looking forward to seeing you all again, and knowing Dad, he’d do something extraordinary to express his gratitude. But our plans changed. My husband traveled with Sean and me because my dad was too sick to travel. Tara knows this, but she doesn’t know that my dad lost his short battle with cancer in December. In honor of my dad, I want to make sure you and your colleagues know what a difference you made in my life. I will remember Valentines Day 2014 forever. I was surrounded by love.

With heartfelt gratitude,

Ann Marie

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For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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Our son, Adam, was born on August 29, 2003, after a violently thunderous night in Erlangen in the south of Germany.

We were there for my husband’s post-graduate study and didn’t yet know much German or many people in our local community. I’d been a neonatal intensive care nurse, so I knew how to handle babies and also expected an uncomplicated birth for ourselves.

We had anything but! Just three days after his three-weeks-early home birth, our son became ill with an infection from his umbilical cord. He was in the hospital for 13 days and nearly didn’t make it. I was with him night and day, and on one jaunt to yet another X-ray, I noticed the words in his chart: “Verdacht Trisomy 21” (Suspected Trisomy 21).

What? This was one thing I certainly hadn’t seen coming.

Suddenly our world changed, and the crisis we were going through took on a whole new meaning. I knew what this meant, though I’d only ever seen one baby born with Down syndrome during my five years in London. What were we in for now?

Well, bad news upon bad news it seemed. Doctors had only gloomy predictions for us, such as, “You know he’ll never go to normal school, don’t you?” They all looked at Adam and me with pity in their eyes, if they even looked at us at all. I received no support, no help, no communication of any encouraging kind. Until Adam was referred to a physiotherapist in Erlangen named Heike Holz.

On our first visit to Heike, I remember her greeting us kindly. I remember how calm she seemed. She wasn’t staring or full of pity. She took us into a room, and I remember her asking me to put Adam on his back on the table. Most of the conversation was in German, which I was finally just reaching a passable level in because of the stress of Adam’s birth. But I clearly remember taking in that she encouraged me. She said he was doing well, bringing his arms up to the midpoint, and so on.

He was doing well.

She clearly said those words, and shock waves roared through my heart when I absorbed them as the first positive words anyone had yet said about Adam. He could do well! He might yet do well in life! Suddenly, nothing was as gloomy as it had been just before that appointment.

I believe the moment our physiotherapist gave me positive words to associate with the diagnosis, the syndrome, the problem that was my son, that moment was the first true light in a dark tunnel. And we’ve kept on, we’ve come so far and Adam himself is a light to many people now. He’s who he’s supposed to be, and I’m so grateful to Heike for recognizing it and voicing it to a suffering mother all those years ago. She gave me strength and hope, she was a balm to my soul after so much heartache from a medical and social system that just didn’t accept our difference.

Adam can do a lot now, Heike. I’m glad you could see it too.

Thank you.

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For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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A huge portion of the American population has special needs. According to the Centers for Disease Control and Prevention (CDC), 1 in 5 Americans has a disability or functional impairment (visual, cerebral palsy, muscular dystrophy, Alzheimer’s, ADHD and/or autism) and 1 in 68 children can be said to be on the autism spectrum.

The potential for adaptive clothing — which can be introduced for those with an inability to dress themselves properly, comfortably or independently — is massive for this population that continues to be underserved when it comes to practical and thoughtful fashion .

Lauren Thierry and her team at Independence Day Wearable Tech have successfully developed a clothing line for teenagers that redefines the term “smart casual.” The clothing is consciously designed without tags, seams, zippers, laces and buttons in breathable performance wear fabrics. It’s also double-sided and equally meted at the crotch, seat and/or neckline, eliminating the opportunity for these kids to put anything on backwards or inside out. Most thought provoking, however, is the hidden compartment sewn into the clothing, which allows for optional GPS tracking and other monitoring devices. Check out the video below, after Thierry’s interview, to see the wearable tech in action. 

You’re the mother of a teenage son living with autism and  have spent numerous years advocating and raising awareness for the community, including directing/producing the documentary “Autism Every Day” but was there a particular moment when the idea for ID was born? 

Thierry: Yes. Liam was born in 1997. Back in those ancient days, pediatricians were not that wild about looking you in the eye and saying, “Hey, Mom, your kid has a problem.” So we went on a bit of a journey. We were first-time parents, so we didn’t really know what was normal and what wasn’t. One of the things Liam was not doing was making sustained eye contact, and that was a little bit of a red flag. Anyway, by the time he was 22 months, he was diagnosed with autism.

And what sparked the idea for the clothing?

Lauren: I love that question, and I love answering it. A lot of people ask me, “Why do your clothes start for tweens, what about little kids?” Here’s why. In my experience, and in the experience of hundreds of other mothers I’ve spoken to, either anecdotally or with focus groups, a normal kid takes an interest in dressing themselves around 3, 4 or 5 years of age. To market to moms whose kids are 3, 4 and 5, well, that’s just going to be ridiculous. Those moms are living with the dream that with just a couple more years of occupational therapy, my kid is going to be able to dress himself no problem. 

Then your kid hits 5, 6 and, all of a sudden, moms with special needs kids start saying, “You know what? It’s really OK if he doesn’t tie his shoelaces, there are slip-ons and Velcro, so let’s tell the occupational therapist to stop trying to teach him how to tie his shoes.” 

Then they hit 8, 9. By then you’ve been given the protocol of “Do not help your son or daughter get dressed, this will only create a dependency, you must step away and let him or her make those mistakes.” That means mom gets up at 5 o’clock in the morning, because she knows it’s going to be at least a 30-minute ordeal every single day of his life. 

When he gets to about age 10 or 11, this feeling kind of comes over a lot of moms, “You know what, he’s probably either never going to, or it will still become enormously difficult for him to tell front from back or to get it on quickly.” There is a bus waiting in the driveway every morning. In my case, it’s at 7:25 and my kid is still standing around in his underwear. If you don’t have kids, you don’t know this, but if your kid misses the bus that day, there goes your day.  If that happens every single day, you are losing moments of your day. We’re giving these mothers back 30, 40, 50 minutes of every day by saying these clothes are foolproof.

There was one crystallizing moment, though. Liam came out of the men’s room at a Mets game with his jeans down around his thighs. He was 12. I was mortified. I just said “That’s it, there has to be a better way.”

That must have been pretty traumatizing for him. 

Lauren: Yes, it was traumatizing. It just crystallized everything. They don’t allow women in the men’s room. I let him go in there by himself, standing right outside the door and that’s how he walked out. So, it’s the cliché — necessity is the mother of invention.

There’s also the sensory issues that some of these children have. It must make it difficult in terms of the rubbing or the noises or the scratching of the clothing.

Lauren: Completely. If you don’t have sensory issues, it’s hard to imagine a child absolutely feeling imprisoned by their clothing, whether it’s a toe seam, a tag in the back of a shirt or certain fabrics that are just not comfortable. 

There are a lot of behaviors that people look at with people with autism. I have strong anecdotal evidence of seeing those behaviors disappear when the clothes they are wearing are comfortable.

Can you tell us where the idea of putting the GPS devices on the clothing came from?

Lauren: A year and a half ago a big study was released about wandering, which is also called “elopement.” I read the study and said, “Well, why can’t we just GPS the kids?” So, I started asking around and I was getting a lot of resistance. People were saying “That’s so Big Brother, ya know, that’s horrible.” And I said, “If your child were missing, Big Brother would be the least of your problems.”

You are working with Empower GPS systems. How exactly does it work? Is it something you download to your smartphone?

Lauren: It is. I have an app on my phone. Anytime I want to know where my kid is, I whip out my cellphone, I hit the app, and I know exactly where he is in under four seconds. The unit in the clothes is about the size of a domino.

How are you able to offer the GPS devices for free on your website?

Lauren: I got really passionate and I got really tough. I said to Michael Christie, who’s the president of global tracking systems [Phoenix 5], “We gotta give these GPS devices away if only just to get them into the hands of the parents.” A lot of these people may not be technologically savvy or they may be in denial that their kids need them. I said, “Let’s make it easy, let’s give the device away for free, and then charge the monthly subscription rate, but let’s give them the device.” I’m a big believer that if I can handle that device, if I can have it in my hand and see it and see the little compartment that it goes into in the clothes, then you are going to see it is not that hard.

In overall terms, are you finding that the pushback or this whole “Big Brother” monitoring thing has gotten easier?

Lauren: Oh, it’s completely disappeared. I was speaking at a conference about six months ago and that question came up and I finally just said, “The technology is out there and the genie is not going back in the bottle.” Let’s put technology in the hands of good, decent hardworking parents who just want to know where their kid is. Let’s save a kid’s life. 

Back to your clothing. Do you remember the first time it was worn?

Lauren: The first test where it was worn was on my own son. Have you had a chance to see the video? [Embedded below] That was day one. I really wanted to document the real thing. That was day one right before we launched in April of 2014. That is him getting dressed and walking out to get on the school bus. 

Are you able to tell us how that made him feel?

Lauren: For kids that have more verbal skills than my son, I think it’s got to instill a sense of dignity in them. Liam got dressed that morning in those clothes and did not have one single temper tantrum. I think a lot of the time these kids have temper tantrums because they can’t verbalize why they are frustrated. He didn’t have a single one. Their dignity is at stake here. 

Liam has two younger brothers, 12-year-old twin boys who are — ya know, they are just badass typical 12-year-olds. They get dressed in 30 seconds and they’re on the bus a minute later. I designed the clothes as much for them as I did for Liam. I didn’t want Liam’s siblings to be embarrassed by him. There were too many times where I had no choice but to dress Liam in a baggy pair of sweats and a monochrome t-shirt just because it was easy. And because, if he got the shirt on inside out or backwards, you probably couldn’t really tell. And there would be Liam walking down the street with his nicely turned out brothers. And they would say, “Mom, Liam looks like a homeless person.” I realized it was a whole family issue. If Liam can blend in and look like everybody else, isn’t that better for the whole family?

How was it for you, seeing him getting dressed by himself?

Lauren: You just have no idea. I mean, 12 years of getting up at 5 a.m., bracing myself for the dressing portion of the day, not having me turn to my other kids and say, “Don’t bother me now, I’m trying to make Liam get dressed.” How do you think they felt for their entire lives, my saying “Get your own cereal.” All of a sudden, I had 45 minutes, and I could say, “Hey, you’ve got tennis today… Great! You’ve got lacrosse practice? I’ll drive you. You know, let’s eat Cheerios together.” What a difference in our entire quality of life. If your kids are happy, you’re happy. All of a sudden, I could be a human being. 

Are you able to do any sort of follow-ups on others that have worn ID clothing. 

Lauren: I’ve actually interviewed families where we literally see the kid get dressed in the clothes and you see the mom responding and the whole bit. Yes, the response has been really positive, really really sweet.

Last but not least, is there something currently impossible that you would love to make NOT impossible?

Lauren: On a personal note, it seems to be almost impossible for my son Liam to tell me where it hurts. If you’re a mother, that’s one of those big things. I would wish that it would be possible for him to be able to tell me. 

On a much more global level, what seems to be impossible right now is that it’s impossible for our kids to get good group living arrangements, because a lot of the states have put a moratorium on group homes. So, my son has now just turned seventeen and a bunch of us are scrambling to find an answer. Right now, we’re finding that it is impossible for us to find a place for our kids to go once they hit 21. It’s what I stay awake at 3 a.m. worrying about every night. I would like for it to be possible for the same society that can put webcams in doggie daycare to make safe group homes for these kids a priority.

By Alexandria Matos, Not Impossible Now

Read More Stories from Not Impossible Now:

How a Simple Backpack Can Help Break the Cycle of Poverty in Kenya 

This 19-Year Old Is on a Mission to Create Affordable Prosthetic Limbs

3-D Printing and Dedicated Doctors Give a Little Girl Another Chance at Life

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It occurred to me the other day that most of the blogs and stories I’ve heard or written are about what it’s like to be the mother of a child with special needs. No one ever asks my husband, Paul, what his experience of Lily’s illness and subsequent rehab have been. I can’t answer for him, but I want to take a moment to tell you what my new definition of a real man looks like.

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My husband is a black belt in a form of Japanese martial arts called Aikido, which means he’s strong and disciplined — if need be, he could break an arm. Most people don’t experience my husband that way. One of my brothers, who is a bit of a jock and an ex-boxer, tried to get Paul in a choke hold one time and learned the hard way about Paul’s understated strength and ability.

Most people see him as a tall, thin academic (geek) who loves playing the banjo and fiddle, loves all things having to do with Asian medicine, philosophy and spirituality. Few people know the man I will love until the end of time — the quiet warrior who spent hours in the early morning rocking our seizing baby through tough nights.

Ours is one of the 7 percent of marriages that survive having a child with a catastrophic illness or multiple disabilities. The daily stress that comes from having a child with special needs is so great that most couples don’t make it, and few are ever as close as they were before the child arrived. I attribute the success of our marriage to my incredible partner ,who never told me not to cry, never walked away and who had the grace to just comfort.

I thank Paul for his unbridled, often inappropriate laughter. He once accused me of farting in front of a team of neurosurgeons when I’d fallen dead asleep in my chair in the pre-op room. We laughed through tears as we waited to see if Lily would come back to us alive.

When people ask me about our marriage, my first image is of Paul dancing around baby music class with Lily, who was so swollen from the steroids doctors had prescribed to try and stop the seizures that she looked  like the Michelin Man. I dreaded those classes; even though they were taught by a dear friend and Lily really seemed to find joy in the music and the movement, it was a reminder of how sick she was. I could see the other parents sizing Lily up — not in a mean way but taking note that she was not sitting up and she just was constantly jerking around with each seizure. Some mothers had visible tears in there eyes when theirs would meet mine. But not my man. He danced around that room like the proudest daddy that ever had a baby girl. Just writing this, I’m overcome with love and gratitude that Lily had such a great man from the start.

Every morning for two months, Paul injected a pellet of steroid gel (ACTH) into Lily’s thigh. Even though he hated every second of it, he didn’t waiver and he didn’t complain. He stayed strong for me. The only time I ever saw him crash was the day we were getting our pay stubs together for our taxes and he said, “I only made $2,000 this year?! What was I doing?” He paused, and I saw the previous year flash before his eyes — the two brain surgeries, the drugs, the fear, the tears, the heartbreak — he fell to the floor and sobbed for a few minutes and just said, “It was so sad,” and then he got up and went back to being strong and awesome.

Finally, he takes turns taking Lily to the seemingly endless doctors appointments. I can’t imagine how single mothers do it — I suppose because you have to — but there come points where I cannot go to one more appointment and Paul steps up and takes care of business.

In some ways our marriage is stronger today because of our shared journey. I’m sure many of my friends have their own stories about their men and I would love to hear them!

Thank you, Paul, for being the love of my life and the best dad I could imagine for my girls.

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