Mom Has Brilliant Solution to Lack of Appropriate Clothes for Teens With Special Needs

2k
2k

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

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

This Is My Definition of a Real Man

138
138

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.

391246_459263690760295_528987328_n

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.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

138
138
JOIN THE CONVERSATION

To the Stranger at Kohl’s Who Said the 2 Words I Needed to Hear

386
386

I’ve always been an adventurous mom. I’m like to try new things at times just to see if my son can handle it or not. With autism, of course, there’s always a cost to being adventurous. On this occasion, the cost would have been too high if not for the help of a stranger.

It was Christmas time two years ago, and my son, Daniel, was 5. My mother and Daniel have been and remain close. I thought it’d be nice for him to pick out something for her for the holiday. I knew he’d enjoy getting to be in on the secret of what Grandma was getting. So, I took my son with autism to Kohl’s department store.  My plan was to get in and get out before the environment completely overwhelmed and overstimulated him.

We went in and grabbed a watch he chose for his grandmother and ran to the checkouts. I stared in dismay at the long line I didn’t plan for. As I tried to decide what to do, Daniel suddenly pulled away from me, grinning and dancing in place — signs of overstimulation. I knew I had to get him out — and out now — before I completely lost control of him. I put down the watch and grabbed him and headed to the exit.

My confused and overwhelmed child began to fight, understanding only that we were leaving behind his grandmother’s gift. I kept pulling him to the car, desperate to get to a place where I could calm him down and try to get him to understand. The parking lot was dark as I fought my way to our car. I suddenly realized I had to let go of my son to get the keys out of my purse. I tried to trap him between me and the car, but it was no use. The son who solves his meltdowns by running away began to run across the dark parking lot and into traffic. I began to sob as I ran after him, desperate to get to him before he got hit by a car. Suddenly, a stranger appeared in front of my son with his hands out. He used his body to block my son from running any farther, without touching my panicking child. Daniel stopped in confusion long enough for me to catch him.

I glanced at the stranger, telling him “I’m sorry. He has autism.” He said only, “I understand.” I headed back to the car with my son to hold him and tell him how sorry I was through my tears.

I’ll never forget the stranger at Kohl’s. I think often about his words: “I understand.” And I think he really did understand. Perhaps he knew someone with a child with autism. I don’t know. I do know those two words are the most needed and least used in this world.

unnamed-2

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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

386
386
TOPICS
JOIN THE CONVERSATION

How I Finished Mourning the Loss of a Child Who’s Still Alive

3k
3k

faith! My oldest daughter, who is now 11, was a caring, sweet girl who loved her family and friends. She was shy if you didn’t know her, but to those close to her, she was outgoing and full of laughter. When she was 6 a horrible turn of events forced everyone in her life say goodbye to the “old” Faith and begin to become familiar with the “new” one. Although no one for one moment stopped loving her, it was a huge adjustment — one that will likely be on going for the rest of our lives.

Faith fell ill with herpes encephalitis. When she first became sick, there were whirlwinds of tests and explanations — none of which I understood. When the neurologist showed me pictures of her MRI scan that first night in intensive care, I didn’t understand. I certainly didn’t understand the severity of the infection in her brain or what this meant for her. I cried when he told me how serious it was and that she will be lucky if she pulled through, and then I was left alone. I’ve never felt so alone.

I could spend days going into every detail of our 103-day hospital admission, but I’ve pushed aside many memories, trying to forget the pain, trying to move on.

We were moved out of intensive care and onto a medical unit, Faith still unable to move or speak, just lying there staring straight ahead. Another MRI revealed the infection had caused extensive brain damage. We were told to be prepared for a “new” Faith. How does a parent prepare for something so horrible? How does one adjust to going from having a sweet little girl to this new girl who only stares off into space? The answer is you don’t. You put your feelings on hold and busy yourself with her care and talking to doctors and family and friends. You don’t allow yourself to think or breathe. On the nights I was home, I would feel empty. Being home forced me to temporarily deal with all the thoughts and feelings I’d put on hold. Random things would make me think of all that would never again be a possibility. It all seemed so unfair.

Recovery from a brain injury is slow and painstaking, and each small step forward meant two steps back. We were told again repeatedly that this is likely as good as it gets and once again reminded that this could be the new Faith . This girl, this new Faith, slowly relearned how to stand, how to walk and how to talk — but where was the Faith I knew? Where was the daughter I raised for the past six years? She was gone, and in her place I found someone new, someone who can make me laugh and cry at the same time, someone who has the ability to light up the room with a smile, someone I love fiercely. Time has passed, and things in many ways have not gotten any easier, but one thing is clearer.

There isn’t an “old” Faith or a “new” one. There is Faith.

In the early days, it was hard to let go of my hopes and dreams. Although it took a long time, I’m no longer sad. I just have new hopes and new dreams and all in all, a new outlook on life.

I will always get upset about what’s happened, and it will never be fair, but I’ve moved on. I let go so I can enjoy the seconds, minutes and days without being surrounded by grief. It will always be an uphill battle.  Faith’s brain damage is extensive, she’s lost almost all of her frontal lobes, and the damage extends beyond that.

But I am strong and I am ready to link arms with Faith and head up the hill.

faith

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

3k
3k
TOPICS
JOIN THE CONVERSATION

The Art Project That Reminds Us We Can Do This Whole ‘Special Needs Parenting’ Thing

51
51

A year ago, my water broke with a trickle around 4 a.m. I wasn’t having any contractions so I figured it would be a while before I had a baby in my arms. At 9 a.m. I completed the art project I’d been working on and insisted my husband hang it in our bedroom above the birth pool (which I refused to let him fill since I was “probably dayyyyssss away” from having a baby).

hard things

Then we went berry picking for three hours in 90+ degree weather.

I was convinced we needed strawberries for jam.

Well, the berries went bad in the heat on my kitchen counter because labor started later in the evening, and my baby was born early the next morning.

He came out screaming and didn’t stop (or sleep!) for several hours and soon impressed us with strong preferences and will. Little did we know this was a sneak peak into our next year.

Parenting is one of the hardest things I’ve ever done. It challenges me daily and has changed me immensely. I used to roll my eyes at terms like “special needs” because they sounded so euphemistic and cheesy, but I get it now. It’s special, not strange. Different, not bad. And sometimes it just is.

I’m humbled by the care of our community and thankful to know the vulnerability of having to rely on others after being a do-it-myself-er all my life.

And each night before I go to bed I look at my art project and take a deep breath reminding myself that we can do hard things. And indeed we already have.

danielle

This post originally appeared on Couch to Five Acres.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

51
51
TOPICS
JOIN THE CONVERSATION

The Moment I Realized Everything Was Going To Be OK, Despite the Diagnosis

377
377

My fiancé and I had just gotten engaged and were discussing our marriage and having children. We each already had an older daughter from our previous relationships. I was 33 at the time, and we decided, to hell with it — we’ll do the kid thing first, then the wedding.

It was September 2013 when we began trying. I found out I was pregnant in October. From the beginning, I knew this child was special. I didn’t know why, but I just knew. I also knew we would have a boy, though no one believed me. The pregnancy progressed as usual: vomiting, grumpiness. In one ultrasound, we learned we were in fact having a boy and settled on the name Zachary (Zak for short). The testing to check for genetic issues came back with a 1 in 100 chance of Down syndrome.

When I received that information I said, “OK, no big deal, that’s a 1 percent chance.” I doubted it would happen. My water broke at 2 a.m. on June 23, 2014 — I was 36 weeks and 5 days along. Zak entered the world at 2:36 p.m. that day; he cried out, and then there was a huge crash of thunder — my boy came into this world making noise! His Apgar scores were great, and we all held him and loved him and marveled at his perfection.

About 24 hours later, the on-call pediatrician came in looking solemn. She looked at me while I was holding Zak and said, “I’m pretty sure your baby has Down syndrome. ” So matter of fact. So blunt. I was honestly shocked. I looked down at Zak and couldn’t hold back the tears. I didn’t even know why I was crying. I think society has just always made Down syndrome appear to be such a negative thing, so I assumed it was. Boy, was I wrong.

20150202_073153 Since my 8-year-old daughter was in the room, I placed Zak in the bassinet and went into the bathroom, knowing with all my hormones out of whack, I was gonna lose it. Two minutes later, my fiancé came into the hospital room bathroom and wrapped his arms around me and said, “Why are you crying?” I couldn’t even tell him a reason. He then said, “It doesn’t matter. He is our son.” That is the moment I knew it was gonna be OK no matter what. My fiancé was right. Nothing mattered. Zachary is our son.

The karyotype came back, and Zak did in fact have Down syndrome. I buried myself in information. I needed to know everything. I quickly became an advocate and knew I would fight for my child. We all easily accepted his diagnosis. Zak is now 7 months old and simply amazing. He’s reached all his milestones on time so far. He has no major medical concerns. He does have a small heart murmur and aortic stenosis. He has acid reflux. But our lives are just like every other family’s life. We have three beautiful children — one just happens to have been made with a little extra to love. We plan to marry in October 2016 (I want to wait until Zak can walk, so he can walk me down the aisle).

Zak has brought our entire family closer together. He’s the puzzle piece that was missing. Together we’re a family. To some we may not seem normal, but to us, our family is just as it was meant to be.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

377
377
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.