When a Shirt Proved My Son’s Assistant Is His Biggest Supporter

“Wow! He is capable of so much more than I would have thought possible just reading his file before I met him!” Music to a mom’s ears. She gets it. She gets HIM. We are going to be OK.

He is my son, Nick, high school freshman, music lover, thrill seeker with an infectious smile that can charm just about anyone. She is Allison, recent college graduate studying for her Master’s in Special Education, always looking for the positive in every situation, hired to be Nick’s assistant as he navigates his school day.

Nick has autism. His biggest challenges are communication and sensory processing. These challenges can make it difficult for him in the general education classroom. In fact, before high school, the majority of Nick’s class time was spent in a self-contained classroom. As we were preparing for him to enter high school, I wanted more inclusion for him so that he really felt a part of the school. While this was not the usual path for kids coming from the “Lifeskills” program, our high school was willing to give it a try for Nick and he was enrolled in 4 of his 6 classes in a general education setting.

Allison has been his biggest supporter every step of the way. When curriculum needs to be differentiated, she collaborates with Nick’s team of teachers to modify assignments so that they are meaningful to Nick and he can participate with his peers. Allison is equal parts Mama Bear and Mama Bird, keeping a watchful eye on Nick while pushing him out there and letting him fly, always looking for ways to facilitate his successful inclusion in a group.

One recent assignment in History really touched my heart. The students were assigned to design a t-shirt that represented them. Allison contacted me to get a few more ideas about Nick’s interests. I relayed that he loved music, rock climbing and the outdoors, which was pretty much what she had in mind. Since drawing is difficult for Nick, we decided that she would draw a shirt and then have Nick find pictures to mimic the drawing.

When I saw what she came up with, tears came to my eyes.

It was the perfect depiction of Nick with the title “Put No Limits On Me.” My son gets to spend every day at school with someone who believes in him beyond measure.  There is no greater gift.

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.


To the People Who Send Me Articles About What Causes Autism

Hey, you. Yeah, you. You have a child with Autism.

And you know what? It’s not your fault.

A few days after you informed your family your son (or daughter) had been diagnosed with autism, a family member posted a link (and tagged you) on their Facebook page. The link contained an article called “Tylenol during pregnancy is now linked to Autism Spectrum Disorders.”

A different family member called you to let you know, “they always knew there was something wrong with him.”

Another one let you know they had thought that (autism) was what was wrong with him, because they read about it on the Internet. And we all know everything we read on the Internet is true. And Google can diagnose anything. And using Google makes said family member an actual doctor. Feel free to roll your eyes right now.

Maybe they’re all trying to help. Maybe they’re just oblivious to the fact your world just crashed to the ground in a million pieces and they think somehow, some way, this information is going to help you.

But what it really comes down to is this: it’s not your fault.

No matter how many articles you read that link different things to be the possible causes of autism (vaccines, Tylenol, GMO’s, genetics, environment, etc.), nothing you did or didn’t do caused your baby to have it.

It’s completely natural and normal to sit and drown your sorrows in article after article about the possible causes of your baby’s Autism. We all want to know, right?

But what we really just need is support. Not people telling us how we may have given our children autism.

You didn’t give your child autism. It’s not your fault.

To all of the family members out there trying to be helpful by passing along information, please don’t. I can guarantee we already know this stuff. If you want to help us, do something to support us. Ask how we are. Come over to play with our children. Try to understand and have compassion for us and don’t be mad when we tell you that you will never truly understand what we are going through.

Most of all, never, ever tell us it’s our fault.

Because it’s not. It’s just not.

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

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


Why I Think of My Grandmother Every Time I Put Boots On

My grandmother used to call me “Bootsie” because I refused to wear anything other than my sparkly pink cowboy boots when I was a kid. My insistence had a little bit to do with the fact that my family happened to be living in Texas at the time and a lot to do with my stubborn 8-year-old fashion sense and commitment to making a statement.

Screen Shot 2015-04-21 at 9.49.25 AM

“Well hey there, Bootsie,” she’d say in her Philadelphia accent when I marched into a room. She’d be cooking something — she was always cooking something — and I’d twirl for her and stomp around the room while she worked. She’d ohh and ahh and say I was a model.

It’s been a long time since she called me by that nickname. In her last few years with us, her memory declined, and although she always seemed to know who I was, that was about all she could remember.

Gram passed away about eight months ago (I wrote about her passing here), and now I live in New York City. Although a lot has changed, I still rarely don any footwear that isn’t boots. However, now I’ve replaced the flashy, bejeweled cowboy boots with a pair of dirty and well-worn black Frye boots. They still give me the same shiver of confidence when I march out the door in them.

Every time I splash through a puddle or thud into a restaurant or bar, I think of Gram and I smile. I know she’s with me.

And I can hear her saying, “Well hey there, Boostie.”

Screen Shot 2015-04-22 at 10.04.05 AM
My sister and I with Gram.

The Mighty is asking the following: What’s a memory with a loved one that you didn’t realize meant so much until they passed away? 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 celebrate the human spirit? Like us on Facebook.

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

In 7,367 Minutes, I’ll Witness the Event That Made This Moment Possible

In just 122 hours, a year of preparation will all get put to the test. In 7,367 minutes, a group of 30 of the most talented, brave and amazing young women of Minnesota are going to be walking across a stage in gowns just as unique as the girls in them. 

Screen Shot 2015-04-20 at 3.29.29 PM

April 25 is the Minnesota Miss Amazing 2015 Pageant. I am a state co-director of the event. Minnesota Miss Amazing is a nonprofit organization that’s a branch of the National Miss Amazing Organization, which Jordan Somer started in Nebraska in 2006. It’s a program that creates pageants for girls and women, ages 5-35, with disabilities, giving them an opportunity to develop lifelong skills in a safe, endlessly supportive environment. 

Screen Shot 2015-04-20 at 3.30.05 PM

Throughout the day, Minnesota Miss Amazing participants are going to be busy practicing their talents, learning skills from Miss Minnesota USA, playing games and getting pampered like queens… all for the price of donating five cans of food. The girls will work on their presentation skills, tie blankets and so much more, all building up to main event.

The young women compete in three different skill areas. First, one-on-one interviews with our judges where experienced professionals will ask the participant or the participant’s representative simple questions about themselves to practice communication and conversation skills. The second area of competition is their on-stage introductions where the participant states their name, age and a few of their favorite things, which allows the participants to gain experience with public speaking and be proud of their abilities. And finally, evening wear, an opportunity for the participant to wear their favorite dress and be escorted by a (pretty cute, in my opinion!) young man. This gives the participant the opportunity to showcase their confidence through body language and poise. Once the judging is done, our professionals get to put down their pens and enjoy a talent show that the girls are encouraged to take part in, giving them the opportunity to show off their favorite talents.

In a mere 442,059 seconds, I’m going to be able to enjoy one of the most rewarding parts of my journey with Miss Amazing. I will get to watch these beautiful, unique women transform into princesses when they hear the applause from the audience. I will be able to stand backstage next to my co-director Jordan Crosser and we will be able to celebrate with the rest of the community all of the abilities of these girls and women with disabilities.

unnamed (15)

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.

I Asked If I Could Handle Being Her Mom. This Was the Answer I Needed.

I suppose it could’ve been worse.

Over the years, I’ve told myself this when thinking back to July 20, 2007.

Everything about my third pregnancy was normal, right down to a good strong heartbeat, a perfect ultrasound that showed 10 fingers and ten toes, and a baby that measured exactly as it should each week. Even as the first signs of labor came, there was never any indication that my second daughter would be anything less than perfect.

But things quickly unraveled. Shortly after arriving at the hospital, my midwife, Lucie, told me the baby’s heart rate was too high and because of that, they were moving me up to a regular Labor and Delivery room, not the Alternative Birthing Center like I had planned. I was upset, but I knew she knew what was best for us, so I went without any fight. Once we got settled into the L&D room, Lucie broke my water and immediately noticed meconium in the fluid. She told Corey, my husband, he wasn’t going to get to cut the cord and warned us about the team of pediatricians that would be standing by ready to take her as soon as she came out. I knew meconium (the baby’s first bowel movement) usually isn’t a big deal, so I wasn’t really worried about it.

The second Cadence was born, just as Lucie said there would be, the doctors rushed in and worked on her for what felt like an hour, but it was probably more like five minutes. I didn’t hear her crying, but I knew enough to know that was okay; I needn’t be too concerned. When after a few minutes she was barely squeaking, they told me they were bringing her to the NICU and I could expect her to be there my entire stay. She had inhaled a considerable amount of meconium and needed extensive care. They brought her over to me for a quick hello and after holding her for a few seconds, she was gone.  All I remembered about her was her eyes. They were open and gorgeous!

I knew she was in good hands. I tried not to get upset and I told myself she was going to be fine. No matter what she was going through, they had everything they needed to care for her and help her with her breathing until she was well enough to do it on her own. So as I lay in the bed with empty arms, I was calm and relaxed, clearly a mother on her third child. Corey was pacing around the room and Lucie was collecting the cord blood we had chosen to bank when she held up the umbilical cord and announced, “Here’s our culprit.”

And there, in the center of my daughter’s lifeline for the previous nine months, was a true knot.

Lucie said it was likely that at some point Cady had tugged at the cord, momentarily cutting off her oxygen and causing her to gasp and inhale the meconium. I still remember my mouth opening slightly as I just stared at it, thinking how lucky we were the knot didn’t kill her. I never for one second thought that it had given her brain damage.

But, as the coming days would tell, it had. After the NICU nurses raised some questions about Cady’s behavior, they began testing. They said it could just be she was worn out from fighting so hard to breathe (she was on oxygen for eleven days), but her unresponsiveness and lack of certain reflexes concerned NICU staff. Soon, an MRI confirmed what a CAT scan had suspected. Damage to the thalamus. No prognosis available. Only time would tell the life my daughter would lead. If I had a dollar for every time I was told about the “elasticity of the newborn brain” and its “ability to heal itself” I’d have had enough to cover all the cafeteria food I was eating.

Looking back, the next six weeks were a blur. I was overtired, stressed out and extremely nervous, anxious, angry, depressed… all of the above. There was even some guilt: “What if my body had just delivered sooner?” “Did the exercises I had hoped would induce labor cause her to tug at the cord?” “Why couldn’t I have just left well enough alone and stopped at two children?” I had a 3-year-old daughter and another baby at home (my son had turned 1 only 12 days after Cady was born – clearly still a baby in my eyes) and there were days when I wondered how I would ever get through the ordeal.

And if all that weren’t enough, when she was exactly 4 weeks old we were hit with more bad news. Cady, who at this point was only still in the NICU because of problems feeding, was silently aspirating her formula. Had we not caught it, another bout of pneumonia was inevitable. Surgery was scheduled and at just 4 weeks and 5 days old, my child was put under general anesthesia yet again as a feeding tube was placed in her abdomen. She went home a week later.

Her first weeks home were close to unbearable. She hated the darkness and silence that is the night. After nearly six weeks of constant lights, beeping sounds and full-on alarms, Cadence had literally not had a moment’s peace since she was born. I spent many nights begging her to sleep and one night, with just the streetlight shining into the room and across her face, I wondered what our life would be like. I sobbed to her, asking her if she thought I could handle being her mother. Could I handle the stress of caring for a disabled child? Would her problems be physical, mental, both? How was I going to do this? Did I have it in me?

And then, and I swear this is the truth, Cady cracked her first smile. It wasn’t a great big one, but more of a little smirk that says, “Hey you,” followed by a knowing wink. I brought her to my neck, held her tightly and as I cried into her blanket sleeper, I felt as if she understood my sorrow and wanted to give me something, anything to hold on to. Time truly would tell all, but in the meantime, I would, and knew I could, do all I had to for my daughter to ensure the best possible head start of her challenging life. 

At 18 months, she was officially diagnosed with spastic quadriplegic cerebral palsy and today, at 7 years old, Cady is doesn’t walk, talk or even eat, has very limited use of her hands and has a seizure disorder. But she has more sass and resolve than anyone I know. She talks with her eyes and when she smiles at you, she hugs your soul. Cady makes friends wherever she goes and often people stop and say, “Hi Cady,” as I’m left wondering who that person was. The most popular girl in school, the children love watching her take off down the halls in her walker, head high, determined to join her classmates for gym, library or music.

Is it easy? Absolutely not. Do I have days where I feel sorry for her, daydreaming of the child she could’ve been? An astounding yes. And do I get angry sometimes, wishing things were different, easy… normal? Of course. I wouldn’t be human if I didn’t. But then I look at her and she smiles and I know she is here for a reason. It isn’t often in life when the child is the teacher, but I’ve no doubt she’s here to guide me through this crazy life, teach me patience and remind me God always has a bigger plan.

Now, when I think back to July 20, 2007, I know it could have been worse. The knot could have killed Cady and we would never have been blessed with the joy of her smile, the twinkle in her eyes and her hearty and contagious laugh. The pride we felt when she finally rolled over and began using her hands to catch herself from falling is something we would never have experienced.

Hearing the word “perfect” used to describe her was amazing, even if it was only to express how well her hips were forming, and watching her pull herself into a sitting position and pick up her head to smile at you as if to say, “Ma! Look what I can do!” is enough to make it all worthwhile.

Having a child with a disability means many things, but most of all it means fighting harder for the simple things, feeling prouder over every accomplishment and never taking a single laugh, moment of eye contact or feeling of understanding for granted.

Yes, it most definitely could have been much worse.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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

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

Why I Choose to Call Myself a Cripple

I’m a cripple.

Yes, I said it. I’m not the pathetic, broken person your mind may have conjured up when you read the word. I am a strong, adventurous, stubborn woman, who just so happens to have joints that can dislocate without warning.

Eight years ago I was pretty healthy. I held a brown belt in judo, rock climbed and was a regular at my local gym. I’d had some surgeries on my wrist but they had never kept me away from sport for long.

Seven years ago I met my husband and, to our great delight, I quickly became pregnant. During the pregnancy I had a lot of joint pain, which was put down to pregnancy hormones and we presumed I would return to full health once our son was born. Unfortunately this didn’t happen and I was diagnosed with Hypermobility Syndrome. It is a genetic disorder in which connective tissue is of a low quality, so my joints are not held as firmly in place as they should be by ligaments and tendons. This leads to regular dislocations and muscle spasms, which are incredibly painful and very disabling. There is no cure, but progression can be slowed by using physiotherapy and hydrotherapy to build muscle strength, and medication can help to reduce pain.

Everyone deals with disability in their own way and mine is to use humor to make myself smile when I feel like giving in. My husband and son join in, shouting “Run, Forrest, run!” as I hobble across the room, or “Swim, Forrest, swim!” when I am in the pool using my one-arm, one-leg technique to power myself through the water. When painful muscle spasms cause me to twitch and kick out my legs, my husband describes me as a lolloping cabbage, as he drags himself out of bed at 2 in the morning to get my painkillers for me.

Some people believe that when a disabled person uses these labels, it encourages their use by other, less well-intentioned people. They are adamant that politically correct, person-first language should be used at all times, and if you would like to be termed a “person with a disability,” then that is entirely your right. Equally, it is my right to choose to call myself a cripple and to laugh at references to Tom Hanks films.

I’m a cripple. Disability took away my old life and it took a hell of a lot of getting used to, but it doesn’t own me. Even if I am unable to get out of bed, as is the case several days a week, I can connect to the world using my laptop and it’s amazing the crafts you can do and games you can play from your bed when you have an enthusiastic 6-year-old and a bit of imagination. I can even push my son on the swings at the park while sitting in my powerchair, albeit carefully as I have been known to dislocate my shoulder in the process!

I am slowly regaining my adventurous spirit, attempting things that I wouldn’t have considered possible a few years ago. Later this year I am doing a parachute jump in aid of a neurological charity who helped us find answers when our son was being assessed for autism. It is going to be a massive strain on my body and I will have every vulnerable joint splinted – I’ll probably  look like a right muppet but it is a once-in-a-lifetime experience. Sometimes you have to say “sod it” to pacing yourself and jump into the deep end… or out of a plane!

I’m a woman, a mother and a wife. I’m bruised, aching and scarred. I’m strong, passionate and determined. I’m a cripple, and that’s all right.

victoria hewitt

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.