“Your child has the physical skills of a newborn,” is never something a parent of a 1 year old wants to hear.

Given our daughter’s many diagnoses, it perhaps would have been justifiable to give up and accept what many of the experts were describing as a life of limits. A life of can’ts. However, in our case, with a lot of work and determination from many people, 12 years later, our daughter has become a rhythmic gymnast and a dancer. Erin’s current reality would not be possible if we had accepted her original prognosis.

Erin was born 8 weeks early with Down syndrome and just about every physical complication that could come with it. She had 3 major surgeries in her first 6 months and spent almost half of her first year in the hospital. When she was cleared for Early Intervention at 6 months, we began working with Developmental, Speech, Occupational, Physical, Music, and Swim therapists along with a nutritionist. She also took a weekly inclusive music class.  We immersed ourselves in Signing Time videos, and Erin had an age appropriate vocabulary—with sign language being her first language. She used an NG tube for the first 11 months of her life. She and her team worked hard. Her siblings were also expert play therapists and creatively included Erin in every activity they could. Shortly before her third birthday, Erin transitioned to the school based Early Childhood program, and a hospital based Physical Therapy program, using a walker and crawling. She was able to first walk in swim therapy with the buoyancy support.  One week after having ear tube surgery and with a candy reward system her sister devised, Erin walked for the first time on Halloween, just before her third birthday.

Sometimes the most amazing things become life changing break throughs. Looking back, we had two of those break throughs. Erin’s Aunt and Uncle sent her a rhythmic ribbon for Christmas. Nothing fancy, but Erin would play with the ribbon for hours. She would put the song, “Let it Go,” on repeat and dance and dance. I began searching for opportunities to develop this interest and found that Special Olympics offered rhythmic gymnastics. With the help of her PT at the time and her sister the dancer, Erin began applying all she learned into an athletic framework. Having mastered crossing the midline at a younger age, we hadn’t worked on it much. That is until her ribbon routine called for a figure 8. What her sister and I thought would be easy became a complex motor planning exercise months in the making. The advantage of the Rhythmic Gymnastics framework was that, while therapy isolated and made it difficult to attend extracurricular activities, a recreational based model provided socialization, confidence building, and added a skill development. She moved from being a patient to a performer. She then became involved with Unified Sports, which is an inclusive model, gaining peer modeling and socialization. This transition to a recreational based program gave her a chance to perform with her friends at a Special Olympics Gala. Her years of PT work allowed her to overcome her physical challenges and use her grace and strength to show others the possibilities.

The second break through for us came when a service dog named Cassie joined our family. At the time, Erin was using her hard-earned physical therapy work to elope. Cassie would alert us if Erin was headed out the door. Erin really did not appreciate the sensory overload of having a dog bark at her and stopped eloping within 3 or 4 months. We also trained Cassie to track Erin. This gave us great comfort and playing hide and seek with a dog was a wonderful activity for Erin and her friends. Erin also helped train Cassie, which provided fabulous leadership and speech opportunities. Cassie was a great reinforcer of ending consonants, as in “sit,” “down,” and “shake.” Cassie was great support for 9 years, taking us for walks, playing ball, and being a loyal friend. She also taught us about saying goodbye this week, as she passed over the rainbow bridge, Erin insisting she be by her friend’s side, as Cassie has been by Erin’s side all these years.

Our other animal partners have been the horses at the Hanson Center Therapeutic Riding Program. Horse back riding is not only good for core strengthening, but it provides a valuable connection to a beautiful creature.

To continue our transition from medical based PT to life-long recreational based exercise, we have begun working with Angela Rodriguez, owner of Kines Training and Coaching. As Angela says, “Exercise gives you confidence, makes you strong mentally and physically, makes you self-sufficient, and helps you handle every day life.” These are things I strive for myself and wish for all of my children. They are also key for achieving joy regardless of ability. Erin is currently working on yoga with Angela, improving balance and strength. The two and Erin’s sister are also working on breathing to help with focus. “Breathing brings back the focus and supports regrouping and changing your reaction,” Angela said.

Life-long fitness is much more effective when people find and do what they love. For children with special needs, doing this may require a medically-based therapy program to develop skills and strength needed to move into recreational-based programs. Therapists working with Special Olympics and other programs can help their patients continue to receive benefits long after treatment has finished.

Since the age of two, when I incurred a spinal cord injury, I have used a wheelchair. One of the most complex parts of living with a disability is handling the way the rest of the world receives you.  I am a super observant person and feel like often I am met with people being unsure of how to move, communicate, or simply coexist with me.  This has led me to a concept that I’ve integrated into my life called, “Hosting Your Own Party.” What I mean by this is that you have the opportunity to either lead or to host situations which might be totally awkward, and turn them into light and controlled moments. How do you do that? First, you must remember that you know yourself and your disability better than anyone! So, below are the steps on how to Host Your Own Party:

1. Look the Person in the Eye and Greet Them:  People will often rush to one of two things: help or get out of the way.  I think reminding others that there’s no rush and that everything is under control is helpful.  We’re all human beings and no one’s going to bite… yet!

2. Be Clear and Precise: Whether you need help or assistance with something, or do not want help (for example getting in and out of an Uber), I’ve found that clear communication has been my best friend.  For example: I say, “I do not need help getting in the car.  I just need help with my wheelchair.”  Now, a lot of people don’t hear you or believe you, and rush to help you regardless.  This is your moment to stop and remind them that you’re the host, this is your party, and they’re not going to grab the reins on this one!

3. Be a Coach: I was lucky and grew up with a coach for a Dad. I’ve found a lot of success in offering positive reinforcement when dealing with someone who seems nervous around me.  For example - back to getting in and out of an Uber – I’ll tell the driver, when they’ve helped me in the way that I’ve asked, “That’s great. Thank you so much!”  And if they happen to get grabby, and try to help in ways that I haven’t asked for, I’ll tell them simply and clearly, “No, don’t do that. Thank you.”

4. Give Yourself Credit: By taking hold of these situations in your life, you give yourself the confidence to know, “You got this.” It takes practice, and you need to do the reps.  This “hosting your party” thing doesn’t just happen overnight, but over time, being disabled can become really powerful. It can make you realize that you can do anything as long as you’re doing it in your own way.  Give yourself a pat on the back.  You’ve accomplished a task that required another person coming into your party and you’re the one who got them there!

5. It’s Not All About You: One of the secrets of living life with a disability is to give others the opportunity to feel helpful.  Remember that kid in the first grade who was just dying to help the teacher? We all have that little kid inside of us and you’ve given someone that opportunity to reconnect with them.

6. Confidence is Key: Okay, I consider myself a pretty confident person.  I’ve been in a chair since I was two years old and have worked so hard to love and trust myself over the past twenty-eight years. However, there are days when I have to fake it. I choose to fake it because I find that even canned confidence feels better than none at all.

7. Costumes and Treats are Helpful: I respond REALLY well to rewards, always have. It was one of the ways I was taught to push my wheelchair as a four year old: “Ali, if you push to the end of the block, you can have anything in my purse!” my babysitter would say.  When I’ve had a tough day or a tough moment where all these tips that I’ve given haven’t worked, I go to the coffee shop and I get myself a treat. Maybe a brownie….  Even if I didn’t do great, I know I tried my best. “Costumes” in this context means that I like to wear clothes and accessories that make me feel FIERCE.  I need to feel like superwoman sometimes after pushing fifteen blocks, and looking down and seeing my favorite Doc Martens on my feet gives me that boost.

Everyone with a disability has their own style. It’s taken me years to find mine. These are tips that have helped me, and if one of them can give you a hand, I’ll be thrilled, because you deserve it!  Go out and “Host your party” to the fullest, in your own way. You’re kicking butt!!

Love and respect,

Your party planner Ali

Editor's Note: To learn more about Doreen and Eli's story and to find more resources for stutterers, check out their website.  You can join the Voices Unearthed facebook group here.

Our son Eli, now 21, stutters. He began stuttering (actually, blocking) when he was 2 ½.

My experience raising a child who stutters inspired me to write Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter. The long version of what I’ll say here can be found in my book, but here's the short version: Eli's struggle to speak began around the time he was three. Despite starting therapy, his stutter worsened and between the ages of three and nine, he became increasingly silent and disengaged in the world around him.  

Initially, Eli attended speech therapy that focused on fluency shaping and stuttering modification. This therapy was intended to “fix” him, or at least help him to stutter less. His therapists offered him all the tricks of the trade: they taught him how to stretch out sounds, take deep breaths while speaking, distract himself by tapping on his leg, and make good eye contract with those with whom he was speaking. They also taught him more complex strategies, like how to practice easy linguistic bounces and onsets (using repetition to practice saying a word in an easy way).These strategies only succeeded in so far as they taught Eli that the less he talked, the less he stuttered.

By the age of ten, frustrated with his previous treatment, we finally found a therapist who focused only on getting Eli to talk. As this therapist put it, “his previous therapy sucked all the fun right out of talking.” Over the next few years, we got our son back.

Through it all, we tried a variety of treatments to work on Eli’s stuttering. We tried yoga and meditation, but he didn’t follow through too much (nor did I!). Our main goal was always to support Eli as he explored his interests and passions and to surround him as much as possible with loving and supportive friends (both kids and adults) who knew how to interact in a way that didn't impede his communication.  Now that doesn’t mean that his buddies, brothers, and parents didn’t ever talk over him or interrupt him – we all do that to each other all the time, but we tried our best to keep all of that at a minimum – not just for him, but for each other too. We all became much better listeners in the process of helping Eli overcome his stutter.

We all became much better listeners in the process of helping Eli overcome his stutter.

Today, Eli dreams of becoming an astronaut or at least being involved in the space industry. He is a senior in college, always on the dean’s list, and is currently working as an intern at NASA in their prestigious intern research program. (They’ve already invited him back for next summer!) Once Eli knew what he wanted to do, there was no holding him back. Last summer, during his NASA internship, he called every week with stories of people to whom he had introduced himself, and the many interesting discussions they had about shared interests, research, and upcoming opportunities.  And yes, he still stutters with severe blocking at times! He also has tons of friends and has had several girlfriends.

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My best advice for the parents of children with “differences” is to make room in your child’s life for lots of exploration, experimentation and failure. Help them build their confidence, self-esteem, and a strong sense of self.  Be crazy, goofy, joyful, and silly with them and with yourself. Show your vulnerabilities and acknowledge your failures so your child can see you get through them. That's how they'll learn to do the same.  

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When I was a kid, I wanted nothing more than to run away from my existence. The simple act of conversing was filled with so much anxiety that I often chose to stay silent because it was just easier and less embarrassing.When I used to call my friends on the phone, I recorded myself onto a tape recorder (remember those? 😊 ) so I didn’t have to actually speak when asking my friends’ parents to talk to my friends.

When I was in high school, I decided that a life of shyness, pain, and anxiety wasn’t a life I wanted to lead anymore. I didn’t want to run away from my fears. Instead, I decided to push straight into them and see what happened.

Recently, I read a Facebook post that was honest and vulnerable about stuttering, and it inspired me. Don’t get me wrong, I’m not shy to talk about my stutter, and I definitely don’t run away from it anymore, but I also don’t really talk about either. I just assume you either take me for who I am, or you don’t, and I feel no need to discuss it further.

However, it’s always good to take a step back and reflect on the things you are grateful for.  Doing so makes me realize that I am grateful that I stutter.

It may sound strange to say because most people who I know in similar situations would completely disagree with me. It's certainly true that if I didn’t stutter, I would be a very different person,  but I think that’s kinda the point. I like who I am and a large part of that is because I struggle so much when I speak. Allow me to explain.

HERE ARE SIX REASONS WHY I AM GRATEFUL FOR MY STUTTER:

1. I experience an ever-renewing feeling of accomplishment.

Stuttering is a daily struggle, whether I like it or not. Every day is a new decision to not let it get the better of me. It’s a battle I constantly choose to win. That feeling of accomplishment is contagious and rolls over into all your my decisions and actions — mundane or serious. Knowing that you’ve already won battles today makes it not a big deal to accomplish more. It's strengthening and empowering.

2. I am sensitive to others.

Knowing what it feels like to be on the receiving end allows me to appreciate and think about others’ struggles and successes more than I might if I didn't stutter. I am more in tune to understanding people, and I take the time to make sure I understand  what they want and how they feel.

It's that interest in people that enables me to take the time to really think about what people want and need. This skill goes beyond the personal; it is very helpful in my professional career as an educator and as a marketer.

When creating a marketing strategy, knowing your audience is crucial. Being able to really know what they want and how to deliver it in a way that matters is what makes a campaign successful.

I might not be so good at that if I wasn't as sensitive, and I might not be as sensitive if I didn't stutter.

‍3. I never feel that old.

This one is hard to explain — but I’ll try. Carrying something with you from childhood kind of keeps you in that state of mind. In certain regards I have left that part of life behind me and forged forward, but there is still a part of the past that I hold on to. It's the part that knows I’m not perfect, the part that knows I struggle, and the part that knows what it’s like to feel pain, frustration, and humiliation. These are parts I don’t want to let go of. These are the parts that propel me forward into always challenging myself and to appreciating others.

When you hold onto parts of your childhood, something about it keeps you in that mindset. So for me, I still always feel like my younger self, though I have accomplished and am proud of so much about my adult life.

Also, because of my stutter, there is still a part of me that feels like "don’t take yourself too seriously, focus on what’s important and don’t get caught up in stupid stresses". One of my favorite quotes is: "Only focusing on things that matter, and not 'adult stupidities' keeps you feeling young at heart and in action."

4. I am patient.

They say “Patience is a virtue” — and it definitely is. I cultivate patience for myself and patience towards others every day. Patience can often be swapped for strength. It’s not easy to wait for something. It’s not easy to be slow to anger or slow to get frustrated. My life experiences have taught me patience, and that has been a great gift.

5. I allow myself to be inspired by others.

When you have firsthand appreciation of what it’s like to struggle and succeed, it easily puts you in to the shoes of others. You realize and appreciate that the road is not always easy and when things are hard, people want you to know. By the same turn, when things are good, people want to share with you. Community and networks are grown when people appreciate and respect one another. The world works because we are not all the same person.

Going to the prom is often a rite of passage for teenagers, and yet many young people with differences don't get to go to prom because their schools or support programs don't sponsor prom events. That's where the Tim Tebow Foundation comes in. Every year the Foundation hosts "Night to Shine" events all over the country and world, where people over the age of 14 with differences can come to get their hair and make up done, get their shoes shined, ride in a limo, dance the night away, and be crowned King or Queen of the Prom. It's a very special program and this year it takes place on February 7th.

You can check out highlights from last year's event in the video below, and we'll be updating this post as we get highlights from this year's event in the coming days. Given the popularity of last year's events, which drew 100,000 people, this year's events are likely to draw 115,000 guests with disabilities and 215,000 volunteers.

Looking to find an event near you? Check out this year's event locations here.