An Open Letter to Family and Friends of Autism

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“If you have met one child with Autism, well, you have met one child with Autism”.

While these words perfectly sum up the complexity of Autism, they are limited to the diagnosis itself. These words do not speak to the needs of parents. Needs which are critically vital to the health and mind of those gifted with the responsibility of caring for someone on the spectrum.

Every parent needs the support of loved ones. Special needs parents however, need both support and a level of understanding not found in “typical” households. This higher level of support extends to grandparents, siblings, cousins, friends, aunts, uncles, co-workers and more. A smile and random phone call is nice for many parents, but what these parents need (and often hope for) is a true understanding (even an attempt) of the responsibilities of raising a special needs child by loved ones.

I know. I am one of them.

Autism is not like a common cold where a few pills can help. Autistic children are not pets you can leave inside. Autism knows no age limits (yes, older people have it also). Autism is not something every “professional” understands. Autism is different for everyone – all those on the spectrum are unique. Parents and/or caretakers living with Autism have a complex need and desire to find support and have others relate.

Special needs parents know the personal challenges all too well.

The loss of friends, the strain to relationships, family members who don’t understand, acquaintances who suddenly disappear, teachers who blame bad parenting skills, strangers who judge, the cruelty of other children and more. Lucky parents have amazing (or at least decent) support systems. Many others often feel like they’re raising a child on an island.

Five years ago, my world changed when my son was diagnosed with Autism. So did my view of everyone around me. I have seen incredible kindness from strangers, extreme ignorance from “friends,” unconditional love from unexpected people, the best in teachers, the worst in teachers, financial motivation of “professionals,” brutal honesty from loved ones and more. This entire journey has allowed me to grow in ways I never thought possible.

First and foremost, my son is my world. He is the single most important thing to me, and always will be. He has taught me more than I could ever teach him. His autism is not a disease, not a virus, not something toxic. His joy, his love of life, his charm, his laughter—all of this is the autism I see.

But I am human. I am not perfect. It took time for me to get here. Once my eyes opened, I saw someone who would change my life forever. He also changed my perception of humanity.

That screaming child on the airplane whom I previously wanted to scream back at?

Today I would gladly sit next to that child and have them scream in my ear for a 14-hour flight so their Mom (or Dad) can have some rest.

That “annoying” child flapping his arms around and making weird noises in the movie theater?

Come sit next to me: I’ll buy you popcorn and laugh with you for hours at a scene I don’t even understand. You are amazing.

That non-verbal teenager who will never listen to anything he’s told?

Let’s be awesome together and play with crayons, drawing undecipherable images for days. I’m in.

That Mom or Dad who is trying to hold it together while their child loses it in Target since he dropped a sock?

Mom, Dad. Don’t worry. I will get on the floor and make funny faces and drop a whole row of clothes on me to make him laugh while you both go for a 5 or 50-minute break. You are heros.

Almost nothing annoys me anymore—except for people who do not (even attempt to) understand.

Most people live in a bubble.

A bubble of comfort, a bubble of expected privileges, a bubble where “first world problems” seem to be more important than decent humanity at times.

For the most part, I don’t blame anyone. I used to be one of them. Many have paid their dues raising their own children; some families have saved for years to go on a “peaceful” dream vacation; some friends didn’t see you the way you saw them. However, for those who have people they love raising or taking care of someone with special needs, then it’s important to try and understand—truly attempt to understand—the challenges they’re facing.

How can you find out what these challenges are?

Ask Them. Be Direct.

Ask direct and specific questions like: “Have you seen an Autism specialist?”; “What did the doctor say about his rocking?”; “Have you had his eyes checked?”; “Has the teacher ever told you what he likes in school?” Be specific. Don’t limit your questions to generic words like, “How are they doing?” Your loved one is likely way too tired to respond with anything more than, “They’re doing good.” Basically, another wasted moment of politically correct conversation that didn’t help. Also, never say, “That’s what all little boys or girls do.” These words will likely shut you out of ever having someone open up to you again.

Offer Help.

Truly offer help. Don’t just say, “If you need something, let me know.”

Many special needs parents have a hard time letting go and asking for help. This is not because they don’t want to or need help—it’s because they literally don’t have the energy to explain everything required for you to actually help. Trusting your child with a babysitter for a date night, and being able to actually enjoy that date night without thoughts of war at home, is a task very few people will ever master. (They really should find another name for date night for special needs parents—“temporary leave” sounds better to me.)

Read and Learn.

Trust me, it’s scary when you first start reading about any special need. Now imagine how your loved one feels being years into this. They probably have Google nightmares at times.

Show Up.

Just show up. That’s half the battle.

No child was ever raised without a community. And if you want to understand how your loved ones are dealing with special needs, then you need to become part of the community.

ACCEPT RESPONSIBILITY

The responsibility is on you, and you alone, to take the first step. You might even have to take a dozen steps to break through. Most parents want help even if they say they don’t. Sometimes the challenges are just embarrassing to talk about, other times they are trying to show you they are strong. There are also many times when some parents simply cannot find the words to ask for help.

People change. People adapt. Your loved one is showing you how strong he/she is. Maybe it’s time you do the same.

When you do, the rewards will be much greater than you can imagine.

I know. It happened to me.

A Special Needs Dad.

A Very Proud Special Needs Dad.

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Katy Perry’s Impact on Autism

Katy Perry is one of the most famous singers in the world with number one hits like “Teenage Dream”, “California Gurls” and “Firework”.

She is also the first woman to have five number one singles in America from a single album.

However, for the autism community she has done so much more. She has provided hope, inspiration and tears of joy for millions of people worldwide.

In 2012, at Comedy Central’s “A Night of Too Many Stars”, Katy teamed up with 11-year old Jodi DiPiazza (who has Autism) to sing her hit song “Firework” and it could not have been more amazing. After the performance she said:

We couldn’t agree more. Over 9 million views later, this video will eternally be one of the greatest moments in music.

 

This Is Guaranteed to Make You Smile

Although it’s a few years old already, we couldn’t help toe tapping and singing along to this great video, sung by then 10-year-old Christopher Duffley and the WOC Kid’s Choir. Chris is blind and has autism, and although he didn’t speak until he was in first grade, he always enjoyed music and sings with perfect pitch.

We hope this makes your day like it made ours.

 

Meet the Kids Marching in a New Orleans Mardi Gras Parade

Photo courtesy of The Advocate

Photo courtesy of The Advocate

I just read a fantastic article in the Advocate, about a group of teens with autism who marched in a Mardi Gras parade in New Orleans this past Saturday. If you’ve ever been to New Orleans during Mardi Gras, then you know what an overwhelming experience it can be for anybody, let alone somebody with sensory issues — we’re talking loud music, yelling, crowds, lights, a wild array of colors, and did I mention LOUD NOISES? It’s likely not at the top of any list of potential vacation spots for any parent planning a trip with a child with autism.

But yet, here’s a group of seven children and young adults with autism who didn’t just attend the Mardi Gras parade, they participated in it. Amazing! The group, known as the “Stomp Troopers,” are all students at a studio in New Orleans called the NOLArts Learning Center. The Stomp Troopers project came out of behavior-based therapeutic drama, music, and art classes that began this past December and are led by art therapist Kate Lacour, with the help of volunteers. For the past five weeks, Kate has been blogging about the techniques need to help the kids learn everything from sewing electroluminescent (EL) wire to their costumes to make them light up, to creating drums out of buckets, to creating their own logos.

Of course, the biggest challenge wouldn’t be known until the Stomp Troopers actually found themselves amid the din of Bourbon Street during Mardi Gras. But Lacour has been preparing them for this throughout the process.

“Mardi Gras can be overwhelming even for folks with the most robust sensory systems, and we are very aware that every step should be taken to minimize irritation from noise, movement, physical sensations and general chaos,” Lacour wrote on her blog. “Because novelty is usually aversive, things go more smoothly when presented in small pieces.” These small pieces have included using videos and pictures to help “envision costume themes or parade throws.”

Credit also has to go to the organizers of the Intergalactic Krewe of Chewbacchus parade, the 900-member Chewbacchus Krewe. (As you guessed, members are fans of all things Star Wars, as well as Star Trek and Dr. Who.) They worked with Lacour and her students, helping them design the drums, which are intended to help the Stomp Troopers drown out surrounding noise with their own, controlled noise. They also had them attend rehearsals, and made sure the group had a place right behind the Preservation Hall Jazz Band, at the front of the parade.

Chewbacchus founder Ryan Ballard is happy to be a part of “dispelling the idea that autistic kids shouldn’t march.”

Photo courtesy of NOLArts Learning Center“They came up with the concept, looking for a parade to accommodate children with autism, and I said absolutely,” Ballard said. “The Chewbacchus ethos is one of truly open acceptance.”

And it isn’t just the general public and the Stomp Troopers themselves who should be learning from the experience–it’s also families of children with autism. Sarah Ambrose, a music teacher for kids with autism, told The Advocate: “A lot of families feel they can’t fully engage in New Orleans culture when they have autistic kids,” Ambrose said. “We want to say nay to that.”

How did it turn out? It was an overwhelming success, even when the parade dragged on for an unexpected three hours. in Lacour’s words:

“When they reached the end of the route, the kids were exhausted but elated. ‘We did it! crowed Oliver. The whole crew cheered.”

We only wish we could have been there.

To find out how it went, read Kate Lacour’s blog here.

 

To the Apple Store Employee Who Went Above and Beyond

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Special needs parents know how difficult it can be to take their child to so many places that other parents don’t think twice about going to with their kids. This mom of James, a 10-year-old who’s been diagnosed with Down’s Syndrome and Autism, recently posted on her Facebook page the story of an outing with her son to get a new iPad. When the trip to the Apple store started to go downhill, an employee stepped into save the day.

Because James was born with Down Syndrome, and at six-years-old was diagnosed with Autism, we use his iPad everyday as a learning tool,” the mom, LynnMarie, wrote. After years of use, the iPad no longer worked and her own iPhone, which had taken the place of the iPad, was “limping along.” A friend got her in touch with a charity–Fiona Rose Murphey Foundation Charitable Trust–which offered to buy James a new iPad. Hence, the outing to the Apple Store in Green Hills, near Nashville, Tennessee.

While they were shopping for the iPad, James was distracted by something in the mall and, as kids are prone to do, he ran off to investigate. Unfortunately, he ran full-tilt into the store’s plate glass wall in his haste to exit. As LynnMarie sat on the floor, cradling her son, employee Andrew Wall came over to see if James was alright and to offer his help. LynnMarie replied that James would be okay, but that they’d come to the store to purchase an iPad and then asked Andrew if he’d help them buy it and set it up, “down here on the floor?”

LynnMarie went on to explain, “And so he did. Your awesome employee sat with James on the floor of the store and set up the new iPad. There are no words to accurately describe how grateful I am that he took the time to ‘meet us right where we were.’ He didn’t have to sit down on the floor with us. He could have easily waited for us to stand. Could have easily waited for us to come back another day. But he hung out with us in the midst of our pain. He even got a fist bump from James, and I snapped this photo.”

At first, LynnMarie took to Facebook in order to tell the Apple store how wonderful this employee was and to find out his name. Both have since been accomplished, and we’re proud to pass on not only this wonderful story, but also the name of this kindhearted and generous soul. As LynnMarie went on to post:

“Life is a learning journey. And I walked away from this experience with the reminder to always meet people where they are at. It’s so easy to be so focused on our own mission or plan (or sale) that we fail to see what people really need. I long to be better at this. I long to not be so self-absorbed that I never miss an opportunity to love exactly like someone needs in the moment.”

Thank you, Andrew Wall, for meeting James where he was, and for turning around what could have been an awful experience into an amazing memory.

An Open Letter to New Parents of Autism

 

Family Together

Parenthood. It’s a beautiful thing.

As soon as that pregnancy test shows positive or that adoption call is received, your world changes. Your hopes and dreams are modified to include hopes and dreams for your children. Visions of holidays and birthday parties dance in the air. The word “Mother” or “Father” is suddenly not old-sounding, but kinda cool. Your whole life is changing and you can’t wait for that child to be born.

The child appears and is more beautiful than ever. You can see yourself in them. Your life instantly changes to a focus on keeping them safe and building a better future.

The months go on. You share laughs. You share cries. Everything Parenthood was meant to be, it is. Nothing is more beautiful.

Then one day you notice something. Another day you notice something else. At first, you ignore it or pawn it off, but then your friends and family ask if he/she is “okay,” or your spouse suggests seeing a doctor, or you start reading online about why something isn’t right.

That special spark changes to concern. After all, your job is to keep them safe.

The concern builds. You see sparks in other children that your child doesn’t seem to have. You see behavior that isn’t typical, yet you question what typical really is.

One day you choose to stop playing doctor and go see one.

The word Autism is spoken.

A word that slightly touched your vocabulary before, but was rarely ever used. A word that was seen only in articles you read. A word that never entered your household. A word you really don’t even know the meaning of.

The world stops.

You say it again. Autism.

How? Where? Why?

It can’t be real.

How do we beat this thing? Is there a pill? Can we just give him a shot? He’ll be okay by Sunday — he has to be.

My child doesn’t have Autism. That’s crazy.

Oh, but he does.

New Parents should know that everyone has a different experience, but almost everyone goes through the same feelings.

Responsibility

“Autism is my fault.” “How did I give my child Autism?” – So many phrases like these will circle in your head. You’ll lose sleep. You’ll blame yourself. You’ll blame your spouse. You may even blame the mailman. It’s okay. We all went through this. It’s nobody’s fault. You are not responsible for Autism. You are responsible for keeping your child safe. You are responsible for helping them grow. You are responsible for so many great things and blame is not one of them.

Failure

“What did I do to deserve this?” “I can’t do this.” “I’m not cut out to be a special needs parent.”

First, you didn’t do anything wrong. He/she was made this way.

Second, you were cut out to be a parent. And that means loving your child NO MATTER WHAT. If we all had a choice, I’m pretty confident that a football star, rock star or Mark Zuckerberg would be the first choice for our children.

Sadly, that isn’t what happens. We learn to play the cards that were dealt and that’s what makes a great parent – not wishing for the best of the best but loving what you have. The sooner you realize that your child has nothing but unconditional love for you, and that you are the guardian of the person they will become, then the sooner your actions will help their development. You may not have chosen to be in this situation but you can choose how to deal with it going forward.

Anger

You will hate yourself. You will hate your spouse. At times you will hate how Autism makes you feel. It is OKAY. We all did. Many still do. But the great thing about anger is it goes away. Remember those four magical words: You are not alone.

Trust me, I’ve been there. The parent feeling alone, fighting the world of typical kids and happy marriages. Everyone else had something beautiful. I was robbed. I was angry. I checked out. Then something magical happened. I saw my child. I saw who he was. I saw he needed me. I saw he loved me. I saw he never judged me. I saw he wanted to be like me. I saw he laughed with me. I saw everything. All I had to do was open my eyes.

This will happen to you. Why? Because love conquers all.

Losing Friends

You will lose friends. It happens to all of us. But you know what? With every life change you lose friends. If you change jobs, get married, move miles away or stop dating the hot one … every turning point in your life will involve losing friends. The delusion is believing many of these people were real friends to begin with. You might have 300 “Facebook friends,” but if you can count your true friends on one hand, than you are luckier than most.

You’re a parent now. In fact, you just gained your new best friend for years to come. Your child. This is a time to focus on your family and not those who are just visitors in your journey of life. New friends will appear. Some will be awesome. Some will make you gossip. Some will spill secrets. Some will annoy you. Enjoy the sport of understanding people again. It’s fun and certainly a nice break from watching Thomas the Tank Engine for the thousandth time.

Embarrassment

My favorite. Your child will embarrass you. And not the way typical children will. They may hit you, scream at you, throw shit at you — all in a public place, while making sounds and body movements resembling those of master circus performers. You will look like the parent who can’t control their child. You will feel the eyes of everyone around you. You will feel alone in a sea of judgment. This will happen over and over — and then … one stranger will say something so kind and incredible to you that all of the embarrassment will be gone. You will find strength from that single moment to be Super Mom or Super Dad and say Heck yeah – that’s my child and I am so proud of him.

No one has all the answers for the set of challenges you face. No Grandparents. No Friend. No Doctor. No Teacher. No Advisor. Some can help. Some will guess. Others will have no clue. Many of them are also experiencing the uniqueness of your child as much as you are. One of the most popular quotes in this community is “When you meet one child with Autism, you have met one child with Autism.” A beautiful set of words, defining how unique every child on the spectrum is.

What I can provide are words of comfort and wisdom from being a parent who shattered and then found himself again, and its simply words my parents told me many years ago: “When you fall, get back up.” Your parents likely said the same thing. And you know what, our parents were right. The key is to get back up early and never, ever let the challenges keep you down.

Almost every new parent of Autism (and almost any special needs child) will go through these stages. Just always remember these four magic words.

You are not alone.

Kiley Lyall: Runner Shows Heart and Spirit

I hate running. Although I was an athlete in my younger days, I always participated in sports where running, if present, was a secondary activity—i.e., in field hockey I could focus on keeping the ball away from the goal (I was defense), and not on the running involved to do it. I also swam, so no running. But that doesn’t mean I don’t admire runners. To me, the sheer focus, training and determination engendered in running is worthy of any person’s respect.

Enter Kiley Lyall. This Illinois native has been running since she was 8, despite diagnoses of autism, epilepsy and mild cerebral palsy. She started running 5K races with her mother, who also runs, to raise money and awareness for charities such as the Make-A-Wish Foundation. Just last year she ran, and finished, two half-marathons, even though she suffered two seizures while running in the first one. She successfully finished the Chicago Half-Marathon for a second time this fall.

Her mom, Kathleen, decided to enter Kiley in Women’s Running magazine’s cover contest for the January/February 2016 issue, because so many people told them both what an inspiration Kiley was to them. Although she doesn’t talk much, Kiley’s words, written in her contest entry, say it all: “Running has literally helped my brain become healthier! My autism doesn’t take over my days anymore…when I run it relieves so much stress on my brain, allowing me to function much better through most days!”

Kiley LyallKiley was picked as one of eight semi-finalists. After the voting on those eight had finished, Kiley was the hands-down winner, with more than 10,000 magazine readers voting, to grace the first cover of 2016.

In an interview with The Mighty before she was declared the finalist, Kiley explained: “Being on the cover of ‘Women’s Running’ magazine would mean that I’m just a runner… I may have a disability, but I am conquering what a lot of women are conquering no matter what they look like and no matter their abilities.”

Kathleen says that she and her daughter have talked about “what it’s going to do to open doors” for other people with similar challenges to Kiley’s. “Knowing that we can open doors for other athletes who may have cognitive disabilities but like to compete physically means so much to us,” she told the Chicago Tribune. “It doesn’t matter your abilities. It matters your heart and your spirit.”

We know that there are many other runners, and athletes, with autism who are making amazing strides every single day. We hope that Women’s Running magazines, by featuring Kiley on its cover, inspires even more people – whatever their skills – to go for their goals and dreams.

Florida Special Needs Teacher Goes Viral

My children had a kindergarten teacher, Mrs. Lotano, who paraphrased Maya Angelou to us parents at every annual school Open House. She reminded us that, “Children will forget what you said, children will forget what you did, but children will never forget how you made them feel.” It’s a thought that has stuck with me for years.

It’s obviously a lesson that Chris Ulmer, a special education teacher at Mainspring Academy in Jacksonville, Florida, also takes to heart. Mr. Chris (as he prefers his students call him) starts every school day for his class of eight students by making them feel loved. He spends ten minutes complimenting them, taking time to directly address each child individually. He posted a video of this morning session on his Facebook page, Special Books by Special Kids, and it’s been viewed nearly 36 million times (on his page and in an ABC News story about it) in two days.

His students are all in his class for different reasons – autism, speech apraxia, brain injury, and more – but the respect and compliments he gives them focuses solely on their positive attributes and abilities. His is a model of positive, affirmative behavior and, in the video, Mr. Chris shares that the students now “praise each other”, “never insult one another” and “actively work towards helping each other.” They have learned from his example, and grown from it. “I have seen their confidence and self-worth skyrocket,” he writes in the video.

Shortly after his video went viral, Mr. Chris posted a letter to the class Facebook page, which partly reads:

“I am the teacher praising his students in the recent viral video. This letter is incredibly hard for me to write as I like to keep the spotlight on my students, but I believe this is an extraordinary opportunity that I cannot pass up.

I write this letter early in the morning with a heavy heart and little sleep the past few days so please excuse any errors.

Seven months ago I reached a boiling point. As a special education teacher I have students with a variety of conditions but they all share one common element; they are pure. They represent love and everything that is right in this world. But yet, it seemed as if 99% of society could not see this. One parent even told me that their greatest fear was passing away and leaving their child homeless, wondering the streets and being ignored as if they were a “lightpost”.

I knew I had to do something. I called together the parents of my students and proposed the idea of starting a class blog that openly discussed each diagnosis with access to the children. I fully was aware that this was unheard of and could cause complications for my career. I did not care. These children deserve to be heard, loved and appreciated. The world needs to understand that in many ways, the children have it right. We need to learn from them.

We are all different but we are all in this together.

I love you all,

Mr. Chris”

Whether they remember what exactly he said or what exactly he did, there’s no doubt that these kids will never forget how Mr. Chris made them feel.

You, sir, are 100% Ausome™.

What I’d Say to the Mom I Was Seven Years Ago

Looking BackWhen Ryan kicked ass on trick or treat this year, walking with friends, wearing glow bracelets and not having a single meltdown over how the costume felt, or why Blues Clues was walking down his street and not on his television in the family room, after I stopped sobbing over how far he has come, I couldn’t help but be amazed at how far I have come too.

As he blended into the crowd of teenagers laughing and giggling, I couldn’t help but wish I could go back in time to a previous trick or treat where I lay crying on my bed and pull back the covers and make me see what I couldn’t back then.

Throughout this autism journey, there have been many moments where I have wondered, “Where the hell is Marty McFly and his time-traveling DeLorean?” Where was Marty when I fell apart in that psychologist’s office after hearing The A Word, to give me a ride to the future to see that one day The A Word would NOT be as derogatory as The F Word? Why didn’t Marty just pull up curbside when Ryan was so obsessed with weather that we almost had to block the Weather Channel like some folks have to block Cinemax, and set that time machine a year or two ahead to let me know that one day we could actually plan an outdoor activity, even if there was a 60% chance of a thunderstorm? Where was Marty to show me that one day Ryan would be able to wear a suit and tie and sing in front of an audience of hundreds of people, when I was practically sitting on him to put on “scratchy” mittens and a hat in 10-degree weather all those years ago?

As much as I would have loved to take a road trip to the future with Marty McFly back then, if that DeLorean pulled up in my driveway today I wouldn’t want to shoot to the future: I would want to cruise to the past. To go back to a time when I was at my worst, to sit down with the mom I was seven years ago and help her see that, even if Marty McFly rode up in his DeLorean to show me how it all turns out, the future was not where I was supposed to be. Even though I would have loved just a tiny glimpse of what was to come, the present is where I needed to stay because the present is where Ryan always was, always is and always will be.

Yes, if Marty set the DeLorean to 2008, when Ryan was 7, I would grab the much-younger, less-wrinkled me (and admire her skin for just a moment) and have a sit-down with a bottle of wine and try and make her listen and learn from the 2015 me. And if the Past Me would listen to the Present Me, here is what I would say:

Stop comparing. He is not his big brother, the kid down the street or any of the kids in his classroom, so stop comparing him to all of them. He is Ryan and yes, he does not play like the other kids, he does not learn like the other kids, he does not talk like the other kids, but the way he plays, the way he learns and the way he talks is unique and really kind of fascinating. So focus on him; not on others.

Don’t try and change him. Yes, you will still see those differences, even if you stop comparing, but, don’t try to change him. Don’t make him look you in the eye when he can’t, don’t make him wear clothes that he can’t, don’t make him participate in activities that he can’t. Instead see all that he can do and accept him for that.

Enjoy him. When he laughs, laugh with him. When he spins under the kitchen light, spin with him. When he presses the same button on a toy over and over and over again, instead of plugging your ears and worrying, sit next to him and enjoy him. When he plays with a toy in a way other kids don’t, get on the floor and play like him rather than showing him “the right way.” Enjoy the fact he has found his way to play rather than making him play in a way the directions or you expect him to.

Listen to him. When he scripts in a silly voice, script back in a similar-sounding silly voice instead of saying, “I want to hear Ryan’s voice” because that silly script is his voice. He is communicating with you, so listen and you will hear him.

Be there for him in the present and stop worrying about the future. Oh, me seven years ago, the things you will miss worrying about the future. The beautiful, little boy who stands right before you now will be gone in the future. He will grow up and, like most teenagers, he will pull away. Don’t miss the present worrying about the future.

See the strengths, not the deficits. Yes, he struggles to communicate. Yes, he has a hard time making friends. Yes, he is incredibly rigid in his thinking. And yes, he has a lot of sensory sensitivities. But he is brilliant, he is a rule follower, he is musically gifted, he is hysterically funny and he will one day be stronger than anyone you know.

Appreciate the routines and schedules – they will pay off one day. When you skip aisle 5 (the pet food aisle) in the grocery store because you don’t have a dog or a cat and he melts down because you skipped a number, go down aisle 5 anyway. These routines, these schedules, are how he makes sense of the world. If you could figure out the world by hitting every aisle in the grocery store, wouldn’t you?

Admire him. Sneak into his room when he is sleeping, after his brain has finally shut down for the day, and brush your lips across his still-damp, clean head and appreciate its glorious smell without focusing on how hard it was to get it clean. Admire all that he accomplished that day, even if was just taking a shower.

See him. See past Autism to the boy who lies beneath the label. That is where you will find him. He is not on Google, he is not in the DSM-IV or DSM-V, he is not in a therapist’s office, a doctor’s office or in any book you will read. He is right in front of you, so see him.

Advocate for him. Make others see him, not his autism. Make others hear him, not his autism. Make others aware of him, not his autism.

Find new friends. Stop drinking wine with Denial, Clueless and Guilt and instead have Acceptance, Awareness and Forgiveness over to dinner. Oh, and let  them bring the wine.

So there you have it: Some advice from Present Me to Past Me. Heaven knows, this list could be endless. Of course, if I would have said any of these things to the old me, the old me would have surely run over the present me with that DeLorean. Because the old me had to live it to learn it. She had to cry to laugh. She had to doubt to accept. She had to worry to appreciate. She had to understand to advocate. She had to hurt to love. She had to do it all on her own… without Present Me, Future Me or even Marty McFly.

Before the old me tried to take me out and run me down, I would try and get the last word. And those words would be to keep her mind, her eyes, her ears and her heart open and maybe then she will no longer spend quite so much time in the past or the future. Instead, she will be in the present, right where Ryan is, right where he needs her to be.

In the past and the present, I have made horrible blunders, but my biggest regret – the one thing I would want the 2008 me to learn from – is to appreciate the present, to love him and accept him here and now. The future will be here soon enough and I know I had to prepare him for it, but I didn’t have to let it steal the present.

So, hey me! Stop waiting for Marty McFly and just sit back and appreciate the present. Because by tomorrow, today is gone.

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Kate and her family have lived in Mechanicsburg, PA for the past 20 years. When Kate is not busy advocating “different, not less,” she enjoys reading, binging on Netflix and spending time with her family and friends.

Kate HoovenIn addition to her advocacy service and her blog, Kate is also a Justice System Consultant for PA’s ASERT (Autism Services, Education, Resources and Training) Collaborative. With her prior experience working in PA’s Juvenile Justice System and her passion for advocating for children and adults living with autism, Kate enjoys her time training probation officers, police officers, attorneys, judges, correctional officers and others employed in the justice system in order to raise awareness of the impact an autism diagnosis has on those that become involved in our juvenile and criminal justice systems.

Kate hopes that, through her writing, she is sharing a real, raw and AWEnest look at how autism impacts her family, and in doing so, she may help other parents recognize that they are not alone on this autism journey. Her stories and photos are shared with permission from her incredibly AWEsome son, Ryan, who also wants people to believe that even though he is “different,” he is not ever “less.”

To read more from Kate, follow her on Facebook or visit The AWEnesty of Autism website today.

350,000 Miles. Thank You US Airways.

usairways-7Traveling with children can be difficult. Traveling with a child on the spectrum can be even more so.

Last month marked a big milestone for us. US Airways officially become American Airlines, my son’s favorite airline. In the past 3 years we have recorded over 350,000 miles collectively on US Airways, and for over a year my son has been so excited about “The New American.”

Don’t get too excited. This isn’t anything like Brooke Saward’s incredible World of Wanderlust journey but rather (mostly) necessary commuting. A simple “you do what you have to do” as a parent. In our case, however, cars won’t do; we need planes.

From what started as a “Let’s see how this works” 3 years ago to a regular routine, US Airways has become an integral part of our life. This could have turned out many different ways but over these 350,000 miles we have seen nothing but friendship from the staff of US Airways.

From the check-in staff to the Flight Attendants to the Pilots, there have been so many moments to be thankful for and so many great memories made. Just a few include:

  • The Amazing Gabby who gave my son a “really shiny airplane pin” he wears proudly on his book bag every day.
  • The Awesome Francine from Paris who always has patience to chat and ask about his day.
  • The Pilots out of St. Maarten who gave him his own travel book.
  • The Club staff who always great him with a smile and welcome him back (even if they don’t know his name).
  • His favorite Flight Attendant in the whole wide world (a title which can be bought with warm chocolate chip cookies).
  • The TSA agents who play along with his stories.

It takes a village to raise a child (any child) and having a son on the spectrum has its own special challenges. While the American Airlines merger is complete with US Airways, I do want to send a very special thanks to the staff of US Airways, who made the last 3 years of consistent air travel full of incredible memories. Words really cannot express my gratitude enough.

To all the Flight Attendants, Check-in Staff, Club Staff, Pilots, TSA employees and everyone involved with helping us create this book of memories and making our lives a lot easier….

THANK YOU.

Always So Happy to See the Check-in Computer

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The Proud Day of Getting His Air Force One Model.

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Just Happy to Be on a Plane.

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Captain’s Hat Day !

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Let’s Try the Right Side Today – Always with a Smile.

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Hide and Seek – Note the Captain Always Wins.

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Walking on the Runway !!!

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Can I just take a nap here?

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Seriously Dad. Another Picture, I am so over this.

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“Daddy, If I Make The Pilots Laugh Will I Get Free Snacks?”

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