Featured - Part 26

I Get Jealous

December 11, 2015/by Angela Conrad

I’d be lying if I said I never get jealous because I do. Is that bad?

It’s one of those things that I hate to admit but it happens. I get jealous! I am a special-needs mother and I simply get jealous of non-special-needs mothers.

Now, don’t get me wrong, I have a great life. I have two wonderful boys who both happen to have autism. My oldest has severe autism and my youngest has mild autism. There are certain days that I feel like I could be an autism expert! I mean, how could I not be? I’m raising a good range of the whole spectrum in my house daily. I fight the daily battles of having a non-verbal child. Yet, I fight the daily battles of having a child who is VERY verbal with no filter whatsoever! Needless to say, our life can be very interesting and our house is never quiet.

With Trenton, I fight the issues of having a child who is in his own world 24/7. At the same time, I fight the issues of having a child who wants to be in everyone else’s world 24/7. My son Andres is the definition of hyper-social! My daily experiences with my sons are completely opposite. I could discuss the range of the spectrum in depth to the fullest that it has ever been spoken about. However, I’ll save that for another day.

Roller-Coaster Life

During my roller-coaster life I often find myself fighting jealousy. It creeps in like a thief in the night. On some days I feel like it comes out of nowhere—but does it really come out of nowhere? Maybe it came in a little bit at a time when I didn’t even notice. Maybe it sneaks in behind my strength I show every day. Maybe, just maybe, it’s always there but I block it.

Jealousy is all around special-needs parents. I never know what kind of emotions I’ll have and battle with daily until the situation arises. Sometimes we’re mad, happy, tired, sad, jealous and desperate. Sometimes we feel defeated and hopeless, but driven. On some days we are enthusiastic, courageous and frustrated. The list of our roller-coaster emotions could go on forever. However, the one that creeps in most often is jealousy.

Communication

I get jealous when I see children Trenton’s age that can communicate. I get jealous of other children and parents when I see Trenton have a meltdown because of his frustration at not being able to communicate. This jealousy of other children turns into sadness and I am sad once again for my child.

Jealousy comes when I see the sadness and fear in Andrew’s eyes. Andrew’s eyes are a strong voice that give away his wave of emotions when he doesn’t want to tell me. I get so jealous of the children his age that don’t have to fight the social fears that he does. Once again, my jealousy turns into sadness and I am sad for him—sad that he has to fight these daily battles.

Simple Tasks

I get jealous when I see other mothers at the grocery store with their children. I get jealous of the children who are walking along with their mothers, not having any meltdowns or battling any sensory problems while in the store. I get jealous at the mothers who can do the easiest and simplest task with their children because sometimes the easiest and most natural task takes days of planning and preparation for us.

Date Night

I get jealous of the parents who can go out and have a date night with their spouse. Not everyone is jumping at our door, excited to babysit a child with severe autism.

Sports

I am jealous of the children who get to play t-ball and who get to participate in all the social activities that most children enjoy. I am jealous of their parents who get to go and watch their children take part in “normal” extracurricular activities. I am jealous of everyone who gets to sleep at night. Our house doesn’t know what it’s like to sleep. My list of jealousy could go on and on and on, forever.

Me Time

In fact, if you’re a parent that can even let “your guard down” for a few minutes, then I am jealous of you too! I don’t know what it’s like to let my guard down for five seconds. My guard is up and going strong every minute of the day with two boys with autism.

Jealousy hits often and when it does, it hits hard. No one even knows when I am battling it because I don’t let it show. I’ve learned how to smile and live life to the fullest behind those jealous thoughts. I’ve learned how to hide the pain and keep it from interfering in my life.

I have always been known to be a down-to-earth, simple girl who has always been grateful for what I have been blessed with in life. I am beyond grateful for my two boys. I wouldn’t trade them or our life for anything in the world. In fact, my boys have made me a much better person because of their special needs.

With that said, getting jealous of others is human nature. Jealousy takes over when I just want to have a “normal” day with no autism battles. However, at the end of the day, I am beyond blessed in life. I couldn’t be more grateful for my sons and their special needs. They are truly worth it.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.

A Bad Mom. Oh No, You Never.

December 3, 2015/by Alan Dunn

Last week we shared a link on Facebook to an article titled, “I Admit It: I Like My Child Better When He Is Drugged.” It was written by Kristie Mae, the creator of Abandoning Pretense and a regular contributor at Nickmom.com and Bluntmoms.com.

Kristie did not ask us to share the link. I logged into Facebook that morning and the article somehow appeared in my newsfeed. Having just gone through a medication change for my son, this was a topic I thought would be of great interest to our AutismAwareness.com community so I decided to share.

Once the article was posted, there was some typical discussion on both sides of the fence: The expected “Don’t use medication” to “Whatever works for the child” and “I can relate to this” comments.

For a topic that I expected to maybe become a little heated, it was quite well received.

But then, over the next few hours, something would happen that really concerned me.

One commentator started off by saying she refused to read the article, and later said: “that’s where I realized she’s definitely drugged her kid to make HER life easier, because that’s obviously not a parent that can deal with having a challenging child.”

There was another comment from the same person that was much harsher, and we ultimately ended up banning her. Yes, we can do that.

Why? Because there’s a line you shouldn’t cross.

Our writers, our friends, and the people we find – every piece of content we try to curate for our Facebook page is derived from a hunt for honest and open opinions and stories from people who live with or are exposed to Autism.

This content is not easy to write. In fact, it’s often some of the most personal moments a writer has chosen to share with the world. And this content, these opinions, those words were not created to sell ads, create shock value or plug a brand. They were written to share and help others going through the same challenges.

Some years ago I made a mistake. I called someone a Bad Mom. Yes, I did. I’m not proud. In fact, it’s one of the biggest regrets of my life.

I didn’t release how powerful those words were. I didn’t realize what I meant to say should never have been expressed in those two words.

I didn’t mean it as hard as it sounds, but no matter what my reasoning I learned that you NEVER EVER call someone who is trying day after day to provide the best care for their child a Bad Parent.

In fact, you should never say these two words, period. A Bad Mom or Bad Dad. These words are so wrong for those who are trying.

If I could turn back the clock, I would.

So when one of our community members wants to personally attack one of our authors or some writer whose story we felt compelled enough to share, then we need to step in.

Any content provider on AutismAwareness.com should know we do our best to make you safe from personal attacks, from ignorance, from name calling. Healthy debates are great. Cyber bullying (especially by adults) is just 100% wrong and ridiculous. We will not stand for it.

Our kids have challenges. Our marriages have challenges. Our personal lives have challenges. Our work lives have challenges. Our entire lives have challenges. This community, however, is meant to inspire, meant to bring together people, meant to be a place to share.

My team spends more hours deleting spam comments, increasing filters and monitoring the page than you will ever realize. We have also spent a significant amount of personal money to build this community. All of this is for the simple goal of a safe community.

Why? Because I need it. You need it. Our kids need it.

I thought I was alone for a long time. Many of you, I am sure, feel the same way. We are not, nor ever have been. We just needed to embrace the community of people around us facing the same challenges.

So, on my watch I promise that we will do everything we can to continue to make our Facebook page a safe community where you should never be afraid to share. I can’t promise we will not see the above events happen again, but I can promise that those people will be quickly banned.

Autism is hard. Parenting is hard. Parenting + Autism is incredibly hard.

But we’re all doing the best we can, and that’s what makes someone a good parent.

To those who do not understand this, Well, go fly a kite, to be polite.

Kiley Lyall: Runner Shows Heart and Spirit

November 20, 2015/by Rachel L. MacAulay

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 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

November 20, 2015/by Rachel L. MacAulay

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™.

Holidays and Autism. It’s That Time of Year Again.

November 19, 2015/by Angela Conrad

It’s that time of year again where most people start bouncing off the walls with excitement. We just had Halloween and now most people are getting their Thanksgiving plans in place. In fact, once Thanksgiving is here, it is officially that time of the year where everyone is thinking about the holidays and finding just that perfect gift for their loved ones. Before you know it, you are invited to not only your office holiday party, but your neighbor’s party, your side of the family’s party, your spouse’s side of the family’s party, and the list goes on and on. The average family thrives on all the joy and excitement that this time of the year brings. However, to many families, it simply brings nothing but more stress, anxiety and heartache.

To my family, the holidays are a very stressful time. It is a guarantee that, if we do attend a holiday party, we will be paying for it that night or even the next day. The extra stimulation is just simply too much for Trenton and can send him into sensory overload. That, of course, happens if Trenton even lets us step foot into the holiday party. Most of the time he goes into a meltdown just entering in an unfamiliar place and, before we know it, Trenton’s tears, screams and body slamming starts immediately.

It goes without saying that, if we do have the privilege of staying at a holiday party for a little bit, it is anything but enjoyable. I spend my whole time chasing Trenton around the party, making sure he isn’t going to break something. I am on his heels picking up the destruction that a child with severe autism can make in a matter of seconds, while everyone’s eyes are on me, staring at us in utter amazement.

Truth be told, it is just so much easier to turn down every holiday invitation. However, when I say we won’t be able to make it, I often get a confused look and I’m asked why. Now, how in the world do you explain to people who do not live with autism why you can’t make it?

As you can see, the stress never goes away! I have yet to decide which way is the easiest.

Next comes the question, “What would Trenton like this year?” Honestly, I have no idea! He is a five-year-old boy that is nowhere close to playing with appropriate toys. In fact, he doesn’t even play with toys. All he does is walk and pace around the house and occasionally play with one of his stuffed animals or animal figures. As his mother, I have no idea what to get him let alone what to tell everyone else to get him. Sadly, there is no guarantee that, after everyone spends money on him, he will even play with the toy. He may unwrap the present or he may unwrap it a week or two later. If he does unwrap a gift, it is often followed by disappointment on the giver’s face because he unwrapped their gift but tossed it to the side like a piece of trash. Deep down he may really like the gift but it’s just not what he wants at that moment. Getting others to understand that is a hard one.

Let’s not forget that during the busy holiday season we often have to deal with schedule changes. Schools and therapies are closed more to give their employees time off. We all know that schedule change and getting out of a normal routine can be brutal to many individuals with autism.

This time of the year can make us sad and jealous. I often get sad hearing about everyone’s big holiday plans and holiday traditions. I hate to admit it, but I get a little jealous too! Oh, how I long to have a wonderful fun-filled holiday tradition. How can we not get sad and jealous when the picture-perfect holiday times are all around us? I have not yet seen a holiday movie with the struggles an autism family goes through. As a matter of fact, almost every holiday movie is about the perfect ending for the holiday season.

The list of the stress that the holidays brings to families with autism could go on and on. If you’re like me, you can breathe a little better come January 2nd every year. Even though it’s hard and a very rough time, I take comfort in knowing that I am not the only mom or family going through the stress of the holidays with severe autism.

To my fellow autism families, hang in there this holiday season. We will get through it, like always.

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To read more of Angela’s journey please visit her website or like her Facebook page.

To the Wonderful Men in Our Lives… Thank You for Everything

November 17, 2015/by Geraldine Renton

It has been three years since we said our “I do’s” and like everything with us, our journey to happily wedding bliss (depending on the day you ask!) was anything but “average.”

We literally do live with the motto of “Live, Laugh and Love” — all thanks to our Ethan and the road he has brought us on.

We don’t mind people forming opinions about us: People will do that whether we mind or not, so why bother being upset about it? We spend a lot of our time being upset, worrying over things we cannot change. Things that are just unfair. Things that no parent should ever have to face. We stare that in the face daily. So people have opinions about us — so what?

There is nothing truer than this: Those who mind don’t matter and those who matter don’t mind. (Dr. Seuss)

We wanted to get married for a few years, but with me being a carer and D just not earning enough, it seemed like an impossible dream. D knew I would never get married without having Ethan there. With the rate of us saving money compared to the cost of Ethan’s progressive condition, we knew deep down we would probably never have “our” day.

That was until D applied to… wait for it… Don’t Tell The Bride. Yes, the TV show.

I can already hear the chorus of voices saying, “I’d never ever do that!” Well, it was never in my wedding day plans either, but when you have a terminally ill child, your views, opinions and hopes change.

I just wanted my son to be with me on my wedding day.

The title of the show gives it away: I didn’t know anything about our wedding day until the day of our wedding – 7th November 2012. It was magical and, thanks to a TV show, we had our wedding with all of our little family beside us.

The eight years before we said our “I do’s” are the years that shaped us as a family. They are the years that cemented us together.

We sat in many doctor’s offices, begging them to listen to us when we said: “There is something going on with our son, Ethan.” Each and every doctor we saw for exactly five years told us the same thing. “He’ll grow out of it. Children meet milestones at all different ages really. Geraldine is an over-anxious mother. D talk to her, she’s seeing things that are not there. It’s a cold, some kids find it hard to shake off a cold: my own had a constant cold for months last winter. Did you breastfeed Ethan, Geraldine? Ahhh see now? Bottle-fed babies tend to get sicker more often…” These are only some of the comments made to me and about me.

After each visit, D would hold my hand and tell me: “A mother knows, Ger. We’ll get to the bottom of this, promise.” To have someone stand with you and believe in you when doctors are telling you that you’re wrong; well, there’s no comfort like that. We traveled a long road to get Ethan a diagnosis, and D was beside me each and every step of the way.

Global developmental delay
Sensory processing disorder
A heart murmur; a valve not behaving itself
Hearing impairment
Autism
Mobility issues
ADHD

Finally, in 2008, all these symptoms added up to Hunter Syndrome: a life-limiting condition for which there is no cure. Now doctors said “Go home and love him. You won’t have him for a long time. We are so sorry.”

Together, D and I went through friends deaths, a house fire that left us with nothing (we were very lucky and stayed with D’s parents until we found our feet again) and then Ethan’s diagnosis. Life seemed to be playing a cruel prank on us.

I remember talking with D for hours, late into the night, offering him a “get out of jail free card” after Ethan’s diagnosis. I genuinely felt that he really could leave as he owed me nothing. Asking him to face this with me seemed selfish on my part. I could see the pain on his face before he ever opened his mouth. I had caused the man who had been on this journey with me for years more pain than I ever could have imagined, just by saying something I thought I should say.

I tried to take it back, but he looked right at me and said: “I’ve been Ethan’s dad since I met you, pretty much. He was just 18 months old when I first laid my eyes on him; he is now 6. Do you think I would really leave? Do you?” I looked at the ground and gestured “no” as he continued. “I love our family. You don’t need to say things like that to me. You don’t. I’m your partner and a daddy to my two little boys. One day we will get married and do all that jazz, but now–” He reached out for my hand. “Know I am always in your corner… unless you give out about Star Wars,” he laughed. “Ya silly woman!”

That was the moment I knew I had something great in my life and that I always would. My (now) husband: my D, my partner, my buddy and the one who always makes me laugh.

And so, seven years later, we are here. Ethan is 13, J is 10 and the toddler is 2.

D will always give me a break once he gets home from college. I don’t have to ask.

D will insist I make a date with a friend so I can have a few hours to myself over the weekend.

And when Ethan has a meltdown in a public setting… Well, watching D deal with Ethan is so heartwarming, it still catches in my throat when I witness D’s approach and how quickly Ethan responds to him.

I have rarely had to leave a family gathering due to Ethan’s sensory issues. D is the one that leaves, reminding me to relax while he brings the three boys home so I can fully engage with our families.

Yes, D has his faults. Star Wars, for example!

Yes, we argue. Yes, we take our stress out on each other. And yes, we do not have a perfect marriage. But there is no one else that walks this earth who I would rather argue with.

We know we are both lucky and we know we are both in this together. No matter what, we will always have each other.

To all you wonderful dads, partners, step-dads… You don’t get enough praise for all you do, you really don’t. Thank you for make the world a brighter place for us all. x

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By Geraldine Renton

Read more from Geraldine by visiting her website and Facebook page. Geraldine began to write privately as therapy and recently began writing publicly about learning to live, love and laugh again since her son was diagnosed with Hunter Syndrome.

Arts and Autism: An Increasingly Easy-to-Find Combination

November 15, 2015/by Rachel L. MacAulay

The recent disturbance by a child with autism at a play on Broadway has brought something to the public’s attention that many of us have known for years. It is difficult to take our children to cultural places and performances.

Engagement with art and theater is important, however, as research shows. The ongoing addition of the Arts to the much-touted STEM curriculum in schools—to form the new STEAM (science, technology, engineering, arts, and math) initiatives—shows just how important a role Art plays in life, as well as intellectual development. Furthermore, as this article on PBS Kids points out, “Learning to create and appreciate visual aesthetics may be more important than ever to the development of…children as they grow up.”

So what are parents, grandparents and other caretakers of kids with autism to do? Take heart, that’s what, because there’s been a dramatic rise in the number of plays, concerts, exhibits and other artistic events geared specifically to children with autism and sensory processing disorders.

The Blue Men Tone It Down

Anybody who’s been to a Blue Man Group show knows that engagement in the arts can be a sensory explosion. Noise, lights, crowds—it’s like giving your child a cocktail of liver, pickles and orange juice and expecting him to keep it down. You’re just setting your child up to fail. And, while we’d all love for our children to experience the joy and exuberance of a live music show, it’s much more likely to end in tears, and possibly terror, than happiness.

But take heart: The Blue Men have recently introduced a version of their show that’s geared towards fans with autism, with their goal to provide a safe environment for those with sensory issues. Changes to their typical presentation include: reduction of their sound and light levels; available sound-reducing headphones; a subdued approach to their audience, including limiting their typical “chair walking” where they interact with the audience; and the utilization of the theater’s lobby as a calming place for families that need a break from the excitement.

Creating Musical Autists

An organization called The Musical Autist has introduced Sensory Friendly Concerts® to bring jazz and classical music to audiences who might not get to experience them otherwise, as well as a venue for musical “autists” to perform their works. The group is striving to prove the validity of community music therapy as important to the health and well-being of individuals with autism, and the community as a whole. They also want society to realize that “autistic culture” can be included and accommodated alongside neurotypical performers. The concerts are currently available in seven locales across the U.S.

Interactive, Imaginative Theater

Lincoln Center in New York City recently wrapped up a month-long run of Up and Away, an original production commissioned by Lincoln Center Education specifically for children on the autism spectrum. The production took two years to make, with the intent of creating “an environment where there’s no right way to experience the show.” As Jonathan Shmidt Chapman, the director of Up and Away explains in this video, the Trusty Sidekick Theater Company, which created and produced the play, worked with children with autism to create this wondrous spectacle: “Theater that’s made for them. Theater that can engage and enchant them. Theater that can unlock their imaginations.”

The Rose Theater in Fremont, California also just finished multiple showings of an interactive production called “A Palette of Possibility” that allows children to get up and mingle with the actors if they desire, or stay seated in one of many bean bags, stools, carpet squares, or other diverse seating offerings. Audience members are encouraged to use props, move around or even make sound effects as part of the show, which utilizes four of five senses (no taste), but nothing unexpected, jarring or loud.

Museums Go Hands-On

Museums throughout the U.S. and U.K. have begun offering special hours or exhibits specifically for individuals with autism. As an example, the Museum of London has its Morning Explorer program, open to children on the spectrum who are 13 or younger. The program opens some of the museum’s galleries one hour early on certain predetermined dates so that these children and their families can explore at their own pace.

The Museum of Fine Arts in Boston has a special monthly program titled “Artful Healing” that’s designed for 8 to 12 year-olds on the autism spectrum. The children are grouped by age and/or needs and the 90-minute class includes both exploration of the art galleries and an art activity. One adult can accompany each child for free; the fee is currently $9 for the child.

This is by no means intended as a complete and comprehensive list of arts and music programs that are autism-friendly, but instead meant to showcase the rise of autism-friendly shows, exhibits and concerts. Many movie theaters have also started hosting autism-friendly showings of kid’s movies geared specifically for children who can’t stay seated or still or even quiet for the entire time.

In order to find a program in your neighborhood, ask around or search the Web. Many programs are one-offs or have short runs. However, we can all help change that by supporting and attending them when they’re available—as the saying goes, ‘vote with your feet.’ While it can be troublesome to get your child out the door and to a show or museum exhibit, there’s a very good chance it will be more than worth it: That an introduction to the Arts will open your child’s eyes and world in ways you never imagined.

Art is that powerful.

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

November 11, 2015/by Kate Hooven

When 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.

In 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.

November 8, 2015/by Alan Dunn

usairways-7 Traveling 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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Love Needs No Words

November 4, 2015/by Angela Conrad

Raising a child who is unable to communicate has been one of the most challenging parts about autism. It is not simply just the fact that he is non-verbal but, at this time in his life, he remains unable to communicate. Even though we have shed countless tears together through our frustrations of not being able to communicate, Trenton has taught me that love needs no words.

Oh yes, I long for the day when Trenton can communicate to me. Just like any parent of a non-verbal child, we want to hear our child’s voice. I am blessed with the fact that Trenton can say a few words, such as “juice”, “cookie” and “ice cream.” However, it doesn’t go much beyond that.

Even though his words are limited and his ability to communicate through any other method is also limited, he has been the greatest teacher that I have ever had. He has taught me a lot about love, acceptance, courage, strength, patience, determination, perseverance and many other things in life.

I have learned through Trenton that there is much more in life than words spoken from our mouth. Trenton speaks volumes daily through his actions. Sometimes I have to dig deep to figure out what he is doing or what he is trying to relay to me. On some days it is not easy to figure out what he wants. I have gone into meltdowns myself trying to figure out what he wants because I was having a difficult time trying to figure it out. The anxiety that builds up in me when I am trying to figure it out before he reaches his climax and goes into a meltdown is very nerve-racking. I am sure most parents of a non-verbal child with autism know exactly what I am talking about.

Even though our days are not easy, they are very rewarding. The way his eyes light up when he knows I figured out what he wants is priceless. The little pat on the leg he gives me when he is happy is his way of thanking me. The happy noises I hear from him are the sweetest music that my ears have ever heard.

In our house, we do not need any words.

Nonetheless, just like any other parent who struggles daily raising a child who is unable to communicate, I dream about his voice. I dream about talking to him. I dream about the day he will walk up to me and say, “I love you, Mom. Thanks for everything that you do.” Oh how I dream!

There is nothing wrong with dreaming about that day. Don’t we all think about and dream about things that we want so badly in life? Some days are much easier than others.

Some days the frustrations are not as apparent as other days.

So, to the parents of non-verbal children out there, I understand your pain and struggle. I know the numerous tears you have shed for your child and with your child. The highway we travel on this journey in life is a tad bit difficult. However, the joy our children bring to us is magical. We can communicate with our child with no words at all. If you are like me, you have learned every sound that your child makes and you know exactly what he wants from that sound.

Never give up hope! Continue to cling to hope because it’s what helps us get through our days. I understand how much you want your child to speak; I know how it feels to want something so badly that it hurts. However, until the day comes when we can hear our children’s voices, let’s be theirs for them.

Treasure the love you and your child share without words. It can be quite beautiful and amazing.

Love needs no words.

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To read more of Angela’s journey please visit her website or like her Facebook page.