Archive for Autism Joy

Be Aware of Autism

ProgtammingHopePosterI know April is Autism Awareness month, but I truly believe we should be aware of autism all year, in a positive and uplifting way. So this post I give you today will help everyone do just that. It includes a very personal video that I’m so happy to share with all of you.

You can go back and read any of the writings about my son, Kyle, in the archives of this blog. Just look over to the side or below for a menu of blog topics and click on AUTISM. Catch up a bit, if you haven’t already done so, that would be helpful. Even if you just read THIS ONE. You can also find that link near the autism ribbon under the archives list. It gives a good overview of our story.

Fast forward to today. Kyle, at almost 29, is working at nonPareil Institute. The movie, Programming Hope, a documentary film about nP, premiered back in February 2015, and FINALLY it will be available for everyone to watch at home starting April 2nd via Vimeo On Demand.

nP has even expanded from Plano and opened a second location in Houston! It’s an exciting time. They still need lots of support to make even more future growth possible, but they are working hard on all this. Please share our story and their story with everyone…visit nonPareil Institute’s Facebook page and share from there! We really need to get the word out there so everyone can be aware of autism in a future tense. It’s a business story as much as it’s an autism story. Anyone can benefit from hearing what is being done now to help adults on the spectrum and what’s on the horizon. It gets ideas and conversations started. It gets ideas and actions started, too.

Kyle’s Story

A little before the nP Houston location opened, I had the pleasure of hearing first hand, from several folks who were at their “open house” meeting, about my son’s “speech” which he made during that event. You see, he was asked to attend with Dan Selec and Gary Moore, the founders of nP…and that alone, was pretty exciting!

What many may not realize, was that Kyle actually was pretty nervous in the days leading up to traveling down there. He was going all by himself on a plane, since Dan and Gary were already down there attending an earlier event the night before. To Kyle, THIS trip was a big deal! He had flown before, but never alone. Having to navigate getting to and from places for the first time is always a topic of stress…add to that flying, and he just needed some reassurance. We discussed this by phone before he left. That’s typically how our relationship flows now that he’s an adult. He simply needs a little extra support and guidance, and we are his sounding board to help him make wise decisions…and of course, learn from his mistakes, which still can crop up.

After the Houston event was over I heard on Facebook about how well things went…he even posted wonderful pictures and updates during his short trip. Eventually, within a day or so, there were pictures posted on nonPareil – Houston’s Facebook page…and I was thrilled to learn that the documentary folks were down there, too, getting some final footage for the film…and luckily, Kyle’s speech was captured!

This makes us SO happy. He’s done something like this before, given a wonderful, moving testimony and we missed almost all of it. It was the evening of the final marching band competition his senior year of high school. Both my husband and I were busy doing band parent stuff, and I walked into the band hall at the tail end, heard his closing words, only to see kids and parents in tears and then applause. My husband missed it completely. Unfortunately, there was no good recording of it by anyone. We heard so much about it, though. We knew then that Kyle really had learned a sense of gratitude and that he valued his friends…and that he felt safe in band…and he really was worried about his future. It was scary to think he was going to leave his comfort behind after graduation, but we remained optimistic.

As expected, college was not the right fit for him, nor was working in food service. Neither made him happy or feel successful. Kyle learned to speak his emotions very well thanks to all the counseling and speech therapy we did with him through the years . He was taught to use his words once he gained a sufficient amount of them in his repertoire . Outbursts were not appropriate, not tolerated and we taught him other ways to let go of what he was feeling.

Years later, what you see here is the pay off. I never dreamed it would happen like this in a million years. Kids grow up. They learn what they are taught, over and over and over again. This is proof.

I’d like to share a more recent video, which includes my son’s speech at that open house in Houston, in the hope that it helps those parents that are struggling right now. Our journey was long…and I cried a lot…and we were very scared…but we just kept doing the best we knew how to do. I simply can’t thank both Dan and Gary enough for helping to create this moment, now…and for believing in my son…and a big thank you to Jack Creamer, the director of Programming Hope, for sharing that meaningful film clip and the other pictures with me.

I want all of you reading this to take a moment and please watch…and share it with anyone who might need to hope and inspiration…

 

 

Autism Awareness is more than statistics. Be aware of what is possible. Know that a great future can and will happen. Children grow up and there are people out there right now working very hard to make sure training programs and jobs will be available to individuals on the autism spectrum. Stay aware and keep learning about it…because time will pass in the blink of an eye!

Years ago, we had to forget our fear and just take it one day at a time. It ends up that it’s been a wild ride, but a great lesson to share…life will take you places that you can’t even realize. You’ll meet people through the years that will help connect the dots. So don’t sweat it so much right now while the kids are little…just enjoy them…smile more often…lighten up! Teach them to be kind..teach them love. Teach them right from wrong as best as you can.

Eight years ago, during a hot Texas summer, our son was the first student in a program we knew nothing about…but we took a leap of faith. Meeting someone randomly led this to happen…it wasn’t planned and we were not looking for it. See? You just never know!

My Message To You

Keep your focus on the love…the consistency…and laugh…don’t forget to laugh. I think I mentioned that twice. It’s worth repeating. Build your village of support…the right people are all out there, walking around each day…you’ll know when you meet them…and the village grows as your child grows up, with each new experience. SO, make sure your children have a have a TON of experiences…both good and bad, because there’s something to be taken away and learned from each of them along the way.

Things have a way of falling into place…worry and fear just make the journey more difficult, so surrender to faith.

aRound Autism Inspiration

If there’s one thing I am sure of, it’s my purpose on this earth…and you’ll be surprised to learn, it’s not teaching hoopdance. No, I have felt it in my heart even before I picked up a hoop.

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My mission while I’m still here, while I still have a chance to reach out, capture the eyes and ears of people who’ll listen, is to share a positive, hopeful message about raising a child on the autism spectrum. I strive to be a beacon of light for autism inspiration.

I get so busy in this hoop business that I do not talk about raising my children as much as I probably could, although I do from time to time. However, each April, I am reminded about what I need to do. This month is no different, and I have been preparing over the last few months…I am planning lots of goodness and hopeful, inspiring stories so please visit often to read my latest writings. In addition, I’ll be posting pictures and updates to my Facebook, Instagram, Twitter and uploading new video content to my YouTube channel. My personal Facebook album of my son’s journey over the last few years is a great place to start learning why I am so very passionate about helping parents stay joyful in a storm.

KYLE Programming Hope

Just this year so far, we have experienced a great deal of hope and joy surrounding our youngest son, Kyle. If you are someone who’s been following our story for awhile, then you know about the documentary, Programming Hope, from my earlier posts. Just a few weeks ago, in February, the movie about nonPareil Institute premiered! It’s been amazing to see the journey documented in such a powerful medium. From the beginning, when my son was the first “test” student, until today, where he’s an instructor teaching other adults on the spectrum…this is a blessing that we never dreamed as possible back when Kyle was 3 years old, I assure you.

 

 

Tomorrow, April 2nd, is Autism Awareness Day. Get really inspired by taking a VIRTUAL TOUR of NonPareil Institute via Tivamo…and watch this recent little video showing what is possible for the future of autism in the world…video games and apps…putting autism to work is what nP is all about…well, that and a living true mission of love blended in a technology driven society.

I am truly grateful and simply have to share with everyone the message that autism does not mean THE END. It is a beautiful BEGINNING if you approach it with the right mindset and an open heart, willing to take risks, chances and believe that there is goodness out there…the right connections will happen and change will take place…dreams CAN and will rise…and so will JOY!

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Remember, about 24 years ago, we just got Kyle’s diagnosis…moderate-to-severe autism. I never thought any of THIS was possible back then. I had such a hopeless outlook. If things can change for us over the years, then it is possible for ANYONE…I look forward to sharing more and more….

 

aRound Autism: the LAUGHTER

I pulled a box out of the closet and opened it. All the memorabilia from my children’s school years…my journey as a mom and all it’s feelings came flooding back. I own each and every morsel of those feelings, too. I loved my boys back then…but most days, I really did NOT find joy in being a mom…it was SO, so hard.

1533787_10152272639211117_1804037467_n(click on some of the pictures to be taken to my aRound Parenting Joy photo album; you do not even need to have a Facebook to see the album…I’ll be adding more, so check back occasionally, too…)

I could write about all the trials and struggles of raising a child on the autism spectrum, but WHY? There’s enough of that to read all over the internet. We all know there is. When you “join the club” of parenting a kid with any disability, from mild to severe, it’s going to be a REAL intense journey. Wait, let me take that back! PARENTING ANY CHILD IS AN INTENSE JOURNEY. If parenting was “exercise” (actually, it IS!!), then having a child with a developmental and communication disorder or any learning differences, let’s just say that makes it “higher cardio”…”extra weight” added to really BUILD those parenting muscles!

Maybe I can just slightly give you a quick overview…like I can remind you that we forgot about HAVING A LIFE outside of devoting every once of your energy to helping our child. Besides having our youngest son diagnosed with autism, we also had the extreme pleasure of having an older child diagnosed with Attention Deficit Hyperactivity Disorder at the SAME TIME. Finding babysitters was NOT a reality in our world. RESPITE CARE was, but it was far and few between, since we had to get it from the county, and it was only allowed every so often. That’s right, we qualified for county assistance to get some program help. Looked for every sliding-scale thing we could. How about the fact that we had to get family counseling,  go to play therapy, attend doctor visits and seminars…all this instead of going out to dinner or eating even fast food.  My oldest ADHD son spent more time in the principals office than the classroom…more hours in time-out than playinig. Our youngest autistic son spent more time with objects than people. He was content, don’t get me wrong, but I longed for him to look in my eyes and TALK to me…PUT WORDS TOGETHER…SAY I LOVE YOU…would he EVER engage more with us or with the WORLD??? Would my oldest son actually live through his teen years? Would he end up in prison? Would EITHER of them be able to attend regular high school, much less college? EVERY DAY WAS EMOTIONAL! Fighting, screaming (why we got therapy and learned skills to cope)…I wondered what it would be like to have a child that could sit down and do homework? What was it like to have a child that didn’t get separated from the class constantly? BOTH my children were picked on by other kids on the playground or walking home, but that really didn’t bother me. I knew my kids were going to be OK…and WHY??! We showed them how to LOVE even when it’s really hard (after all, that WAS what we were doing with them, and we reminded them!)…we taught them to control THEMSELVES…we modeled for them how to CARE about others and help others, to be kind…and MOST important, we taught theKyle43m early about LAUGHTER.

Yep. A sense of humor helped balance ALL this stuff out. As much as we had to dish out consistent parenting (I mean we were like a boot camp!), we always found a way to make it end in giggles after the serious stuff was dealt with. Sometimes we would double over in crying laughter. If they were having a bad day, we’d use something fun as a diversion. PRAISE them up & down…FINDING something to praise them about. Laughing at things that were ironic and being sarcastic. NEVER FORGET that ADHD & autism kids can say & do THE CUTEST and FUNNIEST THINGS! THAT is a HUGE gift and such joy! SO we USED this to our advantage! Our kids probably had a more keen sense of humor than most kids around them…quite honestly, I think it was like a layer of armor for them and us, as well.

I love my boys even more today than back then. It’s all about perspective…I didn’t think I could love them any more than I did when they were little. Then they grow up to be amazing adults…and it’s a whole NEW feeling. Our laughter today is EVEN MORE meaningful…because we look back and can laugh at stuff we ALL went through together. NOW we experience REAL joy together…and I NEVER even DREAMED that would happen when I used to lay awake at night, having my parenting pity-party back twenty’something years ago! I wasted SO much time worrying and whining in my head! (OK, I did it out loud, too, but it was ALWAYS with a sense of humor!)

I challenge you to look for LOTS of opportunities to LAUGH in WHATEVER situation you are in. Do you ever do that? Has it helped? Parenting, marriage, family, friendships, work relationships, community involvement…maybe things are not optimal or ideal, but you DO what you gots to DO to get by. Lighten the situation by looking at it with a new angle, one you can laugh at for a bit. Helps add joy now…and I have discovered it helps with joy YEARS later!

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aRound Autism Joy

If you randomly met me on the street, you’d never know I was the mother of a son with autism. You see, my son, Kyle, is a grown adult. He’s living and working on his own, with very minimal assistance, pretty much independently. He loves what he’s doing and is passionate about his work, his studies, his hobbies and his friends. He’s successful, too. Amazingly, all of these things are blended beautifully in his life today.

Now, if you would have asked me twenty-two years ago if I thought Kyle would be living on his own as an adult, my answer would have been “no.” It really makes me feel awful to admit that right now, but I remember feeling overwhelmed and unsure about his future. He was a young child labeled with a developmental disorder that we only could associate with the movie RAINMAN. That was a lot to handle, the very thought of it made me cry often and it all certainly put a big question mark on what he could achieve in his life.

Kyle was diagnosed with moderate to severe autism on his 3rd birthday. Not exactly the ideal present we had hoped for. We went ahead and continued our plans for the evening, having a small party for a few close friends and family members. We didn’t let anything stop us from celebrating Kyle and enjoying the moment. Even though he seemed uninterested, we still followed through with our day, just as if we had never heard the word “autism.” We did that each and every day from that day forward, and have not stopped doing things that way ever since.

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Despite his reactions, or lack of reactions, with each experience we just kept on doing things, without excuses. From that very first day, this is how we lived with this autism thing – never letting it hold us back – never letting it get in the way. I only need to look at all the pictures I took to be reminded of what I know deep in my heart: we raised both of our boys with love, laughter and consistency. That’s not to say the road was always easy. There were several times I thought we just would never make it.

I’m not going to write about all Kyle’s symptoms and behaviors but I can tell you about a few. He had many sensory issues (clothing and food texture issues, sensitive to noise) and also enjoyed rocking back and forth on the floor. He could not put two words together at the age of three, yet he could read sentences and repeat back TV commercials verbatim (plus, sing the cute jingles perfectly)! He lined up Hot Wheels cars all over the house, but had no idea how to roll them on the tracks, nor did he try or care to (even when we showed him how fun it was to watch them go fast). When we traveled in our car, he screamed like a maniac if we turned right instead of left, or left instead of right, depending on the intersection. I think you get the idea.

Kyle didn’t put two words together until close to age four. He wasn’t completely potty trained until close to age five. His outbursts due to frustration were numerous. Each day certainly had its challenges. I think it is important to note that we also had another son three years older than Kyle who had ADHD. Yes, there were days I cried. I thought I couldn’t take it any longer. I would ask God, “Why? Why would you give me these two challenging boys?” Then I would remember the saying about how God never gives you more than you can handle. So, that would make me giggle to myself. Honestly, it was a sense of humor that helped us get through all those early years of parenting. We took every situation and tried to find something funny to help lighten the load. This is still how we handle things today, actually! Laughter and autism…yes, that combination really helped ease things on the bad days. Lots of laughter, we did have a good dose of that. We still do, too.

Make no mistake…we also got professional help, and lots of it! We went to family counseling and got parent training. Even our boys went to therapeutic play groups and summer camps for years. That’s how we all learned the consistency thing. Time out became as involuntary as breathing. Yet, even through the toughest of times, we were able to keep smiling. I don’t think it’s any coincidence that the very first thing Kyle was able to draw was a smiley face. That’s a testament to the way his life began, the way he continues to live today. Despite the challenges, he’s continued on (with our support) and remained happy.

We discovered that Kyle was gifted in music when he was five years old. Frankly, that is what got him through 12 years of school. We started him in piano lessons to help with his dexterity. It was just that simple. I thought of it as a therapeutic tool.

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Kyle had trouble holding a pencil or crayon correctly, so therapists suggested occupational therapy. We noticed that his computer keyboarding skills were developing well at a very young age, which was another task that helped to build his fine motor skills, we thought, he found handwriting too difficult. About the same time, we noticed he loved playing with the electronic keyboards at Best Buy. That, and he also hummed tunes quite a bit, especially familiar ones from TV shows, cartoons and especially his brother’s video games. It made sense to us that piano lessons could help strengthen his hands, since it involved the fingers and since he seemed to really enjoy music, he’d feel more at home doing it as opposed to some other therapy. We were indeed going down the right path when we chose the piano lessons. His teacher discovered he had perfect pitch by his second lesson (yes, at age 5). By his senior year, Kyle made first chair percussionist in All-City Band. He even received a music scholarship from University of Texas at Arlington in addition to other scholarships to help him with his post-high school education.

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Unfortunately, college was less structured than high school, so this became a struggle and he had a hard time keeping up with the demands. We decided after one year of college, it was time for him to try working full time. He had held a part time grocery store position as a sacker in high school, so we thought he could turn it into a career. He could work hard and advance. But, working full time became a real challenge for Kyle. It was hard dealing with different people, longer hours surrounded by constantly changing personalities and comments. This made his days more and more uncomfortable. His escape was to come home and play his video games all day. This became the routine and how he managed his stress somewhat. You can imagine our reaction to this, however. I must say, we found it harder to find the humor in his behavior at age 21 than we did when he was younger! We were frustrated and so was he. What would his future be now? He was having a hard time keeping a job, an even harder time finding a new one when he did get fired, his self -esteem was getting lower and video games seemed like the only thing that brought him pleasure.

So, to help him understand his struggles, and to help us learn some strategies, we decided to attend a Future Horizons autism conference in the summer of 2009. While there, during one of our breaks, we were approached by another attendee and learned about a new non-profit organization that was forming. After the conference ended for the day, we met briefly with one of the gentlemen who was starting nonPareil Institute in Plano, Texas. As he told us about his vision and plan for the company, we sat there amazed. We could not believe what we were hearing; nonPareil Institute was to become a non-profit video game development company, a technology training program for adults with autism, where they would train, work and eventually live on a campus. They needed to find a few initial students they could attempt to train, to see if indeed this vision was something viable. We left that meeting and drove back to Arlington. It sounded like a dream to Kyle, and it definitely fit him perfectly. Could this actually be something that could grow and become a reality? Should we take the chance and let him become the FIRST student? Well, the answer to both of those questions is YES!

Today, almost 5 years later, nonPareil has grown to training about 140 individuals. My son, who started there alone, is now a full time instructor, teaching many other autistic adults video game design and programming. The company itself has been featured on both local and national news, most recently on NBC and CNN, plus an article just appeared in Family Circle magazine. Last year, there was a VERY successful KICKSTARTER project to raise funding for the full length documentary about this inspiring company. It is called Programming Hope, and it’s expected release date is within the next year. Go ahead and start sharing the news and pass this blog post on to those you know who need to hear this…every share would certainly go a long way in helping everyone become aware of how life can and WILL be for adults on the spectrum. The movie will be amazing. My family, our son and others like us will also be featured, as well as the story of the company’s founders, Dan Selec and Gary Moore. We couldn’t be more proud of nonPareil Institute and our son!

We are certainly glad that we attended the autism conference that day, but Kyle’s journey is not the only reason! There’s more to my story!

A few months prior to attending that conference, I had started my own personal journey. I was turning an active passion and hobby of mine into a business. I created my own company, aRoundJoy, where I began teaching hoop fitness to adults at my warehouse studio, The HoopShack, in Arlington, Texas. As I began to teach & share more about hooping with others, I discovered it was helping not only myself, but so many other types of individuals, on multiple levels. There was so much more about this circular movement than simply one could see. As someone with some firsthand experience dealing with autism, one connection spoke loud and clear to me: parents, teachers, therapists and even autistic individuals themselves can benefit from hooping! The hoop can be so calming and relaxing, it reduces stress, plus generates joy and laughter, too! It is definitely repetitious, and the spinning is a great way to get a child to engage with you. Hooping can be done in groups, but it is a GREAT individual activity, providing a physical release & wonderful physical exercise. It’s a nice way to get in more movement each day for overall well-being, but in a really fun & positive way. It’s not just boring exercise! Bottom line, hooping makes people happy, and we all can use some of that!

As I sat in the front row at the autism conference that day, on the very same day we learned about nonPareil Institute, all these thoughts began to swirl in my head about how the hoop could help the autism community! I began to imagine larger events where I could share this information with everyone. I would work on that, I thought. I would grow my business and make connections in my local area, so that someday I could find a place to bring hoop awareness to more people in one place. Since that conference day, over the last four years, I also have grown my company and have hosted events for autism awareness. My son and I have given talks to parent groups at schools. I have made invaluable connections in my local community, and hope to work with even more non-profits in the future, allowing me to help show others how the hoop can help their families. For some it’s about weight loss & getting active, but for many, it simply is a way to “connect” and “engage” in a playful way.

The more people I meet and teach, the more I connect with individuals and families who know all too well about autism. I am able to share with them my story. I am able to help them with some advice, some tips, some tools to help them cope or just listen and understand. All this developed over time. I didn’t start hooping or even my business, for that matter, with these goals in mind. Everything has simply evolved that way. My path has been open, and I have allowed it to roam where I am needed and wanted. Good things are on the horizon for the future.

I know my purpose…now…my “why”…my “why me”…God always gets it right.

autism…laughter…joy…

hooping…laughter…joy…

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AROUND JOY…yes, I truly am.

 

 

 

 

 

 

aRound Autism Awareness and JOY

April is Autism Awareness Month, one of my favorite times of the year. In the past I have had hooping events to promote awareness. This year, however, I will be sharing more of my family’s personal story aRound autism, writing more blog posts and showing you more pictures from our lives. As many of you know, my youngest son, Kyle, is on the spectrum, diagnosed at the age of 3 with moderate-to-severe autism. Many of you reading this, as well, might be surprised by this, because you have met him in person or feel like you know him via pictures I proudly post on Facebook. Perhaps you know what he is doing now with nonPareil Institute at the age of almost 26 and are pretty surprised he was ever “moderate-to-severe,” so that’s what I want to explain more about. Our journey was not easy, but we did the best we could with what we had available. It’s high time I start getting busy sharing hope to other families out there. It’s a mission so close to my heart that I will be spending more time doing this from now on, even once April has passed.

If you haven’t already heard the news recently, you will begin to hear the staggering statistics about autism once again, since it’s April. Every year about this time, we are reminded. It’s alarming and concerning how many children are getting diagnosed. The media surrounding all this is anything but hopeful. It makes me sad for the families out there, just like we were years ago. Lost, sad, wondering, hungry for any morsel of information on autism other than the movie RAINMAN. We didn’t have all the doom and gloom being plastered in front of us on the TV news, though. Occasionally, it was in magazines, like TIME and NEWSWEEK, but even then, it was sporadic. So we were left to just listen to our gut instincts. That’s what we did. They say “ignorance is bliss”…in our case, I am so very grateful we didn’t have access to very much back then. It made choices easier…we had to take a chance on some things many times because it was the only choice at the time anyway! “Less is more” really applied.

I look forward to writing more in this month and beyond. Look for my posts over on my Facebook. Be sure to share all this information with friends and family who might need some encouragement when dealing with autism. Unfortunately, the numbers of cases being diagnosed is now 1 in 68 children, which means chances are likely if you are reading this right now, you know a family dealing with autism. Encourage…help…inform…

Please share our family’s story with others, remember to to stay joyful about autism and help others do the same. I, more than anyone, know that it is HARD to “put on a happy face” when living in the shadow of autism. I wasn’t always happy and smiling when my kids were little, I can assure you. I was DOWN and sad…A LOT. I know now that I wished I had been happier sooner, but point is, I did get happier over time. All I can do is try to help some other parents and family members…at least by sharing more openly, it might help someone shift from only thinking about the negative things surrounding autism. Good things CAN happen and DO happen. Read a summary of our story HERE.

I’ll leave you with a couple of videos, one is a look back and the other was from an awards ceremony a few weeks ago. I’ll also share a couple of quotes. You can see how far my son has come, where he is going and how joyful the future CAN be for autism. There’s a frontier being explored and pioneers blazing a path. Stay tuned for lots more stories and information!

 

 

 

Comment from a friend,  Jared Latimer:

“I think nonPareil is awesome. I personally do not believe we as a society treat Autism, ADD, or ADHD (thought they are different), appropriately. I think each one offers gifts, talents, and abilities that appropriately utilized can be great assets. Instead of trying to ‘treat’ we should teach on how to use. Just as the article mentions autistic workers can thrive in high tech jobs, ADD and ADHD people can thrive in creative jobs (think Pixar). I think nonPareil Institute is on the right track. Imagine what this world would be if we found benefits to various “disabilities” and focused on maximizing and harnessing those instead of trying to ‘treat’ the differences.”

YouTube video comment:

Ma’am, your son Kyle is my instructor at nonPareil Institute. He works harder than anyone I’ve ever met at that age. He’s helped me in ways that no college teacher ever could. I am very happy to have him as an instructor, just as you are very proud to have him as a son.