September was a tricky month. Starting a new school year is always exciting, bringing so much change, new experiences and unexpected events. The transition into this school year has been tough for all of us, much harder than anticipated, and worrisome. You see, I can't get into my son's brain and he can't yet find the words to explain, so I devour every video and article written by an adult who was once like him, and it helps me understand. I will never feel what he feels, but I can certainly try to understand so I can be as supportive as possible. Sometimes I ask too much of him. It's so hard to find the balance between understanding and pushing just enough out of his comfort zone to experience something new and grow. Articles like these help me remember that on some days, he's doing the best he can just by walking out our door in the morning. I pray for the strength and the wisdom to support him as best as I can... I hope this article is as enlightening to you as I found it to be for me!
DC
Click on the link below:

http://www.huffingtonpost.com/entry/how-autism-impacts-my-life-in-ways-you-cant-see_us_57f18064e4b0972364deb7b5

How Autism Impacts My Life In Ways You Can’t See

You won’t see tons of pictures of me out with family and friends on social media.

10/02/2016 06:02 pm ET

Dr. Lamar Hardwick Husband, father, pastor, author, autism advocate

On Friday, Sept. 9, I woke up without peripheral vision. As I struggled to get our kids ready for school, I silently thought to myself, “I can’t see.”

I knew what that meant. It wasn’t a first-time experience. It was an impending migraine. I took my medication and went back to bed, but despite the fact that the medication rids me of my migraines pretty rapidly, I still only managed to leave my bed twice that day.

You see, on Thursday I drove to Birmingham, Alabama, to attend a one-day conference. It was exciting. It was inspiring. I learned a lot. I got a chance to spend time with an extraordinary young man I am mentoring. It was all worth it, but in the back of my mind I knew I would pay the price. This is the ASD (autism spectrum disorder) I live with.

Social anxiety and sensory processing issues are a huge part of my experience. The way autism affects those who live with it is as vast as the personalities of the people themselves. My life with autism isn’t going to look like the life of the other person you know with autism. In fact, if you’re secretly looking for anything that would indicate I am on the spectrum, I would say that you most likely won’t see anything at all.

Sometimes understanding how autism affects me can only be found in what you don’t see.

Let me explain.
What you don’t see is me leaving my home much beyond work, church, and trips to the gym. You won’t see tons of pictures of me out with family and friends on social media.

You won’t see me at the football game or the concert that everyone is going to. You often won’t see me hanging out at the mall or at an amusement park. You won’t always see me at the Memorial Day, Labor Day, or Independence Day cookouts and fireworks shows. I love all of those events and environments, but the reality I live with is that I am often forced to choose very carefully how I spend my time and my sensory resources.

Perhaps that’s why when you see me, I appear to be fine. What you think you see is someone not affected by autism, when in reality what you see is someone who has given up dozens of opportunities to leave home so I can be seen in the few places you always see me. What you don’t see is how much I prepare and how much I pray. Preparation and prayer for most people is something they do when they take an exam.

For me, preparation and prayer is what I have to do just to exit my home.

Every day I spend hours preparing to encounter a world that my brain isn’t built for, and I pray for the grace, courage, and strength to manage it successfully. When you see that I’m doing fine, just know that fine is a short distance between not being able to get out of bed on a Friday and being able to speak in front of hundreds of people on Sunday morning. 

Fine is a short distance between failure and faith and fatigue and focus. Like a smartphone app stuck in refresh mode, my brain is constantly searching for data, taking in the sights, sounds, and smells using up all of my precious data, and the end result is always a drained battery that leaves me with just enough physical energy to climb out of bed to use the restroom.

That’s what you don’t see, but let me tell you what you do see:

What you see is a warrior. Despite my difficulties with sensory processing and social anxiety what you don’t see is someone who is weak. I am strong. I am a fighter. I am a gladiator.

Like the athletes who grace the gridiron on Saturdays and Sundays playing the great sport of football, my life is the perfect blend between beauty and brutality and between grace and grit.
What you see is a gift given to me by God. A gift to persevere. A gift to overcome. A gift to inspire. What you see is a talent for transforming life’s toughest moments into life’s most teachable moments.
My life on the spectrum showcases the strength of the human spirit. My challenges haven’t defined me; rather, I have publicly defied the odds that have been stacked against me.
What you see is God using the stage of my struggles as a platform to showcase a divine strength. A strength that is so other worldly that it actually makes my life look easy. 

What you see is the grace to learn how to be less of a taker and more of a giver.

Life on the spectrum may have taken parts of me, but rather than responding by becoming a victim and a taker, it has motivated me not to take things for granted but to take chances, take risks, take opportunities, take charge, and to take a stand, and by taking these things I have in return been given the grace to give the world the best of me.

To all of my awesome autism warriors, keep fighting the good fight. We see you!
A version of this post appears on autismpastor.com

 

That Elusive Happy Place

Sometimes life is just easier when your friends are toy dinosaurs and cartoon characters who go on grand imaginary adventures with you. You are in full control, everything is predictable, colorful and stimulating (but not over-stimulating) as you replay the same adventure over and over in your mind. It's safe. It's your happy place!

The real world is a cruel and scary place. Maybe autism is a self-preserving defense mechanism. Don't we all wish we could live inside our heads in the most wonderful imaginary world most of the time instead of dealing with the real world??? We all wish it sometimes. We just don't say it. And that's the beauty of autism: most of the time you just don't care what other people think because you do what makes you happy. No one should be forced into NOT wanting to be happy!

So let's meet our loved ones where they're at: get down on the floor with them and try to ease into this wonderful place they've created. Find ways to bridge their world and ours. Help them find joy and happiness in the real world. Sometimes I worry that the rabbit hole is just so much nicer, why come out? But if we don't draw them out, what then??? It's a scary path I don't like to venture into inside my own mind. If only we could get a glimpse of what our loved ones see...maybe we wouldn't want to come back to the real world, either. In the HBO series and best selling books Game of Thrones, there's a character named Bran. He learns that he has a gift of being able to "leave" his body and enter different worlds, times and places (or the same world through another's perspective) but it comes with the cost of losing the ones he loves...the longer he stays "outside" of his body, the greater the chance that he won't be able to come back to reality. I do believe so much of autism is a gift, but often at the cost of the ones we love, or at least the connections to the ones we love. The longer they stay in their imaginary world, the less they want to be in the real world and the more isolated they become. So it's up to us to help this world be a fun and adventurous place to live.

Autism is enigmatic, mysterious. How can they love a toy dinosaur more than members of their own family? What I wouldn't give to be the toy dinosaur for a day, a moment, a second, and feel that deep love. To feel that ecstatic joy that brings on bouts of uncontrollable belly laughter until you drool...what I wouldn't give to feel that connection, share that joy and understand. THAT would be my happy place: connected by the common love and pure essence of joy in that moment, and to hold on to that memory forever. The memory of sharing that secret happy place!

This is a hard road. No joke! Remember to look out for each other: other parents on this journey who may be struggling, too. We are all joined together by autism. Let's stick together for peace's sake!

Blessings!
DC

I'm BAAAAACK!!!!

Incredible to think how long I've been away. Shortly after my last post in December, 2014 our lives imploded. I can't go into detail, but let's just say now we're on the other side of the volcano... a little burnt from the process, but all in one piece. What's changed since I last posted?

1. We sold our home and relocated.
2. Our little man started at a new school.
3. We mastered bike riding without training wheels!
4. We mastered swimming!!
5. We went from full inclusion to substantially separate back to inclusion again.
6. We're still searching for a new church family
7. I have a whole new administrative team at work... I outlasted everyone!!! 
8. Life is good!

So, here's where the blog is going: continue to be a resource for families, take a more secular tone to be more inclusive of other families, include more OT-related information, I will no longer self-disclose personal information about our family or our son... because it's his life for HIM to share. Not mine...

Well, hope to get some of you all back on board and working together to find peace in the autism puzzle.

Blessings!
DC

Autism-friendly Santa!

I just LOVE Kerry Magro!!!!! Don't let ASD keep you from important family traditions. There are many "sensory friendly" Santa events nation-wide. I hope this motivates you to get out there and try something new... And please scroll all the way down to learn more about Kerry and his wonderful work for autism awareness and acceptance!
Be well and blessings!
DC

Children with Autism to Meet a Santa with Autism

Posted: 03 Dec 2014 10:30 AM PST

Autism Speaks Staffer Kerry Magro shares why he will be playing the role of Santa Claus for children with autism this holiday season in New Jersey...

This guest blog is by Autism Speaks Staffer Kerry Magro. Kerry is an award winning national speaker who is on the autism spectrum.


I remember the first time I ever saw Santa. It was during the holiday season when my parents had taken me out to do some Christmas shopping at our local mall. I was a five-year-old, just newly diagnosed and I was completely terrified. I remember the loud music, the crowded lines and the overload I was feeling. I can still remember what upset me most. We left before I could meet Santa. I had no picture with Santa because I was completely overwhelmed and we had to leave.
Today I’m hoping to give children with autism the opportunity to do something I didn’t have the chance to do as a kid.

That’s why I decided to start an Autism-Friendly Day for our community as part of a four day Santa Elf Factory event in New Jersey to give children with autism the chance to meet Santa in a sensory-friendly environment. I got the idea when I was 18 and we did a toy drive for some inner city youth in Paterson. Some of these individuals had special needs and I took on the part of Santa Claus for the day. Seeing the kid’s reactions was something that truly has left a lasting impact on me to this day. One of the best memories I had was when a four-year-old girl named Tiffany came up to me and said “I Love you Santa” and gave me a hug. I had to fight back tears as I gave her a Bob the Builder bulldozer. This was one of the cutest and most special moments of in my life.
A year later I had started college and my road to becoming an autism advocate. During college was one of the first times I ever told anyone that I was on the autism spectrum. Now at the age of 26 I’m using my work in the field to yet again take on the role of Santa; now for these children with autism. The response from our community since we announced the event has blown me away. Several parents have contacted me via Facebook saying how this will be the first time their child ever gets to meet Santa.
THIS is what it’s all about. So many children with autism have to work day and night to get through school, early intervention, therapies, you name it. During this holiday season these kids deserve the opportunity to have some time to enjoy themselves in a safe and nurtured environment. If I can give even one of these kids and their families the feeling of joy and happiness the event will have been well worth the time we’ve been putting into it.
While we hope to give back during this holiday season to make an impact for these kids we are also hoping this will start an even bigger conversation on getting autism-friendly Santa events for families who want them across the country. Autism Speaks is helping out with this now through their partnership with Simon Malls where 120 of their malls will be participating in autism-friendly events for our community.

I hope for those reading this that you will share this blog with your communities, local media outlets, newspapers, websites, social media etc. as we spread awareness for autism-friendly holiday events that can make a lasting impact in the lives of countless children.
When I was diagnosed, the numbers of autism were 1 in 1000. Today it’s 1 in 68 with 3 million individuals having autism in the U.S and 70 million worldwide.
Let’s spread some cheer for our community this season so we can make autism a part of that conversation for all our families and giving them a very very special holiday season.

Now it’s time to stock up on milk and cookies to prepare for the big day! Happy Holidays! :) Kerry is hosting an Autism-Friendly Day @ Santa’s Elf Factory sponsored by JC Funraisers LLC being held at Tommy 2 Scoops 177 York St Jersey City, New Jersey on Saturday, December 13^th from 10 AM to 5 PM for 70 autism families. Spots are going fast so reserve your spot TODAY here. A portion of the proceeds from this event will help provide scholarships for adults with autism to attend college. 
Autism Speaks is partnering with Simon Property Group, Inc. and the Noerr Programs Corporation on their Caring Santa program! Learn more to see if your local Simon Mall is participating here.



Here are more of my earlier posts about Kerry:
http://findingpeaceinthepuzzle.blogspot.com/2013/10/hi-all-i-am-reposting-this-great.html
http://findingpeaceinthepuzzle.blogspot.com/2013/07/thank-you-kerry-magro.html
http://findingpeaceinthepuzzle.blogspot.com/2012/12/an-award-strange-pizza-and-new-guiding.html
http://findingpeaceinthepuzzle.blogspot.com/2012/08/star-struck.html

Please consider donating to his non-profit organization, which awards scholarships to young adults with ASD seeking a secondary education: http://kerrymagro.com/about/

Autism and the Holidays! (cue the chorus of groans!)

"It's the Most Wonderful Time of the year!!!"... or so the song goes. But not so much for too  many of our families and loved ones with ASD. This next month I will post several different resources to help us all prepare (and survive) the Holiday season and make it as enjoyable for our loved ones with ASD. Here is a wonderful article I found on the website for Bradley Hospital in Rhode Island. Not too wordy, just right for us on the run! Bookmark the site so you can read it at work or while your kids are sleeping: http://www.bradleyhospital.org/parenting-resources/autism-and-the-holidays.html
Be well and be blessed!
DC

• Autism and the Holidays: Sensory Overload

• The hustle and bustle of the holidays can be especially stressful for children who have autism.

  From last-minute shopping trips to holiday parties and family gatherings, the holiday season is often a stressful time for parents.  But for children with autism spectrum disorder who rely on structure and routine, the hustle and bustle of the holidays can be extremely unsettling, according to experts from Bradley Hospital.
  This is particularly true for children who also have sensory processing issues and may be overwhelmed by the overabundance of lights, sights, sounds and smells during the holidays. This distress can often impact the entire family.
  Maintaining the current structure and routine for your child may not always be possible during the holidays, but there are ways to help reduce your child's anxiety while increasing your family's enjoyment of the holiday season, say experts from the Center for Autism and Developmental Disabilities at Bradley Hospital.
  
  The key to preparing for the inevitable changes that come with the holidays is to provide your child with early cues of what will be taking place. For some, this might require depicting with words or pictures exactly what will and will not occur at each event.
  The following tips can make the holidays more fun for everyone involved:
  

  • Visiting If you will be visiting relatives or friends, let the child know in advance where you are going, who will be there when you arrive, what you will do when you are there and the time you plan to arrive and leave. Follow the same protocol if relatives or friends will be visiting your home. Parents may also want to ensure that a quiet area has been identified where the child with autism can go and relax if the activities become too overwhelming.
     
  • Holiday shopping Holiday shopping with a child who has autism spectrum disorder may present its own set of challenges, especially when the stores are crowded and noisy. Make a list that identifies the items you're shopping for and do not roam the stores trying to decide what to buy. Keeping the trip short and being organized will help minimize the potential for the child to become overwhelmed and have a "meltdown" in the middle of a store.
     
  • Decorations Holiday decorations inside the house--including bright and blinking lights, wreaths, trees, candles and stacks of presents --could be areas of concern.  Parents know best what their child with autism enjoys and at what point things may become overwhelming. However, parents should not expect that their child has a higher tolerance simply because it's the holiday season.
     
  • Preparing siblings Since the holidays are a time for the whole family to enjoy, it's important to make siblings aware of how stressful this season can be for their brother or sister with autism. Before the holiday season begins, take the time to remind children of their sibling's sensory issues, communication difficulties, low frustration tolerance and likes and dislikes. Parents can then share the family's strategy for avoiding potential issues and discuss what they will do if their best efforts are unsuccessful.

  
  We often put pressure on ourselves to make the holidays perfect, which is unrealistic. In the end, the most important thing to remember is that the holidays are a time to cherish one another and the joy of being together. Whether it's scaling back or starting new traditions, celebrate in a way that makes the most sense for your family and is something that you, your child and the entire family will all enjoy.
  For more information about Bradley Hospital's Center for Autism and Developmental Disabilities, please visit: http://www.lifespan.org/bradley/services/ddp/default.htm

Superflex and the Unthinkables!

It's no secret that my little guy is terrified of Halloween. He is terrified of costumes and strangers; put the two together and it's sheer panic! Coincidentally, this week at school he was introduced to a superhero character named Superflex. He is part of the Social Thinking curriculum and has been a godsend for my little man! You see, my little guy has been having a very hard time at school (surprise!). But the thing that's been so hard is not school itself, it's feeling so remorseful and responsible when things don't go well. He's somehow internalized that this is all his fault (sound familiar?)... enter Superflex and his team of Unthinkables! Superflex is the hero inside your brain who defeats the Unthinkable villains who are making your brain do things that aren't helpful, like getting stuck, being rigid, etc. I'm not doing this justice, so here's where you can learn more: https://www.socialthinking.com/books-products/products-by-age-range/grades-3-5/superflex-a-superhero-social-thinking-curriculum-package-detail

Here's what is so fantastic: my little guy's private speech therapist knows all about Superflex. We had OT and speech on Halloween and were ready to have to cancel because of the costumes, etc. Well, his speech therapist came up with the idea to dress up as Superflex at the clinic and try to conquer his fear! HOW AWESOME WAS THAT?!?!?! It worked! He went and even put on the cape! So...I had to introduce all my readers to this awesome character and give you guys a great little visual handout I found on Pinterest. As always, I will cite my sources. This is Superflex right from the Social Thinking website (link listed above):

And here is the awesome visual to help kids think flexibly:

for the original, go to: http://lunchbuddiesplus.wordpress.com/?s=flexible+thinking&submit=Go

I also found a great resource where all the Superflex Unthinkable characters are listed with illustrations in color and written descriptions. I hope you all enjoy these: srsp.weebly.com/uploads/7/2/4/4/7244139/appendix_b_-_cards.pdf

And, as always, feel free to follow my Autism page on Pinterest, where you can find great resources and links: http://www.pinterest.com/dlcot/autism/

Have a blessed weekend and be well!
DC

Triggers of Behavior in Children with Autism

Hello all! Here's another great visual that I think every single person who has a loved one with ASD should have AND share with their teachers, caregivers, family members... EVERYONE! I can't seem to find the original source, even by doing an extensive search online, so I will post the link to Pinterest, where I found it originally. Seriously, pass it on!!! The more people understand these small changes they can make or situations they can avoid, the easier it will be for our loved ones to be included in this world!
Blessings!
DC

Since it's not about me...

Great article shared by a friend: first hand perspective of church going for an adult with ASD. Truly eye opening!

Blessings!
DC

'Mr. Spock goes to church':  How one Christian copes with Asperger's syndrome

Brant Hansen, a host on Christian radio, says his Asperger's syndrome once made him feel like an alien at church. October 19th, 2013 10:28 AM ET

'Mr. Spock goes to church': How one Christian copes with Asperger's syndrome

Opinion by Brant Hansen, special to CNN (CNN) – In the book “Jim and Caspar Go to Church,” an atheist turns to a Christian minister as they're watching a Sunday morning church service and earnestly asks, "Is this what Jesus told you guys to do?" I've grown up in churches and I'm a Christian, and I'm right there with the atheist. I honestly don't get the connection. (To be fair, I've grown up on Earth, too, and there are times that I don't understand any part of this place.) You see, years ago, I was diagnosed with Asperger's syndrome - and like a lot of "Aspies," sometimes I'm convinced that I've landed on the wrong planet. For those of you who don't know the medical lingo, Asperger's syndrome is an autism spectrum disorder, but not as severe as what most people think of as autism. It basically comes down to this: those "normal human" rules for things like eye contact, when to smile, personal distance - we just don't get them. What's more, Aspies like me don't like those rules. They make no sense to us. So usually, we just say stuff - bluntly - and stare uncomfortably at the ground. That's how we roll. But it gets even trickier for people of faith like me. Feeling out of place at work is one thing. Feeling like an alien at church is a whole other matter. Imagine Mr. Spock at an evangelical Christian tent revival, and you’ll get the idea. And my father is a pastor, so I was in church a lot. Multiple times, each week, every week, I found myself wishing I'd be moved by the worship music, or that I could shut off my skeptical mind during the sermons. I'd see people in church services, Christian concerts and Bible camps overcome by emotion and enraptured with charismatic speakers, and I wondered why I didn't feel that way. Why did I always feel like a cold observer? After going to college, I was convinced my lack of feeling meant I was missing something, spiritually, so I joined charismatic Christian groups in which emotional manifestations of the Holy Spirit are common. I desperately wanted to have what they had - an emotional experience of God's presence - and asked them to pray over me. It didn't work. When I didn’t move with the Holy Spirit or speak in tongues, they told me it was because I had rejected God. I worried that it was the other way around: God had rejected me. Maybe I felt like an alien because I deserved it. I deserved to be alienated, irretrievably and forever far from God. I tried to pray, read the Bible, and do all the "right stuff." But I still felt out-of-touch. I wondered if I was so broken, such a misfit that God simply took a look at me and decided to move on. I wish I’d known then that I was an Aspie. And that God loves Aspies. I still feel alienated from many parts of Christian culture, but Jesus himself finally reached me. And man, did I feel that. To people who are beaten down or befuddled by religious rules, Jesus offers something that no one else does: rest. "Come to me, all you who are weary and burdened, and I will give you rest," he says. And he sums up the entirety of complex and confusing religious laws with this: “Love God, and love your neighbor.” Beautiful. Even children can understand that. The Bible tells a story about a man who approaches Jesus and admits that he has faith, but also strong doubts. "Help me in my unbelief," he asks Jesus. Jesus doesn't blast him. He loves him. To me, Jesus is the only one who really makes any sense. Oddly enough, considering my medical condition, I'm now a radio personality on a network that plays Christian music. It’s a beautiful fit, in many ways, because I get to talk to many people who also don’t fit in, and wonder if God loves them. It’s true, though, others won’t understand me. I know that. I’m still an alien in the American Christian subculture. Each evening I retreat from it, and I go straight to the Gospels. It's not out of duty that I read about Jesus; it's a respite. I long for it, because I'm awash in two strange and baffling cultures, both the irreligious and religious. And I long for someone I can finally understand, and someone who might finally understand me. Brant Hansen is a radio host on the Air1 network, where his show airs from 3-7 p.m. CT. He also writes a popular blog at air1.com. The views expressed in this column belong to Hansen.  The Editors - CNN Belief Blog Filed under:Belief • Bible • Christianity • Church • Faith • Health • Jesus • Opinion • Spirituality