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