This information-packed guest blog is the second in a series from my friend and colleague Dan E. Burns. Dan is absolutely passionate about asking tough questions and finding answers related to young adults living with autism and their families. Dan’s last guest post Funding Autism for Life addressed options families have for supporting and caring for individuals with autism when they age out of public school. This excellent post from Dan explores The Brookwood Community, the brain in relation to movement and exercise and much, much more. Enjoy!
Touch, See, Feel, Move: The Brookwood Community in Texas and the Autism Epidemic
By Dan E. Burns
“We don’t just believe in miracles,” my guide told me, “we rely on them.” White-haired and in her eighties now, striding ahead of me cell phone in hand, my guide, called “Me-Maw” by some of the residents who to flock around her, prefers to remain anonymous. “I didn’t build this wonderful place,” she explained. “It’s God’s doing.”
She opened door after door as we made our way through clusters of busy citizens in the ceramic workshops, gym, natatorium, and clinic to a fine, on-campus restaurant near the gift shop and gardens of The Brookwood Community, a 495-acre residential/educational village designed to enhance the lives of adults with disabilities.

Last year I wrote about what I refer to as our diagnosis anniversary and all of the emotions it brings with it each year for me…right around Christmastime. This year, marks 5 years since our lives changed drastically - when we entered the community caring for and serving children and individuals with ASD; our 5-year diagnosis anniversary.
Ethan doesn’t really know I have these bitter-sweet moments every December and I plan to keep it that way, at least for now…He LOVES the joys Christmas brings and I adore watching the joy unfold around him. Spending time with our extended family makes him happy from the tips of his toes to the ends of the hairs on his head. He now shops for our family members – spending his own money – and helps wrap each gift. Ethan helped prepare gifts for the teachers and administrators he adores at his school. He understands why our family celebrates with gift giving and loves to hear the story of the Three Wise Men bringing gifts from afar to the Baby Jesus. Someday maybe I’ll share with him about my conflicting emotions at this time of year, but only when he’s an adult, and only if he is able to comprehend and filter such information to benefit his life and outlook; otherwise – I’ll keep it to myself.

Having your child involved with the gift shopping and present wrapping will provide an endless amount of language, cognitive, fine motor and creative learning opportunities this holiday season. This is a huge Theory of Mind skill…..understanding that giving a gift to a person will make them feel loved and happy, which in turn will help your child create a meaningful relationship with the person. My action affects how another person perceives me.

Raising a child with an Autism Spectrum Disorder often means that every gain, small or large, is hard-fought. As parents, we invest our time, our money, our patience, our love - our everything - into helping our children feel well, be well and make progress wherever their deficits may lie.
Ethan has made tremendous gains in the past 3 years; tremendous. I am so pleased with how far he has come, how much healthier his body is and how much more in-sync with his peers and his family he has become. But, it wasn’t easy…and the past month has been a roller coaster of emotion, stress and frustration for me.
Just before I left town for the Autism One Conference in Chicago last month, I realized Ethan had a huge cavity. He’s never had one. So, when I left for the event, I knew that I’d be eagerly attending any and all sessions I could regarding dentistry for children with ASD, anesthesia, Nitrous Oxide, Methylation, basically anything that could potentially relate to our current situation.

In May, I posted some of my favorite quotes about motherhood and how I’ve come to see motherhood with a vastly different perspective in the years since Ethan was diagnosed with an Autism Spectrum Disorder, in my post Mother Love. I thought it would be fun to put together a similar post for Father’s Day, because I can guarantee that my husband now views “fatherhood” differently than before, too.
Let’s start with a little humor…
A father carries pictures where his money used to be. ~Author Unknown
Now this one made me Laugh Out Loud! My instinct tells me that the phrase was probably written by someone raising a typical child or teenager with standard needs and expenses. But, raising a child with ASD is exponentially more expensive! I know many parents who have sold their homes, emptied savings and college accounts, used up retirement savings and still went into debt to pay for necessary therapies, interventions, special diets and treatments. While this isn’t funny – in the least – it is humorous (I think) in the sense that I stumbled across this quote and thought to myself, “Awww, sweet Mr. ‘Author Unknown’ probably doesn’t know the half of it!”
But in all seriousness, “fatherhood” is much, much more than a fat wallet or a hefty paycheck.

I’ve just returned from an intense 5 days in Chicago at the Autism One 2011 conference. Let me just say: it was amazing. I learned so much in the tremendous sessions and connected with many of the phenomenal speakers. I can hardly wait to report on some new insights gained at A1 over the coming months. But today, I'm excited to share something that caught me by surprise; a blessing that blossomed at home in my absence…
Since we’ve worked so hard over the past four years utilizing special diets, biomedical interventions and traditional therapies to help Ethan heal and develop, he has made some excellent progress. Knowing that he’s in a good place made it easier to leave him for 5 days for a big event like A1. But, as Ethan’s primary caregiver, he and I spend a great deal of time together. We’re both accustomed to "our time" and he thrives on many of our set weekly routines. (Like most kids on the Autism Spectrum, Ethan relies on routines to feel safe and confident in his varied environments.) Ethan and my husband, Greg, have a very close relationship, but they just don’t get a bunch of one-on-one time without me around – especially for 5 days at a time.
While I was in Chicago, Greg worked to fill Ethan’s days with some pretty fun outings and events. They went bowling, played arcade games and spent an entire afternoon/evening with my in-laws. And, they attended a Texas Rangers game together on Friday night and had an outstanding time. When I called Saturday morning to check in, Greg shared a story that brought me to tears in Chicago (and then made me laugh out loud). I’ll paraphrase their conversation while driving home late at night:

Part 1 and Part 2 of this series have received a great deal of feedback and we are grateful to our readers for taking the time to share comments, thoughts and concerns. Bullying most certainly affects most, if not all, of our families and it truly “takes a village” to keep our kids safe. While my initial three-part interview with Dr. Elliott finishes below, one of our readers made an excellent point after reading Part 1 (see comment “Adults Bullying Kids”) that we plan to address this week. AutismSpot Featured Blogger Craig Gibson has graciously agreed to prepare a post addressing this topic (watch for it on Tuesday); I value the unique perspective Craig brings to the topic as an educator, the parent of a child with special needs and as an individual who was bullied as a child. Dr. Elliott is also preparing some comments about adults as bullies (watch for those on Thursday). Until then, let us know what you think about the information below!
LAW: Please share some suggestions of what parents should do when they determine that their child is being bullied. Conversely, what should parents NOT do when they realize their child is being bullied?
Dr. Elliott: Parents should encourage their child to share their feelings. And it is ok to directly ask your child if they feel they are being bullied. It is important to listen and then validate your child’s feelings. Do not rationalize or minimize the bully’s behavior.

Music is a pervasive part of our culture. It supplements visual input with movies, TV shows (and commercials), video games and serves as a distinctive form of art which stands alone. Like most people, music is a powerful part of my life; it sooths me when I’m upset and stimulates me when I’m low. I select my music based on my emotions.
My son, Ethan, who lives with Asperger’s Syndrome, seems to have a very personal relationship with music, too. Since he was in the womb, he’s been exposed to music. We chose selections from classical composers to play specifically for Ethan when I was pregnant. As an infant, he continued to enjoy these selections in his nursery at naptimes and bedtime.
As he grew and developed, he picked up singing and humming – I love that Ethan always has a song in his head. About four years ago, when we visited my family out of state, my Dad commented on Ethan’s propensity for humming tunes; Papa dubbed Ethan “The Little Hummerboy” that winter. It is a nickname that resonates still this day.

Saturday marked Ethan’s first basketball game; in fact, it was his first game (ever) playing cooperatively with a team. Until this year, (Ethan turned 8 last fall), we didn’t feel Ethan had the self-control and intuition to handle a sport which would require cooperating with other kids while working to coordinate his own physical movements. He has participated in individual sports like swimming and Tae Kwon Do, both of which offer great exercise and fantastic opportunities to develop coordinated movements with both sides of his body, but didn’t force him to worry about anyone beyond himself very often.
When Ethan began requesting to play soccer a few months ago, I started looking for appropriate leagues which could effectively incorporate Ethan but at the same time challenge him. Many families living with ASD find success with leagues offering a buddy (like Miracle League or Buddy League) – Ethan just wouldn’t find that challenging at this age. He wants to be like his friends from school and I can’t say I blame him! Actually, I’m glad he wants to do some of the things his friends at school enjoy.

Four years ago, just before Christmas, we received the preliminary results of our son’s evaluation for ASD through our local school district. While I went in with plenty of knowledge and even suggested to the evaluation team that I suspected Asperger’s Syndrome, somehow it didn’t make it hurt less to see the results on paper. I remember reading the 20+ page document while extended family members visited and laughed with my husband in the next room. Ethan was tucked safe and sound in his warm bed for the night, but I was flooded with emotion. I’ll never forget that night. And while I love Christmas and all the blessings it brings, I will admit that this time of year tends to leave me feeling a bit overwhelmed. Truly a bitter-sweet time of year for me.