The 2011 Bowen Backyard

26 12 2011

The Bowen Backyard 2011

We hope this letter finds you all well and happy. It’s funny how after Halloween things churn into high-gear. This year has been quite eventful for us.

Patrick’s learning accelerated. It is going to be hard for me to share everything so here are the highlights: He now communicates with an IPad. His verbal communication has increased, too, but it is not as predictable. He greets people with “hi.” Recently we’ve heard a phrase that sounds like “go away” which sometimes is appropriate to the situation and sometimes is echolalia. Patrick is now back to playing soccer and by this fall was working well with a teenage buddy. His basketball throw is improving as well; he has gotten the ball in the hoop, too. He is getting better at pressing the right numbers on the microwave after we give him a verbal prompt of what number he needs to press. He attended a concert at Miller Outdoor Theater & passed out flyers about the school afterwards.

How wonderful it is that our community is becoming sensitive to the needs of our kiddos. He’s attended several sensory-friendly movies, like Rio, The Smurfs, etc. He has also had field trips to Chefs-2-B where he created his own pizza. Jeff and I took him to the planetarium and museum. He did not want to sit in a recliner chair, and fortunately, the museum had regular-backed chairs for those differently-abled. He enjoyed the energy exhibit. When we got to the gem/jewelry exhibit, he helped me try to find the exit very quickly–typical male! You can view some Patrick videos on http://www.youtube.com/user/JadeKirra (my Jedi name–no laughing; geeks rule!)

During spring break, he used his IPad independently to say, “Mom, I need help” and then he verbally said, “I need help” right after it. These are always surreal moments to us. He was playing Connect 4 independently with a peer at school, a child who I can say has actually been as close to a friend to Patrick as he has ever had. It’s fun to see him laughing again. He was shown the “ice” button in a Subway store. He kept pushing the ice button and laughing every time ice came out. He reminds us of the beauty of living in the moment. He enjoys using the self check-out areas of the store with the scanner and knows to scan it & put it in the bag. He helps placing items on a conveyor belt from the basket and adores the debit/credit swipe computer, so we got him a gift card that he can use to make his own purchases. In May, he attended his first wedding. We dressed him up in nice pants, a shirt and a tie; he looked so handsome.

Patrick in his first tie, and not a clip-on

He refused to keep his shirt tucked in, and we gave up the struggle. One must pick the battles to be fought.

During the summer, he went sailing for the very first time and enjoyed it. This fall the school has been working on academics and activities that will lead to employment (office work, stacking cans, etc.). He has begun to understand the concept of talking on the phone and is following simple directions given.

Yeah, I really don't like that hat. Get it off.

While things sound all peaches and creams, we do have our trying moments where we really hate autism. As with all parents, we deal with the “teen attitude.” Patrick will be 16 on December 17. Our baby is almost 6 feet tall.

Mom feels like a hobbit here.

The best news for us and for Patrick came in June when I signed the documents. The school district is now paying for Patrick’s private school tuition, the bus drive, and a private agency to do speech therapy with him. He will get OT through a school-provided individual who will go out to the school. WE WON, WE WON, WE WON! Seven long years of battle. When they went to observe him at school, his progress was undeniable. It was done in a simple meeting; no due process; no mediation. The sense I got from that meeting was that this would be permanent for the rest of Patrick’s school career, even though they have to review it year to year. The burden that lifted off our shoulders was immense.

The year has been busy for us as well. I left the science fiction website I was writing for in January and a month later got an extraordinary opportunity to be part of something called Fox VIP, at the recommendation of our local Fox station. I continued to write and promote shows, and now I was getting all these presents. Out of all the things I received, my favorites were a signed “Fringe” script,

The signed Fringe script. Treasured forever.

my “So You Think You Can Dance” shoes,

So You Think You Can Dance Shoes Thanks for FOXVIP

and my “New Girl” Adorkable T-shirt.

My "New Girl" adorkable T-shirt

I also had an opportunity through this association to fly out in May to Los Angeles to the American Idol finale show (airfare, hotel, spending money all covered). Sadly Jeff could not go with me, so my friend Glicel did.

Delays, delays, delays

We met up with my brother-in-law for lunch & dinner with a friend.

Me and my brother in law.

Robert Meyer Burnett, my friend Glicel, and Me at Gordon Ramsey's restaurant in the hotel.

I think I got about 9 hours of sleep during the 3 days involved.

Between Feb and April, I did a lot of work on the school’s Rock Autism benefit.

My semi-rock look. Kids were going to be there so I had to tone it down.

The week after was our Boots and Bling Gala (April 2011) in which 320 people came out to support Patrick’s school at The Woodlands Resort and Conference Center. I was able to help with the event as it approached and afterwards. Being involved with Patrick’s school is deeply gratifying. I would do anything for them. They are the heroes who help hundreds of children.

One half of the people there.

The other side of the room with the dual screens, each for each side.

In October, I went to visit my sister in NC; I had not seen her in at least 5-6 years. Out of all the things we did during the extended weekend, our trip to Cherokee was my favorite. I adore learning about other people’s cultures and history, but most especially their spiritual/religious beliefs.

Oak Grove Inn?

Cherokee, North Carolina

As December beckons, I am in charge of the book fair at InKids and now am the print/promotions chairperson for their Boots & Bling Gala 2012. Being such, I want all my Houston area friends to come. It is so much fun. Save the date: April 14, 2012 at The Woodlands Resort and Conference Center on North Millbend in Grogan’s Mill. In June, I attended my first CD release party of local talent who I became familiar with during my efforts of Rock Autism.

I continue to blog at here, tweet http://twitter.com/pbmom, and you can find me at Facebook here:  http://www.facebook.com/profile.php?id=1535065933.   For as many joys and blessings that have come into my life this year, sadness also visited in the span of 2 months with the tragic death of a friend’s son, the expected death of another friend, Joe, and the unexpected death of my friend and neighbor of 15 years, Lenie.

Jeff and I did manage some time away in January of 2011 to Dallas to the Women of Sci-Fi Convention where we got to speak to Alaina Huffman,

Alaina Huffman

Katee Sackhoff, and Tricia Helfer for a considerable length of time.

Katee Sackhoff

Tricia Helfer

In addition to their Q&A sessions, we also got to see Q&A sessions from Nichelle Nichols (of Star Trek), and Yvonne Craig (the original Batgirl).  Erin Gray (Buck Rogers) was also there as was Morena Baccarin (Stargate SG-1, V, Homeland). Jeff thought it was funny that when he would come back from going to the bathroom, I would surrounded by a group of male geeks chatting with me about what I thought about this show or that show, how I felt about the female additions to Human Target that season, and into more heavy anthropological and cultural advances that have expanded the once exclusive male areas of geek to women, like the expanding roles of lead female characters in video games.  The male-geek-to-female-geek ratio was 10:1 if not higher. We also got to meet up with another Twitter friend who flew in from Vancouver, British Columbia, and met some other people through him. I also had breakfast with one of my high school friends from New York. She hasn’t changed much at all in all these years.

ScoobyKoo from Vancouver and Me at Women of SciFi Convention, Plano, Jan 2011

Jeff has been extremely busy at work, taking on new responsibilities as a member of his company’s safety team. Since he works for a utility company, the emphasis on safety is extremely important. Some of his duties include conducting monthly safety meetings, bringing in industry speakers, CPR training, blood drives, managing the group’s website and content, and preparing his business unit for safety audits. In addition, his work has picked up significantly in his department as the company is building new power plants. He often states to his coworkers that there are not enough hours in the day! Jeff continues to exercise and has brought Patrick along on his two-mile walks of our dog, Maddie. We think that this and other physical fitness activities have helped Patrick improve. In his spare time Jeff continues read his books and play his videogames.

We would like to close with a request. If you find yourself wanting to give to a charity on or before Christmas Day, please consider helping Patrick’s school. They are a not-for-profit, so your donation is tax-deductible. In August, Patrick’s program was able to double in expansion. Even though parents do pay tuition, not all costs are covered. One hundred percent of the money stays in the school and at least 85% or more goes directly to the children. We have been honored already by the response of my friends on Facebook and Twitter, and have raised our goal twice now. You can make a donation by going on-line to: http://www.firstgiving.com/fundraiser/hildabowen/annual-campaign-2011 We wrote a story on there as well (similar to my Rock Autism speech). If you are leery about using Visa/Mastercard, then you can send them a check directly to (just attach a note that it is in honor of Patrick). Allison Boyd, Donor Services, Including Kids, 5364 FM 1960 East, Humble, Texas 77346 Make it payable to Including Kids Thank you for your consideration in this. Even $5 helps.

May we share in the song of the angels, the gladness of the shepherds, and worship of the wise men. Close the door of hate and open the door of love all over the world. Let kindness come with every gift and good desires with every greeting. Teach us to be merry with clear hearts. May Christmas morning make us happy to be Thy children, and Christmas evening bring us to our beds with grateful thoughts, forgiving and forgiven. Peace & blessings are wished to you and your families always.

Happy Holidays!
Hilda, Jeff & Patrick





An Autism Christmas

9 12 2010

An Autism Christmas

For families with kids with autism, Christmas is a challenging time. Many children with autism have co-existing diagnoses, like sensory integration disorder. This is a neurological disorder that was first studied in-depth by A. Jean Ayres, Ph.D., OTR. Dr. Ayres describes sensory integration as the ability to organize sensory information for use by the brain. An individual with sensory integration dysfunction would therefore have an inability to organize sensory information as it comes in through the senses. To give you an example, many children with autism who can speak will tell you that fluorescent lights hurt their heads. They can actually hear the noise made by these lights and it causes pain within their bodies. One of Patrick’s responses to this disorder was that certain noises he would hear would make him dry heave and eventually throw up. We noticed this response with changing the plastic bag in the garbage can, lawnmowers, leaf blowers, etc.

We were ill-prepared for his second Christmas morning (when he had just turned 12 months of age on December 17) when we had him try to open a Christmas present. Apparently the sound of the tearing paper had the same effect for him. I’m thinking this is NOT normal. Kids do not throw up opening their presents. I added that to the list of “weird things about Patrick” that I had begun gathering.

That Christmas it was more of a curiosity for me, as he had not yet been diagnosed with autism. The scientist in me wanted to see if I could correlate a direct relationship between the two items by running several trials to see if we could reproduce that at different times and settings. There indeed was a direct correlation.

When the third Christmas came around, he was age 24 months. To see it happening again brought grief to my Christmas as we had gotten the autism diagnosis 6 months prior. By the fifth Christmas morning, my heart could no longer bear the pain Christmas morning brought. My husband and I decided that on Christmas Eve after Patrick was in bed, we would open our gifts to each other and that others gave us so when Christmas morning came, we would no longer associate it with a grieving heart.

As we worked with him on overcoming his sensory obstacles, we would try one present. He would tear it once; we would put it away and come back to it later. For many years, we practice this same ritual. Eventually he could tolerate the noise, but the look on his face said “chore” versus “joy.”

Three years ago, things suddenly changed for him. We were opening a gift on Christmas Eve and he looked curious about it all. We asked him if he wanted to open some presents with us. He gave us a huge smile and sad down with us. He would rip the paper and act like he was startled and would begin to laugh hysterically and clap his hands. He had recently begun to like the feeling of an adrenaline rush and loved being scared and startled. The tearing of the paper scared him, he experienced a rush of adrenaline, and he liked that. WHO CARED? My child was opening up a present and enjoying it.

Patrick opens his present one piece at a time

We allowed him to open up every single gift that evening, and then Christmas morning, he got to do it all over again (because we rewrapped everything). This year, the number of gifts under the tree is less, but that won’t stop us. We will be wrapping up old toys, put current clothes in boxes, just so we can experience the magic for which we yearned almost a decade. Christmas is about miracles, big and small. This time it was the simple act of opening up a gift about which others do not think twice.

Patrick finally unwraps it.

Find the joy of ripping off the paper of each one of your gifts this year, one tear at a time.