An Autism Christmas

24 12 2011

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 that 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.”

Four 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 sat 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 opening gifts.

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). The next year, the number of gifts under the tree was less, but that did not stop us. We wrapped 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.

Find the joy of in the simple act of ripping off the paper of each one of your gifts this year, one small piece at a time.  Savor the moment.  Don’t take that experience for granted.  Remember that others in the world cannot simply open a gift that you do without a second thought. 

Happy Christmas Eve.






Memory Tree

18 12 2011

I look forward to putting up our Christmas tree every year for two reasons. The first reason is knowing Patrick is going to love it. There is something about the twinkling of each delicate light and moving to and fro that allows him to appreciate the full spectrum of colors in a way I wish I could see. For Jeff and me, it is a yearly trip down memory lane. Our tradition is to put up our tree the Saturday or Sunday after Thanksgiving. Two years ago, Patrick was in his bedroom at the time. When he came into the room the next morning, the smile that crept up on his face was brighter than any star in the sky. My Christmas contentment lay within that smile. Last year he became the task-master, voicing his protest if we stopped at all to take a break. We would deliberately rest just to bust his chops and listen to him protest. This year he mellowed out, eagerly watching the lights go up, but still loving every bit. He is not quite ready to put the ornaments on the tree. We have tried. I think he does not like the feel of the artificial tree.

Every ornament I can trace back to a loving memory. After my mother died, of all the items left to me, the six ornaments that date back to my childhood hold the most significance. Being the dysfunctional home it was, our holidays then were filled with a mixture of happiness and heartache. However, when I look at these ornaments, I choose to remember the joy. They are old and falling apart. I do not know how much longer I will be able to repair them.

Ornament from my childhood

The tennis racquet ornament brings to my mind memories of my first love and the Christmas we spent together here in Houston.

Tennis racquet I bought for my first love.

There is the Santa & Mrs. Claus sleeping in a bed, handmade by a physician’s assistant with whom I worked; Mrs. Claus’ head is now missing.

Mr. Claus sleeps with a headless Ms. Claus.

There are the many ornaments I gathered in the first days of my first apartment. I found a wonderful company called Cracker Box who makes kits for these homemade ornaments with beads and lace and pins. For two years, one each year, I made these works of art. Their instructions were hysterical, injecting the personality of those who wrote them.

Those pins hurt putting in after awhile.

Before getting married I joined a Disney ornament-of-the-month club. There is Minnie, Mickey, Pinocchio, Donald Duck, and several others from that period of my life. Pinocchio’s nose has broken off.

Pinocchio's nose fell off.

Received as a wedding gift is a Lenox ornament of 2 doves kissing and labeled as “first Christmas.”

We moved on to our Star Trek ornament collectible obsession.

Picard stands watch of the Enterprise (the original) below.

It was then we began our golden retriever ornament collection.

Golden retrievers are now our obsession.

After Patrick was born, we added a “Baby’s First Christmas” ornament. Three ornaments are a result of my trip to Disneyworld in Florida in the late 1990’s with some friends. I have an ornament or two from an overnight trip to Kemah, Texas. During our 2001 trip to Vancouver, BC, I picked up an awesome golden retriever ornament on skis and with goggles on from a store in Whistler (where the 2010 Winter Olympics were held).

From Whistler, BC to our home.

I remember each ornament given to us as a gift and by whom. I think of those people with affection as we are hanging them.  Adorning our tree, too, are the handmade ornaments Patrick has made since he was a toddler.

Two years ago, MGM put out a Stargate SG-1 ornament (that I got half-price the bargain shopper I am). I was gravely disappointed to find our local Carlton Cards went out of business.

Stargate SG-1

Once done, we sit back and marvel at our memory tree, a symbolic diary of our lives.

What are your Christmas tree traditions?





Graced by God

16 04 2011

This is a poem I wrote for my son back in 2005 that was subsequently published within a larger collection. In honor of Autism Awareness Month, I’d like to share this with you all. I do not mind if you circulate the poem, but please honor the copyright.  He was diagnosed in 1997 (at about 16-18 months of age) with the classic form of autism.  He is now 15.

Graced by God, you were given to us,
but like quicksand, you swiftly left
into a silent storm of autism.
Diving in after you, unwilling to surrender you
to this entity that ensnared your soul,
we made contact.

Your eyes, emerald and gray, began to meet ours again,
slowly holding the gaze seconds longer.
Like ants on a mountain, we fight for every inch of ground,
the elements always undermining some of the territory gained.

With streams of overflowing gratitude for every look, every touch,
every sound, every action you accomplish,
feeling blessed for the differences that set you apart,
that make you our very special child,
graced by God and given to us.

Hilda Clark Bowen
Copyright ©2005 Hilda Bowen





Christmas Wishes

20 12 2010

As I sit down to eat Christmas dinner on December 25 with my husband and son, I will go through my 10 or more minutes of crying. When we recount our list of blessings, my list is usually long. This year, it will be even longer. I start off slow, thanking the Earth for the food, the people who planted it, grew it, harvested it, and transported it so that I could enjoy the meal of which I am about to partake. I make sure to thank the turkey for its life. Then the tears come–for the people who are going hungry, who are homeless, who are hopeless, and who are loveless. I may have helped some over the year, but did I do enough? Not likely. There is always more an individual can do. I gratefully acknowledge the people who have sacrificed their lives–our military and the quiet heroes of daily life. I say a blessing to those families who are grieving the death of a loved one; holidays can be the hardest times in their lives. Then I’ll begin to recount all the blessings currently in my own life.

This year I want for nothing, okay maybe except the Adam Lambert new acoustic CD and an announcement that Stargate Universe has been picked up by another network, but all-in-all, I have everything I could ever need or want. My son is thriving at the private school (and we found a funding source for it). The enormous stress of fighting a corrupt school district is gone. I have a husband who loves me and has for almost 20 years now despite seeing the deepest, darkest places of my soul. I have a wonderful golden retriever. I have a loving family, a roof over my head in a fantastic area to live, food in my stomach, a decent car to drive, great neighbors, wonderful friends, and an employer who is continuing to let me try to work each day as much as I can instead of filing for disability. Of course our retirement account was reduced to a 201K from a 401K after the economic meltdown as was everyone else’s, but Patrick’s autism expenses pretty much ate up the rest of it. Somehow I know we will be okay. While I might moan and complain about circumstances every now and again, a swift kick to my rear brings about enormous perspective.

The things I have on my Christmas wish list require the cooperation of others in order to achieve:

1. World peace. Sounds corny, I know, but I’m an idealistic fool who thinks this is actually possible. Before that happens, we will have to get rid of prejudice and hate. In order to get rid of prejudice and hate, we need better educated people.

2. End to hunger: With all the food we have and waste every day, we could feed the world.

End Hunger

3. A cure for autism: Just because I love my son and accept his diagnosis, doesn’t mean I would not want to make life easier for him, and for other parents not to have to even take this journey. The life lessons have been tremendous, but at what cost?

While I am waiting for those things to happen, I will continue to try to do my part, helping one person at a time, one day at a time.

People tend to store their “good will towards men” for just the Christmas season. As they pack away the Christmas decorations, the spirit of Christmas leaves them as well. Perhaps I should dream smaller. Perhaps my ultimate Christmas wish is for others to find the heart of Christmas in their daily lives and keep that siren song alive year-round. Instead of the 12 days of Christmas, we would sing the joys of 365 days of Christmas. Can you imagine what an astounding force of nature we as a people would be?