Christmas Wishes for 2011

26 12 2011

Christmas is a time of universal reflection for me, maybe even more so than Thanksgiving. At New Year’s I’m looking at personal achievements in the past year and what I want to accomplish in the next year.

When we sit down to our meal, I recount our list of blessings. Every year, the list seems to grow. I start off slowly, 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 inevitably 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? NEVER. 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. I pray for those contemplating suicide that they find some reason to hang on to this life just one more day.  Then I’ll begin to recount all the blessings currently in my own life.

While I may moan or complain from time to time, my life is very good. Patrick continues to flourish. 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.

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.

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?

4. More kindness. As our economy struggles, I have noticed more rude people. Perhaps at the heart of this issue is self-centeredness. How can you be kind to others if it is all about you? I understand your life circumstance may be difficult, but the person who has done nothing to you is now the bulls-eye of your toxic dart board. I believe in karma.

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?





Merry Christmas & Happy New Year to all!

25 12 2011
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To all my friends from this blog, Twitter, Facebook, or my travels along this road of life, I treasure you all. I’m sorry if I wind up not being able to acknowledge each and every one of you on a one-to-one level (although God knows I’m trying before Christmas turns into a pumpkin). Thank you for all the support you’ve shown me and my family over the past year. Thank you for laughing at my odd sense of humor and accepting all the craziness that is wrapped up in me. Thank you for those moments where I needed uplifting because I was so exhausted. Thank you for supporting me through my chronic health issues this year. Thank you for the radical honesty for the times when I’ve needed that. Thank you for encouraging me when I had self-doubt. I am blessed by your friendship more than you will ever know. Next to my family, you are the greatest gifts in my life and I will be remembering you on this day.

I intend to kick 2012’s ass. Perhaps it will kick mine. But it will be interesting whatever happens. It is comforting knowing that you will all be a part of that.





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.






Holiday Tree Versus Christmas Tree

22 12 2011

Over and over again, I hear, “It’s not a HOLIDAY tree, it is a CHRISTmas tree.” Where is there a Christmas tree in the Bible? If you have a tree up, you’ve already bought into a secular Christmas. If you buy presents for those who have no need of even one more gift, you’ve bought into a secular Christmas. If you bought a magnet that said, “Keep Christ in Christmas”, you’ve bought into a secular Christmas. I always find “what would Jesus think” a good rule. I often imagine Christ shaking his head when he hears such things, saying, “They do not know me.” I doubt He would even want to have a day of His own where we celebrate His birthday. When I read the Gospels, what I take from them is that we are to be walking the path of Christ every day, not just one day a year. We are to model His example of feeding and clothing the poor, ministering to the sick, being compassionate, being at peace, not making war, forgiving others, etc. If you think writing a check or buying a gift for someone less fortunate meets your obligation for making Christmas about Christ, you would be wrong. Christ would never phone it in. If you are yelling about putting “Christ” in Christmas, how are you spending the rest of the days of the year? Are you focused on things about yourself instead of others?

If only it were this easy to just put a magnet on your car and be done with any other obligations.

Is it wrong to participate in Christmas then if you participate in both the secular and Christian aspects of it? No. Just stop being a hypocrite about it.  While decorating evergreen trees was popular in the 15th century, Christmas trees did not start catching on until the 19th century with the first US trees occurring anywhere from 1777 to 1816 depending on which claim you believe had the “first” tree in America.  The custom is only a few hundred years old.  Christ died 2011 years ago.  Historians will tell you based on the star in the night’s sky, the Star of Bethlehem, Christ was actually born sometime in June.  Does it matter that Christians decided on a date close to Pagan holidays such as Winter Solstice to celebrate Christ’s birth so they could be converted?  No, it does not.  Because Christ would not care.  He would care more about how you are living your life based on his life.  When you are focused on what people call the name of a tree that does not matter, that is part of a secular Christmas, you’ve missed His message.

If you truly want to keep the Christ in Christmas, perhaps this is a better road map for spending your Christmas season instead of arguing about a name of a tree:

1. Take time to be alone and ponder your relationship with Christ, not only at Christmas, but the relationship you have every day.

2. Read the story of Jesus’ birth and note how people responded, Mary, Joseph, the shepherds, Simeon and Anna. Remember that every other day of the year as well.

3. Praise God at Christmas and join others in celebrations of music and praise. Continue this tradition every week of the rest of the year.

4. Help those in need every day. Follow the example of Jesus whose heart was filled with compassion for those who were suffering.

5. Keep your “to do” list as short as possible. Limit your social obligations so there is time for reflection.

6. Use cash when you buy gifts to avoid holiday debt. Invite your relatives to support a charity instead of giving you or your family a gift.

7. Tell others about our Savior.

8. Remember Christ’s church (not a particular religion) around the world. Some are enduring great hardships.

9. Live like Christ every day. Be compassionate, forgiving (especially in mall parking lots, SCHOOL ZONES, harassed sales staff, other people being rude and un-Christ-like). Be sensitive to the people in your own life.

10. Be joyful.





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?





Matthew’s Gift

13 12 2011

I was told I was going to have great difficulty getting pregnant. Once my husband and I were married we started trying to have a baby right away. I was surprised when it didn’t seem to take that long; however, my baby had died secondary to complications of triploidy in utero in my 2nd trimester in August of 1993. One day I went for my regular doctor’s appointment and they couldn’t find a heartbeat. I had no signs that I had miscarried so it was quite a shock. On the autopsy, they determined he was male. We named him Matthew Joseph (Matthew because it meant God’s gift, and Joseph because that was Jeff’s dad’s middle name). In just a matter of 5 years previous to this, both of my parents died, along with my grandmother and several other relatives. This grief, however, shattered my soul; a piece of me died with him. I had called my church for spiritual guidance regarding customary funeral rites for a baby that was not baptized, or if a baptism could be arranged, but no one returned my call; I felt abandoned.

Although soured on organized religion after this, I still had great faith. I often spoke to Matthew, asking him if he could just send me a sign to let me know he was okay and he could hear me. I knew he was in heaven, but there is another level of you that wishes you could have a conversation with them. I never even had the opportunity to hold him. Touching my lower abdomen, I whispered goodbye, as a tear fell from my eye as they put me under anesthesia.

We planned to go home to New York that Christmas. In the early part of December, Jeff and I talked about snow and how lovely it would be to see. Jeff reminded me that Long Island rarely got snow, and even more rare on Christmas. Without thinking I said to him, “Matthew said he would make it snow.” I have no idea why that came out of my mouth, but inside me, I just knew it was true. Jeff gave me “the look”, the one that said I was setting myself up for heartbreak, but didn’t try to dissuade me too much, only to say, “Don’t get your hopes up.” I looked at him with an unshakeable faith: It…WOULD…snow.

Early Christmas Eve day, his family gathered and opened gifts. Seeing the children opening their packages was heart-wrenching to me. I had to excuse myself quietly to the bathroom multiple times so I could cry, but did not want them to know I was tearful because I did not want to sour their Christmas experience.

The whole week the weather person said it was going to snow, then it wasn’t going to snow, then it was going to snow, and the final word was “definitely no snow.” Still I looked at Jeff and said, “Matthew said it would snow.” He remained quiet, knowing how much my heart was aching. I think he was preparing himself for the emotional mess that ultimately was to come when it didn’t snow.

His sisters had gone out to their friends’ houses. His mother, father, Jeff and I were sitting in the den in the early evening. The den was connected to the garage. We sat there, watching something Christmas-related on TV. After hearing what sounded like the automatic garage door opening, we were expecting to see one of his sisters walk through the garage door into the den. We waited…and waited. His parents wondered what was keeping whoever it was that just pulled up from coming inside. I walked to the window to see if maybe they were outside. Instead I saw it was snowing.

I gasped. “IT’S SNOWING!!!!!!!!!!!!!!!!!!”

If it had only been me who heard the noise of the garage door supposedly opening, I might chalk it up to wishful thinking. Jeff’s parents heard it, too. Had we not heard that noise, I would have missed the snow. None of his sisters had come home and would not for quite awhile.

Without a coat and without shoes, I ran out of the back of the house and let the snowflakes fall on my face, and I whispered, “Thank you, my baby. I love you. Merry Christmas.” I looked at Jeff and said, “Now do you believe?” He burst out in tears, happiness mixed with grief. Jeff’s parents looked at us like we were crazy. When we tried to explain, we sounded even MORE crazy.

It seemed to be letting up and I yelled, “Keep it coming. We’ll be right back.” I told Jeff we needed to go get our coats on to come out here to fully enjoy the moment. All of a sudden, it started snowing more heavily.

If anyone has seen a large-flake snowfall, the snowflakes seem to silently hit the ground. There is a sense of peace, awe and beauty surrounding nature’s majesty. Even the air is different, soft, like a whisper.

We went inside, bundled up, put on shoes and proceeded to go for a walk around the pond. We had a good talk, a good cry, and a good laugh. Our spirits were renewed.

Midnight Mass had never been more beautiful to me than that night. Matthew gave us one of the best Christmas presents we had ever received. Regardless of the circumstances of his death, he was my child and his life was significant for the short amount of time I had the privilege to carry him. Even in his death, his life continues to have significance. And I will always be his mother. The boundary between life and death can never change that. He will never be forgotten. His spirit remains with us…always.





Join Team Patrick!

14 11 2011

I knew it was a long time since I’ve posted, but I had no idea it’s been almost 2 months. After Halloween is over, things seem to go into high gear, don’t they? Unexpected illnesses throw the whole schedule off. Tonight I’m starting our annual Christmas letter because I have about 200 cards to send out via regular mail not to mention the ones I send electronically. I just opened the mail I’ve been neglecting for a month. I have no time to even start a game of Skyrim. The Fringe fall finale is this Friday (what????) Its nuts! I was supposed to have attended Wizard World in Austin today for a day trip with my husband to visit Alaina Huffman and Julia Benson of Stargate Universe, but the flu decided to pay us a visit on Monday night to Tuesday morning and then Patrick proceeded to get sick. I haven’t read Joe Mallozzi’s blog in over a week, something I make sure to attend to every day. I also need to work, help Patrick’s school, and put up at least a Christmas tree.

I did accomplish quite a bit today considering I’ve been out of it for about a week. One of those items includes a fundraiser campaign for my son’s not-for-profit autism school, Including Kids. I know that budgets are tight and dollars are precious, but autism waits for no one. I would like to invite you to read our story, about this wonderful school and the difference you can make with even a small donation (even $5.00 helps).

My family thanks you for the support you have always shown us. I don’t know how we would have gotten this far without the financial, emotional and spiritual support of friends, family and even strangers.  If you feel like you might be able to contribute to this wonderful school, please follow this link:

http://www.firstgiving.com/fundraiser/hildabowen/annual-campaign-2011

Thanks for joining Team Patrick. Although I set the goal at the level that was requested by the school of each of the parents, I would truly like to exceed the amount. The amount is tax-deductible.

Blessings to all.

 

 





Kinecting Times

3 01 2011

I have never played on a Nintendo Wii. We have been an XBox family for a very long time. This year, XBox unveiled their new technology, Kinect, formerly known as Project Natal.

With the combined monetary gifts for Patrick’s birthday and Christmas, we thought this might be an excellent gift for Patrick this year since he was playing on a Wii at school. If he needed to have a controller in his hand, we had many in the house for various other electronics we could substitute. With Patrick’s sensitivities to people touching him (because of his autism), it is going to be something that will take a long time to nurture.

Jeff got it all hooked up and played some games on his own. When I became available that day, and I got a taste of what this new toy was about, it was like catnip. It is now My Precious. The fierce competitor in me re-emerged, a part of me I haven’t seen since my high school days. I was playing to WIN; however, it sucked all the joy out of my husband’s playing. I said, “If you aren’t playing to win, then WHY BOTHER?” He said, “How about for the enjoyment?” I pondered that for the moment and quickly discarded it, “No. Playing to win IS my enjoyment.” Game after game, I played as if I were playing the games in real life. And game after game, I won.

Kinect Sports

Now this would not mean so much unless you knew that my husband works out 1-1/2 hours a day at the gym. Me? With my fibromyalgia and body pain as a result of increased intracranial pressure, I have to be very careful about my exercise. Sometimes I cannot even exercise aerobically because it increases my intracranial pressure. With the rush of adrenaline going through my body I was feeling JUST GREAT. However, by the next afternoon, my back was hurting me a tremendous amount. Then it dawned on me that my exercise was not virtual; it was quite real.

The second night, we played again, and I remained undefeated. After a valiant try and both of us working up a sweat as we volleyed the ball back and forth in table tennis, I won 15 to 13 (had to win by 2 and it was a very close game). We decided to try boxing. Having enjoyed immensely virtually shooting Jeff in Call of Duty Special Ops Deathmatch Split Screen a few nights previous to this, I knew this would be a treat. The bell rang. I knew I didn’t have endurance on my side, so I went balls out, as if I was fighting for my life. His avatar was on the ground. All I heard him saying was, “Huh, what?” His avatar got back up, the bell dinged, and in less than 30 seconds, I knocked him out in a TKO. He thought it was his avatar that was doing the damage to my avatar, but it was quite the reverse. I could barely breathe–but it was from my hysterical laughter and not my aerobic effort. I told him I had been watching too many James Bamford stunt moves–quick, fast, and deadly.

The people who created Kinect must have thought of every possible contingency. As my heel hit the front of the couch and I fell backwards, I did not realize I had a bowling ball in play. So when I got up, my arm went flying, as did my virtual bowling ball, flying into the virtual crowd, complete with screams and glass breaking. The commentators even had something to say about it. Once again, I found myself in a ball on the couch hysterically laughing. I am now awaiting my virtual lawsuit. It was that game, however, that broke my winning streak.

It was on to track and field for awhile where Jeff schooled me on the finer points of hurdles, javelin, discus throw, a 100-meter dash, and the long jump. The entire time I was whining about how unfair this match up was. My kryptonite. I suddenly longed for the days when I was 16 years old and running a 7-1/2-minute mile. Soccer turned into one, long arguing match. It reminded me a great deal of our times in Splinter Cell co-op or the previous Call of Duty games.

Last night, we decided to ease Patrick back into lesson number 2. He did better with the touching, and actually understood when I asked him to hold his arm up in the air, but by frame 5 of bowling, he started to cry. It broke my heart. Sometimes it is hard to tell when to push him for more and work through the tears and when he truly has had enough. He sat back down and enjoyed watching Jeff and I play. When I took a break on the couch, he came over, curled up in my lap and fell asleep.

On its way to my mailbox soon is Kinect Fitness. I’m looking forward to the yoga and tai chi programs.

Kinect Fitness

Kinect gets two thumbs up in my book. It is great not only for family fun and entertaining friends, but also for fitness, especially for those people, like me, who have gotten out of shape over the years.





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?





Patrick Turns 15

17 12 2010

At 11:57 a.m. today, December 17, Patrick will turn 15 years of age. It is a day worth celebrating, especially given the progress he has made since his diagnosis of autism when he was about 18 months of age. There were times then he retreated into a world of almost catatonia, where a low hum was the only sound coming from him. We used to call it his mantra chant. The path has been fraught with ups and downs. We were like ants on a mountain, fighting for every piece of territory gained, always being undermined by the elements. A parent would not give up on their child if they had cancer; they would seek out whatever treatment their child needed regardless of whether or not it was covered by insurance, regardless whether or not it would lead them to bankruptcy. Such is true of parents with kids with autism. The only difference is that the cancer (the autism) is a lifelong battle.

Patrick as a baby

 

True to our beliefs, we have mostly lived in the present for Patrick. I stopped blaming myself for his autism. They were not all happy days, especially during 2004-2010 when we battled the school district for every little thing; anger was the only thing to which they responded, so we used whatever was in our arsenal to help Patrick.

I cannot help by feel incredibly blessed by the miracle that happened to us. We made the decision to cut the school district out of his life, especially after listening to some digital voice recordings we made over the summer to see exactly what was going on in his classroom. Two teachers engaged in extremely unethical behavior. We had planned to homeschool him, but an opportunity arose for him to attend a private school in the area. In just a matter of 9 days, they accomplished more than the school district did in 6 years. I love the shock and awe coming from my friends and family as they witness his metamorphosis. In this Christmas season, it is the second best Christmas present we have ever gotten, the first being my son’s birth.

Patrick's first day home; getting acquainted with Sam, our golden.

We would not be good parents, however, if we did not think of Patrick’s future in some shape. In the climate of the current state of affairs in Texas, it does not look bright. There are some very grim statistics: Approximately 70% of kids with autism like my son (especially those who are considered nonverbal) will be sexually abused in their lifetime. Texas has the distinction of the notorious “Fight Clubs” in state institutions where the residents were made to fight each other for the entertainment of staff. In a report dated December 1, 2008, the Department of Justice sent a letter to Governor Rick Perry about their investigative findings. Texas lawmakers have known about the abuses and deaths in the system for years and never did a thing about it–until the DOJ threatened to cut off federal funding. In their report, they noted that between the fiscal year 2004 and the current investigation of 2008 more than 800 employees across all 13 facilities that serve nearly 4600 residents had been suspended or fired for abuse, neglect or exploitation of the residents. Over 200 had been fired in just the year 2007 and another 200 had been fired in 2006. Fifty-three residents in the state facilities died in just the year 2008. The state took legislative action, but things have actually worsened.

Our extended family all live out of state. As we age, so do our siblings. We cannot ask the children born to our siblings to take on the responsibility of taking care of Patrick as he ages if we are no longer capable of doing so. The sheer amount of information that would be required of them to understand is mind-boggling. The second hindrance is that the money does not follow the person. For example, if my husband and I were to die, if someone in the family decided to take on the responsibility of care, they would have to leave him in the state of Texas. If they took him to another state, he would go on the bottom of whatever waiting list that state had. It took 10 years for my son to get off the waiting lists in Texas; with funding about to be cut this year, the people still on the wait list are going to have to endure even longer waits. If we decided to leave this state to be closer to family, the same problem occurs.

People with disabilities face job discrimination. In November 2010, the Department of Labor released a report on job statistics for people with disabilities. The percentage of people with disabilities in the labor force was 21.5. By comparison, the percentage of persons with no disability in the labor force was 69.8. The unemployment rate for those with disabilities was 14.5 percent, compared with 9.1 percent for persons with no disability, not seasonally adjusted.

Stereotypes of the homeless and unemployed plague people with disabilities. Too many people conjure up in their minds a drunk or drug-filled person who chooses to live the lifestyle they do. In fact, in 2008 more than 40% of the homeless are people with disabilities. These stereotypes lead to cuts in state and federal funding that could help these people become contributing tax-paying citizens.

It is unlikely that Patrick will ever be on a cognitive level to ever become a father as he can barely care for himself. If Patrick was a girl, I would be able to obtain birth control pills to protect from the incidents of sexual abuse that might lead to pregnancy. Because he is a boy, a vasectomy as a method of birth control is considered controversial. This is different from the controversy of routine sterilization of people with disabilities in the past.

All these things lead my husband and me to the conclusion that we have to outlive our son. If we do not, there will be no one to protect him.

Me and Patrick; I could look at him all day.

As we celebrate all of his accomplishments today and rejoice in remembering the day of his birth, we keep a wary eye on his future.

Autism Awareness