A Letter to My Child with Autism on His 18th Birthday

17 12 2013

At 11:57 a.m. on Sunday, December 17, 1995, you came into this world. Your birth was difficult. There were just a few months between 5 months and 14 months where I thought things were ironing themselves out. Life for your young 18 years has been grueling as you tried to navigate a world that overwhelmed you every minute of your waking day. My heart always aches for you. As your mom, I tried my best to try to make it better for you, like a mother putting a Band-Aid on a boo-boo. But your boo-boo is so deep and consuming that the task was just impossible. This was nothing I could fix and that has been the hardest thing for me to accept. I am not sure that I will ever be able to accept that you will not get to experience all the things my friends’ children will–college, a career, a significant other, marriage, children of your own. My faith in God is challenged at every turn. How could a God exist that allows you to suffer so much? God did not do this to you. I think it was a perfect storm of genetic predisposition and human errors. As what happened in my own life, God said, “Okay, this has happened to you–but trust me to find a different path for your journey.” Your path just happened to be through a tropical jungle that required a machete to move forward.

Either the day after you were born or the week after you were born.

Either the day after you were born or the week after you were born.

I have no doubt that we have pursued every avenue that gave you the best chance to overcome your challenges. As my mind tries to focus on all the things you cannot do for yourself, all I need to do is watch the video from Son-Rise when you were 3 years old where all you did was “mantra chant” and turn pages of your book. There was very little eye contact.

I am so proud of all the work you did coming from your world into ours. How scary that must have been for you. I think of the scene from Lord of the Rings where the fellowship crosses the bridge in the Mines of Moria, all the forces around them trying to stop them from crossing.

Autism is the Balrog.  YOU SHALL NOT PASS!!

Autism is the Balrog. YOU SHALL NOT PASS!!

I have described you often as my life teacher. I have thought that I was the conduit to help you achieve whatever your purpose is in this life. If it were not for you, I would not have created the special needs ministry at St. Anthony’s–the countless numbers of people who were helped that may not have been. Your life and struggles have been shared with thousands of people. There is no doubt in my mind that you have influenced some decisions they have made in their own lives. Perhaps they are grateful for things they never thought to be grateful for–like the gift of just eye contact. Because of you, I have met extraordinary people. I have achieved a superhero level of patience. I have become a warrior not only of your rights, but the social justice rights of all people. I have learned not to make judgments of people. I have more compassion. I have always had a survivor’s strength, but your issues caused me to find strength even deeper than I could ever imagine.

Patrick & me at his 16th birthday party.

Patrick & me at his 16th birthday party.

The tears that flow so easily from my eyes today are a mixture of joy and pain. No parent wants to see their children struggle.  I don’t know what our future together looks like, but as long as I breathe, I will do everything I can to make sure you have the best life possible and to help you fulfill your destiny in this lifetime.

The seas may be smooth or rocky, but we will navigate them together.

The seas may be smooth or rocky, but we will navigate them together.

I love you pumpkinator. Happy 18th birthday!

 

 





Reflections of 2011

28 12 2011

As we near the close of 2011, most of us look back and reflect on the year, vowing to make changes in the next year. I have never been big on making resolutions. Oftentimes we make resolutions so impossible to achieve, we set ourselves up for failure as soon as we write them and commit to them on paper (or in our heads). I downsized from resolutions to an “it would be nice if…” list and downsized to no list at all. As each individual year progressed, when I saw opportunities for growth and change, I took those paths. Perhaps it is the free spirit in me that did not want to get tied down to a list, wanting to bend and move the way a tree does in the wind.

This year has been a year of extremes in my life. Fortunately most of the events were on the positive end (see The Bowen Backyard 2011 post).

I decided that one goal is sufficient to cover all the others: Wake up every morning cheerful and bright BEFORE the morning shower. If one day it becomes impossible to achieve, resolutions will no longer matter anyway.

Happy New Year!





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?





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.

 

 





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





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.