Autism and the Vaccine Controversy, Part 1

9 01 2011

Autism and the Vaccine Controversy, Part 1: Understanding my son’s history.

While I respect your viewpoints about vaccines not causing autism, I would suspect most of you having such an opinion do not have children with autism. I ask that you also respect mine. I would also suspect that many of you have not done actual reading of the real peer-reviewed research on both sides of the issue, but rather are regurgitating what the media is reporting. The media are not the journalistic pioneers they used to be; rather, they read from press releases sent out to fill the 24-hour news cycle. Many of those press releases come from governmental agencies.

Contrary to media hysteria, most parents with autism are not in favor of a no-vaccine society. We are highly intelligent mothers and fathers who were forced into a situation where our children were ill or changed or both, and like any good parent would, set about to find what happened. One minute they seemed fine and then the next they were just gone. The media makes us out to be psycho parents who are out to harm society by choosing not to vaccinate any further.

In order for you to understand how I came to the conclusions I have, you must understand Patrick’s history.

When Patrick was born on Dec 17, 1995, we thought he was two weeks early. The midwife felt because he was peeling he might actually be more like two weeks late. Our midwife thought we were having a girl all along (we never wanted to know; there are very few surprises left in life). Up to the moment he popped out, she was saying, “Come on Katherine Elizabeth.” She said, “Oh my, Katherine has a BLEEP.” And I remember saying, “Oh, honey you have a little buddy!” before I passed out from sheer exhaustion, and well, I was hemorrhaging, too, so that probably had a little bit to do with the passing out. It was quickly controlled though.

I had an arduous labor with contractions starting 8 minutes apart at 8:00 a.m. on Saturday. I wasn’t dilating. Five-minute-apart contractions occurred for almost 23 hours. I chose to deliver at a free-standing birthing center; however, I asked to be transferred to the hospital because I felt something was very wrong during labor. Call it mother’s intuition. The midwife didn’t transfer me and convinced Jeff that I was delusional. Twenty-nine hours later, Patrick was born blue and limp, and had no reflexes (an Apgar of 3 at 1 minute, 9 being the top score). He received what is called blow-by oxygen and he pinked up, but he still had no suck reflex. With an Apgar of 3, a baby would be spending some time in the neonatal unit of a hospital. Despite the fact that he wasn’t able to breastfeed, I was sent home six hours later. It wasn’t until 9 years later that anybody ever said the words “cerebral palsy” to me (due to birth trauma and lack of oxygen). He left the center with an Apgar of 8 at 5 minutes (9 is the top score). The lactation consultant met us at our house at about 9 p.m. in the evening.

When I came back for my followup visit the next day, she told me how disappointed she was in me with my labor because she had had high hopes for me. I told her I felt completely abandoned by her. A few weeks later she was to blame my history of sexual abuse on my prolonged labor, not on the fact that she went off and went to sleep and left Jeff and I totally alone, two people who had no clue what we were doing. Later I found out from the chief of staff at a local hospital that no physician in the area wanted to be associated with her because she made poor decisions. I wish I had had this information prior, but we have to deal with the choices we make and move on.

The first week at home was horrible. He wouldn’t sleep. I wasn’t producing any milk. By the fourth night of no sleep I was getting close to being psychotic. My lactation consultant used a hospital pump to pump me and only 1/16 of an ounce was coming from one breast; 1/32 of an ounce from the other. While others were saying I wasn’t adjusting to motherhood very well, all this time my baby was starving. We got some soy formula into him and he became the normal baby. It was a great Christmas present (his jaundice also resolved with the intake of formula). Meanwhile, I was getting worked up for a pituitary tumor.

On January 3, 1996, he received his first injection, a hepatitis B injection. It was then he started screaming for 18 hours a day. This becomes a very important fact later on. The only thing that comforted him darkness, being held so tight Jeff and I had to wear wrist splints from our wrists being so hyperextended (he wasn’t sucking so we had to hold his pacifier for him) or moving in the carriage. I started walking 3 miles a day just to get a break from the constant crying. That pregnancy weight came off VERY fast.

On Feb 21, 1996, he received his DPT, Hemophilus influenzae shot #1, his second hepatitis B injection, and I opted for the IPV (inactive polio vaccine) because I was immune-compromised and I heard the oral polio could put me at risk to contract polio with my immune state. The crying was much worse.

On April 17, 1996, he received another DPT, another IPV, another Hemophilus influenzae B shot (also known as HIB).

Two months later, in June of 1996, he received another DPT, this time an OPV, his third HIB and his third hepatitis B. This child was still screaming. I walked an intensely fine line bordering on insanity. I was on production at work so when I wasn’t typing, I wasn’t making any money. My husband was trying to work late to make up for what I was not making trying to deal with this screaming child all day long. We had no family to help close by to give me a break. They kept saying colic; this was NOT colic. My friends who had children who did have colic observed him agreed with me.

In September he got his first MMR. These immunizations play an important role later on (the mercury preservative thimerosal was in all of them).

By October, he seemed to be better. His milestones were behind, but that didn’t surprise me at all with him doing nothing but crying. My pediatrician suggested the Early Childhood Intervention program that was a state-based program that could get him OT, PT and speech help. By about February, I was watching the OT bouncing him on a ball and I said, “With no disrespect, how is that helping him with his gross and fine motor delays.” She said, “Oh, he has a sensory integration disorder.”

I scoured the internet searching this phrase. Just about every time, I was led to a site about autism. He wasn’t eating solid food still (now we know it was because the cerebral palsy affected his mouth muscles greatly).

In March, he got chicken pox and had an eardrum rupture, meaning antibiotics, which means his immune system was a bit depressed. In April, he got his second MMR, DPT and polio, and he disappeared. It was THAT abrupt. The affect of his face changed. I noticed he wasn’t responding to us; it was that quick. We thought maybe he had a vaccine injury that caused him to be deaf. We would throw phone books behind him and he had no startle reflex.

When I was cooking for Easter and I told Jeff to keep an eye on him. I was at the sink with the water running and talking with a friend (Jeff was talking to her husband in the other room). Patrick stealthly came into the kitchen and put his hands up on the oven, the outside of which was very hot and he started to cry but his hands didn’t move. Anybody knows that if you touch something hot, your hand or finger automatically pulls away. It was the first evidence I had of him possibly being brain-injured. Fortunately, we grabbed him (my friend was a nurse) and we held his hands under the water, acting quickly enough to stop any permanent damage.

I kept reading, scouring the internet. There wasn’t as much out there on autism as there is today and I read it all. I thought he had symptoms of autism and that everything I was reading said it couldn’t be diagnosed until he was 2 or 3. I told Jeff that he was to mark this day when I said it because this child would be diagnosed with autism. Jeff told me I was reading too much.

Jeff’s best friend’s dad died in May of 1997 and he went to the funeral in Florida. His friend’s wife had twins 3 weeks before Patrick was born. When Jeff came home, on the ride home from the airport, he started crying and said after observing his friend’s twins, something was indeed very wrong with Patrick and we needed to get him evaluated.

We were referred to a great doctor. In May or June of 1997, Patrick received the diagnosis. It didn’t matter to me that he got this diagnosis; my main mission was “Okay, what do we do now.” All I wanted to know is what we needed to do to treat this.

At the time he was diagnosed, the incidence of autism was 1 in every 10,000 children; the statistic today is 1 in every 91 children. It is at epidemic proportions. People will say, “This doesn’t affect me, so I have no reason to learn about it or even care about it.” It does affect every single taxpayer in this nation now and in the future.

So this gives you background information about what the first 15-18 months of life were like with our son. In part 2, I’ll discuss how we began discovering the links between vaccines and autism.


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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.


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Reflections on 2010

30 12 2010
 
 
 
 
 
 
 
 

Reflections of 2010

 

As we near the close of 2010, 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 a “it would be nice if…” list and downsized from there to a “why bother” list. As the year progressed and I saw opportunities for growth and change, of course 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.

Most of you who know me can already guess what the worst part of 2010 was for us.  Our relationship with Conroe Independent School District and its administrators. The corruption of these people runs deep, even a 2007 lawsuit brought against them for political racketeering and a violation of the false claims act.  

 The second worst part of 2010 was linked to that relationship and it was my health. Despite a pleading letter from the chief of rheumatology at three different hospitals in our prestigious Medical Center of Houston, a doctor who had treated me for 11 years, they continued to escalate the situation.  At one of our last meetings, I had a neurological event which landed me on the ground, unresponsive.  Do you think they called me an ambulance?  Nope.  They got a wheelchair, wheeled me in, let me rest for an hour and then wheeled me in with a wheelchair to the meeting, a meeting I have very little recollection.  Thank goodness both sides tape-recorded the meeting.  You can hear me slurring my speech, pausing for no particular reason, talking and making absolutely no sense, yet they still did not think anything was wrong.  They even knew about my pseudotumor cerebri and my brain aneurysm.  I still have trouble wrapping my mind around this.  I had no one with me and obviously was too impaired to advocate for myself.  Most of the rest of the summer I spent trying to regain my health.

For a school district who claims to have zero tolerance on bullying, they did not see any problem bullying the parents.

Not really the worst thing, but definitely an inconvenience has been these frakking kidney stones (now going on 3-1/2 months and 3 surgeries, anticipating having another conversation about more surgery on January 12).

 
 
 
 

The stent (aka) the coils of death

 

So now onto the awesome things about 2010.  By far, getting Patrick into a school that saw a child with potential and not limitations is at the front of the pack.  Let me give you an example of just how intellectually incapable CISD thought my son was:  At our meeting with Conroe in the spring, when we were talking about goals for the next year, when we got to his sign language goal, they suggested that 10 signs might be “too much” for Patrick.  I said, no, he learned 70 signs in 1 year (2002-2003) in their district with the right teacher who had the right training, so they can be learned, and again we got back to lack of proper teacher training and the desperate need for it to implement Patrick’s individualized program.  They felt that 6 signs for an entire year would be as much as he could learn. Within 9 days at his new school, he was signing 3 and 4-word sentences and had already learned 3 new signs. The best thing was to be able to drive to his new school every day and visibly see the progress both there and at home.  For the first time, we needed to catch up to them instead of me saying the school needed to catch up to us.

Another wonderful thing this year was my friends. Facebook friends, Twitter friends, friends from high school, friends from my childhood, new friends I’ve made this year, acquaintances I hope to develop friendships with, my immediate neighbors, friends I had lost touch with because I was always preparing for and sitting in meetings about my son that went on without end for nearly 5 years.  I was ready to join the human race again, and they were ready, able to willing to support us in the game plan for Patrick. Love wrapping you in a blanket, feeling wanted, needed and protected.   Through one of these friends, we were able to attend an Adam Lambert concert, a first for Patrick. 

 
 
 
 

Patrick's favorite: The laser lights.

 

One of the highlights of the year was getting to personally meet Lou Diamond Phillips, Matt Kelly, Raul Inglis, and Glenn Morshower at a screening of the movie Transparency at the Dallas International Film Festival. The coolest part is, after asking if any of his Stargate Universe fans were in the audience, and we “woo-hooed”, he recognized my face from my avatar and said, “PBMOM—NICE.” It made a tired mom fighting for her kid with autism refreshed and ready to go back and fight round 2 part 2 with those people. Gentleman, you were so kind to us and just class acts. (Side note, word is that Transparency is being released in 2011, so stay tuned. It is a action-packed movie. All my autism moms should buy one because Lou Diamond Phillips happens to be on the Board of Directors of ACT-Today out in California and has been from the start. I’ve found many sweet videos on You Tube where he is with the kids on stage. So please support his career and buy a DVD when it comes out because he is helping families with autism. 

 
 
 
 
 
 

LDP & I raise funds for FEAT-Houston

 This is Matt Kelly:

 
 
 
 
 

Matt Kelly, the producer (and original script idea)

 

 

 This is Glenn Morshower and me: 

Mr. Glenn Morshower and me.

One of the best moments is when Patrick came and sat down on the bed beside me. He took his arm and tapped my chest and said, “Mom” — not the sign for “mom” but said “Mom” (not Ma as he would do in the past while biting his hand). Tears of joy. I have been having many of those moments recently.

The kidney stones and reduction of stress in my life might have worked hand-in-hand in helping me to lose 20 pounds, a full dress size, without any exercise.   A definite highlight. 

After 18 years, Jeff and I have rediscovered ourselves after all the distractions of the school district were gone. That in turn led us to rediscover our marriage.

 
 
 
 
 

PBMom & PBDad 18 years ago

 

 Looking forward, 2011 will be remarkable. Patrick has made astounding progress in just 4 months; the sky is the limit. We will try to cultivate his newfound love of running into perhaps fun runs and see what happens. Or perhaps his love of planting things.

I hope to get my production levels up at work so I can make a part-time wage again at the very least. I hope to lose another 20 pounds by the spring when I need to attend a fundraiser and I’d like to purchase a very sexy dress.

And then the laundry list (so to speak) by cleaning this house from top to bottom.

And, joy of joy, for the first time, since I do not have to spend 6 months fighting with the school district, I can actually get started on my tax returns like Saturday, January 1.

I expect also that in 2011 the kidney stone issue will be PERMANENTLY resolved.

 At the end of January, we’ll be meeting the lovely Women in Sci-Fi up in Plano, Texas, a weekend of respite for Jeff and me. They have a great lineup and I am looking forward to spending as much time as I am allowed with each of them. Last time we were only gone 27 hours; this time, we’ll be gone a full 48 hours. We’ll see how well Patrick does with that.

2011 is already blowing my mind. Can’t wait to welcome the baby New Year.

Do you have any resolutions for the new year? Are you glad that something is over in 2010 now? Do you have any traditions to share? Post them away in the comment section.

Happy New Year to you all. May the year 2011 be all that you make of it.  

 
 
 
 
 
 

 


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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?


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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


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Keeping “Christ” in Christmas

14 12 2010

Today while going to pick up Patrick from school, I was tailgated by a car in the school zone. Apparently they didn’t appreciate that I refused to go faster than 20 mph. As I went to turn left, it zoomed past me, still in the school zone, I caught the “Keep Christ in Christmas” magnet on it’s rear-end. It made me laugh for two reasons: First is the complete irony of a person who claims to want to keep Christ in Christmas who cannot obey a simple law complete with a total lack of patience. I would bet good money that swearing was involved. Secondly, buying the magnet allowed someone to profit off our Lord and made you buy into the hype.

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

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?

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.

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. 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.


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The Memory Tree

12 12 2010

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. Last year, 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. This 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.

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.

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

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.

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. 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. It was then we began our golden retriever ornament collection. 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).

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.

Last year, 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 as I checked for this year’s prospective Stargate ornament.

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

The symbolic diary of our lives

What do you do with your tree? Do you have a theme? Fresh or artificial? Clear lights or multicolored lights? Blinking or steady?


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Princess and the Pea

11 12 2010

“Kidney stones themselves don’t hurt.” I had to suppress my laughter. My urologist truly does not appreciate what life is like as Princess and the Pea. Welcome to MY kingdom. Expect the unexpected.

In this kingdom, I once slit my finger open on some glass of a picture frame and some of the glass got into it. The ER physician said, “There, got it.” I said, “No, there’s more.” The blood pressure reading would suggest that I was correct. I asked him to please keep digging; I didn’t mind waiting as others triaged in, but this really, really hurt. He dug and poked and scraped a good 45 minutes until he found that very microscopic piece. He said, “Got it?” I said, “Yes, thank you.” The pain vanished, the wound was stitched and I went along my way to continue to rule over my lands.

I have weird autoimmune stuff and fibromyalgia developed after a bad car accident. I tend to be chronically, systemically inflamed. Things have improved greatly since 2005 when things came crashing to a head, landing me in the hospital for 5 days. Lifestyle changes were made. I have explored alternative medicine practices that some would consider on the fringe. Some have worked; the others have been expelled from the kingdom.

I’m pretty sure the kidney stones developed as a side effect of a medication I was taking for another problem; we did a scan before I was placed on the medication and I was free of stones.

It all started on 9/17 when a piece of a larger kidney stone (the mother pod) came off and decided to pull a Free Willy. That landed me in the ER and 3 days later in the urologist’s office where I demanded something be done immediately because I needed my life returned to my version of normal. I am ruler of the kingdom! Attend to me! I actually passed this stone in his office (exit, stage right).

Apparently I had two stones. The one in the lower pole of my left kidney measured 7 mm x 9 mm; the right one was in the upper pole, a mere seedling at 3 mm. At this point, I could not feel the right one at all. Surgery was scheduled for 10/1. The plan was to insert a scope, pull out what we thought was a stone obstructing (but it turned out to be something else; the stone the ER told me about had already passed), go up into the kidney and zap it with laser. Afterwards a stent would be placed with the idea of keeping the ureter open so the stone material could pass. Going into the surgery, I had images in my head of the pig lizard on GalaxyQuest. I wondered if the laser would be similar to the mining laser used to free Liara in Mass Effect. The stent will be forever renamed the coils from hell. They are banished from the kingdom.

Confidence was high that the stone was “shattered.” On followup, it appeared it was still 6 mm. I had to wait the appropriate amount of time to allow my body to pass what it was going to pass. My chronic inflammatory response kicked in. I have affectionately called the area under the left breast to my waist from the middle of my stomach around to the spine the “stone zone.” It can no longer be touched without pain. I’ve begun to get a right-sided stone zone as well. I wonder if this is a boxer feels after kidney punches? If so, why do people box?

During this time, my army (my antibodies) thought there was still a foreign invader in the land and I developed an infection. Say what you will about the horrors of kidney stones: I’ve gone down one full dress size. No pain, no gain.

With the infection cleared, I was now free to embark on another vacation destination of my choice. How about ESWL (extracorporeal shock-wave lithotripsy)? I’ve heard the place is seismic. Despite the effort and passage of some debris, the radiologist declared the left kidney stone to be still 6 mm. When it comes to patience with my son with autism, I have an abundance. With all other things in my life, not so much.

I’m now scheduled for the 3rd surgery on the left one, the 1st surgery on the right one coming up on December 21st.

I was confused about the use of the word “shattered.” The visual picture that comes to my mind is the Death Star in Star Wars. Apparently not. It is more like Patrick removing his wrapping paper from his presents (see An Autism Christmas).

This kidney stone is taking on the characteristics of its host (me): Obstinate, determined, likes to dwell in deep, dark places, loves the water (it must be a Pisces), sedentary. It must also like video games because the left side plays Pong with my kidney every day. This could be a new Syfy horror flick with a Saw-like twist in which it drives the host completely insane to the point that the host wants to open their own kidney just to remove it. Then, the stone is absorbed by whoever discovers the dead body, torturing its next victim. Where is Neo (from the Matrix) when you need him?

All my alternative medicine approaches to this pain have failed me. In the entire 11 years I have had fibromyalgia, there was only one time when I wanted to cut my legs off and the shower made me wince in pain. There was only one time when the doctor had to put me on 2 weeks of around-the-clock pain medication to break the pain cycle and that actually worked. When I delivered Patrick, from the time my contractions were about 8 minutes apart until the time I delivered him was a full 29 hours without drugs. Even after my car accident when I was in physical therapy for 4 months, daily for 6 weeks, I dealt pretty well with the pain. Here are some things that we have tried:

BodyTalk: Combines the wisdom of advanced yoga and advaitic philosophy, the insights of modern physics and mathematics, the energy dynamics of acupuncture, the clinical findings of applied kinesiology and western medical expertise. I’ve asked the kidney stone for its agenda. I’ve asked the kidney stone what it needs to expel peacefully from my body. Apparently I keep getting the answering machine.

Visualization: I’ve tried different images: The Death Star from Star Wars; shooting the Reaper-Human hybrid final boss in the XBox game Mass Effect 2 on insanity level. I’ve tried to think peaceful thoughts, but all I get is “get the hell out of me” pictures. I’ll have to work on some peaceful thoughts. I thought about the birthing process, but no, that would not work. After I had Patrick, I told Jeff he would have to have more babies with another woman because I was not going through THAT again.

Changing the pH: Lemonade (without sugar). Has not worked to make the stone any smaller yet.

Postural change: Drinking water about 30 minutes prior and then laying with my head/neck on a bed, my body on pillows so that my head/neck are lower than the rest of my body. Repeated several times a day. Perhaps I need to go bungee-jumping. One of my friends said their friend passed a stone after going on a rollercoaster. The doctor recommended jumping jacks, but I’ll have to get a better sports bra.

Craniosacral therapy, visceral manipulation, myofascial release, energy work, Psych-K–the list goes on.

So I turn to you, my readers, my knights in shining armor: Do you have any other ideas the Princess could try to get some relief? I’m ready to abdicate the throne here.


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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.


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Matthew’s Christmas Snow

7 12 2010

Matthew’s Christmas Snow

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 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 a baptism could be arranged, but no one returned my call; I felt abandoned.

Although soured on organized religion after this, I still had a 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. Of course I knew he was in heaven, but there is other level of you that wishes you could have a conversation with them. I never even had the opportunity to hold him because he was not whole. I remember just touching my lower abdomen, and said goodbye, as a tear fell from my eye as they put my 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 it. Jeff reminded me that Long Island rarely got snow. And 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” 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. 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 that 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. We were sitting in the den in the early evening. The den was connected to the garage. The four of us sat there, watching something Christmas-related on TV. We heard the garage door open, expecting to see one of his sisters walk through the garage door to the den. We waited…and waited. His parents wondered what was keeping whoever it was that just pulled up. 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 supposed garage door opener, 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.

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.

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.

Jeff’s parents watched us thinking we had absolutely lost our minds.

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. 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.


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