Stop Supporting Autism Speaks

2 04 2015

Autism Speaks Do Not Support BoycottMany people, including myself in the past, donate to Autism Speaks thinking that this corporation is the best vehicle to help support autism research and help those families who are financially crippled, who need respite desperately, who had to quit their jobs in order to care for their child, a family who may have gone through divorce because autism is TOO stressful on a marriage, etc. The physical and emotional toll is great on the entire family. Some parents have multiple children with this disease.

In about 2009 or 2010, I started paying attention to the organization that was getting all our hard-earned dollars.

John Elder Robison was the only person with autism on a board at Autism Speaks.  He resigned from the Science and Treatment boards on November 13, 2013. Read his post here. In summary he said that he could no longer be part of an organization who would not listen to his counsel. He felt Autism Speaks needed to be an organization that helped people with autism and not an organization who sought to cure him of something that is his identity. I do whole-heartedly understand this point of view. Autism is a full spectrum disorder. My son lives in a state of hell and is at risk for being abused because he is nonverbal and cannot read or write. Local author Elizabeth Moon, a mother of a person with autism, posed this very dilemma in her book “The Speed of Dark.” If a cure was available, would you take it? I would love my child no matter who he was.  If life could be easier for him, I would give him that cure even if that meant who he now disappeared. I do, however, appreciate that those people with autism who are able to share an opinion on that would not want to be changed.  I respect the feelings of the families of those people who support them.  It doesn’t mean there is a right or wrong point of view; we each have to make a personal decision about our feelings on this matter.

In March of 2015, Autism Speaks invited its 168,000 Twitter followers and 1.5 million Facebook fans to use the hashtag #AutismSpeaks10 to share how “AS has touched your life” to celebrate their 10th anniversary. Instead of receiving gushing responses on how their lives were helped, people with autism and their families took to Twitter to have a word-war with Autism Speaks saying that they don’t want to be cured and that they want their resources to making their lives better and not to “cure” them. In essence, Autism Speaks does not speak for them. Autism Speaks had delusions of grandeur if they expected people to respond because they have not helped many people at all. Autism Speaks helps itself.  Only about 4% of the money you send to them actually goes to help them.

The Judge Rotenberg Center in Massachusetts is under investigation by the Department of Justice and the FDA for the use of torture (see page 84 of the United Nations Special Rapporteur on Torture). The State of Massachusetts and disability rights advocates have been working to shut this facility down. Even despite this information coming to light, Autism Speaks has allowed the facility to recruit new admissions from families seeking resources at their fundraising walks. If you don’t know or remember about this story, here is a clip from it and a link to the 26-minute story of someone who actually previously lived there and the reasons she was given shock treatments.  (The individual has disabled embedding so this link will go directly to her YouTube video).  I am warning you–this video below is awful to watch, but how one can support Autism Speaks when they support this center?

Show Me The Money

In closely examining the 2013 tax return Form 990 and independent financial audit, Autism Speaks took in a whopping $122,141,069. Of that, $15,300,709 went to research (or 12.5% of your money) and of that amount, only 1% goes towards research on the needs of adults with autism. Of that money, $5,532,344 went to projects associated with board members of Autism Speaks (or 36% of all grant money awarded). Families received only $4,631,690 (or 3.79%) of the money you gave to Autism Speaks. Advertising (for more of your dollars) cost you $52,229,994 (or 43% of their budget). Salaries took $18,771,965 of those donate dollars (or 15.3%) and $4,528,226 in benefits and payroll taxes (or 3.7% — as much as they give to families). Thirteen of their board members make six-figure salaries. See pages 9 and 10 on their Form 990 filed with the IRS.
The problem with the Autism Speak walks is that they do not give any of that back to the local communities. Money that people are giving to support people participating in that walk goes to Autism Speaks big machine. With state budgets cutting funding to people with disabilities in general, and is usually one of the first things on the cutting block because of horrible stereotypes of people with disabilities, money you give to Autism Speaks means they might lose those dollars if you only knew about their organizations. Local organizations usually are run by volunteers who draw no salaries and the majority of their resources going directly to helping in some way.

Board members have perks, too, like getting funding from Autism Speaks for their pet autism projects. Per Autism Speaks Financial Report of 2013:   “AS has arrangements to grant a portion of the net proceeds of certain fund-raising events to partners. Amounts representing the partners’ share of net event proceeds as described below are reflected as grants in the accompanying consolidated financial statements.

Event Partner Grants
Speeding for a Cure The Gillen Brewer School — 50% of net proceeds

Atlanta Walk The Marcus Institute — 50% of net proceeds

Phoenix Walk The Southwest Autism Research &  Resource Center (SARRC) — 50% of net proceeds

Westchester/Fairfield Walk Center for Autism and the Developing Brain at New York Presbyterian — 15% of net proceeds

Winter Ball for Autism New York Collaborates for Autism — 50% of net proceeds

The Atlanta Walk had net proceeds of $542,000, 50% of which was granted to The Marcus Institute, the co-founder of which is an AS Board member.

The Westchester/Fairfield Walk had net proceeds of $968,000, 15% of which was granted to the Center for Autism and the Developing Brain at New York Presbyterian. An AS Board member is on the Board of Trustees of New York Presbyterian Hospital.

The Winter Ball for Autism had net proceeds of $2,682,000 in 2013, 50% of which was granted to the New York Collaborates for Autism, the co-founder of which is an AS Board member.

Five members of the Board of Directors of AS and two management employees are affiliated with institutions that received funding from AS. At December 31, 2013, AS had grants payable and commitments to these institutions totaling approximately $5,532,344. During the year ended December 31, 2013, AS’s expenses included approximately $3,669,960 related to awards granted to institutions affiliated with an AS Board member or management employee. Certain members of AS’s Scientific Advisory Committee and Scientific Review Panel, which are involved in the grant appropriation process, are also associated with institutions that receive funding from AS.”

Why You Shouldn’t Light It Up Blue

We have enough “Autism Awareness.” In fact, it has moved into overkill to the point where people roll their eyes when they hear someone say, “My child has autism.” They see a child in a meltdown mode in a store because of some sort of sensory overwhelm and they shake their heads or mumble to another person in the store or share “looks” about bad parenting. People with autism who have the ability to express themselves do not like Autism Speaks. Parents who have had children with autism for awhile have learned about Autism Speaks and will not support them because of their lack of assistance. The “Light It Up Blue” campaign is a direct advertising campaign from Autism Speaks. When you buy a blue bulb from Home Depot, you are supporting them. The co-founder of Home Depot is a board member of Autism Speaks.

I would like to see more “action” come from this organization instead of raising funds to support themselves.

If after all of this information you decide you still want to contribute to Autism Speaks that is your business. All I want to do is inform people so they can make a more informed choice of where their hard-earned money may go.

My son Patrick.

My son Patrick. The center of my universe





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!

 

 





Series Finale for Touch on Fox

11 05 2013

On Thursday, May 9, 2013, Fox Broadcasting confirmed what we all had been expecting: Touch would not receive a season 3 renewal. Friday, May 10, 2013 would be the series finale.

I think we could see the writing on the wall from the beginning of season 2. It was supposed to be aired in October 2012. Then it got bumped to January of 2013. Then it was pushed to Friday, February 1, 2013. Then it was changed to Friday, February 8, 2013. People in the science fiction community believe the Friday night slot is the place where shows go to get the final nail in the coffin. It was true for Fringe.

There was very sparse advertising for the show’s premiere. The shows the network had more faith in, like The Following, The Mindy Project, Ben and Kate, and New Girl got far more advertising both on-air and with the use of social media.

The first season struggled. Although 12 million viewers tuned in to watch it on Monday, a sweet day in the past for Kiefer Sutherland when he was on “24”, viewership quickly declined and it was moved to Thursday night after Idol, hoping to give it an American Idol bump. Fringe had that same progression. Monday to Thursday to Friday. For years now, people have been critical of the antiquated Nielsen structure to determine number of viewers and to target 18- to 49-year-old men. As a woman, that is really insulting to me. I have as much buying power as my husband, if not more. People have new viewing habits. The days of an actual TV in a home are limited as people go to the internet to watch TV shows now. But the methods advertisers base their rates are still built on the old model. In February, it was reported that Nielsen was going to roll out a new system. It would include people who watch over broadband, XBox, Playstation. Then next phase of the program would include any type of video viewing. It is also adding a new viewing measurement for social media to include people participating in tweeting and those exposed to those tweets (I am thinking this sounds similar to Klout). But it is too late for many of our cult favorites. Fringe would have benefited greatly from the massive fan support on social media.

The story also struggled. The biggest mistake was calling Jake autistic. After the first episode, many of my friends tuned out, turned off by the unrealistic portrayal by Hollywood AGAIN of their beloved children. At first, the show was about finding people who were hurting and help restoring happiness and wholeness to their lives. Shows are often a reflection of the times we live in. I think this is why The Following has had tremendous success–it is a very dark show. Then mid-season, Touch started building into it a mythos that sounded promising but moved a little bit too slow for an audience who needs to be on the edge of their seat an entire show to go out and convert others to watch it. When season 2 was introduced, people who gave up by the end of season 1 did not care to tune back in to see all the wonderful changes that were made. The story pace was quicker. It was building the mythos quicker, resolving things (like finding Amelia) in a timely manner, introducing an element of evil vs. good in the plot. Without a massive campaign saying, “Come try the show out again.”

Shows struggle in their first year to find their footing. I know this is true of Stargate Universe. It came from a franchise that had phenomenal fans and a lengthy history of good ratings, 10 seasons of Stargate SG-1, 5 years of Stargate Atlantis, 2 Stargate DVD movies. With the success of Battlestar Galactica, they wanted to try a storyline they had really wished to pursue on Stargate Atlantis but could not–the heroes were trapped without any way to contact Earth or the original SG-1 team for help. By the end of season 1, Stargate Atlantis knew it needed to connect back to Earth. In Stargate Universe, they used a unique way to do this. There was an active campaign from within the Stargate community to boycott the show and point out all the flaws. Free speech still governs our society and they had the complete freedom to express their opinion. Whether it played as a factor in the ultimate demise of Stargate Universe remains unclear. I do know season 2 of Stargate Universe was better than season 1. Season 2 of Touch was better than season 1.

I was concerned for the finale. In the last episode, Amelia and Jake had been kidnapped after Martin’s car was hit. Would we have a finale where someone’s life hung in the balance, and the viewers would not have resolved whether or not a character would live or die? Would they be endings that would leave us at peace? Would the people in season 2 who were evil or sometimes evil and sometimes good receive justice? Would a new threat be introduced? Would Avram be found or locked away somewhere that we will never know if he is freed?

After watching the show, I have a feeling Tim Kring saw the possibility that this show would not get a season 3, and he decided to write the final episode, giving emotionally invested fans a story to leave in peace. He gave us just that. And the ending was a sweet acknowledgement of the first episode with the same narratives. I did cry at the end. However, it was not like the finale of Farscape where I was so disgusted with the abrupt cancellation and the inability of the writers to give fans a proper ending that I talked about it for years and, in fact, boycotted the network (in my narcissistic narrow world, I thought it would matter) for years, missing out on Stargate SG-1 for quite awhile.

Coming on the heels of hearing of Touch’s demise was the immediate rumors that Fox Broadcasting is now in talks with Kiefer Sutherland about reviving “24” in a “limited fashion.” Some on the internet think it might be a 13-episode series. Some think it might be the movie he was hoping for. For others, they are speculating that a miniseries might work. With the number 13 episodes, I now wonder if they plan for this to be tied in with The Following next year given its phenomenal ratings as that would be about the number of episodes. The first episode could give us background for the new story and then the episodes could still be in a full-day fashion with each episode being: “The following takes place between 9 a.m. and 11 a.m.” which would be more realistic in Los Angeles or New York traveling times (or wherever they plan for it to take place). Twelve episodes of 2-hour increments would give us “24”.

And so it goes….another well-written show that goes into our history. I want to thank the cast and crew for producing a type of show I was craving, something I cared deeply about. But in the end, thank you for giving us a happy ending.

TouchbutterflyThankYou





April is Autism ACTION Month

1 04 2013

April is Autism Awareness Month. Phooey. It needs to be Autism ACTION Month. We have had enough awareness. What would help us the most (are you listening Autism Speaks?) is an Autism ACTION month. We need action to help the families who are suffering RIGHT NOW, who are financially crippled, who need respite desperately, who had to quit their jobs in order to care for their child, a family who may have gone through divorce because autism is TOO stressful on a marriage, people who have had to take their children out of private facilities because insurance would no longer cover them, etc. The physical and emotional toll is great on the entire family. Some parents have multiple children with this disease.

Medicine and psychiatry have been debating the causes of autism for more than 60 years now yet we have no concrete answers and the numbers are rising. When people tell me that it is 100% due to better diagnosing, they are right to a SMALL point. But listen up! When Patrick was diagnosed (in the summer of 1997 when it was still 1 in 10,000), when I would say “my child has autism” to people, they would say, “Well what is it? What causes it? I’ve never met anyone with autism before.” Indeed in all of my life up until Patrick was diagnosed, neither had I. Now when I’m out at the mall or in a store, Patrick is not the only person there with autism. I see it. I can pick out the adults and kids who obviously have it; I’m sure there are others I would pick up on if we had a conversation.

If you all are concerned about Social Security going bankrupt by baby boomers, you should be TERRIFIED of what is going to happen when Patrick and all the children behind him grow up and can’t get jobs because schools chose to not educate them. It is the only neurological disease that is not covered by health insurance and we still fight that battle just to try to get our children covered. If they get treatment, many of these children will go on to become taxpaying adults able to hold jobs. If we don’t, they will test the social support system of the government like nobody is ever imagining. The only reason why it is within the realm of psychiatry is because of its psychiatric features. But there are many physical diseases that have psychiatric features.

I am not a fan of Autism Speaks. They are not good stewards of your hard-earned money. Here is a copy of their 2010 tax return. People are generally shocked when they hear me say this because they think Autism Speaks is the gold standard of charities.  Only about 4% of what they get actually helps families. They do not have anyone with autism on their board of directors to help guide them in what people with autism need directly from the people they are supposedly serving. While it is great to use some funds for research for finding the cause, they will never find possible prevention if they are closed off already to some research that does point to vaccines. They lobby in Washington now and they can’t have a cozy relationship with the US Government because the US Government can never admit this. They have to take the party line that vaccines do not cause autism….although there has never been a study that studied the cumulative effect of all these vaccines…and the US Government has been awarding some families who have been harmed by autism under the disguise of encephalopathy which just means damage to the brain. And autism IS damage to the brain. I don’t like some of Autism Speaks advertising either. It offends me.

autspeaks graph

So here are my suggestions for this month:

Wear your blue on April 2, change your light bulbs blue if you want, dye your hair blue if you want. In that moment you can bring awareness.

Then help with action.

Donate to a local group. This way you know your hard-earned money is staying in the community and going directly to help the children because most of the people in these organizations are volunteers. Here are some local groups I can vouch for that will be good stewards of your money:

FEAT-Houston (Families for Effective Autism Treatment): FEAT-Houston is a non-profit organization that provides information and training on treating individuals with autism spectrum disorder using techniques based on applied behavior analysis (ABA). We sponsor workshops, meetings, a newsletter, and regular emails. Our tuition reimbursement and conference stipend programs help support the development of ABA resources in the Greater Houston area and make it possible for more teachers and parents to learn about effective teaching methods for children, teens and adults with autism. We are supported primarily by individual contributions and volunteer efforts.

FEATHouston

F.A.C.E.S.: My son was helped by these people. They gave us a grant that allowed Patrick to stay at his school where we reached a point where we might have had to take him out of Including Kids. The Foundation for Autism Care, Education & Services (FACES) is a non-profit 501c3 foundation founded by Larry and Pat Wallace. It is the mission of FACES to raise funds to directly support and promote education, service and Applied Behavior Analysis (ABA) therapy for families faced with Autism Spectrum Disorder. The funding for the foundation comes from both public and private party donations, as well as fundraisers involving private individuals and organizations.

FACES

Desperate for Respite: desperate for Respite (dfR) is a non-profit charitable corporation organized exclusively for charitable and community development purposes. Our corporation exists to provide support to caregivers caring for special needs children, dependent adults and their families in the Northwest Houston area, that face the challenges associated of caring for an individual with some level of disability; raising awareness and educating the community by developing relationships and community responsibility for supporting caregivers and their families.

DesperateForRespite

Houston Autism Disability Network: Where Hope Takes Flight! Mission: Information & Resources for Autism Spectrum Disorders & Special Education assistance. Networking meetings for parents & professionals each month, special seminars & annual conference. HADN strives to be a unifying, non-competitive resource for Houston area — in helping to host events and inviting speakers to share their resources & information!

HADN

Autism Society of Greater Austin: The Autism Society’s mission is straightforward: “improve the lives of all affected by autism.” In Central Texas, the Autism Society of Greater Austin strives to achieve this goal in several ways: Advocating for the education and training of parents and professionals involved in the educating and caring for persons with autism; helping develop a better understanding of the challenges of persons with autism and their families by serving as a clearinghouse for information about autism; supporting families and professionals through monthly meetings, workshops, on-line vehicles, and printed material; we also sponsor events that are just for fun–come join us! The Autism Society of Greater Austin is a 501(c)3 organization that depends heavily on donations. Please know that contributions are tax deductible and will be used locally.

AutismSocietyAustin

If money is difficult for you right now, then you can help with your time and talent. If you know a family with a child with autism, offer to babysit for just 2-3 hours. They really need a break. Offer to take the child out with your family on an outing you are doing. Schedule a time to bring lunch over and sit with us for an hour or two and listen to us. We might need to talk about things going on, or perhaps we would prefer to listen to what is going on in your life to keep our minds off of things for awhile. Support legislation that helps autism, which also includes Medicare and Medicaid for those who are adults with autism. Support employers who hire people with autism in their company. There are so many ways you could help in action.

So wear your blue April 2nd and move into action!





Touch Recap: Safety In Numbers

28 05 2012

(A bit behind so I’ll keep these brief so I can be current before the season finale). I thought I’d try writing this up in arcs, but since they are interconnected, it makes that difficult. Also thought I would maybe sum up the last 6 episodes but that was not going to work, so back to the old format.

This episode’s important number was 3287 and what is up with door #6 at the Board and Care?

The opening starts with a reflective thought of evolution, “If a species wants to survive, it has to prove it deserves to.” Jake (David Mazouz) talks about how fire ants can hold onto each other like a living raft waiting for the water to recede and how did that all begin that they knew to do that?

At The Claremont, address 3287, a man (Rob Benedict) places a paper at the door. Another man picks it up. Jake is sitting at the door with the number 6 on it (room 122 on the placard). Jake narrating the dialogue lines: “What if you were the one who knew what needed to be done but you had no words? How do you make the others understand? How do you call for help? ”

We’ve been experiencing this with my son. He is nonverbal. We try a communication system. He seems to have this burst of learning. Then he refuses to use it, and it leaves him. First it was sign language, then others in between, and last year, it was with a program called Proloquo2go (pronounced PRO-LOW-QUO-TWO-GO) for the IPhone/IPad. He seemed to just excel in it, and now he gets agitated whenever we ask him to use it to communicate. He can’t ask for help. All he can do is communicate through behavior. Let’s just say he has been VERY LOUD the last few months.

Back to Touch, Jake places a call to Martin (Kiefer Sutherland) who hears static on the phone but knows Jake needs him. Like a Bat Signal. Martin opens the door to Jake’s room, but he’s gone. They find Jake at door 6. Jake stuffs the paper into Martin’s coat and returns to his room, but gives him direct, sustained eye contact (something Jake does not do). The picture is a dragon.

Martin visits Professor Arthur Teller (Danny Glover). Martin asked if he would spend his life chasing down numbers for Jake. Teller reminded Martin that Jake feels the pain of these threads, real physical pain. The professor warns that Jake has a higher purpose and he won’t be the only one that notices (foreshadow for future episodes).

Meanwhile in Soweto, South Africa, Grace (user name Grace22) (actress Yetide Badaki) takes a career aptitude and placement test (Version 1.6) in her village. Her ID to complete the test is 3287. Baruti (Darrell Luke) tells Grace she needs to leave her friend, Sauda (Khanya Mkhize), and take a job in the city. A young boy watches from the window. The two boys, Thabo (Dante Brown) and Farai (Kwesi Boakye) put a bottle cap in the window. I’m guessing they intend to go back later.

Grace and Sauda in Soweto

The Worldwide Dance Battle is on the TV at the Center and Jake focuses in on it. The audience would be picking a winner.

A woman in a red dress (Olesya Rulin) goes through security at the dance battle. She is supposed to meet someone outside a tent. The security guy (Brett Wagner) is very kind to her.

A taxi hits a homeless woman who we are led to think is Clea’s mom (Taxi 4R21) in front of Martin. The man from the beginning of the show steals a book she has. A nurse comes to attend to the woman (Marci Michelle). Martin runs after him.

It’s Marci Michelle!

Meanwhile the Beastmaster (Stephen “tWitch’ Boss) is on the stage, dancing to “I’m Sexy and I Know It.” I adore tWitch from So You Think You Can Dance. He is among my top 20 favorite dances ever on the show (especially the one with Alex). I digress.

Twitch from So You Think You Can Dance.

Back in Soweto, a violent man named Fumbe (Ike Onuoha) is with Grace’s friend Sauda. Fumbe has beaten her. Grace wants her to leave. Fumbe freaks and strikes Grace to the ground.

Martin catches up with “The Invisible Prince.” He shows Martin that the book is his; the woman stole it from him. The book is similar to what Jake gave Martin in his pocket. The Prince is just like Jake but he can speak and is an adult. He tells Martin, “The dragon is loose.” Was Martin looking at this man concerned that Jake would go insane as he aged?

Martin and The Invisible Prince. Is this Jake’s future fate?

Jake is playing with the red car again. Clea (Gugu Mbatha-Raw) is doing RFFC’s with him (applied behavior analysis term for receptive by feature, function, class). She takes the car to try to get Jake to give her eye contact. He grabs the car, giving her a side glance only, and walks downstairs to door 6 again. He slides the car under the door.

The kids in South Africa have aspirations. They want to compete in this internet dance battle.

The Prince is upset that he almost missed changing a light at a corner for a woman to cross without waiting (Kate Fuglei). He then goes and buys a red flower and puts it on the bus bench for a different woman (Janeline Hayes). The Prince pauses in front of The Claremont for a moment before moving on. He tells Martin that he tried to slay the dragon with a magic sword but failed. He offered it to The King and he buried it deep within the Mountain of Clare (I’m guessing The Claremont) behind a wall of stones. The final battle was tonight. Then the two women arrive at their destination together in a building with a red dragon sign on the outside: Morton Starling Finances.

Izumi (Satomi Okuno) and Miyoko (May Miyata) from Japan are at the Coachella Valley festival because The Morticians will be playing. They’ve been in the running thread since the pilot. They converse with the girl in the red dress using a translator app on 2 phones (one translating to English what they said in Japanese; the other translating her English to Japanese). Clever! Apparently the red-dressed girl got stood up by a guy she met online (imagine that). The Morticians will be playing in 15 minutes, so they leave, but one phone is left behind. This is the phone that has been roaming the world since the pilot episode in January.

Izumi and Miyoko from Japan here for the Morticians, and the girl in the red dress.

The women who the Prince was connecting had a conversation at the elevator to which Martin listens. They are plaintiffs in some class-action suit and they are about to settle. They talk about “Roger King” and Martin knows that name. Martin pretends he is representing Roger King to go to the meeting. A journalist, Rush Middleton (Graham Hamilton), who was a former colleague that Martin would request bring him coffee, saw Martin and thought he was there in a journalistic capacity. Martin thinks he can get Roger King to talk, so Rush gives him the address: 3287 Avondale (Just FYI, The Claremont’s real address in NYC is 229 East 12th Street, New York, NY 10003).

Clea asks Sheri (Roxana Brusso) about room 6; Sheri says it is empty. A phone call from 212-920-6922 (reverse white pages says this is a phone number, a landline in the Bronx) comes in to Clea’s phone. It is her mother. When she answers, she is told her mother is in the hospital.

Martin goes to The Claremont. Charlie King (Vince Grant) Roger’s son, tells him Roger is dead. When Martin says, “The Invisible Prince” an open door awaits. The Invisible Prince was a bedtime story that Roger used to tell. The Invisible Prince had to do good deeds in secret or they would not count. Charles says Walt (the Prince) was a genius at numbers and produced a financial system that made Morton Starling billions. Charlie’s son Matt (Elijah Nelson) is also watching the internet dance battle. He was “The Domin8tor”. Because he bowed out of the competition so Charlie and Martin could do some internet research, it led to an opening for 4Soweto. But I’m getting ahead of myself. (Just FYI, the web address on the computer is not a real site). From the “Invisible Prince” story, Charlie says it was the magic sword of truth.

Clea’s mom apparently is schizophrenic (supposedly; I’m wondering if she isn’t like Jake). She asks the nurse if the woman was hit by the taxis near the tracks at Queensboro Plaza. The nurse (Deidrie Henri) says yes. Her mother is in room 5290, but ta-da, it’s not her mother. The woman stole her mother’s phone.

Sheri recognizes Teller at the Board and Care. Teller asks for a tour because he is considering placing a patient there. She obliges a short tour.

Martin finds a box requiring a combination, but Charlie does not know it. The audience knows 3287 will open that lockbox. Documents that were never previously opened are in there–the magic sword of truth. It’s now 5:43 p.m. and Martin has to RUN to get to the New York Herald–16 minutes to go 22 blocks. If this is possible is if this is a north-south street or an east/west avenue in New York City because the lengths are different. A 20-block street equals about a mile. And that’s not counting traffic lights.

Jake begins to hum and catches the attention of Sheri who thinks he is in pain or something. Teller observes. It gets louder. Sauda is being beaten in Soweto and is screaming. Martin is running. Grace rhythmically drugs on a pot. Jake is screaming (to what Clea previously described about her mother screaming when the trains rushed by that scared the crap out of her). The women in Soweto come out with their pots and rhythmically drum in solidarity to support Sauda.

Thabo did not show up, so Farai dances instead. The crowd goes wild. They show room 6 again. The red car gets pushed back out into the hallway. Sheri lied about it being empty.

Walt King wrote a memo showing Morton Starling the flaws in his financial model design and the company exploited it to make millions. Rush does not understand Martin’s intention. Martin replies that it was the same reason he told him to get him coffee everyday–because he knew Rush would be a great reporter. Rush offers Martin a by-line, but Martin refuses, saying it would be their little secret, otherwise it would not count.

The girl in the red dress meets the Beastmaster who just lost to the 10-year-old in the dance competition. They bond over the videos from the cell phone that has traveled the world.

Martin meets up with Walt and tells him they fixed the thread. The Invisible Prince then knights Martin as the Invisible Knight. Martin relays a message that Charlie and his family welcome him to come home any time he wants.

A montage begins: Clea sees the red car in the hallway and knows Sheri lied. Teller creates a file on Jake. The reporter on TV (Craig Stepp) shows that Main Street won out over Wall Street. The 2 women from the lawsuit toast their victory.

The Invisible Prince watches his brother and his family come home to the Mountain of Clare, his face showing the longing to be with them but knowing he has a greater purpose to fulfill. Sauda is taking a computer test to be able to move to the city with Grace and rise above the domestic violence. Martin tucks Jake into his bed donned with red sheets and a comforter of red with white circles (patterns). Clea returns Jake’s red car to him. Clea sees herself in Martin’s actions and promises to be more understanding.

Martin starts a bedtime story for Jake about The Invisible Knight who served The Silent King and together they helped people they did not even know were there. And The Silent King closed his eyes and went to Dreamland.

Jake listens to the The Silent King story.

What I adore about this show is the thoughtfulness they put into providing clues for us. Like the eye contact Jake gave Martin to communicate how important this task was. The running theme of the color red–the car, the flower, the dress, Jake’s sheets/comforter, the red dragon logo on the company’s building. When we were first working with Patrick, we noticed he stopped on the color red of his One Fish, Two Fish book. The group of people working with him asked, “How can we use the color red to help him?” They came up with these thoughts: Use red lipstick so that he will look at your lips when you are speaking. Eat something red (popsicle or lollypop) so he can see movement of the tongue. Use red to put near your eyes so he will give greater eye contact. But I think the show is emphasizing the red string of fate. I wonder if Jakes gets any peace from the pain in the dream state. What I think they can improve upon is uberfans who adored Lost for the same reason: The clues, trying to figure out the larger story. Perhaps they can put more real-life clues into the show. For example, on “24” one of the times they had a cell phone number, fans from 24 actually called the number and got a message from the actors. What if one of the numbers could provide the uberfan with additional exclusive clues that they would not get anywhere else. Lost created a whole web presence built about its mythos. I think the producers of Touch should do the same. It helps us to experience the show on a different level than just viewing. It is about participating and making the global connections.





Celebrity Corner: Comicpalooza Houston 2012

27 05 2012

By Hilda Clark Bowen

Compicpalooza2012

Expecting 15,000 people this weekend, Comicpalooza’s mission “is to provide the best and biggest annual multi-format pop culture convention in the southwest region of the United States, serving not only the fans of comics, science fiction, fantasy, video and table top gaming, anime, music and film, but also as a trade show and showcase for the studios, publishers, and manufacturers in those industries.” Now in its fourth year, it is still showing some growing pains. People were complaining about the length of the line just to buy tickets to get in. Some were complaining of the disorganization of lines for people with prepaid tickets versus those waiting to get in versus those with VIP passes. While some truth may be in those statements, coming this far in 4 short years is phenomenal. The community needs to continue to support this group by attending and by providing them with some constructive feedback.

Last year I found out quite unexpectedly that Houston had its own convention. Here I was spending money to go out of town when I could support a wonderful event in my own backyard. On my Twitter feed, some in the Houston, Texas area did not know it was going on this weekend. It’s not too late. There is one more day. Let’s spread the word for next year. Memorial Day weekend seems to be the date, much like Dragon*Con is over the Labor Day weekend.

This was my second convention. Last year I attended Women of Sci-Fi in Plano, Texas. When I saw how empty the convention center was (because I lucked out and got in the right line at the right time), I immediately went to work on my new collection of pictures. I got the most important things done first. I wanted to tell the people who affected my life in some way over the years how much I appreciated them. Why the urgency? I did this because my 16-year-old son, Patrick, who is severely affected with autism and other disabilities, was having an enormous amount of difficulty lately. Being nonverbal, he is really unable to share with us what is wrong–like if he has a headache, stomachache, etc. The last 3 days have been rough. His communication comes out in the form of behavior and not the good kind. I was unsure if our respite care worker was going to be calling for us to come home, or worse yet, that he had a seizure, which might also account for his behavior of late.

And you wonder how a cute kid like that can go from Gizmo to Stripe in a matter of 30 minutes? The pretty lady on the left was his teacher this past year (she actually stayed an extra year to work with him–isn’t that sweet?)

First stop was to Christopher Judge. Stargate has had a profound impact on my life. I was a bitter Farscape fan, pissed off that the SciFi Channel (now Syfy) cancelled Farscape to take Stargate from Showtime. Thinking that my boycotting the channel would make any difference whatsoever, my narcissism prevented me from discovering a terrific show for years. Yes, years. When my 500+ satellite channel offering one evening revealed NOTHING ELSE to be on, I started turning it to this show for “background noise” while I was working. I don’t remember which story it was, but I remember one show caught my attention, and slowly melted the bitterness in my heart. I caught up on all the episodes pretty quickly.  On March 25, 2009, I joined Twitter because Stargate Universe was in production and Joe Mallozzi said on his blog that David Blue was there. I wanted to be able to hear all the details about the new show, so I joined. The rest is history. I have made more than 165 Stargate-fan connections, have met some of these people, and some of them have become a tremendous support system for my personal life.

Christopher Judge

Turning the corner, Rachel Luttrell from Stargate Atlantis was not there yet, but Richard Hatch was. I became a fan of his at the tender age of 7 or 8. We were living in Hillside, New Jersey at the time and my sisters and I would come home from elementary school for lunch (you know, back in the OLD days). “All My Children” happened to be on. There were no DVRs let alone VCRs so if you weren’t live-viewing, you missed it. My sisters needed to use my body as an antenna to get better reception because the rabbit ears with the rotary dial weren’t working all too well. They were cruel to me like that. Yes, I cried when they said Philip Brent died in Vietnam, making the war as real as it possibly could to a child that age.  I grieved with Tara Martin grieving for Philip.  Flash forward to 1979 when the original Battlestar Galactica became one of the most ambitious shows of that time with these amazing visual effects that rivaled Star Wars (Episode IV). I had split crushes on both Apollo and Starbuck, Apollo the hero figure, Starbuck the beginning of my attraction to bad boys. My foster father would often threaten me that I would not be allowed to watch it unless I did XYZ. That’s behavior modification at its finest–immediate compliance. However, he thought that was quite funny, so the list of XYZ things I had to accomplish in order to watch the show bordered on the absurd. The editor in me noticed that Comicpalooza misspelled “Galactica” as “Galatica” on his sign and he made me laugh as he tried to climb the chair to fix the mistake. No one was more thrilled when he signed on to the reimagined Battlestar Galactica as Tom Zarek, a character with so many dimensions. It was thrilling to see the evolution of his career from Philip Brent to Tom Zarek.

Hilda Bowen (a.k.a. PBMom) and Richard Hatch

Another iconic figure for me has been Claudia Christian, whose portrayal of Commander Susan Ivanova on Babylon 5 secured a place in annals of role models for women in science fiction. My sister turned me onto the show. Seasons 2-4 were my favorites. I sobbed during the Shiva scene; I felt my heart break when Marcus died (Oops! Spoiler alert.)  Chills went up my spine when she said, “Who am I? I am Susan Ivanova, Commander. Daughter of Andre and Sophie Ivanova. I am the right hand of vengeance and the boot that is going to kick your sorry ass all the way back to Earth, sweetheart! I am death incarnate, and the last living thing that you will ever see. God sent me.” I thought of this dialogue every time I battled the school district to get my son the services he needed. As we chatted, I learned new things about her, totally oblivious to the line that was forming behind me. She has a CD out “Once Upon A Time” which I bought. Her new book, Babylon Confidential is expected out November 6, 2012, a biography of her life which I am eager to read. Click on that link to preorder your copy now. There are free excerpts available and more will be emailed to you per the instructions on that page. I find it ironic that she discovered “The Sinclair Method” that helped her overcome her addictions (and maybe I’m watching Touch on Fox a bit too much looking for connections).

ClaudiaChristian

Claudia Christian of Babylon 5 with her new book coming out November 6, 2012 called “Babylon Confidential.” About a journey in her own life. Links are in the body of the report.

I backtracked to Rachel Luttrell who was looking lovely and was pregnant (which I did not even notice until the panel later in the day). Here was yet another woman who was able to be a powerful female lead without becoming too Ripley-like. We talked about her trip to Berlin and discussed why she is not on Twitter more!  Ivon Bartok’s Captain Starship was discussed.  It was such a pleasure to meet her, and obvious what I said above about Stargate applies to her as well and all the connections I have made. Conscious of the line forming behind me, I took her picture and then left.

Rachell Lutrell

Another picture of Rachel in the Raw

Last stop was to Michael Biehn and Jennifer Blanc-Biehn who are here to promote The Victim, a new psychological thriller coming this fall. Read more about it at the link and follow their links on Twitter.  

Finally we were off to meet my Twitter friend @etee and his family.  We are known to each other from having pithy Tweet-Ups about American Idol and other shows.  He is as funny face-to-face as he is on Twitter.  Although social media is the norm these days, face-to-face interaction is still required to make those connections complete.  His face will remain mysterious since he did not one taken of him (at least he thinks there wasn’t).  Snicker, snicker.  I would not do that to him.  I always get permission.  He will be blogging for Tubular TV soon.

Throughout the day, people passed by that had some wonderful outfits. Here are some of my favorites:

The best way to look “In cognito” would be to look like Johnny Deep in a costume. Maybe Johnny does that all the time. He is a dead ringer for him. Dead Ringer? Will that be the name of the Pirates 5 movie? Pirates of the Caribbean:  Dead Ringer.  I call Trademark.

Only in a Fringe Alt Star Wars universe where the world has gone mad and Elmo giggled too much.

The first panel was Babylon 5 with Claudia Christian and Julie Caitlin Brown (Na’Toth). Without any introductions from Comicpalooza staff, they jumped into things. When they discovered that the audience would have difficulty asking questions, Claudia handed her microphone over to the volunteer for people to come up and ask. (Note to Comicpalooza: Have microphone stands with a microphone in the middle of the row for people coming up to ask questions next year). Their panel was supremely entertaining. Having only been to two conventions in my lifetime, I had not heard the story of the psychofan who actually shot Claudia during one convention (and she didn’t press charges!). I have their panel on video and will put it up on YouTube soon, as soon as I chop it down into smaller segments. Caitlin Brown shared how she got the role of Na’Toth.

Claudia Christian and Julie Caitlin Brown of Babylon 5

My husband and I decided to head over to Hilton Americas to have lunch at The Cafe. At mid-meal we looked up and Claudia and Caitlin were coming to eat. I waved as they passed our table. After hearing that story, I was thinking in the back of my head–okay, not stalking–we were here first. We finished our meal and departed, stopping at the bathrooms on the way. I guess when I came out of the bathroom Claudia had already come in, but I was outside the men’s room waiting for Jeff. When she came out, still having the stalker story fresh in my head, and made sure to comment that husbands complain about their wives that take so long in the bathroom. The story about the psychofan was terrifying. I admire her bravery because if I had been in her shoes, I likely would never attend a convention again. People do not understand the concept of boundaries.

We saw some more great outfits. I took more pictures, but I think my camera had a malfunction.

Lizzie and Jennifer

James and Magi

Maicie Rawlings. Love her hair color, costume, ink and smile.

The Stargate panel with Rachel Luttrell and Christopher Judge was at 3 p.m. but a line had already formed long before to get in. While sitting in the 2nd row, I noticed a young lady with a uniform on in the front row and asked her if that was an authentic Stargate uniform. Nope. It was the real deal. Her name was Nathalie (last name withheld for her safety) and she was recently commissioned into the Air Force. I hope she felt like a rock star at that moment because I was deeply humbled by her. With Memorial Day weekend upon us, and although I know it is a day we are supposed to remember the service men and women who died to protect us and serve us, I think we should never forget those who are putting themselves in harm’s way now and in the future. The awe I felt and the gratitude–I don’t even remember the fumbling babble that came out of my mouth. I wanted to put my arms around her and give her a hug (because I’m a hugger), but I did not want to freak her out. Claudia’s psychofan story reminded me of boundaries. God Bless You, Nathalie (if you are reading this).

The real deal. Newly commissioned Air Force. Thank you Nathalie for serving. I will keep you in my heart and prayers, always.

The line had become long for questions. There is a great love for Stargate here in Houston.

Once again there was an issue with the microphone in the audience. This time the staff came up with a third microphone and people were able to line up to ask questions. My question was, “I’m a regular on Joe Mallozzi’s blog, and he talks a LOT about all of you. This is your chance. Do you have any secrets you want to out about HIM?” And boy did they let off some steam (just joking). If you follow his blog, and you should, then everything they said about him you already know. Rachel treated us to some of talented vocals.

Lighting here not good; Chris & Rachel’s panel

It was ice cream time. While standing in line, a man and his son walked up behind us and while it seemed 99% apparent to me that his son had autism, I mouthed the words to him so as not to embarrass his son if that were not the case. We started talking about autism and Patrick and our experience and his family’s experience. An hour flew by quickly. As if he left, I told him that some things in life were not coincidence and I think we were meant to meet. I gave him my email address and I hope I’ll hear from him. I really need to stop watching Touch on Fox (doubtful).

It was about 5:15 and time for us to head home after a long day. Comicpalooza is still here tomorrow, Sunday, May 27 including Lasertag with the stars for charity and sword training with Nick Gillard of Star Wars (extra fee).

Thanks for doing all this, Comicpalooza.  See you next year.  Written transcripts will be posted soon as well partial video of the panels.  I thank you for stopping by and enjoying the details.  Before next year, I WILL have size 6 or 6-1/2 combat boots to wear with my Stargate Universe uniform.

Cover Art of program: 

The back cover of the program book.

The creative page of the program booklet. I was impressed with this.





Local Gala Supporting Area Children with Autism A Success

28 04 2012

By Hilda Clark Bowen

With 2008 figures recently released by the Centers for Disease Control that autism is occurring now in 1 out of 88 children, and with April being Autism Awareness Month, the 6th Annual Boots and Bling Gala on Saturday, April 14, 2012, spread the message that “we are all in this together.” Hosted by The Woodlands Resort and Conference Center and generously sponsored by Altus and ZT Wealth, Including Kids, Inc., a 501(c) 3 organization, was able to raise approximately $160,000, all of which will go towards supporting Houston-area children with autism and other developmental disabilities realize their full potential through their full-time intensive one-on-one program, multiple inclusion programs, after-school tutoring, free community outreach and developmental programs, free parent training, sibling support groups and so much more.

There was something for every one of the 300 attendees. The classrooms created baskets for silent auction to compete for a paid lunch off campus. Fun games qualified winners for a variety of prizes. Busy bid boards hosted a large array of varied packages.

Busy bid boards

The live auction items included unique trips and dinners, but it was a video message from actor Mario Lopez (click here to see his video to our guests inviting gala attendees to be generous in their bidding to spend a fun day with him during taping of the show “Extra” that met with not only loud enthusiasm, but also a very high bid. State Representative Dan Huberty offered dinner at The Veranda for another high bidder. Pat and Ray’s Studio provided pictures of the children in their boots and bling.

Teacher Courtney Simon and student Patrick Bowen, courtesy of Pat and Ray's Studio

Including Kids could not be successful without the support of its generous sponsors and donors. Emcee for the evening was the wonderful Dean Ryan of Insperity. In attendance were ZT Wealth’s Kraig Killough and his wife, Mary, who brought along Houston Texans Chester Pitts and LaToya Hutchins. Also in attendance were Innovative Solutions, Clint Fowler, and his wife Jamie, Insperity’s Corrin Price and her husband Joe, Clint and Christle Johnson, Mark and Allison Elliott and Including Kids board members. All showed their altruistic support of Including Kids through sponsorships, auction purchases and donations. Enthusiastic volunteers from Best Buy extended a helping hand to ensure everyone had a good time.

(L to R) Clint & Kathy Fowler, Kraig Killough, Jennifer Dantzler, Sounia Sememar

The Woodlands residents: Jean Paul & Wendy Buisine, and Michelle & Gordon Dobson (also Board members of Including Kids)

As Jennifer Dantzler, BCBA, M.S.Ed., Executive Director of Including Kids, addressed the crowd, things turned quite emotional. She thanked not only the people who support the school, but also the parents who entrust their children to her and her staff. A slide-show of accomplishments of the children followed. Guest speaker, Dr. Heather Harnett, shared their family’s journey into the world of autism. Because of Including Kids, her daughter has graduated and is now attending regular kindergarten where she is about to perform a solo singing part in a play. By the end of her speech, there was not a dry eye left in the audience.

Dr. Heather Harnett, keynote speaker

“For every child, time is of the essence,” according to Jennifer Dantzler. “We know the earlier the intervention, the more favorable the outcome. However, we have also seen amazing strides from children as old as 14 years of age who had no previous intensive intervention. We encourage you to check out our website at http://www.includingkids.org to learn more about our programs.”

About Including Kids, Inc.

The mission of Including Kids, Inc. is to provide educational and therapeutic instruction using the principles of Applied Behavior Analysis for children with autism and other related disorders endeavoring to facilitate their inclusion in the community and inspire them to become productive citizens.

Additional Photos

The Woodlands businessman, Mike Norat, and his wife, Glicel

The Woodlands residents Jeffrey & Hilda Bowen

Best Buy volunteers helped make the night fun.





My “Touch” Moment

21 03 2012

By Hilda Clark Bowen

Coincidence. Fate. Is there truly a God that controls all things down to the microsecond of your life or just the big stuff? After all, if God exists, he/she gave us the free will to make choices. Those choices ripple out into consequences, good or bad. These are the questions we all ask ourselves and our answers may vary throughout our life as our own experiences shape our reality.

I had always felt it was fate that led me to find Jeff. It is difficult to put a starting point in this story. My father-in-law passed away in February 2012. For those of you who haven’t seen the new Fox series “Touch”, the experience made me instantly think of this show. It is loosely based on the red string of fate, a Chinese legend that said the gods tie an invisible red string around the ankles of those that are destined to be soul mates and will one day marry each other. The two people connected by the red thread are destined lovers, regardless of time, place, or circumstances. This magical cord may stretch or tangle, but never break, a concept very similar to soul mates. Tim Kring of the new TV show “Touch” expands that to include groups of individuals but still connected by love.

Red string of fate; unknown credit

I met Jeff on July 4, 1990, the last day of my vacation that began with my dear friend, Louise Rizzuto, getting married, on Long Island. I was a bridesmaid in her wedding. After the wedding, I traveled down to New Jersey to see my sister and my aunt. On that last night back on Long Island, my friend and now Patrick’s godmother, Patty, asked me to go out with her that evening. She wanted me to meet the best friend of her boyfriend, Larry. I almost did not get there. My foster brother stole my keys and would not give them back to me, and making me very late. Jeff told me he was about to leave. We met around the corner from where he lived in Setauket. We stayed at the restaurant for a few hours and then I told Jeff I would still love to sit by the water, as I had not had an opportunity to do that. He took me to a beach that apparently was frequented by drug dealers. When the police raided the beach, I was terrified I was going to jail for just sitting on the beach talking with him, so I ran. Jeff grabbed my purse and ran with me. After the police car stopped us and determined I truly was just some out-of-towner who did not realize the beach was closed, he let us go. Jeff found another place where we could talk out in public. I think I left about 4-5 a.m. and went back to where I was staying to pack and drive to the airport.

The rest of our relationship unfolded. He eventually moved down here in January of 1991 into his own apartment. We were engaged in July of 1991, but he wanted me to meet his family before making the announcement.  We did that on August 11, 1991 the day after his cousin’s wedding. We were married in October 1992.

My friend Patty said that we were the best thing that came out of her relationship with Jeff’s best friend. Patty and Larry broke up shortly after that.

As we continued to find out about each other, I discovered that Jeff went to our rival high school, Ward Melville, and had often been to our school for sports. I was often at the school because in my sophomore year, I was president of my class. He lived right around the corner from SUNY Stony Brook, the college my sister attended, and where I often visited. That is important because around the corner from there was the Pancake Cottage, where my sister and I would have breakfast, as would Jeff and his family. It is possible that we were in the restaurant at the same time together and never knew it. Then we traced ourselves back even further. He remembers a classmate of his coming back from the Suffolk County LIBEC contest for typing in 1981, saying she was beat from someone from Patchogue (as if that was pond scum; we were a lower socioeconomic group than Ward Melville). Yep, that person was me.

Meanwhile in Setauket, Long Island, before we met, Jeff’s sister Deirdre was off at college in Massachusetts. She became roommates with Trish. Deirdre eventually married Frank. Trish married John.

Trish and John belonged to a very small church in New Jersey. They were very close to Jennifer. Jennifer and John were working on bringing a more contemporary service to their church. He knew Marilyn and Tony, Jennifer’s parents. He also knew Michelle and Gordon Dobson. One day Jennifer tells them she is moving to Texas to start a business to help this family out. Marilyn and Tony followed. They were very sad to see her go.

I had a miscarriage with my first baby (a boy, we named Matthew Joseph). Then Patrick was born, and he was later diagnosed with multiple disabilities including autism. In August 2010, I decided to pull him out of public school and try to get him into an autism school in the area. The place we found was Including Kids (InKids) run by Jennifer Dantzler.

On February 5, 2012, my father-in-law died. The wake would be Thursday of that next week and the funeral on Friday. We debated back and forth about who would go up there–just Jeff or would we try to attempt this trip as a family. Patrick’s behavior was much better since being at InKids, and we knew Jeff’s mom would love to see Patrick; she had not seen him in almost a decade (she could not fly down because of my father-in-law’s condition and we dared not even try before this time). The whole family would be happy to see him.

I was with Patrick in a lounge area at the funeral home when Jeff pops his head in and says, “You have to come over here; someone here knows Jennifer Dantzler.” I looked at him what a “what the hell” look. As we are walking, he tells me, “Deirdre’s roommate from college.” Then I thought the connection was that Jennifer also went to college in Massachusetts (not the same place, but maybe they knew each other from that area). While they were talking, Jeff stated that Patrick had autism and that he was going to a school for autism. Trish asked, “Do you know Jennifer Dantzler?” Jeff said, “She runs the school.” There are many schools for autism here in throughout Houston and the surrounding areas. As we talked to these people, my mind was connecting all the dots. Jennifer Dantzler is the executive director of Including Kids (InKids), the place where Patrick goes to school.

We talked about this huge coincidence for almost 30 minutes or more. John told me he remembered clearly when Jennifer said she was moving down to Texas. They were all shocked. I said, “The woman is fearless.” He agreed that was a good word for her. He said they had lost touch with each other in the last 4 years. At that very moment, I wanted to place a call to InKids, but it was late at night and no one would be there. We also discovered that while they were at this church, the Dobson’s offered up a French meal for 10-12 as a church raffle. Michelle is a French chef. It is something they offer similarly here for our Boots and Bling Gala, which is coming up on April 14, 2012. Trish said, “We invited Deirdre and Frank to that.” The Dobson’s are now on the board of directors for the school and also live down here. Tony and Marilyn routinely are the ones to serve the food to people at these type events, so Deirdre and Frank likely saw them at that dinner without ever knowing they were to become part of our lives, too, at a future date. John said Jennifer, Marilyn and Tony had been on his mind for the last 2 weeks. We shared with Trish and John that if it were not for Jennifer and her staff, Patrick would not be here making that long journey from Texas to New Jersey. We shared with them all the progress Patrick has been able to make since going to InKids. The next day at Deirdre’s house, I told Deirdre about the connections. They also took her by surprise.

Upon returning home, I was eager to run in and tell Jennifer, but I was too late. They had already contacted them. Marilyn said the email started, “I don’t believe in coincidences…” The email made her cry. Marilyn shared with me that 2 weeks ago, Trish and John were on her mind, too. Apparently, Marilyn/Jennifer and Trish/John had lost contact with each other for at least the past 4 years. Trish and John went on to make a monetary donation to Including Kids in honor of Patrick and in memory of Patrick’s grandfather.  Best of all, they were back in contact with each other.

The mathematical probability of this happening is unlikely, but there it was–my “Touch” moment. There was a string that connected all our lives and it took this particularly sad event of my father-in-law’s passing for all the pieces to be revealed.

Have you ever had moments such as these? Please feel free to share in the comment section.

UPDATE FEB 2013

Trish and John subsequently made donations to my son’s school for autism, Including Kids. In January, their son came down to see if a particular career path was right for him or not. Where was he? At Patrick’s school. He had been down for 3 weeks and one day I went in to volunteer and we met. This was almost a full year after my father-in-law passed away. If he does decide to move here, we may also have some part-time work he can do directly with Patrick at home. The connections continue.





Touch — Review and Synopsis

26 01 2012

Touch

It has been a long time since I have been profoundly moved by a television show that has left me feeling hopeful regarding the interconnectedness of humanity. For anyone who believes things happen for a reason, this will be your new favorite show. Having previewed their new baby on Wednesday, January 25, 2012, Fox will enjoy seeing news about this series spread in the coming months. When it debuts on March 19, 2012, it will be seen around the globe in more than 100 countries within 3 days’ period of time and try to achieve a level of connectedness by the fan-base as never before. Arguably it has been something people have been complaining about for quite some time about the US or Canada having exclusive access to a show, and other countries having to wait to see it, sometimes many weeks, sometimes many months, sometimes never, which leads to seeking access on torrent sites which ultimately results in the demise of a show because no one is live-viewing it anymore.

The story centers around Martin Bohm (Kiefer Sutherland) and his son, Jake Bohm (David Mazouz). Labeled “severely autistic”, Martin never believed in the diagnosis given to his child and seems to be just trying to do whatever he could to make a connection with his son, yet fully accepting and loving his child at whatever place he was (very Son-Rise-esque).

I am a mother with a child with severe autism. In the weeks leading up to the show, I seemed to be getting a lot of negative feedback about that–not ANOTHER show about another kid with autism–as if autism is the célèbre-du-jour of Hollywood. Indeed kids or adults with autism were turning up everywhere on every show either as part of the main cast or as a guest star. There are a few shows that got it right, but most did not. Most people with autism are not savants (only about 10%). While parents with autism appreciate the desire to bring awareness to the spectrum disorder, when it is depicted incorrectly, it hurts our cause. The general population has grown tired of hearing “My child has autism.” They scoff at you like you are just part of the misguided parents who need to have a diagnosis for their child. Or, you have the medical community trying to reclassify the spectrum of autism to water it down so it does not appear to be an epidemic (a blog for a later time). Even I started viewing this show with a bias.

From this point forward, there will be spoilers:

The show opens with a narrative from Jake about numbers very similar to the a belief borne from the red string of fate, a Chinese legend that said the gods tie an invisible red string around the ankles of those that are destined to be soul mates and will one day marry each other. The two people connected by the red thread are destined lovers, regardless of time, place, or circumstances. This magical cord may stretch or tangle, but never break, a concept very similar to soul mates. But Tim Kring, the creator of Touch, twists this idea even further to tie a group of individuals together.

Fans of Jericho (or Three Rivers or Hawaii-Five-O) will be thrilled to see that Carol Barbee is executive producer on this pilot. Executive producer Peter Chernin now has another hit on his hands after enjoying great success with Terra Nova and New Girl, also on Fox. Also sharing executive producer co-credits are Katherine Pope (also of Terra Nova and New Girl), Kiefer Sutherland, and producers, Neal Ahern, Jr., (Terra Nova, Parenthood), and Dennis Hammer (Heroes, Crossing Jordan).

The show opens with Martin at his job at the JFK airport in New York where he is gathering a bunch of cell phones, that were left in the lost and found and unclaimed, for his son who is fascinated by them. One of them rings as he is walking away. Apparently it is the owner of one of the phones trying to get the phone back after losing it at Heathrow Airport in London 2 days previously. He is not looking to get back the phone itself, but rather photographs within the phone. Apparently it is her birthday “tomorrow” but he is now in Mumbai. And he seems to be in great emotional distress. Martin’s phone is ringing so he places the man’s phone down in a bin. His son is in trouble. “I pay your school good money to keep my son safe. Are you grasping me?” Oh yes, I was relating to this character very much.

He’s off to talk his son down off an electricity tower, and I mean that literally. Meanwhile, the cell phone gets mixed up on top of some luggage. Jack Bauer is scared of heights? What? Oh wait, wrong show. It is hard NOT to put Kiefer automatically into the role of Jack. The workers want to know if the numbers 318 have any special meaning to Jake but Martin shrugs it off. A report to child services is going to need to be made.

On the way home, they stop at a gas station. Martin gazes at his son in the rear-view mirror while gazing over at the school bus filled with children talking and acting like normally developed children. My heart sinks. I know EXACTLY what this character is feeling. How many times have I done this with Patrick, just for a brief second wondering what life would be like? Martin and I share a common bond in addition to the fact that they are our only living child so we know really no other kind of life. He looks into the rear-view mirror and his son is gone, having taken off to go over towards the bus. Another similarity to autism–so I’m still very hesitant. How many of us turn away for a second and our kids with autism take off? Martin talks to his son like one would talk to their loved one in a coma, hoping that something they say will jar their loved one to respond in some way, desperately longing for that contact. I have been in this place, too, where Patrick was seemingly catatonic (but very noisy, unlike Martin’s Jake). Martin notices the number on the bus: District No 318. In the store, the TV is showing a story on “The Children of 9/11” and the struggles they endure. A man is trying to buy a Lotto ticket. Jake looks up as the man calls out the numbers: 87 1 9 20 31 11. Jake grabs the Lotto ticket and runs to the car, locking the doors. He writes down these numbers on pages of numbers he already wrote previously and hands the ticket back. The man says, “You ought to keep that kid in a cage.” Oh yes, that is something we’ve had to endure hearing before.  But this is actor Titus Welliver from “Lost” so I expect dark mystery to surround him.

Then we see a beautiful young singer, Kayla Graham (Karen David) on stage, surrounded by her fans, recording her performance on a cell phone that looks very similar to the one found at JFK. She does not believe she’ll ever be a big star. Her co-worker, Niles Borne, (Simon Delaney), tries to encourage her, saying half the company was there to support her tonight. He tells her that we all have a destiny, and hers is to be a big star. The cell phone, he believes, is the key. He found that the cell phone had traveled all around the world and now her recording was on it. The phone apparently right now is in Dublin, Ireland. He sticks the cell phone into the luggage of someone headed to Japan and away the cell phone goes.

An alarm set for 3:18 goes off at Martin’s computer. He goes in to put Jake to bed. Jake has apparently lined up cell phones. He mentions that the doctor said he was going to grow up bigger than him and how was that going to work? I’m already living that. I’m 5’3″ and my 16-year-old son is now 6 feet tall, and has seizures. The cell phones go off. Jake has all of them programmed to show the numbers 87, 1, 9, 20, 31, 11.

A family in the Middle East, Baghdad, is the next bunch introduced. The son is trying to imitate Chris Rock and wants to be a comedian. They need an oven to keep their bakery. It will cost 800,000 dinar (about $687 US dollars). The only way to make that kind of money is with shady characters who make people blow themselves up. His friend suggests they check out Hassam’s place.

Clea Hopkins (Gugu Mbatha-Raw) from family services shows up at Martin’s door the next morning. One reality disconnect: They do not show up that quickly. I already dislike this woman, so she did a great job as an actress. She lists his inadequacies as a parent, supposing that the state could do a better job. Another reality disconnect: The writers did not Google: State facilities, Texas, fight clubs, Department of Justice report, Corpus Christi. “The financial challenges will only increase as your son gets older.” I can relate to that statement, but do you know what the first thing is to get cut when state budgets are on the line? Yep, people with disabilities. Good thing Martin lives in New York versus, let’s say, Texas.

Martin shares that his wife died in the 9/11 tragedy (making Jake a child of 9/11–see above).  While Clea is trying to “talk” with the silent Jake, Martin sees the numbers in the newspaper: The numbers belong to the new Lotto winner. The man (Randall) who bought the ticket realizes he is a winner and places a phone call to a woman. He says he wants to come home now.

Simon (the owner of the cell phone now off to Japan) is on a plane and calls a woman. He is on his way to Tokyo. He wants to be there for “her” birthday (the child) but the woman is short on conversation. She also appears to be in emotional pain. My first thought was a divorce. He asks her if they took any photographs of Lily while they were on vacation besides for the ones on his phone; a tear streams down her face as she says no.

Clea tries to explain the strange coincidence off as it being part of Jake’s autism, which Martin insists is NOT his diagnosis. Martin said that for all he knows Jake does not speak because he has nothing to say. Martin says he is trying to communicate; Clea belittles his thought to wish fulfillment. Her character then starts softening up, trying to say no one is judging him (but they are).

A young Japanese woman goes through the bag of the man who came from Ireland, the one with the cell phone in his bag. She and her friend, Izumi, are in a fan club of a group called “The Morticians” who are from Ireland (actually a band based out of Waco, Texas). The man lives in Tokyo but wants to have some fun with the young girl before going home. She grabs the cell phone in his bag and leaves.

Back in New York, Martin is leaving Jake at the boarding facility. Obviously no research has been done here either. These state facilities do NOT look like this gorgeous facility. My heart wrenches for Martin not only for having to leave his son in one of these places, but also that he cannot even hug him to say goodbye. Personally, I’d skip the country and run. No one is ever taking my kid from me. Martin then goes to visit the grave of his wife, Sarah. He says, “They say God never gives you more than you can handle. But I think he has this time.” Oh dear, the tears start streaming from my eyes. How many times have I felt and said the exact same words, or felt extreme anger at people who have said that to me, not having the slightest clue what our lives are like. He looks down to find a FDNY badge with the numbers 318 on them.

The Japanese girls see Kayla Graham’s video and decide to start up a fan club as they believe she is probably already a big star in Ireland. They are going to enlist the talents of their friend, Takezo, who runs the Jumbotron at Shibuya. They will get him to download “everything” on that phone and put it up on the Jumbotron (you can see where this is going). They’ll pass the phone to another client at 4:00 p.m. , who is catching a plane to Kuwait in 3 hours.

A search for mutism and cell phones leads Martin to the door of The Teller Institute that lists the following: Mysticism, Mythology and New Age interpretation; a rise in diagnosing behavioral disorders; for a select few, mutism is a false diagnosis; this is a beginning in a shift of consciousness. (Okay, now I’m thinking Mayan 2012 theories here). We are witnessing an evolutionary step (I’m thinking Alphas here). We must listen to their message. How string theory and quantum entanglement…. (I’m thinking Fringe). The geek that I am (and conditioned Lost fan) looked up the link to http://www.tellerinstitute/electromagnetism.html but it does not exist. He gets an address to this institute: 318 West Tesla Street, Bronx, NY. SWEET. It would have been really great if the address actually existed. A bath-robed Professor Arthur Dewitt (Danny Glover) answers the door. He talks about electromagnetism and that some kids (mostly) are just tuned into the right frequency. Interestingly, he gets Martin an orange soda, the same kind Jake drinks. Apparently Jake has discovered the Fibonacci mathematical sequence on his own. He shows him pictures of the curve, similar to how Jake lined up the cell phones. “The universe is made up of precise ratios and patterns. You and I–we don’t see them. But if we could, life would be magical beyond our wildest dreams, a quantum entanglement of cause and effect where everything and everyone reflects on each other. Every action, every breath, every conscious thought connected. Imagine the unspeakable beauty of the universe he sees. No wonder he doesn’t talk. ” Martin, excited, responds, “My son sees all that?” The professor continues, “Your son sees everything–the past, the present, the future. He sees how it’s all connected.” Martin responds, “You’re telling me my son can predict the future?” The professor adds, “I’m telling you, it’s a roadmap. And your job now, your purpose, is to follow it for him. It’s your fate, Mr. Bohm. It’s your destiny.” I now have complete chills. I see the parallels of my own life being reflected in this story. My Patrick has accomplished a great deal in his 16 years on this earth; my purpose is for him to fulfill his destiny. I have often felt like his conduit.

Back at the school, Clea becomes a believer when Jake uses popcorn to make the numbers 2, 1, 2, 9, 2, 0, 6, 9, 2, 2, the numbers which was her mother’s phone number. And then her cell phone rings with that number. He goes over to circle 18 on the March calendar.

The Lotto winner is headed to Lynchburg, Virginia.

Martin looks at Jake’s numbers again and gets a phone number. Using modern technology, he puts it into the reverse phone numbers feature of a web site and it comes up as Grand Central Station at 87 East 42nd Street. Eighty-seven is the first number of the Lotto sequence. Clea knocks on his door; 3/18 is “today.” Martin is not sure if he is supposed to stop something from happening or make something happen, not only to happen on 3/18 but AT 3:18. Twenty-two minutes to Grand Central Station? Yeah, right. He better live close-by. When he locates the phone, there is a man talking on it. When he turns him around, he realizes it is the man from the store, the one who punched him. Now Martin punches back. The police break up the fight. It’s now 3:19 and Martin thinks he has failed.

Back in Iraq, a group of men walk in on the young boy at Hassam’s and they hide. They have a bunch of cell phones, including the one with Kayla Graham’s recording on it. A little girl sees them, but does not appear to give them away, but one of the terrorists comes back in. They catch him. He tells them about the oven and you can see the evil in their eyes. You know they are going to make him do something bad.

Back at Martin’s the 3:18 alarm goes off again on his computer; he notices there is a message on his answering machine. Randall Meade is calling him. Randall Meade who won Lotto; Randall Meade who was on the phone at Grand Central Station leaving Martin a message on his answering machine. He was a fire fighter on duty who tried to save his wife that tragic day. He was part of Ladder Company 318 on 9/11. He went to the 87th floor of the North Tower. His wife was alive, barely conscious and bleeding pretty badly. He carried her down 31 flights of stairs, but could not carry her any further. He convinced himself that she was dead, but the truth was he was not sure if she really was. He had been thinking about her for 10 years and had been playing the same lotto numbers every week for 10 years. 9, 11, 2001, 87th floor, 31 flights of stairs. He had wanted to try to make the numbers come out right. He was going to give all the money away. Then Martin hears himself on the phone answering machine, the encounter that happened at Grand Central Station. Then he hears Randall Meade’s name on the TV. Apparently the bus from the gas station had overturned in a bad rain storm. He pulled the kids from a burning bus. He said to the reporter if he had not missed his train, he would not have been there. Martin heads out to see his son, but his son escaped the state facility. Martin still does not know the further repercussions of this red thread.

Flash over to the Jumbotron where Simon, who is now in Tokyo, tries to call his phone: 44, 077, 0090, 0488. He gets Kayla Graham who is back at her day job. He wants her to find out where his phone is, but it is in “an invalid territory.” Kayla appears on the Jumbotron. He pleads with Kayla to please help him. Lily’s picture is in there, his daughter who died a year ago. Simon looks up at the Jumbotron and sees Lily’s pictures. It brings some peace to a grieving father. In Iraq, Simon’s phone rings. It is hooked up to a bomb that is now attached to our character’s chest. He pleads with Kayla to tell the world he was not a bad person; she tries to help him not explode. With all these wonderful connections, my heart was hoping this young man wouldn’t be blown up, that he would get his happy ending, too. Kayla tells him there is always a choice. They bond over Chris Rock. She asks him what would make him not do this. He tells her, “An oven.” She knows a guy (Simon) in restaurant supplies.

Martin and Clea find Jake at the tower. Jake narrates again: “The ratio is always the same: 1 to 1.618 over and over.”  Kayla’s co-worker sees her video on YouTube with 1,621,318 views. Simon makes it home to his wife. Martin overcomes his fear of heights and climbs the tower to talk to Jake. Jake says, “Will these words be used to hurt or to heal?” Randall gets on a bus to Virginia. Martin tells Jake that he followed the numbers and people were saved. “I don’t know if you can even hear me, but I can hear you, Jake?” I’m sobbing at this point. How many times have I said this to my nonverbal son? Jake crawls over to him and for the first time in Martin’s life, gave Martin a hug. I have raccoon eyes by now; my mascara is flowing everywhere. I remember the first time my child gave me what I call a half-hug. My dear friend who I shared my glee with said to me that she appreciated me sharing these things with her because it made her appreciate her neurotypical child even more. She never realized the things she took for granted, the comment that made me realize that Patrick’s purpose was for people to appreciate the people in their own lives and not take even simple things as eye contact for granted.

Jake grabbed Martin’s cell phone and pointed him on his next mission: 718-673-5296

Where I end my belief is this: How does Martin’s phone still work in that monster rainstorm?

My message to Tim Kring: Season 1 of Heroes was awesome. Touch has the possibility of great things that may start people thinking more about the ripple effect of their own actions, and acting more kind to each other. Don’t screw it up, okay? Save Touch, Save the world.





Immortality and Legacy

14 01 2012

Immortality on this earth would be something I would gladly choose if I could stay the way I looked at 25 years old forever with the wisdom of who I am now. It would be sad to see family and loved ones die, but despite my incredibly dysfunctional first half of my life, it’s been a blast. There was so much more I want to do. So many careers that take many years to learn. So many arts to master. So many places to visit. So many people to meet.

Me around age 27

Hilda at age 25

Knowing this was unrealistic in at least my lifetime, I had the next best plan. I was on my way in my youth to becoming the first Air Force woman combat fighter jet pilot, who was also a medical doctor, who then applied to the space program and became the first woman astronaut who flew the Mars mission or lived on the moon base. Then I would work in third-world countries where I would spend the rest of my years eradicating the diseases of the world, of body, mind and spirit, where in my spare time I would learn about people’s religions and cultures as I moved from village to village all over the world. I had no desire to get married. The children of the world I would informally adopt. I had a strategic plan to achieve all that. I wanted to find a way to eliminate poverty, to free the world of prejudice and hate. I wanted to be a blazing comet that set the world on fire, a world that would remember me for leaving it a better place before I departed. But as a teenager with a strict plan, you don’t plan on curveballs.

Hilda at age 25

In 2011, I had an unusual number of friends pass away. In October, after one of them passed away, I became more acutely aware of the need to be more proactive in some of my friendships I had neglected. Although we were in contact by email, phone and Facebook, my friend, Diane, had become unable to drive. Since 2009, I have wanted to drive over to Channelview to meet her for lunch, but my health was not good and I found myself too busy fighting with school districts to take what seemed like a very long drive (I thought it was closer to Beaumont for some reason) to see her. I knew the holidays were coming. I barely had time to schedule a kidney biopsy in the month of December before the year ran out. I promised her that after the holiday madness was over, we would pull out the calendar and figure out which weekend she was on call and which weekend I was on call and get make a date for the one of the other two weekends (we both worked for the same company, her since 1993, but I had known her since at least 1989 or 1990).

She celebrated her birthday on Thursday, January 5. Although I knew that she loved Hoops & Yo-yo from Hallmark, I wanted to surprise her with something else and got her a Darth Vader card. Then it occurred to me that I did not know if she had even WATCHED the Star Wars movies. Having confirmed she saw the first one that was all she needed to know to understand the card. Thursday night I became unwell. Saturday an email awaited me. I was in bed until Monday afternoon. At 3:20 p.m., I scanned through my emails upon which time I saw the email that let me know my friend, Diane had died on Saturday.

Diane was a star in the sky. She lived in this area all of her life. She had a huge family. She was many things to many people–mentor, educator, teacher, sister, daughter, aunt, great aunt, and friend. She talked about her nieces and nephews and then great nieces and nephews with such love and pride. There were so many of them, it was so hard to keep them straight. I knew Diane before I got married to my husband. She was there when I got married, when I got pregnant and miscarried, when I got pregnant and had Patrick, when Patrick was diagnosed with autism, my journey with that. She was my ear, a person I vented to, my cheerleader, Patrick’s cheerleader. Once she got on Facebook, I talked to her more than my own sisters. In the past 2 years with Patrick at his new private school and the huge progress he was making, she “liked” every comment, and on some left “woo-hoo’s” and some beautiful notes that would make my heart either swell with pride or my eyes swell with tears of joy.

Brandy & Diane

She had a fierce sense of humor. As diabetes kept claiming more parts of her slowly, there came a point where a toe had to be amputated. She made jokes about it. She said, “Asked the podiatrist to trim my toenails but also asked him if he’d give me a discount since I now have only 9 toes. Actually he didn’t charge me anything as I’m still considered seeing him for surgical followup. Anyway, thanks for thinking of me and for the beautiful plant and for just being you.”

She knew, too, that my birthday is on St. Patrick’s Day. However, on February 17th, 2010 I received a birthday card (I think it was an e-card). I emailed her at 1:12 p.m. and said, “Thanks for the birthday card. The words I need to remember because in 20 minutes I’ll be at Patrick’s school. Just one teeny, tiny thing. It’s not until March 17. St. Patrick’s Day. But I will take it as a divine-inspired intervention that I need to be polite to these people today, don’t necessarily have to cave-in, but they aren’t to blame for the director being a bully. They are going to unfortunately be her victim as well if no one can get control of his individual. Think good thoughts. My stomach is in knots. I feel like I want to puke. I imagine I’ll be shaking uncontrollably by the time I come home.” At 1:34 p.m., an email arrived that said, “After I sent it, I realized it wasn’t St. Patrick’s Day yet! Maybe I just needed to tell you I was thinking of you?? Love, Diane.” We had many letters of correspondence like this.

For 45 minutes on Wednesday, people got up and shared perhaps 1 story they had about Diane. Or just stories in general. I didn’t realize we were going to do this so I was ill-prepared. For most people, they had people laughing. After 4 days of rain and flooding, Wednesday was 70 degrees and beautiful; the next day would usher in below freezing temperatures. If you were going to have to say goodbye to a treasured loved one, Wednesday was the best day to do it.

Diane’s niece Brandy did not recognize me until I said Patrick on Diane’s Facebook page, and then knew immediately who I was. Of course! That is why I am PBMom. I’m Patrick Bowen’s mom. (People always think it is Peanut Butter Mom).  But we immediately recognized each other when I entered the funeral home.

The entire drive home, I thought about my own inevitable death, what people might take the time to actually come to a service, what would be said about me. After Jeff returned home, I sobbed in his arms, saying that I felt like I had failed in this life because I did not become what I had set out to be. Some things I let go of by choice; some things because there was no choice.

A fan rendering of a concert performance.

He did not understand what I was saying. He said he spent his whole life caring too much about what other people thought of him that he could care less what people thought of him when he died. And I sat there not understanding how you could NOT care. Isn’t that what our purpose here is? Aren’t we supposed to make the world better while we are here (and I’m not talking about political differences, but the benefit of humanity in the interest of humanity, like elimination of hunger, poverty, homelessness, illness, etc., not the ideologies of how to achieve that)? Aren’t we supposed to want to be the next Bill Gates or Steve Jobs or Louis Pasteur or Marie Curie? With our blood line ending with Patrick, and unless autism is cured, he is unlikely to become a father since he is unable to take care of himself, we have no one to remember the stories of us to pass down to future generations so we have to find other ways.

Hamman Hall, Rice University, 1986-1987? during my "steroid" days that gave me Cushing's disease.

I know what Patrick’s purpose in this life is. He has changed the hearts of so many. He has inspired at least 2 young people to want to be teachers. He was the reason why I started the first special needs ministry ever in The Woodlands in 1998-2005 at St. Anthony of Padua and because of that ministry and the people who came forward to help, so many people who needed help were helped. I often felt like I was being Patrick’s conduit but also a conduit of hooking up those people who needed help with those people who could help.

The next day, Brandy posted on my Facebook page that she was going through Diane’s things and found a picture of Patrick and a picture of Jeff and me. I misread the note thinking it was a picture of all three of us in the same picture, something that rarely occurs. She responded: “It was a picture of your son when he was younger. It looked like he was playing in the yard and then there was a separate picture of you and your husband that she had beside the picture of Patrick. I knew immediately who it was but, to make sure I flipped it over because she always wrote who was in the picture on the back and the age of the kids or the year that it was taken. She had it in her family album. It was in amongst pictures of her great nieces and nephews. 🙂 “I honestly felt Patrick had been invited to Jesus’ table for dinner because I knew how she felt about her nieces and nephews. I responded: “I knew Patrick was special to her, but I never knew that. And knowing the immense love and pride she had for all of you, that she loved him so much to place him among you all. Wow. I miss her SO much. Thank you for telling me that. My love and thoughts are with you all today. It must be so difficult going through her things.”

And I burst into tears.

Is being Patrick’s conduit, being known as PBMom, such a bad thing? No, it’s not. But I would rather be the one who figures out the puzzle that is autism and/or cures it so not one more family has to go through this. Or perhaps stumbles upon the fountain of youth where I can become immortal and go back and do all the things I originally planned on doing.

Patrick-- The PB in the PBMom

What do you hope people will say about you when you pass beyond your earthly bonds?