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Stop Supporting Autism Speaks

3 04 2017

Reposting this blog. It still holds true. Autism Speaks only speaks for themselves.

Pbmom's Blog

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…

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A Tribute to Special People in My Life

24 01 2017

Today is the anniversary of the death of someone I cared about deeply. I had intended to write this last year, but then my life went into crazy mode. As time moved on, it seemed weird to write a post that wasn’t connected to a significant date. In December, his wife passed away, joining her husband in heaven. I wanted to write the post then, but it was the holidays and life was in crazy mode. Today was the day. I wanted to honor Wayne and Garnith and what they and their family have meant to me. In doing this, however, I am going to have to share some deeply personal things.

Some know the story and some do not. I was born in Brooklyn, but after 5 years, my family moved to Hillside, New Jersey. My parents divorced a few years later. My mother got pregnant and then married a second man. When she discovered he was a polygamist, she had him arrested and but was only able to convince one of the wives to come testify. He was found guilty of bigamy. As he was being carted off to prison from the courtroom he said that he was going to kill us. I don’t know why my mother decided that Omaha was the safest place to hide; it would be the first place he would have looked because her sister and her family lived there. But we pulled up stakes and moved to Omaha.

Sometime in my 5th grade year (the entry grade level in Omaha), I met someone new to our class. Her name was Kelly. She lived in the townhome complex we did. She was very quiet and shy (boy was that just a cover!) She had an older sister (one grade level up) named Kitchel.

Fifth grade class; Kelly is standing in the first row, 2nd from the left in the dark shirt.

Fifth grade class; Kelly is standing in the first row, 2nd from the left in the dark shirt.

Once friends, I got to meet Kelly’s parents, Wayne and Garnith. I remember my first impressions were they were so YOUNG and hip and cool. Garnith had gotten pregnant with Kitchel when she was 16. Wayne and Garnith got married then. Can you imagine getting married at 16 years of age? One would say the marriage was doomed…but it wasn’t. They listened to the music I like; I hated the music my mother liked.

Garnith

Garnith

I found myself staying over there more and more. Sometimes I would hang out with Kelly more, but then if Kitchel was doing something I was interested in, I might hang out with her more. There wasn’t much age difference between the two and it wasn’t ever because I was upset with one.

Their home became a refuge to escape the abuse going on in my home. They weren’t perfect. They lost their temper on occasion. Sometimes Kitchel or Kelly got grounded. They became a role model for me of people who loved their children, witnessing it up close and personal how that dynamic worked.

I was introduced to new things there. Butter — glorious butter — and that it didn’t need refrigeration (we were eating margarine at home). Refried beans. I didn’t even know what that was until I met them. I loved being able to stay over and eat dinner with them because the food was so much better. Likely I invited myself on many occasions. Garnith was the one who pierced my ears. She worked in a medical clinic. She numbed my ear lobe with ice cubes and then inserted an IV needle in my ear lobes. She was there to brush my tears away when my mother lost control at home. She listened to things that came my heart. She gave me advice when I asked for it. She became like a mother to me. More and more I wanted to stay at their house and not mine.

My father was pretty absent in my life. He was an alcoholic and child abuser. Once we moved to Omaha he couldn’t even sit down and write a letter to me. Wayne became my fatherly role model. He was a quiet one (his wife the complete opposite). He was funny. He loved football. He gave me advice as well. He became like a father to me.

Wayne

Wayne

One year they asked me if I wanted to come with them on a family road trip to Wichita. I was shocked my mother said yes. I got to experience what that was like. I met their extended family. I wanted to be adopted by them. I had hoped maybe with my absence it would make my mother’s heart grow fonder, but that never happened.

Dancing in Blue Springs, MO

Dancing in Blue Springs, MO

When they moved from the townhomes into a house (but still in the same school district) it became a bit more difficult to see them.

Meanwhile at home a storm was brewing. My sister and my mother got into a fight. She told my sister to leave. I stuck up for my sister. My mother was lying saying my sister said one thing when I had been a witness and that was not what she said. My mother told me I could go with her. At age 14, I boarded, along with my sister, a bus bound for New York (a very scary trip). My sister moved in with her friend’s family Toms River (having known them from Hillside). I went to my aunt’s house (and that is another story). My mother apologized and told me for the first time in at least a decade that she loved me. I decided to go home and give it another try.

Kelly & Kitchel in Houston

Kelly & Kitchel

Things just got worse. By July, she told me she was buying me a one-way ticket to my father (a father who was living under a bridge). She never wanted to see me again and I would never see my brother again. She told me I could only take the things with me that I had bought for myself with babysitting money. I called a friend and they picked me up. I was able to stay with them until my flight left.

My sister had me stay in the Bronx with her and the family of her college friend (where she was staying). It was for several weeks. We went up to see my father’s side of the family and my Aunt Pat and Uncle Paul said I could live with them, but I didn’t know them then. I wanted to go live with the Williams’ family. They told me if I ever needed anything to call when they moved to Missouri the same week of the first episode of being thrown out. She told me they would have a family meeting and let me know. They took a few days. The answer was yes.

The Williams extended family

The Williams extended family

What I learned later was that my father promised to send them money to help with the expense of raising me. I was having a lot of illnesses, bronchitis, and what not and I wasn’t eligible really to be on their insurance. In retrospect I am not really sure how they even got me registered to get into school because they weren’t my guardians and my father did not have the legal right to give them that. There was also a lot of fighting going on between Kelly and myself (and really I don’t even remember what that was about). Finally Garnith brought me in to her bedroom and said that they really couldn’t do this anymore. That she loved me so much. My sister was going to file child abandonment charges against my mother and she was getting me a ticket to New York so I could be placed in a foster home close to SUNY Stony Brook where my sister was a student. My heart was so sad but at least there was a plan.

In the meantime, I wrote my grandmother. I guess somehow my mother saw it, knew where I was and called their house. I will never forget when Garnith sat there and told my mother off. Someone for the first time in their life stuck up for me. Not even the teachers at my school stuck up for me when I shared with them about the abuse going on at home. It was a different time and my mother was a masterful liar.  I told Garnith how much I loved her for doing that, but I needed to be gone tomorrow. I knew my mother. My mother was going to send the police and she would technically be “harboring a runaway” (even though I wasn’t a runaway–this is the way my mother twisted things). Just to be safe, even though the plane I was going to be flying on was going to just stopover in Chicago and go on to New York, we decided to have me switch airlines and then continue on to New York. Remember I was 14 and I was going to do this alone.

I had a nice talk with Kitchel before I left (see picture below). That was the last picture I took before I left them. Wayne drove me to the airport and I enjoyed the time we spent together talking about things. Later I found out at that very moment, the police showed up on their door. Kitchel was home and invited them in and said, “She’s not here.”

Last picture I took before leaving

Last picture I took before leaving

I got stuck in Chicago because of a blizzard and I had zero money on me. I was so hungry. The flight was cancelled. My sister, who was meeting me at the other end, went home to her friend’s house. Around midnight though, they let the plane go to New York. The stewardess was more than happy to give me a second dinner when I explained my situation.

When I arrived in New York, no one was there to greet me because they all thought my flight was cancelled until the next day. Without the benefit of cell phones and having no money to make a phone call, I tried to reach my sisters. Eventually we did connect and I was informed about the visit by the police to the Williams’ home.  My sister added that the police may be looking for me and keep low. Here I was — 14 years of age — its about 3 o’clock in the morning–and I’m wanted by the police!  It wasn’t like there were any crowds to blend in.  I sat in the baggage claim area and just waited with confidence like there was nothing wrong.

I kept in touch with the Williams family through letters and phone calls. As adults, Kitchel wound up in Houston and we spent a lot of time together. I believe (I could be wrong) that they moved away, but then were moving back. Kitchel got to stay with us at the house we now own for I think it was a month until she could find the right house. She stayed in what is now Patrick’s room. I felt privileged to be able to help her as her family helped me.

Comparing pregnancy bellies at I think 16 weeks (in The Woodlands).

Comparing pregnancy bellies at I think 16 weeks (in The Woodlands).

Having her here in Houston afforded many benefits as her family would come to visit. They also had family in a town about 2 hours from me. When Garnith would introduce me, she would tell people I was her “other daughter.” Kitchel and I had children within 3 weeks of each other. Her daughter and Patrick got to be around each other for several years before they decided they wanted to go home to Missouri. That day was a sad day because I felt my sister was leaving and I did not know when I would see her again.

Kitchel and me with our husbands and babies.

Kitchel and me with our husbands and babies.

I know they knew how much they meant to me. The pain of their deaths I felt bitterly. They saved my life. They provided normalcy in a life that was so upside-down it wasn’t funny. I am certain that they helped me have a different life as an adult and not repeat the mistakes and patterns of my mother and father. Garnith’s laughter rings in my ears daily.

The picture was snapped and we knew that it likely wasn't a good picture (days before digital cameras existed).

The picture was snapped and we knew that it likely wasn’t a good picture (days before digital cameras existed).

So Garnith suggested they all do a photo where everyone was laughing.

So Garnith suggested they all do a photo where everyone was laughing.

This family risked a lot to help someone they saw desperately needed it. They made a difference. They are loved and they are missed. They are my heroes.

Forever in my heart.

Forever in my heart.





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Movie: Children Should Not Be Taken to “Hacksaw Ridge”

5 11 2016

Dear “Idiot Parents” whose family occupied seats in Row D, seats 15, 14, 13, and 12 of the Showbiz Cinema in Kingwood, Texas on Friday, November 4, 2016 at the 7:10 p.m. showing:

You know who you are. Several times during the movie we made direct eye contact as I glared at you for a few minutes then looked at your son, then looked at you and glared some more. He looked to be about 7 or 8 years of age. I would like to think that maybe you brought him into a movie where you didn’t realize what was going to be shown on screen. I would like to give you the benefit of the doubt. Once you saw the graphic violence, you should have taken your son out of the theater. I would have.

This is not a “Call of Duty” video game. Director Mel Gibson stated he wanted to make it feel real; he didn’t want to shelter the audience from the horror of war because it only made the story of Desmond Doss more compelling that this man of faith enlisted after feeling called to help stop the evil after Pearl Harbor. Desmond Doss took the 10 Commandments very seriously when God said “Thou shalt not kill.” Desmond was real and the story is real. The Bible was Desmond’s weapon of choice versus a gun. Maybe you thought it was more a story about a Christian being able to serve their country as the first conscientious objector to go on to be awarded the Congressional Medal of Honor. Maybe you thought it was a story about a man with a Bible having survived one of the most bloody battles in the Pacific campaign on the Maeda Escarpment (which came to be known as Hacksaw Ridge) in Okinawa. Once you saw it wasn’t, you should have taken that child out of this theater.

The online trailer of the movie does not really adequately gauge or prepare you for what you will experience on the big screen: The sounds made your body startle including bullets hitting a helmet or the knife or bullets going into a body. Entrails, brains, limbs, and blood all went flying. Heads were cut off. There was blood-curdling “I’m dying in agony” screaming. Rats were eating bodies. Flamethrowers were burning people alive. There were massive screams of agony. Many of these were in close-up shots. Mel Gibson was effective in getting you to feel like what it would be like to be in war without having the injuries. I would say that is was even more graphic than “Saving Private Ryan.” I left the theater in tears and they didn’t stop for quite some time. I was also crying for your son. I imagine tonight your son will have nightmares.

I have become a great observer of behavior with my nonverbal son with severe autism. I watched your son a lot tonight because frankly I couldn’t watch what was happening on the screen and my head was turned in the direction of my husband who happened to also be in the direction of your son. I was deeply concerned by his body language. But you wouldn’t have seen that because you and your daughter were inappropriately laughing during some of these scenes; your husband never looked away from the movie. I had my head turned away from the screen and put my jacket up to my forehead to shield me from the graphic depiction of war. Your son turned his head in my direction and we made eye contact. I was wiping away tears from my eyes; he gave me a sad expression that said, “Yeah, I agree with you.” I gave him a look like I was so sorry he was being forced to stay there. He returned looking forward, but his eyes were not on the screen. They were looking down and around. He was biting his fingernails a lot (he wasn’t at other points in the movie). He shifted a few times so that his body wasn’t directly facing forward. His lips were pursed at times. In other words, he was stressed.

A child that young should not be in a movie that attempts to make war as real as possible. This movie is for adults. There have been several reports of adults walking out not because it was a bad movie but because it was too realistic for THEM to handle. The “R” rating says children under 17 cannot be admitted without being accompanied by an adult; it assumes the adult will have the good judgment. Even better would be for an adult to pre-screen a movie to discover if it is appropriate or not for viewing of their child. In all honesty, this movie should have gotten an NC-17 rating. I never thought I would see that moment where a child goes from living in a world of innocence to a world he is too young to see. At the end of the movie, I not only clapped for the movie and had tears streaming down my face for this man whose story I never knew, but also for a world that exposes children to adult subject matters too soon in their lives.

May God be with that child as he tries to work through all he saw tonight on the screen. May God give him peace in his slumber. I will be praying for you.

By all means, SEE THIS MOVIE. It should be best picture next year at the award ceremonies. But leave the kids at home.