The 2011 Bowen Backyard

26 12 2011

The Bowen Backyard 2011

We hope this letter finds you all well and happy. It’s funny how after Halloween things churn into high-gear. This year has been quite eventful for us.

Patrick’s learning accelerated. It is going to be hard for me to share everything so here are the highlights: He now communicates with an IPad. His verbal communication has increased, too, but it is not as predictable. He greets people with “hi.” Recently we’ve heard a phrase that sounds like “go away” which sometimes is appropriate to the situation and sometimes is echolalia. Patrick is now back to playing soccer and by this fall was working well with a teenage buddy. His basketball throw is improving as well; he has gotten the ball in the hoop, too. He is getting better at pressing the right numbers on the microwave after we give him a verbal prompt of what number he needs to press. He attended a concert at Miller Outdoor Theater & passed out flyers about the school afterwards.

How wonderful it is that our community is becoming sensitive to the needs of our kiddos. He’s attended several sensory-friendly movies, like Rio, The Smurfs, etc. He has also had field trips to Chefs-2-B where he created his own pizza. Jeff and I took him to the planetarium and museum. He did not want to sit in a recliner chair, and fortunately, the museum had regular-backed chairs for those differently-abled. He enjoyed the energy exhibit. When we got to the gem/jewelry exhibit, he helped me try to find the exit very quickly–typical male! You can view some Patrick videos on http://www.youtube.com/user/JadeKirra (my Jedi name–no laughing; geeks rule!)

During spring break, he used his IPad independently to say, “Mom, I need help” and then he verbally said, “I need help” right after it. These are always surreal moments to us. He was playing Connect 4 independently with a peer at school, a child who I can say has actually been as close to a friend to Patrick as he has ever had. It’s fun to see him laughing again. He was shown the “ice” button in a Subway store. He kept pushing the ice button and laughing every time ice came out. He reminds us of the beauty of living in the moment. He enjoys using the self check-out areas of the store with the scanner and knows to scan it & put it in the bag. He helps placing items on a conveyor belt from the basket and adores the debit/credit swipe computer, so we got him a gift card that he can use to make his own purchases. In May, he attended his first wedding. We dressed him up in nice pants, a shirt and a tie; he looked so handsome.

Patrick in his first tie, and not a clip-on

He refused to keep his shirt tucked in, and we gave up the struggle. One must pick the battles to be fought.

During the summer, he went sailing for the very first time and enjoyed it. This fall the school has been working on academics and activities that will lead to employment (office work, stacking cans, etc.). He has begun to understand the concept of talking on the phone and is following simple directions given.

Yeah, I really don't like that hat. Get it off.

While things sound all peaches and creams, we do have our trying moments where we really hate autism. As with all parents, we deal with the “teen attitude.” Patrick will be 16 on December 17. Our baby is almost 6 feet tall.

Mom feels like a hobbit here.

The best news for us and for Patrick came in June when I signed the documents. The school district is now paying for Patrick’s private school tuition, the bus drive, and a private agency to do speech therapy with him. He will get OT through a school-provided individual who will go out to the school. WE WON, WE WON, WE WON! Seven long years of battle. When they went to observe him at school, his progress was undeniable. It was done in a simple meeting; no due process; no mediation. The sense I got from that meeting was that this would be permanent for the rest of Patrick’s school career, even though they have to review it year to year. The burden that lifted off our shoulders was immense.

The year has been busy for us as well. I left the science fiction website I was writing for in January and a month later got an extraordinary opportunity to be part of something called Fox VIP, at the recommendation of our local Fox station. I continued to write and promote shows, and now I was getting all these presents. Out of all the things I received, my favorites were a signed “Fringe” script,

The signed Fringe script. Treasured forever.

my “So You Think You Can Dance” shoes,

So You Think You Can Dance Shoes Thanks for FOXVIP

and my “New Girl” Adorkable T-shirt.

My "New Girl" adorkable T-shirt

I also had an opportunity through this association to fly out in May to Los Angeles to the American Idol finale show (airfare, hotel, spending money all covered). Sadly Jeff could not go with me, so my friend Glicel did.

Delays, delays, delays

We met up with my brother-in-law for lunch & dinner with a friend.

Me and my brother in law.

Robert Meyer Burnett, my friend Glicel, and Me at Gordon Ramsey's restaurant in the hotel.

I think I got about 9 hours of sleep during the 3 days involved.

Between Feb and April, I did a lot of work on the school’s Rock Autism benefit.

My semi-rock look. Kids were going to be there so I had to tone it down.

The week after was our Boots and Bling Gala (April 2011) in which 320 people came out to support Patrick’s school at The Woodlands Resort and Conference Center. I was able to help with the event as it approached and afterwards. Being involved with Patrick’s school is deeply gratifying. I would do anything for them. They are the heroes who help hundreds of children.

One half of the people there.

The other side of the room with the dual screens, each for each side.

In October, I went to visit my sister in NC; I had not seen her in at least 5-6 years. Out of all the things we did during the extended weekend, our trip to Cherokee was my favorite. I adore learning about other people’s cultures and history, but most especially their spiritual/religious beliefs.

Oak Grove Inn?

Cherokee, North Carolina

As December beckons, I am in charge of the book fair at InKids and now am the print/promotions chairperson for their Boots & Bling Gala 2012. Being such, I want all my Houston area friends to come. It is so much fun. Save the date: April 14, 2012 at The Woodlands Resort and Conference Center on North Millbend in Grogan’s Mill. In June, I attended my first CD release party of local talent who I became familiar with during my efforts of Rock Autism.

I continue to blog at here, tweet http://twitter.com/pbmom, and you can find me at Facebook here:  http://www.facebook.com/profile.php?id=1535065933.   For as many joys and blessings that have come into my life this year, sadness also visited in the span of 2 months with the tragic death of a friend’s son, the expected death of another friend, Joe, and the unexpected death of my friend and neighbor of 15 years, Lenie.

Jeff and I did manage some time away in January of 2011 to Dallas to the Women of Sci-Fi Convention where we got to speak to Alaina Huffman,

Alaina Huffman

Katee Sackhoff, and Tricia Helfer for a considerable length of time.

Katee Sackhoff

Tricia Helfer

In addition to their Q&A sessions, we also got to see Q&A sessions from Nichelle Nichols (of Star Trek), and Yvonne Craig (the original Batgirl).  Erin Gray (Buck Rogers) was also there as was Morena Baccarin (Stargate SG-1, V, Homeland). Jeff thought it was funny that when he would come back from going to the bathroom, I would surrounded by a group of male geeks chatting with me about what I thought about this show or that show, how I felt about the female additions to Human Target that season, and into more heavy anthropological and cultural advances that have expanded the once exclusive male areas of geek to women, like the expanding roles of lead female characters in video games.  The male-geek-to-female-geek ratio was 10:1 if not higher. We also got to meet up with another Twitter friend who flew in from Vancouver, British Columbia, and met some other people through him. I also had breakfast with one of my high school friends from New York. She hasn’t changed much at all in all these years.

ScoobyKoo from Vancouver and Me at Women of SciFi Convention, Plano, Jan 2011

Jeff has been extremely busy at work, taking on new responsibilities as a member of his company’s safety team. Since he works for a utility company, the emphasis on safety is extremely important. Some of his duties include conducting monthly safety meetings, bringing in industry speakers, CPR training, blood drives, managing the group’s website and content, and preparing his business unit for safety audits. In addition, his work has picked up significantly in his department as the company is building new power plants. He often states to his coworkers that there are not enough hours in the day! Jeff continues to exercise and has brought Patrick along on his two-mile walks of our dog, Maddie. We think that this and other physical fitness activities have helped Patrick improve. In his spare time Jeff continues read his books and play his videogames.

We would like to close with a request. If you find yourself wanting to give to a charity on or before Christmas Day, please consider helping Patrick’s school. They are a not-for-profit, so your donation is tax-deductible. In August, Patrick’s program was able to double in expansion. Even though parents do pay tuition, not all costs are covered. One hundred percent of the money stays in the school and at least 85% or more goes directly to the children. We have been honored already by the response of my friends on Facebook and Twitter, and have raised our goal twice now. You can make a donation by going on-line to: http://www.firstgiving.com/fundraiser/hildabowen/annual-campaign-2011 We wrote a story on there as well (similar to my Rock Autism speech). If you are leery about using Visa/Mastercard, then you can send them a check directly to (just attach a note that it is in honor of Patrick). Allison Boyd, Donor Services, Including Kids, 5364 FM 1960 East, Humble, Texas 77346 Make it payable to Including Kids Thank you for your consideration in this. Even $5 helps.

May we share in the song of the angels, the gladness of the shepherds, and worship of the wise men. Close the door of hate and open the door of love all over the world. Let kindness come with every gift and good desires with every greeting. Teach us to be merry with clear hearts. May Christmas morning make us happy to be Thy children, and Christmas evening bring us to our beds with grateful thoughts, forgiving and forgiven. Peace & blessings are wished to you and your families always.

Happy Holidays!
Hilda, Jeff & Patrick


Comments : Leave a Comment »
Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Categories : American Idol, New Girl, Personal, So You Think You Can Dance, Stargate, TV shows

Christmas Wishes for 2011

26 12 2011

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

When we sit down to our meal, I recount our list of blessings. Every year, the list seems to grow. I start off slowly, thanking the Earth for the food, the people who planted it, grew it, harvested it, and transported it so that I could enjoy the meal of which I am about to partake. I make sure to thank the turkey for its life. Then the tears inevitably come–for the people who are going hungry, who are homeless, who are hopeless, and who are loveless. I may have helped some over the year, but did I do enough? NEVER. There is always more an individual can do. I gratefully acknowledge the people who have sacrificed their lives–our military and the quiet heroes of daily life. I say a blessing to those families who are grieving the death of a loved one; holidays can be the hardest times in their lives. I pray for those contemplating suicide that they find some reason to hang on to this life just one more day.  Then I’ll begin to recount all the blessings currently in my own life.

While I may moan or complain from time to time, my life is very good. Patrick continues to flourish. I have a loving family, a roof over my head in a fantastic area to live, food in my stomach, a decent car to drive, great neighbors, wonderful friends, and an employer who is continuing to let me try to work each day as much as I can instead of filing for disability.

The things I have on my Christmas wish list require the cooperation of others in order to achieve:

1. World peace. Sounds corny, I know, but I’m an idealistic fool who thinks this is actually possible. Before that happens, we will have to get rid of prejudice and hate. In order to get rid of prejudice and hate, we need better educated people.

2. End to hunger: With all the food we have and waste every day, we could feed the world.

3. A cure for autism: Just because I love my son and accept his diagnosis, doesn’t mean I would not want to make life easier for him, and for other parents not to have to even take this journey. The life lessons have been tremendous, but at what cost?

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

While I am waiting for those things to happen, I will continue to try to do my part, helping one person at a time, one day at a time.

People tend to store their “good will towards men” for just the Christmas season. As they pack away the Christmas decorations, the spirit of Christmas leaves them as well. Perhaps I should dream smaller. Perhaps my ultimate Christmas wish is for others to find the heart of Christmas in their daily lives and keep that siren song alive year-round. Instead of the 12 days of Christmas, we would sing the joys of 365 days of Christmas. Can you imagine what an astounding force of nature we as a people would be?


Comments : 1 Comment »
Tags: , , , , , , , ,
Categories : Autism, Personal

An Autism Christmas

24 12 2011

For families with kids with autism, Christmas is a challenging time. Many children with autism have co-existing diagnoses, like sensory integration disorder. This is a neurological disorder that was first studied in-depth by A. Jean Ayres, Ph.D., OTR. Dr. Ayres describes sensory integration as the ability to organize sensory information for use by the brain. An individual with sensory integration dysfunction would therefore have an inability to organize sensory information as it comes in through the senses. To give you an example, many children with autism who can speak will tell you that fluorescent lights hurt their heads. They can actually hear the noise made by these lights and it causes pain within their bodies. One of Patrick’s responses to this disorder was that certain noises he would hear would make him dry heave and eventually throw up. We noticed this response with changing the plastic bag in the garbage can, lawnmowers, leaf blowers, etc.

We were ill-prepared for his second Christmas morning (when he had just turned 12 months of age on December 17) when we had him try to open a Christmas present. Apparently the sound of the tearing paper had the same effect for him. I’m thinking this is NOT normal. Kids do not throw up opening their presents. I added that to the list of “weird things about Patrick” that I had begun gathering.

That Christmas it was more of a curiosity for me, as he had not yet been diagnosed with autism. The scientist in me wanted to see if I could correlate a direct relationship between the two items by running several trials to see if we could reproduce that at different times and settings. There indeed was a direct correlation.

When the third Christmas came around, he was age 24 months. To see it happening again brought grief to my Christmas as we had gotten the autism diagnosis 6 months prior.

By the fifth Christmas morning, my heart could no longer bear the pain Christmas morning brought. My husband and I decided that on Christmas Eve after Patrick was in bed, we would open our gifts to each other and that others gave us so that when Christmas morning came, we would no longer associate it with a grieving heart.

As we worked with him on overcoming his sensory obstacles, we would try one present. He would tear it once; we would put it away and come back to it later. For many years, we practice this same ritual. Eventually he could tolerate the noise, but the look on his face said “chore” versus “joy.”

Four years ago, things suddenly changed for him. We were opening a gift on Christmas Eve and he looked curious about it all. We asked him if he wanted to open some presents with us. He gave us a huge smile and sat down with us. He would rip the paper and act like he was startled and would begin to laugh hysterically and clap his hands. He had recently begun to like the feeling of an adrenaline rush and loved being scared and startled. The tearing of the paper scared him, he experienced a rush of adrenaline, and he liked that. WHO CARED? My child was opening up a present and enjoying it.

Patrick opening gifts.

Patrick opens his present one piece at a time.

We allowed him to open up every single gift that evening, and then Christmas morning, he got to do it all over again (because we rewrapped everything). The next year, the number of gifts under the tree was less, but that did not stop us. We wrapped up old toys, put current clothes in boxes, just so we can experience the magic for which we yearned almost a decade. Christmas is about miracles, big and small. This time it was the simple act of opening up a gift about which others do not think twice.

Find the joy of in the simple act of ripping off the paper of each one of your gifts this year, one small piece at a time.  Savor the moment.  Don’t take that experience for granted.  Remember that others in the world cannot simply open a gift that you do without a second thought. 

Happy Christmas Eve.



Comments : Leave a Comment »
Tags: , , , , , , , , , ,
Categories : Personal

Acts of Kindness Part 2

24 11 2011

Back in 1998, when we were struggling to get Patrick to an autism program in Massachusetts that we hoped to be his best chances at recovery, kindness came from everywhere: Family, friends, strangers donated, held fundraisers, etc. to help us earn the money we needed (starting in July). On December 31, 1998, the day we left, we raised the final number we needed: $15,000. It was difficult for me to accept kindness like this, but I had to swallow my pride to first ask for the help, but learned to accept it with humbleness and gratitude. For many years, I had a web site on AOL (remember AOL Hometown?) where any one of the donors could go to keep up with their investment. After all, it was not only an act of love but an investment in the life of another.

PBFundraiser

My friend Jennifer's church allowed us to sell bear ornaments as a fundraiser.

During the course of having Patrick, my boss has done a tremendous number of things that I cannot name for reasons of confidentiality. Even though I don’t seem to be able to produce full-time work anymore, she allows me to stay hoping that one day I can get past my medical issues and produce at full-time or even part-time levels again. I do know that without the things she has done, our lives would be very different today.

Last year, I got another WOW moment to add to my top 10 kindnesses of all-time. I put out to the universe on Facebook that we had planned to go to the Adam Lambert concert but because every penny now was invested in that fabulous private school Patrick was going to, the results of which they had seen unfold right on Facebook, that if they heard of any contests to win tickets to please let me know. Instead, my friend Melissa went out and bought us not 3 tickets, but 4. She told us we had to take Patrick and gave us an extra seat to buffer ourselves from other people if necessary and a place to put his stuff. In the tickets, she also gave us spending money (for parking, presents, etc.) Melissa will tell you to this day she had never done anything like that and several times stopped and thought she was crazy for doing it. This kindness had “kindness” percussions. Going to the Adam concert led to know a certain person who would go on and help my son’s school during a fundraiser called Rock Autism, Joey Guerra, music critic for the Houston Chronicle.

Patrick's favorite: The laser lights.

The next big kindness came from an actor named JC Williams (@JustChillin21) who has been on many shows, but I came to know him because he was on Stargate Universe, a show I blogged about on Fox 26 Houston and a volunteer science-fiction-fan-run website. When the show was cancelled, there was a big sale of prop items in Vancouver, British Columbia. There are so many Stargate fans, many of whom tried to find people attending the sale so that these people could get them something. I thoroughly understand that level of passion, but I never wanted to place an undue burden on anyone living in Vancouver so that I could benefit from such a request. I feel that such a request would put in doubt the true nature of our relationships in some cases.

I don’t remember which Saturday it was, but I am hardly ever in my office and I am hardly ever on Twitter on the weekend. But this short time span I was. JC sent me a tweet asking if he could pick me up something and was asking our sizes. We communicated back and forth for a little while and in the end I told him I’d just be happy with a sticker or something; I’m not greedy. After the sale, he would tease me about sending me off a “box” of stuff. A box???? From personal experience, even mailing a small box from Canada to the United States is expensive. I felt excited yet unworthy once again. I am glad that it took several weeks to get here so I could shed the “unworthy” label and just be excited. It arrived on a Monday, July 11, 2011. My husband wanted to be there when I opened it, and I needed him to record the event. Since JC could not be here in person to see my reaction, capturing it on camcorder and putting in on YouTube seemed like a good idea. Meanwhile the day before I was bit by a spider and my arm started swelling and about the time I opened this, I was running a fever, but with the surge of adrenaline in my system, you can hardly tell I was even sick. They say a picture is worth a thousand words, so my videos will say more:

I first open the box here (I’ve lost a lot of weight since then):   Click here for the video

I missed sharing about some items in the box:   Click here for the video

I tried on one of the gifts here:  Click here for the video

Also among the box, not put on video (because at that time of the video I wasn’t sure if he wanted to remain anonymous or not), were these pictures (don’t faint friends):

JCWilliams

J.C. Williams, actor, dreammaker

JC put a lot of thought and love into this box he was sending. He went out of his way to meet up with one other Stargate Universe actor, Herb Sommerfeld (picture below). He also tried to get one other’s picture and autograph for me, but was never able to catch up with that particular actor.

HerbSommerfeld

Herb Sommerfeld, actor, teacher

You can see JC’s great work on a recent episode of Sanctuary, “Resistance.” Click here.

Finally we close out this year with the overwhelming support I’m receiving for Patrick’s fundraiser for his autism school’s end-of-the-year annual campaign. Even though we are in a tough economy, people have been giving amounts from $5 on up. We met our first-placed $1000 goal. When we reached that, I upped the goal to $1100 and we’ve reached that. Now the goal stands at $1200. The fundraiser goes through Christmas Day. If you would like to see your money make a huge difference, knowing all the money stays at the school, most of it directly for the support of the kids there or creating programs so more kids on the waiting list can get help quicker, then this is a good place to give. Thank you to all those who were able to give, and thanks to those, too, who found themselves unable to give, but forwarded the message to others. Your acts of kindness astound me.  If you would like to help us raise money for this wonderful school for autism, please click here.

 

Patrick

My life teacher and inspiration, Patrick



Comments : Leave a Comment »
Tags: , , , , , , , , , , , , , ,
Categories : Personal, Stargate

Join Team Patrick!

14 11 2011

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

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

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

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

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

Blessings to all.

 

 


Comments : Leave a Comment »
Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Categories : Autism

Despair

20 04 2011

For all the wonderful moments you experience with autism, there are exceptions. Back in 2005, I was deteriorating neurologically. I remember having a bunch of sticky notes all over my wall just so I could get through the day at work and not forget to do something. I was falling for no reason. I started to have to walk with a cane. It was at this time, my son’s school district was failing him and the fighting intensified by a factor of 10. Inside my head I was screaming, overwhelmed by what was happening to me, to him, unable to stop it. The more I tried to hold on and not get sucked into the vortex, the worse it got. The only thing I could do was let go and let God. Please once again, I do not mind if you share, but please respect my copyright. This, too, was published in another book of compiled works.

Despair

Drowning in a sea of suffering,
Sucked into a vortex with no vertical end,
Spinning hopelessly out of control,
Screams stifled by the void surrounding me.
Loneliness engulfs me,
Crushing me with its weight.
I let go and flow with it.
Only then do I reach the bottom
Where I’m on top of the water again,
Swimming for shore.

Hilda Clark Bowen
Copyright ©2005 Hilda Clark Bowen


Comments : 2 Comments »
Tags: , ,
Categories : Uncategorized

Graced by God

16 04 2011

This is a poem I wrote for my son back in 2005 that was subsequently published within a larger collection. In honor of Autism Awareness Month, I’d like to share this with you all. I do not mind if you circulate the poem, but please honor the copyright.  He was diagnosed in 1997 (at about 16-18 months of age) with the classic form of autism.  He is now 15.

Graced by God, you were given to us,
but like quicksand, you swiftly left
into a silent storm of autism.
Diving in after you, unwilling to surrender you
to this entity that ensnared your soul,
we made contact.

Your eyes, emerald and gray, began to meet ours again,
slowly holding the gaze seconds longer.
Like ants on a mountain, we fight for every inch of ground,
the elements always undermining some of the territory gained.

With streams of overflowing gratitude for every look, every touch,
every sound, every action you accomplish,
feeling blessed for the differences that set you apart,
that make you our very special child,
graced by God and given to us.

Hilda Clark Bowen
Copyright ©2005 Hilda Bowen


Comments : Leave a Comment »
Tags: , , , , , , ,
Categories : Uncategorized

What Including Kids Has Done for My Son

13 03 2011

This is a copy of a testimonial I wrote in December 2010 for Including Kids, Inc. for them to use in their fundraising efforts. There are several fundraisers coming up for them including “Rock Autism” and their Boots & Bling Gala. For those considering attendance at either, I want to share our journey and how special this place is.

Patrick was diagnosed in 1997 at 18 months of age, when autism was occurring in 1 in 10,000 children. From Jan 1999-May 2004, our school district did a great job educating him, even introducing applied behavior analysis (ABA) to him in 2001 at which time he made significant achievement in growth and learning. A decision by one administrator in May of 2004 changed all that. By 2006, Patrick lost, by their testing, 81% of all the skills he ever learned. For the first time ever, Patrick started having serious behavior issues. Once all his skills to communicate were gone, he had no other way but to express communication other than in self-injurious behaviors. All the money and time that we had invested in Patrick privately to pay for speech therapy, a home program, and training for the school staff became a significant loss. But these losses would never match the grief of seeing our child go from a happy, loving, gentle soul to a child angry, frustrated, and hurting himself so badly that it looked like he had been abused. The stress of fighting with the school district to have them provide, at minimum, what the law says they should, had taken a significant toll on our family life and health. When the incompetence hit an all-time low and unethical behavior reared its ugly head, the only choice to protect him was to withdraw him. We knew when we offered to pay for proper training and oversight for his program and they declined, it was more about their infighting with us than it was about Patrick.

We called Including Kids, Inc. to see if they could help provide in-home consultation for our potential homeschooling when we learned about their new program, SOAR Academy. When we met with staff and were asked if we thought Patrick was a good fit for the program, we honestly did not know. Autism had taken a huge financial toll already, so we did not know how we were going to pay for this. However, somewhere in our souls, we knew this was the right choice. We took a step off a cliff not knowing if there was going to be a safety net to catch us on our fall. All we had was our faith that somehow everything would be okay.

Phrases we often heard were “given his intellectual deficits, how much do you think he can learn?” “Don’t you think 10 signs in 1 school year might be too much for him to learn?” In the first 9 days at InKids, he was already signing 3 to 4-word sentences and had learned 3 new signs. Every day I took the long drive home, I cried tears of joy because he was finally with people who saw his limitless potential. The sheer number of accomplishments from his August to December 2010 tenure at InKids would fill several pages. After one month, he tolerated his first rock concert, just one of the many firsts. He cares about things now and wants to make choices. He is shaking his head yes and no in response to questions appropriately. Clothes are being put on with just supervision. Two events stand out in my memory during this time period. A chip went down his throat the wrong way and his eyes started to water. I asked him, “What’s wrong?” He signed, “Help me” and then put his hands around his neck. It has been one of our greatest fears that Patrick’s life span would be cut short because he could not tell anybody what was hurting him. In 11 years, neither we nor the school district could teach him this concept. Yet, here in this magical place, they did it in 4 short months. Another beautiful moment occurred when I was sitting on the bed. I asked him to sit next to me. He did, then turned to me, tapped his fingers on my chest and said (verbally), “Mom.” A single-word symphony I will forever cherish. New talents have emerged such as planting things and cooking.

Patrick has moved from the darkness into the light again. He shows pride in his accomplishments. His sense of humor has returned with a vengeance. We often get notes home that tell us he just would not stop laughing all day long.

It is now obvious to us that since the school district did not believe he was capable of anything, he had no reason to prove anything otherwise to anyone. Even our efforts in our home program were failing because Patrick had no self-esteem. It was one more thing that was taken from him because of that one decision by one individual to close the district’s successful autism program. Now we see the smiling, happy child that he was prior to August of 2004 again. The stress in our home life has been greatly reduced which no doubt has benefitted Patrick as well.

In August of 2010, we were not sure at all if SOAR Academy was the right fit for Patrick. Now, we cannot imagine our son being anywhere else. We are Including Kids Lifers. Each and every one of these people at Including Kids embody what it means to be a true teacher, not merely an educator. Their dedication to the children and to their families does not stop at the classroom. Because the approach is so intensive, this kind of support for children with autism is costly. There are children on a waiting list who desperately need this school’s assistance. Please help Including Kids, Inc. continue to operate and grow so they can create a pathway for as many children as possible towards a life of not only working and personal independence, but also a life full of the same love and happiness and pleasures that you enjoy. On behalf of our family, we thank you for your consideration.



 

Patrick

My life teacher, Patrick.


Comments : 6 Comments »
Tags: , , , ,
Categories : Uncategorized

Autism and the Vaccine Controversy, Part 2

20 01 2011

Patrick’s Story Continued

Once Patrick was diagnosed in 1997, I learned everything I could about autism. Truth be told, there wasn’t much on the internet yet about it. When kind people were sending me information, the chances were high that I already read about it. There was an interesting site I found that described different versions of autism. Two of the things on the list were “diet-induced” autism and “Candida-induced” autism (or autism that was induced by a systemic yeast infection. Long before I knew about Dr. Wakefield, I was already reading peer-reviewed research on the role of diet and autism.

When we returned to our pediatrician after the vaccine, and exclaimed, “Where did our child go?”, she ordered an ABR (auditory brain stem response — to check for deafness caused by the vaccine) and some initial lab work which returned showing high liver enzymes and a high platelet count. His pediatrician told us this indicated that his liver was overburdened, processing out some toxicity. This was 2 months after his MMR/DPT/polio. “This happened within 24 hours of the vaccine.  There has to be a connection.”  There was a long pause and a deep breath: “It would correlate” was the response.  A more comprehensive battery of testing was ordered.  While we were waiting to get this back, the psychiatrist who diagnosed him officially with autism also ordered a Fragile X and a few more lab values.   The heavy metal toxin screen came back indicating that he had high levels of zinc, nickel, mercury, aluminum. He had low levels of magnesium, potassium, iron, manganese, silicon, and cesium. He had a high calcium/magnesium, zinc/iron, zinc/cadmium, levels and low calcium/copper, calcium/zinc, and iron/copper. I know that probably is Greek to most people. Low magnesium levels may be implicated in fatigue, muscle cramping, and depression (hyperirritability, hyperactivity, muscle twitching and nervousness as a response). Low potassium may indicate fatigue and stress, effects neuromuscular response, ion transport, and energy production. Low iron most people are familiar with being associated with iron-deficiency anemia whose symptoms are weakness, fatigue, paleness, palpitation, headache and shortness of breath. High zinc levels were associated with poor utilization and may be preliminary to zinc depletion. Pyridoxine needed to be added to help maintain proper zinc levels. Low manganese levels could be seen in connective tissues disorders (this was fascinating to me because of our family history of autoimmune disorders). Low vanadium levels may affect bone morphology and aortic cholesterol. Low silicon levels may be associated with decreased calcification of the bones and teeth and abnormalities of the articular cartilage and connective tissue. It is a biological cross-linking agent in collagen and connective tissue. High nickel levels show high tissue destruction, especially in epithelial tissue. Mercury and aluminum are neurotoxins. 

I learned about a group called ANDI (Autism Network for Dietary Intervention) from the Developmental Delay Registry website which was founded by Lisa Lewis and Karyn Seroussi, parents of children who had changed dramatically through careful implementation of home-based dietary programs. They helped other parents by showing them how to support their child’s immune system, combating yeast and bacterial overgrowths, eliminating certain foods. “Recovery from PDD” founded by Jean Lash had a child with autism who was then considered recovered by professionals. “The Association for the Promotion of Better Health” was founded to help parents interested in homeovitics which aimed to remove a child’s toxin burden.

The file I have on autism is about 2 feet deep just in the research papers I chose to print out. While other people were reading for pleasure, I was reading on how to heal my child.

I journeyed to the site of the highly regarded Dr. Bernard Rimland of the Autism Research Institute. His son had been diagnosed with autism when it was still considered very rare. He earned credibility in his field when Dr. Leo Kanner, a psychiatrist who first identified autism as a syndrome, wrote the foreword in Dr. Rimland’s book which put autism as a neurological disorder, not a psychiatric one. Dr. Rimland went on to co-found the Autism Society of America. His site had extensive information on the biomedical treatment approach to autism. We tried DMG (dimethylglycine) with Patrick but he seemed to have a reaction to it. With no biomedical experts in our area, I decided to place a call to them to see if they had heard of anything since it seemed relatively benign. The woman actually put me through to Dr. Rimland himself. Things were different back in 1997. He suggested that perhaps Patrick was reacting to an additive in the product and gave me a few places where we could purchase it in a pure form. We also put Patrick on a special vitamin product made specifically for children with autism called Supra Nu Thera from Kirkman Laboratories because it was researched that children with autism tended to have low levels of vitamin B and zinc. The list of things we tried for Patrick would blow your mind and I honestly don’t have enough space here to list all the different things and the different combinations.

I have meticulous notes that I have kept over the years. One of these includes a note for Patrick’s well visit in December of 1997 when he was 2 years old. He was being seen twice a week for occupational therapy for 45-minute sessions. Speech therapy saw him twice a week for 45 minutes. He was no longer in day care and home with me and making better progress. I was excited by the following: “Will tolerate us washing his hair now.” “Isn’t catatonic in his winter coat this year (which proves that I saw signs of his vaccine-injury long before his 15-month injection when he totally left us). “Gave me 3 half-hugs in the last 3 weeks.” He still wasn’t stacking things, talking, imitating, feeding himself, drinking from a cup, eating regular food, not pointing to things, not engaging in pretend play. Our concerns were about a rash on his face, biting his fingers. Things that made him dry heave and eventually throw up: A mylar balloon, Christmas tree, a different pacifier, or if he chokes on his own. He could only eat stage 2 baby food. The pediatrician, not knowing a lot about biomedical approaches, but certainly seeing the progress Patrick was making with whatever interventions we were trying, supported us in our efforts. If we needed a prescription for a certain item, all we needed was to send her some case studies to look over and she would let us know if she felt comfortable or not doing it. Sometimes she did; sometimes she didn’t. If she did not, we went on to try something else.

I read testimony from Washington, DC about parents whose children had reactions after the vaccine that were very similar to ours, but more than 20 years previous to my child’s injury.

I need to skip over how we decided on which home program to do because it is not relevant to the topic of vaccines except that the program we did choose had biomedical education as part of its curriculum. After Jeff attended the start-up program in early 1998, we received a letter dated May 1998 from other parents who attended who told us about how changing their child’s diet made huge improvements for them.

In November, 1998, our psychiatrist wrote us a letter for something that made us feel great. “I have examined him over the last year and worked with he and his family regarding guidelines and advance for Patrick. Over the course of our relationship, Patrick has made substantial gains given his parents high level of motivation and interest in his care. It is my opinion that given his parents’ motivation, interest and hard work, Patrick’s prognosis is excellent.”

In January of 1999, we attended our intensive program where we both learned the importance of diet in recovery from autism. Yes, you read that correctly: RECOVERY FROM AUTISM. We also had lunch with the now-recovered child who went on to graduate from Brown University. Can you believe that the medical community was so threatened that a mere parent could figure out a treatment approach that was considered quackery by modern medicine that this family received death threats? We asked him if he remembered any part of his life during autism and he told us of remembering swirls in yogurt.

It was then we worked on changing Patrick’s diet, switching him from his sugar-laden soy baby formula to rice milk. We turned his diet into a gluten-free, casein-free, sugar-free diet.  The child looked like he was on morphine (see picture below) before we started this diet.

Patrick in late 1998 right before we started the diet Jan 1999

  

Previous to the 15-month immunization, he looked like this:

  

Patrick with chicken pox March 1997 right before MMR

Patrick with chicken pox March 1997 right before MMR/DPT/polio

 

By the year 2000, Patrick’s lab values were back to normal. However, the damage was already done.   But by 2000, he was no longer getting sick so often.   No more reflux, no more colds, no more ear problems, no more sinus infections.  Several times we went a whole year without stepping foot in a pediatrician’s office for so much as a cold.  When going for a well-check, the nurse was shocked, “Oh, you haven’t been here in….a year?”  And he didn’t look like he was on morphine anymore. 

Our pediatrician gave us a permanent immunization waiver. In 2002, she wrote this: “Please continue Patrick’s medical exemption from further immunization boosters. For the foreseeable future, the possible consequences of further vaccination appear to outweigh the possible benefits and I have recommended to his mother that we not pursue further immunization at this time. I anticipate this exemption for the polio booster to be indefinite.”

In part 3 of this series, I’ll give you a look at what was being documented at the time in case studies.


Comments : 1 Comment »
Tags: , , , , , , , , , , , ,
Categories : Uncategorized

Autism and the Vaccine Controversy, Part 1

9 01 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Comments : 1 Comment »
Tags: , , , , , , , , ,
Categories : Uncategorized

« Previous Entries Next Entries »