blogforcharity.org

I have a blog that I write daily that chronicles the adventures (and misadventures!) of my family and our involvement in youth sports. (www.sportsmum.blogspot.com) Through this blog, I am able to find other writers like myself, who have similar adventures with their children, and in particular, those families with children on the autism spectrum.

Recently, I have found several articles and posts about families trying to go out in public with their children, only to be ostricized and ridiculed when their child has an autism “meltdown” - a common behavior of children on the spectrum. This subject really touches a nerve with me as I vividly remember times in our own life when we have been excluded from activities because our son could not cope with a situation.

Fortunately, those days seem to be a thing of the past for us but I have been thinking about what we went through, dealing with people’s reactions, and the injustice of THEIR behavior.

Families with autism spend most of their waking hours in various types of therapies, teaching their children appropriate behaviors, interactions, and coping skills that will one day enable them to “fit in” to the typical world. Through these sessions, families can learn various ways to minimize and/or limit meltdown triggers.

Wouldn’t it be nice if a therapy could be introduced for those NOT dealing with autism on a daily basis? Given that 1 and 150 children are diagnosed on the autism spectrum every year, everyone is going to have contact with an autistic individual at some point in their lives.

If there was some way to teach the rest of the world to not judge, admonish, ridicule and exclude children and families with autism, I would expect “meltdowns” could actually be minimized simply by lessening the stress these families face when they have to face the world!

I have been wanting to write about my feelings towards Easter Seals for a long time, but I have been searching for the right story. My wife, Ginny, has some good anecdotes, as she was on the local Easter Seals Board for more than 12 years and does have some personal stories to share. I love Ginny dearly, but it takes her twenty minutes to write a thank you note so I haven’t been counting on her as a guest writer. She is the type that must have just the right words, and I am fine with that.

Within the last week I have read several articles about a young woman named Bernadette Resha who has Downs Syndrome and is also engaged to be married! Bernadette has been a great advocate for Easter Seals and the Special Olympics. She is also a very accomplished artist. After reading Bernadette’s stories, it instantly made me think about my mother and her involvement with the Americans with Disabilities Act.

The ADA act has opened up some very important doors for the handicapped, especially integration into public school systems. Prior to the ADA many handicapped children were grouped with other children in similar situations. What good was that? They are “special”, had special abilities, but couldn’t interact with the “typical students”. Children with disabilities were discriminated against because they were different. With the ADA act, that all changed.

Now all disabled students must be integrated into regular classrooms. My mother was involved in getting two hearing impaired students into the Boardman Local School District, following the implementation of the ADA. Both of these students are now in college and have very promising opportunities . None of which could have occurred without the ADA, my mother, and their parent’s persistence.

As little as 17 years ago someone like Bernadette may have been sent off to a government run facility and not have had the opportunity to become the best she could be. Now, not only has she done so much, but she is able to enjoy it all with someone she loves. I have included a couple of her paintings below so you can see what a talent she really is and understand why her paintings now sell for hundreds of dollars.

On October 3rd, an appeals court in Los Angeles ruled that Freemasonry is a form of “religious exercise,” comparable to Christianity and Judaism. They saw “no principled way to distinguish the earnest pursuit of these (Masonic) principles … from more widely acknowledged modes of religious exercise,” said the ruling. The case involved the Los Angeles Scottish Rite Cathedral and the Scottish Rite Cathedral Association of Los Angeles. The groups had leased out the cathedral for other events such as concerts and dances, which was an apparent violation of zoning rules that restrict it to Masonic events only. The Masons had sought relief under the Religious Land Use and Institutionalized Persons (RLUIPA) act.

While I believe that it is every Masonic Lodge or Masonic organizations right to lease their facility to groups for other purposes, I don’t believe freemasonry is a religion. Freemasonry itself teaches toleration for all religions. Freemasonry has taught me moral and spiritual values. It teaches good citizenship, courtesy for your fellowman, dependability in ones work, compassion for the unfortunate; resistance to evil; help for the weak; concern for good government; support for public education; and above all, a reverence for God and love of fellow Man. In my opinion, having religion is the responsibility of a mason. Being a mason also means a responsibility to your family.

As a father, it is my responsibility to teach my children that reverence to God. On Sunday mornings, it is my responsibility to join my family in church. In preparation for our spring reunion,  on Sunday afternoons in the winter I enjoy practicing allegories with my brothers at the temple!

Although the principals of Freemasonry do more than just support the concepts of religion; it in itself is not a religion. Freemasonry is a brotherhood of men brought together for a common purpose, religious practices and beliefs are only one part of that purpose.

Four years ago this week, our family moved from our home in California to this town - our town - Youngstown, Ohio.

I have to admit, it was a very tough move. Why would anyone leave California? (That’s what most people asked us after we moved here…) I have to admit - I hated the weather in California - I wanted it to rain, just once in a while! But probably the more significant loss were the friends we made in the five years we lived there.

Our closest friends at the time of our move were the Tompkins - Ray, Tammy and their kids, Dylan, Amanda and Parker.

We felt a connection to Ray in this move as he had been born and raised in Elyria, Ohio. Through the years, he had shared with us many Ohio traditions, in particular introducing us to wedding soup. If you haven’t had it - you HAVE to come to Youngstown!

Because of knowing Ray, we knew we were coming to a great place to call home - if this state produced a man like him, it had to be extraordinary.

We had only really discovered how truly extraordinary Ray was about 12 months earlier when he was diagnosed with leukemia. Ironically, Ray was diagnosed the same day my husband John lost his job as a computer consultant - our families shared a truly life altering event together!

Of course - Ray’s challenge was far bigger than ours but he faced it with the most amazing spirit we had ever encountered! He was so strong in his faith in Jesus and his faith in his ability to battle this disease that he changed the lives of anyone who encountered him during his fight.

And it was a battle of epic proportions…first round of chemo and no trace of the leukemia - two weeks after the all clear, it resurfaced. Second round of chemo - blot clot on the brain…

About 8 months into the fight, it was determined that he was an excellent candidate for a stem cell transplant at the pre-eminent City of Hope Cancer Center; and his sister (from Ohio) would be a perfect donor. The transplant and follow up care were intense - near the end of his time in isolation in the hospital, in October, we left for our new home in Ohio.

At Christmas, Ray was well enough to visit us. Unfortunately, it was because his father suffered a massive heart attack on Christmas Eve and passed away. But Ray, Tammy, and the kids brought in 2004 with us - he looked wonderful - puffy from anti rejection drugs - but alive and still full of spirit!

We received a call one day the following June from Tammy. When I heard her voice I braced for the worst - the leukemia was back.

Then the complete shock…Ray had died…they didn’t know why - he just lay down and died.

But he WAS an extraordinary man - he fought an amazing battle - and he WAS from Ohio through and through…

Just like our adopted home here in Youngstown, the town that keeps fighting to come back, Ray fought all the way home to his Lord and Savior…

Ray carried the following scripture with him during his entire fight…His Love Endures Forever! I believe that is also true of this extraordinary man from Ohio…

Last evening there was a big celebration in downtown Youngstown to honor the new middleweight champion of the World - boxer Kelly Pavlik.  I picked my son Steven, up from after-school bowling to head down to the event. The first thing he asked is if I remembered the picture of Kelly we had received at last years St. Patrick’s Day Parade.  I told him I forgot it, which was a lie, as I didn’t really want to carry around a glossy 8 x 11 to  an outdoor event with thousands of people.  He resigned himself to this and stated, “that’s okay, I’ll have him sign my shirt”.  I thought - Yeah right, we won’t be able to get close to this guy, and you think he’s going to put his swollen paws on you and sign your shirt… 

I had decided to get there about an hour early as parking would be at a premium. We sat at an outdoor restaurant and had a couple of pops.   My pop happened to be a premium amber — it had been a long hot week and I was thirsty!  The champ was due to arrive at 5:30 so we moseyed over to town square around 5:15.  When he arrived the crowd (about 2000 strong) welcomed him with great passion. There was an area roped off, but that didn’t seem to matter, as many people pushed towards the stage. Not being able to see well, my 4 1/2 foot tall son worked his way up to the front row. This was all fine as I could see him well from my vantage. The only thing that worried me was that he was going to jump up on stage and ask the champ for his autograph right then and there. After about 40 minutes of proclamations and political speeches, the champ finally graced the mic, humbly thanking the Mahoning Valley for his win. Once done, my son decided to walk back over to the cheap seats with Dad.

As Kelly was leaving the stage controlled mayhem broke out as people tried to rush him as he made his way across the square to the downtown Buffalo Wild Wings; most certainly to have a pop of his own.  Steven told me we should follow as “he knew how to get in”. I’m thinking, yeah right– the group of about 30 people surrounding the front door will part like the red sea when we approach.  Somehow though, Steven had managed to get himself right behind Kelly’s deputy sheriff entourage and with dad in tow, marched right in behind “the man”.

Getting his autograph seem a bit more attainable as this bw3’s is pretty small. Personally, I was just hoping to get a picture of Steven with Kelly, to have him sign at a later date.  It appeared though that the champ was not there to sign autographs as we had heard his hands were still very sore.  They had even asked the politicians not to give him too tough a grip!

Now, I believe Steven is on his way to a career in sales — after about 10 minutes of sweet talking one of the fine men in blue, he was able to get his back in front of the champ and did achieve his goal. 

Unfortunately though, my hope for a great pic of The Champ and my son did not turn out the way I’d wanted — Steven looks great, but Kelly?…Let’s just say I expect the Champ really wouldn’t like the angle showing the top of his head…  

This past week has brought some great things for the Youngstown, Ohio area. First, our home town hero - boxer Kelly Pavlik, knocked out Jermain Taylor to win the WBO and WBC World Middle Weight Championship! Kelly showed true Youngstown form after getting knocked down in the second round then getting back on his feet to make a huge comeback and get the KO in the seventh. Being pushed around and knocked to the ground was something new for Kelly, but not for the Youngstown area.  Youngstowners have been getting knocked down for almost 30 years since our industrial base has eroded, but we always seem to come through for local charities. I’m sure Kelly will be back out in the public very soon, visiting kids in the hospital, signing autographs and making appearance’s for charities just as he has in the past. Powerful and humble, the sign of a true champion. Congratulations Kelly, You… ARE The Man!

Also on Saturday, the Ancient Accepted Scottish Rite for the Valley of Youngstown held it’s annual Teddy Bear Walk to raise money for  the Masonic Children’s Learning Center for Dyslexic children, based in Youngstown. I have yet to hear the final numbers, but judging by previous years, I’m sure that this walk was one of the most successful in the state as well as the country. Last year our valley raised more money than any other in the state. Very impressive.

Last but not least, the event in which I was involved, the 30th annual Boardman Rotary Oktoberfest, was held in Boardman Park. The festival, which is always held the fourth Sunday after Labor Day weekend, hosted more than 220 arts and crafts vendors, 20 commercial vendor’s, 25 food vendors and more than 20 non-profit vendors. In addition to the vendors, there was a Civil War reenactment, a hot air balloon, pony rides and a bounce around for the kids. The weather was great for the event which helped draw more than 20 thousand people. The Rotary Club of Boardman donates 100% of the proceeds from this event to local and international charities.

Why is it that in the Youngstown area, where unemployment and poverty are high, so many people are willing to give of their time, talent and money? My answer is simple - in this area, like many other towns, we take care of our own.

I have been working with Nik on the Puzzle of Hope (or POH as we call it…) for several months now and have watched it evolve from a passing dream to an almost reality. As the idea for POH evolved over time so did the idea of creating this blog. Nik asked if I would consider becoming a guest blogger as he knows the life I have lived for several years now - ever since the day my son Jackson was diagnosed with autism spectrum disorder. (ASD)
One of the reasons I am so passionate about sharing our family’s autism story stems from one of the first discussions we ever had with his Pediatric Developmental Specialist. At the time, you are reeling from learning your child has a disorder with no known cause or cure and you immediately try to imagine the future. Dr. Khanijou summed it up for us this way — Jackson will go to college, probably majoring in computer science or neurosurgery; he will get married, have children; and he will have one or two good friends. He will also need some form of intervention for most of his life - whether pharmaceutical or psychological. So that was it - there was hope and our family could live with this!
So now Jackson is eleven (as of yesterday - Happy Birthday Baby…) and he is firmly entrenched in his Asperger’s. He gets good grades in school (with and IEP and various intervention services), has several friends (including the seven boys who slept at our house on Saturday for his birthday), a few girls who like him (he is pretty darn cute…) and loves sports (an added bonus for someone on the spectrum). He also has a serious case of Obsessive Compulsive Disorder, related to his Asperger’s, that is both exasperating and hilarious! In a nutshell - he is a somewhat typical kid!
I hope my posts will work to enlighten those who know nothing of ASD, those who have only recently received the diagnosis and feel hopeless, and those who have lived with it for years and can appreciate the stories I will tell.
Bottom line - we found hope in autism. In fact, our autism story just told me he finished all of Wikipedia and needs to start over again…what a beautiful mind…

Hello to everyone out there in the web blog world or whatever we are calling it. This is my first post!  I am hoping to generate some interest (and advertising revenue) to help support charities that are near and dear to my heart.  I have or should I say “we” have been working on this great web site to benefit charity for several months now. The soon to come… puzzleofhope.org. Today I saw this web blog portion for the first time and must admit I am very happy with the look so far. That is to say everything except for my big fat forehead splashed on the front page of the site. The photographer must have taken 2000 shots and they decided that this one was the best? The smile is not fake, nor do I have veneer’s on my teeth, but the forehead is unbearable. The other thing those creative people must not realize is that I have to look at this thing everyday not only in the mirror, but when I sign onto this blog site. So to that creative trio down there at Keynote Media: How about a thumbnail size picture with a link to enlarge so that anyone who is daring enough to see the bigger, shinier shot can do so with caution!