~ Blue Jeans and Lace ~

Epilepsy Foundation Of Michigan Rocks

2013-03-01T17:28:00.002-05:00

Of all the big named disability centered organizations that I have tried to use to help my son, one stands out because I know the money is used in a way that gets down to the people who need it most.

I have something I complain a lot about behind closed doors (and sometimes in front of open ones) because it is just so wrong. I don't understand how the big named "charity" groups can take so much money from people who give to them in someone's name yet not give back in a noticeable, real way to the people who it is intended to help.

The Epilepsy Foundation of Michigan is a group I have worked with for about a year. I have personally seen their work reach the everyday people. They help people understand, treat, and educate about epilepsy. Their programs help people deal with the world as a whole - from doctors to educators. The conference they hold each year, and camps for the kids are invaluable to those who attend.

There is a community or family feel about the local group. I know several of the folks by name thanks to the way they reach out. Russ is one of those hard working people. I was able to meet him face to face and watch him work at last year's conference. It was hectic in the same fashion as all such things are, but he took time to talk to people, and note their concerns or thoughts. Russ is just one example of the good folks that make it all work out.

One of the most helpful programs I have used is the Learn & Share Conference Calls. You sign up, call in at the time and date, and you get chance to learn about variety of topics from adaptive technologies to medications to surgery. It is free, educational, and it gets down to us everyday people.

They offer many helpful programs so make sure you check out their site for yourself. Here is their Facebook page as well. The head organization is one I don't know as well but I recommend you check them out as well because there is a lot of good information available on all these sites.

Now, to support them and to raise awareness, my family and friends are supporting their biggest fundraising event in our local area. On June 8, 2013, we will be taking part of the Summer Stroll For Epilepsy at the Detroit Zoo. If you would like to help, you can find our team, "Walking With Rowan" here, and the main page for further information here. We could really use your help. If you can't sponsor one of our walkers, maybe you can share the information or ask your very nice employer to sponsor us. We would be forever grateful.

(or you can simply click the donation button on the blog and tell me what it is for and will put it in to the donation page on the site myself)

Go Team Walking With Rowan!!!

Is Normal Harmful?

2013-02-09T17:49:00.002-05:00

I recently read another blogger's take on the world's view of "normal" and "not normal." I have read other people talk about the pros and cons of labels. I want to share my thoughts on the whole thing.

Labels have their uses. If you have a label, you are able to use it to get services, to get ideas on treatments, and basically, to know what to expect at least in an indirect way. Labels can be misused by people in authority, may cause a person to be held back, or be the wrong label. It must be balanced.

What I really want to talk about is normal. Often folks say there is no normal, and they are right but only to a point. Maybe if we said "Typical" instead people would get it better.

When you are raising a child, you know they follow a "typical" path. If they don't, you worry and start asking questions. The doctor will say that there is wiggle room on that typical path but there is also a basic, recognized side path to the main path. Anything beyond that wiggle room is not typical.

Should normal/not normal or typical/not typical guide how people are treated? Yes. And no. The abilities should be recognized and the disabilities need to be acknowledged. You can't set goals for the stars or at the bottom of the ocean for another person.

Ignoring a non typical person's special need doesn't make it go away. Wanting them to be normal, sets them up for failure. While we should help them be as functional as possible, as normal as they are able, we shouldn't expect them to be anything more than they are able to be.

Does that me we don't reach for the stars? Not at all. It means that you set achievable goals and once you get there, reach beyond. You keep doing that until you have gone as close to the stars as you can.

Along that road, you must also allow a person do what they can. You don't hold someone back because of something a doctor said they couldn't do. You keep encouraging them to reach beyond that line. You don't force but encourage. You try hard not to enable a mind set of "I can't because the doctor says..."

The outside world should never assume based on a perceived difference. They shouldn't assume a child will be unruly in a restaurant just because they have a disability. They should also avoid thinking that a child melting down in a store, is a brat because they don't see a disability. There must be a balance.

Therapists are there to help a child reach their personal "normal," not the normal of the rest of the world. If they forget that, remind them. Doctors can tell you the typical path but not the personal path of the patient. Don't let them fool you, they can't and don't know everything.

People who have never dealt with the issues of the non typical person, shouldn't really have a say in the way they function in the world. The can offer help, ask polite questions and try to learn. They should NEVER judge, assume or offer advice when not asked.

Normal is harmful when used improperly to judge people, to set the path of someone, or to claim someone who is not typical is lessor because of it. Never should normal be placed as better or more. One is no less or more disposable than the other. It is very important to hold to the idea that different is not bad and has it's own things to offer the world.

Thoughts?

Selfish Parenting

2013-01-20T09:53:00.001-05:00

Disclaimer: I know it isn't the same for everyone.

Parenting to me is not about me. It is my "job" to care for the lives and feelings of the souls that I parent. It is my role to help them find their way in the world and to guide them into being the best kind of stand up, good human that they can be. It is a life long job for as long as they need me, want me, ect... It is about them.

I enjoyed each stage my children went through... from the fluttery first movements to the trials of teen years and every smile that came a long the way. Even the children that found their way into the family are held with that same wonder and joy... awkward for the young teens. *grin*

So, lately I've noticed a trend of parents, mothers, who think that their parenthood is about them. They are the ones to be served by the child. The child should fill some void in them, the child should be all obeying and a mini-them. Free thought is limited by the desires and morals of the parent.

They think every stretch mark is not a mark of creation but of trials. Every missed party is some moment to fault the child's existence. Milestones are not celebrated from the child's point of view but from how it marks the parent's life. The good in the child is only looked at as being caused by good parenting while the bad is because of the rotten kid. The kids are in the way until it is time to show them off as pretty dolls to gain something.

How did some folks get to be so selfish? Children are not play things. Children are not disposable. Children are not meant to be left to their own devices or to raise themselves, but they are also not meant to be so structured and keep ridged that they can not breathe without instructions. Balance.

I would love to hear your thoughts on this. I guess I just don't understand the parents that can not find the joy in a child or the role they play in making that child into a good adult.

Nothing Is Normal Here: Special Manners 101

2012-08-07T22:45:00.002-04:00

I know you all know this but no two anythings are alike. A speck of dust in the mold can cause a change in the make up. A slight change of the winds, a bad piece of cheese, a slight bend in a strand of DNA and something is different.

"If you have met one child with Autism, then you have met one child with Autism."

You can replace the word "Autism" with any condition or situation and have the same type of meaning. No one deals with anything the same way. Nothing effects people the exact same way.

There are people who have no real understanding of how hurtful and wrong they are when they speak. They fail to listen and understand the individual before they jump in with whatever view of the situation that they have.

Special Manner #108: Your easy may be their hard.

Here is a quick example or two: Your child may have potty trained early or on time, even with a disability but her child may not have the proper sensations or communication to potty train. Maybe you used this method or that one and it worked miracles. Maybe he had used them too but his daughter just couldn't make it work.

If we ask, then we deserve what ever answer you give us. If we don't ask, maybe we have heard it before, tried it before, or have bigger worries. If you must share your thoughts, make sure you understand that every child, person, and situation is different. Include that understanding in your views.

You may have had tubes in your ears, or maybe sat through the procedure with your child. The doctor told you how it is a easy, simple, five minute procedure. You may laugh it off because you know it is routine and a fairly easy thing to get through for most people.

Here's what you may not know or understand. Special needs parents have a few more things to think about that they shouldn't have to explain but often have to. Even routine surgeries can be life and death. Some kids don't deal with being put under well. Some kids stop breathing and need oxygen. Some kids are sensitive and rash out or suffer allergic reactions. Some kids have weak lungs, sensory issues, compromised immune systems, or other complications that makes your routine into something scary and difficult.

You never know what another person truly faces everyday, even if they share bits and pieces. Even typical, normal, everyday people react to, deal with, and suffer differently to things so why is it hard for people to understand that with special needs people?

So what do you do if you are trying to be helpful, to understand, or to be there for someone? You listen and learn about the people you are dealing with. You wait to be asked your thoughts before you give advice. You make it clear you are trying to understand the difficulties they face. You don't judge. Never judge even behind their back - because they will and do hear and feel it. Let them know that you have faith in them and that it will all work out.

Now for a health care, quality of life, 'I would love to hear your thoughts on this' link - Go here to read about a young man who was NOT allowed on to go on the wait list for a new heart because he is autistic.

I'm pretty sure you know what I think but If you all have enough intrest in it, then I will write something up.

Be well all....

Information Processing Needs For Special Needs

2012-08-05T08:33:00.000-04:00

(Check out the Autism Discussion Page which is described as "This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum feel safe, accepted and competent. Although each child is different, with their unique strengths and challenges, their are some common strategies that can strengthen the social, emotion, and cognitive security for most children on the spectrum. Come learn, share, and support.)

Found this on Facebook and want to share it here because it is VERY important information for anyone with Processing Disabilities:

Supporting “Information Processing Needs”!

Given the “information processing” difficulties mentioned in the previous posts it is important to be aware of strategies to help support the child.

1. Give the child time to process. With delayed processing, it is important to give the child 10-15 seconds (or longer) to respond. If you keep repeating the prompt, before processing is completed, they have to start processing all .over. This is very exhausting, and irritating.

2. Let the child pace their performance. We cannot push them faster than their brains can process. If we do, the brain panics and reacts in “fight or flight.” I see this all the time. We are constantly trying to speed these kids up, pushing them faster than they can process.

3. Shorten your words! Provide very short, concrete directions. Use short phrase and sentences with only the main point. Many of the children have auditory processing problems. The longer the sentences, the more words, the more chances the information will get jumbled and difficult to sort out what is important. Only use the important words, getting to the point.

4. Use visuals whenever possible. Demonstrate (model) what you want. Give visual directions. Write out a couple of directions for school topics, instead of verbal directions. Words are fleeting, whereas written instructions are constant and can be easily referenced.

5. Break it down, slow it down. Break tasks down into parts, and give them sequentially. If possible give them a checklist to mark off as they do each step. DO NOT expect them to multitask! Allow them extra time to get it done, but let them finish! It is important to be able to finish one task before going to another.

6. Give the student outlines, laying out the important points so the student can better categorize the information you are giving them. A simple outline will highlight to them what information is important to focus on, and giving them mental “files” for categorizing, organizing, and storing the information.

7. If possible “preview” the learning ahead of time, to give a mental framework of what is being presented. Many of the children have difficulty sorting out the relevant information from the irrelevant. This highlights the areas of importance to help direct their attention, and gives them a frame of reference to organize the information.

8. Allow the child to use their preferred way of communicating what they know. Many of the children have problems writing. If that is the case, let them give verbal answers. If you require them to write, they cannot think about how to write, and what to write about at the same time. If you want to find out what they know, let them pick the medium of expression.

9. Allow the child plenty of breaks. Learning and socializing is extremely taxing. Provide exposure in small portion so that it does not drain their mental energy.

Moments (a story from a song)

2012-07-19T18:22:00.001-04:00

The cool night was drizzle filled and blurry as I watched the man come down the long, lonely road for well over a half hour. At first, I was concerned that he was up to no good. I had seen many a drunk or high hoodlum come by here after dark to cause a bit of a fuss. But you could see in this boy's walk that he wasn't drunk for his walk was too straight. No, he was walking this road for another reason.

My town wasn't the smallest in the county but wasn't the biggest either. We had 8 main streets that ran North South, and 12 that ran the other way. There were many country roads here and there. Our only big bridge is the E Street Bridge. It crossed the widest section of the Franklin Creek, which was actually a small river that dumped into the Ohio a bit further on. Day time found it to be a bit busy but only a few cars crossed at night. The bridge also served as my summer home.

I had a nice little set up here. I had a bed fashioned on pallets that could serve as a couch, tucked under the bridge. A cardboard door helped keep it private and dry. I used solar lights to keep the darkness away. People throw them out all the time. Such waste is my gain, I say. By the entrance stood my good friend Gramma Krackers. Her wiry hair and ready grin was often a comfort when the world got hard to deal with. Too bad I was the only one who heard her jokes.

This night, I had been fishing for my dinner. My fire was kept low so I didn't invite others into my space. I had hoped to have a fried fish feast in just a bit. I set my pole to the side as the man reached the edge of the bridge.

I watched his slow walk, the slump of his shoulders, and the way he just couldn't seem to lift his feet to take another step. It was hard to read his body language but he didn't worry me, so I thought I would see what he was about. I ducked inside for a quick check of things, then I crawled out and followed the man up onto the bridge.

He was dressed in jeans and western work shirt. He had a cap on his head that read EMS in big blue letters. He walked in a bone wearily way that made me think of days gone by. I once carried a load on my mind that kept my shoulders slumped and my feet dragging. I had to quicken my step up a bit to catch up but then I didn't say anything, just walked with him a ways.

We had gotten about half way across that old bridge, when the man turned to me. At first he just looked through me with those troubled eyes. After a heart beat or two, he reached into his pocket and dug out a few coins and a crumpled couple of bills. He reached out his hand without so much as a word. I took what he offered but with a heavy heart. I looked down at it, there in my hand, until he reached out and closed my fingers around it.

"I won't need it and you do," he said before turning on his heel and sure footing it to the railing. He leaned his arms on the cold metal and stared off into the water.

Not stepping any closer, I said to him, "You know, I haven't always this way. I've had my moments."

I told him about sitting here, on the water's edge, with the bright sun on my shoulders. I told him about that long plane ride home from a war that never left my dreams. I told him how I had felt the day my little boy was born. A mile high and bullet proof to be exact. There were moments when I was second to none. Moments when I did what I thought I couldn't do.

I was quiet for a time. I let the warm memories flow through me in a way that no chill could get through. The sounds of night settled in before I added, "Lookin' at me now, you might not know it, but I've had my moments."

He stood there so still. I didn't budge. My feet were sore but nothing like they had been in the days of battle. I knew the look he wore because I had seen it before, felt it before. Deep in his blue eyes came a search for the nerve to push up and over that rail. His heart was wondering if anyone would miss him, if anyone really cared.

I had no words to ease what ever pain he cared except the two that had once been given me. I said them quietly and just once. "I care."

He didn't show that he had heard me. He just stood there looking down and I just stood there with him. I didn't move too close. I didn't move away. I was just there.

Suddenly he broke his silence. With a hitch in his deep voice he said, "You know, I haven't always this way. I've had my moments."

He told me about giving up the wine for a woman who became his wife. How that love, when it was right could see him through. He talked of the time he found a child in a pool and brought her back from where the young should never be. He talked of moments when he did what thought he couldn't do.

That night we talked for hours. From time to time, we would talk again.

"How many times did that old man tell you that story as he stood around this old trash can fire? Can you see it as clearly as I remember that day? You know, he did have his moments. He had moments when he did what he thought he couldn't do. Like that cool night, long ago, when I almost ended it, and he saw me through. He wasn't scared a bit. He just helped me hold on."

The young man had since become a father, a man making his way in the world, doing what he could to do it right. He gathered up the gift his old friend had left for him and turned away from the small gathering of street folks, friends and family that hadn't understood the old man.

He heard Gramma Krackers say, "This is one of those moments. Hold tight to it so it can help you through."

I hope you all enjoyed the story. I hope you leave me a message below. If you all like this stuff, I will do it more often. Let me know....

Find peace in your moments.... it's there... trust me.

Judging The Human Race

2012-06-09T11:45:00.000-04:00

This starts out like it's about Detroit but it's not. It's just the example that started me thinking. I wonder if we replaced the city name and posed the same question to other folks what the reactions would be.

Comment 1: "The 18th most populated city who's median income per family is $31,000 and 32% of city resident's are living below the poverty line. We have to be more compassionate to the less fortunate...We must organize our life and affiliate ourselves with common minds, form our own interest groups through social networking and media... Then talk to our representatives. We got to save our schools and educate our selves. Be frugal. # SAVE DETROIT SAVE THE NATION ## WISH YOU ALL A LOT OF BLESSINGS"

The above was one of about half a dozen positive and compassionate comments out of the 79 total. The question was asked: What do you think it will take to save Detroit? by WDIV Local 4 News on their FaceBook wall. I want to share a few other answers.

*Please note that I am not including names because I am not going to violate private issues... but if you are the person who said it and want credit, tell me down below and I'll make the change*

Comment 2: A nuke.

Comment 3: An army of bulldozers and National Guard.

Comment 4: Considering the IQ of it's citizens and the deluded imbeciles they vote into office... Detroit is beyond saving. Even if Gov could save them from themselves with an EM, Detroit is a bombed out 3rd world cesspool

Comment 5: A natural disaster that takes out Detroit and forces us to start over!

Comment 6: Put up a wall around it, emancipate them, let them become their own country and fend for themselves. But get the water supply away from them first

Comment 7: a big fire....oops forgot they already tried that

Now, I thought maybe the darkness I read was based on the question. That it was just the politicians that the majority of people were hating on. I was hoping that people realized that the political field is responsible for a lot, criminals for some, and that good people still try to do good things in the city and deserve someone to stand up with and for them.

Boy was I wrong.

I went to the story that had been linked to the question. I found it Here. Do you want to know why the world is going to end, why America will never be what it says it's dream is, and why I have lost so much faith in human kind? Read the comments on the article. Yeah, you can read the article too if you want but it's basically fluffy bull that is common in politics these days. The real meat is in the comments, and make sure you read a lot of them so you get a real feel for what's wrong in the world.

* To be clear none of the follow is the opinion or the station or it's people... ect and so on of removing them all from blame. *

For those folks who want just a highlight I will include a few:

Comment 1: (a good one first): What is the purpose of the comment section here? Instead of talking about the issues, it's all about making racist comments. How is it that people are still this ignorant in 2012? Hiding the issues behind a bunch of small-minded throwbacks to the 1930's is what destroyed the city in the first place. I'll bet you that most of the people here making these comments only do it because they think they are posting anonymously. The people that are doing this are exactly what is wrong with the city. Instead of working together to solve problems, they are polarizing whites and blacks against each other. Our city is about 20% of what it once was.

Comment 2: (again, good points): It's a shame someone didn't step in about 30 years ago when the city of Detroit started to fall apart, how can it be saved. Maybe parts of downtown are nice, but go out into the neighborhoods, it looks a war zone. Someone gets killed an people are so used to it and numb from the killings you don't see them cry anymore. The laws are not strong enough for dope dealers, the little children don"t have a chance at life in Detroit. THEY DO WHAT THEY SEE!!!!!!!

Comment 3: The state needs to build a wall around it not try to fix it. With the population make-up it has it would be the only cure. It can't be fixed. Followed by: right on, we are headed that way including the riots in the street, I wonder when the cops will realize it?

Comment 4: (This had 5 likes when I snagged it.) I would be willing to pay higher taxes to build a wall around the city of detoilet and that is about it. There is no fixing it. No one with the money or power to do so cares. Why would they. We all left that place 40 years ago and we left it to rot.(IT HAS JUST LIKE WE ALL KNEW IT WOULD) I mean geez is there one (even one) predominately black city in the USA that is successful. (the answer is no for you detroiters that may not know this) Yet you all think you can take care of it yourselves. We can only go by the track record of detoilet, after all it speaks for itself. Don't worry whitey will take care of you now. (as we have been for your entire existence)... I really love this. Once again detroiters have turned out just as expected.

Comment 5: (8 likes) If the increasing popularity of disparaging Detroiter comments here don't convince you, the new state government should.....White people have finally had enough.

Comment 6: Dig a big ol' hole and shove it in.

Are we having fun yet? 4 more and then I'll let you dig on your own if you're interested. Carry on...

Comment 7: (11 likes and the worst example so far)
Us normal folk call them n1ggers.
We live as far away from them as we can.
We call the police when we spot them in our neighborhoods.
They are monstrously ugly, stupid, and genetically predisposed to committing crimes.

Comment 8:

I saw a documentary a couple weeks back called 'Deforce' which consisted of a whole bunch of Detroiters blaming all of their problems on White people. It was a lot like this site but without the benefit of being able to ridicule them into a negrocious rage.
I really hope they stand their ground so we can sit and watch them kill each other over bounced paychecks. It will be a nice change of pace from watching them kill each other over sunglasses. Followed by: Gotta get the National Gaurd to block off the city first so none of it spills over in normal people's neighborhoods first.

Comment 9: Detroit has been morally bankrupt for decades. Followed by: How can you say that? Just because most people there have babies out of wedlock, get their sexual advise from rappers, and call each other n*gga and muthaf*cka. Aren't they just morally outstanding citizens?

Comment 10: Get yer lootin' clothes on . .

My Point:

Here's the problem as I see it: People are too caught up in blaming and stereotyping that they aren't seeing what is really going on. The people in charge are using it against us all.

We all want our "rights" but many people think they can deny the rights of others based on what they think is morally correct.

We all want to have our basic needs met with a little extra thrown in but many want to cut the ways some people get help. People are criticized and limited in even their ways of trying to get through. Last summer there was a family that went world wide because it struggled to have a garden.

We live in our day to day lives and many people have forgotten to reach out and help others. People judge the actions or inaction of others without thinking of the reasons behind the situation.

I was asked recently why the private citizens of Detroit don't tear down the empty houses themselves or mow all of the tall grass. The commentators said it was the duty and responsibility of the people who live in the neighborhoods. While I agree to a point, people often forget that it takes money to buy gas, you have to be physically able, and the people who are left in the hard hit areas are lacking in the basics let alone the extras.

We are all in this together but to expect a few to do the work of many without help is just stupid.

It is also stupid to make the worlds problems about race or sexual orientation. Religion can be a bigger issue when taken to extremes then both of the other things combined. People need to respect each other no matter what ways they differ.

Up Next: I'm going to try to show everyone that we are not all bad and I'm going to use Detroit as an example. I have sent out requests to a few of the local Good Guys to let me showcase their work a bit. I want to see the rays of light that this City contains. Then I want everyone to see it in their own corner of the world.

I will get them up and running as soon as possible.

Lights Out For Detroit

2012-05-29T23:32:00.001-04:00

UPDATE: (6-17-2012) I have had to go through and fix or delete a lot of my links in this article. Many or all of the Fox 2 links didn't work. They are now updated, changed or another story found to make the point. I also added a bit here and there so it's worth a second look.

Charlie LeDuff "9 shot in 90 minutes. Detroit on a Friday night. Where's the gun squad in DPD? They got rid of it."

(Viewer Comment) ..in Detroit you have to be your own Fire Department, Police, and Ambulance Service because those Services are a scarcity and when crime is increasing...man, no help or services for the "Hood."

Lights out: If you live in the neighborhoods of Detroit that has seen many people leave, the lights will be going dark. For some that doesn't mean much since the lights didn't work anyway, but for others it means one more layer of protection is removed.

There are 88,000 street lights. 40% are already broken. The City says that it will save money by making the number of working lights 46,000. And who gets to keep the lights? The Downtown area because that's where the money is made, the more densely populated areas because they must be more worthy, and um..... It comes down to this, City officials know that they cannot force people to move from “distressed areas”, so they are going to encourage them to leave by cutting off services.

Now that isn't the only change:

~ The police (and their supporters) have started many "new" programs to combat crime. The police stations are now closed for more of the day than they are open. They are open 8 hours a day. They have this new and wonderful (not) system called "Virtual Precincts" that will let you record your crime complaint and someone will get back to you.

They can't come out for any crime that doesn't involve an 'in your face, right now threat', or a death. Of course, they kind of didn't really show up before but that's another rant. Read this if you are interested. They are very under staffed, under supplied and under funded.

The pastors are going to walk the streets to get in touch with the common folks and try to head off crime. The police are supposed to stop people with broken windows are tail lights that are out in order to stop bigger crimes from happening. scratches head um... I wish them luck with that.

A must see link is this one that shows the crime rate "as it's happening" but also the one that talks about how those numbers are only part of the story. (here) The numbers are worse then they appear because many people just don't call the police anymore because they know it won't amount to much, the police classify crimes to suit their purposes (an almost stolen car becomes a vandalism), and because sometimes the dead just can't stand up to be counted.

~ The good old days, and now:

Old days: Detroit knew a middle/ working class population that was over 1,800,000 in 1950

And Now: In 2010 the population was down to 713,777 and shrinking. 53% of children live below the poverty line.

Old days: Detroit was the capital of industry.

Now days: 47% of the population is functionally illiterate. They can get by but that's about it.

Here is a link to the most dangerous cities in America with some great numbers to put it in perspective. (June 10, 2012 the homicide number was 149, 4 more than the total in 2011)

~ Other City Services like the fire department and the EMS are suffering. The fire department was told to let houses burn, have a gifted fire engine that is hidden away somewhere, and not near enough people to man the hoses. The EMS is on the chopping block, doesn't have the life saving equipment it needs, and will openly tell you that you are in a city that will let you die. (watch that here) The empty lots get mowed once a year and that's if you are lucky. awww but yet we still pay taxes to keep our service running well.

On the Streets of Detroit, the Mob Rules: MyFoxDETROIT.com

My Point: It is the everyday people who suffer. It isn't who we voted for (because I didn't vote these folks in), it isn't my children causing the trouble, I am not a drug dealer or thief, and I do the best that I can with what I have to work with. I love hearing how we should just move, leave the city, and let it die. Here's the rub, not everyone can just move. There is money issues, work issues, and so much more. And besides, why should we have to run?

The city demands our taxes or they will take our homes but we can't demand that they mow their lawns, pay their light bill, and keep our emergency safety departments in working order?

And if Detroit can fall, what makes anyone think that the rest of America is immune? Have you all looked at Chicago lately? Not good.

On the governmental level there needs to be changes. No, not a party change but a "responsible to your people" change. The party line crap is part of the reason no movement has been made on all levels, from city to country. We need people in office that will do their job, do it right, and do it in a way that will safe the basic fabric of America and it's towns and cities.

On the street level, we need to get together and fix what we can. We need to watch out for each other. We need to do clean up our streets. I take care of three lots that I don't own. I help my neighbor. I watch out for the kids walking and playing in my area. I make sure my kids do not grow up to be gangsters and thieves.

We are all in this together. This city, this state, this country. We need to get back to basics and pull together.

Other Sources and links:

Half of Detroit's Streetlights May Go Dark

I am Detroit

Who You Gonna Call?

(that last one is from the UK.... nice. I cringe when we hit the national news but now we are hitting the other side of the pond. Wonderful.)

There are a few of my posts that go along with this:

The Updated American Revolution

Dying to be Poor

187

And

The Poor Side Of The Hood

Don't forget to hit up the tip jar to help the family out. It's up there near the top of the page. Thank You very much.

Disability Doesn't Mean An Easier Life

2012-05-29T15:09:00.006-04:00

♥ If my heart is broken, I will remember to fill it with love until it is mended. If my lungs cause me to breathe a little slower then I will take the moments to enjoy the world a little more. If I have to see parts of me go, to help me stay, than I won't mourn them but will use the extra time to do the best I can, to be the best me that I can be, for as long as I can be. I will love, I will smile, I will Live. ♥

Several times in the recent past, I have had the cosmic reminder that we are living a short life. We don't have forever to do it right, to love, to enjoy the company of those we care about. But then I went to the doctor. Now I got to thinking about things from "how to cope" side of illness. I have been caregiver for so long that I had forgotten the other side of it.

Have you seen this?: The following passage is being sent around on the social media sites.

"Hard to explain to someone who has no clue, or who doesn't believe you. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. When you and your doctors don't know when it will be better it is impossible to explain it. You or someone you know has an invisible illness - (Pancreatitis, Crohn's, PTSD, Anxiety, Bipolar, Depression, Diabetes, LUPUS, Fibromyalgia, MS, lyme, ME, Arthritis, Cancer, Heart Disease, Epilepsy, ADHD, Autism, M.D. Evan Syndrome etc.) Never judge what you don't understand and try to be supportive instead."

It shows that there is enough cause for people to be concerned that others don't understand what being disabled or chronically ill is about. Because of how many times this has crossed my news feed, I know that many people are on the coping side of an illness.

Misconceptions and Realities: One of the things that came to mind when I was thinking about what life means when you are battling something, is that there isn't really a break when you are sick. It doesn't make life better or easier being sick. There is no glamor in it. There is no money in it. There is no special prize for the pain, the appointments, and the unknowns.

Your day is just as long even if you can't work because you still have the day to day responsibilities. Dishes still need to be washed, appointments need to be gone to, paperwork and bills don't care if your chest hurts or that you feel like tossing the lunch you didn't even eat.

If you are a parent, you don't stop parenting because you don't feel good. If you are the parent of special needs kids, you often put everyone else first, forgetting to let yourself heal. Did you ever say "I don't have time to be sick?"

I have heard so many people say that those on social security are just after a free ride. There is nothing easy or free about it. You have to make it on less money while adding extra bills of medication, doctors, and treatments. You still have to eat, pay the light bill, and put shoes on the kid's feet.

Not every sick or disabled person gets friends who throw them a spaghetti dinner, or has a foundation racing for a cure, or even looks "sick." Some are well put together high function people on most days but on others can barely get out of bed.

My Point: I don't have a planned point that started this blog. I was just thinking about my life and what one more doctor appointment means to it. How much more an extra test strains life. And that got me thinking about other people have judged or expressed being judge.

I don't understand why so many people look at others and try to put them into some group with out understanding that life is different for everyone, that we all have our battles (both seen and unseen), and that while there are bad in every group, it doesn't make the group bad.

I wonder if you have ever been judged unfairly and what you did about it.

Be nice to each other!

Please: Help out if you can by hitting up the "tip jar" that is at the top right of the page. Thank you.

The Autistic Rose

2012-05-25T08:28:00.000-04:00

Meagan Rose has had a rose bush that we rescued from an abandoned house. It was small then and that was three summers ago. It hasn't ever had roses. It grew a bit last year but not much.

This year though... it took off and Meagan has been watching it every day. She watched the little promise of a bud, the little tiny changes each day, the little bits of color come through and yesterday she got to see the first bloom. aww, if only you could have seen the simple delight in that - amazing.

That is so much like what the parent of an Autistic child does. We hold that hope, we watch and take pleasure in the little growths, and we explode with joy at each bloom.

Meagan teaches her mommy sometimes.

Meet: Edward R. Cox

2012-05-21T14:25:00.001-04:00

If you saw my recent post on the "Land Of Dreams" video, than you have met my friend Edward Cox. He and another actor, Gideon Hodge, played a ground breaking part as a gay couple riding the street car in New Orleans. I was able to talk with him about the project as well as find out a bit more about this creative man.

He and Gideon have had a rise in interviews and discussions because of the unique nature of their part in the video. Please check them out if you get a chance.

~ OutSmart Magazine, click Here for a great look at the story.

~ The U.S. Constitional Free Press has and article Here, that I'm not sure how I feel about it. It focuses on a couple of interesting points including that New Orleans is featured in the video but is listed as one of America's most dangerous cities. And how *cough* far from traditional American values the add is. Right. I have a different view of America then they do I guess. Make sure to read the other post to see my view of what America should be.

Hmmm... I wonder how Detroit missed the cut on that whole dangerous thing.

There are others out there so keep an eye out for them. You can search "Land of Dreams Tourism Commercial" to find all the different videos the campaign has released so far.

Edward Cox: This marvelous man is artistic in so many ways. He is a designer of sets, costumes, and all things magical. He acts in many different types of roles. And he is a man who speaks and stands for Human Kind.

He is a proud native New Orleanian and Actors Equity member. He has almost 50 years in entertainment. From filming lots of movies, doing lots of theater and making tons of gorgeous stuff, he has made his mark on the industry.

He is a professional Theatrical Director, Author, Designer, a proud member of Actor's Equity with a career that started before salt water, as he says with a smile. He also has many Mardi Gras designs including costumes, floats and much more.

He also lays claim to the classic screen vixen Paulette Goddard as a cousin of his. The Family Von Trapp singers, Of The Sound of Music fame, are blood-line relatives as well!

He is definitely more than meets the eye. He is open, gregarious, and enjoys having a great time. While work brings satisfaction and pride, he always adds that laughter and fun are a must. He is happily partnered for over 18 years and married to the love of his life, Vatican Lokey.

Find his professional information by following the links:

IMDb http://www.imdb.me/edwardrcox

Stage Click http://www.stageclick.com/person/2973.aspx
* This link has a lot of great information and I highly suggest it. *

Agency Pro Public Talent Portfolio http://www.fameagency.com/EdwardRCox

Actors Access http://resumes.actorsaccess.com/edwardrcox

Simply Stunning Designs - NOLA is a great place to look at (and learn how to purchase) some of Edward's wonderful creations. I Love visiting this page when it is at the high of activity.

www.facebook.com/SimplyStunningDesignsNOLA

Twitter! @GayGuyInAd

Gideon Hodge: The other actor in the video is Gideon Hodge. He was cast as the role of partner after Edward's own partner, Vatican was offered the part but had to turn it down due to a scheduling conflict that put him in New York.

Edward says, "To be honest, as far as I know he is straight, VERY open minded and open hearted and I adore him no matter what!

He and Gideon met on the set of "Land Of Dreams." Out of the other actors who auditioned for the role, Gideon was chosen to replace Vatican, who was cast alongside Edward since they are an actual married couple.

Gideon and Edward instantly gravitated to each another the moment we met. They became friends from the start. Edward says that he and Gideon have many things in common not the least of which is the love of acting onstage. This includes pantomime, dance and commedia del arte, and so much more.

They totally clicked while getting to know one another excitedly over breakfast before the shoot, which was great for the commercial. They filmed their segment in the St. Charles Avenue streetcar in New Orleans for about an hour and a half or so. With each take they were given direction verbally throughout, since it was silent footage to be used, and numerous setups and actions were filmed.

Edward shares a touching moment that I find speaks of why their part in the video is so note worthy to those who watch it. He describe to me the fact that he "held back" as to not make Gideon uncomfortable, but that really it wasn't necessary.

"Gideon is so wonderful a person that he 'went for it all' and I did so as well, which seems to have worked out fine. I even recall giving him a kiss on his head at one point and it felt right and natural for the moment. No bells and whistles and horns screaming "Look at us! We're GAY!"... just a Gay couple, two same sex male partners, relaxing and enjoying a streetcar ride together just like anyone else."

Gideon is a man of many talents. He acts and is soon releasing a novel called Lilith's Redemption based upon the myth of Lilith, Adam's first wife. He is the executive director at Society for Theatrical and Regional Art.

Edward's Thoughts: A gay couple being presented in this historic first ever tourism campaign by and for the Untied States is being touted as "Groundbreaking." Gideon and Edward are being called "The Faces of Gay America to the World" in some of the Gay media. Edward says that it is most humbling and a little scary too! He is so proud that New Orleans got 3 segments in this commercial series that will appear in over 50 countries. He is prouder still to represent the Gay Community through New Orleans.

"I pray that this is a positive step forward for tolerance and understanding and acceptance not just across the world, but here in America where we truly need it, for all races, genders and especially for the LGBT community."

Check out the first post on "Land of Dreams" here.

A Moment In Mom's Heart.

2012-05-20T22:47:00.001-04:00

The following is a rewrite of my side of a status and follow up comments I made on Facebook. I'm sharing it here because I think it says a lot about Rowan, about how I feel about him, and why I use the terms I do. This was not a planned blog topic but there is a certain part that touches my own heart deeply and I just want to keep it where it's safe. ~

Status: "Yesterday, I made the world prettier. I added the smiles and laughter of my children to it. I planted seeds and transplanted Iris, to add color to the dullness. I cleaned up other people's trash (yes, I grumbled at them.) Last night I held my son as he cried away the pain of the day. And this morning, I woke up and smiled. Today is a mix of work and play but then, isn't most days? ♥ Find your smiles today. ♥"

Added later: Rowan and I are the only ones up and going. We are up because his legs are still achy. I was going out to water the far plants (the ones in direct sun all day) before the sun got to high and hot. Rowan wanted to go too. Despite his pain he lugged three half buckets of water out all the way out there, helped water them, and do a bit of clean up (because the people around us have less respect then they should). We chatted about this and that. He saw a bug and told it to "GO!" off his plant. Amazing morning. Makes the lack of sleep disappear for awhile.

In response to a question asking if he is talking more: He has everyday words that we understand (and people who know how to listen well) that aren't all that clear to other people like NahNah is mommy, A-da is Dada, Caitbug is Cait-er-bug which is Cait's nick name. Go, car, drink, no, sissy (for Meagan) Octonauts (though not clearly, we know what he means), bye, hurt, leg....

Mainly he parrots or talks in syllables and signs for family and people he knows well. He doesn't talk to strangers other than a good bye kind of thing. He tries to "say" combinations like "go now" but *shrug* they don't think he will ever have totally clear speech or the muscle tone to achieve "everyday vocal communication" He looses strength so quickly.

The sometimes word that we get that makes me melt into a pile of goo is "ove ew" while he tries to do the sign for I Love You (his finger control makes sign very hard and then there is that whole lack of tone thing again)

A friend lovingly replied: that I should never forget the power of love. When her son was born they said he wouldn't live, but if by some miracle he did, then he wouldn't achieve anything. And he is now living on his own. We never know what the future holds.

I responded with: Rowan wasn't going to live, he'll be 5 in July. He wasn't going to walk, he runs sometimes. He wasn't going to hold a pencil, he scribbles me shopping lists. He wasn't going to say any word clearly, and I cried when he said "ove ew."

He lets nothing hold him back and I certainly would never add to his burdens. I will trumpet his success. BUT I have to keep some realistic points in mind when I publicly talk about him to family, friends, and others because while I see how far he's come, others don't understand how hard he had to work to make it happen.

They judge what he doesn't say, doesn't do on his own, or how he isn't like other kids. They see spoiled, babied, and lazy. They have never tried to understand the seizures and how they set him down for days on end, or how just eating half a slice of pizza tires him out, or how the heat can send him to the hospital. So when I get asked a question I tend (by habit?) to explain the why and the realistic noises that the doctors, therapists, and other caregivers make. (defense maybe?) If we know what others expect of him and we see him go past it, then they (those who don't understand or who doubt) know what I, what we, already know - that he is perfect just being Rowan.

One wonderful response: I received love and support from friends after that but I wanted to share one specific one. You may know here from some responses she has left on other posts. Sometimes I think she says what I mean far better than I do. *smile*

She said: "I understand quite a bit.. with my niece we lived through the hurtful things that doctors would say about her and even put up with "well meaning" family and friends who said the wrong things and we learned to survive the harshness of being judged and misunderstood. We learned that not all people are the classic patient in a text book and we learned to pick the right words when talking with professionals that had no clue what it was like to stay up all night with a sick child that couldn't speak and tell you what hurt. I do know what it's like being scared of the unknown and finding precious memories in the most mundane things that others would over look.. a uneventful day was a blessing to us.... "

My Point: It isn't easy to understand what really goes on in someone's struggles. I understand that dealing with a chronically ill child is hard, but even with all of my experiences, I can't say how it would be to have a child suffer through cancer or blindness.

But the understanding that I do have, helps me be more mindful of my reactions and treatments of others. I use what I deal with to know what I can do to ease the burden of another, even if it is simply knowing that a sleepless night means we are a little more raw, that therapy can be as draining for the caregiver as it is the patient, or that an hour that the family is all asleep means that mom can just be and that is worth gold prices and then some.

I judge less, I offer a helping hand instead of criticism, I talk to the child others won't look at. I do it because I know what it's like to be talked about cruelly, to have my children left out, and to be forgotten by those I thought I could count on. I also know what it is like to have friends and strangers pull together to help me, to have someone find joy in Rowan's smile even when he ignored them, and for someone to say that my words helped them through.

Just be there, try to understand, ask what is needed, take a minute to try and see it from there side. And if you must judge, do it somewhere else because no one needs that around them when they are battling ... something.

Be Nice to each other.

"Land Of Dreams:" For Everyone

2012-05-14T14:41:00.001-04:00

As you watched the video above, what did you notice most? Was it the beautiful photography? Or Maybe it was the music or the song that struck you? Was it the races of the people, their faiths, their sexual preference, their cultures, or their income? No, really, I want to know. Please leave your answers in the comment section below.

A Bit Of Background: The company which partners with the United States Government to operate DiscoverAmerica.com (The U.S.'s official travel and tourism website), BrandUSA, released a new ad campaign titled "Land of Dreams." This commercial is being shown world wide in countries like United Kingdom, Japan and Canada. Their aim is at attracting international tourists to the United States.

The entire crew were a rainbow of races and types from across the globe, so it made total sense that this international talent pool behind the filming and creating of these spots, were so highly capable of creating such a blending of people and types in the entire commercial series. As you watched there were faces of every race, many cultures even in the instruments that were used, and there was even examples of different family and couple styles. An excellent example of the melting pot that America was founded on.

BUT.......

You knew there was a but so don't look so shocked....

At around the 1:15 point in the video there is a couple that is making people talk. What makes them so special? Americans haven't always reached out to couples like them and while they have come far, they are still battling to be considered a "normal" part of our culture. The issues facing them are a hot bed topic in many state and federal elections. They are a beautiful gay couple enjoying a ride on the street car.

WHY?

Why is it so hard for differences to be accepted. In today's modern world, you would expect more educated opinions about ... everything.

-To balance a budget only spend what you bring in. Simple? Not for a government.

-If you want people to stay out of your business then stay out of theirs. This includes gun cases, bedrooms of consenting adults, a woman's uterus..... ect...

-Religion and Politics make for poor bedfellows. A good case in point would be the up roar against gay marriage. The LAW surrounding marriage should be about protecting the rights of the couple. The MORALITIES of the marriage should be up to the couples belief system.

My Point:

Poor, white, black, middle class, Catholic, Pagan, city, country, foreign, healthy or disabled - it shouldn't matter. It's about Human Rights. It's about freedoms to be looked at with out judgement. It is about the freedom to live your life by your morals.

America is supposed to be everything that video showed. A chance for anyone to be everything that they need and want to be. To have an equal chance to be fed, housed, and loved. Race, Sexual orientation, bank account, religion - none of that should matter.

We are all in this together and I am so happy to see and hear of the progress that is being made to embrace that. But I am also worried about the areas where no progress or even reverse progress is being made.

I am very proud to call an actor in that video a friend. I am very proud to see America showing acceptance. And I hope we can all be inspired by each other.

To Learn more about the couple, please click here.

"The handsome gentleman with the beard is my husband of 20 years, multiple award-winning actor & director/designer Edward R. Cox. I'm very, very proud of him for being involved in this commercial!"

posted by VaticanLokey on 21-May-2012 11:09

On the DNA website (click Here)

To read a Forbes take on the campaign click Here.

Search "Land of Dreams Tourism Commercial" to find all the different videos the campaign has released so far.

Resources, Apps Reviews, Shares, and Free Stuff

2012-05-02T08:38:00.003-04:00

***I will be updating this often so try to check back. Included here will be resources for help with Special Needs and Every Day Needs, App links and reviews, and links to free stuff that I find a long the way. Please share your own in the comments or tell me of any issues you have. Thanks All and I hope you find something you can use.***

Syllable Counting: This link leads you to a video about the app. and the information about cost and where to get it. I have not used it yet but when I can a chance to, I will tell you what I think.

A4cwsn: This is a great resource for many reasons. There are links to Apps, there are resources and ways to earn an iPad and other special needs items, and there is a great Face Book community to join here.

Freecycle: Need baby items? Short on food? Have clothes you grew out of... or dieted out of? Toddler done with his baby bed? Here is a great resource to give away your stuff or fill a need. You will be helping to keep good stuff from going to a junk heap and the Earth will thank you. It is easy to use and wide spread.

What Makes It Harder To Be Disabled - Media & Money

2012-04-29T13:21:00.001-04:00

Ready to get mad with me? Read this article on Autism. I'll wait while you read. The comments are worth a look as well.

***Sips tea, counts to 500, sips more tea*** Back now?

So what did you think? Do articles like that help or hurt the cause, the people who care give, or the people with the disability?

If you didn't read it, I'll summarize the New York Post article in my own words. (beware of my own side comments because I was just sooooooo pleased with what it said)

~~ Autism is a fad. We want to label everything we don't understand or find bothersome in a false sense of control. Just yesterday, Autism was like really rare and now everyone has it... and more than everyone in Korea has it.

Parents are freaking out and buying into quack doctors and conspiracy theories. They are even refusing to give their kids the life saving shots the government demands all kids to have in their best interests. They are also blaming silly things like environmental toxins for the strange but false rise in numbers.

They article writer seems to think, though doesn't provide any references, that the rise in numbers is mostly due to over diagnosing. It can also be explained by 1. people stare less when an autistic kid is in full meltdown in the video isle of Kmart. 2. The label is now a spectrum to include milder cases 3. Doctors and special education folks know more about it and are using it to cover their backsides more. 4. Aspergers really made the numbers jump when the DSM was changed... 16 years ago. 5. And MOST IMPORTANT is that parents want special education services for their kids because they will be secluded in smaller class sizes and get more attention.

Behavior problems that look like autism, act like autism, and restrict like autism deserve attention but aren't autism. As many as half of the labeled kids are mislabeled if we looked really close. BUT those mislabeled issues still need to be fixed, don't get them wrong, as they are a cry for help.

The Internet and advocacy folks have made awareness higher causing 4 good things and 2 bad. We'll do this as a game and let you figure out what they think is good: missed cases found, over diagnosis, more and improved care and education, cured cases that were never autistic to begin with, reduced pointing in restaurants, and increased research.

Science isn't being used to research the true numbers in the general population. Autism isn't a neurological disorder or a developmental issue but a psychological one. Glad they had their facts straight, aren't we?

This lovely bit of B.S. was brought to you by one of the over educated, under lived people who rewrote the DSM IV to tighten the classification of Autism, while not leaving a diagnosis for those people and children that would fall off the new autism that isn't a spectrum. ~~

How Ya feelin'? Need a minute? I'll wait. ***sips tea***

Now go read this article about a full range of issues that face a woman trying to get help for her illness. She has faced misdiagnosis, money issues, lack of available services and testing, disbelief in the illness being "real," the ever famous diagnosis of depression (been there myself which is just depressing), and it all comes down to money (and lack of it.)

Media: The media does what it wants to get it's own agenda passed. Sometimes it is to sell a story to the public in a bigger better way then the other folks. Sometimes they lie, I mean bend the truth, to sell the story to suit their own leans. And other times they are catering to a certain cause or purpose. And sometimes they are bought.

It's their right to report as they see it but the real problem is that people read or watch it and take it at face value. My mother in law reading the above mentioned article wouldn't weigh what she knows of my children against the "facts" in the article. She would just take the world of the writer because it supports her own narrow knowledge and views. She would, in fact, love the article. There isn't a ready made checks and balance of the facts, so misinformation just leads to increased intolerance and false knowledge.

The media is encouraging people to be mislead, misinformed, and in some cases down right wrong in their facts.

Here is another autism article that is about the proposed changes to the DSM-5 that will be released in May. I won't summarize it (I know you were so looking forward to it) But I will tell you why it is better. The writer says this is what is, this is what changes are coming, here is my sources, these are my thoughts and why. There are not any major false groupings but are traceable facts to support what she is saying. Yes, idiot people could still take her just at her word but she gives a thinking person the tools to see why she is to be trusted or not. And it is balanced for the most part.

Money: Good stuff first: Here is a link to some resources that may help special needs caregivers get an iPad for their patient. No guarantees and remember there is a lot of need but not so much resources available.

I have several issues with things tied to both money and health care (and well being of patients). I don't think prices on medication, services, or supplies related to health care and the quality of life for a patient, should be so high as to be unattainable. I don't think Doctors should (have to) rule out or in something just to get the needed coverage. I think charities that ask for money should be helping the everyday, average patient on a noticeable level. I don't think it should be so hard for the average family to get the things their loved one needs. Most families have no idea were to start and how to stand up for the items they need.

There is more but I see that my tea is empty.

I really don't have a point other than that you should think before taking the media as truth and that we really need to rethink how we treat our young disabled folks. If they are denied the help they need, they will always need help. And seperate "BIG" business from "good" health care.

Now for fun go read this article and watch the videos. Trust me the article is well written and the story worth a smile... and the videos will make you laugh.

Well Being Through Personal Auditing, Spiritual Balance, and God

2012-04-28T18:56:00.004-04:00

Standard Disclaimer: I don't care what faith you practice. If it brings you what you need to live a moral, secure, and happy life, then it is my belief that it is perfect. I do not think anyone can tell anyone else to follow something that isn't in their heart. Please know that your sense of peace makes the world better and I celebrate that. Also Faith and Religion can be used in place of each other in a lot of my usage of them. Now on with the show, I mean, blog.

I talk a lot in my blog about the troubles I see, that touch my life, and ways I see to help them. Rarely do I touch on the thing that really gets me through almost anything. I avoid it because people get uncomfortable talking about faiths and religions that are different from their own. Some folks even walk away from people they called friends because of that difference. I hope we have become friends enough to move past all that.

Personally: I follow a natural faith. I have faith in the good things in life. I have faith in my fellow humans (though that one can be tough at times) I have faith in certain natural cycles and events. I work hard to have faith in Self.

The thing that gets me through the most is a balance. I balance every bad with a good. "His leg hurt him, but he got up anyway" and "The electric went out so the kids and I had a picnic outside" and "His life maybe over but I have some great memories to hold on to."

To every good there may be a bad but it is what you do with it that counts. Learn, grow, and try to do the best you can with what you have and life will work out. You can't wait for God, Magic, or the Government to fix or save you. You must feel, deal, think, plan, and act. LIVE the best life you can and help others do the same.

So how do I reach the calm in the storm? How do I get past the panic, the pain the what every life is up to now? I accept that what is, is. I deal with what ever feelings I feel. I allow myself to feel them, put them in check, and move on. I think about how I can best deal with it and make it through. I plan my next step while remembering that things change. I smile and laugh and hang out with people who understand. I act on my plan. I get through.

God (in whatever way you know him): A higher power works in your life because of your belief in him (them) and the power they give to you can not be used if you aren't involved as well. Church or Service is a great way to connect and join with others.

Prayer works because you are letting go of things and allowing life or God to do whatever comes next. You are letting your faith work through the issue. What a wonderful way to cleanse your soul! Your faith is what makes your faith work.

BUT you still need to act. No matter what you use to get through, you have to do your part to make it work. You can pray all day long to get that job that you need but if you show up late for the interview, you most likely won't get the job.

God is not to blame for the actions or inactions of his children and as long as they remember that, their lives will honor him. Living the best life a father would wish for his children is the greatest gift the child could give the father: Love each other, live honorably, follow the moral teachings while using honest thought to guide your actions.

Counseling: Talking it out with someone can help some folks. It may give them the tools they need to do what they need to get through. I never took comfort in it because of a bad personal experience but I know for others it can be life changing.

Finding the person that matches you, that knows the way you need to be treated but that doesn't encourage you to give in to the bad is the most important step to making it work. Not everyone benefits from the same treatment style.

The second most important thing is your own willingness to work it out. You HAVE to be active and ready to change, deal and be better. No amount of counseling will work (or any other kind of treatment -health, weight, ect) if you don't want it to work or don't do the work it takes.

(Personal) Auditing: There is a practice called Auditing that is a lot like counseling or talking with a life coach. It started as a practice among Scientologists though it is my understanding that it has branched out to some other Practices. I was recently introduced to the concept by a friend. I like it enough to include it here. If you are interested in learning more, there is a blog to check out here.

(As I understand it) Auditing is an activity where a person trained in auditing listens and gives auditing commands to a subject. I take this to be almost like a teacher and student or counselor and patient relationship. There are specific steps to be followed with the final goal of freedom from inner (personal) barriers that free their inner abilities.

As I was researching, there is one testimonial that I really liked. It speaks of balance (one of my favorite things) and how if you put out bad, bad comes back but also that you can save suffering (your own and that of others) just by using your personal power for good. It said that by doing good you take in good. This inner power helps you feel more energized, more creative, more free.

My Thoughts: All of these paths, faiths, tools have a couple of things in common. YOU are going to get the best results when you do something about it in the everyday world. You get out what you put in. You will have bad times in your life but if you deal with them, you can move on.

People are an important part of your world. They will help you and you can help them. We are all in this together. Treat each other with love and respect.

Balance.

You should have faith... in some one, some thing, in yourself.

You are not alone.

Know Peace, Love, and quiet joy.

If you are interested in Auditing then you can contact my trusted and loved friend at :

hparadia@yahoo.com.

Make sure you tell her that you found her through me. Tell her Tammy sent you.

Bully or Hero

2012-04-23T08:19:00.000-04:00

Who will you be? The bully or the hero?

I want to share something I found in my travels. Please check out:

Autism Spectrum Disorder, through my eyes.

The following is from Marian F.............. ♥

"I'm just an ordinary everyday Mammy from Ireland and my son has ADHD but has a lot of autistic tendencies.....he appears to be normal in the physical sense but he finds life and school very hard. He was recently the target of a group of bullies but one person in his class spoke up for him......I wrote this poem from my sons heart. Only a mother knows their childs heart and what they feel:

I wrote this for my son Jack who has recently been bullied but thanks to one amazing young lad in his class who had the courage to stand up to the bullies he has given Jack his life back:

One little voice
Has changed my life
One little voice
Has given me a choice
Shakespeare says
Neither a borrower nor a lender be
I say
Neither be a bully nor bullied be
I’m just a little boy
Why can’t you see
It’s not my fault
I have ADHD
You tease and taunt
I grin and bear
While I cry inside
You pull my hair
I only want to fit in
I want to be accepted
But all you do is leave me
Feeling useless and dejected
One little voice
Has made me smile not mope
He stood up for me
And gave me back some hope
That one little voice
A classmate and a friend
I will always be grateful Thomas
Until the very end

I have since set up a group page called One Voice (on Facebook) but I have left the page to my sons hero Thomas ORowe and another classmate to run the page. They are 12 year old boys with so much wisdom they astound me.....I don't expect you to go onto the page but it's a place where adults and children with problems can talk to one another xxx"

Life Quality Based On Money?

2012-04-22T10:31:00.000-04:00

"Sorry for the delay in responding, we’ve had email access issues.

CSHCS will not cover an ACD. We only cover medical care and treatment. I would contact local agencies in your area, such as Rotary, Lions, Knights of Columbus, etc. You could also contact Apple to see if they have a program that would assist you"

I received the above response to my request for help getting my son either an ACD (Assistance Communication Device) or an iPad to help him communicate from his insurance company. OK, I wasn't really surprised but I was still disappointed and it got me thinking. And when I get to thinking you know that I have to type it out.

As a person there is a simple plan to life. You are a child. You learn as you grow. You become a student. You get a job. You live life as best as you can. You fall in love if you are lucky. You get married (or not.) You have children (or not.) You grow older.

Along the way, life happens. You may be healthy, wealthy, and wise -or not. You may face this mountain and over come. There are elections, wars, peace time marches, stars that rise and fall, books to read, and job promotions to work for.

BUT when you are injured, sick or facing a disability who gets to decide on your life and its quality? And if you are a child who has that power? And if you are a poor child with a disability what will your future hold and in who's hands does it fall?

Here's My Thinking: America is full of programs that are said to help people that are in need. Some American's like that there are safety nets and others think we coddle people too much. I am a balance kind of person. I think we need to help others that want to help themselves and I realize that there are some who abuse the system. I also KNOW that there are some people who are stuck because there are few choices for them. Oh, and those safety nets? The have huge holes in them.

But when it comes to disabled kids, I have a very logical train of thought that seems to be lost on many. It is very, very, very simple math:

Disabled child + Early interventions + medical, therapeutic, and educational needs met = Highest Possible Function + Ability to work = Less Need for services as an adult = Less cost for Tax Payers

I don't understand why insurance companies, both private and public, would put up a fuss about paying for services and supplies that may bring the child (or anyone, for that matter) to a higher functioning place.

If you give a child a voice, then they can communicate, and we can really see what's going on inside their brain. Give a child the brace they need to walk and see how far they run. Why do we have to fight so hard for those little things? Because of money.

Because someone said that a voice for a child should cost thousands of dollars. (see used examples here) Is it the companies, the insurance folks, or what? I don't know or care. My son's braces that will be outgrown in less then a year cost over $2,000. I had to fight to get them. The doctor had to fight to get them. This isn't a luxury item we want but one to help him walk. I'm confused about the priorities of .... everyone... who thinks children shouldn't have that right.

We are under the constant fight to have another 3 months of therapy. I really don't get that one. If a child is becoming a better functioning human than that's good right???? Therapy is a great tool when used consistently.

Money? Is it really all about money? Because if it is then do the math again. Higher function means the child grows into a higher function adult that can do more for themselves and may not need as much or any help from programs that cost other people money. Simple.

If you don't help children when they are young then you risk having to help them in a higher fashion for all of their lives.They may not find work or will always need extra medical care because they didn't get the care as a child. They may cost society more because they end up in jail, homeless shelters, or mental health wards.

Of course there are those who think that if someone is damaged then that falls on their family or better yet they shouldn't have a life at all but I won't waste my keystrokes on them.

Quality life and money? Quality of life is not just "things" but about being able to be the best person that a person can be. It is being as high function as possible, being able to interact with others, it is about being able to find enjoyment in existing.

Money shouldn't be a qualifying factor on who should be able to reach for the stars but it often is. Money can mean better schooling or none at all. It means we eat or not. It means proper care or not.

Bottom Line: I want the best for my children. I don't want them to just survive but to reach for the stars with a smile. I don't want our bank account to be the reason they are stuck here on Earth or ... under it. Rowan should have his voice and I don't understand why an insurance company wouldn't want him to have it if it means he can someday stand on his own.

Thoughts? Make sure you read through the comments and respond as you see fit. There is sure to be interesting things there.

Update: An interesting Right view of Lyme Disease and the medical hurdles faced due to money issues can be found here.

I Hate...

2012-04-17T18:21:00.002-04:00

I hate. A lot. I know I shouldn't. I understand why. I don't think it's right but I'm not sure it's wrong. I think it just is. I'm sure there is a cure or treatment or some wisdom that is meant to make it all better but if I covered my hate would I really be doing the right thing?

I hate Autism. I hate Crohn's. I hate Poverty. I hate Child Abuse. I hate Depression. I hate Cancer. I hate more then I could ever list here but all are things I can't control, can't fix, or feel shouldn't be an issue for an advanced race.

I read recently that we shouldn't use the word Hate to describe how we feel about Autism. It may make someone that deals with Autism feel bad about that part of themselves. Maybe. But I don't hate my child with Autism. I hate the endless therapies that don't always work. I hate the pain that I know my child feels but can't express. I hate that tests. I absolutely despise the on going battles with insurances to get the basic needs of my child met.

My child even hates. My child hates when other kids don't understand. My child hates the pain and tests and putting life on hold to deal with what ever emergency has popped up. My child hates allergies that make chocolate bunnies off limits.

By hating these parts of the whole, we are able to deal with it, feel it toward the label and not the people we have to deal with. If we hate Autism and not the therapist then we can treat them with respect and kindness. By hating the label, we can deal with out feeling and accept the road we are forced to walk. By hating the condition, we can work to fix it, we can love the people who live with it, we are free to accept what is.

I think I hate Ignorance the most. People are ignorant on purpose. They are the folks who could know better, have been taught better, who should be better but choose to stick to their narrow self centered view of life or situations without caring who it hurts.

Not knowing or understanding because you don't know or understand is fine. No one knows everything or understands it all. Being aware and trying to learn is great. When I say Ignorant, I mean those people who have had the lessons, who should understand at least some, who just go on with a closed mind and an open mouth. Judgmental, self serving, know not half of what they think they do types of people are why Hate is hard to over come and deal with. They make every condition harder to accept.

So am I a bad person for accepting the fact that I can Hate? I don't think so. I think it is more about what I do with that hate. I work hard not to hate the person dealing with what I hate. I work hard to raise awareness, look for answers and make what I hate into something less while making People more. Improve the people and their quality of life and the thing you hate can become less of an issue. By fighting for the good parts to rise up and be MORE, then the bad becomes less.

Hate can be destructive, an evil force... or you can use hate in a positive way to do things for the greater good.

May you find a way to find your balance between hate and love. Accept your hate and use it to become more loving. There is a simple truth in that.

What Is The Cost? : a view

2012-03-17T12:35:00.002-04:00

There are three main conditions in my home: 

Poor, Caregiver, and Disabled

These on top of the normal condition: Human

When it all gets tallied up, what is the true cost?

Poverty: "There’s no question that in past 50 years the divorce rate in the U.S. has increased. But what really affects divorce rates? 24/7 Wall St. analyzed a report just released by the Census Bureau that tracks marital events of Americans in 2009. What stood out was the high correlation between poverty and divorce." Article

Caregivers: "More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one." Caregiving in the United States;
National Alliance for Caregiving in collaboration with AARP; November 2009

			"Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI)."

Disability: "Parents of children with special needs often feel isolated, overworked, angry at insurance companies and frustrated at the therapy and appointment schedule which calls for so much WORK with their child- leaving little time for cuddling the child or even just playing together."

"Mental health is how we think, feel, and act as we cope with life. People with disabilities report higher rates of stress and depression than people without disabilities. There are different ways to treat depression. Exercise can be effective for some people. Counseling or medication also might be needed." Article

Human: "For the average person it's a critical point for preventing stress related illnesses from developing and for those already living with health problems it's essential for managing their condition and preventing it from making things worse.

Stress occurs when the demands in our life exceed our ability to cope and it effects our emotional, physical and spiritual health." Article

My Thoughts:

Poverty: When you are struggling to make ends meet there are many areas of your life that get attacked. Marriages are fragile creatures when they are stretched thin by emotions like loss, a sense of failure, hopelessness. Children suffer in many ways from the shorter tempers of their parents to the less health in their meals. You spend so much time trying to make it through that you can easily forget to enjoy life.

Your health takes a backseat to what ever else needs to get done. You have to pay the electric so there is no hope in getting your tooth fixed. You can't get your medicine because it costs $678 for a months supply. The kicker is that if you don't take your medicine, you can't work because your condition will only get worse, and the cycle won't stop. Add to the fact that you may not be eating, may be over tired, drained, and still trying to get what you can, done.

The cost: Don't get me wrong. The poor can be and often are happy (read why here) but they have to work at even that. But there is more noticeably crime among the poor, more preventable death, less personal achievements, less happy homes, and many conditions that don't have to be but that are hard to overcome. People don't always understand that it isn't easy being poor.

Caregivers: A caregiver is working every moment of every day. They don't just do the everyday chores like dishes and balancing the checkbook. Caregivers have appointments to make, calls to return, diapers to change no matter how big that patient, appointments to go to, time to balance, slots too full, education battles, medications to give, treatments to administer, meals to make, discipline to figure out, fears to calm, tears to wipe as well as snot, and a bunch of little things that they have to figure out that most people don't even realize can be an issue. (did you know that the lighting in some stores can cause my son to have seizures while the lighting in other stores are fine?)

It doesn't matter if the disability is autism, Alzheimer's or some other special need, it is work. It is often thankless work. There is a high investment that often gets buried under the social smile caregivers wear. The rewards are the small moments of clear, simple joy that the "patient" creates.

Caregivers are supposed to be in balance with their roll. It is rare, even in their own circles, for someone to say that it is all right to melt down like an autistic child when there has been just one too many emergency moments in the last 24 hours. The offer of surface support is there at times, but not so much the help carrying the load kind.

To be honest, a lot of full time caregivers don't share well. they have a hard time handing over the ones they look after. They know the little details like how to avoid a total meltdown in an autistic child, how to convince the Alzheimer's patient to take their medicine, and which television program makes the cancer patient smile. Controlling? Maybe. But it it's their way of being sure that the person they care for is safe.

The cost: Caregivers get drained out, frustrated, and are stretched to the max. If they have a support system, they are better off because they can get help managing some of the extra stuff piled on. They may love their "job" but it takes a toll. Even the caregivers health can suffer. You often put yourself second and wait too long to get things taken care of. Relationships suffer when you direct your attention to one person so much of the time. You have to share that attention with the others which leaves you even less for your self.

Disability: Some people have disabilities that are in your face obvious. Others have mental disabilities that carry no outward appearances. Some disabilities hide deep inside but cause problems in every area of a person's day to day life. How many times have you wondered why that well looking person has a handicap tag for their car? How many times have you questioned the kid in the stroller? Why does that 20 year old have a cane?

Mentally, people in general get drained and worn out, but when you are facing a disability the toll can be greater and harder to recover from. There are things you worry about that aren't in the "normal" person's thoughts. They worry about to bring to sit on while watching the parade. You worry about if you will have a way to see, if you will need your cooling vest, and if the medication is reactive to the sun.

Money is a constant concern. Balancing wants and needs on a fixed income that often doesn't cover the needs, can be very hard on people at their best. There is paperwork that has to be filled out, doctors to chase, tests to be run, and days when you feel like doing not a darn thing.

The cost: You can often hear the question "Is it depression causing the illness or the illness causing the depression?" among the disability circles. Not all family members and loved ones can stick it out and watch the disabled person battle through it. Isolation can set in and that lonely lost feeling can make it so one doesn't even know why they bother to fight.

My Point:

No one has it perfect but adding just one disaster, one illness, one disability, one loss to the life style and it can forever change how life is lived. Make any struggle into a day to day battle and tempers, budgets, and mental health all suffer. It adds up like a building storm until it lets lose of all it carries. The dam will break but the amount of damage will depend on the support system that is in place, the recovery options and the personal strength.

You can help by not making it worse in words and deed. You can ease the load carried by the caregiver, disabled, or friend in whatever way they need. Bring them a random smile and a bit of comfort. If you don't know what they want or need, ask. You may be surprised by an easy answer of "dinner" or an hours rest.

A Request:

I know that I ask for help with the bills and with Rowan's needs but today I ask for another person. Read my friend's story here and do what you can, even if it is just a retweet or a like. Thanks!

Now to my own needs:

Rowan needs a $60 pair of shoes to go with his new knee high braces. I pick them up in about 3 weeks and could use some help paying for them. I am selling items at CafePress and Zazzle. Please see the links on the side bar -----> over there. I can design something for your cause if you would like, just let me know and I'll see what I can do. Or if you can think of a slogan you would like to see on a shirt.... I only make about 10% on them so if you want to more directly help, I have a Tip Jar over there too. I also have a direct link to the Puzzling Piece iPad Challenge site. (Read more about that here and here)

I appreciate all you do even if it is a simple read, a comment, a little share or help.... Just you being here means a lot. Thank You and find a smile!

Special Manners 101: Dog Seziures Are Not Child Seziures

2012-03-06T21:03:00.001-05:00

"Yes, I know what seizures are because our dog had some before she died"

O-Kay.... Maayyybbbeee I am a little sensitive about the "I know how it is because...." comments I get from folks who have no idea what it is like to wonder IF your child will overcome whatever the issue is, live his life, or be a well rounded adult. But Really? Comparing a scary, choke filled, breath pausing, long lasting seizure of my young child to that of your dog is at the very least insensitive.

And it isn't just that. You name anything and someone is sure to have a stupid comparison that has little the issue at hand. Or people often say things like "but he looks fine now" or "it could have been worse" or other minimizing pat responses.

Parents or caregivers that are mentally, physically, and emotionally invested in the patient already know what they can know about the condition and really wish they knew how to make it all better. There is no simple answer from that article your friend's sister's neighbor's sitter found online on a friend's Facebook page.

Special Manner #108: It hurts caregivers to have their worries and pain reduced by thoughtless (even if well meaning) comments and generalization.

Please remember that no illness or condition is the same and neither are the answers. Be aware of the way you show what understanding you have in a respectful way that doesn't belittle the persons, their condition, or what they and their caregivers go through.

Really, if you haven't felt that helpless feeling that a parent has when holding their child through some horror that they can't fix or ease away, you have no clue. And if you have, then you understand that your pain doesn't make someone else's any more or less painful. It is what it is for each person, personal and deep.

Balance your words on the scale of what you would want to hear or need to hear. Support and understanding is wonderful but don't try to compare or minimize. It's easy to offend someone with open wounds, so if you misstep don't take their hurt and anger as an attack but as a defense. You can make it better by listening, really listening, and then forming a response that shows you really understand their side if not their lives.

It is hard to watch someone you love hurt, struggle, and it is wonderful to see them overcome. The people doing the watching love to share the good but sometimes they need to let out the bad and need someone to hear them. It makes life better for them, it makes them stronger for their battles, and it shows them that someone cares.

How or Why The Poor Are Happy: A View

2012-02-10T20:01:00.000-05:00

"The happiest people aren't the ones who have everything, they're the ones who make the best out of everything they have." Shared by my friend Niki.

So what makes life good for any person? Laughter, love, and the everyday pleasures make the world better no matter what coins are in the bank. But it is hard for anyone to find happy when they are busy making ends meet, landing the next big deal, or dodging what ever scandal is on the horizon. Again, there are universal worries that have nothing really to do with money.

Life is complicated for everyone that makes it complicated. Some things we can not control. We have no way of avoiding the line at the store, the paperwork involved with life and death, and the job that moved out of state. We can not control the weather or the tide but we can control if we bring an umbrella or get off the beach before the tide comes in.

We may not be able to control everything but we can control how we deal with it. Life is life. It has ups and downs and turn-a-rounds. Some times life goes easy and sometimes it acts like it has some serious issues, but it always comes down to how we handle it.

The working class has it a little harder to find the reason to smile when they are struggling. It is a simple fact of life. They still smile. It is actually the reason life is worth fighting for. And for most of them, it is simple things that will do it for them.

Kids are often a reason to smile. Pride in a job well done helps lighten the load. Weddings, birthdays, Sunday church, funerals, friends and family all bring reasons to touch base with the basic easy love of life. Simple quiet moments when the worries sink down like the setting sun aren't often but are golden.

Happiness isn't something we buy like a DVD player. Yeah, money is a bonus. It can make it easier to feel free and light, but it doesn't make a person truly happy. It is simple, simple moments that add up to a deep down contentment with the life we have and doing our best to find balance.

I hear so many people talk about how great it is to rich and how not great it is to be poor. They're right to a point but so not right on the other hand. Yeah, it is very tough to get by some days and really easy others - for rich and poor a like. Honestly though, the poor appreciate the good in a way the rich may not be able to because it is harder to grab.

I don't care what you have in your bank or what you need to do every day, you need to find what ever gets you to that place where life is enough to bring you peace, love, and happiness. You need moments that make you smile... whatever ways you find.

I wish you all you need and most of what you want.

Odd Things Special Needs Parents Encounter #1

2012-02-07T17:30:00.000-05:00

♥ My tears cleanse the wounds I carry but your tears cause my heart to break. My smiles come from your laughter. My pride comes from seeing you stand back up after you fall. My direction is which ever way helps you become all that you can be. I am MOM. ♥

- Trying to explain an 8 year old with the mental age of a 4-5 year old why they can't ride in the cool kid car cart at the store. They really don't understand age limited toys and attractions.

- Trying to explain the things their bodies are going through, long before their mind is ready to deal with it.

- Pain they go through that rips their parents hearts, but the kids still find really stupid things to laugh at, like cartoon fart jokes.

- People who think that you are 1. babying 2. spoiling 3. exaggerating or 4. making stuff up. Really. They are out there and they tend to open their mouth and tell you what they think you are doing to screw things up.

- Random honesty from children that will have you crying... either from laughter or hurt feelings.

- Doctors and therapist who think they know it all about your kid, but don't. They also will contradict each other over the same thing. You should take them at their word but they won't take you at yours.

- Moments when the child seems like an insane alien transplant from some far off planet in the fourth dimension countered by moments when the child seems to be off the chart amazing.

- An odd sensation of never knowing if one should laugh, cry, scream, lecture, rant, chat, refer, or just sit quietly and watch the world go around.

A Review: The Puzzling Piece

2012-02-05T20:02:00.003-05:00

*will be updated as I move through the Challenge*

I have tried to sign Rowan up for several charity type sites that state that they help special needs children get iPads. Some have mixed reviews, poor communication, or a way too long waiting list. I'm sure there are great ones out there, I just haven't found them in the last 4 months. If you know of any, please include them in the comments below because I know that I am not the only one with a need.

Before that, I tried insurance and state run special needs funds. They are at best, under funded and at worst, stupid. Let me explain the stupid part. An iPad runs about $600, give or take depending on make and model. It has many Apps to help kids, people. In Rowan's case it will help in just about every area of life, from speech (Touch Chat) to life skills to hand and eye coordination. It will help his mind, body, and behavior. The traditional communication device runs upward of $1,000 (and more) and does communication - period. It would help Rowan to a point. It would help with communication and that would make him less frustrated so his behavior may change. Insurance will not cover the cheaper, more helpful item. Stupid.

When charities and insurance failed I got to thinking and searching the internet. I was looking for some way to raise funds that left people who gave a sense that they could trust that the money was going exactly where they wanted it to go. I asked my son's therapist and she suggested The Puzzling Piece.

Their Story:

It all started with trying to help the school that was helping their child become more than Autism. Mrs.Winters is raising two sons, the oldest was diagnosed with Autism at age 3. She and her husband started with just one, hand blown, glass puzzle piece to use in an effort to raise funds for their son's school and awareness of an ever increasing condition. Boy, has their efforts paid off and grown.

They give their proceeds to several charities as well as helping families directly. For more go to a news story Here.

How They Help:

They raise money for different Autism charities through selling their product on-line and at events around the country including the Autism Speaks Walks. They donate that money directly. They also have a fund raiser program that people and organizations can do for orders over 25 items. The products are deeply discounted and the organization keeps the difference. And then there is the iPad Challenge that allows parents, teachers and other special needs caregivers to sell 60 special items to "win" an iPad. And as a special touch that I really like, for every 12 sold after the first 60, the challenger is awarded a $100 iTunes gift card that can be used to buy applications.

The Process:

I went to the website and followed the directions by emailing Mrs. Winters. I received a wonderful welcome email. It contained a video with the information and tips on how to make a go of things. It offered a couple of print/sharable items and videos. I then shared my story in a blog that you can read Here which wasn't a suggestion. I printed out a flyer to share with others. I made posts to social networking sites. Now I wait. I will update this section (and the following ones) as I move along in the process.

People who see my information go to the website, finds the tab marked iPad Challenge pieces, and places an order. They put the full name of the challenger on the form where indicated. They get their pieces and the challenger gets a point toward 60.

The Products And Shipping:

My girls have a birthday coming up so I bought them each an item as well as one for Rowan. Quick Note: Make sure you read the descriptions because some items do not come with the chains unless you pay more.

We ordered: The Necklace (a blue puzzle piece with silver shatter paint), The Key Chain (a heavy puzzle piece on a strong chain), Smiling Sam (a smile on a chain), and The Heart Of Gold (is what it sounds like with out the gold part)

Ordering, payment, and shipping was easy through PayPal and we received our order in good time.

The items are actually bigger and heavier then they look in the pictures except Sam. The girls loved theirs, and all seem to be well made and strong. I think it is worth the cost. Remember you are not just buying the product but also the portion of the iPad.

Pros:

-I love that the "burden" doesn't fall on any one person. Your family and friends can all do as little or as much as they can. There is even a little side bit that says that even if someone doesn't want to buy a piece they can still donate. Every $20 donated in the challenger's name is a point even if no jewelry is bought.

Update from Mrs. Winters: "One thing (we do is) when people send me 20 dollars for a donation, I like to donate a piece to someone!"

-I also like that people know that they are giving money to get exactly what Rowan needs. They know what he is working toward and that there is a third party making sure their money is going for it.

-People like getting something they can hold, remember someone by, or to give someone and this program rewards both the buyer and the challenger. They get something for their money and they get to help.

-The program is simple, straight forward and the communication is great. You get updates on how you are doing weekly. You only have to tell people, show them the products, and make sure you take care of any orders you get personally (say through checks).

-Anyone is allowed to use the program not just the autistic community or just parents. That means my not just autistic son can do it as well.

-I love that so much of the money raised goes to the families in one form or another. Major plus there.

-Visit their FaceBook page for even more pros in the form of friends, giveaways, and tips!

Cons:

-I would do the flyers a little differently but I over came that by simply adding Rowan's name to the flyer as "Challenger" so people would know. I would also include a description of the items on the flyer because one (at least) of the pendants doesn't come with a chain though one can be bought for it for a little more.

-I am a little concerned about the people who go to the site and do not understand that only certain products help toward the challenge. It is confusing to some and even more so to the computer challenged (like Grandma Maggie)

Update from Mrs. Winter: "I also get orders from people that don't understand to add a challengers name when they place the order, so I reach out and ask if they made the purchase to help someone in the iPad challenge. That way we get the correct points to the challenger."

-If you are a bit secluded, as some special needs parents are, then it may be hard for you to reach the goal. I may have a blog but even I am concerned that I don't have enough people in my circles to reach the goal. I have received help in some form or another from some of my friends in the past so it can be hard to ask for more. But I am hoping that they will share it around a bit and their friends will help a bit.

-I didn't realize how hard it is to get to 5 or 10, let alone to 60.

- There is a limited number of items that are included in the challenge and that may limit the sales. I'll let you know how that goes.

OK... Like I said, I will update this more as I go along. I think over all, that this program is a great one. I am really hoping that it works out because Rowan really needs the device and sooner than later.

Keep coming back and don't forget to leave your advice, thoughts, and comments below.

Check out my story so you can help Rowan find his voice!

Helping Rowan Find His Voice!

2012-02-02T18:27:00.009-05:00

50 TO GO FOR ROWAN TO FIND HIS VOICE!!

WILL YOU HELP???
(I didn't realize how hard it is to get to 5 or 10, let alone to 60.)

Child's Name: Rowan

Child's Age : 4

Child's Disability: seizures, hypotonia, cp, chronic encephalopathy, severe apraxia, severe expressive language delay, moderate receptive language delay, 11 genetic abnormalities... among other things.

Do you have specific Apps you are planning to use? iReward, Touch Chat, My Virtual Playhouse (those are the ones he uses in Speech)

How do you think an iPad will change your child's life?
His speech therapist says: "That Rowan may never gain the ability to use speech as his primary means of communication but having a personal iPad would give him the best chance to communicate at the level of his peers."

His neurologist says: "It would be highly motivating for him and will increase his ability to effectively communicate his wants, needs, and emotions with others."

His mother says: He tries so hard to communicate but it is so frustrating for him and his family when we just can't understand. I know he has so much locked up inside that he could let out. He would be lighter and free to be more involved in the world. He would be able to learn better if he could show us what he already knows. There is so much help that an iPad contains. The reward program is a great way to help him see how well he's done and when we can be all done. I know there are other programs that would aid him in knowing what his day will contain, games to teach him things while we wait in the many waiting rooms we visit.

Why we are asking for YOUR help: Insurance is a funny thing. It will pay for an assistive device like THIS, that can cost thousands of dollars. It only has one function. communication. The iPad has many functions for a fraction of the cost. In Rowan's case, his Speech therapist uses it to help his communication, his behavior, and to encourage his speech using description. Those go beyond the abilities of the traditional more costly devices. Insurance does not want to pay for the cheaper but more functional device.

At this time his family can not afford to meet this need on their own. With your help, we can give Rowan a voice for just a little bit out of several pockets.

Ways to help:
1. My therapist suggested the following way to earn an iPad2 with your help. Go to main page here www.thepuzzlingpiece.com and click on their products tab, then the tab for iPad challenge pieces. Or you can go directly to the right page for the challenge by clicking HERE.

***If you buy one of these pieces add Rowan Sandeen to the challenger line.***

Then share this with others. For the first 60 items from that page (only) Rowan will win an iPad2. For every 12 sold after that, Rowan will receive a $100 iTunes gift card to be used for the apps that he will use.

You can read my review as we go through the challenge by clicking Here .

2. Hit the tip jar that is in the upper corner of the blog and put a note on your donation that it is for the iPad fund.

3. Let me know if you know of another way to get Rowan what he needs. We have contacted several resources for help but the waiting lists are long because the iPads help so many children with so many different diagnoses.

4. If you can't help yourself, PLEASE share the blog around to others who may be able to help.

****NOTE: I will be updating the number at the very top to count down to let you know how we are doing. Remember it starts at 60. I will also be sending the blog out at least once a week until we reach our goal, so I'm sorry in advance if you get sick of seeing it.****

THANK YOU!!!!!!!!