A Review: The Puzzling Piece

*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!

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!!!!!!!!

A Letter For A Child With Autism.

***This a repost of something that is floating around on FaceBook. I don't know where it came from and would like to so I can give proper credit. If you know please make sure to comment below. If there is a link to the original post please include it. Thank you.***

To my child/ren with Autism.

I am sorry.

I’m sorry that it took me so long to understand that your brain works differently. I’m sorry I didn’t get it. I’m sorry I grew frustrated with you so much and had a short fuse when you were only acting out what your physical body needed to stop from hurting or feeling uncomfortable at that given moment. 

I’m sorry you spent your formative years believing...... you were not good enough, or stupid, as you so often would tell me that you were. I’m sorry I did not realize just how amazing your gifts are, and how sweet and loving your spirit is. I’m sorry I did not provide the right resources for you sooner, though I know you chose me as your mom for a reason and we are walking this journey together.

Please forgive me.

Forgive me for all the times I disciplined you and thought you knew better. You didn’t. Forgive me for putting you in situations you were not equipped to handle. Forgive me for being inconsistent with rules and messages, as if things aren’t confusing enough in your world. Forgive me for all the times I wanted to give up.

Thank you.

Thank you for being you. Thank you for accepting me as your caregiver, your teacher, your guide. Thank you for all the gifts you bring into my life every day. Thank you for inspiring me to rise above my perceived circumstances and start to help others. I would not be following my heart’s song without you. Thank you for not giving up on ME. Thank you for trusting that everything is working out exactly as it’s supposed to.

I love you.

I love you exactly as you are, today, in this moment. You are not broken. You do not need to be fixed or forgiven. You are all a mother could ask for. I will love you no matter where this journey takes us. All you have to do is keep being you and keep your heart open. ♥

Love, Mum

Special Manners 101: We all get worn out

I am under half way through 2 months of extra appointments, endless phone calls, and unwinding red tape. I'm not sure what is going to pop up after the end of February and I don't have the energy to think about it. I am already beat. Someone asked me how my day was. I told them that it was good because the fact that they asked on a Sunday meant no doctors could ruin it.

Let me fill you in a bit. My son sees therapists, a regular doctor. a neurologist, a dietician and a muscular specialist all the time. We average about 2-3 appointments for him a month besides the three therapies a week. Until the doctors find something else to look into. We are looking at the mobility folks, the eye specialist, the ENT, a sleep doctor and study, new braces which require a casting and I can't remember the rest right now. This all with in the first 3 months of this year. I also have a medically fragile husband, an autistic daughter with 3 therapies a week, a fairly above average almost teen and my medically interesting self that all have our own issues.

Then there is insurance issues that need to be dealt with, schooling to be done, money to be earned, laundry to be folded..... all the normal stuff and then some. For every specialist there is a packet of paper work, tests to go through and the stress of going through it all. There is the lack of sleep from pain. If The Boy can't sleep, than mom doesn't sleep. Normal stuff in normal families can wear a parent thin. Special needs parents deal with all of that and so much unrecognized more.

Special Manner #107: You have it tough, and so do we - so give us a break.

When a parent has a bit more on their plate some things slip off the edge. Don't judge. Again, it is just that simple. If you are up for a bit more, you can always offer to help, but try not to push to hard. Sometimes we don't think the crumbs need to be dealt with or we know they can be handled later. No big deal.

If a special need caregiver is a bit sharp with you, don't take it personal unless you did something to deserve it. Lack of sleep, proper food, and general mind rest can  make things a little harder to smile through. We can be a bit um... short tempered. Keep in mind that we try to be calm for the kids, not cry in front of them, and not yell at the doctors... that means anyone else is fair game when all that locked up crap is too much to deal with anymore.

We worry about our child's life, money, the car, the insurance, the other kids, our spouse, the house, the law, the school, the therapy, the doctors, the money (yes I repeated that on purpose... it is a huge worry tied to every thing else,) if we are doing the right thing, are we doing too much, too little.... I could keep going but I would hope that you get it.

We don't want to take it out on others. We don't like to ask for too much help in case we use up what we may need later. We know our kids best. We don't always trust others to do our job. It's hard for us. Be patient when we start chewing on your leg or puling out our hair. We will be fine after we put in some time in the adult time out. 

My point is that sometimes it adds up to a meltdown. It isn't that we don't like you, love our kids, or are ready to call it quits. It just means we need to chill out and regroup. We don't need interference that makes an already tough life tougher. We really don't need to be judged if the dishes aren't done, the laundry not folded or we forgot to make the bed. At least we changed the diapers, paid the phone bill and went to the 12 appointments in the last 2 weeks.

Remember that you are not alone and that you can make it through the storm... after all, look how far you've come.

We Are Poor Because..... (a view)

I think that the real problem in America society is a lot more a basic perception issue then a culture issue. I am amazed on how people who claim to be non-biased, non-bigoted, non-whatever are actually the ones who are the worst of the lot.

There is a class war going on but it isn't just in the government or in the corporations, but on the everyday street level homes. People class themselves separate from others. The 99% are lazy good for nothings wanting hand outs. The 2% are money hungry Scrooges who will do anything to get richer. Really people? The Star Belly's are so snooty. And do those stars really make them any better? Didn't you kids pay attention to Dr. Seuss? 

Consider:

"A US report published earlier this month indicated that nearly 1 in 2 Americans have now fallen into poverty or are scraping by on earnings that classify them as low income.

Based on the report by the US Census Bureau 49.1 million Americans live below the poverty line, meaning 146.4 million Americans, or 48 percent are considered low-income or poor.

The US recession began in 2007. More than a year after the recession officially ended in 2009, the US unemployment rate remains above 9 percent, and the poverty rate rose to 15.3 percent in 2010 from 14.3 percent in 2009." (Read more on this topic HERE)

I asked some smart folks why the above was true. I also asked for solutions. I was shocked at the responses because they were basically blaming the poor alone for their inaction to better themselves:

    ~The poor folks are full of poor me mentality and ask for too much from others. They think they are owed something. They think the rich shouldn't keep their money and that the government should give them money they didn't earn.

    ~"I vote we get some skills and go earn more money. The divide between rich and poor is caused by behavior of individuals in handling their money, not by some conspiracy by rich folks to keep us all down. If you want to blame someone, blame the public education system, which fails to teach kids about how money works......

I asked if this person thought it was really that simple.

"I don't deny that people who know how money works will tend to try to accumulate as much to themselves as possible. Some of them will even cheat others to get it. However in this country the main reason for poverty is lack of education about money. "Poor folks have poor ways" is an old saying for a reason. Debt and unnecessary consumption, lack of discipline and chronic shortsightedness, the inability to delay gratification. These are the root of the problem, and the public school system does nothing to change it. And yes, most of us are in the laboring class because we don't really want or know how to not be in it. And yes, I include myself in that. I even know the knowledge is available, and I'm still too stuck in the security of get a job and earn wages to get out of it." 

     ~Poor people are poor because they voted Democrat for 40 years.

    ~It is a myth that poor are getting poorer and the middle class is  disappearing.

    ~Anyone can get rich in America.... ANYONE! 

    ~And if the poor lived more simply, they could save more money and not be so poor. 

Now, I'll be honest and say that I can agree with some of the things above. But I also know that the simplistic nature of some of the statements don't reflect the reality of life.

My Break Down: 

Living Simply: Meaning- Buy a house you can afford and stay there after you get it paid off. Buy used when you can and go cheap where you can. Don't use credit if you don't have to. Pay your bills on time. Buy and grow food that you can freeze, can, or use for a while.

I can agree with this being a good thing. It can even mean a less stress free life. I do not think it makes one richer. Old cars break down, old houses have upkeep, and there is other money draining stumbling blocks that keep the poor in the red. Medical expenses add up in a hurry. Energy bills and gas prices rise while pay checks stay the same or are lowered to pay for health insurance.  Even the price of food has gone higher while people have getting poorer. 

Anyone can get rich: Not really. Those who start out poor often stay poor. Not because they are too lazy to work their way out but because that is how it works out. You are born into poverty and you go to school, get good grades, but get sick a lot because health care isn't there. You may get a job right out of school doing what ever you can find but there isn't much upward movement. But it is a job so you stay at it. You do the best you can to keep your family going. If you are to busy fighting just to get by it is really hard to overstep that poverty line.

Yes, you can try to get into college but is that really a sure bet at a better life these days? How many folks are struggling that have degrees? How many are drowning in the loans they took out? How many have lost their homes and lively hood even though they worked hard all through school and at the jobs they landed after?

Bottom Line: I don't think it is easy to be poor, to stop being poor, or to become poor after living that better life. I think it takes a lot of work to survive. I know that our country's poor may be another country"s middle class but it is all relative. If you don't have electricity there, you don't lose your kids. Here you must pay that bill or face seeing your kids sent to foster care, even if you find other ways to keep your food cold, family warm, and lights going. And the cost of electric in this country is over priced.

People who don't understand need to just try our side of the street. If you don't have health care, you get sick and don't get help. Your body wears faster so you don't survive as long, so you need more help. It is a cycle that will not end just because people try to make their lives better.

We are all responsible for our choices. We must realize that. BUT other people's choices also play into our lives. If I have been working my middle class job for 14 years but the boss decides to sell out to a company that is going to shut down the plant, it is not my fault my job is gone. A real life look at things is important when we consider other people's positions.

Think before you judge. Put yourself in to the place of others and think about what you could have done different. Or better yet... don't judge others, instead try to understand others and then be helpful to your fellow humans... and animals because they deserve love too.

On a side note and with a political twist: If you are in anyway an internet fan then pay attention. You need to make your voice heard: 

Congress shall make no law respecting ▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓ , or prohibiting the free ▓▓▓▓▓▓▓▓▓▓▓▓▓▓ ; or abridging the ▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓, or of ▓▓▓▓▓▓▓▓▓▓▓▓▓▓ ; or the right of ▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓, and to ▓▓▓▓▓▓▓▓▓▓▓▓▓▓█ Government for a ▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓▓ .”

STOP INTERNET CENSORSHIP. STOP SOPA. STOP PIPA.

Peace and love to you and yours.