Sharing My2k story with The White House

The fiscal cliff is the buzz word these days.  You hear it on the news, you read it in the paper, see it all over  social media, you hear friends and family talking about it.  I received an email today from whitehouse.gov asking for family stories to contribute to the Presidents desk.

Here is a statement from the page:

"You and your family have a lot riding on the outcome of this debate. We all do. And as citizens, we all have a say in the country we want to build… So make your voice heard."

— President Obama, December 01, 2012

One thing that I have found since having my twins is my voice.  Before them I let so many things slide.  Before them I would never question a medical professionals opinion.  Before them I would never speak up and say that I disagreed with pending decision to do something. Before them I really just watched everything happen and either complained about it under my breath and to family or I just swallowed it and sat back and pouted.

Some may say well I'm not going to speak up or do anything because I'm only one person, what does my story matter?  One thing that I have found is that if two or three people ban together and work feverishly to make a change not much happens.  The two or three people burn out before the change is ever made... BUT if 300 people make a statement on how an issue will affect their family its peaks some interest.... AND if 3000 people make a statement they are heard.  Being a single voice is as a whisper, but joining in and shouting your voice with many others becomes and insisting outcry for attention to a matter.

I have attached my story for reference and to give you a sample of a story:

Raising five beautiful children is a blessing that my husband Tom and I have been given.  My husband is a partner at a CPA firm and makes enough money that I can stay at home with our children and work a part time job from home.  Financially we are not struggling, we are not wealthy by any means but we manage and are happy.  A $2000 tax would be devastating to my family.  We will still manage to get by, but we have one really big factor that we are not willing to give up and to continue where we are with this issue we will have to majorly cut in areas of food, clothing, utilities and shelter to keep it going.  My two youngest children are 7 year old identical twin boys who both have Autism and Down Syndrome.  They have changed the definition of our family dynamics to unconditionally loving and giving no matter what.  They require a lot of therapies, specialist, medication, and supplies.  They are both doing amazing and far surpassing what I expected to see out of them when they were born.  This is due to the early intervention and the medical care and therapy they have received to this point.  If our family were to be taxed another $2000 from our poverty level income already, it would be life changing for my beautiful boys.  Their progress would slow, their independence would be compromised, their outlook for their future would be grim.  We need to stay on the path that we are on right now, its working!!  And from a family such as ours that works hard and contributes to our community as much as we can through volunteering we need to keep what we have to continue on.  Please consider families like ours who have financial obligations above and beyond what other families have.  Its not about material items or luxuries, its about human life and striving to gain abilities to be able to give back to your community.  Our hopes for our twins are high, we believe in them, we are obligated to do all we can for them.  Please don't make it any harder on us than it already is!!

Thank You for reading and considering my story.

Stacy Hanzely

And so there it is.  My voice.... now won't you add yours to mine??  CLICK HERE without delay and add your story.  No need for a long story. A few simple sentences will do.  Join my outcry!!!  Remember that "We The People" are part of the government.  May God be with our leaders and guide their decisions to be what is truly best for our country.

SLEEP, or lack thereof !!??

My 7 year old  son Isaac has me so puzzled.  I have asked the doctors, I have asked the Behavioral Specialist, I have ask the psychologist, I have ask other parents....

My son does not sleep long enough!!  I give him upto 7mg of Melatonin every night.  We usually empty a capsule onto his ice cream or into his nightly sippy cup around 9pm.  Usually asleep by 10 pm.  BUT he's up and about right now at 4 am as he is every morning.  Right now I am listening to the familiar sound of him humming over a very loud TV that usually wakes everyone else in the house up.

Giving him a slow release dose of Melatonin is not really an option because it comes in a capsule form that has to be swallowed.  He cannot do that.

I should add that Isaac does have Autism and Down Syndrome.  I do know that not sleeping is an Autism trait, but WHAT CAN I DO?  He is in kindergarten and I always feel so bad sending him to school when I know he has to be ready for a nap.

Has anyone dealt with this and is there any hope??!!

Seeking Second iPad... Because of Positive Results

Sometimes it doesn't make to get a second item of something simply because you have twins.  When they were tiny I would buy two teddy bears, two of the same books or games, two of the same toys.  Now that the boys are seven I am finally learning that sharing is a life skill that we all need to learn.  So I no longer buy the second item when it comes to things they may "want".

Now shoes, coats, and clothing... I guess I have a hard time breaking that.  I love to dress them the same.  I do not do it every single day, probably like four out of seven days, but its something that "mom" still likes to do while they are young.  Its still really fun confusing people because so many still have a very difficult time telling them apart.

So onto the topic of this post.  Caleb had a wish from Make A Wish back in August of this year, right before school started. I just realized I NEVER blogged about that yet YIKES!!    Part of his wish was to receive an iPad with Proloque2Go software to perhaps help him communicate.  Both twins are non-verbal, have Autism and Down Syndrome.  Our primary means of communication right now is sign language.  It works for us, but not so much for family, friends, and community members.   I was skeptical about using an iPad for communication.  I didn't know if they would actually be able to understand the concept and form appropriate answers or questions.  Today I learned different!!!!!!

Today their speech therapist from school called me.  She is so wonderful and also just happens to be the "Autism Expert" at our local school district.  She wanted to express how amazed she was at how well the boys are doing with the iPad.  They are requesting things from their calendar at school, they are interacting with stories, and they are asking to play specific games on the classroom iPad... Her concern is that we only have one iPad and two boys so she cannot get them to use this to their full potential.  Ideally she would like for us to have TWO iPads so that they could communication to each other.  WOW!!! I could not even envision seeing this happen right now.  They laugh together and play together but I really have never seen them sign to one another or communicate with each other.  I guess other than one throwing a toy at brothers  head and the other retaliating by scratching big tiger marks down the middle of the perpetrators back.  To me that means: "I don't like that!!"

So, its Christmas time.  We have five children.  Husband works very hard and long hours to provide.  I work very part time from home, but also do all the mommy tasks that consume my days.  Life is expensive.  How can we find a way to get a second iPad without asking for charity or waiting to be chosen from the hundreds of iPad giveaways I've entered over the past year or grants I've applied for?  Has anyone ever done a fundraiser for their child to get an iPad?  If we were to try to save up the extra money it would be nearly the end of the school year before we could probably get one.  We could skimp here and skimp there... yes, but how can we find one either used at a good price now or raise the funds ourselves....

Speech therapist recommended looking on Ebay for used ones.  New technology is out there, iPad mini's are out and people will be getting rid of their "old stuff".  I browsed Ebay for 30 minutes or more tonight and found nothing less than $300 plus shipping, which to me is not a great deal for a used item. I don't want to spend hours browsing for something I may never find....

SOOOOOO I come to you, my blog readers.  Shout out some suggestions.  

Again, I am NOT looking for a hand out.. I am not looking for charity... I am looking for a way to provide my second son with a communication device quickly.  I am hoping that the feedback I receive will also help someone down the road that may be in the same situation as we are.

Bragging Moment:

Caleb's school work papers

Needed help writing his name but glued number is correct order INDEPENDENTLY!!!

Down in the Dumps....

I always wondered why my grandma would use the term "in the dump".  I always thought it was kinda funny.  The past three weeks I have been dealing with a strained back.  I have been in pain, I have been unable to pick up my twins, I have been unable to keep the house up like I NEED to with five children, I have been unable to be my happy cheerful self because I have this dull nagging pain in my lower back.  I am being treated by a chiropractor and my doctor.  I'm not to the point of being depressed, but I think I am just down in the dumps.  I think I get that saying now.  Each day I try to wake refreshed and start on the right foot, but each day something pops up and shoves me back to the dumps.

Let me give you a PERFECT example of a typical day lately.  Here is yesterday:

Wake up, get five, ok four  kids off to school. Tristin is capable of getting herself off to high school. *check*
Pump up radio with Christmas music to get in the mood to clean house *check*
Coffee *check*   another Coffee *check*
Start feeling the energy pumping through my veins and begin accomplishing things *check*

First load of laundry goes in and I go out to visit and feed our rabbits.  Come back in to switch laundry and what do I find??? A diaper had been thrown into the mix and all those annoying little water beads were EVERYWHERE.... Ugh!!!!

What do you do when you launder a disposable diaper with your clothes?

First, I shook out the clothes over the garbage can, then I scooped out whatever I can of the annoying beads from the washing machine  and then I Googled what I am supposed to do. Isn't that what everyone does when they are in a pickle these days??  I will save you this step, in case this ever happens to you, first of all.. I'm sorry if it does.. Second, its not as big a headache as I thought I would be.  I envisioned me sitting there picking every single annoying little water bead of every individual piece of clothing.  Thankfully, not so.  Simply put clothes into your dryer and run on high heat.  It dissolves the annoying little water beads and your filter catches the little debris.  You WILL have to run your dryer twice as it will take longer to get everything dry.  Then I got as much of the annoying little water beads as I could wiped out of the washing machine and ran it empty.  It worked like a charm and I was off and running to get my second load of the day going.

Laundry situation fixed *check*
Get dinner in crockpot *check*
Start making bread and dinner rolls for dinner..... and then my second hurdle for the day happened..

As I was pouring the last cup of flour into my Kitchen Aid my husband called me on the phone.  I answer the phone before actually pouring that last cup into the Kitchen Aid and chat with him all the while forgetting where I am in bread making process.  Oh, I needed to dump in last cup of flour.  As I continue my conversation with hubby and remain distracted from my awesome bread making skills, I dump in the last cup of flour quickly.......... ok anyone who bakes bread should be laughing right about now.  YEP my Kitchen Aid spewed flour up in my face, all over my counters and floors and surely made more than a cups worth of flour MESS!!!!!

Clean flour mess *check*

Giggle to myself thinking of the day I've had thus far........ Rrrrrrrrring... Rrrrrrring.. phone call?

I answer and its the school nurse.  They found some head lice on Isaac!!!!! SERIOUSLY???!!!!  I jump in the car to go into school to pick him and his brother up. I call my other children's schools to have the school nurse check their heads out.  Within five minutes I get a call back from the other school nurse.  Come pick up so-in-so.  (I've decided to keep the other victim confidential to forgo any teasing)

Lord Help Me!!!!

This happened to us one other time, only one child out of the five was infested.  I had never ever seen or dealt with head lice before.  I was freaked out beyond belief and scratching every single moment of the day with the heebie jeebies...  This time around, I just got to work.  Here is the result of the twins:

This is the shortest we've ever cut their hair, I think its a good look for them :)  

Today's Agenda:

Sweep and disinfect *check*
Apply overnight cream to other childs head *check*
Wake up and Clean Clean Clean *check*
Comb for nits *check*
Laundry..Laundry..Laundry... checking EACH and EVERY load for a stow a way diaper *check* 

Keeping a Smile on my Face *CHECK*

Tis how I envision someone who is "Down In the Dumps".... I need a shovel about now!!!!!

Great YouTube video describing Down Syndrome

I watched this today and would LOVE for everyone who knows my family to watch this.  I can only hope that some day Caleb and Isaac will have friends who love and accept them like the beautiful people in this video love their friends.

SEVEN

Yesterday Caleb and Isaac turned seven years old.  SEVEN years old.  Do they look seven? NO.. Do they act seven?  NO.. Can I believe we have had seven blessed years with them already? NO!

This is how it all began:

And this is where we are now:

Caleb wanted nothing to do with his candle

Isaac tried and tried to blow out his candle, but mommy helped him.

Isaac wasn't very happy with everyone cheered for him

Daddy showing off his feeding skills

What did you get brother?

Caleb says "this is all so very much for me"

As we continue on this journey we look forward to what the next year will bring us.  This is a journey that we never thought we would be on, but now that we are traveling it, we realize how blessed we are.

Run, Walk, Roll Against Bullying

Yesterday October 6th was the first annual Run, Walk Roll Against Bullying event in Punxsutawney put on by The Mentor Parent Program.  I am a board member for this organization and bullying is an issue they want to go into the schools and tackle in the upcoming year.  The weather was not being kind to us as it was rainy and chilly, therefore the turn out was very small.  As with any fundraising event there is so much prep work involved and so many people commit their volunteer hours to trying to make something like this a success.  I am glad its over and in my opinion for the first year, it was a SUCCESS.. We did it and survived!!!

Bullying is a topic that I know about, have dealt with myself as a kid and now with my children.  But it more involved that I really knew.  I took some time online and googled What is bullying and I was really surprised at what all is involved.  One might think that only the weak or disabled are the most bullied but its just not so.  I think that all of us have been bullied at one time or another.  One term that I came across reading through information is "Bullycide", that is when the affects of Bullying cause someone to commit suicide.  How very sad that it would get to that point.

I think that as a parent I need to become more aware of the signs of bullying and make sure I teach my children to stand up for their friends if they see it happening.  How easy it is for us to see something happen to someone and be embarrassed for them or turn the other cheek to keep our noses out of it.  As the bible so plainly states in Matthew 7:12, "So in everything, do to others what you would have them do to you".  I have taught this verse time and time again to my children.  I know that its easy to forget when your friends are all acting in a manner in which you know is wrong, but this is one scripture that I hope will STICK to my kids brains and hearts.

I could get into a whole other topic of how bullying and children with Down Syndrome and Autism are affected, but I don't want to get myself worked up today.  I am glad that I took the time to become more aware of signs and symptoms of bullying.  I reflected on my childhood and I remembered harsh things that were said and/or done to me... and then I thought back to some things that I know I DID that were not kind.  Thank God I have a forgiving Father, now to be sure I find a way to forgive and be forgiven by those I was unkind to in some way or another.

Take some time today to research Bullying.