OMG I just had the best laugh!!!!!!!!!!!!

OMG I just had the best laugh!!!!!!!!!!!!

I don't know about you but when I receive a text from Isaac's TSS staff from school that started like this it caught my curiosity..

Then the text ended with:

Did you notice the scarf Isaac wore to school today??? It was a bra!!!!!!!!!!!!!!

OH  YEAH.... my face was beat red and I have been hysterically laughing all day long about it

Signing "hurt" for a year when taken to toilet?

Yep.  That's my Isaac.  My sweet little love bug who is everyone's best friend, or at least tries to be.  We have been introducing potty training to the twins for a little better than a year now.  Our twins are 7 year old identical boys.  They are both non-verbal, have Autism, Down Syndrome and Sensory Processing Disorder. Due to the assortment of diagnosis' the twins have we have not been to concerned with pushing them to toilet train. They are delayed in all areas already and we knew that potty training would be a difficult area to concentrate on when they were totally not ready.

We began introducing books and videos at about 5 1/2.  Then we taught them the sign for potty.  We showed them where their pee comes from and told them why they pee.. We let them stand by the potty before bath time and asked if they needed to go.  They watched daddy go and thought it was funny.  Caleb started to "try" a few months ago and has had some successes.  Isaac however, always seemed really resistant and didn't want to.. As the months went on and Caleb was starting to go more and more (still not trained today) we decided to push Isaac a little more.

It was at that time that Isaac began signing "hurt" when he was trying.. HURT?!! no that shouldn't hurt honey.  "Its a different feeling but you can do it" we told him.  This continued on so we talked to pediatrician and behavioral specialist.  The guess was that he was perhaps trying to push the wrong way and was pushing to have a BM.  Perhaps Isaac was associating his chronic constipation pain with standing at the potty and pushing and hurting?

We went with this theory for awhile.  They started kindergarten in the fall and part of their daily routine involves trying to go potty twice a day.  The staff documents if twins' diapers are wet, dry or dirty.  They also comment on if they went potty or refused.  On Isaac's paper, signing "hurt" was a daily report.  We began to wonder if he was just signing hurt to get out of going potty.

I basically woke up this week and thought, that's it.. Why would a child who most likely is not capable of signing a word to intentionally get out of doing something keep signing that word?? If he was signing Hurt, then doggone it... he must hurt!!!

I took him to the pediatrician again yesterday and I said I want a total work up on this child.  I want bladder, kidneys, penis, all the plumbing checked out.  I want to rule out any pain before we move forward with potty training.  Isaac is under the care of a urologist for retracting testicles but they have never really examined the structure of this man parts.  The pediatrician said she would start there and go forward if everything looked right.  

She grabbed her flashlight, we held down a screaming boy and she had a look.... Uh Huh... right away she said that we needed look no further.  She said to go ahead and call Childrens Hospital in Pittsburgh and have the urologist take a look.  She was certain that Isaac has Meatal Stenosis.  Well, that's a new word for us..

She explained that sometimes boys swell up after circumcision as an infant and it fuses the urethra together.  Its often caught around the age of two when typical children begin toileting.  UGH!!! My Isaac is 7 1/2 and we are just now finding this?? Poor bugger, he really does hurt when he tries to pee.  The doctor explained that it feels like a UTI without actually having a UTI.  The urge to pee is there but often can't go.  Its like going the the bathroom through a pinched straw.

Listen to Me...

So as I sit here typing once again feeling  regretful for not "listening" to my child who is capable of communicating through sign language, I am waiting to hear back from urology.  I am hoping that they can get Isaac in sooner than later to give this poor boy relief.  From my understanding it is a quick 5 minute surgical procedure that is followed by full recovery.  The only downfall is that anything requiring anesthesia for my twins must be done at Children's Hospital due to their moderate Subglottic Stenosis.. narrow airways..

Mama is sorry baby boy :(

Blessings from Shane and Wyatt's Down Syndrome Foundation

Isaac was blessed by a newly started foundation called The Shane and Wyatt Down Syndrome Foundation. These boys have stole a spot in my heart almost three years ago when I heard about them.  See they are twin boys both with Down Syndrome who live in Pennsylvania too.  I hope to some day get our guys together.

Dad, Eric, started the foundation last year.  Taken from their facebook page:  This Foundation will have two primary points of focus.  The first will be to recognize those in our schools and communities that are making a different in the everyday lives of those with Down Syndrome or special needs.  The second will be to assist individuals or families, who many not always ask, but could use a helping hand.  

When Eric heard that we were needing a second iPad for one of the twins, his Foundation decided that Isaac would be the first recipient to receive assistance from them.  Our family is so grateful for their consideration and their generosity.  Coming from a family traveling the same path as ours is also so humbling as they know the ins and outs of our daily lives more than any other.

We gave Isaac the iPad recently and here is some of his reactions:

He knew right away what it was :)

Isaac was signing "Computer"

Look Mom, I want this!!!

Is this for real mama??

THANK YOU Shane and Wyatt's Down Syndrome Foundation

The iPad is currently in the hands of the school speech therapist.  She is programming Isaac's iPad to match Caleb's so that they can carry on a conversation.  She said it is a bit time consuming but hopes to have it up and running very soon.  She also commented on how impressed she is at their ability to catch on to the Proloquo2go application we are using.  

I have asked the twins TSS workers to gather some video of the boys when they use them to communicate, hopefully, I will be sharing that here soon!!!  I myself could not be any more anxious to see it.

I can't wait till my boys are able to "talk" to family and friends who do not know how to interpret their sign language.  This is truly a life changing gift....

>>>If your looking for an organization to support this one is it, please LIKE them on Facebook and follow their good works!!!  We are proof that they are indeed doing good works!!!!!

Your Child by Jennifer Shaw... Beautiful!!!!

I don't often share YouTube videos on my blog that are not my own, but this song really touched me today and I thought it was a beautiful video.  One that needs spread and shared.  One that parents raising children with special needs can relate to and one that will teach those who don't have children with special needs.

Beautiful!!!  Thank you Jennifer Shaw...

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!!!