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.

Caleb and Isaac have Down Syndrome..

Caleb and Isaac Have:

• Down Syndrome
• PDD Autism
• Apraxia, non-verbal
• Sensory Integration Dysfunctioin
• Subglottic Stenosis
• Asthma
• GERD
• Hypothyroid
• Ear Tubes
• Ongoing severe constipation issues
• No more tonsils

What else Caleb and Isaac Have:

• Beautiful eyes
• a funny belly laugh
• a short cute stature
• toes that I could just nibble on everyday
• a knowledge of 600+ words in sign language
• a desire to learn
• a love of watching tv
• rhythm
• abilities
• desires
• likes and dislikes

What Caleb and Isaac have given their Mom:

• Compassion
• Love
• Concern
• Fear
• Knowledge
• A purpose
• Spiritual Growth
• Understanding
• A Voice
• A Story
• Heartache
• Exhaustion

For National Down Syndrome Awareness month I wanted to be able to show that my boys with Down Syndrome bring so much to the family, some good, some not.  Looking at the list "What Caleb and Isaac have given their Mom", I jotted these words down as quick as they would come to my mind, most of that list is positive.

There are a few words that are not positive, Fear, Concern, Exhaustion and Heartache.  We are all entitled to these feelings and God gave us these kinds of feeling for a purpose.  To be alive is to experience feelings.  I am often find it so interesting how people all process their feelings and emotions so very differently.  And... that's ok!!

I remember when we were told about Caleb having Down Syndrome.  First there was shock.. Then came the disbelief "I can't see it!".. Then came fear of the unknown "I don't know anyone with Down Syndrome".. Then came the tears "there's something wrong with my baby"... Then came the big hug from Tom and both of us standing tall, firm and determined to figure this out and lean on God for guidance like only He could give us.  

We were all alone at first.  AND.. we still did not know if the twins were identical or fraternal.  We began to weigh out if one had DS and the other did not, or what would it be like to have two boys with DS? Fear again took over.. how would we, could we raise two of them if we don't even know if we can raise one of them?  We felt as though God must have alot of confidence in us if they both had Down Syndrome.  After several days we found out that we were indeed doubly blessed with identical twins, with identical genes and identical diagnosis'.

I think another word that just came to my mind is CONSUMED.  I feel like my life is now consumed with learning about, understanding and advocating for individuals with Down Syndrome.  Somedays I would like to just focus on me, my husband and my family.  If you read through my blog history I mostly post positive stories and comments about living with and raising children with Down Syndrome.  But today I think I will end with a pity party of sorts, raising children with multiple disabilities is just plain harder and exhausting.  There is so much involved with it... learning..defending...puffing up... educating.. advocating... spreading awareness.

With all that said, I would not change a thing if given the chance.  I am so proud to be Caleb and Isaac's mom.  I am so honored that God would bless Tom and I with the most amazing and different children than what we might have once dreamed for.  Most days are filled with the biggest belly laughs and tickles and sloppy kisses and others well, let's just say I can't sit down for a second or I will go into nap mode immediately.  It IS worth it... I'm just plain tired I reckon.

My Calendar Boys Smiling Down on Me This Month

Each year I am excited to get the boys beautiful faces into the Down Syndrome Association of Pittsburgh calendar.  Our first shoot was in 2008 and we have done this every year now but one.  I think its a great way to track the boys progress and their changes in looks in a fun and keepsake kinda way.  What made me think to blog about this today is that I peeked at my calendar hanging on the wall this morning and got a big smile on my face seeing my two cuties on this months photo page smiling back at me.

I went to the drawer of calendars to search for my favorite photo of the twins to compare.. it was a BIG AWWWWWWW moment for me so I wanted to share it with my readers.  The twins will be 7 in less than two weeks now. They have grown and developed personalities that make them so different, but they are still so identical and I love dressing them the same.  Often I find it harder for me to tell them apart in photographs than in person.  Sometimes I seriously have to stare at a photo for a few minutes until I am certain of which boy it is, but I think that makes it fun.

Here is the 2012 Calendar that I am enjoying this month:

And here is Caleb and Isaac's first calendar appearance. This photo is by far my favorite of all time of them.. I love it.. And just so I don't get into any trouble posting them to my blog I want to acknowledge the photographer who makes these calendars possible.  Alicia's Photography does a fantastic job with these kids.  Alicia makes the photos fun and she has a great eye for making the photo just right.  

The boys wore their Pittsburgh Pirate shirts for the 2013 calendar.  Hopefully that will boost their season next year ;)

Go ahead, tell me how cute my twins are!!!!

31 for 21: Its not always pretty around here

That's right folks, kids are messy.  Kids WITH or WITHOUT disabilities are messy.  I find myself daily trying to make my home into a Martha Stewart look alike home and honestly, I fail big time.  Some days I throw up my arms and say why even try, as soon as they get home from school its going to be a mess again. 

I do it for my own sanity and for my own desire to live in a cleaned up home.  Life gets in the way so often and the above photo is what I often find myself looking at.

Yesterday, I put on my sweatbands and rubber gloves and gave the rooms and floors a good cleaning.  It felt good, it felt clean, it felt homey.  Any takers on how long it will last?

My challenge with Caleb and Isaac??  They both have PDD Autism and Down Syndrome and Sensory Issues, you would "think" that a sensory sensitive child would want things in their place, but NO!!!!  They can destroy a room like this in .5 seconds.  I can take them by the hand and tell them they must pick this mess up and they do... but turn around and do this again.  Its like this is their comfort living.  I feel like I've failed as a parent providing them with the life skills they need to live in a clean and decluttered environment.  I decreased their toy volume by 50% when we redid their room this summer.. it doesn't matter, they still have alot of things.  I got shelving and containers for their stuff, it doesn't matter they empty the shelves and containers and decorate their floors with their stuff.  I need a magic wand!!  Does anyone have one??? NO??!!

Well then lets hear some advice from those that have been there, done that and look back with their wisdom on what worked in the end..  PLEEEEASE!!!!  I don't want to be one of those parents that just give up and give in.  I want to instill good values in my kids, but sometimes I become selfish and TIRED and just throw my hands up and do it myself.  Anyone else guilty of this?

I feel like I have to get myself organized and decluttered before I can get my kids on the right path.. Its a never ending issue.  I do have three older children ages 15, 11, and 9.  I also struggle with them daily.  Their excuse is always "The twins did it" and then refuse to pick up.  UGH!!!  But I will not give up.. someday I will become a Martha Stewart of some kind..LOL

Please post your advice tips on my blog to share it with my readers.  I am trying to get more comments going on my blog, since not everyone reads my Facebook wall.

31 for 21 Blog Challenge 2012.. Let's do this!!

I have done this 31 for 21 Challenge for the past few years now, so I may as well keep it up another year.  If you are not familiar with that the 31 for 21 Challenge is, its a time for those of us raising children with Down Syndrome to commit to blogging each day in October and spreading awareness of what its like to have a beautiful person with Down Syndrome as part of your family.

I have asked myself time and time again (and yes, I do answer myself too) how could I possibly do it again this year as I am to busy and that I am not sure what I would blog about...and my answer has been; one way to raise awareness is to teach and part of teaching is replication.  SO if I should find myself blogging on something that I think I have already blogged about in the past, either I have loyal readers who will etch another mark in their brain on something that they have read about already OR I will engage new readers with information that they are looking for and hopefully gaining a few new friends in the process.

So I begin by introducing my journey to my new readers.  I married my high school sweetheart, Tom, 17 years ago.  At the time I didn't think I wanted any kids.  God had different plans in store for me as I now have five beautiful children.  Tristin gave me the title of mommy 15 years ago and Camille came four years later on September 11th, 2001.  Tristin and Camille BOTH share the 9/11 birthday.  Elijah came in July of '03 and blessed us with our first boy.  Tom and I thought well lets shoot the dice and try for two girls and two boys.  Again we were shown that we are not in control and we were instead blessed with TWO BOYS.

Caleb and Isaac.. these boys have thrown us for a loop on more than one occasion.  They have made us better people, they have made us slow down and smell the roses, they have taught us what real compassion is, what unconditional love is, what hard work is, what undeserved frustration is, they have made us better people just by being who they are.

Caleb and Isaac are identical twin boys who BOTH have PDD Autism, Down Syndrome, Sensory Integration Dysfunction, Apraxia and are non-verbal.  They are going to be the focus of my blogging this month and boy oh boy do I have some goodies to share!! Be sure to check back.....

That's my boy, an Isaac funny

Today is October 1st.  The beginning of Down Syndrome Awareness month.  Having identical twins who both have Down Syndrome, I have LOTS of Awareness available to share for this month.  New stuff always happening in the Hanzely Household!!

I get to start the month with a funny story.  I get a phone call today after school from Isaac's TSS worker.  She said that Isaac had the best day today in school.  Apparently, they began a new system where both boys must get 10 stars on their chart before they can get some time on the iPad.  The boys have been using drills like this already.. Work FIRST, then PLAY.

So today it happened that Caleb got his 10 stars first.  As they were handing him the iPad, Isaac decided he too wanted to play with the iPad.  They told him that he still needed one star to complete his chart and then get his time on the iPad.  Here is what my sweet little guy did.. He went over, picked up a pencil (not an easy task for my guys) and tried to draw a star in the box missing one!!!! How funny is that??!!  And might I say, that was brilliant of him.  They said he needed another star and he went to make sure he got it.  

That's my boy!!