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!!

Last Harvest, Yummy Red Bell Peppers

I headed outside for my morning routine of checking on the rabbits and feeding them.  It has been so neat to watch how their fur and their size has changed since we got them a month ago.

While I was outside bundled up due to the crisp Pennsylvania morning air, I decided to head down to our garden one last time to see what was left to pick.  I very surprised at how many peppers we still had coming on.  I love red peppers and they were waving HI to me as I approached the garden.

I made two trips back up to the house to dump the bags I harvested and decided to take a photo of their beauty.

See the freshness!!

Cleaned and ready to prepare

I plan on stuffing a few with hamburger, roasting a few to freeze for later use, strip some to eat fresh and some to freeze for winter cooking, and of course make a meal out of them for tonight's dinner.  I love when our garden is a source of our healthy food.  All that hard work does pay off!!

Weekend Getaway!!! ahhhhh

This post is NOT about my children, this post is NOT about Autism, this post is NOT about Down Syndrome.  Its about me and my husband taking a long weekend without the kids to do something uninterrupted that we wanted to do.

BOY does it feel good to be able to do that.  The twins are growing up, going to be seven in a few short weeks and we are able to sneek away a little better now.  My sister Heidi was so generous by coming and staying at my house for the weekend.  Her, Lorna, Dan and their dog came over and played with the kids while mom and dad went off to The Mother Earth News Fair in Seven Springs PA.

I come home with a head full of workshops that I am anxious to put to use.  I want to help Tom finish up our rabbitry and get started with more Silver Fox Rabbits.  I want to eat better and look at more organic foods.  I want to get back into baking breads and take it even further than before.  I want to experiment with fermentation beginning with sauerkraut and getting a start of Kombucha to try.  I want to really kick myself into gear to think and act with healthier choices for myself and for my family.

Before my ACL tore last June with surgery following in August, I was determined to become "fit by 40", it has by far gone the other way.  I have gained so much weight, my leg has not be rehabilitated back to full strength, I have lost alot of my willpower to do good for ME.  I need to get ME back and start caring again.

When you are caring for others far more than yourself it catches up with you in so many ways and it feels like its impossible to get back to where you want or need to be.  I was very interested in learning about organic cooking, organic gardening, and organic farming.  Who knows, 8 months ago we were just beginning to talk about getting backyard rabbits and now we have a 26x14 shed almost complete so we can raise several rabbits.  And we have chosen a rare heritage rabbit that is very uncommon, Silver Fox Rabbits.  They really are beautiful and we are anxious to get the kids involved with all of their care, and perhaps even showing them very soon.

So, I am refreshed, I have great new ideas, I have a desire to be healthy for my family and even a bigger desire to make better choices for the health of my children.  Fast food has become to convienent, its time to get back to cooking from scratch.  I LOVE cooking from scratch, but I just have not made cooking and baking a priority like I should.  I baked homemade bread for over a year and was so proud of what I was giving my family.  Its time to get back to that way of living.

What are some of your favorite bread baking recipes or tricks of the trade?  Something I have never done is make buns or dinner rolls... C'mon give me your tips!!!!