Identical Twins with Down syndrome AND Autism Statistics?

Thanks to Facebook I have met a few other families who are doubly blessed like our family is with identical twins both having Down syndrome.

Not only have I met families with identical twins but also families with fraternal twins both having Down syndrome.  To this day there are no updated published statistics of how rare these blessing are.  There is a lot of speculation and a few really good mathematical guesses but no actual numbers.  Of course in a group of parents there are some really great guesses and I loved what one parent said.  She said "We were told the odds were 1 in 80 million 20 years ago, rare yes, the number doesn't matter.  We are the lucky ones!!!"

This is the best documentation I've found thus far from a website from the UK > Click here to view page.  To summarize page read the following:


"We estimate that identical twins with Down syndrome occur at the rate of 1 or 2 in a million pregnancies and non-identical twins at the rate of 14/15 in a million."

With that statistic above now think of the 90% termination rate of those found prenatally to have Down Syndrome detected.  AND then to add Autism & ADHD to the mix makes the Hanzely twins so rare and so special.  Please Lord let me hold my boys tighter and love them harder each day knowing that you have given us a gift that so many will never know or understand.  Some may look at us and feel sorry, some may look at us and be thankful for their healthy kids but I know that my days are filled with an amazing loan from God himself. These two try my nerves more than I wish to confess, these two know all their mom's buttons, these two are so hard to figure out most days but to look back at how far they have come makes me literally have to type through tears streaming down my face.  They can't talk, they can't dress themselves or feed themselves with utensils without help, they still wear diapers and make messes I will not share information about on this post, but we are truly and absolutely blessed.  Without them we would take the world and the ease of living life for granted.  I pray that whoever is reading this would take time to get to know someone with special needs, to get to know their parents and to know that different is not a bad thing.

Strawberry Jam with Honey

Today was officially the kick off of my canning season for 2014.  This may not be exciting to you, but it sure is to me :)  Since this is Thursday I can classify today as Thankful Thursday due to the fact that its Thursday and I'm Thankful that I know how to preserve food and have all the supplies to do so.  I am thankful that my mom and grandma who taught me how to can when I was younger despite the unwilling attitude I used while learning.  

Today, I canned 4 quarts of fresh picked strawberries and made 10 pints of strawberry jam.

I have made strawberry jam for several years now, but I made it differently this year as I have been eating differently.  I am making a conscience effort to cut out as much sugar as I can on a daily basis and eating no processed food.  Thus far I have lost more than 20 pounds and I really do feel good.  No stomach bloating or pain, more energy and dropping pant sizes quicker than I could have imagined without exercise.  (Honestly, I'm saving exercise for when I plateau and need that bump to keep losing)

In the past I have made most of my jam with Splenda to cut down on the sugar content.  Its very tasty and better for you than using the 8 cups of sugar it calls for making a regular batch.  BUT this time I thought I would try no sugar and some raw honey.  So far it tastes wonderful.  I traditionally make the last pint as a sample jar and eat it on bread while its still warm.  Its a bit tangy and tart but it has the delicious flavor of a strawberry still there.  Often when you put the called for amount of sugar in the jams I feel like they are just so sweet you really lose that true fruit flavor.

Warm jam on bread.. YUM!

Here is the Recipe I used:

4 pounds of washed and hulled strawberries
3/4 c. Raw whipped Honey
1 c. unsweetened apple juice
1 1/2 packages of No Sugar Needed Pectin

It's a Keeper!!

31 for 21: Online support for Down Syndrome

Today I want to express my thankfulness to all the people I have met because of my children having Down syndrome.  Truthfully I have met the most wonderful people online and I know realistically I will probably never meet them in person but they have meant so much to me and have encouraged me and educated me by sharing their stories and views of several topics. 

Because of the small town I live in, I really have not connected with more than just a handful of parents living the Down syndrome journey with their children.  I began with DownSyn, then moved onto blogging and Facebook and Twitter.  Without the internet and the ability to meet all the these people, I would be pulling my hair out much like one of my favorite photos of my twins below:

 This is a quote I saw on facebook last night and felt it appropriate to use today:

"God doesn't give you the people you want, he gives you the people you NEED. To help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be."

Thank you Lord for the Blessing of Friends!!

Thankful Thursday...

Today I am thankful for the giggles I get out of my children everyday.  Today Caleb was the giggle for me.  He found his sisters headband and wore it on his forehead AND turned his glasses upside down.  He literally did this for 30 minutes.  He ran around the house being goofy and trying to get my attention because he knew he was being silly..  Thanks Caleb :)

Thankful Thursdays.... Sweetness and a Scary Moment

I am so thankful that God blessed me with all the children he did.  Each one is so very special in their own ways.  Looking at these photos does nothing more than put a big smile on my face.  I love that Camille is the best big sister and loves her twin brothers so very much!!

Today is an especially good day for me to post how thankful I am for my children.  Today Camille was home sick from school. I am thankful that she is feeling better.  I was making her (and the rest of us) some homemade chicken noodle soup for dinner tonight and when I got to the part to put in noodles, I realized I didn't have any noodles.  I gathered Elijah up and we ran into the grocery store for noodles.  I left Tristin in charge for a few minutes while I ran in town, which I do sometimes.. I get a phone call while I'm in the grocery store.. Isaac had made his way up to our neighbors house (Tom's Aunt and Uncle).  When I left for the grocery store, I left the garage door up.  This is something that I sometimes do, but now cannot do anymore...EVER!!!.. The boys are getting good at opening doors,  apparently Isaac opened the door going out into the garage, saw the garage door was up and took off.  THANK GOD, he went up to Aunt Sue's and Uncle JR's.  THANK GOD he did not try to cross the road to goto Grandma and Papa's.  THANK GOD he did not just decide to visit the woods or something.

As soon as Aunt Sue called me to tell me he was up at her house, I called Tristin to go get him and I ran straight to KMart to purchase those child proof door handle hickey ma jiggies.  I think door alarms are in our future too.. This is sooo scary and something that I have been soo nervous about now that they are more mobile and more independent.  Please pray for a safe summer for these boys!!!  I continue to pray for wisdom each day so that I can stay a step ahead of them all the way..

Quiet Reading Time with Dr. Suess AND Our Decision

Today as I was running around trying to get everything ready to head out the door for our weekly outpatient Speech Therapy and Occupational Therapy sessions, I noticed that the house seemed awful quite for having 5 year old twins on the loose.. This makes me nervous!!  I give a quick look around the "usual spots" and I didn't see them.  I head towards their bedroom to find a closed door... uh oh, this is usually never good.....

I was pleasantly surprised and impressed to see this:

What a happy mama I am :o)

As the morning went on I had several things on my plate to take care of.  One that I am glad to finally have off my shoulders was making the FINAL DECISION to NOT send them to kindergarten this year.  We have been praying about this and seeking advice from other parents, providers, and educators.  Many of them suggested we send them.  Many of them said ultimately its our decision.  And some said its a tough decision and one they would not have an answer for.

The boys turned 5 in October of 2010.  They are eligible to begin kindergarten in the Fall 2010 session.  They are doing so many wonderful things that I feel makes them entirely ready.  Writing their names, drawing stick figures, identifying all the letters in the alphabet, reading more than 50 words, signing over 300 words, identifying colors, shapes, and finally playing appropriately with toys and other kids.

What they do not have is verbal communication.  This is the biggest reason we have decided to keep them home with us another year.  I'm not saying that in this year we will have verbal communication, but I am saying that the intensive Speech Therapy we have them in seems to be doing something.  We started in September with a new speech therapist who uses Prompt Therapy.  She is physically moving their faces according to the sounds she wants to see come out of them and they are responding.  There are no words yet, but we have heard many many new sounds out of them and it seems as though they are aware that they are sounding different.  They are saying PaPa to Tom's dad.. They ask for bubbles by saying BaBa.  And Caleb plays a game that he puts us to sleep and the only way we wake up is by him saying UP.  Its small but in our books its BIG that they are making sounds.

Another point that really helped make up our decision was the fact that if they were typical children, they would just be entering into kindergarten this year due to their October birthday.  So since they are obviously delayed, why not delay their entry into school as well.  The outpatient therapies we are currently receiving far out weigh what we feel they will get out of the first year of school.  Once they are in a full day school schedule I will no longer be able to transport them to the Punxsutawney Hospital for therapy. 

It feels like a huge weight off my shoulders.. Should We?  Should we not?.. as of today its official We Are Not.      ahhhhhhhhhhhhhhhhhhh

31 for 21: Thankful Thursday Our Girls Nite Out

Often times trying to get away for a night of fun activities is so difficult to do.  Tonight I found a way to have a girl night out.  There was a local church here in town hosting a concert by Meredith Andrews.  I have been hearing some of her songs on the radio lately and loving them as I have really related to some of the words.  When I heard she was coming to town I had to go.  This was the first concert for Tristin and Camille both and I am happy to say they both left there with a CD signed by Meredith and they loved the concert.

Music is such a struggle here at the house lately.  Tristin is 13 and wants to listen to all the Top 40 Music.  I "the mean mean mommy" do not approve of alot of the songs and make her turn it off.  I have been trying to get her interested in more Christian artist and I'm hoping tonight was a good step in the right direction.

When she first watch Meredith Andrews on YouTube to decide if she wanted to go see her she said "Mom, she's so pretty" to which I replied "Do you think you can't be pretty and a Christan?".  That made both of us giggle but it opened up a great conversation between the two of us.

I feel so caught up in just tending to the twins these days.  Their many therapies, feeding them, bathing them, keeping them entertained, that I feel like I'm losing precious time with Tristin right now.  As soon as she turned 13 the teenager attitude kicked in.  That VERY same day!!!  Anytime I can bond with her is a good time.  I enjoyed both of my girls tonight.  I pray that something may have been said or done tonight to open their  hearts more to following the Lord in their days to come.  The older they get, the more nervous this mama gets to let them go off and make all their decisions without me.  Its scary in one aspect, but exciting in another knowing that I have faith that they have a very bright future ahead of them. 

Thanks Girls!!! Luv Ya XOXOX

31 for 21 Day 23.... Stubborn

Today all 5 of the children did not have school due to a teacher in-service day. The weather was rainy and chilly, the kids were all pretty hyper so I still sent them outside to play... rain and all. The twins still had their TSS come today to do drills with them and work with them for a few hours. After most of their work was done we all headed out to the Amish Bent N Dent store and bought a ton of groceries that's sure to last us two or three weeks. When we first got a TSS we were not allowed to leave the house. We were only allowed to use their services in the home environment as that is what the boys were familiar with. Now, we are allowed to use the TSS's out in the community since the boys are older and we need to help adapt them to social setting in the outside world. Its is TRULY nice to take them to the grocery store with me, especially on days like today.

I had my own cart which I intended on filling up from the get go, I knew there would be no room for a squirmy boy. So each worker got a cart and one boy to push through the isles and talk about how to act in a store. OH BOY!! They just weren't fast enough today. I was in one aisle and I hear a BOOM..then a CRASH...then another BOOM. It was hard for me not to chuckle. I knew it was my boys before I even began to investigate. If you take your eyes off of them even for a minute they like to scoop items off the shelf and toss them. So they both got a pretty lengthy discussion on why they should not do that and they can get in trouble for this or they could break something (which thankfully today they did not). They both seemed to be processing what was being told them and I turned to continue my shopping. Not even 15 seconds later I heard another BANG... and then the TSS came over and told me they would be taking the boys out to the van while I finished up my shopping. I did laugh a bit then. When they want to do something, or don't want to do something, NOTHING stops them. They are stubborn. VERY STUBBORN!! And I think this is the great fighting spirit that I love about them. I've often thought that it was this stubbornness that got them through the tough start they had in the NICU as a 2 pound and 3 pound premature baby.

So many people label people with Down Syndrome as "Oh they're such Happy People". They are happy people, but they are also sad, mad, fearful, grumpy, hurt, shy, outgoing, confused, overjoyed, intelligent, moody, self-conscience, and stubborn.

I got off the idea I started to blog about so let me get back. So the kids had the day off school we did some running, weather was bad outside but we made the best of it. We all took our turn on the Gazelle exercising, we all cooked dinner together, we all sat and watched Twilight after dinner and folded laundry and just had a great night. I went in to sit with Tom for a bit to unwind and get ready to write something in my blog tonight and in comes the kids laughing and screaming with joy at what they had done. I asked them to all put their pile of clothing away and they decided to dress up our dogs instead. It was quite funny and I thought I would share my kids' humor.

Auggie Doggie "our girl"


And Rosco "our boy"


And this was Caleb trying to tell us what he thought about all the craziness


I am thankful for crazy days like this and I'm thankful for stubborn, silly children.

Thankful Thursdays....

There are so many things in my life that I am truly thankful for. I'd like to document some things weekly and recognize things in my life that have put me where I am and have made me who I am.

This week I'd like to comment on how thankful I am for the weekly bible study I host at my home. Some weeks we have four ladies some weeks we have 8 ladies but non the less I am so thankful for these ladies who attend and for accommodating my crazy schedule with my boys and our life. I am thankful that by hosting it here at my house it motivates me to clean each Wednesday and make my house a little less messy. I'm thankful for being fed the Word of God. Sometimes during church with five children to keep quite I may miss the meaning of the sermon or am unable to truly feel that encouragement I hoped for. By committing to a weekly bible study and having other Christian women in my home teaching me and enjoying their fellowship I get that encouragement. Today was a great lesson, one that again has made me thankful. We are studying from Daughters of Eve by Lottie Beth Hobbs and today was the chapter on Lots Wife.

She was by far a not a good wife yet she teaches us many things. These are the five things taken from this book that I need to remember in the trials of my life.

1. Trials help us to achieve life's major purpose: holiness
2. Tribulations draw us closer to the Lord and make us realize how helpless we are without him.
3. Tribulations are necessary for abundant living. If you have never known sadness, could you be grateful for moments of joy?
4 Trials help us readjust our sense of values. Many would never think seriously of spiritual matters if they were not brought to a low.
5. Suffering better enables us to comfort and sympathize with others.

Some might think oh "Misery loves Company" but I think oh I've been there done that and here's how to get through this. It also brings to mind the wonderful online support groups I have found with other people raising children with Down Syndrome. Its so nice, and I'm thankful for each and every one of them. God is shaping us with more compassion, love and understanding by blessing us with our children.

Guess I'm thankful for alot today, better save some for next week!

Oh and look at the yummy dessert a dear friend brought to todays bible study.

Isn't that the most beautiful fruit pizza you've EVER seen!! Thanks Kristen :)

Until next time...