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.

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.

31 for 21: Big Brother Love

Elijah is loving my new iPhone.  I can't get the darn thing off of him.  He found the camera and decided to go and get some cute pics for me.  I thought they worth sharing.  Elijah is such a good big brother.  He nit picks and wrestles with them like no other, but when the twins are not feeling well or having a melt down Elijah is the most gentle understanding brother there is.

Isaac

 

Caleb

 

31 for 21: Croup x2

I have not been keeping up the last couple days with my blog because Caleb and Isaac decided to get sick and keep me busy (or should I say busier)..

Yesterday morning around 3:30am Isaac awoke me by barking his horrible deep..deep croupy cough.  I got up and took him outside into our 45 degree rainy weather to see if that would help.  He really didn't appreciate that and started scratching me and yelling and making the croup worse.  I took him back inside and rocked him back to sleep.  I usually give it a good one or two tries to get them to stop before I call it quits and head to the ER.  Well, Isaac slept for another whole 20 minutes and back up crouping again.  I decided to head off into the ER with him.

Here is where I explain the difference between my "typical children" and my guys with "Down syndrome".  See its not the Down syndrome that ALWAYS puts me on high alert when and if they get sick.. My other 3 children, when they were croupy we just cuddled them and got through the night for a few nights without seeing the doctor.  The twins on the other hand, they both have other underlying medical conditions that we have to take care of sooner than later.  It IS NOT because they have Down syndrome. They both have grade II subglottic stenosis, size 3+ tonsils (when not infected) and asthma.  Subglottic stenosis means they have narrow airways.  We were told they were both very close to having to have a trach when they were evaluated as infants.  Their airway is only 60% normal size and this does not stretch, but will continue to  grow with them as they grow bigger.   This means they will always have a narrow airway, but always be at risk when swelling occurs.  Their first two years they had strider so bad it was nerve racking for us to always hear them breath like they were struggling.  So, I DON'T mess around when they sound croupy.

After arriving at the ER we found that Isaac also had an ear infection.  Poor bugger got tubes in his ears this May for the second time and when we went in June for our follow up to the surgery, one tube had already fallen out :(  This is the ear with the infection.  After 2 shots of Rocephin and a shot of Decadron and a new red teddy bear, we were sent home.



On the car ride home, he falls asleep to my liking.  I was ready to jump back in bed and take a nap before the other children woke.  Laid him down and went out to talk to my hubby before he headed off to work for the day.  I hear the croupy cough starting again and gagging, so I go into the bedroom to check on Isaac... IT WASN'T ISAAC.  It was Caleb starting.. *chuckle* this is seriously how they roll.  They are so identical in so many ways its fascinating to me.  I got Caleb calmed down and back to sleep, I laid down for a little nap alongside him and when we woke, called the doctor and took him in for his shot of Decadron.

Today is better, they are still croupy a little but they are coughing and moving gunk so I am happy they are both on the mend.  Also, note in the photo above Isaac holding my phone.. All I can say is Thank the good Lord for technology, Isaac enjoyed watching YouTube videos for two hours during our ER visit.  There sure is no tv entertainment for a 6 year old sick child on the tv at 5am.